Dialysis Without Fear PDF

Dialysis
without
Fe a r
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Dialysis
without
Fe a r
A Guide to Living Well on Dialysis
for Patients and Their Families
Daniel Offer, M.D.

Marjorie Kaiz Offer
Susan Offer Szafir
1
2007
1
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Copyright 2007 Daniel Offer, Marjorie Kaiz Offer,

and Susan Offer Szar
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All rights reserved. No part of this publication may be reproduced,

stored in a retrieval system, or transmitted, in any form or by any means,
electronic, mechanical, photocopying, recording, or otherwise,
without the prior permission of Oxford University Press.
Library of Congress Cataloging-in-Publication Data
Offer, Daniel.
Dialysis without fear : a guide to living well
on dialysis for patients and their families
/ Daniel Offer, M.D., Marjorie Kaiz Offer, Susan Offer Szar.
p. cm. Includes bibliographical references and index.
ISBN 978-0-19-530994-2ISBN 978-0-19-530995-9 (paper)
1. HemodialysisPopular works.
2. Chronic renal failurePopular works.
I. Offer, Marjorie Kaiz.
II. Szar, Susan Offer, 1971
III. Title.
RC918.R4026 2007
617.4'61059dc22 2006102678
1 3 5 7 9 8 6 4 2
Printed in the United States of America
on acid-free paper
To all those brave souls who deal with dialysis
To Ariel with love and gratitude

Contents
Preface ix
Acknowledgments xiii
One Dialysis Misperceptions versus Realities 3
Two A Visit to the Suds Factory:

Demystifying the Machines and Tubes 29
Three Dialysis Options:

Choosing What Works Best for You 55
Four The Decision to Pursue a Transplant 73
Five The K-Team:

Working with Dialysis Professionals 94
Six Dealing with Emotions:

The Psychological Impact of Dialysis 114
Seven The Impact of Dialysis

on Interpersonal Relationships:
Love, Sex, Family, and Friendship 136
Eight Work and Financial Implications

of Being on Dialysis 160
Nine Adapting to the Dialysis Diet,

Curbing Liquids, and Embracing Exercise 183
viii Contents
Ten Traveling and Planning for Emergencies

while on Dialysis: Taking a Leap of Faith 204
Afterword 228
Appendix A: Glossary of Terms 231
Appendix B: Helpful Resources 235

General Educational Resources
Travel Resources
Professional and Financial Resources
Legal Resources
Books
Journals, Magazines, and Newsletters
Notes 245
Bibliography 247
Index 251
Preface
hen a nephrologist, a doctor specializing in kidney func-

W tion, tells a patient his or her kidneys have failed to the point
of no return and he or she will need ongoing dialysis or a transplant
to live, a barrage of questions is sure to follow. At that moment, or
over the course of the next days and months, that person will cer-
tainly wonder, What is dialysis? How does it work? Will it hurt?
How will it impact my family? How will others view me? Will I be
sick all the time? Will life be worth living? Will I die? Will I be able
to work? To travel? To eat and drink as I please? To have sex? To par-
ent a child? And the list goes on.
Most dialysis patients will tell you that the initial adjustment to
life on dialysis, whether they are awaiting a transplant or not, is no
small undertaking. Nor is the ongoing battle of working through the
fears associated with dialysis. Going on dialysis is a major life transi-
tion invariably accompanied by a watershed of emotions and uncer-
tainties. In fact, it is debatable which is initially more profound: the
emotional or the physical impact.
In the past, end stage renal disease appeared to be an appropriate
term. As recently as the 1970s there were many hardships associated
with it: a lack of dialysis machines to accommodate everyone in need,
high rates of anemia, and hemodialysis sessions that could last for six-
teen hours.1 But today everyone in the United States needing dialysis
can be treated. Modern medicines have signicantly minimized rates
of anemia. Advancements of technologies have reduced hemodial-
ysis sessions to three to ve hours in duration and have introduced
x Preface
alternative forms of dialysis that give patients more exibility and

control of their care. And yet, while dialysis has evolved signicantly
over the last several decades, negative perceptions about life on dial-
ysis among the majority of the general population have not.
Today many persons with kidney failure are no longer denitively
facing the end of their lives. Instead they are approaching a new
chapter that, despite large challenges and lifestyle changes, can be
fully lived and enjoyed for many years. But this reality is not often
apparent to those new to dialysis, as it certainly wasnt apparent to us
when we were rst introduced to it. It is this reality that ultimately
led us, after several years of being immersed in the world of dialysis,
to decide to write this book.
And who are we? Together, we are Daniel, Margie, and Susan
the three co-authors of this bookand from this point forward will
refer to ourselves as such. Respectively, we are the psychiatrist, the re-
searcher, and the writer. We are also, respectively, the patient, the
spouse, and their adult child. Working together, using each of these
skills and perspectives, we were able to bring what began as a glim-
mer of an idea to fruition.
This idea took root a few years ago when Daniel delivered an in-
spirational and light-hearted keynote speech about living well on
dialysis. The speech deed the stereotypical misconception that dial-
ysis patients are invalids and became the seed of an idea for a book
that we wished had existed when Daniel rst encountered his kidney
failure and the resulting dialysis in 1999. We thought, what if there
had been a book written by a patient and family members speci-
cally for other patients and family members? What if there had been
a book that informatively, realistically, and even at times humorously
laid out a road map for successfully living well on dialysis, and that
covered a range of practical and personal topics from dining out to
traveling to working? What if the book had been interesting, rele-
vant, andcan you imagineenjoyable to read? Certainly the three
of us, and even others near and dear to Daniel, would have read it
Preface xi
from cover to cover. And in doing so, our learning curve associated
with adapting to dialysis would have been less steep and our initia-
tion to this new world would have been less daunting. Alas, there
was no such book, or at least none that we could nd.
Today we are proud to have written such a book; however, our per-
spectives are not the only ones you will hear. Before putting pen to
paper, we met and spoke with numerous dialysis patients and medical
professionals who weighed in about what it means to live well on
dialysis and about which persons do so and how. We relied on med-
ical professionals to refer fellow patients to us. We asked doctors,
nurses, and social workers to introduce us to folks who were in their
eyes living well on dialysis. We granted anonymity to each person
we metpatient or otherwisein hopes that he or she would feel
comfortable sharing intimate details and true opinions. For this rea-
son, names, places, and other information about the identity of the
individuals described in these pages have been altered. But other than
that, the stories are quite real and so are the people telling them.
As you will see, this promise of anonymity worked. The people
we spoke with did not pull punches; they did not attempt to stie
their opinions. Our intent was not to sugarcoat dialysis, so we in-
cluded many of the honest-to-goodness opinions that we gathered,
even the most negative. At the same time, we shared what we heard
many others say, which was often very hopeful. Ultimately, the
opinions throughout the book should be taken seriouslybut re-
member, they are opinions. Much of dialysis is about choices, and
once a patient chooses to follow a specic course of treatment, his or
her healthy emotional response is to advocate the path chosen
wholeheartedly. In other words, at times, you may need to take some
of the very strongest of opinions that advocate this or that path with
a grain of salt and to understand them in the context of a given per-
sons particular situation.
Another point to bear in mind while reading this book: it has
been written for adults dealing with dialysis. We felt that pediatric
xii Preface
dialysis likely warranted a separate book entirely. But if you are a

parent of a child coping with chronic kidney disease, you will still
nd much of this book to be of interest. Likewise, this book was not
written specically for people who are suffering from comorbid (i.e.,
co-occurring) diseases, such as cancer, when renal failure is just one
symptom of the disease. Even so, there are sections of the book that
will be of value to persons coping with such diseases.
In the end, the compilation of the voices and stories herein, in-
terspersed with facts and other information about dialysis, should
resonate with our readers as if they have been talking to an old
friendan old friend who has walked down an uncharted path be-
fore them, and having walked ahead can now provide readers with a
map. The map highlights treacherous sand traps, prickly bushes,
beautiful overlooks, and comfortable pit stops. Each road marker
serves as a valuable piece of information, and collectively they provide
one with a general idea of what to expect on the journey. Having a
sense of what is up the road ahead will, we hope, make the journey
less frightening.
Of course, we are sorry that you, our readers, have joined us on
this particular road. Truthfully, it is at times a little harder to walk
than certain others. But it can be traveled! More important, it can
be traveled with enjoyment, and we would be honored to show you
the way.
Acknowledgments
his book was a collaborative effort. Wed like to thank all the
T people who contributed. Thank you to Polly Jacobson, M.D.,
and James Jacobson, M.D., for encouraging us to write this book.
Our gratitude also extends to Barbara Burgess for helping us to craft
our message, to Ivan Dee for his guidance on navigating the world of
publishing, and to Mariclaire Cloutier for opening the right doors.
Wed also like to thank several members of the National Kidney
Foundation of Illinois who shared with us their expertise, including
Willa Lang, Dorothy Zecca, Nancy Lepain, Kimberly Fowler, Carole
K. Love, and Kate OConner. We appreciate the time we spent talk-
ing to Domeena C. Renshaw, M.D., regarding sexuality and chronic
illness. Thanks to Frederic L. Coe, M.D. and Craig B. Langman,
M.D. for their ongoing assistance. We extend our gratitude to Sandra
Downey for her help in preparing the manuscript. Thank you to
Carolyn Brooks for reading and critiquing the book and to Kristi
Robinson for connecting us with many of the individuals we inter-
viewed. We owe a tremendous debt of gratitude to these anonymous
individuals who spoke to us candidly about dialysis and their life ex-
periences. Thank you to the many nephrologists, nurses, technicians,
social workers, dieticians, family members, and especially patients.
We could not have written this book without you.
On a more personal note, many thanks go to Ariel Szar for read-
ing and rereading this book in his second language. Thank you to Lisa
Nguyen for keeping the Szar family aoat. Thank you to the Shabbat
group, the Fuqua women, and especially the two Virginia gals, for
xiv Acknowledgments
their ongoing support and encouragement. We are most appreciative

of our editor, Marion Osmun, who has helped us write the best book
we know how and of Sarah Harrington for helping shepherd it to
print. Thank you to Norman Simon, M.D., Daniels nephrologist,
who has been with us every step of the way, whether supervising
Daniels medical care or helping with each phase of this book.
Dialysis
without
Fe a r
One
Dialysis Misperceptions
versus Realities
he kidney specialist, a nephrologist, gestures to the

Tmounds of journals, pamphlets, and magazines that litter his
ofce and says, Welcome to the land of dialysis. It is a very compli-
cated world. A person could spend a lifetime studying everything
there is to know about it. As he sweeps his arm at the stacks of liter-
ature, one thing is immediately clear: dialysis isnt as simple as visit-
ing the dentist or having your tires rotated. In fact, as you may or
may not know, it is abundantly more comprehensive in scope and
complex in nature.
Unfortunately, this complexity can often breed confusion, misun-
derstandings, and misinterpretations, which in themselves can often
create undue anxiety, depression, and fear for a patient or family
member who is new to dialysis. But these emotions can be minimized
from the start simply by being in the know about the most com-
mon and detrimental misperceptions out there. And replacing these
misperceptions with real perspectives and factsabout what dialysis
is versus what it is notwill be an important step in dealing with this
complicated world. Lets begin by hearing one womans views on
her own experience of that world. As you read this and other accounts
in this chapter, youll nd certain terminologyfor example, he-
modialysis, peritoneal dialysis, access, and so onthat may be unfamiliar
to you. These terms will be explained in subsequent chapters and are
4 D i a l y s i s w i t h o u t Fe a r
also briey dened in the books glossary. For now, we simply want to
introduce you to the overall experience of dialysisthe questions, the
challenges, the adjustmentsthat some veterans of the treatment
have encountered and successfully mastered.
Donnas Story, a Patients Perspective
Entering the dialysis clinic, Susan asks to speak with Donna and is
directed to a heavyset African American woman seated at the end of
the rst row of chairs. Despite the tubes full of blood owing from
her left arm, Donna greets Susan with a twinkle in her eye and a
warm smile. Susan quickly learns that Donna is fty-six years old
and has been on hemodialysis for almost four years. Diagnosed at
age twenty-two with diabetes, Donnas reliance on dialysis some
thirty years later is attributed to this disease, which runs in her fam-
ily. Over those thirty years she heard the word dialysis but didnt
know exactly what it was, and she says, I really didnt expect it to
happen to me. Even when she was entered into an experimental
drug study that tracked the increasing failure of her kidneys over
three years, she recalls she still didnt take it seriously. I didnt know
what dialysis was or what kidney failure was.
Eventually her primary care doctor referred her to a nephrologist
who broke the news to her; her kidneys were failing. She saw the
kidney specialist quite a few times before going on dialysis. The doc-
tor continuously tested her blood and waited for the chemical indi-
cators of kidney failure to elevate to the point that she was eligible
for the treatment. During this time the nephrologist gave her educa-
tional videos to watch, which she did, but according to Donna, It
still took being here and sitting in this chair for me to nally under-
stand what was going on.
Donna describes her initiation to dialysis as a difcult one. When
I rst started dialysis I felt restricted of course. I felt like I was going
Dialysis Misperceptions versus Realities 5
to die. I couldnt imagine those needles in my arm. I thought it was

a desperate situation. Dialysis was devastating to me. Susan asks
Donna if she thought about giving up. Well, I guess I could have
thought about giving up, but I have a family. They didnt think about
me giving up, so it wasnt an option for me. Now Donna says she
feels differently about dialysis. She is much more comfortable with
the situation, but there is a lot she has learned over her four years of
treatment that has increased her comfort.
Her familys comfort level has improved as well. Initially her
two grown sons and her husband were just as scared as she was. She
figures, They probably thought it was a death sentence for me.
Her husband Joe, whom she has been married to for thirty-six
years, initially came with her to every treatment. Now he still
makes a point to stop by almost every session and brings her lunch
when he can. His devotion to his wife has continued, although
Donna says, He seems not to be as concerned as he was in the be-
ginning.
Susan asks Donna a number of questions about the four years she
has spent on dialysis and what she would like to pass along to pa-
tients and their families new to the treatment:
What do you wish someone had told you when you rst started
dialysis?
First of all, I know a lot of people who are diabetic and are head-
ing toward dialysis. You try to tell them about dialysis but they dont
listen. They dont seem to understand the seriousness of this. It is
like trying to talk to a smoker who refuses to quit.
I wish someone had told me that dialysis was permanent. Instead
they told me that I had a choice between peritoneal dialysis and he-
modialysis. It was very discouraging to nd out later that I really
didnt have a choice because of my weight. The same was true for a
transplant. It was very disappointing to be given false hope. Im cer-
tain if I could lose the weight they would put me on a transplant list.
Unfortunately, the weight loss is something Ive never been able
to do. They recommended gastric bypass surgery for me. But I

thought the procedure was too risky, as did my husband and other
family members, so I gave up on that idea. Every individuals personal
health situation is different. You need to ask a lot of questions and
evaluate what really is feasible for you.
I want to be realistic about dialysisI want to let people know
that it can be awfulbut I also want people to know they can do it.
Dialysis is not so horrible; it is just the sitting here so long, the mo-
notony, what happens to you on these machines, the restrictions. If
you dont follow the restrictions you can really suffer. Dialysis doesnt
hurt. It is just boring as hell. Best thing to do is accept dialysis and
then leave it. Leave it where it is.
What advice would you give to someone who is new to dialysis?
Be patient. Learn as much about this machine as you can. Learn
how to cope with being here and the illness that you have. Realize
that you have to do this to survive. Make sure that you like the per-
sonnel, and they are knowledgeable about what is going on. Always
be alert and aware of your surroundings as well as your care. It is im-
portant for people to explain to you what they are doing while they
are doing it. It is important for people to treat you with respect. If
you arent nding this, if you dont feel like you see the doctor
enough, if no one asks you how you are feeling, then something is
wrong. If something is not right, if you are not happy with your
clinic or the technicians speak up or change your situation. At our
clinic we have a patient advocacy committee, which is helpful. If we
do have problems, we can bring them up without fear of retaliation.
Specically, Donnas comfort level improved dramatically when she
changed dialysis clinics after a year of treatment. At her rst clinic, as
she became more knowledgeable about what the technicians should
know, she became increasingly dissatised. She did not like, for exam-
ple, how the patients who were very elderly or less alert were cared for.
On the other hand, she really liked her doctor and was hesitant to
change clinics. She gave the clinic a year, but ultimately decided the
patients there were not treated with the dignity and respect they de-
served. She felt it was up to her to improve her situation, and so not
only did she change to a new clinic, but she also became an active par-
ticipant on its patient advocacy committee.
Are there any tricks youve learned that help you manage your diet
and your liquid intake?
I battle with that every day ! I like to be happy. The liquid restric-
tion is the hardest part. Im always a little thirsty. Plus I like instant
gratication, so if Im thirsty I like to drink! But if I drink a lot, of
course, I have a worse dialysis session. When you put on too much
liquid, they set the machine to take off more liquid more quickly.
Your blood pressure can drop and you can suffer from cramping.
This is not pleasant at all; you feel awful. It is best not to do it. I
would advise anybody, try your very best not to drink too much !
Do you do anything in your routine that makes dialysis easier?
First of all, I like to come when the soap operas are on. That makes
dialysis go faster for me. Nextand now you are going to laugh at me
when I tell you thisI lead a double life. When I leave dialysis I try my
best to forget about it. I try very hard not to talk about dialysis or even
think about it on the days when Im not here. Another thing I do is
bring along this doggone blanket. It gets cold in here! One more thing
that helps with dialysis is building a sense of community at the clinic.
Ive made an effort. You see these people so many hours every week.
Forming relationships with the people here makes it easier to get
through this thing. Dialysis seems to be more pleasant too if you know
where you are going to be sitting every day and if you get to know your
neighbors. That way you have someone to talk to, or borrow money
from for lunch or even rely on if something with your treatment is not
quite right. If that happens you can tell a neighbor, and they can help
get the technician.
What do you do when you arent at dialysis?
Im not one to do a lot of things recreationally. Most activities
cost money, and Ive never had a lot of that. Basically I go to church.
Im the church treasurer and as the treasurer I get to interact with a

lot of people on the days when Im not here. I like to go to Reno and
play the slot machines! Joe and I, we go out to eat all the time. I
spend time with my grandkids. I watch them play basketball or take
them to play video games. I try to take part in making sure that they
are raised properly.
What are the key success factors to living well on dialysis?
You have to keep a positive attitude. When you dont have a
positive attitude it just makes it worse. I dont deal in negatives.
The negatives hurt too much. I try to tell myself Im going to be
here four hours, and I thank God every time I walk out that door.
I consider it a good day every single time I walk out that door. I
think it is best to try to smile and get along with people and will
usually try to talk to new people when they come in. Just because
you are in a bad situation doesnt mean you cant reach out to peo-
ple. My grandmother always told me it doesnt cost you a nickel to
be nice to anybody. Some people dont do very well. They cant
deal with dialysis. You can tell who they are, because they dont say
much or converse much. They look into outer space and drag out
of here.
What have been the biggest challenges about dialysis?
Sitting in this chair for so long. I like to be up and doing things.
I like to be able to do what I want when I want. In the beginning
I didnt expect it to be as demanding as it is. Often its a hassle, wak-
ing up, waiting for the cab, getting here, waiting to be called in.
The routine can be awful, the monotony of it, sitting in this chair,
dealing with these people. And Im a person who gets along with
everybody!
Have you been hospitalized since starting dialysis?
Yes once, when I broke my arm. Your bones get very brittle on
dialysis. I slipped on some water and broke my arm in multiple
places.
Has your love life been affected by dialysis?
With my husband? It hasnt affected him at all! Hes not on Via-

gra either! Or if he is on Viagra he didnt tell me about it! No, Ill be
honest here, I do get more tired, and I dont feel amorous all the
time. My husband does get upset about it. I tell him that Im just
tired. Sometimes you are just tired, and your mind is simply set on
feeling better. I dont think he is as satised as he could be. I have
gotten a little more selsh, but have also learned that sometimes I
just need to chill out and go with the ow. I really tried to get him to
look at our relationship as a brother and sister relationship instead,
but for some reason he wouldnt go for that!
Have you traveled while on dialysis?
Sure. Ive been to Detroit a couple of times. Ohio. Nevada. I di-
alyze at different places. I wasnt really nervous. The facilities are so
similar. Im just glad to be able to do it. Thats the good thing about
dialysis; there are clinics all over. In Detroit it looks like there is a
dialysis clinic on every corner. I go to Portland once a month to visit
my son and grandson. I always go back to the same clinic there. Im
comfortable there. Im going to Las Vegas in August. Joe and I won a
trip! We also take the grandkids down to Monterey once a year and
we take them to Big Sur. This year were going on a shing trip. We
usually go to the coast on the weekends and I make sure Im back for
dialysis on Monday. One thing Ive found about traveling that can
be difcult is sometimes you have to share a TV; you arent the regu-
lar so you dont get the remote or the power to choose the program.
Plus, you have to go whatever hours theyll take you. If I go at ve in
the morning I have to adapt. The treatment is longer for me without
my soap operas to watch.
Any parting words that you think would be helpful for people to
know?
A lot of people in my church know that Im on dialysis, but I be-
lieve they wonder why Im still walking around. Nobody under-
stands what dialysis is until they sit down in this chair. Recently I
read a quote by a little girl with kidney failure who said, I wonder
why they call it dialysis instead of life-alysis. I wonder about that

too.
Now that the interview has concluded, Susan thanks Donna for
her time and asks what Joe is bringing today for lunch. A ham
sandwich, she says then adds, Sometimes you get tired of sand-
wiches in here too. She smiles, chuckles, and ips on the overhead
television to her favorite soap opera, appropriately titled One Life
to Live.
Shedding Light on Our Most Common

Misperceptions about Dialysis
As Donnas story reects, most of the world knows very littleor

even nothing at allabout renal dialysis and that probably includes
or included you once upon a time. The average person on the street
might be able to tell you that it is a medical procedure, but chances
are that most people know about as much about dialysis as they do
about nuclear fusion. What it is exactly, who it affects, and how it is
used are rather vague concepts for most of us whove had very little
reason to learn about kidney disease.
This relative ignorance really is not a problem, provided you or
someone you love doesnt ever actually need dialysis. Surprisingly
enough, though, according to estimates by the National Kidney Foun-
dation, in 2006 one in nine people in the United States suffer from
kidney disease and almost half of these people dont even know it.1
Contrary to Donnas experience, dialysis has a tendency to sneak up
on many people without much or even any warning at all. As another
patient reected, When I was rst diagnosed, I just thought that I
had the u. I was running a fever all the time and feeling tired. I went
to the doctor thinking shed give me some medicine, and Id be ne.
Instead, the doctor gured out that my kidneys were failing and put
me on dialysis immediately. I was really scared. I didnt know a thing
about dialysis. I even told my husband hed probably have to divorce

me, because I was going to be on dialysis. Looking back now, I realize
I really didnt have a clue what it meant.
Sixteen years later she is still happily married and living on dialy-
sis. Her story is a perfect example of how a general lack of knowledge
combined with an unexpected introduction to dialysis can lead us
to arrive at mistaken and upsetting conclusions. Family members
and patients new to dialysis many times rely on misinformation or
pieced-together notions of what they vaguely know or have heard
about dialysis. This is completely understandable. But for those
who are new to dialysis, this is not particularly helpful and can be
frightening.
Amazingly enough, stories of being blindsided by dialysis are not
uncommon. But what about the people who have been told in ad-
vance that they may have to go on dialysis at some point in the fu-
ture? Arent they more informed and less frightened when the rubber
nally meets the road? As we saw with Donna, this is not necessarily
the case. Denial is a very powerful thing. And for better or worse,
many people choose not to learn about dialysis until it is no longer
unavoidable and they nd themselves hooked up to a machine. That
leaves them in the very same predicament as the woman who equated
dialysis with divorce: knowing very little and, in many cases, assum-
ing the worst.
Another example of this is our friend Jim, whom weve met
through dialysis. Jim is a middle-aged gentleman with a high-school
education who went on to become a very successful self-made busi-
nessman. He admitted to us that the rst time he received dialysis he
didnt understand what was happening. He had neither read about
dialysis nor been given a thorough introduction to it by the medical
professionals hed met. In fact, as he watched his very lifeblood leav-
ing his body, an overwhelming sense of fear came over him. He
imagined it was departing, never to return again. At that very mo-
ment he tells us he at out wanted to die.
Watching his blood being sucked out of his body and not under-
standing where it was going or what the machine was doing with it,
Jim felt lifeless, helpless, lost. He couldnt imagine that a life de-
pendent on a machine was worth living. It sounds quite bleak. But
the important take-away message is that Jim had very little informa-
tion about dialysis. All he had were the sights and sounds of that rst
treatment. Other than that he was really very much in the dark. The
good news is that you dont have to be. The more you know the
more you will be able to approach dialysis for what it is: a life-saver,
not a life-ender.
Another patient told us that the rst doctor who explained dialy-
sis to him described it as being attached to a machine for the rest of
your life. Again this patient thought in literal terms, and for him
this was a terrifying statement. The idea of literally lugging around a
machine day and night can depress the hell out of even the most op-
timistic of individuals.
If someone just told us straight up what dialysis is all about,
maybe then it wouldnt be so frightening, confusing, or overwhelm-
ing. So lets turn the tables on the most common misperceptions and
tell it like it is. You might be surprised to hear a realistic depiction of
what life on dialysis is really like.
Misperception #1 (The biggest one of them all): Kidney disease is a death

sentence.
Im done. Finished. Finito. Adios. See ya. Thats probably what
crossed your mind at one point or another when you heard the doc-
tors use the words End Stage Renal Disease (ESRD) to describe
your irreversible kidney failure. Who can blame you? Its not a huge
leap from end stage to the end.
Reality #1: Your life is not over. You are simply beginning a new chapter.
In this age of politically correct terms, it is astonishing that end
stage is still prevalently being used to describe denitive kidney failure.
In our interviews with many renal health care professionals and pa-
tients, we asked if they felt that end stage was an accurate term for the
disease. What we often heard back was Absolutely not! Most went on
to emphatically say that kidney failure and dialysis are not death sen-
tences. This is really, really important so in case you are skimming this
book we are going to say it again: Kidney failure and dialysis are not
death sentences! If you are brand new to dialysis this should be your
mantra for the rst six months. You should also remind yourself re-
peatedly that no one has died and especially not you. In fact, whether
you believe it or not, dialysis is providing you with a new lease on life.
How you use this new lease is in a large part going to be up to you.
The dialysis patients we interviewed prior to writing this book
worked, studied, bore children, raised children, traveled, volunteered,
loved, and lived all the while undergoing hemodialysis three times a
week or peritoneal dialysis daily. When asked what they would tell
patients new to dialysis, several said, Id tell them that it is going to
be OK. Or as one patient whod lived for years via transplant and
dialysis so eloquently put it, You can be greater than your illness.
You can live with this. It is not the death sentence that it was years
ago. And as technology improves your life can get better.
Now that weve acknowledged that the term End Stage Renal
Disease is a misperception waiting to happen, what to do about
it? Labels and names can have a powerful inuence on our self-
perceptions. In fact, we think its time to do away with end stage.
Instead, for the purpose of this book and for your mental well-being,
we choose to call it nonfunctioning kidney disease. We nd this to
be a much more appropriate title, because as the patients we met
would tell you, and as their stories throughout this book will show
you, you can live a full and wonderful life without the use of your
kidneys.
True. Your life will change. Signicantly. Many patients and med-
ical professionals have likened dialysis to a second joba very im-
portant job that you must take incredibly seriously and always show
up for. This is extremely difcult for many people to digest at rst,

but with time you will become accustomed to this lifestyle change.
For those of you who have children, you could compare this transi-
tion to what you experienced in your life before kids versus your life
after kids. Just like a new infant who arrives in your home and sud-
denly becomes a top priority in terms of your time, attention, and
care, so now does your dialysis treatment.
Suddenly your life is no longer solely dictated on your terms.
Spontaneity takes a back seat to planning, timing, and scheduling.
You will need to spend many hours a week devoted to the mainte-
nance of your health. You will likely need to change what you eat
and drink. Minor infections and illnesses may have a greater effect
on you than on an otherwise healthy individual. You will have good
days and not so good days, but the thing to remember is you will
have good days. Many of them. In fact, as each year passes, more in-
dividuals are able to live longer, fuller lives despite kidney failure. As
our friend Jim found out over time, life went on and dialysis wasnt
his entire existence. He was even able to continue traveling and hav-
ing success in his line of work. However, he looks back now on his
introduction to dialysis and wishes he had been more informed from
the start.
The key to enjoying life even while on dialysis is to focus your at-
tention and energies on the time spent away from dialysis, just as
Donna does by leading her so-called double-life. As another exam-
ple, Daniel spends nine hours weekly on hemodialysis. In addition,
he has about four hours of recovery time after each of his dialysis ses-
sions. That equates to a total of twenty-one hours a week spent on
dialysis or recovery from dialysis. Here is the bottom line: less than
one day out of his week is spent on expending physical or mental en-
ergy on dialysis. Daniel takes an out-of-sight, out-of-mind ap-
proach. He chooses not to think about dialysis except during those
hours. All the other hours, or six days a week, are spent focusing on
his family, friends, work, and play. When you put it in those terms,
the six days a week made possible by dialysis, as opposed to the zero
days that would result without treatment, are a fairly good deal.
Of course, every individual is different and Daniel is just one ex-
ample of someone living with dialysis. There are individuals who
are battling extremely debilitating chronic illnesses or who have sig-
nicant difculties with tolerating the permanent accesses for he-
modialysis, also known as stulas or grafts, or who continuously fall
ill with infections from peritoneal dialysis. We dont want to mini-
mize the seriousness of their trials. Unlike them, Daniel is compar-
atively healthy. His veins are able to accommodate a permanent
access and he tolerates hemodialysis well. Aside from his lack of kid-
ney function, he is relatively illness free. If luck is on your side and
the complications you face are minimal, your experience might not
be entirely different from his. Of the patients who do well on dialy-
sis, they will all tell you that keeping busy and having other interests
outside of dialysisfriends, family, work, or hobbiesis the key to
their success.
And what about the idea that you will be attached to a machine the
rest of your life? Well, depending on the form of treatment that you
and your doctors select, you will be attached to a machine for a num-
ber of hours weekly until a time, should you so choose and be eligible,
that you receive a successful transplant. That is the truth. You will
need to organize your life in order to be able to access these machines
as needed. You wont have the exibility you once enjoyed to do what
you want whenever you want. But with a bit of planning and juggling
you will nd that much of what youd like to do can be accommo-
dated. And the truth is you will not be 100% attached to the machine
morning, noon, and night, seven days a week, fty-two weeks a year.
In reality it is, as an example, more like nine to twelve hours weekly
if you are on hemodialysis or every night while you sleep if you
perform a type of peritoneal dialysis. Although not preferable, not
something you wished for, or as one patient said, not something

youd wish upon your worst enemy, this is manageable. Or as another
patient told us, At some point, I realized that the days between treat-
ments I was able to do things that Id not been able to do before I
started dialysis. So I had this every-other-day life and I had my week-
ends. I think you start from this very narrow picture and as you feel
better the lens widens.
Misperception #2: Dialysis is to be feared and is a total downer.

Watching your blood exit and reenter your body through needles
and tubes will initially frighten and depress you. Especially in the
beginning when you are becoming accustomed to your new routine,
it is easier than not to dene yourself as a dialysis patient rst and a
human being second.
Visiting a dialysis clinic is also sobering and frightening at times.
You may encounter elderly patients who are senile. You may see in-
dividuals who are suffering from a variety of serious illnesses that
have resulted in their kidney failure. Some may have amputated
limbs and others may have lost their hair. Again, being surrounded
by so much illness, it is hard not to feel like an invalid. Why else
would you be there if you did not have something seriously wrong
with you? And if something is seriously wrong with you, then isnt
that now your most self-dening characteristic?
It is not a huge jump from fear to depression. Wed be naive not
to acknowledge how easy it is to feel sorry for yourself under the cir-
cumstances. In fact, weve been there, as have many of your fellow
dialysis patients. You may be anxious about the future and about
whether you will live or die. You may be anxious and depressed
about how others will perceive you. If you are a sick person, wont
everyone treat you like a sick person, someone less than you really
are? If going forward, your new role is to be a dialysis patient rst
and foremost, then what about the person you used to be? You may
be upset about your dietary and liquid restrictions. You may also be
angry about the fact that you got stuck with this raw deal. Of all
people, why you? Why kidney failure?
Reality #2: Dialysis is keeping you alive. You do not need to be dened
by your illness.
Just about every individual who goes on dialysis will ponder these
questions at one point or another. Of course, there are a few eternal
optimistsweve even met a fewwho never let dialysis get them
down. But if you arent in that camp you should know that all of
these emotions are 100% normal. The key here is not to get stuck in
a rut and to dwell on them. Later in the book we will discuss how to
conquer these emotions or at the very least mute them. In the mean-
time, lets present an alternative view.
Just because you are on dialysis doesnt mean you are now simply
a dialysis patient waiting around for a miracle cure to jumpstart your
life. If you are waiting, you are likely wasting valuable time. It is im-
portant to remember that your kidney function is one part of a
much bigger whole. Before your kidneys failed you, you probably
had many qualities and interests that dened you as a person. Per-
haps you loved to cook or to dance, or you were an avid sports fan, a
loving parent or grandparent. Now that you use a machine to per-
form a function that your kidneys used to do, does all or even any of
that need to change? For the most part, probably not. Chances are
you can still do most of the things that make you who you are. Sim-
ilarly if you do not obsess about dialysis, talk about it all the time,
make it your entire reason for being, those around you wont think
about it much either.
We arent advocating that you dont talk about the changes that
you are going through, but it is important to be aware of the line
that exists between therapeutically talking and wallowing. Much of
what you are experiencing is out of your realm of control, but your
attitude and the way you react to these challenges are something you
can control. As one dialysis technician told us, The patients who do
well on dialysis bring a positive attitude with them when they walk
in the door. Conversely the ones who dont do well and really strug-
gle with dialysis just cant seem to leave the pity-party behind.
Going to dialysis may broaden your horizons and test your ability
to be positive in the face of adversity. It may give you a different per-
spective on life, albeit sometimes a legitimately sad and depressing
one. But one thing is certain: dialysis will enable you to keep on liv-
ing, doing many of the things that you enjoy, and spending time
with those you love, for which most dialysis patients eventually are
extremely grateful.
Misperception #3: Your only hope for regaining a meaningful life is to

receive a kidney transplant.
For most doctors and other medical professionals, as well as for
patients, the preferred form of treatment for irreversible kidney fail-
ure is a successful kidney transplant. As one doctor said about trans-
plantation, There is no doubt based on excellent national statistics
that the quality of life is improved, the health of the patient is better,
and longevity or prognosis for life is extended. But as Donna pointed
out, not everyone is a candidate for transplantation and everyone
needs to be evaluated as an individual. If you are ineligible or if you
are in fact eligible and are then put on a waiting list to receive a new
kidney, what does that mean for you in the meantime? Should you
put your life on hold?
Reality #3: The more you live now, even without a transplant, the better
you will do emotionally.
A discussion of dialysis and transplantation go hand in hand.
Dialysis can be life sustaining, as can a successful kidney transplant.
Both are the only two viable solutions when dealing with chronic,
irreversible kidney failure. Making the decision about whether to
pursue a transplant is an important one, and it is something that
every dialysis patient should consider and weigh carefully. If you, your
family members, and your doctors decide that a transplant will in-
deed improve your quality and longevity of life, then it is important
to remember that it will likely take time for a match to be identied.
In the past, transplant patients would hope that an appropriate non-
living donor would eventually be identied. More recently, though,
the medical arena is seeing an increasing rise in related and nonre-
lated living kidney donors, which for certain fortunate individuals
may decrease the amount of time spent waiting to locate a match.
Waits can range from days to months to years, but the norm for most
waits is years. Therefore, even if you are pursuing a transplant and
are looking forward to one with great anticipation, a complete un-
derstanding of dialysis and how best to live while on dialysis will
serve you well until a match is found. If you are always living for the
future, you may be missing out on opportunities for joy and satisfac-
tion in the present.
Remember the fairytale tune that starts, One day my prince will
come. Eventually the prince does come. He rescues the princess and
nally they live happily ever after. Supposedly she was unhappyor
fully asleepuntil he showed up. Does this seem like a waste to you?
Snoozing away your life waiting for the prince to show up? Well, the
same is true for a successful transplant. Optimists at heart, we hope
you will get that much desired and awaited happier ending should you
choose to be placed on a transplant list. But in the interim, dialysis is
very much keeping you alive. So now is the time to be living.
Misperception #4: Your medical care is dictated to you.

Most of us are accustomed to deferring to authority gures. We
learn to do this at a young age with our teachers and our parents. If
someone is trained to know more than we do, we often assume that
knowing more automatically means knowing best.
We also often believe that we have no control over our circum-
stances. In your case, for whatever reason, your kidneys have failed
and that unfortunate event was out of your control. Surely whatever
else happens to your health in the future must be equally out of your
control.
Reality #4: Not so! You are an active participant in determining and
managing your medical care.
Doctors and medical professionals who work with renal patients
arent always perfect. As with any profession, the range of caregivers
in renal services can vary from outstanding to poor. And so it is im-
portant to remember that when it comes to your health care and
your physical well-being, your number one advocate is you. As we saw
with Donna, she made it her business to learn about the different
levels of care that existed at different facilities. When she felt that her
facility was less than optimal, she took control and made a change,
and as a result she was much happier and more comfortable with life
on dialysis.
Bear in mind, most medical professionals are excellent and have
only your best interest at heart. However, when you are relying on a
machine for survival, the more you know about the machine and
your care, the better you will be able to assist and partner with the
medical professionals around you. Rather than looking at dialysis as
something that is administered to a patient by authority gures, it is
best to shift our mind-set to view it as a partnership between patient,
technology, and medical professionals.
One dialysis technician mentioned to us that because dialysis af-
fects a large percentage of individuals in the Hispanic community,
there are sometimes cultural biases that stand in the way of this men-
tal shift. This particular technician was Hispanic himself. He was
very involved in educating his local community about dialysis and
nutritional prevention as well as in lobbying for federal funding for
food subsidies specic to dialysis patients needs. In his view, indi-
viduals in the Hispanic community who are either new to the
United States or are rst generation U.S. citizens are so grateful that
dialysis is even available that they sometimes dont feel entitled to
challenge or raise questions about their quality of care. Whether or

not you are a member of this community, you may nd yourself feel-
ing this way as well. If so, we recommend that you work to overcome
these views. This is after all your life and you are absolutely entitled
to speak up on your behalf.
You also have a responsibility to take charge of the daily aspects of
your life over which you do have control. The machine can make up
for only a small percentage of what would be considered regular kid-
ney function. While youll never regain a level of function akin to
someone with kidneys working at 100% capacity, the remaining per-
centage of functional improvement is largely dependent on how well
you manage your diet and uids. You can, in other words, do a lot to
make your quality of life better. And just as managing your diet and
your liquids is in your hands, you also have considerable control over
the doctor you see, the clinic you frequent, and the treatment op-
tions you choose.
The patients, doctors, technicians, social workers, and dieticians
that we interviewed all consistently told us that the more a person
learns, asks questions, and actively participates in his or her care, the
better the person does both physically and emotionally. You are put-
ting yourself and your life into the hands of others on a daily and
weekly basis. As a result, many patients nd that the more they un-
derstand about the actual machine and the process, the more they are
able to relax and to feel less anxious about their treatment. For exam-
ple, one woman we met said that when she rst went on dialysis she
wanted to know everything she could about the machine. Having
worked as a medical technician herself, she asked to read the techni-
cal manual. She read it cover to cover and now understands what any
particular beep or ring means. She says knowing this information has
put a great number of her fears at ease. This is an extraordinary ex-
ample and we certainly dont think every dialysis patient needs to do
the same. However, we do advocate that, like this patient, you take
whatever steps are necessary to make yourself feel more comfortable.
Another dialysis veteran told us he would give these words of ad-

vice to someone new to dialysis: Get as much information as you
can. There are a lot of things that will be done for you and to you
that are not always explained very well. Make sure that when you are
having your initial appointments about dialysis that you have some-
one there with you who can keep track of everything that is being
said. Really get a handle on the labs that they give to you. Under-
stand what they mean. Ask questions and educate yourself as much
as you can. Of course, you cant expect to fully control or adminis-
ter your treatment and at some point you will have to put a certain
amount of trust in the professionals and let go. (Or you will be in
jeopardy of driving your nurses and technicians batty!) But at the
same time, trust your instincts. If you are concerned about some-
thing, absolutely feel free to ask questions.
Many other patients echoed this advice and told us they had
learned to continuously ask the nurses and technicians questions
about what they were doing and why they were doing it, until these
patients eventually amassed personal libraries of knowledge suf-
ciently comforting for them. Some patients mentioned that being
educated about their typical dialysis settings and requirements made
it easier for them to travel and receive dialysis at other clinics. Why?
Because they felt they knew enough to be able to speak up if they
sensed that the care or treatment they were receiving didnt mirror
the same experience that they were accustomed to at home.
Misperception #5: You can no longer work or study.

Prior to beginning dialysis treatments you may have been feeling
worse and worse as your health declined. Depending on the kind of
dialysis treatment you choose, you may nd that the time needed to
tend to your health and recover from your treatments cuts into your
regular work or study schedule. Many dialysis patients suffer from
serious illnesses that are the cause, rather than the result, of their kid-
ney failure. For them, often their illness or pain can be debilitating
and may prevent them from working. Many elderly individuals, who
are well beyond retirement, may suffer from kidney failure. In their
case, work or study is not as relevant. The combination of these two
groups of individuals can skew the national statistics to appear as if
work and study are not an option for many or most renal patients.
Again, this can be misleading.
Reality #5: Many dialysis patients do continue to work or study.

When you go to a dialysis clinic and speak with many of the peo-
ple who fall within the age group of the working population, you will
nd that a signicant number of them manage to work, study, and
raise children despite the restrictions that dialysis places on them.
And youll nd many patients who cannot work for hire but seek out
volunteer opportunities that enable them to grow as human beings,
keep their minds active, and help others.
Culinary student, insurance adjustor, pastor, architect, construction
worker, retail manager, volunteer, full-time mother, doctor, salesman
these are just some of the professions we encountered when talking
with different dialysis patients. Dialysis doesnt mean that youll have to
sit home all day and watch television. One nurse who works with hun-
dreds of dialysis patients told us that of the dialysis patients she
encounters, she estimates about one-third work, one-third could be
contributing but are not, and the nal third truly are unable to do any-
thing. This nurse emphatically said,
Diagnosis of kidney failure does not indicate disability. For

example, if you are young and have polycystic kidney disease,
but the rest of your body is in relatively good shape, then why
cant you work? Work is good for you and for the country. On
the other hand, someone who has multiple issues, maybe no
legs or chronic infections, and is in and out of the hospital
sometimes in more than outthat person isnt going to work.
In those cases disability is justiable. Sometimes patients give
up too quickly and decide too quickly that they dont want to
work. It is important for caregivers to ask their loved ones,
When are you going back to work? When are you going back
to school? If we treat people like invalids they are more in-
clined to become invalids.
You may, however, need to make some adjustments to your work

schedule in an effort to accommodate your treatments. Or you may
be in a line of work that you simply nd you can no longer do.
First, know that you can likely still earn money, and at the very
least, you can still do something that enables you to grow or be a
contributing member of society and your family. Donna, as a com-
mitted volunteer, was a testament to this fact. Scores of dialysis pa-
tients derive excellent self-esteem and an abundance of joy from
their work. Or as one gentleman reected on his life on dialysis,
I wanted to maintain as normal a schedule as I could and I did

not want to go on disability. I spoke with some people who
were enjoying themselves on disability and I thought how in
the world do you do that? That sounds like retirement and Im
too young to retire! It made a world of difference for me to
keep my job. It helped me maintain my sense of worth, kept
my income up and preserved a strong sense of identity. Having
work that was still vital helped me to know that I was still OK.
Some days you may literally have to drag yourself to where you
need to be, but if you can tough those particular days out, overall the
emotional benets of working or volunteering far outweigh the
negatives.
Misperception #6: Traveling is out. You are grounded for life.

In the twenty-rst century more and more families nd themselves
spread around the country and even the world. Where does that leave
you, if you now nd yourself on dialysis? How are you going to see
your siblings, parents, friends, and children who do not live within
driving distance? Will they have to come to you? Orif you are
one of the few lucky ones who have managed to keep all their loved
ones close to homewhat if you had dreams and aspirations of
leisure travel? It will be difcult and frightening to leave the com-
fort of your dialysis routine at home. Traveling for fun doesnt
sound so appealing anymore, now that you need dialysis to live.
The benets of travel cant possibly outweigh the hassles of nding
a clinic, dealing with travel delays when you are tied to a dialysis
schedule, or encountering health complications away from the med-
ical team that you know. Therefore, travel must be limited or cur-
tailed entirely.
Jeffrey had been on dialysis for a little over a year when we met
him. He was about to become an empty-nester with his second child
going off to college the following year. He told us that one of the
hardest things for his spouse was to face the possibility that they
would no longer be able to do many of the things they had dreamed
of doing after the kids were out of the house. This included the free-
dom to travel. He acknowledged that he knew it could be done, and
in fact, hed gone to a dialysis clinic in Kansas while visiting his fa-
ther who coincidentally was also on dialysis. But, he said it was scary
for him to go to a new place where they did not know him or his
dialysis routine. He took a great deal of comfort in the fact that he
was going to the clinic where his father was dialyzing. He knew his
fathers experience there was a good one. That calmed his fears con-
siderably. Although he commented if it hadnt been for that, he
didnt know if he would have ventured away from his regular clinic
so soon.
Jeffreys ambivalence to travel and his wifes disappointment over
having to shelve some of their dreams are neither uncommon nor
difcult to understand. These are all reasonable fears, but again they
are largely a fear of the unknown. The more you know about travel,
the less likely you may be to put your dreams on hold.
Reality #6: Put those travel shoes back on! You can still travel to most
places in the developed world.
Texas, California, New York, Argentina, Mexico, Jamaica, Israel,
England, and aboard a ship in the Atlantic Ocean. These are just a
few of the places that Daniel has visited and received dialysis treat-
ments. Did you know there are worldwide cruises that offer dialysis
on board? Travel while on dialysis can be done and more important,
it can even be enjoyed. There is one critical caveat: Medicare will
cover only 80% of the cost of dialysis treatments outside of your
home state and Medicaid will cover only in-state dialysis. Neither
Medicare nor Medicaid will cover international treatments. There-
fore, if you are on Medicare and wish to travel outside the United
States or your state, you will either have to pay out-of-pocket for all
or a portion of the bill, which can be very costly and for most people
is not possible, or you will need to have a secondary insurance pro-
gram that provides coverage. Again, for many people this is not an
option given the associated costs. Depending on your nancial situa-
tion, you may have to limit your travel to the United States or to your
home state. Fortunately we live in a great, gorgeous country with an
abundance of wonderful destinations and opportunities for explo-
ration in every state.
If you love to travel or if you have to travel, doing so while on
dialysis is not an activity for you to dread or avoid. Plus, the more
you make it your business to know your dialysis routine and to man-
age your care at home, the more empowered you will be to go out on
the road. While you may feel your clinic is the only one that will
make sure you are well cared for, in reality there are extremely com-
petent dialysis professionals and clinics all over the world. Addition-
ally, there are travel professionals and others who will go the extra
mile to help you get your treatments should travel delays occur.
Perhaps you saw coverage during the 2004 Winter Olympics of

U.S. Olympic sprinter, Lauryn Williams, whose father traveled to
Greece to see her compete. Despite his dialysis requirements David
Williams wasnt going to miss attending his daughters competition.2
The television crews documented him walking into a dialysis clinic
in Athens and then cut back to him in the stands cheering her on.
Now you might be thinking, Well, if I had a daughter competing in
the Olympics too, then sure Id travel for that. But it isnt happening,
so Im staying put. The point is, even if you just want to visit
Florida in the winter for no other reason than to get out of the cold,
or you want to visit your niece who is celebrating her third birthday,
those are reasons enough. You dont live to dialyze. You dialyze to
live. If you pass up opportunities to do the things you have dreamed
of, then dialysis isnt serving its intended purpose.
Certainly there are some remote or unsafe places that you wont
be able to visit like the boundary waters between the United States
and Canada or Antarctica, but we assure you there are plenty of fab-
ulous destinations left for you to go to easily. Sometimes we think if
we stick with the routine that is most familiar we will be safe and in
control. The truth is, if you are on dialysis or not, staying at home
and in your routine does not ensure that you will be safe or healthy.
Getting out and seeing the world or those you love, should you have
the desire, does ensure that you are making the most of the present.
Later in the book we will provide tips and tricks on how to minimize
your fears of the unknown when traveling and to create contingency
plans should anything go awry while you are on the road.
We hope that much of what youve read so far resonates with your
experiences or at the very least has provided you with helpful insight
into many of the generalizations surrounding dialysisthe good, the
bad, and the uglybut we dont intend to stop here. Several other
patients and medical professionals have shared their stories with us.
Each of their tales provides excellent ideas and suggestions for living
well on dialysis despite the very real challenges and the sometimes not
so real ideas surrounding this medical treatment. Now that you have
read both the loftiest and the most detrimental misconceptions that
exist, we hope you will be inclined to ignore them as much as possi-
ble. But if you do nd yourself listening to them, try to remember the
sage words of advice shared by many dialysis veterans, It is going to
be OK.
Two
A Visit to the Suds Factory

Demystifying the Machines
and Tubes
or most people, going to a hemodialysis center for the rst

F time is a bit frightening and overwhelming. This is true for both
patients and the family members who may be accompanying them.
The tubes, machines, blood, and needles can be daunting to a rst-
timer. In fact, it can be daunting for a good while. So we wondered
how we could take away some of the fear factor.
We once knew a young boy who was scheduled for a tonsillec-
tomy. Before the big day arrived his father took him to an orienta-
tion at the childrens hospital. The boy was able to put on gowns and
gloves, to taste the different avors used for the anesthesia, and to see
the tricycle that he would ride into the operating room. The goals of
this show-and-tell were to mentally prepare the boy and to ease his
fears of the unknown. Just because adults are older doesnt mean
they are any less frightened when it comes to undergoing medical
procedures. Shouldnt people young and old alike receive an orienta-
tion of what takes place in the dialysis clinic?
Many centers do provide educational guidance and tours to
patients before they rst start dialysis. Ideally, all patients new to
dialysis will have at least visited a center before they dialyze for
the first time so that they have a chance to absorb their surround-
ings and ask questions about the procedure ahead of time. Realisti-
cally, however, many patients never tour a clinic or attend a class
before their initial treatment. Or, even if they do, they may be
too sick, overwhelmed, or inhibited to inquire at length about
the sights and sounds around them. So we thought wed provide a
step-by-step account of what it is like to go through a hemodialysis
session at a centeror as we humorously like to call it, the suds
factory, because it is, after all, where a dialysis patient goes to get
clean.
In-center hemodialysis is far and away the most common type of
dialysis at present. To receive this type of dialysis a patient needs to
travel to a center, arriving at an appointed time assigned by the cen-
ters staff. Centers are located in towns and cities all over the United
States and the world. Typically, visits are scheduled three times weekly
on Mondays, Wednesdays, and Fridays or on Tuesdays, Thursdays,
and Saturdays. Most people will dialyze for three to four hours each
session, although some may dialyze longer. Even if you plan to pursue
peritoneal dialysis or a transplant (see Chapters 3 and 4 for explana-
tions and discussions of these alternative treatments), it is highly
likely that you will spend a period of time hemodialyzing in a center,
so our tour is recommended for all kidney patients and family mem-
bers who wish to understand more about what takes place there and
why.
On this verbal tour well try to describe and explain the before,
during, and after of a visit to the suds factory. Well cover a variety of
topics from what to bring with you, to why you step on the scale, to
how the machine works as an articial kidney, to what happens
when the technicians remove the needles at the end of the session.
And at the end of the tour, we will share the perspective of a key g-
ure in every clinic, a dialysis nurse.
A Visit to the Suds Factory 31
Before Dialysis
Understanding the Role of Kidneys and What

Happens When They Fail
Before you walk into a hemodialysis center you must be contending
with one inescapable truth: your kidneys are no longer functioning
properly, and as a result your health is deteriorating. Therefore, our
rst stop on this tour is to understand just what happens to you as
your kidneys tucker out.
Typically healthy kidneys perform four important jobs:
1. Filter and remove excess uid from the blood.
2. Filter and remove toxic impurities or waste products from the
blood.
3. Produce hormones that help control blood pressure, make red
blood cells, and promote absorption of calcium from the intes-
tines to strengthen bones.
4. Balance mineral and chemical levels in your body such as
sodium, potassium, calcium, and phosphorus.
As healthy kidneys lter out excess uid and waste products from
the blood, they create urine. These harmful excess uids and toxins are
then ushed from your body every time you urinate. But as your kid-
ney function decreases, so does your output of urine. Your body begins
stockpiling unhealthy amounts of poisons and liquid. One of the ma-
jor poisons is urea. The condition associated with a buildup of urea
is called uremia. Poor appetite, nausea, vomiting, itching, fatigue, and
confusion are some of the most common symptoms of uremia.
In addition to this abundance of urea, you are carrying around ex-
tra liquid, which is adding stress to your heart. At rst, this excess liq-
uid is being stored in your bloodstream. When your bloodstream lls
to capacity, liquid begins moving into your cells and tissues, which
can cause edema, uncomfortable bloating, and swelling throughout

your body. Eventually excess liquid can even build up in your lungs,
creating respiratory distress. At the same time, your production of
erythropoietin, the hormone healthy kidneys create to signal the pro-
duction of red blood cells, is diminishing and you are becoming in-
creasingly anemic. Being anemic can be likened to trying to drive a
car without any gas; you lack the energy reserves necessary to run.
No wonder most people feel like theyve been run over by a Mack
truck prior to beginning treatment. Starting to panic? Dont. Instead,
appreciate the fact that now there is a scientic man-made ltration
systemdialysis. Undergoing dialysis, and receiving modern-day
medications such as a pharmaceutical replacement for erythropoietin,
can signicantly improve your health.
Unfortunately, dialysis is not as effective as having a healthy kid-
ney, but it can get you part of the way there. As one doctor remarked,
Dialysis can only remove approximately 10% to 15% of the toxins
that normal kidneys can. Patients ability to adapt their diet, manage
their liquid intake and take their medicines plays on the ability of the
dialysis technology to give them a reasonably comfortable and suc-
cessful life. The dialysis technology cannot do it all. In order to live
well while on dialysis, you will need to do some of the work.
As your kidney health declines prior to beginning dialysis, your
nephrologist can use a mathematical formula based on a number of
factors, such as your age, gender, ethnicity, and blood level of creati-
nine (waste product of muscle metabolism, a chemical measure of
kidney health) to determine your glomerular ltration rate (GFR),
which is essentially a measurement of the health of the kidneys.
There are ve stages of kidney disease as dened by GFR:
Stage 1: kidney damage with normal GFR of 90 or above.

Stage 2: kidney damage with mild decrease in GFR at 6089as
an example, those who are hypertensive or diabetic may
be in this stage for years and years.
Stage 3: moderate decrease in GFR 3059.

Stage 4: severe reduction in GFR 1529at this stage you may live
without dialysis but your health may bottom out from
under you very quickly. Despite this, some people live
comfortably at this stage for a very long time.
Stage 5: kidney failure GFR rate of less than 15a person needs to
be on dialysis or receive a transplant to live.
The Goals of Hemodialysis

In preparation for your visit to the hemodialysis center, you should
have a basic understanding of the goals of this medical procedure.
They are twofold: rst to lter and remove the toxic impurities that
have built up in your blood and second to lter and remove the ex-
cess liquid that has built up in your body. To achieve these goals,
your blood will quite literally be removed from your body, cleansed
by a machine, also referred to as a dialyzer or an articial kidney, and
then returned back to your body. Only about one cup of blood will
be outside of your body at any time during this process, and you will
not experience any feeling or sensation of blood exiting or reentering
your body.
An Introduction to Your Lifeline

In order to receive hemodialysis, you will need to have an access, also
sometimes referred to as a lifeline, built to deliver enough blood to
the dialyzer for cleansing. Your access is the site where your blood will
exit and reenter your body. There are two categories of accesses: per-
manent and temporary. First, lets outline the major differences be-
tween these two categories:
1. Most important, permanent accesses allow for more efcient
dialysis by providing a greater blood ow than do temporary ac-
cesses. This means that often patients will feel substantially bet-
ter if they are dialyzed with the use of a permanent access.
2. Permanent accesses also have decreased risks of infection and last

much longer than temporary accesses.
3. Permanent accesses require minor outpatient surgery and ample
time to fully become established and heal before they can be put
to use. Temporary accesses can be used immediately.
4. Permanent accesses are typically constructed in a patients fore-
arm but can be created in the upper arm or leg as well. Tempo-
rary accesses are placed in the neck or groin.
For long-term treatment, permanent accesses are the preferred
option. Ideally, patients will be followed by a physician throughout
the course of their renal decline and will have a permanent access
created several months in advance of when they will actually need to
begin hemodialysis. Of course, many people are not followed care-
fully, or their nal renal decline happens faster than anticipated, or
their illness isnt discovered until they need dialysis immediately. In
those cases a temporary access is the next best option. Now that you
understand the major differences between a permanent and a tem-
porary access, lets explore the specic types of accesses within each
category.
Permanent Hemodialysis Accesses

There are two main types of permanent accessesarteriovenous
(AV) stulas and grafts. To understand the differences between the
two, we must rst understand the primary difference between an ar-
tery and a vein. An artery is a blood vessel that carries blood away
from the heart. A vein is a blood vessel that carries blood toward the
heart. Imagine two parallel highways transporting your blood in dif-
ferent directions. The most efcient way to improve the rate of
blood ow in and out of your body during dialysis is to connect
these two highways. How these highways beneath your skin are con-
nected is the primary difference between a stula and a graft.
Imagine a vascular surgeon pulls the parallel highways together

so that they somewhat resemble an X. The vein and artery are now
connected directly at the center of the X. This is essentially what an
AV stula looks like beneath your skin. Now imagine a vascular sur-
geon attaches an artery indirectly to a vein by using a small plastic
tube. In this case, the actual connection between the two highways
resembles more of a U shape with the highways running lengthwise
up and down each side of the U. This is essentially what an AV graft
looks like beneath your skin. In the end, a stula or graft may or may
not exactly resemble the X and U congurations above, but we use
these examples to help you visualize the constructive differences be-
tween the two.
Other important differences between stulas and grafts are these:
1. Usually it takes a few months for the stula to develop before it
can be put to use, whereas a graft is most often ready in a few
weeks.
2. On average, stulas have lower rates of infection and clotting,
last longer, and provide better overall performance than grafts.
In general, stulas are considered to be the best type of permanent
vascular access. However, some patients have medical conditions that
prevent the use of a stula. For example, a patients veins may be too
delicate to be connected directly to an artery. In this case and others
where a stula isnt an option, a graft is the next best choice.
A vascular surgeon will decide which type of permanent lifeline
you are best suited for. The surgeon will perform an outpatient pro-
cedure to create your access with the use of a local anesthetic or, as is
more common, with intravenous sedation or general anesthesia. You
will likely experience some pain and swelling for several days or
weeks after undergoing the procedure. In time, your lifeline will be
ready for use, and in the interim if you need to be dialyzed a tempo-
rary access will be used.
Temporary Hemodialysis Accesses

Temporary accesses are often used when a patient is waiting for a
permanent access to heal, when a patients veins or arteries cannot
accommodate a permanent access, or when a patients permanent ac-
cess has failed. Even though they are called temporary they remain in
place and are not removed until the permanent access is ready for
use. A catheter, a exible hollow tube, is inserted into a vein in the
neck or groin. In the neck the catheter may jut out directly or a
catheter may exit through the chest via a subcutaneous (under the
skin) tunnel that serves to prevent infection. Catheters in the neck or
groin must be kept clean and dry at all times, which renders swim-
ming or bathing off limits. Until a permanent access is in place, a pa-
tient will need to use a special protective device in order to shower.
Last, catheters are then connected to the dialyzer without the use of
needles.
Having your permanent access built or your temporary access in-
serted is a critical step in the before part of our tour. Once this has
been accomplished you may want to begin thinking about what you
would like to bring with you to your dialysis sessions.
Packing a Bag for Dialysis: What to Bring

To assist you in packing a small bag or backpack weve broken our
recommendations into four categories: how to stay occupied, com-
fortable, satised, and relaxed.
How to Stay Occupied

Some people like to read, watch TV, do crossword puzzles, listen to
music, sleep, work, talk on their cellular phones, even play movies or
games on their laptop computers while dialyzing. Think about how
you might like to best spend your time. If you think youd enjoy
catching up on some back issues of magazines youve been meaning
to read, then by all means pack them up. Or if you nd music relaxes
you, then perhaps you could bring a CD or MP3 player and head-
phones with you. These are but a few examples. The point is that
planning ahead can make the time go faster.
How to Stay Comfortable

You are going to be sitting for three to four hours so be sure to wear
comfortable clothes. Sometimes at the end of a session when you are
being taken off the machine, it is not uncommon to get some blood
on your clothing. Therefore, we recommend you wear items that are
easily washable. Often people will feel cold during a session so feel
free to bring a cozy blanket with you. And if you want to try to sleep
while you dialyze, you might want to bring a soft pillow for your
head.
How to Stay Satised

Many times, people are squeezing dialysis into a busy schedule,
and as a result they might not make it to breakfast or lunch. For this
reason and others (for example, diabetics may have to eat) many cen-
ters allow patients to bring food. Check with your particular center
regarding their policy on food, and if they give you the go-ahead,
then pack a healthy snack or meal.
How to Stay Relaxed

Last, if you are feeling a little nervous or scared, bring a family
member or a friend to keep you company the first few times.
Again, youll need to check with your center regarding their policy
toward guests, but most centers will allow guests for different du-
rations of time. If you cant bring one of your nearest and dearest
with you, then perhaps bring the next best thing: a few photos of
your parents, partner, kids, or grandkids to keep you company,
give you comfort, and remind you just why you are sitting in that
chair.
A Final Check
Before heading out to dialysis, Daniel always checks the status of
his graft. He does this by feeling for a thrill, a vibration, which in-
dicates a pulse. A missing pulse is a sign that the access is not oper-
ating correctly. Twice Daniel has arrived at the center and there was
no pulse. On those occasions he had to return home without dia-
lyzing and immediately contact his doctor to determine what was
wrong and how it could be resolved. Both times Daniels graft had
clotted, meaning that the plastic tube had become clogged with co-
agulated blood. By performing a fairly simple outpatient procedure,
the radiologist unclogged his graft with a medical device just as a
plumber would unclog a pipe. Between dialysis sessions, Daniel also
checks his access for any sign of infection. If he were to notice any
redness, irritation, or tenderness, he would contact his doctor im-
mediately.
The Journey
Health and weather permitting, Daniel prefers to drive himself to
the dialysis center. He nds driving himself to be good for his self-
esteem and sense of autonomy. Margie also likes when he is able to
drive himself, but for different reasons. It makes her role as care-
taker less taxing. Over the years, she has adapted to her role well,
but she too likes her independence and enjoys when she does not
have to shuttle him three days a week. Similar to Daniel, many pa-
tients will drive themselves. But the ability to drive does not need to
make or break your sense of independence. In fact, we asked one
patient how she would manage if she couldnt drive. She just
shrugged and said, Well, if I couldnt drive, Id take the bus. The
bus will take you anywhere you want to go. Many dialysis patients
regularly receive rides from family or will take cabs, public trans-
portation, or transportation organized by social services. Determin-
ing a reliable and dependable mode of transportation is a critical
part of the planning process. The key is to nd and arrange for a

method of transportation that will consistently get you to the clinic
on time. Once this has been accomplished you will be ready to leave
home and head to the clinic.
During Dialysis
Waiting
Arriving at the clinic, you will check in at the waiting room. There
may be coffee or a place to hang your coat. There will likely be help-
ful pamphlets, recipes, or other literature available for patients.
Some clinics will allow you to simply pass through the waiting
room, go directly into the unit, and sit down in your spot. Others
will ask you to stay in the waiting room until a technician comes to
get you. Many patients do not like having to wait to dialyze. Theyd
prefer to get started right away. Waiting just adds extra time to the
whole process when theyd already rather be somewhere else. On
the other hand, waiting rooms also build community. They become
places to meet other patients, spouses, and children, learn about
their lives, and catch up on how their days are going. Having this
sense of community can make time pass more quickly, boost ones
spirits, and make the entire experience much more endurable.
Alternatively, one patient told us that he always found himself
waiting with a group of individuals who constantly tried to outdo
one another with their woes and problems. In time, he found their
negativity to be infectious. Finding himself sinking deeper into de-
pression, he decided to switch to a clinic where he could walk
straight into the unit and build his nest at his chair without any wait.
The point of this story is that there are healthy, positive communi-
ties and there are unhealthy, negative communities. If you ever no-
tice yourself being sucked into playing the who is most miserable
game, perhaps put a bit of distance between yourself and the other
contenders. This is one competition that you would be better off not
trying to win.
Inside the Unit

As you enter the unit, you may see as few as ve chairs or as many as
fty-ve. Some clinics may have rows of chairs facing each other.
Others may have chairs lining the walls of the room. A chair typi-
cally resembles a big Lazy-Boy recliner.
While different centers may have different set-ups, well describe
what we frequently see at Daniels clinic. Intravenous (IV) stands are
alongside each of the chairs, as are dialysis machines with monitors
on top. The technicians and nurses who are working and walking
about are usually dressed like nurses in a hospital. At rst glance, pa-
tients are sleeping, reading, eating, watching TV, and talking on
their cell phones. Before he sits down, Daniels chair will be wiped
down with bleach and disinfectant. These cleaning agents create a
particular smell, which in time you will notice is common to most
centers. Cleanliness in the clinic is important to guard against infec-
tion. As patients arrive inside the unit, they are also advised to thor-
oughly wash their hands.
Weigh In: Determining How Much Water

to Take Off
Typically, when you enter the unit, your rst order of business will be
to weigh in and have your blood pressure checked. This weight is
called your wet weight or how much you weigh with all the addi-
tional uid youve stockpiled. Like most dialysis patients, you do not
urinate to any signicant degree. Excess uid is rst stored in your
bloodstream. When your bloodstream lls to capacity, then the uid
backs up into the cells and tissues in your body and your blood pres-
sure rises above normal. One of the goals of your dialysis session will
be to get you down to your dry weight at which your blood pressure
is normal; it is the weight you should have without all this additional
uid. To achieve your dry weight, the dialyzer will pull off excess liq-
uid from your bloodstream. As this liquid departs, additional liquid
that has seeped into your tissues will now have room to move into
your bloodstream. After it enters the bloodstream, it too is then
pulled off by the dialyzer.
If you have been amassing uid over a long time, you might not
be able to get down to your dry weight in just one session. It may
take several sessions to remove all this additional uid. But lets say
after several initial sessions you arrive at this weight, and for the sake
of explanation lets call this your very rst dry weight. This would
be the very rst time you have been at your proper, normal weight
since your kidneys failed. Because the role that your weight plays in
dialysis is both a very important and very complex topic that is rarely
explained well, lets look at it in some depth here and describe this
role in steps.
Step One: Once your very rst dry weight is reached, ideally you
would maintain this weight forever, never gaining or losing any fat
or muscle weight. This is completely unrealistic, but lets say for now
that its possible. Well call this fat or muscle weight real kilograms.
In medicine, weight is typically measured in kilograms, not pounds,
but to give you a frame of reference one kilogram is about 2.2 pounds.
Now lets imagine a fantasy world, where the only uctuations in
your weight would be from the kilograms you gain from retaining
liquid. Well call these kinds of kilograms liquid kilograms.
Step Two: Now lets imagine that you live in this fantasy world
where you never gain or lose real weight and your very rst dry
weight, after dialyzing on Monday, is 70 kilograms (abbreviated
kgs.). On Wednesday, when you arrive for your next session you step
on the scale so the technician can determine your wet weight. You
weigh 72.5 kgs. This is your wet weight. The difference between your
dry and wet weight is 2.5 kgs. We know, because we live in the world
of fantasy, that all 2.5 of these kilograms are liquid. So, the dialysis
machine will be set to remove 2.5 kgs. of liquid over the course of
your dialysis session. When the 2.5 kgs. have been removed, your
technician will know that you are back to your correct dry weight.
Step Three: But here is the catch: you live in the real world where
you do gain and lose real kilograms. Now lets imagine that be-
tween dialysis sessions you suffer from a lack of appetite and inadver-
tently lose one real kilogram between Monday and Wednesday.
Now your dry weight is really 69 kgs., but you recall Mondays scale
that read 70 kgs. On Wednesday, you step on the scale and it reads
72.5 kgs. In reality youve gained 3.5 liquid kilograms. But it appears
that youve gained only 2.5 liquid kilograms. After the dialyzer re-
moves the 2.5 kilograms of liquid, how will you and your medical
team know that you are actually carrying around one additional kilo-
gram in liquid weight and that your dry weight is now 69 kgs., not
70 kgs.? Youll know because your blood pressure after dialysis will be
higher than usual and you may be short of breath. Not enough uid
has been removed. If your blood pressure is still substantially above
your normal rate at the end of a session, then you are very likely still
retaining too much uid. The physician may decide to lengthen the
session or have more liquid removed at the next session.
Step Four: Now lets envision an alternative real-world scenario.
On Tuesday, while celebrating your birthday, you eat too much
food, including cake. In this example, without your knowledge or
any way to measure it, you gain one real kilogram between Monday
and Wednesday. Now your dry weight is really 71 kgs., but you recall
the scale read 70 kgs. On Wednesday, when you arrive at the dialysis
clinic, you step on the scale and it reads 72.5 kgs. In reality youve
gained 1.5 liquid kilograms and one real kilogram, but it appears
youve gained 2.5 liquid kilograms. In this case, the dialysis machine
will be set to take off too much liquid. What will happen? You may
feel light-headed or nauseous and your blood pressure is likely to
drop during and after dialysis.
These two examples highlight the fact that determining your
correct dry weight is not an exact science. Weighing in does provide
the best estimate of how much liquid to remove, but it is just that
an estimate. You and your medical team will use a number of indica-
tors both during and after the session to help determine how much
liquid needs to be removed.
How the Machine Works: Determining How

Quickly to Remove the Liquid
The technician has an idea of how much uid to remove. Now how
does he or she know how fast to remove it? In each of the examples
above the technician will set the machine to remove 2.5 kilograms
over the course of the session. But how long will the session be? If 2.5
kilograms is removed over three hours, the rate of removal will be
faster than if it is removed over four hours. In actuality the length of
the session will be prescribed by your physician, but the rate of uid
removal may vary based on your physical reaction to dialysis. The
rate that uid moves from the bloodstream into the dialyzer is called
the ultraltration rate (UFR). At the same time, uid moves from
your tissues into the bloodstream. The removal process itself involves
two steps.
Step One: Your blood has several components, two of which are
red blood cells and plasma that together make up your total blood
volume. The plasma contains the excess uid and toxins that the di-
alyzer, serving as a sieve, sifts out. Because the red blood cells are
too big to t through the holes of the sieve, they are left in the
bloodstream.
Step Two: As the dialyzer removes these toxins and uid from the
plasma, your overall blood volume drops. At the same time, your
blood volume rises as more uid moves from your tissues and cells
into your bloodstream. You will have an optimal session if your
blood volume does not go too low or too high.
Now that weve introduced you to the scale and to how the ma-
chine works, it is time to go on.
Going On: Getting Hooked Up to the Dialyzer

After your wet weight is logged, the technician will take your blood
pressure. At this point, your blood pressure should be higher than
normal because you have additional uid in your body. Blood pres-
sure and body uid are usually directly related. This is one reason
that people with high blood pressure are told to cut down on salt.
Salt causes us to retain uid, and uid retention increases blood
pressure. Next, the technician cleans your access with alcohol and io-
dine. At this point, if you have a catheter, the technician connects
the catheter, without the use of any needles, directly to the tubes
into which your blood will ow. Or, if you have a permanent access,
the technician then inserts a very large needle into one side of the
permanent accessand by large, we mean quite large. As one pa-
tient said to us, I wish someone had told me that they used sixteen
gauge, and I mean big, needles. That was a shocker. I would have
liked to have known that. I dont know if it would have made me any
more comfortable, but it might not have been such a shock.
This needle is attached to plastic tubing that is about twelve inches
long. The tube is marked red, which indicates it is the arterial line or
the line that removes the dirty blood. A second large needle is used
to insert another twelve-inch tube into the other side of the access.
This tube is marked blue, which indicates it is the venous line or the
line that returns the clean blood to the body. Your technician may
ask which side of your access is red and which is blue. Your doctor will
have shown you this in advance. Attached to each of these twelve-inch
tubes are two very long, thin clear tubes that connect to the dialysis l-
ter. The lter is a thick, hollow-looking tube that resembles the shaft
of a ashlight. It sits alongside the machine in plain view. The dialysis
lter is where all the action takes placethat is, where your excess
uid and impurities will be removed from your blood.
Now comes the stick. The needles can be placed at several differ-
ent points running about three inches along the length of the access.
You should remind the technician to rotate the cannulation site

(the site where the needle is inserted to draw off uids) each time
to ensure that you are not stuck in the same place each time. This
will allow the site time to recover after a session before it is eventually
reused.
There are topical anesthetics, such as Lidocaine or Emla, that can
be used to numb the access. Whether these creams are prescription
or over-the-counter varies by state. Applied at least a half hour before
treatment, these ointments prevent you from feeling any pain from
the needles. In addition, you might want to employ breathing or vi-
sualization techniques to relax. Sometimes you may get stuck multi-
ple times before the technician is able to successfully connect (not
fun). Other times they may connect on the rst try (whew!). Once
inserted, the needles are taped down. One patient told us that be-
cause he had a lot of arm hair, his arm always hurt when the tape was
pulled off at the end of a session. He recommended to those in a
similar predicament that they carefully shave the hair around the ac-
cess site so that the untaping will be less painful.
Being On: What Happens While You Dialyze

Once your access is attached to the dialyzer, the process of cleaning
your blood begins immediately. The plastic tubing as it nears the ma-
chine jumps constantly. This jump results from the pump on the ma-
chine that is continuously circulating your blood. During the dialysis
process you will likely hear many beeps coming from the monitors on
the machines throughout the room. Your machine will be constantly
monitoring several pieces of vital information, including but not lim-
ited to your pulse, blood pressure, the amount of water that has
been removed, the rate of removal of water, the blood ow rate, and
the treatment time. Throughout the session your blood volume may
uctuate.
What happens if your blood volume drops too low? You can
crash or feel sick. Remember that body liquid and blood pressure
are directly related. A drop in blood volume beyond a certain thresh-

old (a tolerance level that is unique to every individual) can lead to a
signicant drop in blood pressure, followed by cramping, dizziness,
lightheadedness, or nausea. If you suffer from any of these symp-
toms, a technician may lower your UFR or temporarily or perma-
nently stop removing liquid for the remainder of your session. He or
she may also inject saline solution directly into your venous line,
which will immediately increase your blood volume. This, in turn,
will improve your blood pressure. The nurse or technician may ad-
just your chair so that you are in a reclining position with your head
lowered and your feet up. Over time, through trial and error, you
and the technicians will learn just how much liquid can be removed
and at what rate before you crash.
But what if your blood volume levels are too high while you are
dialyzing? That means that the uid is being removed too slowly. In
this instance, the technician may increase the UFR so that uid will
be removed more quickly.
Every individual reacts differently to dialysis and can react differ-
ently on any given day. Taking off too much liquid too quickly can
make you feel bad. Thats why consuming too much liquid between
sessions often makes for a more miserable session. Taking off just the
right amount at just the right speed should make for an easier session.
However, pinpointing the correct amounts and rates of removal is
challenging, especially when real and liquid weight gain can uctuate
constantly. Plus, determining a patients threshold is essentially a live
and learn process, which is another reason that dialysis can be partic-
ularly rough on a patient in the rst few months of treatment.
Occasionally patients faint from excessively low blood pressure,
causing a medical emergency when the paramedics will be called. The
din of the clinic disappears. Everyone is silent. Fortunately, such emer-
gencies are rare. In the seven years that Daniel has been dialyzing, for
example, he has witnessed them only a few times. Most of the time,
though, its just business as usual, and a good dialysis session is one
that is very uneventful and quite boring. You sit, listen to beeps, and
pass the time as pleasantly as you can until your session is over. And like
Daniel, you try not to think of these emergencies happening to you.
Coming Off : Being Unhooked from

the Machine
Time passes one way or another. The machines screen shows how
many minutes of treatment remain. Once it is time to come off the
machine, all of the blood in the dialyzer is returned to your body. The
technician puts on gloves and, depending on unit policy, may hand
you a glove so that you can assist with the process of stopping the
blood ow. The technician begins to pull off the strips of tape that are
holding the needles in place, removes the long tubes from the shorter
ones, sterilizes the site with an iodine swab, and then pulls the two
needles out of the skin. Occasionally there may be an overow of
blood when the needles are removed. The technician places gauze
pads over the spots where the needles were and instructs you to press
down on the gauze for about ten minutes. The pressure will help the
blood to clot.
Sometimes it may take longer for the blood to clot. If you are not
strong enough to apply adequate pressure, a plastic cuff can be used to
stem the blood ow. You will not be able to leave until the bleeding
has stopped. While you continue to press down on your access, the
technician cleans out the machine. The long tubes are thrown away. In
many clinics the plastic dialyzer is also discarded, while in some the di-
alyzer may undergo reuse in the same patient after cleansing and
sterilization (in which case, at the next session, the technician will rst
show the patient that the lter is entirely clean and clear, without any
cleaning residue left inside, before attaching it to the machine). Even-
tually, after you apply pressure to your access, your blood clots. The
technician places tape over a fresh piece of gauze over your access, and
for the last time, records your sitting and standing blood pressure and
weight. Now it is time to leave.
After Dialysis
How You Will Feel

Different people respond in different ways to dialysis. Some feel ab-
solutely ne after they nish. They get up out of the chair and go on
with their day or evening as though they had never been to the
clinic. Other people may have a more adverse reaction. They may
feel tired or weak. They may suffer from diarrhea, cramping, vomit-
ing, or a general funk for different periods of time after a session.
Daniel experiences something in between. Typically he has plenty
of energy to drive himself home. He is always hungry and looks for-
ward to the meal that Marjorie prepares for him. But after dinner
he begins to, as he says, sink. At this point he feels very tired and
devoid of energy. He is really not t to do anything other than
watch ESPN or the SCI-FI channel and go to bed. But, when he
awakes in the morning he feels great until about nine or ten a.m.
when at some point he will experience a shorter slump. For approx-
imately half an hour he will feel very tired, very much like he felt
the night before. Then it will pass. This is his typical recovery rou-
tine after every session.
It is important, once you determine your typical reaction, to nd
a schedule that best accommodates your side effects. For instance, if
you nd that you are useless after dialysis, you may want to try to
avoid morning sessions right before you go to work or school and in-
stead schedule afternoon or early evening sessions so that you can go
home and sleep. This may not always be possible, but with some ad-
vanced planning, your clinic may be able to work with you.
Abnormal Occurrences
On a few occasions Daniel has experienced atypical aftereffects.
Once he was acting confused and disoriented (signs of uremia). An-
other time he suffered from diarrhea, felt very weak, and had trouble
sleeping. Because these after effects were abnormal for him, he con-
tacted his doctor and in each case he either returned for more dialy-
sis, altered his diet, or had a longer session the next time. Another
atypical occurrence, which he and others at his clinic have experi-
enced, is bleeding from the access site after leaving the unit. This can
be both messy and frightening. Sometimes you will have gotten no
farther than the parking lot before the bleeding resumes. If you
havent gone far you will need to turn around and head back into the
unit for additional assistance. However, if this happens at home you
will need to try to stop the bleeding on your own. If you cannot,
then you should call your doctor or visit an emergency room.
Life Marches On
Daniel has noticed over the years that the patients who put on too
much uid between sessions typically endure longer and more phys-
ically taxing dialysis sessions. They often have more difculty with
side effects after the sessions as well. He is grateful to experience rel-
atively minor aftershocks. The day after he returns home from dialy-
sis he will remove the tape that is covering the gauze on his access.
That day he, like thousands of other dialysis patients, may work, ex-
ercise, partake in a hobby, talk to his children, enjoy time with his
wife. Life marches on. The dialysis session is a thing of the past. This
is the after. Maybe not happily everbut certainly happily enough.
Before we put the suds factory entirely behind us, wed like to share
some parting thoughts and words of wisdom from an important and
central gure in every clinic: a nurse. Daniel met this particular nurse,
Madeline, at a clinic where he dialyzed while on vacation. The clinic
serves over 200 patients and is one of the largest in the United States.
Madeline rst began working with dialysis patients twenty years earlier
while stationed in the intensive care unit (ICU) of a hospital. Eventu-
ally she left the ICU to work for a nephrologists practice where she
did rounds in a dialysis clinic. In time, she moved to her current clinic
where she started out managing technicians and administering care for
patients, then began to oversee new-patient and staff education, and

ultimately became the clinics director. When Daniel and she initially
met, she was still in charge of education. Upon hearing of Daniels
book project, Madeline expressed a warm willingness to share much of
what she had learned and observed about patients, patient education,
and living well on dialysis. She graciously agreed to be interviewed by
Susan. Because the two women lived in separate cities, they decided to
conduct the interview by phone.
Madelines Story, a Dialysis Nurse and

Educators Perspective
Susan begins by asking Madeline about her role as the clinics educa-
tor and what that means. Madeline explains that she is responsible
for training all the new employees at the clinic, which requires a
varying level of instruction depending on the individual. Aside from
ensuring that state-mandated standards and continuing education
needs for professionals are met, Madeline is also in charge of patient
education, which she emphasizes, is critical for most patients when
they rst start dialysis.
Madeline explains that for most people, beginning dialysis is the
worst thing that has happened to them in their life. At rst, people
are usually in shock and disbelief and will test their boundaries.
They refuse to believe that they cant drink more than a certain
amount or that they cant eat whatever they like. Many are for the
rst time realizing and coming to terms with the idea that they wont
live forever. Madeline tells Susan that for many patients, having an
educator who can answer questions and provide guidance can ease
ones transition to life on dialysis.
Do most people receive education before they begin dialysis?
Most people do not receive any education before their kidneys fail.
Often the kidney failure isnt caught in time, or if it is, the patients still
arent really educated. Many of the symptoms of kidney disease arent

things that you would think are related to your kidneys. For example,
my brother has had high blood pressure for twenty years, but he didnt
take his medications because he didnt feel bad. Over time the unman-
aged high blood pressure has taken its toll, and now his kidneys are
failing.
In your opinion, what are the key factors or characteristics of patients
who do well on dialysis?
The patients who do well are very active in their care. They
dont do well by accident. They are following their diet. They are
attending all their treatments. They are not cutting their dialysis
time short. They are not bending the rules, or if they are, they
arent doing it frequently. They dont fight with it anymore. Im not
saying that they dont get down or wish that they didnt have to go
to that damn place, but they get up in the morning and get out
there.
What advice do you give to patients who are new to dialysis?
When I meet new dialysis patients sometimes they have never
been dialyzed or sometimes they have already been dialyzed a few
times in the hospital. The rst thing that I want them to know is
how much power they have. If they choose not to follow their doc-
tors prescription, thats their own business. But if they dont do it,
I want them to know what the consequences will be. I want them to
be making an informed decision. You have to be able to shoot
straight with the patients; let them know these are their choices and
these are the consequences.
Do you ever have patients who dont quite grasp that they must come
to dialysis religiously?
I had one patient who came to dialysis once a week for three
weeks. He was carrying around seventy-ve pounds of liquid. His
legs were so big he could not bend them. A lot of new patients tell
me, Im too sick to come to dialysis. I explain to them that is ex-
actly why they have to come to dialysis because they arent clean
enough. And the more they come the better they will begin to feel.
Usually when patients rst begin dialysis they feel really horrible and
they think they are going to feel this terrible forever. Sometimes they
feel so bad that they cant even begin to learn about their treatment.
Then as they start correcting their anemia, lowering their uremia
and getting their stamina up, theyll often say, Wow, I didnt realize
how bad I felt. Sometimes they start feeling the best that theyve felt
in two years. For many people, renal failure is slow and insidious,
which is why folks wont realize just how long theyve been sick until
they rebound.
Do you have any success stories of patients who really made adjust-
ments and followed your advice?
The most memorable woman who comes to mind was a thirty-
one-year-old African American woman who had nine children. This
lady had such low self-esteem she barely made eye contact with me.
Her phosphorus was off the charts.
Madeline explains that too much phosphorusone of the impu-
rities derived from the foods we eatcauses the bones to lose cal-
cium. The calcium can move into the heart valves. Calcication of
the heart can eventually lead to heart failure. Phosphorus molecules,
unlike other impurities, are not as effectively removed from the
bloodstream by the dialysis lter. This is why dialysis patients must
take medications called binders. Binders literally bind or stick to
phosphorous molecules, preventing them from entering the blood-
stream and enabling them to exit the body via the bowels.
Madeline continues, Initially when I told this young woman of
the potential consequences of her dietary behavior she blew me off;
she didnt think she would see me again. Here I was, this middle-
aged white woman trying to tell her what to do. But I kept coming
around to check on her. Eventually she asked me, Why you keep
coming back? I told her, You have nine kids. You are too young to
kill yourself. Slowly she began to engage with me. I would often ask,
Do you have the money for your binders? Do you carry them with
you? Little by little her phosphorus declined. On the days she

received her lab results she began looking for me. Watching her self-
esteem grow was amazing. The day that she nally got her phospho-
rus to an acceptable level, all the nurses and technicians gathered
round her to congratulate her on a job well done.
Typically what kind of training, education, or literature do dialysis
patients receive in preparation of being dialyzed for the rst time?
Well, as I mentioned before, in reality a lot of people are intro-
duced to dialysis after they are already on it. In a perfect world peo-
ple would learn that they have high blood pressure or diabetes and
they would take the steps necessary to try to prevent or postpone
dialysis. Then if they did have to go on dialysis, there would be am-
ple warning and time for them to get a permanent access. Ideally
they wouldnt be initiated to dialysis in the hospital with a resident
putting in a catheter. Rather, the nephrologist would say, Your GFR
is getting down to 35%; lets put a stula in you and if that doesnt
work then a graft. When someone has been followed for two or
three years by a doctor and he or she comes into our clinic with a
catheter I want to know why. My brother hasnt had a stula put in
yet, but Im following his GFR levels and am frequently checking
with his doctor as to when they are going to put it in.
What do you think is the most challenging for patients with a GFR of
15% or less who are new to dialysis?
Coming to terms with the cards that they have been dealt. And
sometimes they will do everything right and they will still have a set-
back and that is also very challenging. They might get sick, break a
bone, be hospitalized and it just wont seem fair. Especially because
they were doing everything right. And it isnt fair, but it wasnt fair
that they got the disease in the rst place. When they hit those
bumps in the road they get frustrated and think How many times
do I have to come in and get my access declotted? or, How come I
dont feel well enough to go to Angies graduation? Those are the
times when it is the hardest for patients not to get the blues.
When it comes to educating people about dialysis what is the biggest

challenge?
I think with chronic patients the hardest thing is getting them to
buy into taking care of themselves. For example, how do you make
phosphorous management interesting? Someone who has been on
dialysis for twenty years probably knows more about it than I do. A
lot of times, it is not a lack of knowledge that keeps patients from
following the guidelines. Rather, it is a lack of enthusiasm. Imagine
someone who decides on January 1 to go on a diet and maintain a
healthy lifestyle. Maybe he or she can do it for a week, but how will
the person be doing come March? Or even come the second week in
January? Getting folks to buy into their care and stick with it is the
biggest challenge.
What do you like most about working with dialysis patients?
People will say to me, How can you work at a dialysis clinic? Isnt
it so depressing? I dont think so. It really isnt. Overall people on
dialysis do really well with that theyve been dealt. Not one person
there would be alive without dialysiseven if dialysis just means that
they are able to play with their grandkids. This in itself can be a con-
tribution so the parents can go to work. To me, working at a dialysis
center is actually a glimpse of people at the very best they can be.
At the conversations end Madeline mentions that she is grateful
for the profession she has chosen. Having always held nurses in high
esteem, she hopes more people will choose to become nurses. And
she concludes, Although some of us nurses have our warts, for most
of us it still comes down to caring for the vulnerable. Madelines
particular choice of words is worth noting: caring for the vulnerable,
not for the incapable. Something to ruminate on, as our tour of the
suds factory is now complete.
Three
Dialysis Options
Choosing What Works Best for You
nce your doctor determines that you are indeed in need

O ofor will be in need ofdialysis or a transplant, then together
you must decide which type of treatment, or which type of modality
as it is often referred to by the medical community, will work best for
you. In this chapter we will specically focus on the variety of dialysis
modalities that exist. In the next chapter well discuss at length the al-
ternative modality: transplantation. You may already know that trans-
plantation is your chosen route, but even so, it is very likely that you
will be on dialysis for some amount of time before receiving a success-
ful transplant. Or perhaps you are too sick to make any decisions
about modalities when you rst begin dialysis. Thats OK. The good
news is that you are not wedded to any particular dialysis modality.
Even if youve already started on one kind of dialysis, you may opt to
switch to another in the future. So whether you are awaiting a trans-
plant or have already started a particular dialysis regime, wed encour-
age you to read on.
These days there are actually several different kinds of dialysis, but
each kind falls under one of two headings: peritoneal dialysis (PD) or
hemodialysis. The goals of both types of dialysis are the same: again,
to lter and remove the excess uid and toxic impurities from your
blood. Both types of dialysis can do the trick, but choosing the type is
determined by each patients unique needs as well as by each patients

responses to different types of treatments. Your particular medical
history may limit your options and dictate your choice of modality.
For example, someone who sustains scarring from a previous surgery
to the abdomen may not be a candidate for peritoneal dialysis. Like-
wise, someone who suffers from poor venous circulation may not be
a candidate for hemodialysis. And these two examples are but a drop
in the ocean. We cant begin to capture all the medical circumstances
that may dictate your choice of treatment, which is why, together
with your doctors guidance, you will determine which type of dialy-
sis modality might work best for you. Our goal in this chapter is to
provide you with insight into the types of dialysis available so that
you can begin to ask your doctor the right questions.
First, two major differences between peritoneal dialysis and he-
modialysis have to do with (1) who is in charge, and (2) where is it
done. Peritoneal dialysis is carried out by you and can be done in the
privacy of your home, workplace, or anywhere that meets sufcient
standards of cleanliness. Hemodialysis can be done either at home,
usually with the help of a partner, or, as is more common, in a cen-
ter like the one we visited in the prior chapter, where nurses and
technicians manage the procedure and where other patients dialyze
alongside you at the same time.
Regardless of the kind of dialysis you choose, it will require work
on your endwhich is why being on dialysis should in some ways
be thought of as a lifestyle choice as much as a medical procedure. It
is for this reason that we strongly recommend that you take the time
to research and identify the modality that can be best integrated into
the rest of your normal world. When it comes to your health there
are many things out of your control, but prohibitive medical issues
notwithstanding, selecting your treatment of choice is one thing that
you may very well inuence.
The majority of the patients whose perspectives are shared through-
out this book are on hemodialysis, and this majority is reective of the
Dialysis Options 57
dialysis population at large.1 We ourselves are most familiar with he-

modialysis because that is the modality that Daniel uses, and later in
this chapter we will briey examine its various types, including home
hemodialysis. Let us focus rst, however, on peritoneal dialysis and
share the story of a patient for whom that modality works best.
We were delighted to meet Elena, a soft-spoken, yet feisty woman
in her mid-fties who has been coping with kidney failure for over
three decades and who wholeheartedly sings the praises of peritoneal
dialysis. When it comes to renal failure treatments, she has really
done it all: hemodialysis for eight months, a transplant for nineteen
years, followed by peritoneal for eight years, during which she spo-
radically returned to hemodialysis. When asked to rank each treat-
ment in order of best to worst quality of life, without hesitation she
said, peritoneal, then transplant, then hemo. Surprised? We were.
Perhaps you wont be after hearing her story.
Elenas Story: A Peritoneal Dialysis (PD)

Patients Perspective
Elena and Margie meet in a suburban public library. Elena kiddingly

says that her house is a mess. Margie nds this to be curious, be-
cause she assumes that, due to the risks of infection associated with
peritoneal dialysis, one would need to be obsessively clean to achieve
success. Elena sets Margie straight by explaining that the area where
she performs her dialysis is quite clean, which is an absolute neces-
sity of PD, but that the mess is everything around the periphery
and really is a matter of clutter not dirt. By contrast, the small library
room is the picture of order. Surrounded on all sides by shelves of
books, Margie turns on her tape recorder and the two women get
down to business.
Elena starts by explaining that while at work one day in 1972 she
looked down and couldnt see her feet because her ankles were so
swollen. She was twenty-four years old at the time. Soon after she was
diagnosed with glomerulonephritis, a disease resulting from an in-
ammation of the kidney that destroys kidney tissue. Five and half
years later, when she rst began dialysis in 1978, she suffered from se-
vere uremia and anemia. Because the pharmaceutical substitute for
erythropoietin wasnt yet introduced and wouldnt be until the early
1990s, Elena was subjected to thirteen blood transfusions in eleven
months. Elena was on hemodialysis for a relatively short period, eight
months, before she received a kidney transplant from her brother.
What would you have liked to have learned when you rst started
dialysis?
When I rst developed renal failure I think I was too busy trying
to survive to worry about learning anything. The second time I went
on dialysis I would have liked to have heard about life after trans-
plant. What I learned is that there is life after transplantas it turns
out, a pretty good one.
The rst time you started on dialysis did you consider peritoneal
dialysis?
It wasnt an option then or, if it was, it wasnt discussed. When I
started dialyzing, I was just lucky that Medicare paid for it. If Id had
to go on dialysis immediately, like when I had rst noticed my
swollen ankles in 1972, it wouldnt have been covered. The act that
mandated Medicare coverage of dialysis didnt pass until 1973. Let
me use a bit of Yiddish hereeven a schlimazel [a luckless person]
can have a bit of mazel [luck]meaning I was terribly unlucky to
get sick, but very lucky to get sick when I did. If I had gotten sick
during my parents generation we wouldnt even be having this
conversation.
What advice would you give to someone who is new to hemodialysis?
Think about peritoneal dialysis as soon as possible! Im a peri-
toneal cheerleader so it is really hard for me to encourage anybody
on hemodialysis. For some people hemodialysis is wonderful. They
get the socialization with the other patients at the center, they get
Dialysis Options 59
somebody taking care of them there in the event that something

happens, but Im too independent. Ive fought too hard for my inde-
pendence to choose hemodialysis. For me hemodialysis isnt a life,
but it keeps me alive until I can weigh my choices and gure out
what I want to do.
Elena goes on to tell Margie that after receiving her transplant she
was able to nish school, return to work, enjoy an active social life,
purchase her own home, and live independently. Her brothers kid-
ney served her very well and lasted a few days shy of nineteen years.
And as Elena says, Considering when I was transplanted, it was
quite a good run. But the years of immunosuppressant drugs had
seemingly taken their toll. Designed to suppress the immune system
so that her body would not reject her brothers kidney, these drugs
also suppressed her bodys ability to ward off ailments. While there is
no evidence that the drugs were the direct cause, they did make it
harder for her to ght the kidney cancer that she was diagnosed
with. Desperate to save her kidney, Elena chose an out-of-network
surgeonthe best physician for the jobto remove the cancerous
tumors. At that point, she didnt know with certainty if her insur-
ance company would pay for that particular physicians services, but
as she tells Margie, I would have sacriced anything, sold my house
if I had needed to and moved in with my sister, to try and save what
I could. (The insurance company did pay, but Elena didnt learn
this until the day before she went into surgery. She was fully pre-
pared to go into debt to pay the costs herself.)
Unfortunately, a return to dialysis could not be thwarted. That
fateful day, the on-call physician said to Elena, Have you thought
about peritoneal dialysis? Elena said she had been told she wasnt
a candidate. Thats ridiculous, replied the physician. Elena tells
Margie that she now looks back on that meeting and feels incredibly
fortunate to have been given such advice.
Describe peritoneal dialysis to me? What are your days like? What is
your routine?
I have a catheter inserted into my stomach wall, which exits my

abdomen. Its a little plastic tube that sticks out of my belly. The
catheter enables me to hook up a drain tube to the machine, also
called the cycler. Everything goes in and out of that one tube. Unlike
hemodialysis, you dont use any needles. The routine is this: you
mask, wash, and then hook up to the machine. You introduce the
solution into the abdomen. That is called the ll. You let it sit there
for two hours. That is called the dwell and then you drain it. The en-
tire process is called an exchange. When you drain the solution, you
are removing the excess toxins and uids from your body. The lining
of your abdomen, the peritoneal cavity, lters the toxins and uids
from your blood.
Elena then explains that the two most common kinds of peritoneal
dialysis are continuous ambulatory peritoneal dialysis (CAPD) and
continuous cycling peritoneal dialysis (CCPD). With CAPD a per-
son completes four or ve exchanges throughout the day by hand,
without the use of a machine. Dialysis uid remains in the abdomen
for four to six hours, allowing thirty to forty-ve minutes to drain
and ll. CCPD, Elenas dialysis of choice, uses a machine that contin-
uously does the exchanges throughout the night. Sometimes when an
individual is on CCPD, he or she might need to do one manual ex-
change during the day as well. Elena tells Margie that she completes
four exchanges throughout the night. The machine drains, lls, then
lets the solution dwell for almost two hours each time. Then at the
end of the night, Elena receives one last ll. She then carries this uid
with her throughout the next day.
Do you sleep the whole ten hours that you are on the machine?
I am up for the rst drain, watching the news. I have a TV in my
bedroom. I usually get about seven to eight hours of sleep. I am
sometimes awakened by an alarm on the machine, and it will say low
drain volume. That means that Im not getting enough uid out. For
most people on CCPD, this is a rare occurrence. When it happens I
hit the stop button to shut it up. Then I sit up or pace because I drain
Dialysis Options 61
better when Im upright. For that reason, I always try to get up

and pace for the last drain. I have a plastic line that enables me to
walk. And if need be, the line is long enough for me to walk to the
bathroom.
Do you travel while on peritoneal dialysis?
Not recently, but yes I have. I have traveled to North Carolina
and six years ago I traveled to Israel. The ight to Israel was twelve
hours plus I had a fourteen-hour layover in London. I had to get spe-
cial permission to do this, but I asked my doctor, What do you want
me to do? He said, Dialyze before you leave for the airport and di-
alyze as soon as you arrive. It was a very long time between dialyz-
ing! I think the only reason he let me do this is because my labs were
so good. My machine is twenty-ve pounds. I put it in a suitcase
which I carried onto the plane with me.
What are the advantages of peritoneal dialysis?
First of all, like I said, Im independent. Even though I have to
do it every day, or should I say I get to do it every day, I can do it on
my time. I dont have to start at 10 p.m. If I go out and I dont get
home until 1 a.m., I just start then and dialyze until 11 a.m. the next
day. Another big advantage is you can do it while you sleep. Another
benet about peritoneal dialysis is that it is portable. Obviously
CAPD is the most portable; you can do it around town if you have
to, but as I said, with CCPD I have taken my machine with me
when I traveled. And I only need to visit the center once a month to
meet with the doctor and have blood drawn for tests.
Another huge advantage with peritoneal dialysis is that you dont
get the ups and downs associated with hemodialysis. On hemodialy-
sis you can feel these swings because you are growing uremic over a
forty-eight-hour period and then you have the toxic wastes removed
in just four hours. With peritoneal dialysis Im constantly dialyzing
so I never have those highs and lows. Im on an even keel across the
board. Now I dont cramp when I dialyze and I dont have to worry
that I will have to jump out of bed because of cramps. When I was
on hemodialysis, if I got leg cramps, I couldnt even stand up and

walk them off. With hemodialysis you are literally stuck in place.
Can you do peritoneal dialysis on an airplane?
It has been done. There are people that do it in their cars. There
are people who go camping and do it in their RVs. Would I do it?
I dont think so. Im too worried about the risk of infection.
Peritoneal dialysis patients can be at risk for infections externally
at the site of the catheter as well as internally in the abdomen. Signs
of infection include redness, swelling, soreness, and pus at the site of
the catheter, which is usually surgically placed a few inches below
ones belly button. An infection of the abdomen is called peritonitis.
Most infections can be treated with antibiotics.
Weve heard there is a high risk of infection with peritoneal dialysis;
have you ever had an infection?
I have had exactly one episode of peritonitis and Ive been doing
this for a little over eight years. When I got the infection they had to
replace my peritoneal catheter, but rst they wanted the abdomen to
rest. No point in implanting a new catheter into an infected belly. So
I went on hemodialysis for three months this summer. I would not
profess to be the worlds expert on cleanliness, and I manage. So I
think others can do it too.
How do the dietary and liquid restrictions compare to hemodialysis?
The diet restrictions are fewer. Not gone but less. The big thing
is the phosphorous. I take binders and avoid dairy products because
they are high in phosphorous. My potassium tends to be low, which
is the opposite of patients on hemodialysis. I can either take a sup-
plement or I can have a heck of a good time eating squash, tomatoes,
bananas, and brussels sprouts.
As for the fluid restrictions Elena tells Margie there are none.
Additionally she is able to control her blood pressure with the
dialysate solutions she uses. There are different strengths of these so-
lutions, meaning they have different amounts of dextrose (sugar): 1.5%,
2.5%, or 4.25%. The higher the concentration of dextrose, the more
Dialysis Options 63
uid is removed. When Elenas blood pressure is low, she uses 1.5%
solution. At times when it has been higher, she has used 2.5%. She
does take her blood pressure both in the morning and at night, and
she weighs herself twice daily in order to know how much liquid to
remove though the course of the night.
Aside from the dietary restrictions, are there any other limitations
with peritoneal dialysis?
If I was younger and athletic there would be some limitations.
You have to protect the abdomen. Also there is a great deal of de-
bate, even among medical professionals, about swimming with a
catheter. Some people believe swimming in a pool that is chlori-
nated is a sufcient protection against infection. Personally I have
not gone swimming since I began PD. I am too concerned that Ill
get an infection.
Certain precautions regarding water, bathing, and swimming
need to be taken to protect peritoneal dialysis patients from infec-
tion. Unlike patients with temporary catheters in the neck or groin,
peritoneal patients with catheters in their abdomens may shower,
swim, or bathe. However, before showering or bathing, they need to
place a protective plastic covering over the catheter. They may swim
in chlorinated pools or the ocean, but may not swim in brackish or
fresh water.
What is the biggest challenge with peritoneal dialysis?
There are days when you say, I dont want to set up. I dont want
to do this. But there are days on hemodialysis when you say the
same. You get sick and tired of being sick and tired. You get sick of
having to be reminded of it all the time. If all you do to manage a
disease is pop a pill, thats no big deal. Dialysis is different. On he-
modialysis you have to think to yourself, Its Monday; I have to be
at the unit at four today. Your time is constricted. That was what
was so wonderful about going on peritoneal dialysis. All of a sudden
I had the entire day back! My days werent chopped up and at rst
they felt so long. But I quickly learned to love it.
What are the key success factors to living well with renal failure?
I think that you have a choice. You can either roll with it, or you
can curl up in a corner and wait to die. Nowsince Im not ready
to wait to die, I roll with it. People say to me, How can you be on
a machine for ten hours? I say, You know what? There is no
choice. Its not that Im making a choice. Its what I do. Period. Or
people say, How can you be on this diet? I say, You know what? I
manage. People dont get it. You have to take what you get and you
have to live with what you get. The key to success is to be able to
live with it without having it become the focus of your life. A lot of
people do Oh poor me. Or, they say, Why me? The answer is,
Why not.
Just as all good things must come to an end, so does Margies
meeting with Elena, and the women part with hugs and smiles like
two old friends who have known each other for a long while.
Peritoneal Dialysis: Benets

and Drawbacks
Elena did an excellent job of laying out the hows and whys of peri-
toneal dialysis for a novice. To review and elaborate on her points,
peritoneal dialysis (either CAPD or CCPD) may be a great modality
for people who
Want the exibility to dialyze on their own schedule either every
day at night for ten hours or every day for thirty to forty-ve
minutes at four- to six-hour intervals.
Desire or at least be willing to assume a greater sense of own-
ership and control over their care.
Are prepared to dialyze every day or night in order to have the
added benet of less uremia and uid retention, which results in
consistently better physiological well-being day to day.
Dialysis Options 65
Have transportation limitations and perhaps cant easily get to a

dialysis center three times weekly.
Want to be independent from a hemodialysis unitincluding its
very rigid schedulingwith the exception of monthly visits for
lab tests.
Want to take care of themselves rather than passively let a techni-
cian hold the reins.
Are frightened of needles or have veins that wont accommodate
accesses.
Want to worry less about how much they drink, and to have less
stringent dietary restrictions.
Are self-conscious about a visible access in the forearm and
would prefer to have a catheter that can be concealed.
Want the ability to travel with ease (especially those on CAPD)
without having to dialyze at new and unknown dialysis centers.
Want to be able to dialyze at home without having the help of
a partner.
Want to be able to dialyze at home but are worried that they
cant learn how to do sothe training for peritoneal dialysis is
easier than the training for home hemodialysis.
Peritoneal dialysis may also be a great modality for people who are
willing and able to
Conquer their intimidation and fear about taking on the role of
home technician.
Devote space in their home for the dialysis medical supplies
and/or a cyclerimagine approximately the cubic space of a
medium-sized closet or an average-sized washer and dryer.
Overcome concerns that their family and other members of their
household will have to be around them while they are dialyzing or
that they will never feel like they can truly be away from dialysis.
Diligently maintain a standard of cleanliness (washing, masking,

etc.) that will protect the catheter against infection.
Understand that in general there is increased risk of infection to
the peritoneum (abdominal wall) or at the site of the catheter.
Drain uid before participating in sports or exercise and ll after.
Carry a dextrose solution in the abdomen throughout the day
and night, which can sometimes increase the size of the stomach
and/or result in weight gain.
If diabetic, monitor blood sugar levels even more carefully due to
the sugar content of the solution that can increase blood sugar.
Insulin may be added directly to the solution.
Possibly shift to loose-tting clothes that may be more comfort-
able given the placement of the catheter and a full belly.
Forgo some self-consciousness and explore with a partner ways
to have intercourse that are comfortable given the placement of
the catheter in the lower abdomen.
Move 2.5 and 5 liter bags of dialysis solution. This may not be
ideal for someone who is weak or frail.
Sleep while dialyzing, despite the noise that the machine may
make throughout the night (specic to CCPD).
Make the easy switch to manual exchanges in order to travel
with ease or carry the machine if capable (specic to CCPD).
We also found it interesting to hear what many physicians and
nurses had to say about the pluses and minuses of peritoneal dialysis:
Many people will shy away from peritoneal dialysis and say I
cant do that! My response is, Why cant you? You are smart
enough to learn and were going to teach you.
I try to encourage most young people to do peritoneal because
the freedom for them is enormous. Plus peritoneal dialysis gives
Dialysis Options 67
them control, or at least more control over their life and their
disease so they feel like they are in charge. For many patients the
loss of control is traumatic and when they can recover some ele-
ment of control, its great.
Previously the perception was that peritoneal dialysis was for re-
ally good patients, ones who were highly motivated; now it is
more commonly considered for all patients, including those with
more disabilities.
I dont have hard data to support it, but I believe that people
who take an active role in their care and their well-being are
more vested and do better. As a result, I have a bias toward
out-of-center modalities. The dialysis center is a very passive
experience. It is easier for the technicians in the centers to have a
passive patient than a patient who is going to come in and start
asking questions or get involved. Even if you have a patient who
wants to get involved, in many cases he or she is going to be dis-
suaded because of the nature of the system which needs to get
patients in and out quickly and efciently.
Do you have to be very clean on peritoneal dialysis? Well, you
do and you dont. Ive had blind people successfully do it, as well
as folks who are very down and out socioeconomically. The most
important thing is to have a good routine. You have to follow a
rigid procedure and protocol for cleanliness. Most people can do
it. I have found that most people who get an infection and were
a bit sloppy before getting infected will self-correct after.
In contrast, For those who have difculties with vision or impair-
ments with motor skills or neuropathy, I try to steer them toward
in-center hemodialysis unless they have a lot of support at home.
Most of my patients who do peritoneal dialysis, if they have to
switch to hemodialysis, really dont like it. Several who have lost
their peritoneal dialysis catheter for one reason or another are
miserable on hemodialysis both physically and psychologically.
If I had to go on dialysis I would choose home hemodialysis as

my modality, so I could do it whatever time of day I wanted to.
I wouldnt have to drive to a clinic if the weather was bad. Peri-
toneal dialysis might be an easier modality for traveling, but Im
not sure if Id want to go sloshing around with that much uid
in my abdomen. Plus, if you are on home hemodialysis, you
dont have to do it every day.
Clearly there are numerous challenges and benets associated with
CAPD and CCPD. We hope that this section has been illuminating
and that you now know more about peritoneal dialysis (we certainly
do) than you did before hearing Elenas story. Now lets take a brief
look at the other overarching dialysis modalityhemodialysisand
the specic types of hemodialysis and their benets and drawbacks.
Spotlight on Hemodialysis:
Continuing Your Search for the
Best Dialysis Modality for You
When we spoke with the many in-center hemodialysis patients

whose voices youll hear throughout other chapters in this book,
they often said that they had no interest in pursuing peritoneal dial-
ysis. Nor would they want to do hemodialysis on their own, which is
similar to in-center dialysis but usually requires a partners assistance
and entails having a dialyzer, needles, and the like in their home.
Many said they did not want to burden themselves or their family
members by having their medical condition, including an area de-
voted to machines and/or medical supplies, in their faces all the
time. Sometimes patients simply didnt have the space in their
homes to accommodate a dialysis setup. With regard to peritoneal
dialysis, most didnt like the idea of always dialyzing. In-center
hemodialysis allowed them to come three days weekly and then, in
Dialysis Options 69
theory, to be free from dialysis the other four days. With peritoneal
dialysis, they perceived the seven-days-a-week routine to be a con-
stant reminder that didnt grant them an out of sight out of mind
escape. Many patients said they felt quite good when they left
dialysis, and the fluid retention and buildup of impurities over a
forty-eight- to seventy-two-hour period did not adversely affect
them enough to warrant a change in modality.
In addition, most of these patients werent particularly keen, or
were downright nervous, about being in charge of a machine or
their care at home. They preferred coming to a center and having a
technician or nurse assume the burden of care and to be on hand in
case of any emergencies. Some said theyd never really thought
about peritoneal dialysis or home hemodialysis one way or the
other. In-center hemodialysis is what theyve been doing to date,
and it was working for them well enough. Why change? Most told
us that they have found a sense of community with the other pa-
tients whom they met in the chairs next to them or in the waiting
room. Some patients mentioned forming friendly relationships
with nurses and staff as well. Many described the people in the unit
as a family. Does having this sense of family make dialysis enjoy-
able? Well, that might be a stretch, but it certainly does make it more
endurable.
Taking into account what we heard from these patients, in-center
conventional hemodialysis may be an excellent modality for people
who
Want to dialyze only three times weekly and essentially leave

dialysis when they walk out the door of the center.
Want to, or are at the very least willing to, let trained profession-
als be responsible for managing the dialysis process.
Enjoy the comfort and community of being around others who
get what they are going through and are often in the same
boat.
Want the reassurance of knowing that medical assistance is easily

available in the event of an emergency.
Are physically or mentally incapable of caring for themselves on
peritoneal dialysis or do not have a partner at home who can be
with them during home hemodialysis sessions.
Hemodialysis may also be a good modality for people who are will-
ing and able to
Very carefully monitor their diet in order to minimize the ups

and downs associated with uremia.
Very carefully monitor their liquid intake in order to minimize
stress on the heart, respiratory distress, and/or side effects associ-
ated with having to take off too much water during a session,
such as cramping or u-like symptoms.
Adhere to the schedule that is determined by the dialysis center,
make it a priority, and move any conicting activities to another
time (not always ideal for certain work and school schedules).
Deal with the setbacks and losses of dialysis family members
over time. An unavoidable fact is that many people who receive
in-center treatment are dealing with complicating, life-threatening
illnesses. Forming bonds, while emotionally uplifting, can also
be sad and stressful when someone you see three times a week
becomes worse, is hospitalized, or dies.
Aside from in-center conventional hemodialysis, there are other

types such as home conventional, home short-daily, in-center noctur-
nal (nightly), and home nocturnal. Each of these is a variation on the
basic in-center hemodialysis that weve described. The major differ-
ences between them are the location, frequency, duration of time,
and time of day spent on the hemodialysis machine. In addition,
as weve mentioned, home hemodialysis options require a training
process, space in the home, an adequate utilities setup to run the
Dialysis Options 71
hemodialysis machine, and usually the commitment of a partner who

is present for every dialysis session. Having a partner may not always
be a requirement, however; it is dependent on the policies of each
clinic.
As we wrote this chapter, we realized that there are many factors for
someone wanting to choose one dialysis modality over the other.
One person might pass out at the sight of blood and needles while
another might be a physician. One person might not think twice
about drinking in moderation while another might really nd it to
be a challenge. One person might be an extremely light sleeper while
another might be bordering on narcolepsy. One person might be a
night security guard while another might be a daytime middle-
school teacher. Pick any combination of these characteristics, give
weights of importance to each, and you will likely arrive at very dif-
ferent dialysis modalities that seem to best t a persons overall
lifestyle and well-being. For example, one patients personal modal-
ity advertisement might read like this: Extremely needle phobic,
mildly light sleeper who loves job as a school teacher. Has some free
periods during the day, wants more control over her care and ability
to drink more. Desperately seeks best dialysis modality. In this case,
CAPD might be just the ticket.
But of course it is rarely this easy to arrive at a decision. What if
we throw in the fact that this person lives in a tiny apartment with-
out an inch of storage space? Well, then she may have to move to
accommodate her peritoneal dialysis supplies or else kick her liquid-
loving, needle-fearing ways and consider an in-center hemodialysis
option. The bottom line: there is a give and take with every modal-
ity. Your job is to work with your doctor to nd the one that gives
the most and takes the least. Why make the effort? Because chances
are it will profoundly impact the quality and longevity of your life.
Once youve made your best-informed guess, then take the steps to
make it happen.
For more information on the various forms of dialysis, please refer

to the Helpful Resources section at the end of the book, ask your doc-
tor, or contact a dialysis center near you for any literature or videos
(which are usually produced by medical supply companies) that cover
the different modality options.
Four
The Decision to Pursue

a Transplant
s weve heard, dialysis is not the only option in dealing with

Adefunct kidneys. In fact, for many it is not even the best option.
Transplantation, agreed to be the preferable course of treatment for
the majority of patients, is a lofty subject and an entire book could
be spent on all that is involved before, during, and after a transplant.
This is not that book. This is a book about dialysishow best to live
with, cope with, and adapt to itan important subject even for the
sizable population awaiting a transplant. But given the interconnect-
edness of dialysis with transplantation in the treatment of kidney
failure, we would be shortsighted not to devote a chapter to the
overarching discussion of transplantation and the role of this treat-
ment in the lives of dialysis patients. For one who chooses to pursue
transplantation, dialysis is still a necessary interim treatment until a
donor kidney becomes available. But who chooses transplantation
and for what reasons? Is it always an easy decision? Oftentimes yes,
but not always, and it is a choice that many dialysis patients grapple
with.
According to the Organ Procurement and Transplantation
Network (OPTN), the graft survival rates for kidney transplants
performed from 1997 to 2004 after one, three, and five years for
people between the ages of fifty and sixty-four years is approxi-
mately 91%, 81%, and 70% respectively.1 These numbers reflect
the odds that a new kidney will be alive and functioning well
within a recipient over these respective lengths of time post sur-
gery. However, these statistics are a compilation of everyone who
received a kidney transplant during those seven years, regardless of
what year their surgery was performed. As you can imagine, the
closer to the present day that one undergoes a transplant, the more
likely the procedure is to succeeddue to ongoing advancements
in transplantation medicine and care. Also, ones age and general
state of health can improve ones odds that a kidney transplant will
succeed. As an example of these improved odds, if you look at the
survival success rates during the same period for recipients ages
eighteen to thirty-four, the rates of success increase to 93%, 83%,
and 72% in years one, three, and five.2 Without a doubt, these
numbers are very positive. In addition to the sheer success rates,
physicians argue that for many, quality of life is improved and
longevity of life is extended.
In this chapter, we describe what it might be like for someone
with nonfunctioning kidney disease to opt for a transplant instead
of a lifetime on dialysis. Through the course of gathering research
for this book, we talked to nephrologists who weighed in as to who
should seek transplants, dialysis patients who were eagerly awaiting
transplants, and renal patients who had experienced successful
transplants for many years but were now back on dialysis. But it
was our interview with one gentleman who had successfully under-
gone a kidney/pancreas transplant three years prior that we felt
best illuminated many of the issues involved with dialysis and
transplantation. By sharing his insights here, we aim to provide
an objective comparison of one mans life on dialysis versus his
life with a transplant. We hope his story, in conjunction with the
practical information that follows, will aid you in your decision-
making process and, should you choose transplantation, realisti-
cally prepare you for some of the potential benefits and pitfalls
involved.
The Decision to Pursue a Transplant 75
Larrys Story, a Transplantation

Its a rainy, cool Sunday morning when Margie rings the doorbell of
Larrys home. A middle-aged, medium-built, Caucasian gentleman
with light brown hair opens the door and amicably welcomes her in.
The two exchange small talk as Larry leads the way to a tiny room
surrounded by windowsthe room is just large enough for a table
and two chairs. He inquires if this will be a good spot for the inter-
view and awaits Margies response before taking a seat. Before she
can answer, he jokingly interjects that he is quite the talker and
warns that Margie might have to rein him in. Usually Margie prefers
to conduct in-home interviews in the kitchen, as she has found it to
be a comfortable room that typically puts interviewees at ease. But
both this nook and Larry exude warmth, and Margie knows that
her kitchen strategy will not be necessary. She assures him it is an ex-
cellent spot, encourages him to talk freely, and begins to ask him
about his life both before and after his successful kidney/pancreas
transplant.
Larry explains that while he was diagnosed with diabetes and was
insulin dependent at age twenty, he did not begin dialysis until three
decades later. His renal failure came on very abruptly, surprising
even his nephrologist by its rapid onset. Ultimately, a partner
who was subbing for Larrys vacationing physician broke the news
that Larry needed to start dialysis immediately. Larry tells Margie,
Frankly, when the word dialysis was mentioned, it was really very
upsetting. I hadnt been adequately prepared for it at that point, be-
cause my doctor thought I had another year to go. When Larrys
doctor returned from vacation, he reviewed the tests along with
other behavioral indicators and actually gave Larry the option of
putting dialysis off a bit longer. Larry emphatically recalls, I told
my doctor, you have got to be kidding me! Ive been sitting here
upset for two days and scared to death of this. Im not leaving this
hospital until Im on dialysis. Lets just get it under way and start
dealing with it.
What was your experience like when you rst began dialysis?
Oh God, it was awful. As my diabetes had grown increasingly
complex, Id become very matter-of-fact about my health problems.
But dialysis all of a sudden shook me to my roots. It was frightening
at rst. I probably cried every night for a couple of weeks. Initially it
was exhausting. Id come out of there and just be wasted. Plus I
maintained my full-time job. So it was both physically taxing and
emotionally turbulent.
Then one day about three weeks into it, after theyd removed
most of the toxins that had built up in my system, I woke up and felt
pretty good. Something changed, a switch clicked and I thought this
isnt so bad. I mean it was never a fun experience but emotionally
I changed, and I thought OK, I can do this. Im going to get a trans-
plant and until then I can handle this. It was at that point I started
taking very active, aggressive steps to get the transplant that I have
now.
What do you wish someone had told you before you rst went on
dialysis?
I wish Id known about other ways that you could receive dialy-
sis and had been more aggressive about pushing for myself. With he-
modialysis I had an extremely difcult time sitting there and being
idle for so long. I thought about bringing my laptop computer with
me and doing work at the clinic but found that Id be nodding off.
My doctor told me that outside of the United States hed seen clinics
where they had stationary bikes for people to ride while they were
dialyzed. I would have loved to have been able to get on a bicycle
three times a week for some exercise.
How did you decide to have a transplant?
In terms of how I decided, I dont think there was ever any ques-
tion. It was just that I was going to do it. Even now I look back and
realize that some of the things other people investigatedsome of
the implications and complexities of transplantationI never even

worried about. I just knew I wasnt going to contend with dialysis
and diabetes for the rest of my life. I knew that being diabetic and on
dialysis would be particularly difcult and I knew enough about di-
abetes to know that I faced a continued deterioration of my body.
That just wasnt going to be an option.
Larry explains that both his nephrologist and endocrinologist
were strong advocates for a transplant. He began checking which
hospitals would be covered under his insurance plan and which of
those hospitals his doctors recommended. After being on dialysis for
two months, he attended a transplantation orientation designed to
give patients, many of whom had traveled from all areas of the coun-
try, basic information so they could decide whether a transplant was
of interest. Larry tells Margie, I kept thinking I dont want infor-
mation! All I want to know is where do I sign up?! At the end of
the meeting he approached the hospitals Director of Transplanta-
tion and Pancreas/Kidney Transplant Coordinator, intending to ask
just a few questions. An hour and a half later the three were still talk-
ing when Larry said, OK, what is the next step? The Transplant
Coordinator responded, You just took it. Apparently Larry had
wholeheartedly demonstrated his commitment to transplantation.
He was then told that the screening process just to be put on the
list would take six months. When Larry pressed about why it would
take so long, he was told that the actual tests did not take that much
time, but that the scheduling conictsworking around peoples
jobs, family commitments, and even travel requirements for those
who lived out-of-townlengthened the process. Larry countered,
Ive got vacation time in the bank. Ill give you as much of it as you
want. I can stay in a hotel right by the hospital and you can just put
me through all the paces. Lets just do it. And they did. They sent
him through all the physical and psychological evaluations fairly
quickly. Five months after Larry began dialysis, he was ofcially put
on the list.
How long until you received your transplant?

I was fortunate to be at the right place at the right time. They
told me to expect about a three- to four-year wait. I was in it for the
long haul. I was ready to just hunker down and stay healthy and
wait. One day my transplant coordinator called and said, Things
have been moving more quickly than expected and you are getting
close to the top of the list in your blood group. My rst call was
about three months after I was listed. It was a false alarm, meaning
that the kidney turned out not to be usable for one reason or an-
other. I had two false alarms before I got my transplant on March
20. It was ten months after I had started dialysis.
Larry describes those ten months as a time when he lived his life
from day to day as well as he could. Forced to cut down on certain ac-
tivities due to his lowered energy levels, he quit coaching his kids
sports teams. He couldnt maintain that level of activity as well as dia-
lyze and work full time. But he tells Margie, I had learned from being
a diabetic all those years that you do what you need to do to get from
one day to the next. I always thought dialysis was part of a larger pro-
cess and it was getting me to the next step. I never saw dialysis as an
end stage. I kept thinking, Put one foot in front of the other every day.
Go to dialysis and then come home. Yeah, its not fun but it is leading
you to something else in three years and then you will be done.
While waiting, Larry was also preparing to switch to a form of
home hemodialysis. With it, he was looking forward to having a
more normal diet, drinking more, reducing his lethargy, and cutting
down on his cramping and blood pressure uxes. Larry was in the
midst of undergoing training at a nearby hospital and was awaiting
the arrival of his own home machine when he got called for his
transplant.
Did you do anything physically or mentally to prepare for your
transplant?
Physically, I just tried to be active because I wanted to be as
healthy as possible going into it. Mentally, I dont recall having any
worries. I didnt pay attention to some of the risks involved. There

was never any question or hesitation in my mind if this was the right
thing to do. I was fully prepared, motivated and ready to do it.
What emotions did you experience when the call came?
When the call came and it was the real thing my wife became
very emotional. I, on the other hand, was in a take-charge mode.
My wife was getting upset and I told her to stop. I felt like I was
going into battle. I was driving to the transplant center dictating
to my wife things that needed be done: my boss needed to be
called, co-workers needed to be given files, family members needed
to be contacted. That was my way of dealing with it. I became
stone coldnot fearful, just very matter of fact. If there were any
emotions there I wasnt aware of them. I was just hoping for the
best.
I now know that there were many things to be afraid ofthings
that I dont think I was prepared for, and Im just as happy that I
wasnt. I encountered some very challenging and somewhat awful
things. But even knowing what I know now I would never have
made a different decision.
According to Larry, he was a poster child for the transplant;
going into it and the actual seven-hour surgery went as well as it
could. Both organsthe kidney and the pancreasstarted func-
tioning before they stitched him back up. Larry recalls waking up
and hearing from a resident that hed done great. Larry smiles and
tells Margie, I told the resident the rst thing I wanted to do on my
way home from the hospital was stop by my sons favorite ice cream
parlor for a hot-fudge sundae and the second was to pick up a six-
pack of Guinness stout. I also remember asking him if Id be able to
play the piano when I went home. He said, Sure, youll be able to do
anything you want. And I said, Great because Ive never been able
to play the piano before!
Unfortunately, that was the last joke Larry would make for some
time. Moments later, his throat began to ll with blood and his
lungs began to lose oxygen. Then Larrys heart stopped. Or as he

tells Margie, I died on the table. They had to use the paddles on me
three times to restart my heart. Larry later learned that when the
doctors had withdrawn his breathing tube, an edge of the tube had
caught on some soft tissue, cutting and lling his throat and then his
lungs with blood. Looking back on the scare, he shrugs and says, It
was a uke. Just one of those things. It happens. Larry then spent
three days in intensive care during which he remembers telling his
wife that he was having second thoughts as to whether the transplant
was the right thing to do. Larry tells Margie, My wife was crushed.
All I knew was I felt miserable. It was a horrible process and a pretty
startling experience.
After two weeks in the hospital, a week longer than the norm,
Larry returned home in April and went back to work part-time in
July. While other transplant recipients have been known to return to
work as early as three weeks post surgery, Larry tells Margie that he
was particularly weak from not eating due to the complications with
his throat. I wanted to ease back into work slowly and Im so glad
that I did. It was exhausting at that point.
Did you urinate right away? Were there any other immediate, notice-
able physical differences?
I did start urinating while I was still in the hospital. If you dont,
there is the looming threat that at some point theyll have to put a
tube in you. That was enough of a threat that I kept thinking Ill
work on it!
Larry explains that with his new pancreas he no longer has to take
insulin or test his blood sugar. I thought it would be a very difcult
transition having been an obsessive insulin-dependent diabetic, test-
ing myself seven to eight times daily, keeping meticulous reports on
my blood sugar. Little did I know! I never looked back. One day I
woke up and realized I hadnt tested my blood sugar for two months
and hadnt even thought about it! It was amazing.
At what point did you relax knowing that the organs were working?
Oh it took awhile. I assumed that based on the number of times

you had to go in and be tested if something wasnt working they
would let you know quickly. My doctors couldnt have been more
delighted with the outcome. Everything was working the way they
wanted it to, and I trusted the doctors implicitly.
I think there is always some question about whether the organs
are working the way they are supposed to. I know from the way that
I feel that they are working, but I do know there are things that go
wrong. Its amazing how much maintenance and activity is involved
once youve received the transplant. Sometimes symptoms arise
and I wonder, Is this a rejection? One morning about a year ago I
was feeling miserable. I took my blood pressure. It was soaring. My
blood sugar was too. I thought, Im going into acute rejection. It
was really very frightening.
As it turns out Larry had contracted a rare kidney virus, which the
doctors were able to get under control and continue to monitor over
time. He tells Margie that he has noticed from visiting online chat
forums that many transplant recipients refuse to worry about rejec-
tion. They claim that worry would defeat the purpose of getting the
transplant in the rst place, which was to lead a normal life. How-
ever, Larry remains very aware of the kidney infection.
Are there other collective thoughts that you hear transplant recipients
emphasize?
I think there is an unrealistic expectation that people have
going into a transplant that can lead to a sense of disappointment
and discouragement that life isnt perfect afterward. Folks who get
kidney/pancreas transplants often complain that things arent per-
fect. It is true. Even though your organs work, things arent perfect.
There are various viruses that you can contract. Regularly, you have
to get your blood tested and occasionally you may have unex-
plained increases in your creatinine levels, which can be unnerving.
I still occasionally am anemic and will need to get a shot to boost
my red blood cells. Without doing much of anything, I somehow
ended up with a stress fracture in my leg. Just like dialysis patients,

transplantation patients are often still dealing with the increased
brittleness of their bones. Now, one of the immunosuppressant
medications that I take to protect my new organs prevents my bones
from healing quickly, so the fracture took about seven months to
heal.
What is your medication regime?
At this point Larry goes into the next room and returns with what
looks like a bucket one would use for cleaning suppliesa small
donut with the handle in the middlebut instead of polishes and
sanitizers it is lled with medicine bottles of all sizes. These are my
morning meds, he says pointing to one side of the bucket. These
are my afternoon meds. Luckily my health insurance covers this. Im
getting about $18,000 of medications for about $30 a month. I have
medications that keep my body from rejecting the organs, medica-
tions for migraines, medications for the kidney virus, medications
for blood pressure, and medications for my bones. The number of
medications has slowly grown as time has gone on. It is an interest-
ing struggle to remember what to take.
Larry continues to regale Margie by pointing out a medication
that he takes only on Mondays and Fridays, then a medication that
he takes different doses of every other day, yet another he takes on
Mondays, Wednesdays, and Fridays. I have to be obsessive about
keeping track of them. They are organized in a progression of what
to take when. If anyone touches them I would know.
What do you consider the biggest drawbacks of the transplants?
The drawback is my life has gotten more complicated in ways
that Id never expected. I complained recently to my doctor about
how much goes into monitoring and managing these organs, the
number of lab tests that I have to do, the medications that I have to
take for the virus, the stress fracture. To this my doctor replied,
Everything in medicine has costs and benets. I think Ive experi-
enced them all. Now that I have a transplant, life is not golden. I still
have things going on in my body that need special attention. Im a

very expensive, high-maintenance individual.
What do you consider the biggest benets of the transplants? What has
changed?
Everything. Everything has changed. First of all and most impor-
tant, it has normalized my life. I no longer am dealing with two life-
threatening conditions that were going to get progressively worse.
The transplants have eliminated them for now. I certainly have a life
in front of me, which is somewhat difcult to get used to. I just ex-
pected that I was going to die young. My father died young from
complications from diabetes so I always thought I would too. Ive
got to adjust and actually plan for a future, now that Ive got a life
and, God willing, these organs will last for some time.
Now that youve done both dialysis and transplantation, what is your
view of dialysis?
Awful. I had sessions when Id cramp horribly or Id come home
and have dinner and have stomach cramps. Or Id have sessions
when my blood pressure would drop and theyd have to treat me in
an urgent way. Dialysis is life prolonging and maintaining, but I
found it to be an awful experience to endure.
What advice would you give to someone who is waiting for a
transplant?
My rst recommendation is get comfortable with the Internet.
Get as much information as you can so you are going into it as well
educated as you can be. Second, search out a support group. There
are even online groups that are useful for sharing information and
raising issues that you may have. Information is critical for people
who need to take some control of their life.
The other recommendation is maintain a sense of humor about
all of this! It is deathly serious but my sense of humor has gotten me
through an awful lot. To this day my doctor thought I was kidding
about wanting to take my kidney home with me. As it turns out they
dont take the old ones out; they just nd spots for the new ones.
I had a vision of taking slices of my kidney and pressing them into

slides and giving my friends coffee cups with a slide of the kidney
that said Larry went to the hospital and all he got me was this damn
piece of kidney. People thought that was really sick. I thought it was
wonderful sick! There has got to be a place to laugh.
Despite the weightiness of the subject matter Larry has been
funny, energetic, and charming throughout the interview, which,
without Margie even noticing, evolved from its intended one hour
to two. Throughout their conversation it has been obvious to Margie
that even with its massive hardships and trials, Larry loves life. She
thanks him for his candor and willingness to share his story. Before
leaving Margie asks to stop in the restroom and then admits to Larry
that ever since Daniel went on dialysis, hearing herself or anyone
go has taken on a whole new meaning. Now hearing that sound is
like music to her ears. It is the sound of a healthy kidney. Larry un-
derstands this admission and laughs in agreement.
Transplantation: The Alternative

to Dialysis
Who Is a Good Fit for Transplantation?

Many times, when we are young and trying to make a decision, we
are advised to take a piece of paper, fold it in half, and on one side
write down all the positives of the decision and on the other, all the
negatives. As we heard from Larry, he has lived the listson both
sides of the pagebut knowing what he knows now he wouldnt have
done anything differently. Upon hearing his story, we immediately
recognized that he was an extremely energetic, animated individual
who, in the prime of his life, clearly would have struggled enormously
with the idleness involved with dialysis. He was so averse to inactivity
that he even wanted to get on a bike and work out while his blood
was being cleaned. Larrys nephrologist and transplantation surgeon
deemed him an ideal candidate for transplantation. But what does

that mean exactly? Who is an ideal candidate? Who is simply a good
candidate? Who will be a long shot for making the list?
First, wed recommend that you should at least have the conversa-
tion with your doctor about whether transplantation would make
sense for you given your age and physical condition. As the best
resource for making this determination, your doctor will steer you
toward the treatment that will likely give you the best potential out-
come in terms of quality of life and longevity. If advised by your
nephrologist to pursue transplantation, you will be referred to a
transplant center to be evaluated and screened. The transplant med-
ical team will ultimately decide based on physical, social, and psy-
chological factors whether you are an acceptable candidate.
In meeting and interviewing several nephrologists, we learned
that all were strong proponents of transplantation but acknowledged
that they recommend it on an individualized basis. All agreed that
for those who fall into the category of good to ideal candidate, it is
the best way for patients to recover the closest resemblance to a nor-
mal life and to increase their life expectancy as well.
So who is considered a good to ideal candidate? Responses varied
from doctor to doctor. One physician told us that he tries to refer
all of his patients who can sustain the operation, which is a fairly
straightforward surgical procedure to the abdomen. According to
him, transplantation itself is not a big surgery; it is the manipulation
of the immune system following the transplant and the heavy med-
ical regime that can be more difcult than the procedure itself. An-
other physician said that most patients with nonfunctioning kidneys
should at one point in their lives have a transplant, although he ac-
knowledged that it gets trickier for older patients who are contending
with additional life-threatening diseases. What is not crystal clear is
where the line falls between young and old.
Of the doctors we spoke with, all said that patients under the age
of fty-ve are considered young and more ideal candidates for
transplantation than patients who are older. For those who are fty-
ve and older, by each additional year, the determinants of candidacy
become a bit grayer and more subjective depending on the physical
and emotional health of the individual. That is when you have to be-
gin to weigh the costs versus the benets more carefully. According to
OPTN in 2005, of the 16,477 people who received kidney trans-
plants, 8,132 were under the age of fty, 6,166 were between the ages
of fty and sixty-four, and 2,179 were over sixty-ve.3 But far and
away the majority of people living with kidney failure are over the age
of forty-ve. According to the 2005 U.S. Renal Data System Annual
Report, there are approximately ve people over the age of forty-
ve living on dialysis for every one person under the age of forty-ve
living on dialysis.4 When you put these facts together, you can see
that with an increase in age comes a decrease in the numbers of
transplants. But these numbers also emphasize that there is no hard
and fast rule regarding age and that a signicant number of older
individuals in their fties and sixties have successfully undergone
transplants.
Another physician explained that his approach to treatment of
patients with renal failure is like piecing together a jigsaw puzzle
where each piece is a type of life extender. As he sees it, most renal
patients are likely to have a nite time that they can live on dialysis:
perhaps twenty to thirty-ve years, depending on the individual.
And there is likely a nite time that most transplanted kidneys will
probably last: approximately ten to thirty years, again depending on
the individual. So piecing together these life extenders for a young
person with nonfunctioning kidney disease might entail a specic
sequence of three pieces: ve years on dialysis, thirty with a trans-
plant, and then another twenty back on dialysis. This is just an
example, but in this physicians mind, this comprehensive approach
toward treating nonfunctioning kidney disease pieces together a life
that otherwise would not be lived. Elena whom we met in the prior
chapter is a living example of such an approach.
Consistent with this holistic approach to life extension and

longevity, this same doctor admitted that he discourages patients in
their sixties or seventies who are living well on dialysis from pursuing
a transplant. He speculated that his approach may not coincide with
that of the majority of his peers. But in his opinion, for those who
are doing well on dialysis there is not a clear upside to transplanta-
tion in terms of longevity while there is a downside in terms of in-
creased risks of complications. In his estimation, patients who are
tolerating dialysis well and are maintaining a good quality of life
know what they have on dialysis. However, they dont know what
they will have with a transplant. As an example, Daniel went on dial-
ysis at the age of sixty-nine after undergoing an elective triple bypass
surgery prompted by chest pain. Over the latter half of his life,
Daniels track record was fair in terms of recovering complication-
free from surgeries. Even his bypass had led to additional complica-
tions, including a small stroke and his kidney failure. After adjusting
to life on dialysis, he considered transplantation but opted to stick
with what he knew was working. At age sixty-nine, he was willing to
trade the discomforts of dialysis for the added comfort of knowing,
for the most part, what he was dealing with and what was working
fairly well for him.
Who else might not be considered to be among the best candi-
dates? Patients with severe heart disease, lung disease, obesity, or a
host of other complicating, life-threatening diseases may be more
likely to be dissuaded from or rejected for transplantation. But re-
member, each person is assessed as an individual by a nephrologist.
Regardless of your age or physical disposition, if you really feel that
transplantation is right for you, talk to your doctor.
Are there individuals who are good candidates but who choose not
to pursue transplantation? Yes, there are some individuals who for one
reason or another make this choice. Elena beneted tremendously
during her lifetime from a transplant. She has been told that she is im-
munologically favored for another successful transplant because she
did so well with the rst one. Yet despite this positive prognosis, she
has decided not to pursue a transplant. Why? Having suffered from
cataracts, diabetes, and high blood pressureall likely side effects of
the immunosuppressantsand given her current success with peri-
toneal dialyis, she is hesitant to put her body through that again. Or as
she says, she is tired of rocking boats.
Transplantation for Dialysis Patients:

A Cost-Benefit Analysis
As we heard from Elena and Larry, there are always costs and bene-
ts to every option in medicine. The goal is to choose the better op-
tion. Looking at Larrys scenario, the benets of dialysis were these:
it extended his life, signicantly improved his emotional and physi-
cal health by removing the toxins in his body, and enabled him to
get a transplant. Alternatively, the costs were that he couldnt stand
the idleness of visiting a center three times weekly; he had to endure
cramping, drops in blood pressure, and overall exhaustion; and he
was limited to very stringent dietary/liquid restrictions.
On the ip side, the benets of transplantation were that he was
able to regain a sense of normalcy; he no longer had to follow what
he described as a cardboard diet; he no longer had to go to dialysis
(which he despised) three days weekly and deal with the idleness and
the physical side effects like exhaustion and cramping; he no longer
was dealing with diabetes, which would have increasingly debilitated
his body; and for the rst time in his life he could imagine living a
long life rather than dying young. Obviously these were no small
benets.
The costs of the transplantation were that he now has to maintain
a rigorous and expensive medicinal regime and endure ongoing tests
to monitor the health of the transplanted organs. He faced a serious
life-threatening complication from the surgical procedure and en-
countered alternative medical problems such as the kidney infection
and the slow-healing stress fracture.
We see from Larry that while one solution was clearly better for
him than the other, neither was perfect. And as one physician who
was a proponent of transplantation told us, Getting a transplant is
not like going back to having your own kidney and life the way it
used to be. If people have expectations that arent realized, it can be a
very difcult transition for them. Or as Elena said, People need to
understand that a transplant is a treatment. It is not a cure and it is
not a panacea either. There is not a cure for kidney failure. There are
only treatments.
Larrys medicinal regime is representative of what is required post
transplantation for the life of the organ. Human immune systems
are designed to protect our bodies against foreign invaders such as
bacteria, viruses, or foreign objects. This would include a healthy
donated kidney. The immune systems natural response is to produce
antibodies that would try to attack the kidney. Therefore, to protect
a transplanted organ, one must take immunosuppressants, drugs
that literally suppress the immune system from reacting as it natu-
rally would. Immunosuppressents must be taken in perpetuity for
the life of the organ. Even missing one dose of a drug can be detri-
mental to the health of the transplanted kidney.
For many, simply taking the pills all the time is what gets to be
the biggest challenge, especially when they are feeling well. One doc-
tor told us his patients will at times question why they still need
them if they are feeling great. His answer, Taking your medications
is like following a religion when you do something solely because
God says so. You have to have that kind of fervor and attention to it
day in and day out.
Here is the good news: over time the medical and pharmaceutical
industries have improved the drug therapies used to sustain donated
organs. In the 1970s, patients would get huge doses of drugs and
often fall very ill from infections, sometimes requiring additional
surgeries. Now the eld of transplantation has become better at man-
aging and getting people and their grafts (kidneys) through the rst
year, also known as the acute rejection stage.5 As Elena and Larry
both point out, there are serious side effects associated with taking
these medicationsincluding but not limited to bone fractures, dia-
betes, infections, and cancers; these are very real possibilities that
will affect some people more than others. However, there are also
more choices of medicines available now, so there are more options
for treating the side effects in a reasonable way. We recommend that
you discuss all the potential side effects with your physician.
Other costs that need to be taken into consideration and planned
for are monetary costs of screening and preparing for transplanta-
tion, costs of the surgery, as well as ongoing costs of the medications
after the transplant. Larry was fortunate to have excellent health in-
surance through his job that covered both the costs of his transplant
and his current prescription drugs. Many folks will nd that they
need to create a nancial plan that will often draw from multiple re-
sources to cover all the costs associated with transplantation.
There are many resources and organizations available to help you
with nancial planning and aid, several of which weve listed in the
resource section at the end of the book, and your transplant center
should have staff to assist you with planning as well. Sometimes
obtaining money from savings, by fund-raising, or from charitable
organizations will be necessary to ensure that you can purchase the
medicines required to keep a donated kidney healthy.
For individuals concerned about the nancial burden, one doctor
advised, Dont over-agonize about it. For patients who want and
need their life back, where transplantation is the best option, theyll
likely be able to work afterward and will do better in many ways. Fi-
nances should not become such an overwhelming issue that they pre-
vent someone from being evaluated for a transplant.
The same physician told us of a patient who had undergone a suc-
cessful transplant but who after three years was no longer covered for
the costs of his transplantation drugs under the Medicare prescription
drug benets. The patient had two young kids and a good job, but
without the prior Medicare coverage he couldnt sustain thousands of
dollars in pharmaceutical bills. He was ashamed that he couldnt pay
for the medications, so he stopped taking them and didnt tell any-
one. He didnt want to admit that he was struggling. Without the
medications, a person may remain symptom free for days, weeks, or
even months, but a silent, certain rejection of the kidney begins tak-
ing place immediately. A few months later his wife found out and
said, No way! You have to call the doctor this minute! The doctor
scrambled around, pulled some samples of medications together, and
worked to secure nancial aid for the gentleman in need. The moral
of this story: do not let your pride get in your way, plan ahead, and
ask for help if you need it. Sometimes it takes time and paperwork,
but there are resources available to assist with transplantation costs.
Transplantation: It Takes Two to Tango

Weve talked about determining who is best suited for a transplant
and some of the inherent costs and benets of the procedure, but
what about the kidneys themselves? Where do they come from and
what are the costs and benets to the donors?
The nice thing about kidneys is that most of us are born with two
but we only need one to live a normal life. This means that trans-
planted kidneys can come from both living and deceased donors. In
2005, according to OPTN, of the 16,477 transplants that were per-
formed, 9,914 kidneys came from a deceased donor while 6,563 came
from a living donor.6 In September 2006, there were 67,655 individ-
uals cited by the OPTN as waiting list candidates for a kidney trans-
plant.7 Unfortunately these combined numbers denitively illustrate
that there is a shortage of organs. The good news is that in 1990 only
22% of all donations came from living donors, but in 2005, approx-
imately 40% came from living donors.8 This means that the donor
pool is on the rise.
Traditionally, living kidney donors would have to recover from a

four- to eight-inch incision made in their lower back to remove one
of their kidneys. A recently developed alternative procedure, laparo-
scopic surgery, enables doctors in some cases to retrieve the donated
kidney through a few smaller incisions. This can lead to a faster and
less painful recovery for the donor. Nonrelated living donors are also
on the risemeaning that increasing rates of organs are coming
from individuals not related to the patients. Some hospitals are now
even successfully performing concurrent kidney swaps in which, as
an example, two families have an individual who needs a kidney,
each has an individual willing to donate, neither donor is a match
for his or her own family member in need, but is a match for the
other donors family member. With the introduction of creative new
techniques and procedures such as these and others, we will likely see
the pool of potential living donors continue to increase.
This book is written for dialysis patients and their families. If
you fall into the second category, you may be thinking about be-
coming a living donor. You would be well served to think through
the decision carefully. Be sure that you are doing it willingly and
without pressure from your loved one or other family members.
You dont want to nd yourself resentful or feeling bullied into un-
dergoing surgery. As with any straightforward surgery, there are
health risks involved. The most common risks are infection and
bleeding. There are also costs involved in the procedure. Depending
on your family members insurance, your costs may be covered by
the recipients insurance. However, there may be incidentals such as
airfare, hotel stays, food, and loss of wages that may not be covered.
You and your family member should research what will or will not
be covered.
If ultimately you decide you wish to be a donor, you will be re-
quired to undergo a number of tests to determine whether your kid-
ney is a match. Additionally there will be a psychological assessment to
ensure that you are making a healthy, well-thought-through decision
and that you are emotionally prepared for the possibility that, despite
your best efforts, the recipient of your kidney may experience an acute
or longer term rejection of your organ.
There are signicant benets to receiving a kidney from a living
donor versus a deceased donor. The recipient can schedule the pro-
cedure and begin taking immunosuppressant medications in ad-
vance, which helps reduce the risk of rejection. Typically, the success
rate is higher and anti-rejection rates are lower among blood relatives
whose tissues match. And the primary benet to you as a donor is a
sense of pride and contentment in knowing that you gave your loved
one, or even a stranger, the greatest gift possible: independence from
dialysis, a heightened sense of normalcy, and an improved quality
of life.
There is a great deal of information available about transplanta-
tion, and because we are able to provide only a sliver of this content
here, we recommend that you visit the books resource section to
nd out where you can learn more. Our goal in this chapter was to
describe broadly what transplantation involves and where it ts in
the life of a dialysis patient. By sharing Larrys struggles and celebra-
tions, we aimed to give you insight into many of the issues you
should be discussing with your doctors. And by providing you with
basic, useful information, we hoped to empower you to move for-
ward with added strength and condence in the health care deci-
sions you make now and in the future. We also hope that, like Larry,
you are able to embrace life and your decisions regarding how best to
prolong and live it to the fullest. And remember, dont forget to
laugh.
Five
The K-Team
Working with Dialysis
Professionals
nce dialysis is introduced into your life, so are numerous

O individuals whom you had probably never wished to meet!
They are the men and women who, with your active participation,
will take a comprehensive, team approach to providing medical care
for you while you are on dialysis.
While your access may be considered your lifeline, the doctors,
nurses, dieticians, social workers, and technicians with whom you
will interact could be coined your A-team, or perhaps more appro-
priately, your K (as in kidney) team. Each K-team member will play
a vital role in your ongoing care. In this chapter, we will discuss how
best to navigate, understand, thank, question, inuence, co-exist,
and in general, work with these individuals to achieve the best pos-
sible outcome. We dene the best possible outcome as a very self-
serving one: it is not to be the most popular, most loved, or most
passive patient, but rather it is to be the patient who receives the
best possible care at any given time. Understanding the strengths,
weaknesses, roles, and perspectives of each member on your K-team
will give you a leg up on achieving this goal. In this chapter we will
provide helpful tips and insights that we and others have gleaned
The K-Team 95
along the way when working with these critical members of our
team.
First, though, lets hear an alternative perspective on dialysis from a
pivotal member of the team, a nephrologist. Throughout our research
we met with several nephrologists whose insights are shared intermit-
tently in this book, but in the case of Jack we found his interview with
Susan spoke best to the unique dynamic of the relationship between a
doctor and a chronically ill patient. After weeks of phone and e-mail
tag, Susan was able to secure an hour on Jacks calendar. Like most
nephrologists, his time was in short supply. Despite this, he was more
than willing to meet with her once his schedule permitted.
Jacks Story, a Nephrologists

Perspective
The day of the interview, Susan arrives at a bustling dialysis clinic at

ten a.m. The receptionist ushers her through the doors of the waiting
room and introduces her to a very tall man who like the stereotypical
doctor stands beside a patient, reading and jotting notes on pages of
paper attached to a clipboard. Jack shakes Susans hand warmly and
directs her to a small ofce off to the side of the clinic. He explains
that he just needs to nish up with the patient and will be with her
momentarily. True to his word, he does not make her wait long. En-
tering the ofce with a burst of energy, Jack takes a seat across from
Susan and immediately begins answering her questions.
Jack tells Susan that he has been practicing nephrology for over f-
teen years. When he rst started in the eld, he was more focused on
research and teaching, but in time his focus shifted to actual patient
care and treatment. He is now a member of a sizable nephrology prac-
tice that services two dialysis clinics and approximately 250 dialysis pa-
tients. Jack explains that one doctor from the practice is at each clinic
every day. This schedule enables each patient to see a doctor every
week to ten days and each doctor to see about eighty patients a week.
Obviously the physicians caseloads are heavy and their time is in de-
mand. But Jack tells Susan that he and his colleagues maintain consis-
tency with their shifts, so that the patients at the clinics will typically
see the same physicians in the practice. That way, he says, we get to
know the patients, their family members, who they are, their religious
beliefs, what matters to them. With time, we begin to know the pa-
tients well and can provide a better level of continuity of care.
Jack explains that this continuity is especially benecial if a patient
is hospitalized. When a patient has a setback and arrives in the hospi-
tal after a medical eventor as Jack calls it, an episode of carehe
or she is usually more debilitated and vulnerable than usual. And Jack
concludes, During these times it is very valuable to have a physician
who is very familiar with that patient and his or her history. That way,
the patient doesnt have to re-tell his or her whole story. Much of
modern health care isnt built for that type of continuity, but it is es-
pecially important when someone has a chronic disease.
As a physician how do you dene someone who is living well on dialysis?
Doctors look at the lab tests and blood pressure and this and that.
Of course, that is part of it. We need to know that the treatment is
working as intended. But thats not the whole deal. We need to ask,
what really matters to the patients? Are they doing the things in life
that they like to do? Are they feeling relatively well at home? Are they
having a reasonable level of activity? Are they enjoying their family?
Those are clearly questions for the patients. Sometimes, I look at the
lab tests and blood work and say, You are doing great! and then I
look down at the patient and clearly he or she is not. How that per-
son is really doing is what you begin to understand as you talk to the
patient and to the family. And, as you get to know them, they begin
to trust you. They will conde in you. They may even conde in you
if they are reecting on whether or not to continue dialysis. But to
answer your questionto me it means the person is actually feeling
like Im OK. This is good. I can live like this. Dialysis is worth it.
The K-Team 97
What percentage of dialysis patients that you see do you think are do-
ing wellby your denitionon dialysis?
It is tough to put your perspective on someone elses existence. I
always tell my patients, this road you go alone. I call it the cliff. They
look. They stare over the side and they decide if they want to do this.
It is life changing for everyone. Probably 80% of the patients are sat-
ised that they are doing better and reasonably well on dialysis. I
think a good 20% struggle. Some of the struggle is because other dis-
eases they are coping with are collapsing in on them.
Jack explains to Susan that for many patients, especially those
with diabetes, kidney disease is just one complication of many.
Many times complications associated with diabetesamputations,
nerve damage, loss of vision, and vascular insufcienciesall tend
to hit at the same time. Jack tells Susan that often patients who are
contending with many of these complications at once are on dialy-
sis but are not satised with their quality of life. In these cases Jacks
says, The patients simply exist with the hope that things will get
better.
What is the most challenging for patients who are new to dialysis and
their families?
The rst few weeks or months can be difcult until they settle
into a routine. Sometimes they get sick and get sent back into the
hospital, then they need to have their accesses built, then they have a
problem with their accesses and need to get them rebuilt; meanwhile
theyve got a catheter that isnt working well and they need a new one
and everybody is thinking What the heck is going on!? But what
they need to understand and what is difcult for them to understand
is that the beginning is rarely representative of what life on dialysis
will be like. Trying to understand and see through all this turmoil
can be very hard. Patients and families manage and get through it,
but these rough starts add to their fears and worries. At the same
time they are seeing all the other patients around them and they are
thinking Oh my God what is this? Is this really my life?
What are common questions that patients and family members will
ask you when they rst begin dialysis?
Sometimes they dont ask a lot of questions. You have to go after
them to ask you questions. They will ask if dialysis is going to hurt.
They wont always understand that dialysis doesnt make the kidneys
better and that it doesnt cure them. They will ask how long until
they dont have to do dialysis anymore. Most often patients will have
that deer-in-the-headlights look.
Is it challenging for you to inuence patients to manage their diet
and liquids?
Yes, it is a huge challenge. We are so used to doing what we
want. This is our culture. There is food all around us. All our friends
are eating. When you are on dialysis, you cant walk around with a
Big Gulp like you used to, but some patients do! We are in this
constant battle with some patients. They come in, we remove uids,
they feel sick and they think that dialysis is killing them. What I
have to make them understand is that if they were more careful, they
would feel better. My approach when this happens is to say, Do this
for two weeks and you will see a difference. Just two weeks. Some
people gure it out and some never do.
Have you had patients who have ultimately chosen to stop dialysis?
Yes. Not many. It is a difcult and enormous decision for some-
one to make. It has to be a very thoughtful decision. For example,
most patients cant think clearly or thoughtfully right after theyve
had coronary bypass surgery. They may be thinking, Am I going to
live and if I do live, what is it going to be like? However, at that
point, my goal is simply to listen to them. I want to know what they
are thinking about life and death. But, objectively I know that they
may very well improve and return to a reasonable state of health.
Jack then asks Susan to imagine an alternative scenario where a
woman has been on dialysis and ghting a disease for a long time.
This woman has been going in and out of the hospital for years.
Every time she leaves the hospital her life returns to reasonable.
The K-Team 99
Every time she goes into the hospital she comes out again. Then one
day she has a medical event when life for her no longer returns to
reasonable. This patient begins thinking to herself that dialysis is
no longer worth it and she no longer wants to live. But her family
members are thinking that even though she has been in the hospital
ten times she always rebounds, so why would this time be any differ-
ent? They assume that of course she wants to live. Jack says to Susan,
It is different now because it is ten years later and she is in her
seventies.
Jack goes on to explain that many times the patient may know
what he or she wants, but making the decision to withdraw from
dialysis is very complex. Patients dont only think about their fatigue
and pain, but they also consider their familys pain and wonder how
a decision to continue or discontinue dialysis will impact their fami-
lies. Frequently they are torn between not wanting to be a burden to
the family and not wanting to let the family down. According to
Jack the most difcult situations are when there is a lack of unanim-
ity. Sometimes in these cases the family has never discussed the pa-
tients wishes, or if they have, the discussion has been forgotten or
they arent coping well with the patients desire to discontinue. Jack
reects, Those are the most uncomfortable situations, because you
can see your patients struggle. They are suffering because they are
unhappy with how they are living; they dont want to continue, but
they feel trapped.
Jack then points out a very visible example of someone who chose
to discontinue dialysisthe American author James A. Michener
who died in 1997. Michener had been on dialysis for years before he
made the conscious decision to discontinue. At that time he was
ninety, his wife had died of a stroke two years earlier, he was reading,
he was writing, his mind was in decent shape, but his body was fail-
ing him. In Jacks estimation, Michener, while it may not have been
his intent, successfully raised awareness around the consciousness of
choice.
Is it more likely for folks to want to discontinue dialysis when they are
contending with other medical issues, in addition to dialysis?
Sure, because the burden upon them is greater. It is a very differ-
ent long-term view for someone who is young and can get a trans-
plant than for someone who is elderly and has bad heart disease or
diabetes and is not a candidate for a transplant. As time marches on
it doesnt get easier.
Have you ever contemplated what it would be like to live on dialysis?
Yes I have, and at this point in life I would do it. At a later point
in life I might not. I once came upon a patient who was desperately
ill with an infected gallbladder. He was in his seventies but you could
tell he was very active. His legs, arms, and face were tanned. Clearly
he was out in the world doing stuff. In response to the possibility of
needing dialysis he said, No, Im not going to do it. Later I saw him
at the clinic. He was on dialysis. He told me, Now I actually feel
pretty good and Im doing things that I enjoy. Im going to stick with
dialysis. He had a change of mind, a change of heart, and a change
of circumstances. His health improved and he realized that he actu-
ally was still alive. My point is you just dont know what you will do
until you are in those shoes. Like I said, you go to the cliff alone. You
walk there. You stand there. You feel the cool breeze. You see the
depth of your decision. You turn around and there is nobody there.
Youve got to make the decision yourself.
Whos Who on the K-Team
Jacks story shows that nephrologists are somewhat unique in the

eld of modern-day medicine. Typically they have longer and more
intimate relationships with many of their patients than other types
of physicians. As another nephrologist said, We get to know our pa-
tients better than most other doctors do because we see them so fre-
quently. Jack also raises the very complex issue of a patients consent
The K-Team 101
and desire for treatment versus the alternative, which would be to

abstain from dialysis, enter hospice, and end ones life. One doctor
we spoke to said, I know there are nephrologists who would never
discuss this subject with their patients. A dialysis patient might want
to know his or her physicians philosophy on end-of-life issues. Not
many other specialistsaside from oncologists, doctors specializing
in cancerare as frequently in the position of bearing witness or
even assuring patients of their decisions to pursue or abstain from
additional treatment. Jacks story shines a light on the importance of
nding a doctor who will not only provide excellent medical atten-
tion and judgment throughout your illness, but who also will get to
know you and your family very well and will respect your values and
beliefs on this very complex subject.
Clearly, trust and understanding are the cornerstones of an excel-
lent patient-doctor relationship. Given the depth and duration of
the nephrologist and renal patient relationship, we encourage you
to seek out a doctor whom you feel you can trust and who will hold
your wishes and opinions in high esteem. Essentially the best possi-
ble doctor is one who knows much more than you do and can share
his or her knowledge with you. Ideally you will nd someone who
is willing, at the very least, to listen to your opinion even if the
physician respectfully disagrees. And should you ever wish to seek a
second opinion, we hope you will nd the kind of doctor who
encourages you to do so. For those doctors, even if they believe res-
olutely in their recommendations, will consider your personal com-
mitment to your course of care to be an important part of your
health care treatment.
In addition to seeking a physician who has these very important
intrinsic qualities, you will obviously need to nd a nephrologist
who can capably oversee the medical nitty-gritty involved in your
ongoing care. In fact, some patients care only about their physicians
expertise and have little concern for his or her bedside manner. As
one old-timer with eighteen years of dialysis under her belt said,
I think it is important to nd a doctor who knows what hes doing.

Just being nice isnt going to cut it with me. Anyone can be friendly.
You dont even need to talk to me, you just need to know what you
are doing. Ideally youll be able to nd a doctor who is both caring
and capable, but like this patient you may need to prioritize the
characteristics that are important to you. Now, lets quickly review
the important tasks nephrologists perform as well as the roles that
each of the key members on your K-Team plays.
The Nephrologist
Your nephrologist will meet with you and your family to answer
questions about your kidney function, dialysis, and treatment. He or
she will decide how many times weekly and for what length of time
you must dialyze based on your laboratory results and physical
exams. Your doctor will also prescribe the needed medications to ac-
company your dialysis treatment. Your nephrologist will provide ad-
vice and guidance regarding transplantation and the various dialysis
modalities. The nephrologist will recognize problems arising from
acute illness or secondary conditions, treat them if possible, or refer
the patient to primary care physicians or known consultants. Your
doctor will work closely with your transplant surgeon and transplant
team to prepare you for possible transplantation. And if ever the
time comes, your doctor will be a resource, along with mental health
professionals and clergy, to answer questions you may have about the
decision to terminate dialysis.
The Nurse
Medicare mandates that a licensed health professional be on duty at
all times while patients are dialyzing at a clinic. Therefore a doctor, a
nurse, or a nurse practitioner must always be present. Most often a
nurse will be the one to meet this requirement. Nurses wear several
hats. They may conduct new patient, family, and staff training. They
may actually put patients on the machines, monitor them, and take
The K-Team 103
them off, or they may supervise the on-duty technicians while the
technicians perform these tasks. Nurses may do rounds, meaning
they visit with the dialyzing patients, and then report back to the
doctor any questions or issues that arise. They may also conduct pa-
tient training of alternate modalities such as home hemodialysis or
peritoneal dialysis.
The Social Worker

Medicare also mandates that the staff of every dialysis center include
a social worker with a masters degree. Social workers are trained and
qualied to assist patients and family members with the psychological
issues that often surface once a patient has begun dialysis. Social
workers can help address concerns about health, work, death, mar-
riage, family, emotional or sexual intimacy, nances, and travel. They
can provide opportunities for support as well as guide patients to re-
sources that can help with nances, employment, medication costs,
home health care services, medical equipment, or transportation. So-
cial workers dont always have the answer to a question, but they are
excellent at knowing who will. Social workers also assist patients who
are planning to travel and will need dialysis while they are away from
home. Once a patients itinerary and destination is nal, the social
worker can contact dialysis centers in the area to make dialysis
arrangements.
The Dietician
The dietician is a helpful resource when it comes to managing your
new diet. On an ongoing basis dieticians will help you to read and
understand your laboratory results so that you can continue to make
changes and improvements. If you are not doing so well, they will
offer suggestions and tips as to how to make better choices and re-
place foods that negatively impact your health. They can provide
cookbooks and will often post recipes or weekly tips for all members
of the clinic to enjoy. If needed, dieticians can also meet with family
members to help educate them about your new diet and the ways in
which they can be supportive. Last, when you are on track and doing
well, your dietician will cheer you on. This persons job is to provide
positive reinforcement and encouragement so that you will continue
to keep up the good work.
The Technician
The technician is often the member of the team with whom you will
interact the most. You probably wont just have one technician who
always works with you. In reality, depending on the day, the techni-
cian who is taking care of you may change. However, typically when
you arrive for dialysis one technician will work with you for your en-
tire dialysis session. The technician will get you hooked up to the
machine, will monitor your vital signs during the session, and will
take you off the machine. He or she may be able to answer some
basic questions about the treatment or the machine, but these indi-
viduals havent received licensed medical training, so certain specic
medical questions may have to be deferred to the doctor or the
nurse.
The PatientThats Right, YOU!

You are an inuential member of the team and have the right to par-
ticipate in decisions affecting your care. Yes, that is right. You hold
power and you can assert this power in a few different ways. First,
your ability to communicate effectively with your health care team
will impact their ability to treat you effectively. The more concise
you are in describing symptoms or issues, the easier it will be for
them to determine how best to help you. Second, you have the power
to ask questions, to disagree, to explain why you disagree, and to get
a second or even a third opinion.
You may hear the words advocate or advocacy frequently associated
with dialysis patients. Sometimes advocacy refers to a patients in-
volvement in inuencing public policy and legislation. Other times it
The K-Team 105
refers to a patients ability to inuence his or her care on a much more

personal scale. In both cases the word advocacy is used because dialy-
sis patientsor sometimes their family membersare, as we said,
very inuential members on the team. Jack even described the mag-
nitude of a patients decision making as walking to the cliff alone.
The number one premise of working with your K-team is this: you
have the power to speak up for yourself and to be an advocate for
your health. Once you embrace this philosophy you will be ten steps
ahead of the game. The best quality of care you can receive will result
from successful interactions among the nephrologist, the other mem-
bers of the health care team, and you.
Other Members of the K-Team

Other members of your K-team may include the vascular surgeon
who builds your access, the driver who takes you to and from dialy-
sis, a physical or occupational therapist, the pharmacist, a transplant
surgeon and the transplant team.
Unique Challenges for Renal Care

Medical Professionals
Now that weve identied the roles of the team members, lets try to
take a step back and look at the world through their eyes a bit. As we
learned from Jack, nephrologists, unlike other types of doctors, often
care for their patients for an indenite and extended period of time.
And with the longevity of care comes a level of intimacy and knowl-
edge that many other types of doctors do not encounter. For some
nephrologists this is a very attractive aspect of their profession; they
truly enjoy this ongoing relationship with a patient and the patients
family members. For others, this can at times be a source of frustra-
tion as they never really cure their dialysis patients. They may have
some patients who successfully receive transplants and leave dialysis,
but they will still always be renal patients. For this reason, some
nephrologists may miss the satisfaction of moving on to challenging,
new cases. Essentially, nephrologists encounter some of the monot-

ony that the dialysis patients themselves face.
This potential for feeling burned out is not unique to nephrol-
ogists. All the members of your K-team are susceptible to this sense
of day-in and day-out monotony. We bring this up not to lay blame
or deride those who work with dialysis patients. Our reason is just
the oppositeso that we can recognize and sympathize with some
of the particular challenges they face. As we said before, this is very
much a team effort. As anyone who has worked on a team knows,
the more we understand our teammates and where they are coming
from, the better we are at inuencing them and working with them
toward a common goal. In this case your common goal is to keep
you healthy and living well.
Getting the Most from Your K-Team

Chances are you will not see your nephrologist as frequently as youd
like. As we saw with Jack, usually the caseloads of these doctors are
large, their responsibilities are numerous, and their time is in relatively
short supply. The fact is, you may not see all of the members of your
teamaside from the techniciansas often as you would like. Social
workers sometimes do rounds weekly, doctors vary from weekly to
monthly, dieticians typically round monthly. Nurses will often round
and dispense the medications during your session, so you will see them
more frequently. Depending on the team members time constraints
and beside manner, he or she may simply ask you how are you doing
and then move on quickly to the next patient.
The bottom line is this: if you want to increase the quality and
quantity of time spent with particular members of the team, you
may need to make it happen. They may not be visible to you as
much as youd like, but you are on a two-way street and it is always
within your rights as their patient or client to seek them out. Below
is a step-by-step proactive approach that can be applied when work-
ing with any of the members on your team:
The K-Team 107
1. Start by scheduling a time and a place that is more conducive to

having a conversation of substance. Respect their schedules.
Rather than trying to speak to them on the y in the hall, set a
time in advance when you can sit down together and meet.
2. Give some thought to the amount of privacy youd like to have
during the conversation. If you want to be able to speak openly
and in private then plan to meet when you are not dialyzing.
3. Write down a list of questions and bring it with you to your
meeting. By coming to the meeting prepared you will be able to
use everyones time efciently and effectively.
4. Try to be as specic as possible when describing physical or emo-
tional problems, sensations, or reactions. Even keep a journal of
when you are noticing particular symptoms. Jot down the date,
time, and intensity or a brief description and bring the log in
with you.
5. Bring a friend or family member with you who can keep track of
the answers to your questions. Especially in the beginning, all of
the information that you receive regarding your condition and
care can be quite overwhelming and comprehensive. Because
you will be trying to take so much in all at once, often it is dif-
cult to retain and remember everything. Having another person,
who can help you review the information even after youve re-
turned home, can be extremely useful.
6. Ask for the team member to speak your language. By this we
mean if your doctor, as an example, is using too many medical
terms or is speaking in a way that you are having difculty un-
derstanding, let him or her know. Dont be afraid to speak up
and ask for clarications or to just plain out say, I dont
understand.
7. This brings us to our next point: ask questions. Ever hear the
phrase, No question is too dumb? Well, now that you are
learning about the wide world of dialysis, remember this phrase
and live by it. If you have questions, ask. And if you have more
questions, keep on asking. Be persistent. This is your life and
your health. No question is too dumb!
8. Last, if you disagree with what you are hearing from any of the
members of your team, feel free to respectfully voice your opin-
ion and explain why you disagree. Also feel free to seek a second
or third opinion when it comes to making substantial decisions
that will impact your health and quality of life.
Being Your Own Best Advocate during Dialysis

Weve mentioned already that you have a role on the team. Now it is
time to explain just when and how you may need to step in to make
sure you are getting the best possible care. As we said, the technicians
are the folks you will interact with the most. Many of these techni-
cians are extremely hardworking, good people who form caring
bonds with their patients. Daniel has met and been cared for by
many such people. On the other hand, technicians are not the best-
paid workers, and at times this can result in lackluster hiring. Weve
heard from some technicians themselves that they have encountered
sloppy colleagues who arent always the most thorough or careful. To
complicate matters, during dialysis the patient assumes the role of
passenger while the technician sits at the wheel of the car. Or as one
physician said, The problem with some dialysis staff is they can
very easily fall into the role of using dialysis and their power to push
and command the patients. The patients are generally in a powerless
situation unless they raise the roof.
So what do you do when you think an error is being made, but
you dont want to offend the person who is going to be sticking a
very large needle in your arm? Now perhaps you see the difculty of
the patients situation. Once again we have some suggestions for how
best to work with the technicians and nurses who will be adminis-
tering your dialysis:
The K-Team 109
1. If you think that something is not being done correctly speak

up and be persistent. Remember it is your life. As one patient
said, I remember a supervisor started to give me something
and I told her, Im not on that medicine anymore. She looked
at my chart and said, It says it right here. and proceeded to
continue to give it to me. Finally I had to say to her, I dont
care what it says; you have to check. Admittedly the patient
said this didnt go over well with the staff member, but he
achieved his goalhe got the best possible care at that moment
in time. Not only that, he said hed do it again and hed tell
other patients they must do the same as well. Many of the pa-
tients we spoke with emphasized the importance of knowing
what medications and dosages you should be receiving and
keeping a watchful eye on the staff as they are administering
them.
2. If you do have to be confrontational, try to do it as diplomati-
cally and with as much charm as possible. Dont make it per-
sonal. Talk more about the issue at hand than about the person
who is committing the error.
3. After a confrontational incident with a technician or nurse, kill
them with kindness. For example, even if he or she was doing
something incorrectly, as in the case of the supervisor above,
thank the person for taking the time to check. Or, if he or she
wasnt in the wrong, thank them even more profusely for taking
the time to check. Dont apologize for your hypervigilance. It is
your life. It is your right. But do thank them as graciously and
sincerely as you can.
4. When you nd that a technician or a nurse really brightens your
day and is doing a great job, tell the person! Tell his or her super-
visor. Give them compliments. Let them know. Everyone likes to
be appreciated, and positive reinforcement is the best way to get
folks to continue to do a good job.
5. Find out whether your clinic has a patient advocacy committee

designed to raise issues collectively. The benet of such a com-
mittee is that no one single patient is perceived as problematic.
Donna, whom we heard from in Chapter 1, dialyzed at a clinic
that was fairly progressive in implementing such a committee.
Another dialysis patient who chaired the committee at that par-
ticular clinic told us, We have a meeting once a month. We sit
down and talk about any problems with the staff, machines, or
patients. It is a good opportunity for communication. Or even
just to clear the air. Changes have been made as a result. Some of
the staff members and nurses have gotten better about wearing
their gloves and washing their hands. And particular staff mem-
bers have improved their attitudes in dealing with patients.
6. If all else fails, escalate your grievance to the head of the clinic or
even beyond. Your clinic should have a policy regarding the for-
mal complaint process. Often this includes ling a complaint
with the state health department and/or the regional End Stage
Renal Disease (ESRD) network. When registering a complaint,
give clear and concise examples of the problem that you are rais-
ing. Rather than simply complaining about what is wrong with
the situation, give concrete suggestions about how the situation
could be improved.
Putting These Advocacy Lessons into Practice

Throughout the course of interviewing patients for this book we
often heard them say that they have learned to speak up for them-
selves and accept a level of responsibility for their care. One patient
told us that she was nding herself short of breath during dialysis
sessions and she would nish her dialysis sessions with high blood
pressure. Eventually she respectfully and calmly told the nurse that
she needed to dialyze longer, and she wasnt planning on leaving the
chair until her blood pressure was no longer elevated. She didnt lay
The K-Team 111
blame or get upset. Instead she identied a problem and took it

upon herself to make sure she received what she needed. As a result,
the staff consulted with her nephrologist, and over several sessions
removed nine additional pounds of liquid. Afterward, she felt
worlds better.
What would have happened if this patient had not advocated
for herself ? She would have continued to feel bad, would have
walked around with additional stress on her heart, and would have
been at an increased risk for heart failure. Given the two options
possibly offending the staff versus possibly leaving her life at risk
it seems like a no-brainer to speak up. However, like this woman,
many of us are shy. We dont like to rock the boat. Being assertive
is not always a characteristic that comes naturally to us. If you are
one such person you may have to consciously think about asserting
yourself.
On the other hand, if you are very assertive to begin with, you
may have to consciously think about how to be assertive without
being aggressive. As one doctor said, Sometimes people on dialysis
become more impatient and more demanding. Especially since their
life depends on the services of technicians, nurses, and doctors. The
goal is to get what you need without antagonizing those who will
continue to care for you in the future. Try to strike a balance be-
tween assertiveness and rudeness.
Important Resources
Part of knowing when and how to speak up on your behalf is know-
ing what resources and information are available to you. Two excel-
lent resources for learning more about patient advocacy and working
with medical professionals are these:
The National Kidney Foundation (NKF)

National Ofce:
30 East 33rd Street
New York, NY 10016

1-800-622-9010
To view an online copy of the patient bill of rights and a listing of

local ofces throughout the United States visit
www.kidney.org
American Association of Kidney Patients

3505 E. Frontage Road, Suite 315
Tampa, FL 33607
1-800-749-2257
www.aakp.org
[email protected]
Both of these organizations can provide useful literature and have

members on staff who are well-versed in patient advocacy.
Last but Not Least, Thanking Your K-Team

Of course saying thank you is something that you should make a reg-
ular habit of. However, we recommend you nd an opportunity once
or twice a year to show a little extra gratitude for your K-team. As we
said at the beginning of the chapter, they are hardworking
individuals. If youve ever held a job in a service industry, you know
that aside from receiving a raise, nothing quite compares to receiving
praise from your customer. Providing the members of your K-team
with tokens of your appreciation will serve two purposes. First, it will
make them feel good about their work and what they do. Second,
hopefully they will feel additional motivation to keep you around!
How best can you show your gratitude? You can write them a sincere
note of appreciation, make a gift, or even bake cookies. Your K-team
will not be expecting anything from you. Arriving at dialysis with a
gesture of appreciation will truly be a welcome surprise.
Over time, these men and women will come to know a great
deal about you. They will see you at your best and at your worst,
The K-Team 113
emotionally and physically. You and they will have good days and
bad days. As you learn to trust and rely on your K-team for care,
dont hesitate to trust your own instincts too, and speak up if you
must. You may be the patient, but you arent powerless. You have a
say. You have a voice. You are an equal member of the team.
Six
Dealing with Emotions

The Psychological Impact
of Dialysis
rue or false: people who are on dialysis are unhappier than

T people who are not on dialysis? If you answered true youll
probably be surprised to hear that a carefully designed research study
has proven otherwise. The study, led by a psychologist, Jason Riis,
while he was completing graduate work at the University of Michi-
gan, compared forty-nine individuals on hemodialysis, three times
weekly, with forty-nine healthy individuals of the same age, race, ed-
ucation, and sex.1 All of the subjects were given electronic devices
that prompted them to record their moods throughout the day.
Moods were rated on a 5-point scale from very pleasant to very
unpleasant and subjects were given the opportunity to answer these
questions privately and repeatedly over time.
When the results of the two groups were compared, the re-
searchers found that the levels of happiness were about the same for
the two groups. The study also found that the dialysis patients over-
estimated how happy the healthy people would be and the healthy
people underestimated how happy the dialysis patients would be.
Why is it that we are so quick to assume that dialysis leads to unhap-
piness? On the contrary, we the authors have come to believe that if
Dealing with Emotions 115
you were relatively happy before dialysis, in time, you will be happy
after. Alternatively, if you were relatively unhappy before dialysis,
you will still be unhappy after. How a person copes with dialysis and
the attitude he or she adopts toward it is often reective of how
someone has managed to cope and the attitudes he or she has learned
to adopt throughout life.
Of course, dialysis is initially shocking for everyone. This initial
shock can cause a serious crisis for many individuals. Going on dialy-
sis can result in depression, anger, anxiety, and even occasionally an
emotional breakdown. It can also result in severe crisis in family rela-
tionships, which occasionally can result in separation and divorce.
However, in these cases the marriage was suffering to begin with.
Dialysis is simply the straw that breaks the camels back. There is no
question that individuals who have no other physical illnesses (such
as diabetes, strokes, heart disease) often do better emotionally than
individuals who have other major physical illnesses for the simple fact
that their burden is lighter. But after the initial shock has passed and
a person has become used to the new routines of the dialysis, he or
she settles down to live life within the constraints of the treatment.
During this initial period of shock, what are the tools that a per-
son can use to help ease this emotional distress? In this chapter we
will identify and discuss some of the most common emotional re-
sponses to dialysis. In addition, we will recommend ways to help you
deal with this emotional turbulence. The good news is that like most
kinds of turbulence, eventually this too subsides. By addressing and
tending to these emotional bumps, you may eventually, as the afore-
mentioned study shows, nd yourself just as happy as the next guy.
Throughout the years that Daniel has been visiting dialysis clinics
weve met many rather well-adjusted, seemingly happy individuals,
but most of these acquaintances rarely opened up to us about their
trials and tribulations when rst starting dialysis. Nor did they tell us
much about the sources of strength they used to help them survive
the tough times. But in the course of researching this book, Susan
met Jeffrey, a pastor for a medium-sized interdenominational church

who spoke candidly about the physical and emotional trauma of rst
starting dialysis and the important role that his faith played in help-
ing him to cope.
Jeffreys Story, a Hemodialysis

When Susan meets with Jeffrey, a middle-aged African American

gentleman, he strikes her as just thata gentle man. Jeffrey has been
on dialysis for only sixteen months and he explains that he is still
adapting to the transition. Like his father before him, Jeffrey suffers
from diabetes that eventually led to his renal failure. His father, one
of twelve children, had begun dialysis many years before. Jeffrey in-
forms Susan that he also has six uncles who have gone on dialysis,
and he says that he can identify at least four generations of diabetics
in his family. Because of this genetic disposition Jeffrey surmises that
he is the rst, but likely not the last, of the second generation of fam-
ily members to undergo dialysis.
Just four years earlier Jeffrey had been diagnosed with diabetes.
And one year after that, he was referred to a nephrologist who told
Jeffrey that his kidneys were operating at 40%. Jeffrey attempted to
watch his sugar levels, but he didnt think he was headed toward re-
nal failure or dialysis. Then two years later he noticed swelling in his
legs and ankles. Every evening he would elevate his legs and every
morning the swelling would be gone. What Jeffrey, who admits he
was in denial, didnt realize was that the uid was simply moving
around from one place to another. This routine continued until one
morning, as he was walking into the building where he worked, Jef-
frey collapsed. Paramedics rushed him to the hospital and the next
thing he knew he was being dialyzed.
At rst, Jeffrey says he really didnt think about what it meant to
be on dialysis. He just wanted the doctors and nurses to do whatever

it took to make him feel better. But he soon realized, he did not like
the catheter or the cramps he suffered as uid was removed from his
lungs and body. All told, during his week-long hospital stay the
medical professionals removed forty-ve pounds of liquid. After that
week, Jeffrey says he was a different person physically. It wasnt until
he went to his local dialysis clinic for the rst time after leaving the
hospital that dialysis began to impact him emotionally.
How were you affected emotionally?
Well, my father has been on dialysis for about eight years, so I
had been around it. I had helped him deal with his emotional roller-
coaster, but now I had to face dialysis myself. I think what bothered
me the most was watching my family deal with my illness. My kids
told me that Id always been the strong one. Id never been sick. Id
always visited other people in the hospital and comforted them. So
for my children to see me at on my back made them feel very help-
less. Having them see me this way was difcult for me. When I was
in the hospital, my daughter didnt even want to come to see me. She
didnt want to deal with it. Just now she has started to write some po-
etry about her experience when I went on dialysis. Finally, she is
learning to express herself more.
I think dialysis was also traumatizing for my wife. We were get-
ting ready to travel, to buy a new home and do a lot of things wed
dreamed of when the children were grown. I think she just had never
imagined herself in that predicament in her life.
What was dialysis like for you when you rst began?
When I rst started I had a lot of problems with my graft. Not
just anybody could stick me, and that was upsetting too. I have a
high pain tolerance, but it was frustrating when I would get a less ex-
perienced technician. Also the trial and error of trying to nd my
dry weight was the most difcult part. I didnt really know how
much uid I could have in between sessions, how much would neg-
atively impact me during and after my sessions. When I rst began,
I was arriving ten to twelve pounds over my dry weight. That wasnt
good. I would cramp during and after the session. Now when I come
in, they take off two or three pounds. Unfortunately, I had to learn
how to control my liquids the hard way. Until you start learning
what uid does to you and what certain foods do to you, you can
feel pretty bad. Adjusting to a new diet was a whole other can of
worms that I had to deal with. Over time I learned about my potas-
sium, phosphorus, and calcium.
What advice would you give to someone who is new to dialysis?
Really spend a lot of time talking. Talk about how you feel phys-
ically and emotionally. When I rst went on dialysis I read some
pamphlets, but honestly it was as if they were written in Chinese.
They were lled with information. I think it would have been help-
ful for me to read more about the psychological aspects of what a
person goes through in the beginning. I think visiting with a support
group or seeing a counselor might have also been benecial. I didnt
do either of these things, although I did regularly read a newsletter
that included personal testimonials. I found reading about other
peoples stories and what they went through to be extremely helpful.
I also had my wife read the testimonials too. They were helpful for
both of us.
I would also recommend that new patients speak with the veter-
ans in the clinic. Some of the folks here, the older folks (Im the new
kid on the block), they really helped me through a lot. They would
ask me How are you feeling? What are you going through? And
they would tell me what questions I should be asking the medical
staff. Having that kind of support and friendship was really very
advantageous.
What advice would you give to a family member of someone new to
dialysis?
Talk to somebody about what you are going through emotion-
ally. At rst there are a lot of emotions that the family and especially
the spouse are going through. But they dont want to share these
emotions with you because they feel that you have enough to worry
about. Despite this, family members also need an outlet or someone
to talk to. I wish initially my wife had done that more. She held a lot
of her emotions in for a long time. I think possibly talking to my fa-
ther and mother, or somebody who had gone through the same
thing, would have helped her a great deal.
Jeffrey says that when he rst began dialysis his wife took time off
from work to drive him dialysis. Because he didnt want her to feel
like she had to spend so much time caring for him, he tried to get
back on his feet as quickly as possible. Jeffrey tells Susan, I think
getting back to a relative state of normal where I could drive myself
has helped a lot. I also think it helped that I opened up and said to
her, Tell me how you feel. I think she wanted to know what I was
going through emotionally as well. This was important for her. It
was difcult for me, at rst, to share my feelings with her. In the be-
ginning I didnt really like to talk about it. I would just say Im feel-
ing pretty good!
Interestingly enough, both Jeffrey and his wife were trying to pro-
tect one another from the distress that they individually were en-
countering. Jeffrey didnt want to burden his wife with having to
take care of him. He didnt want to tell her truthfully how he was do-
ing and felt that he had to rebound and adjust just as quickly as pos-
sible. Likewise, his wife felt angry and sad that their life was no
longer what she had envisioned, but since she was the healthy one,
she felt she couldnt share these emotions with her husband. During
a stressful time the two tended to keep their feelings to themselves.
Eventually when they began communicating more openly and hon-
estly with each other they began to cope better emotionally.
In addition to addressing your emotions, what are some additional
key success factors to living well on dialysis?
Really, every individual is different. I think if it wasnt for my
faith, perhaps I would have a very different outlook on dialysis and
on life. Most of my life Ive tried to encourage people to live well
despite adversity. Suddenly I had to live as Ive always preached.

Along with my faith, I also have a strong support system in both my
family and my community, which has helped me to stay positive and
optimistic.
Are there any benets to being on dialysis?
SureIm glad we have it! Dialysis is doing what my kidneys
cant do. I also think it has made me a better pastor. Im more pas-
sionate about habits that affect our lives in a negative way. Ive only
missed one Sunday at church since Ive been on dialysis. The week
I left the hospital I missed preaching, but the following week I was
there. That rst Sunday after I began dialysis I looked out at the con-
gregation. I really looked at the people who had been sick. Many of
the congregants had been ill for years. And I realized that our health
issues are a collective problem. We live in a society that promotes
unhealthy lifestyle habits. Now Im much more conscious about
healthy living and am an advocate of better health. Ive even started
a wellness program at the church for people to get their blood sugar
checked regularly.
Jeffrey tells Susan he credits his faith, his motivation to help oth-
ers, and the support of those around him as giving him the strength
to cope, but he acknowledges that going on dialysis was tough. Phys-
ically it has been hard on him. Emotionally he has grappled with a
sense of failure and weakness, fearful that he has let his family down.
But fortunately Jeffreys sense of accountability to his congregants
whom he has preached to for so long has been his saving grace. As he
tells Susan, For many years I had talked the talk. Now I had to walk
the walk.
Like the veterans he speaks of, Jeffrey strikes Susan as a man who
has gone to battle with his physical and emotional demons and who
has now crossed over to a safer place. In order to be a role model, Jef-
frey was forced to nd a way to cope. He admits his new schedule
and lifestyle still require adjustments, but he also tells Susan he
hopes to start traveling with his wife more, he is working full time,
and hes looking forward to seeing his daughter graduate from high
school soon. Susan cant help noticing that he is living well and en-
joying life despite dialysis. Before they part ways, Susan nds herself
contemplating what sources of strength or coping mechanisms she
would draw upon if she were ever to walk in Jeffreys shoes.
Once the Shock Subsides: Coping with

Psychological Aftershocks
Like Jeffrey, most patients whom we met told us that it took some
time for their physical health to improve signicantly before they
could begin to feel, much less deal, with the substantial emotions as-
sociated with this enormous life change. When they begin to feel bet-
ter physically is when many patients start to feel anxious, depressed,
or angry. Family members are also highly susceptible to these emo-
tions. It is normal and understandable to experience them. But the
people who do not do well on dialysis are the ones who cannot, over
a normal course of time, address and move past these emotional
states. Some individuals never cope well with dialysis. They think
their life has been forever limited and they absolutely hate the thought
of having to go to dialysis three times each week as long as they
liveor until they receive a transplant. Emotionally, these are the
people who do not do well. Now lets look at some of the most com-
mon emotions that can negatively impact dialysis patients and their
families, what happens to those who do not cope well, and what cop-
ing mechanisms a person can rely on when working through these
emotions.
Denial
Denial is often the very rst reaction of many dialysis patients. De-
nial is a state of nonacceptance. When in denial, a person refuses to
accept the fact that he or she is on dialysis. Obviously the person can
see himself or herself receiving the treatment but chooses to believe

that it is temporary and that all will return to normal in a few weeks
or months. In this state a patient typically refuses to follow the diet
or acknowledge the liquid restrictions. He or she continues to act
and behave as before starting dialysis. The patient is neither angry
nor depressed; he or she simply refuses to believe that life on dialysis
is now a reality. As we all know, innocence can be bliss, but dialysis
patients cannot stay in this state forever. It is only a matter of time
before their denial causes their health to decline precipitously.
Sadly, many of the individuals whom we interviewed claimed not
to have believed what the doctors told them regarding their diet and
liquid restrictions. Too many said they had to learn to take care of
themselves and heed their doctors advice the hard way. This was un-
fortunate, because this learning path usually meant jeopardizing
their lives. Denial, while common, is not a particularly helpful re-
sponse to the newness of dialysis. As one physician we interviewed
said, Like so many things in life, dialysis is a head game. Most pa-
tients wont do well if they struggle and ght against dialysis rather
than work with it. Denial or the inability to come to terms with dial-
ysis prevents some people from doing as well as they might. Can you
get by when you are messy and inattentive and dont comply with in-
structions? Yes you can, but if you want to do better you need to
have your thoughts together and understand what is being asked of
you. And by understand I generally mean you have to do what you
are told. Patients are much better served the sooner they can accept
their reality and work within the guidelines that are set forth by their
medical team. One way or another, reality will eventually sink in and
when it does patients are then most often confronted with feelings of
anxiety, depression, or anger.
Anxiety
Anxiety makes one feel uneasy, fearful, nervous, and worried. Physi-
cally one can experience a quickened pulse, lethargy, irritability, and
increased sweating. There are numerous sources of anxiety that pa-

tients associate with dialysis. Lets start with the whopper, the big
kahuna of them all: anxiety about death. One patient we spoke with
had the very terrifying and unfortunate experience of watching as a
woman who was sitting across from him at dialysis went into cardiac
arrest. Sadly, he witnessed her death. And of course, one of the rst
thoughts to cross his mind was, That could be me. I could die.
And that was an extremely frightening thought. It shook him to his
core. His experience that day was extreme and unusual, but even
without having such a jarring experience you too may be growing
anxious over the thought that dialysis has brought you a bit closer to
your mortality. Before dialysis, you might have thought you were in-
vincible (although in reality you werent) and now you know you are
not. True, now that you are on dialysis, statistically speaking, your
chances of dying are greater than they were before your kidneys
failed and you needed dialysis. There we have said it: you may die.
Dwelling on this fact can be paralyzing and unhealthy. Now it is
time to move on. The good news about facing your mortality is that
once you realize you wont be on this earth forever you may actually
appreciate certain aspects of life more than you ever did before dial-
ysis. However, becoming accustomed to this new level of awareness
can and does often heighten levels of anxiety.
Dialysis patients are often anxious about death, but this is not the
only common cause of anxiety. Many times they are anxious about
the actual dialysis process itself; they are afraid of the needles, of see-
ing their blood outside their body, of feeling pain, of sitting among
other patients who are signicantly sicker than they, wondering if
the treatment actually will work as intended. Feeling acutely anxious
about all of the above is normalfor a timebut human beings
are remarkably adaptable. As the novelty of dialysis wears off, you
should become increasingly comfortable with what goes on inside
the clinic and the patients who frequent the clinic. No one wants to
get used to dialysis, but many people do. Or at least they do enough
to muddle through while taking ample pleasures from life. However,

if feelings of anxiety persist indenitely, it may be time for you to
seek out additional sources of assistance. Well discuss these re-
sources shortly.
Now that you are dependent on dialysis to live, you may also be-
come anxious about what would happen to you in the event of a nat-
ural or terror disaster. Of course, it is not likely that youll ever have to
deal with either of these happenings, but even so, this is not an un-
reasonable fear to have. In times of crisis basic needs must be met. For
most people, their basic needs are food, water, shelter, clothing, and
medical care. For someone on dialysis, being able to access electricity
or supplies for peritoneal or home hemodialysis or a hemodialysis
center is another basic need that must be met. As you listen to the
world news and hear of the latest natural disaster it is normal to
think, What would happen if the power were to go out, the roads
were to be washed out, or I was to be snowed in? What would happen
to me, if I could not get to the clinic or perform my own dialysis? How
long could I survive without dialysis? These thoughts are scary, and
while we can nd comfort by being prepared for emergencies (see
Chapter 10 regarding travel and emergency preparations), we can
still get worked up and nervous by constantly imagining doomsday
scenarios.
These types of what if questions bring us to another common
source of anxiety: a fear of losing control. Many of us like to have a
sense of control over our lives, days, actions. We think that by mak-
ing lists, schedules, plans, routines, or goals we can inuence the
course of our lives. This may be so, but there are also events we can-
not control that impact us profoundly. Going on dialysis is one such
event. Losing this real or perceived sense of control is often the pri-
mary anxiety trigger for many individuals. For people who demand
control, the best course of action is to gain knowledge and under-
standing and in some cases even pursue a modality that allows for
greater self-management and care.
Last, many individuals experience worry and anxiety about how

and if they will be able to continue to work and be a provider for
their family. Financial concerns are a huge source of anxiety for
many dialysis patients. Or, as we saw with Jeffrey, some people may
be anxious about how dialysis will affect their family not just nan-
cially but emotionally as well. This sense of concern and responsibil-
ity for the well-being of their loved ones can be an additional source
of anxiety.
Depression
By far the most common reaction to undergoing dialysis is depression.
Statistics show that up to 40% of people with nonfunctioning kidneys
experience depression at some point in time.2 Larry whom we met in
the previous chapter told us, I wish Id known before I went on dial-
ysis that the toxins that were gradually increasing in my system as my
kidney function declined commonly can cause depression. In addition
to being somewhat more forgetful for the few years prior to dialysis, I
know that I found myself emotionally overwrought at times. I cer-
tainly considered going into therapy and getting medication. I think it
affected my relationships with my wife and children. I wish Id known
the emotional impact that the toxins were having on me because after
those rst three weeks of dialysis all of a sudden it was sunshine. In
Larrys case his depression was corrected by going on dialysis; however,
some individuals actually nd the situational stress of dialysis to per-
petuate depression. Or as Elena of Chapter 3 told us, The rst thing
that will happen when a person begins dialysis is he or she is going to
be depressed. You start treatment and you are so depressed. And to
second that thought, a dialysis social worker whom we met explained,
I stop by every treatment at the beginning so I can see how the per-
son is adjusting. Adapting to dialysis is not easy. Everyone has a hard
time and depression is really common.
Symptoms of depression include feelings of sadness, loss of
appetite, insomnia, difculty concentrating, lack of interest in life,
a tendency to withdraw from others, and an unwillingness to en-

gage in activities that once brought pleasure. Patients often become
hopeless and encounter feelings of despair when they learn that
they have to undergo dialysis. Sometimes they see no light at the
end of the road and some patients even become profoundly de-
pressed. If the depression lingers, it can become more severe and
can pose a threat to the patients life. In the extreme reaction, pa-
tients become suicidal and occasionally attempt or even commit
suicide. This is, however, very rare.
Depressed individuals often blame others (nephrologists, nurses,
technicians) for their illness and refuse to take any responsibility
themselves. Any problems that occur in the clinic are somebody
elses fault. If the technician has a hard time sticking the needle into
the access, he is incompetent. If the patient becomes light-headed or
nauseous, it is the nurses fault. It is always somebody elses problem.
The fact that a person has a serious illness and that the machine lit-
erally saves his or her life is not something that the individual can
appreciate in this state.
Like anxiety, depression can be short-lived and pass after a num-
ber of days. However, if depression persists longer than a few weeks,
once again there are resources available to help you move on. It is
important that you communicate openly and honestly with your
doctor and social worker about how you are feeling emotionally. If
you do so, they will be able to identify when you might need coun-
seling or medication to help treat your depression. Sometimes when
we are depressed, we are the last ones capable of identifying or diag-
nosing our depression.
Anger
Feelings of depression and despair can easily mutate into anger. When
patients feel tremendously sorry for themselves, they at times become
enraged at themselves, their loved ones, the caretakers, anyone within
earshot. They are so furious that they have been given a raw deal in
life that they scream, yell, curse, and at the end of the day, do not feel
better. Of course, wondering Why me? is normal for a while. Yet if
the patient cannot move past this sense of injustice, a constant
lament of Woe is me can become toxic and antiproductive. These
patients have temporarily lost an important part of living with ad-
versity. They can no longer take a step away from themselves and re-
alize that they should be grateful to be alive. Yes, they have to go to a
clinic three times a week as long as they live or until they receive a
transplant. And yes, even if they travel to the end of the earth, they
still have to be on dialysis three times a week. But they can work,
play, make love, and enjoy most of their waking hours each week.
However, an ongoing sense of anger and frustration at the world pre-
vents them from seeing this reality. Like anxiety and depression,
anger is a completely understandable emotion for an individual to
experience when rst starting dialysis. However, learning to release
this anger and move on is necessary in order to enjoy an improved
quality of life.
One patient told us that when he began dialysis, his family suf-
fered a great deal from the severity of his moods. He found that he
was angry at them all the time. He told us that he wished he
had understood how his transition to dialysis was impacting him
emotionally. Had he known that anger was a normal response he
might have tried to redirect it elsewhere, or, at least by acknowl-
edging it, he might have been able to control it better. However, at
the time he didnt understand that he was just so very angry about
having to go on dialysis. He wasnt able to express or communicate
his anger appropriately. He attempted to keep it bottled and hid-
den. However, his rage boiled up anyway and he found fault with
everything and everyone around him. In time he learned to live
with his lot, his anger subsided, and his home life improved. But
he still regrets the way he treated his loved ones and wishes that he
had been more self-aware as to what was happening with him

emotionally.
Paranoia and Psychosis

Unlike anger, which is quite common among dialysis patients, paranoia
and psychosis are two relatively uncommon emotional reactions, but
still worth noting here. For a very small percentage of individuals,
dialysis can lead to these highly troubled emotional states. We have
witnessed a few individuals on dialysis who were extremely paranoid.
In these cases and others, patients are not simply anxious or angry.
They take their anger a step farther and believe that everyone,
other than themselves, is responsible for their problems. They truly
believe that all the people who care for themthe doctors, nurses,
techniciansare determined to hurt them. Dialysis is a conspiracy to
ruin their lives and they have been victimized by poor care. They may
often yell or scream at the staff, sharing their deluded views with every-
one in shouting distance.
Another response to dialysis is to have a complete mental break-
down or what the medical establishment would call a psychotic
break. Dialysis doesnt cause the breakdown. Rather, a patient is
significantly mentally ill to begin with, and dialysis simply pushes
the individual over the edge. A patient who has a breakdown loses
the ability to think rationally, often acts out violently, may attempt
to pull out needles during a dialysis session, and may require re-
straints in order to sit still throughout a treatment. This is not a
pleasant scene for other patients to witness. Given its rarity, we
simply raise this reaction to dialysis in hopes of preparing you,
should you be in the uncomfortable position of witnessing such a
disturbance. In instances of patients suffering from mental illnesses
of great magnitude, either paranoia or psychosis, psychiatric treat-
ment including medication can be initiated and patients can im-
prove markedly.
Healthy Coping Mechanisms

and Resources
What if you cannot get past your normal feelings of anxiety or depres-
sion or anger? What then? Well, you may need some assistance. Assis-
tance comes in many shapes and sizes and there is no shame in needing
help emotionally. As weve heard before, starting dialysis is a big deal.
Usually events of this magnitude present emotional hurdles that must
be overcome. You may think that you are doing ne, but if you cant
sleep at night, or if you are breaking into a cold sweat every time your
dialysis machine beeps, or if you notice that everyone from the recep-
tionist to the technician seems to be giving you dirty looks in response
to your behavior, then it might be time to acknowledge that you arent
coping so well. There are several resources available to you. Usually the
hardest step is knowing to ask for help and knowing that this is not
a sign of weakness. In actuality it is just the opposite; it is a sign of
strength to be able to know when you need support. The most com-
mon sources of assistance in coping include family and friends, profes-
sional counselors, support groups, medication, faith, and spirituality.
Family and Friends

As we saw with Jeffrey, his rst reaction toward dialysis was to try to
be strong for his family. He didnt want them to worry and so he
didnt really let them in or tell them what he was going through. The
people with whom he felt the most comfortable sharing his concerns
and feelings turned out to be his new friends, the other patients
whom he met at his clinic. He found that talking with them was an
excellent source of comfort and information. And in time he did be-
gin to open up to his spouse, which he admits really helped both of
them emotionally. There is a difference between complaining and
communicating. Being able to introduce your loved ones to what
you are experiencing is an important step in the coping process. In
the past, Daniel has commented to Susan that having Margie in his
life makes dialysis signicantly more bearable. He added, I feel
that I have an ally, someone who could go through the battles with
me, which makes a huge difference. We hope that all our readers are
fortunate enough to have someone like that in their lives.
Other family membersfor example, young children or adoles-
cents living at homeoccasionally nd it difcult to deal with the
dialysis patient. The illness should be carefully explained to them,
and as much as possible, they too should be part of the team.
A ne balance needs to be struck between support and reliance.
Leaning on your loved ones for concern and understanding is im-
portant. Yet both the family members and the patients themselves
should be careful not to underestimate the patients capabilities. In
other words, dialysis patients shouldnt be babied too much or too
long. It is important for dialysis patients to reclaim their indepen-
dence and productivity as much as possible.
Despite this, the spouse of the dialysis patient often does have to
spend some of her or his time taking care of the dialysis patient.
Even under the best circumstances, three times a week the patient
comes home from dialysis and he or she is weak, tired, and in need
of a little extra attention. The four non-dialysis days are usually bet-
ter, and the patient can take care of himself or herself. As the weeks
roll into months and years, the caregiver needs to have what has been
called respite care. The spouse of the dialysis patient needs to do
something for himself or herself that does not involve the patient.
For example, a spouse can go to a resort, go hiking, visit relatives in
another city or country, or even just go to a movie or a theater per-
formance. On returning, he or she will feel reenergized.
Margie is a huge advocate of the benets of respite care. Over the
years, off and on shes experienced periods of feeling burned out. Not
often, but at times, she experiences a weariness that comes with in-
creased worrying about Daniels health. Since Daniel went on dialysis,
Margie has been fortunate enough to take an annual trip on her own.
Most notably, she has gone hiking and camping with tour groups in
National Parks throughout the United States and Canada. Daniel is
not a fan of camping or hiking, which is why these trips are a partic-
ularly good outlet for Margie. Although he misses her, he is not
resentful of her experience and she is able to do something she loves,
something that is just for her. Her weeks outdoors are very rejuvenat-
ing and she returns home ready to resume her routine of providing
tender loving care and encouragement for Daniel.
Professional Counselors
Although we often want to rely on friends and family members to pro-
vide all the help well need, sometimes when they are also trying to cope
they cant always provide the most objective or adequate counsel. Espe-
cially in the beginning, as weve mentioned, family members are often
struggling themselves with the new circumstances. To have an open
line of communication is important, but it is equally important to real-
ize a family member or friends limitations. Sometimes we may benet
from the expertise of an unbiased professional who is trained to help in-
dividuals undergoing stress and emotional upheaval. Every dialysis
clinic has a social worker on staff. Social workers wear many hats in-
cluding that of travel expert and nancial counselor. However, their
intended role is to provide psychological counseling and emotional
support to dialysis patients and their families. Although many patients
do not want to spend one minute longer than necessary at the dialysis
clinic, they may be well served to make an appointment to talk with the
social worker. Or, you can even ask the social worker to come and meet
with you while you are dialyzing. Sometimes social workers may even
refer a patient to a counselor outside the clinic. The costs of an external
counselor may be partially or completely covered by Medicare.
Daniel is a psychiatrist by trade and has spent a lifetime treating
individuals in need of emotional assistance. When he rst went on
dialysis he himself sought out the help of a psychiatrist outside of his

clinic with whom he could meet weekly. Margie did as well. They
found having someone to talk with condentially who could be
completely objective and willing to listen to what they were going
through was helpful. Similar resources are available to you if you
seek them out.
Support Groups
The social worker at the clinic will also be knowledgeable of any
support groups in the area for dialysis patients and their families.
Many times just hearing that what you are going through is normal
and that others are experiencing the exact same thing can be a great
source of comfort. There are also support groups for individuals
awaiting transplants, and you may be interested in investigating
one of these. Like the community in the dialysis center, support
groups can assume healthy or unhealthy dynamics. When you at-
tend a support group, it is important to try to gauge which type of
group you have found. Is it the type that truly provides support,
helpful tips, and inspirational stories? Or is the type that quickly
dissolves into a black hole of complaining, negativity, and wallow-
ing? If youve arrived at the first kind, great! This might be a good
place for you to help process all the changes going on in your
life among other people who can really understand and relate.
However, if youve landed with the second kind, leave and dont re-
turn! Attitudes can be contagious, and sticking with an unhealthy
group dynamic can make you susceptible to catching these nega-
tive bugs.
Medications
Your nephrologist or your psychiatrist, if you are referred to one, can
determine whether your anxiety or depression should be treated
with the use of medications. If anxiety or depression becomes para-
lyzing, debilitating, persistent, and generally preventive of your
ability to enjoy life, then medications may be in order. Many dialy-

sis patients and family members benet from the use of anti-anxiety
and antidepressant medications. Fortunately, we live in a day and
age when the types of medications available are very effective, and
many have minimal side effects. There is no weakness in turning to
medications for help, and there is no reason to be a martyr or suffer
needlessly. There is no shame in using medications to care for your
mental health just as you would use medications to care for your
physical health.
Faith and Spirituality

Jeffrey spoke of his faith as grounding him and helping him to
cope with his life on dialysis. A belief in God or a higher power
can be comforting and reassuring to many during times of hard-
ship. Spirituality can take on various different forms depending
on ones beliefs. Being able to acknowledge that we are not in con-
trol and that there is someone or something far greater than us
can be especially helpful in overcoming anxiety, depression, and
anger.
Spirituality may include meditation, prayer, or attendance at a
house of worship. Talking with a priest, cleric, or rabbi about life on
dialysis and what you are dealing with can also be an excellent outlet.
Spiritual leaders can often provide compassion, understanding, and
advice. Typically, they have experience with helping members of
their community cope with adversity; as a result, they may be able to
share the collective wisdom theyve gained by counseling others who
have turned to them for solace.
Whether you opt to rely on family, friends, a support group, a so-
cial worker, psychologist, psychiatrist, your faith, spirituality, and/or
medications, it is important to remember you need not take this
journey alone. There are numerous resources available to help you
weather the storm until you can reach calm waters.
Once the Storm Has Passed, Maintaining

a Positive Outlook
Once youve dealt with the initial shock, anxiety, depression, and
anger, you will still need to cope with dialysis one day at a time for as
long as you are receiving this treatment. Over time, most people nd
that being happy while living on dialysis becomes progressively eas-
ier. However, you may have setbacks along the way; when these arise
you may need to rely a bit more heavily on the coping mechanisms
weve outlined above. But when the worst has passed, what are the
day-to-day techniques you can employ to ensure that you maintain
a good outlook on life? There are several. Many listed below have
earned their own chapter in this book, but wed be remiss not to
mention them briey here as they are the most common techniques
mentioned by dialysis patients and health care providers alike:
1. Laughter. As we read in Chapter 4, laughter is critical. Almost

every person we met with said the ability to laugh and not take
life so seriously was liberating and rejuvenating. And one patient
told us, If I didnt have humor Id probably be dead right now.
2. Work or volunteerism. Finding a reason to be and to contribute
to others can provide an ongoing wealth of self-esteem and self-
condence.
3. Exercise. Exercise has been proven effective at positively enhanc-
ing our moods through the chemical release of endorphins.
4. Travel. Travel breaks down the monotony of the dialysis sched-
ule. It may not introduce spontaneity back into life, but it does
transport a person to an entirely different place for a period of
time.
5. Knowledge. Knowledge is power and it is why we decided to
write this book. By learning about your disease and your treat-
ment you can lessen your fears and concerns.
The more you are able to put these suggestions into action, the less
you will have to work at staying positive: it should come naturally. As
it does, if you watch, you may notice something interesting begin-
ning to happen. Healthy people, whom you encounter during your
daily walk of life, will not shy away. In fact, they will enjoy your com-
pany. They may not even realize you are on dialysis and might even
be astonished to nd out. Or if they do know you are on dialysis, they
may even begin to admire and look up to you for your ability to live
well in the face of adversity. You will become a role model. Of course,
the main reward of coping well is being content with life. This is our
primary wish for our readers. But the unexpected respect and admira-
tion of others can be a very welcome secondary benet.
Seven
The Impact of Dialysis on

Interpersonal Relationships
Love, Sex, Family, and Friendship
oss a rock into a body of water and watch as the water cas-
T cades from where the rock hits the surface. Now imagine that
someone on dialysis is much like that rock being tossed into the wa-
ter. The impact on the water is greatest at the center, the location of
where the rock hits the surface. But, like the cascading water around
the rock, those around a person on dialysis feel the reverberations
of the impact and are profoundly affected as well. The more inti-
mate you are with the person, the larger the ripple. Spouses, chil-
dren, parents, and others very close to the person must endure the
strongest impact. Those on the outer peripheryfor example, a co-
worker or a simple acquaintancemay feel only the slightest blip
or even calm. This chapter is written to help those near and dear to
a dialysis patient ride the waves of dialysis successfully and to help
patients understand the inevitable reverberations taking place
around them.
This ripple effect was articulated by Keith, a middle-aged African
American man whom a social worker had identied as someone liv-
ing well on dialysis. In total, Keith had spent four plus years on
dialysisthree and a half on hemodialysis and one on peritoneal.
The Impact of Dialysis 137
Although Keith performed peritoneal dialysis from the comfort of

his home, he and Susan agreed to meet in an empty room at the dial-
ysis center where hed periodically go to have his labs tested. As he
signed the consent form that assured him of anonymity, Keith said,
Go ahead and use my name if you want. Whatever I tell you, Id tell
anyone. Im an open book. Despite his assurances, we felt com-
pelled to mask his true identity.
Keiths Story, a Perspective of

a Peritoneal Dialysis Patient
During the course of their conversation Susan learned that Keith

had not had the easiest life. Both he and his wife were recovering
drug addicts and alcoholics. At the time of the interview, he had
been sober for eleven years and his wife for ten. His kidney failure
was discovered during an optional routine blood check provided
by his employer. His tests showed that he was perilously close to
needing dialysis. Feeling perfectly fine at the time, Keith was
stunned. In fact, he didnt believe the doctors and refused to
have an access built until his body became so bloated with fluids
that the physicians explained he would die without immediate
treatment.
Keith told Susan the doctors were unable to declare with certainty
the cause for his kidney decline, but off and on he has wondered if it
was from the years of drug and alcohol abuse. Now he simply chalks
it up to fate. During the course of the interview Keith opened up to
Susan about some of the most sensitive and intimate details of his
family, marital, and sexual life after having gone on dialysis.
Have you found that peritoneal dialysis is better than hemodialysis?
I like it better as far as lifestyle goes. I can dialyze from home in the
evenings. Also I hated the huge needles that they use for hemodialysis.
Ive seen some peoples arms beaten up from years of injections and
I didnt want that. On the ip side, they put the catheter down so low
in my abdomen that it can be aggravating when my pants arent loose
enough. You have to be conscious of it at all times.
Has the location of the catheter impeded your sex life?
Well I was about to mention that, but didnt know if it was ap-
propriate. Yes it has. Now when Im undressed Im very conscious
that someone can see this tube hanging out of my stomach. You al-
ways have to keep it clean and now Im worried that my or my wifes
body uids will get in there.
Has dialysis affected your sex life?
Yes, my sex life after going on dialysis in generalnot just peri-
toneal dialysishas faded drastically. So much so that I had to talk
to the doctor here. He even offered to talk to my wife. She thought
it was her. I kept trying to tell her, Baby its not you; its the disease
you know. It has nothing to do with you. But, she wasnt buying
that. My drive is not there. Basically it is nonexistent. Dialysis has
been disastrous on my sex life.
Did you expect to encounter sexual side affects when you went on
dialysis?
When my kidneys rst failed, everyone told me this was going to
happen. But my ego kicked in and I went on a mission to prove
them wrong. I went out and cheated on my wife. I dont know if that
is an excuse or not, but that is what I did.
Keith explains that his indelity created a serious rift in his mar-
riage of sixteen years. After receiving a confrontational phone call
from Keiths mistress, his wife left home for two weeks. Keiths at-
traction to the other woman was not singularly sexual. He described
her as being more someone that I could talk to than have sex with.
Eventually Keith and his wife sought counseling, but his wife was ex-
tremely angry and upset. Luckily for Keith, his wife acknowledged
that she had received second, third, and fourth chances during his
rst year of sobriety. At that point in their marriage she was still
struggling to kick her habit, but Keith stuck with her. In return she
decided she would forgive him this one betrayal.
What would you have liked to have read about soon after starting
dialysis?
I havent read or seen anything about the sexual part of it. When
my wife and I rst started having problems I asked the doctor if he
had any literature about sex and dialysis. He didnt. I think something
should be available because it is a very real part of dialysis patients
lives. All the men Ive spoken to have encountered the same issues.
And my wife recently spoke to a woman on dialysis whose husband
left her in part for the same reason. I think there are many husbands
and wives walking around feeling like they arent attractive any
more.
How does your wife feel about your sex life?
There used to be a time where I wanted sex all the time and she
would push me away. I told her, I cant believe all these years Ive
been chasing after you and youve been pushing me away, and now
that my kidneys fail you want sex every night!
How do you respond to her needs?
I look at my wife and know that I need to take care of her sexually
but its just not there. There is about to come a time when Im going
to need to force myself just because and that will be awkward.
Are there other ways that your wife and family were impacted by
dialysis?
In the beginning I went from depressed to angry. I was pretty hard
on my family when I rst started. My ten-year-old daughter is the love
of my life. She and my wife caught hell. I was grouchy. Mean. They
werent used to my behavior. Suddenly they found themselves getting
snapped at for little things.
Do you think your wife was afraid youd die?
Youd have to ask her. She knew it was an alternative that Id con-
templated. At rst, I told my wife that I didnt want to spend my life
this way, that I just wanted to let it happen and die. She told me,
You better suck it up and not cop out.
What role have your wife and daughter played in your transition to
dialysis?
Well my daughter was spoiled rotten and continues to be spoiled
rotten! She and my wife are the reason Ive managed to adjust. No
matter how grumpy I get, they keep coming back for more. They are
my support system and the most important part of living well on
dialysis is having a support system. I cant stress how helpful theyve
been. It is just so important for people around a dialysis patient to be
supportive through the good days and the bad days.
Keiths tale of indelity may sound a bit extreme to someand cer-
tainly is not representative of every dialysis newcomers experience
but the inherent themes he raisesseismic shifts in his marriage,
issues of virility, diminishing drive, care giving and supportare not
uncommon among dialysis patients. What is uncommon is actually
discussing them openly. Dialysis patients may talk discreetly among
themselves, but from what weve seen and heard, very little informa-
tion about interpersonal dynamics and challenges has been captured
and made available to the dialysis community. In the rest of this chap-
ter well discuss the different variables that impact those around a dial-
ysis patient from the center of the ripple outward: from spouse to child
to friend to acquaintance.
The First and Biggest Wave:

The Primary Caregiver
Who Is a Caregiver?
Typically a caregiver is a spouse or parent, or occasionally an adult
child whoaside from the person actually undergoing dialysiswill
be impacted the greatest. For the sake of simplicity we will refer to the
primary caregiver as the spouse, although we acknowledge that there
are many situations in which this is not the case. As we describe the
role of the spouse and the effects that dialysis has on the spouse, most
topics of discussion (with the exception of sexuality) are transferable
to other individuals who may ll the role of primary caregiver.
Whether or not you consider yourself a caregiver is debatable. A
dialysis patient is not an invalid and does not require round-the-clock
care. In fact, dialysis patients want to be treated like anyone else. But
they do sometimes have bad days, feel weak or tired after dialysis, or
encounter medical complications. During these times, they will look
to someone to lean on for support and to ease their fear. The person
closest to them will by default assume this responsibility and by doing
so will on some level step into a caregiving role.
Also bear in mind, for some dialysis patients, there is no primary
caregiver. The patient simply takes care of himself or herself. For ex-
ample, earlier in the book we met Elena who lived with her parents
when she rst started dialysis and then later lived on her own as a
single woman. Having a primary caregiver is not a prerequisite for a
dialysis patient. However, if you are married and your spouse goes
on dialysis you will to some extent suddenly nd yourself in this new
role. This next section is directed to all those on the front lines. You
may not be sitting in the chair, but you are the one who must con-
tend with the nutritional requirements, mood swings, and medical
complications that affect your spouse. While it certainly isnt the
same as being on dialysis, at times it may not seem fair that your life
is changing signicantly as well.
Stresses on the Ties That Bind

As we saw from Keith, transitioning to life on dialysis can put an
enormous strain on a relationship or a marriage. Over time, mar-
riages go through ups and downs. When a husband or wife begins
dialysis, it is safe to say that the marriage may encounter a down.
We speak from experience when we say that the introduction to dial-
ysis can initially be rough on a couple. And rough is something of an
understatement. The transition to dialysis, which is a stressful time,

can really test the strength of a relationship.
Why does this happen? With the introduction of dialysis you sud-
denly have two individuals who in their own ways are dealing with an
assortment of emotions that include but are not limited to guilt, re-
sentment, fear, anger, disbelief, frustration, self-pity, confusion, and
worry. Each one in his or her own way is grieving the life that must
now change to accommodate dialysis. Now imagine these two very
anxious, stressed-out people living under the same roof. Chances are
they will have short fuses and will be inclined to snap at one another.
Similar to Keiths experience, couples may take out their anger and
frustrations at the closest easiest targetsone another. They may nd
themselves being very unpleasant to one another and may even grow
distant. Generally speaking, they may have a very difcult time living
with each other, much less loving each other.
Like many marriages that encounter high-stress situations, some are
unable to withstand the pressure associated with these reactions. We
have known dialysis patients and their spouses who have separated or
divorced. Divorce is a part of life and dialysis patients are not exempt.
On the other hand, a social worker who had worked with dialysis fam-
ilies for over three decades said she felt that divorce rates were very low
among dialysis patients and their spouses. She suspected the low rate
of divorce was due to the enormous amount of guilt associated with
leaving a person who is sick. We really dont know if the divorce rates
are higher, lower, or the same among dialysis patients as compared to
the rest of the population. What we do know is this: during periods of
adjustment to dialysis, marriages are stressed, sometimes to their limit.
Some marriages succeed. Others do not.
If you are going through a rough patch, dont despair entirely. Bear
in mind that time and patience can be your most valued friends. Sig-
nicant life changes take time to adapt to. These changes will put de-
mands on your relationship to change. If the relationship is built on a
solid foundation a couple will successfully adapt. However, a spouse
needs to be patient and allow for these changes to take place over the
course of days and months. On the ip side, if the relationship is
healthy and strong, dialysis may eventually bring a couple closer
together.
Because dialysis is a humbling experience for all involved, it can
make individuals have a greater appreciation not just of their life but
of the people in their lives. Typically when we appreciate a person
more fully, we treat him or her with a greater love and respect. If you
are lucky enough to persevere through the changes and challenges of
adapting to dialysis you may be fortunate to come out with an even
more loving relationship in the long run.
Once the initial introduction to life on dialysis has been worked
through and a couple has gotten into their new groove, they still
arent home free. Intermittent stresses and strains may come and go
throughout the marriage whenever a new medical issue, whether
temporary or permanent, arises. We liken this process to walking on
a balance beam. Before dialysis, you and your signicant other are
condently walking across the beam in lockstep one following the
other. Then along comes dialysis and bam! You are both knocked to
the ground. Hopefully with luck and perseverance you nd your
way back up on that beam. Until one day, a new medical issue arises.
When this happens, depending on the severity of the issue, you
may tumble to the mat again (and with that comes renewed ghting,
distance, disharmony), or perhaps the two of you simply lose your
footing, wobble a bit, then nd your equilibrium and continue on.
And so it goes. Continuously nding your way back up on that beam
and learning how to maintain your balance is a critical skill you must
now master.
Asking for Help and Education

Finding your own resources for support and increasing your own
knowledge about dialysis will be critical when seeking this equilib-
rium. Now that the person closest to you is relying on dialysis to live,
you may contemplate what would happen if he or she dies. You may
have an overwhelming fear of being alone. You may struggle with
how to be more independent and less reliant on your partner for self-
denition. You may be extremely fearful of your partners pain and
suffering, now and in the future. You may even harbor feelings of re-
sentment or anger at this person whom you love, for putting greater
constraints on your lives together.
In light of what your loved one is going through, some of your
feelings might seem petty, selsh, and hurtful. But they are normal.
Obviously you may not want to share these fears or feelings with
your husband or wife who is on dialysis. Your partner is already cop-
ing with all he or she can handle. But keeping these emotions re-
pressed will be a disservice to your own well-being and eventually to
your marriage. They will keep you from regaining a solid footing.
If you nd yourself overwhelmed at the thought of being alone,
having a difcult time, or feeling sorry for yourself, it is important to
try to talk to somebody. As we said, you may not want to burden
your husband or wife. Your children may already be coping with the
mortality of their parent. It is better to seek out a professional, a spir-
itual adviser, or a close friend whom youve found helpful in your
life. In either case you might not always be able to approach those in
your innermost circle because they are being affected too. Rather,
you must go outside the circle to someone who has a fresh perspec-
tive. You may nd that having an outside resource enables you to air
your worst fears and emotions.
Finding someone with whom you can share and work through
these emotions is a healthy and helpful response for a spouse of a dial-
ysis patient. And it will help you come to terms with your new role
and the resulting changes in your marriage. But when you seek an
outside resource, do so constructively with the help of someone who
is not a threat to your marriage. In Keiths case, he not only sought
out someone who could reafrm his virility, but he also sought out
a sounding board, someone he could conde in. Unfortunately his
choice of condante was destructive to his marriage. A better route

would be to proactively nd someone who has no other agenda than
to be helpful to you. This would include but not be limited to help-
ing you improve and strengthen your marriage in the face of dialysis.
Just as you may have to seek out help, you may also have to seek
out education. Margie found that when Daniel rst started dialysis
she also had a great deal to learn about the treatment. She encour-
aged the medical professionals to view her and her husband as a
team, keeping her in the loop. Over the years she has continuously
learned more about dialysis. According to her, you can never reach a
point where you know all there is to know. Education about dialysis
evolves and is ongoing. And in the case of Margie, dialysis has be-
come as much a part of her life, albeit in a very different way, as it is
a part of Daniels. How she plans her days, weeks, meals, and vaca-
tions has been altered to some extent by his dialysis. The more
knowledge she gathers about his treatment and disease, the more
condent she becomes in coping with her fears and feelings toward
the changes that have affected her life.
Lets Talk about Sex

Dialysis is life changing and it also can affect ones sexual life. Keith
didnt hold back when describing the difculties he and his wife were
facing with regard to sex. And as he surmised, they cannot be the only
ones suffering from these problems. There are many other dialysis pa-
tients and their spouses who are challenged by one partners sudden
lowered interest and sex drive. With dialysis patients there are two pos-
sible causes for this decline in sex drive. One is physical. The other is
psychological. Physically, dialysis and the buildup of uids and toxins
between sessions can be draining. A person may truly have less energy
than he or she had before the kidney failure. This is especially true on
the days that an individual undertakes dialysis. Certain medications for
high blood pressure or diabetes may also diminish sexual drive. Aside
from an overall diminished interest in sex, these physical burdens can
sometimes cause erectile dysfunction (ED) in men, the inability to

achieve an erection, or in women vaginal dryness, vaginal pain, and/or
an inability to achieve orgasm. Additionally PD patients may feel en-
cumbered by an abdomen lled with uid, which can make sex un-
comfortable and potentially result in medical complications. This is
one physical obstacle that can be resolved relatively easily by draining
uid before engaging in sex and lling shortly thereafter.
Psychologically, a dialysis patient may be contending with the
blues, which can diminish drive. One may feel less attractive as a
person and more self-conscious about physical appearance and the
location of the access. Like Keith, one may worry about how the ac-
cess looks and if the access can be disturbed or harmed during sex.
This increased self-consciousness can inhibit an individuals desire to
be sexually active. Alternatively, a spouse may suddenly be afraid to
touch or hurt a partners access. A spouse may also suffer increased
inhibitions by his or her sense that the dialysis patient is fragile and
may break. These psychological barriers are all common, real ob-
stacles that couples may face.
That is the bad news. Now for the good news: You do not have to
kiss your sex life good-bye. As a couple you can overcome these chal-
lenges. Neither a dialysis patient nor spouse need suffer in silence.
There are a number of crucial and basic steps to remedying the
situation:
Open up and talk to each other. If you arent in the habit of

discussing your sexual satisfaction with one another this might
be hard to do, but you have to find a way to have a nonaccusa-
tory or defensive dialogue about your needs. If this is a truly
uncomfortable topic of discussion for you, then you may need
to seek help from a professional counselor who can help initi-
ate the discussion. This is the critical step to finding mutual
satisfaction in the bedroom. Shyness around the topic must be
overcome.
Once youve determined what each person needs, nd a way to

compromise and meet halfway. In many relationships, even
those that arent contending with a chronic illness, there is often
a difference between sexual drives. The challenge is to try to nd
a compromise that both parties can live with. For example, if
one person would be content to have sex several times a week
while another would be content to have sex once a month, then
the middle ground might be to have sex once a week.
Redene sex. The key is to think about when you rst woke up
to be a sexual being. You need to think about what makes you
feel sexual. There are many ways to share intimacy with a partner
other than actual intercourse, but you have to be creative. For
example, alternative options may include kissing, cuddling, mas-
sage, mutual masturbation, or oral sex. To protect the access, dif-
ferent positions may need to be explored. A spouse should be
able to articulate what might be appealing and satisfying while at
the same time seeking options that wont be uncomfortable or
overly demanding on his or her partner.
Pursue medical options if need be. For men, ED, also known as
impotence, can be resolved regardless of its cause, most of the
time. To begin with, a comprehensive examination by a urologist
can help uncover the root cause of the problem. Depending on
his or her ndings, a urologist may recommend one of several
treatments that may include changing medications; couples
counseling; oral medications including sildenal (Viagra), var-
denil (Levitra), or tadalal (Cialis); hormone replacement ther-
apy by gel, patch, or injection intended to raise abnormally low
hormone levels; injectable medications into the penis that create
an erection, such as alprostadil, papaverine hydrochloride, or
phentolomine; vacuum device therapy, which maintains an erec-
tion through the use of vacuum pressure and bands; or as a last
resort, surgery and the use of a penile prosthesis. A urologist will
likely start with the least invasive treatment rst and recommend
more aggressive treatments should the initial ones fail.
Now to focus on medical options for women, a urologist or, in

some cases, a gynecologist can help a woman gure out what is caus-
ing the problem and how best to resolve it. The doctor may recom-
mend treatments such as changes in medications, in routine, or in
environment; couples counseling; over-the-counter lubricating jelly
such as KY Jelly or Replens designed to diminish vaginal dryness and
pain; kegel exercises to strengthen pelvic oor muscles; hormone re-
placement therapy via estrogen preparations; vibrating aids; EROS-
CVD, a device that places a suction cup on the clitoris to increase
arousal and lubrication; or vaginal dilation with a vibrator or tam-
pon multiple times daily. Again, most doctors will recommend the
least invasive treatment rst.
One nephrologist told us that hes had several male patients in-
quire about medications for their sexual drive. But he said he has
never had a female patient approach him about sexual problems or
pharmaceutical options. Furthermore this physician told us that
unless approached he never inquires about the health of his pa-
tients sex lives. When it comes to sex, he leaves it up to the patient
to approach him. Bottom line, if your husband or your wife truly
is waylaid by a lack of libido, he or she may want to explore med-
ical treatments. A patient should not be embarrassed or ashamed
to broach this topic with a doctor. And, it is not uncommon for
nephrologists to refer patients directly to urologists when dealing
with these issues.
In time, you will nd yourself much happier and more sexually
satised for having addressed these issues rather than sweeping them
under the bed. Your self-consciousness will diminish and you may
even nd that like many other PD or hemodialysis patients your
catheter or access becomes barely noticeable during sex. Instead it
becomes just another part of your body.
And Baby Makes Three

When discussing sex wed be remiss simply to address it as a pleasur-
able part of life without acknowledging that it is also a means of pro-
creation. If you are on dialysis or involved or married to someone on
dialysis, you may be wondering whether you will be able to have
children. Sometimes men on dialysis have a lower sperm count. If you
are planning to start a family you may want to have yours checked.
However, if you are a male on dialysis and you nd that everything is
in order anatomically speaking, there is no reason you could not im-
pregnate a woman and be a wonderful, loving father. This is also
true if you dont want kidsand everything is working in that
departmentso a word to the wise: take care! Your kidneys may
have stopped working, but for many men they have little impact on
the ability to parent. Yes, as a father on dialysis you might be a bear
sometimes, tired others, and youll have a rigorous schedule. But this
describes most dads we know. Hopefully youll have a lifetime to
compensate for these shortcomings, and your child wont know any
life that is different.
If you are a female on dialysis, bearing children may be a little
trickier but dont despair and dont immediately count conception
out. While youd automatically be considered a high-risk pregnancy,
if you are interested in having a child you should speak with your
doctor, get several opinions, and weigh your options carefully. As is
true with the decision to pursue a transplant, every woman is differ-
ent based on her particular set of health factors. We dont want to
provide false hope, but we have heard of several women who have
successfully conceived and delivered healthy babies while on dialysis.
Weve even spoken to one, Leila, and marveled at her tenacity.
If youve ever been pregnant you know it isnt always a walk in the
park, but pregnancy while on dialysis requires an entirely different
level of commitment. Leila was somewhat of a celebrity in her dialy-
sis clinic. Everyone had heard her story and knew what lengths shed
gone to in order to have a child. Before going on dialysis Leila al-

ready had one child. Soon after she began dialysis, she and her hus-
band tried to have another. Unfortunately she had two miscarriages.
The doctors informed her that shed likely never have any more chil-
dren and one physician even advised that she have her tubes tied as a
preventive measure of protecting a new kidney, if and when she re-
ceived a transplant. Leila chose not to follow this advice. As it turned
out, she was fortunate enough to receive a transplant, but after a few
years it failed.
Upon returning to dialysis her doctors told her that there was ab-
solutely no way she could conceive as a result of having taken the
immunosuppressant medications needed to protect her previous
transplanted kidney. Hearing this news, Leila and her husband
stopped using any type of contraception. Sure enough, to their great
surprise she quickly became pregnant.
For the duration of her pregnancy Leila dialyzed at her clinic
three hours a day, six days a week, taking a break only on Sundays.
By ensuring that she dialyzed every day, the doctors hoped to avoid a
toxic buildup in her bloodstream large enough to impact the fetus
negatively. Leila did deliver the baby prematurely, but his lungs had
developed sufciently that he was able to breathe on his own. Eight
years later she has a healthy, rambunctious boy who has her constantly
on the go. When asked if it was worth it, she replied wholeheartedly
without a doubt it was and she would do it again. And when asked if
dialysis got in the way of her ability to be a good parent, she re-
sponded, Not at all.
Helpful Ways to Be Supportive

Being able to make it through such a laborious pregnancy surely was
a team effort on the part of Leila and her husband. Her husband
likely sought out creative ways to show his love and support during
those long weeks and months leading up to the delivery. Although
most people on dialysis arent in the process of creating another life,
all people on dialysis are being stretched physically. Likewise, there

are many small gestures that a spouse can do, throughout the dura-
tion of dialysis, to be supportive and helpful to their loved one. We
share with you here a few of the loving gestures weve discovered over
the years.
1. Learn about the dialysis diet and how to shop or even cook for
the diet. Adapting recipes and nding creative ways to concoct
food that your loved one will enjoy is one of the most loving acts
of kindness that you can express.
2. Inquire about the dialysis clinic and the people there. Going to
dialysis is like going to work. It is a whole world lled with charac-
ters and stories. Showing interest in where your loved one spends a
great deal of his or her time is a nice way of expressing interest.
3. Give gifts that show you care. Go out and buy small drinking
glasses and replace the massive cups you have in your kitchen
cabinet. Find a pretty jar in which your spouse can keep phos-
phorous binders. In Margies case she found two jars one marked
with an X the other with an O. Other thoughtful gifts are a cozy
washable blanket that the person can take to the clinic, a beauti-
ful pill box for some of the medications, or an MP3 player for
keeping the individual musically equipped while dialyzing.
4. Visit the person at dialysis. You certainly dont need to go every
time or for entire sessions. But popping in on occasion, espe-
cially as a surprise, can be like a ray of sunshine.
5. If your loved one has reached a signicant dialysis milestone ac-
knowledge it and recognize the persons courage and persever-
ance. For example, to mark the ve-year anniversary of Daniels
start of dialysis, Margie asked all of his siblings and children to
write and send cards. She surprised him with the cards and a gift
from the whole familya paperweight inscribed with the
phrase, You are a star.
6. Determine whether there is a time when a little extra tender lov-

ing care can go a long way. For example, when Daniel returns
from dialysis in the evenings Margie makes a concerted effort to
be home and to have a good dinner waiting. This schedule isnt
applicable to many dialysis patients but it illustrates how Margie
tries to provide a little extra comfort when Daniel needs it most.
7. Try to give as much ownership of health and health care as pos-
sible to your spouse. As weve said earlier in the book, patients
often do better when they feel some semblance of control over
their care. For example, Margie used to put lidocaine on Daniels
access before every dialysis session. Then she realized that he was
perfectly capable and should be doing it himself. Sometimes it is
easy to take the caregiving too far. Dont enable your spouse to
become more of a patient than necessary.
8. Feel free to express benign disinterest. By this we mean, you can
listen to your partner complain about dialysis but do it pas-
sively, almost as if you are listening with one ear. The goal is to
listen but not add fuel to their complaints. Your loved one may
not realize it, but this is often the most emotionally helpful
response.
9. If you need to travel on your own for business or pleasure, show
you care from afar. Call after dialysis to see how the person is
feeling. Perhaps leave a card or a gift under his or her pillow as a
surprise. If you are in the habit of cooking for your spouse, make
some dialysis-friendly meals in advance. Bring a gift back with
you.
Taking Care of the Caregiver

Showing love and caring for your partner is important, but equally
important is taking care of yourself and creating boundaries. Weve
already established that whether or not you consider yourself a con-
ventional caregiver, you are one. And the extent of your caregiving
responsibilities will vary depending on whether your spouse is con-

tending with complications, additional diseases, aging, or other issues.
It is important to realize that you are at a heightened risk to become
burned out, tired, sick, or depressed yourself.
To be able to care for your spouse, you simply cannot ignore your
needs. As Margie says, You are running a marathon, not a sprint. In
order to make it to the nish line, you have to pace yourself. First, de-
termine what you need to do to recharge your batteries while away
from your spouse from time to time. Rejuvenating activities may in-
clude massages, walks, visits to a salon, going out with friends, going
to the movies, exercising, taking a mini-solo vacation, or even a longer
vacation if time permits. Whatever your pleasure, make sure to nd
the time and to do it without your spouse. You will be better off for it,
better able to show support, and better able to put up with your hus-
band or wifes not so good days.
As Keith noted, on those bad days a caregiver often serves as a bit
of a punching bag. Sometimes the spouse of a dialysis patient, by
virtue of proximity, is the recipient of some of the verbal blows, sulk-
iness, and crabbiness that a patient cant help feeling from time to
time. This is not a lot of fun, especially when you feel like youve
done nothing to deserve this ire. But if you are taking care of your-
self youll be less likely to let it bother you. The moods will pass, and
remember what Margie says with a smile, Go with the ow even in
a sewer. Meaning that even during the cruddiest times of dialysis
you just have to move with it rather than ght it. Or if that saying
doesnt inspire you then her alternative mantra is There is no de-
fense against kindness. Even if your signicant other is treating you
poorly for no apparent reason (other than the fact that he or she is
completely fed up with dialysis and you happen to be the only one
within shouting distance), if you treat your spouse kindly, your
kindness will be like a salve that soothes his or her anger. Eventually
the person wont be able to help reciprocating. However, this ability
to go with the ow and give kindness even where there is initially
none in return hinges on your ability to constantly build and rebuild

yourself back up again so that your defenses are strong.
The Second Wave: Those Who are One

Step Removed
The majority of people within a patients world are far more im-
mune to the highs and lows of dialysis, and they will fall into the cat-
egory of being one step removed. For example, this may include
adult children, good friends, or siblingsjust about anyone who is
close to the patient but who does not live under the same roof. In re-
ality the majority of people in this group generally show little inter-
est at all in dialysis or a patients life on dialysis. People live busy,
stressful lives and often just ask how the patient is and go on to other
topics. Some are afraid to ask about dialysis. If they do ask additional
questions they are often misinformed or ignorant about the treat-
ment. Sometimes their concerns or questions are tinged with an air
of surprise that the patient is still alive and able to get around so well.
While it may sound harsh, the truth is that most people in this
group tend to be fairly clueless and rarely make an effort to educate
themselves. Sometimes this may be frustrating to the patient or
those on the front lines, but it is a reality of life. Perhaps, for those
who know very little about kidney failure and who take the time to
read this book, they will arrive at a new level of empathy and inter-
est. If you nd yourself within this group of individuals and, after
reading, wish to be even more in tune with your friend or loved ones
life, we have a few recommendations of gestures that would likely be
very well received and much appreciated. If there were such a thing
as dialysis patient etiquette it would go something like this:
1. First, go and visit your friend, sibling, parent, or other loved one
at dialysis. Dont be scared or deterred by the tubes and needles.
Remember that many dialysis patients are able to walk out of the
clinic and lead very good lives! A visit may be uncomfortable at
rst, but it will be very illuminating. More important, it will en-
hance the relationship between yourself and the dialysis patient.
All three of Daniels children and his two oldest grandchildren
have, at different times, visited him at dialysis. While some were
nervous at rst, Daniel asserts that each visit was an eye-opening
experience that enabled the visitor to gain a more realistic per-
spective, and as a result be more empathetic.
2. Before you visit, ask permission. Of course, there is a ne line
between empathy and pity. Both Daniel and Margie acknowl-
edge that they are proud and do not want to be pitied, or viewed
as having or being less than anyone else. For this very reason,
some people may be hesitant to allow a person other than a care-
giver to see them dialyzing. As an example, we met one young
woman who refused to allow her boyfriend of six months to
visit her at the clinic. She didnt want him to picture her in that
light. She wanted him to view her like he would view anyone
else.
As an aside, we feel she was entitled to deny her boyfriends request
to visit until she felt the relationship was at an appropriate stage of in-
timacy and comfort. But we also believe that if and when she was to
become condent enough in the strength of the relationship, allowing
him to visit her while dialyzing would only enhance their bond. He
would be able to learn about an important but not completely den-
ing facet of her life. And as a result he would have a window into her
vulnerability and courage. In theory, if her boyfriend was a keeper,
these insights would only draw him closer.
3. Dont just visit the patient once, never to return. For many pa-
tients, dialysis is a big part of their lives for many years. If that
is the case, you may want to pop in now and again. At the very
least visit once a year. A short visit requires minimal effort on
your part, but will likely leave a large impression on the person
you are visiting. You dont need to stay for an entire treatment,
but even a half an hour will mean a great deal to the patient
and will be a considerate expression of your ongoing love and
concern.
4. Occasionally ask the person on dialysis about his or her treat-
ment. Asking patients about the clinic and the people there is a
gesture of genuine interest in their life. After all, they do spend a
lot of time there. Similarly, it is nice to ask dialysis patients from
time to time how they feel or how a session went. While they
dont want to be completely dened by dialysis, they dont want
it to be ignored either. By asking, you are acknowledging a big
part of their lives.
5. Request a complete, written list of dietary restrictions. When a
person on dialysis comes to your home, make an effort to serve
or have foods on hand that are good for him or her to eat. Try to
steer clear of cooking unhealthy options, or at the very least pro-
vide an alternative. If you understand the diet, you will be in a
position to be more supportive and less likely to inadvertently
sabotage a persons attempts to comply with the diet.
6. Be understanding that dialysis trumps any other activity. If you
want a dialysis patient to be present at a certain event, you must
plan the affair around their dialysis schedule. Daniel and Margie
have taught their kids that every day is special and no day is spe-
cial; in other words, all activities and events must be planned
around Daniels schedule. If Daniel is vacationing with his fam-
ily and has to dialyze on New Years Eve, then the family can cel-
ebrate New Years the day before. Eventually one becomes so
accustomed to accommodating the ebb and ow of dialysis that
one barely remembers life before dialysis.
7. Try to assist the caregiver if the need arises. During times of ad-
ditional stress, if medical complications arise, check in on both
the patient and the caregiver. When the caregiver is taking a

well-deserved break, help out by calling or visiting the dialysis
patient more frequently.
8. Take the time to express appreciation and gratitude to the care-
giver for all that he or she does to help the patientsomeone
who positively inuences and impacts your lifekeep on keep-
ing on.
If you are among the circle of relatives and friends of a dialysis pa-
tient and are able to take these suggestions to heart, you will nd
yourself much more enlightened about and comfortable with dialy-
sis and all that it involves. Most important, by pursuing these sug-
gestions, you will make it abundantly clear to the person on dialysis
that you care about what he or she is going through.
The Third Wave: Acquaintances

and Strangers
Of course an improved understanding of dialysis can enhance an al-

ready cohesive bond between friends or family. But what about peo-
ple that we arent close to in the least? Do they really need to know
that we or someone we love is on dialysis? Probably not. Every en-
counter depends on the context. If you are visiting the emergency
room and are meeting a nurse for the rst time, then, yes, please do
tell him or her that you are on dialysis. But if you are introduced to
someone at a barbecue, then there is no need to talk about your
health. There are so many other interesting things to talk about, and
if avoidable, it would be nice not to be referred to as so and so . . .
hes (or shes) on dialysis. This goes for caregivers too. You dont
need to be known as so and so . . . his wife (or her husband) is on
dialysis. Stand out on your own merits and interests. In time, after
someone has gotten to know you a bit better then you can let them
know about dialysis, but rst let them get to know the other aspects
of your life.
As an example, we mentioned that Margie occasionally takes trips
on her own. She started out by telling fellow vacationers about
Daniels dialysis and why she was vacationing alone, but her closest
friend cautioned her against this. For one, her friend said, you
need a complete break from the world of dialysis. And for two, there
is no reason to go into it. Now Margie chooses carefully if and
when she tells someone during the course of the trip. She only men-
tions it if she feels it is completely appropriate. When asked how
people react she says, Most frequently they are kind of fascinated
and are surprised that Im so relaxed about dialysis. Most people
whom she condes in usually dont know much about dialysis. If
they express further interest, she considers it an opportunity to teach
them a little about renal failure and dialysis.
On the other hand, some people arent nearly as receptive. Dial-
ysis patients may threaten some individuals who are afraid of ill-
ness and these people will be more likely to shy away. Do not
pursue them. You will only hurt yourself if you pursue them. Some
people are just like that. You cannot change them nor should you
try to. If you are tempted to, stop and ask yourself, What do you
get when you continuously hit your head against a wall? A
headache! Really its not worth the effort. Margie and Daniel both
say they have learned not to take these rebuffs to heart. They sim-
ply think of how blessed they are to have wonderful friends, and
then they move on.
To return to our previous analogy of the rock splashing down into

water, weve now addressed three of the waves that ripple from
the center outward: the caregiver; those who are one step removed;
and last, acquaintances and strangers. Regardless of which ring you
fall into, or if you are the center of the commotion yourself, the
suggestions in this chapter are intended to help you brave the wake of
dialysis and the disturbance that it may cause to your relationships.
Human beings are remarkably exible, and like water settling around
a rock, most relationships eventually adapt to the unwelcome imposi-
tion of dialysis.
Eight
Work and Financial

Implications of Being
on Dialysis
n most social situations when we meet a new person, one of

Ithe rst questions we ask one another is What do you do? For
most people what you do is considered to be a big part of who you
are. When someone begins dialysis, one of the rst concerns usually
is What do I do now ? And in keeping with the logic that what we
do is such an integral part of our identity, it is a safe assumption that
wondering What do I do now? is really just another way of won-
dering Who will I be now?
The thought of having to adopt a new identity, one that includes
the response, I do dialysis, or I do disability isnt really a self-portrait
that many of us would be comfortable with or take pride in. This
sudden loss of an answer to what had previously been a very straight-
forward question can be very challenging. For many people new to
dialysis the idea of who they were and where the future was going to
take them has unexpectedly changed.
In addition to these weighty questions of identity come practical
concerns about nances. Soon after what do I do now, the ques-
tions of how will I survive, or in the case of a breadwinner, how
will my family survive if I cant work, almost surely follow. Dialysis
patients may wonder how they will pay the bills or if they will be
Work and Financial Implications of Dialysis 161
able maintain the lifestyle that theyve built based on their previous
level of earnings. They may worry if they will be able to afford to
send their kids to college, pay for the childrens braces, or buy a
home.
Of course, all of these questions may invoke worry and anxiety. If
they are racing through your brain, dont panic. As we mentioned at
the beginning of the book, one of the biggest societal misperceptions
surrounding dialysis is that a person on dialysis is no longer able to
work or study. As one renal care social worker said, I have known
many people who assume that once they require dialysis they can no
longer work. I often felt that it was my responsibility to challenge
that assumption.
This particular social worker had been working with dialysis pa-
tients and transplants recipients for over two decades. During that
time she had seen people who were battling kidney disease work in a
variety of jobs and elds. She saw everyone from dishwashers, to
landscapers, to construction laborers, to factory workers, to business
professionals, to doctors who worked and dialyzed. She told us,
The more time you spend at home sitting in your house, the worse
you feel. The more depressed you are, the less energy you have. This
is the reason that the articles Ive read over the years strongly support
the idea that people who continue to live their lives as close as possi-
ble to life before dialysis do better. Unfortunately, there are certainly
people who cant continue to work and I help them through that pro-
cess. But when people start dialysis, I try to set up the expectation
that they will work and if they cant then well gure it out. At least I
want them to see that somebody expects them to work.
It may take time, to sort out the realities of what one can or can-
not do while on dialysis, but in the interim our advice would be to
try not to make any premature, large life changes immediately after
starting dialysis. Take a month off if you have to, but plan on return-
ing to work. For some people that may mean returning full-time;
for others that may mean working part-time, volunteering, or being
active in church or synagogue. Time will tell, but rst allow the dial-
ysis a grace period to take effect and allow yourself time to begin
feeling better.
When rst starting dialysis you may feel so sick and so debilitated
that it may be very hard to imagine ever feeling well enough again to
hold down a job. However, how you feel initially on dialysis is rarely
representative of how you will feel in the long run. Or alternatively
you may be quick to think, if my life will be shortened shouldnt
I enjoy every last minute, and is work really how I want to spend my
time? But, as weve said many people live decades on dialysis. You do
not yet know what the future holds so dont be so quick to assume
the worst. Give yourself the time to be able to separate the forest
from the trees before prematurely starting disability paperwork.
This is not to say, that the task of working and juggling dialysis is
easy. Many times it is not. In this chapter we will discuss a range of
issues surrounding work and nances that arise when someone is on
dialysis. We will discuss a host of topics such as the type of informa-
tion you should and should not divulge during a job interview, as
well as information about health insurance programs, protective fed-
eral laws for people with disabilities, nancial assistance programs,
and exible work schedules. Our aim is to help you gain a much
greater understanding of how to make work work for you.
Marias Story, a Hemodialysis

One young lady whom Susan interviewed was successfully doing just
that. Maria, a young twenty-year-old Hispanic woman was in the
midst of dialyzing at 5:30 a.m. when she cheerfully greeted Susan
from her chair. Susan, unaccustomed to such an early work schedule,
nursed her extra-strength coffee, appropriately named Fog Lifter, as
she pulled up a stool and sat beside Maria and listened as her story
unfolded. Maria spoke of how four years prior, as a sophomore in

high school, she went into renal failure. Before being diagnosed, she
complained of constantly being tired, which her mother simply at-
tributed to, typical teenage laziness. But when Maria began cough-
ing, her mother grew concerned and took her to a local clinic. The
paleness of Marias skin, the bags under her eyes, and the whiteness of
her ngernails were all telltale signs of anemia. To conrm his suspi-
cions, the doctor drew blood and a few days later Marias mother re-
ceived a call asking her to bring her daughter to the hospital right
away. Less than a month later, Maria began dialysis. Everything hap-
pened so fast, Maria said, It really didnt sink in for a long time. As
Maria talked about learning to cope with her illness, nishing high
school while on dialysis, and deciding what to do next, Susan gleaned
a little of the situational and motivational challenges associated with
workingor in Marias case, studyingwhile on dialysis.
When you rst began dialysis how did you manage to continue
school?
I started dialysis my sophomore year. I managed to nish my
rst semester but then second semester and my junior year I was
home schooled. My senior year I returned to the high school. That
year, I would go to school and immediately after school I would
come to dialysis. When I was home schooled I dialyzed in the morn-
ing and then in the afternoon I would have school.
Did you have an active social life through high school?
I had my close friends, but when I attended school at home, it
wasnt the same. When I was home schooled I didnt do much with
my friends. When I returned I was more involved and I think I
would have enjoyed a better social life if Id stayed at the high
school.
Why did you or your parents decide to home school?
After dialysis I got tired and I just wanted to go to sleep. Initially
I tried to have dialysis, skip rst period, and then arrive at school for
second period. But I found myself skipping several periods in the
morning because I just wanted to go home and go to sleep. The

schedule was messing with my grades so my mother thought it
would be better for me. I didnt want to leave, but it was better.
Did you consider changing your dialysis schedule to the evenings?
They didnt offer a late schedule at my clinic at that time. I
would have had to switch clinics, which I didnt want to do.
Now that you have graduated what are you doing?
Im studying to be a pastry chef. Im enrolled in a one-year pro-
gram at the Culinary Academy. I wasnt sure initially if I wanted to
do culinary or pastry, but I love decorating wedding cakes.
What is your current dialysis and school schedule?
I dialyze from ve a.m. to nine a.m. I return home to rest and
then I go to school from ve p.m. to ten p.m. The schedule works
well for me.
What do you think differentiates people who do well on dialysis ver-
sus people who become stuck in a rut?
I guess the main difference is whether you can just deal with it.
The people who can say, Yeah I do dialysis but I do other stuff too,
they seem to do well. And just because you are on dialysis doesnt
mean you have to stay put. We have to complete an externship for
three months before we graduate. Im thinking about doing mine in
Paris.
Are there any benets to being on dialysis?
Yes. You can get nancial assistance for school. There are places
you can get grants. There are benets that exist specically for those
who are disabled.
What has been the biggest challenge for you while on dialysis?
I think what I mentioned before, learning to deal and adapt to
the situation. At rst when I went on dialysis I thought, Oh, Im not
going to be able to do what I want to do. In fact, after I graduated
from high school I should have started culinary school right away.
But I didnt. I dont know why. I would just go home after dialysis
and that was my day. I would do that every day and every day that
was it. I didnt do anything. Eventually I just got tired and thought
What am I doing? Life was just passing me by. An entire year went
by and I thought, What am I doing here living at home with my
mom? So I enrolled in school because eventually I want to be living
on my own and doing stuff with my life.
Maria went on to tell Susan about her boyfriend, going to the

movies, spending time with her grandfather. She explained that she
was awaiting a transplant but had been on the list for only a year.
Aside from being on dialysis, Maria struck Susan as a very poised,
normal, twenty-year-old woman who had managed to work around
the scheduling difculties and physical languor of dialysis. Maria
was a perfect example of the countless numbers of dialysis patients
who, despite the physical challenges of the treatment, manage to cre-
atively carve out their professional path. Rather than letting her in-
ertia settle in permanently, Maria discovered a vocation she thought
would suit her talents, tapped into the nancial resources that were
available to her, and pursued her professional interests. Like any
other twenty-year-old, Marias future was lled with possibilities.
Practicalities of Working and

Studying while on Dialysis
As we saw with Maria, her school life did shift dramatically after she
began dialysis. At rst she tried to continue going to school as she
had normally done, with the exception of skipping rst period. But
because dialysis sapped her energy she was unable to show up to
school on time and maintain her grades. Home schooling wasnt the
ideal option, but it enabled her to continue her studies and get the
rest she needed. If only her dialysis center had offered an afternoon
shift, she would have been able to go to school in the morning and
dialyze after.
Unfortunately dialysis centers dont often have the schedules that

best mesh with an individuals work or class needs. And, as was the
case with Maria, many people often must mold their work or school
schedules around the schedule mandated by their dialysis center as
opposed to the other way around. Orin the case of peritoneal dial-
ysis, which offers greater exibility in terms of schedulinga patient
may need to carve out time and space during the workday to per-
form a manual exchange. Unlike many people starting dialysis, Maria
had yet to join the workforce. But many folks who have to go on
dialysis are already employed. What if they must suddenly make some
changes to accommodate their dialysis schedule? What will their em-
ployer say? What will their employer do?
Know Your Rights

Individuals on dialysis are considered to be individuals with disabili-
ties as protected by the Americans with Disabilities Act (ADA.) This
means that you have certain rights that your employer must honor.
As stated in the U.S. Department of Justices Guide to Disability
Rights Laws, this act Requires employers with 15 employees or more
to provide qualied individuals with disabilities an equal opportunity
to benet from the full range of equal-employment opportunities
available to others. For example, it prohibits discrimination in recruit-
ment, hiring, promotions, training, pay, social activities and other
privileges of employment. It restricts questions that can be asked
about an applicants disability before a job offer is made, and it re-
quires that employers make reasonable accommodation to the known
physical or mental limitations of otherwise qualied individuals with
disabilities, unless it results in undue hardship.1 Before approaching
your boss, at the very least you know legislation exists to protect you
and others like you. You are entitled to make certain requests that will
enable you to both work and dialyze. In general, you should feel more
condent in your rights.
Many employers when approached about creative scheduling or
nding space for a peritoneal exchange in the middle of the day are
willing to accommodate these requests. Occasionally though, an em-
ployer may not be so receptive. If need be, you, your social worker,
or your physician may need to draft a letter referencing the ADA. As
one social worker said, I have used the ADA as a threat, although
Ive not had to get involved with recruiting lawyers to advocate for
patients. Any time you reference federal law it does raise an em-
ployers awareness.
We spoke with a patient who found himself in just such a situa-
tion. When he rst started dialysis he was working for the city col-
lecting recyclables. This patients nephrologist felt that the job would
be too strenuous for him and recommended he try to switch to an al-
ternative position working within the same municipal department.
So this gentleman approached his supervisor and asked for a reason-
able accommodation. The supervisor refused and suggested instead
that the employee resign and go on disability. The gentleman con-
fronted his supervisor saying that he thought he was being unfairly
discriminated against. The supervisor retorted that he didnt really
care what the employee thought. So, knowing his rights, this gentle-
man led a complaint with his states commission on human rights.
Three days later he received a call from his employer offering him a
position in the customer service department where he went on to work
for several years. And as a result, the complaint was dismissed.
Unfortunately weve also been told that there are ways for em-
ployers to skirt the rules set forth by the ADA. Rather than refusing
certain requests, some managers will accommodate them. But they
will intentionally make the work environment hostile and unduly
challenging until ultimately an employee feels that the only recourse
is to resign and go on disability. We sincerely hope that you do not
nd yourself in an adversarial position with your manager or em-
ployer. However, if you feel that an employer is directly violating
your rights as dened by the ADA, you should strongly consider
pursuing legal recourse.
Know Your Rights as a Family Member

What if your spouse, parent, or child goes on dialysis and you must
help take care of him or her? What are your rights then? The U.S.
Department of Labors synopsis of the Family and Medical Leave
Act (FMLA) states that covered employers (essentially employers
with fty employees or more for twenty weeks out of the year or
public employers with any number of employees) must grant an el-
igible employee up to a total of 12 work weeks unpaid leave during
any 12 month period for one or more of the following reasons,2
which include, To care for an immediate family member (spouse,
child, or parent) with a serious health condition.
Most people think of FMLA in terms of having an ill or dying rel-
ative and needing to take two months off. What many people do not
realize is that, provided you are an eligible employee, you can also
use FMLA intermittently. For example, if you have to take a family
member to a doctor appointment once a week you can use the FMLA
time for those weekly visits and protect your job while still caring for
your family member. Your employer is not required to pay you for
this time off and every employer is different in terms of how much
of the twelve weeks they will provide as paid leave versus unpaid
leave. But at the very least, you will know that your job is protected
under the law.
To Tell or Not to Tell, That Is the Question

When Maria ultimately graduates from culinary school and begins
interviewing for positions as pastry chef, what must she tell a
prospective employer during the interview process? Does she need to
explain that she is on dialysis? The only question that an employer
may ask about your medical condition during the interviewing pro-
cess is if there is anything about your health that prevents you from
doing the job. As one social worker said, I use the example of some-
body who has a bad back and is interviewing to work on a loading
dock for UPS. In that case the interviewee must disclose that infor-
mation. She went on to explain that anything that does not prevent
you from doing the job does not have to be disclosed until after an
offer has been made. At that point, some jobs require a brief physical
or a drug urine test. This would of course bring your renal failure to
light. If you no longer make urine, ask your physician to provide a
letter explaining your kidney failure and willingness to provide a
blood or hair sample instead. Under the ADA a prospective em-
ployer should be receptive to this alternative suggestion.
But remember, early in the interviewing process you need not
disclose anything. As a litmus test ask yourself, Will leaving my
job half an hour early to get to dialysis prevent me from doing the
job and doing it well? As an alternative, could arriving at work ear-
lier in the day, or working from home later at night still enable me
to do the job and do it well? If the answers to these respective
questions are no and yes, then you need not say anything while
interviewing.
Sometimes people will be interviewing for a position and will
want to know up front if the employer will be willing to work
around a hemodialysis schedule or to accommodate a peritoneal ex-
change. As we mentioned, in-center hemodialysis schedules are un-
fortunately not set up for the convenience of patients. In fact, most
of the dialysis schedules interfere with regular work day hours. Usu-
ally a patient cant complete the earliest session (typically ending
around nine a.m.) in time to arrive before the work day begins nor
can a patient start the last session (typically beginning around four
or ve p.m.) after the ofcial work day has ended.
While interviewing, a person on dialysis may hope that the
employer will display a willingness to nd a work-around to this
schedule. Interviewees may also be uncomfortable withholding infor-
mation that, while it wont prevent them from doing the job, may
start them out on the wrong foot with their employer. Therefore they
may feel compelled (even though by law it is not required) during the
interview process to reveal that they must dialyze and may require
exible scheduling. But here is another way that employers can get
around the ADA. Upon hearing about the dialysis before extending
an offer, they may then choose not to hire the person on dialysis. If
smart, they certainly wont say that they are choosing not to hire this
person because of dialysis although in many cases that may be one of
the reasons if not the reason. They will have another excuse. Bottom
line: if you divulge that you are on dialysis early in the process you are
taking a gamble on the integrity and open-mindedness of the em-
ployer, and in some cases, it may not pay off. So think very carefully
about what you choose to share with a potential employer and when
you choose to share it.
Flexible Work Schedules

Now lets say you have taken a job or are already working and now
nd yourself on dialysis. How might you be able to work around
some of the scheduling hurdles of dialysis? First, if you are doing
peritoneal dialysis, likely you will have some added exibility as to
when you must perform a manual exchange. This is one of the
perks of peritoneal dialysis; it is not quite as rigid as having to be at
a hemodialysis center at a specic time three times weekly. Like a
newly nursing mother who returns to the workplace and must
pump her breasts throughout the day in order to maintain her milk
supply, you will require a quiet, clean, private place where you can
perform an exchange. And like a new mom, youll probably nd
your lunch hour cut short in exchange for time spent taking care of
businessyour business, that is. Again under the ADA your em-
ployer must make a good faith effort to nd a place where you can
perform an exchange. And most will. They may not always be
happy to do so, but more often than not they will be accommodat-
ing. And if they arent, remember you, your physician, or even an
attorney (if it comes to that) may want to remind them of your
rights.
If you are on in-center hemodialysis, you may need to be a little

more creative with your time. Some patients will arrange with their
employer to put in extra hours either at the beginning or end of the
workday to compensate for a late arrival or early departure. Other
patients may commit to working extra hours in the evenings or
even while dialyzing by making themselves available via cell phone
for work conversations and by working via a laptop computer at the
center. As an example, teachers or professors will grade papers or
work on lesson plans while dialyzing. One physician on dialysis re-
turned all his patients calls and completed his dictation, allowing
him to have time to spend with his wife when the dialysis session
was over. Other patients may work out a part-time agreement to
put in a ten-hour workday Monday, Wednesday, and Friday. Then
they take Tuesdays and Thursdays off so that they can dialyze on
those days in addition to Saturday. We met with one gentleman
who had been working at an insurance company for only six
months when he suddenly became sick and had to go on dialysis.
His manager allowed him to move to this three days a week part-
time schedule despite his short tenure at the company. By switching
to this schedule, the gentleman was able to keep his benets while
having time to dialyze on Tuesdays, Thursdays, and Saturdays. As
one can imagine, he was eternally grateful to his employer for being
so exible.
If you are not sure how best to approach your employer or what
type of plan might be well received, rst meet with your social worker
to strategize. Social workers will have seen many different employer/
employee solutions and may be able to suggest a mutually benecial
proposal that you would not have thought of on your own.
Best Odds Companies

Now lets imagine a young woman on dialysis, such as Maria, but
instead of attending culinary school she is pursuing a degree in
business management. Once she has completed her degree, how
can she determine which companies may have the best benefits
and be the most accommodating in terms of her dialysis? As far
as we know, a list of Best companies to work for when dealing
with a chronic illness does not exist. However, the seasoned social
worker we met earlier told us she typically encourages patients to
look at larger companies. Why? First, small businesses typically
cant afford the health insurance premiums associated with chroni-
cally ill employees whereas a large business with hundreds or even
thousands of employees is generally impacted less by a handful of
chronically ill employees. While their premiums do go up, they are
better able to manage their overall costs due to economies of scale.
For this same reason, they also tend to have better insurance pack-
ages. So not only would you be more likely to get hired by a large
employer, but you would also be more likely to have better health
care benefits.
As for nding an employer that will be receptive to a exible
schedule provided you get your work done, there are three lists you
may want to reference: Working Mother magazines 100 Best Com-
panies, Fortune magazines 100 Best Companies to work for in
America, and the Fortune 500. While you may have no interest in
maternity leave or on-site daycare, you can be assured that a com-
pany will not make it onto the Working Mothers list if it is opposed
to exible work arrangements. Hence, this is why you, a person po-
tentially seeking exibility, would also nd interest in such a list. As
for the Best Companies to Work for in America, each company may
have a variety of reasons for making it onto the list and not all may
pertain to your needs. But often Fortune will include brief explana-
tions as to why a company has been chosen and again you can look
for key words such as telecommuting, exible schedules, job-
sharing, and the like. If you cannot nd companies on either of
these lists that have operations in your home town or nearby, check
out Fortune 500. Of course, just because a company is big doesnt
mean that it is exible. But the Fortune 500 lists the largest 500
companies in the United States and will help you to at least identify
whether there are any very large employers in your area. Last, when
seeking open-minded employers you may want to check with your
town or city to nd out whether there is an ofce of people with
disabilities and if so, if they ever hold job fairs. If in fact they do, see
if you can get a list of companies that have attended in the past.
Odds are that those companies will be receptive and supportive of
your dialysis requirements.
Standing Out from the Crowd versus Fitting In

Most of us want to differentiate ourselves in the workplace based on
our work ethic, performance, and talents. In these cases, being seen as
different from the rest is often a positive. However, being perceived
as different because you are on dialysis is not a point of differentia-
tion that many people are comfortable with. Like the rest of the
population, co-workers can sometimes be very misinformed and
sometimes even scared of people on dialysis. Outrageous as it sounds,
you may run across a co-worker (although they may be afraid to say it
out loud or to you directly) who is most certainly wondering, Is dial-
ysis contagious?
This begs the question of whether you should share your med-
ical situation with your colleagues. There really is no easy answer
to this question and the quickest response would be, it depends.
First of all, do your colleagues need to know? Sometimes because of
your dialysis schedule you may need to do a little explaining in or-
der to avoid unnecessary resentment as to why you are receiving
what they may feel is preferential treatment. Or, if you are on a
transplant list you may need your colleagues to be informed of
certain projects in case you have to take a sudden leave and unex-
pectedly put them in charge. However, in some situations your co-
workers really may not need to know about dialysis provided you
are getting your work done and they are marginally or not at all
affected.
Second, you may want to contemplate whether you want your

colleagues to know about your renal failure and for what reasons.
If it is your first day on the job and you find yourself telling any-
one and everyone that you are on dialysis, stop and reflect about
why you want this attention. However, if over time, you form a
close camaraderie with specific co-workers you may feel that your
renal failure is a part of you that you are comfortable sharing.
While dialysis does not define you, it is after all a part of your
identity.
Most important, if youve already proven yourself to be a capable
worker and colleague, sharing the fact that you are on dialysis can be
the best possible way to shatter many of the misperceptions that are
so prevalent among friends and co-workers. Some of the reasons
these old-fashioned stereotypes around dialysis and dialysis patients
persist are because dialysis patients are not always visible. The more
people who are on dialysis and are doing well choose to make it
known that they are on dialysis, the more likely it is that these per-
ceptions will change. So you do have an opportunity to make a pos-
itive difference, inuence members of our society, and ascribe a more
accurate face to what someone on dialysis looks like. This is a lofty
responsibility that certain individuals are not comfortable with.
Whether you want this responsibility to teach others is entirely your
choice.
Last, you will likely find yourself in a number of work situations
that you might not be able to fully participate in such as pizza par-
ties, ice cream socials, or even happy hoursnone of which are
particularly healthy options for a person on dialysis. You may think,
well, Im better off just skipping the event entirely than having to
hear people say, Hey youre thin; how come you dont want any
pizza? or Youve barely touched your drink and were already on
our third round; dont you like your beer? Having a fail-safe an-
swer that you can fall back on while not having to go into a ton of
detail will make these situations far less stressful to deal with. And
it will keep you from feeling like the perpetual odd man or woman
out. Participating in as many things you can that you find enjoy-
able is critical to your health. So if you enjoy hanging out with
your colleagues dont skip these events. Instead, when and if a
question comes up, just pull out your stock answer such as, Im
on a special diet for health reasons. Most people will have enough
common sense not to press further but if they do you can always
say, Its really not worth going into right now, and then swiftly
change the subject to the latest in sports news or office politics.
That will nicely but firmly indicate that you dont want to discuss
it further.
The Alternative: Disability or Retirement

As we said earlier, some people really cannot work after going on
dialysis. For example, we met the wife of a patient had worked for
years as a cross-country truck driver. After going on dialysis he sim-
ply could not wed his demanding driving schedule to his equally
demanding dialysis schedule. His best alternative at the time was to
apply for disability. This can be very tough on a person emotionally
and nancially, but people are remarkably resilient and eventually
patients do adjust. And just because you do not go to a job every
day does not mean you cant volunteer or be involved in your com-
munity. There are so many opportunities to give back, even when
on dialysis, that going on disability doesnt necessarily mean resign-
ing yourself to sitting on the couch all day. As one woman on dialy-
sis told us, I hate to see people just go home and stay around the
house all day. That will kill you. You need to get a life and get in-
volved. I work at food banks and help senior citizens who are
housebound. I take them to their doctors appointments, help them
around the house, take them shopping, sit and talk with them. Do
like I do. Go help someone who is really sick. Or if you dont want
to do that, volunteer at a library. To identify volunteer opportuni-
ties that meet your needs you can start by checking the yellow pages
and contacting nonprot organizations in your area. Or if you have

access to the web, a few excellent sites with volunteer opportunities
are listed below:
www.volunteermatch.org
www.idealist.org
www.volunteer.gov
Occasionally individuals will go on disability for a short time and
then return to the workforce at a later date. However, once a person
makes the nancial transition to a less prosperous lifestyle it can be
difcult to re-motivate and return. Although not technically on dis-
ability at the time, Maria was an example of someone who returned
to the workforce after living as if she were on disability for a year.
However, it took a signicant amount of discontent to motivate her.
In addition, she was a twenty-year-old with potentially more energy
than a forty-year-old or sixty-year-old. If you go on disability and
later decide to rejoin the workforce, you will need to justify the gap in
your work history, which can be tricky and may make nding work a
challenge. In some cases a decision to go on disability is clear. But in
the event your case is not so clear-cutfor all these reasonsthink
very carefully before selecting to go on disability. You can of course
return to work later, but keep in mind that you will likely have a
steeper hill to climb to get there.
Or perhaps instead of disability you are on the cusp of retirement
or have already passed sixty-ve and can retire immediately and re-
ceive a pension. Depending on your age, retirement may be an alter-
native to disability, although, you may also want to consider still
working in some capacity such as volunteering just to keep busy and
active. Do you have to retire at sixty-ve? No, not necessarily. These
days many individuals continue to work beyond sixty-ve. Daniel is
one such individual who chose to continue working well past that
age. In fact, when he was diagnosed with kidney failure at sixty-nine
he continued to work full-time for many years and still continues to
work part time. Now that you are on dialysis, you are not required to
retire, although you may decide that you want to.
Practicalities of Finances and Insurance

Plans while on Dialysis
Obviously decisions around disability and retirement are not only

based on your physical and mental health but also on how these
changes will impact you nancially. And by nancially we are not
only referring to the paycheck that you draw but also to the health
insurance benets that you receive depending on your income and
whether or not you are employed. Understanding the different types
of health insurance coverage for dialysis patients and how that may
affect you is a fairly complex topic, but well do our best to cover the
basics. Then wed recommend you follow up with your social worker
to determine which health insurance options are available to you and
which will serve you best.
Understanding Medicaid and Medicare

Lets start with a basic description of Medicaid, what it is, and who is
eligible to receive it. Medicaid is a state-run program that receives
federal funding. It is a form of insurance with extremely low co-pays
associated with dialysis, doctor visits, hospital visits, prescriptions,
and so on. There are two groups of people that qualify to receive
Medicaid. One group is families with young children at home that
meet low income guidelines. The other group is individuals who are
over sixty-ve or are blind or otherwise disabled and who meet low-
income guidelines. Under the criteria set forth by the Aid to the
Aged, Blind, and Disabled (AABD) program, individuals with renal
failure are considered disabled. The low-income guidelines will vary
from state to state but in general they are fairly rigorous and are de-
signed to grant Medicaid to those individuals who truly must survive
on small incomes. Many of the people who fall within this category
may have previously been working for minimum wages, for sporadic
periods of time, or for cash. Oftentimes they have been uninsured for
much of their past working lives. Ironically, now that they have renal
failure and can qualify for both disability and Medicaid, they may
suddenly nd themselves in much better nancial situation than they
had been in previously.
Although this is good news for these individuals, it can also be an
eventual catch-22 should they want to seek gainful employment and
get off disability. If, for example, they return to the workforce and be-
gin to earn enough money that they no longer fall within the low-
income guidelines, they will often no longer be eligible for Medicaid.
And even though they are earning more, their health care premiums
will rise and their out-of-pocket expenses will increase. Overall, going
back to work may not be cost effective for them, so in many cases,
staying unemployed is the better nancial option. Some states, in an
effort to help individuals return to work without being penalized -
nancially, will offer Medicaid buy-in programs. This means that for a
nominal fee these individuals can still receive Medicaid and the low
costs associated with it.
Medicare, on the other hand, is a health insurance program that is
paid out of a federal reserve of social security funds. Throughout our
lives as we work, we pay social security taxes and if we work a mini-
mum number of years, we become eligible to qualify for Medicare. In
some cases an individual may also be eligible to qualify for Medicare
through a spouses work history. Provided you or your spouse has put
in the necessary amount of time to be eligible, for you to then qualify
to receive Medicare you must either be over sixty-ve or disabled at
any age. And similar to Medicaid, if you are on dialysis, you are con-
sidered by Medicare to be disabled. If you begin peritoneal or home
hemodialysis, Medicare can go into effect immediately. If, however,
you begin with in-center hemodialysis Medicare coverage does not go
into effect until ninety days after your rst treatment.
On a historical note, in 1972 Congress passed an amendment

mandating that Medicare cover the costs of dialysis and this coverage
went into effect July 1, 1973, thus ensuring that from then on in
the United States dialysis would be available for all who needed it.
Before then, because of the limited supply of dialysis machines, indi-
viduals were deemed either to receive or not receive dialysis by med-
ical panels. Thus this was earth-shattering legislation for Americans
with kidney failure.
As of 2005, Medicare now has a prescription drug program. For
the most part, this is good news for dialysis patients, as most of the
drugs that dialysis patients need are covered. There are some cases
when one brand of drug is covered while another is not, but this is
more disruptive to the medical staff than it is to the patient. Even
with this plan, the numbers of drugs an individual must take multi-
plied by the cost of co-pay per drug per month can be very expensive
and at times unaffordable for patients on xed monthly incomes.
Dialysis patients are eligible for some medication nancial assistance
programs, which we will talk about shortly.
Medicaid and Medicare both cover a percentage of fees associated
with mental health services as well as physical health services. This in-
cludes visits to psychiatrists, psychologists, and social workers. How-
ever, many mental health providers have small practices that are not
equipped to deal with the paperwork required by Medicaid and
Medicare and for this reason will often charge a comparable sliding-
scale fee that a patient then pays out-of-pocket. If you need to see a
good mental health professional, ask up-front what his or her insur-
ance and payment policies are. If the persons services are not cov-
ered, often he or she will refer to professionals whose fees are funded.
Private, State, and Medigap Health

Insurance Plans
Every private health insurance plan is different and individuals who
have a private health insurance plan through an employer may initially
opt not to apply for Medicare depending on the specic costs, premi-
ums, co-pays, and exibility of their plan. However, there is a federal
law that protects private insurance companies from having to cover
dialysis costs indenitely. The law essentially caps the amount of time
(currently two and a half years) these private insurance companies
must pay for dialysis before Medicare must be employed to cover the
costs. When starting dialysis you should meet with your social worker
to understand if you might be best served to stick with your private in-
surance initially and move to Medicare later on, or if you would be
better served by moving to Medicare immediately. You will want to
look at which solution will save you the most money, as well as which
will enable you to be treated by the doctors or centers that you want.
In either case you may also choose to keep both insurance poli-
cies working for you, one as your primary insurance and the other
as your secondary insurance. Of course, after two and a half years,
Medicare must become your primary insurance. At that point you
can either keep your private insurance policy as a secondary insur-
ance plan or you can drop it entirely. As we said, every private in-
surance plan is different depending on your annual out-of-pocket
premiums and co-pays, so youd be very wise to spend time with
your social worker to understand what will be the least expensive
option for you.
Many states have health laws that give individuals with chronic
illnesses better health insurance options than those available through
private insurance companies. If your state has such an option, you
may want to investigate the benets of carrying this insurance.
Last, as we mentioned, in-center hemodialysis coverage under
Medicare goes into effect only ninety days after the rst treatment.
And for all dialysis patients, Medicare covers only a percentage of the
total treatment costs. This is the primary benet to having a second-
ary insurance policyeither private or stateto help cover some or
all of the costs that are not paid through Medicare. In addition, there
is a third alternative that can assist with these costs: Medigap. There
are several different Medigap policies but they all serve the same
purpose: to help you with the monetary gaps that Medicare does
not cover. Like private and state health care plans, you will pay a pre-
mium for a Medigap policy.
Other Forms of Financial Assistance

Maria mentioned that there were educational grants available to her
because she was on dialysis. We discussed this with our expert social
worker and she told us that there are several foundations and non-
prots that can help dialysis patients pay for a whole host of ex-
penses associated with dialysis such as medications, the rst ninety
days of in-center hemodialysis treatments that are not covered by
Medicare, and educational or vocational training, among others.
And she advised, Dont try to gure it out all by yourself. There are
questions you dont even know to ask and there are resources that ex-
ist that would never occur to you. Speak with your social worker,
nurse, or dietician about your concerns. Many times there are solu-
tions or at least possibilities of solutions that you wouldnt have the
slightest idea about. Using the professionals around you to nd these
resources is very important.
As an example you may not know that every state has an ofce of
rehabilitation services. These ofces are designed to assist people
who have a variety of physical and mental disabilities to optimize
their work abilities and opportunities. They can provide training or
give you money toward technical courses, or a GED or bachelors de-
gree. If you are disabled these services are entirely free. Most of the
time they can be extremely helpful, but occasionally you may en-
counter a rehabilitation counselor who is misinformed and thinks
dialysis patients are unable to work. But you dont have to accept no
for an answer. If you have an idea of what you want to do and you
just need somebody to help you get there, these ofces have the re-
sources to help. And although there are many people on dialysis who
are able to continue working in highly physical vocations, there are
some who nd they no longer have the strength and endurance to

continue in their eld. For these people, the rehabilitation services
ofces can be particularly helpful. Rather than going on disability
indenitely, such individuals, with the help of vocational rehabilita-
tion assistance, can many times re-train themselves to do alternative
types of work.
A Job Well Done

At the end of the day, most of us like to feel a sense of purpose and
meaning. We take joy in our accomplishments, which sometimes in-
clude performing a task or a job for pay, for intellectual stimulation,
for companionship, or for the pure joy of helping others. Now that
you nd yourself on dialysis, your professional life will likely shift a
bit to accommodate dialysis. You may need to redene exactly how,
when, and where you nd your sense of purpose and meaning. But
rest assured, you need not plan on relinquishing every bit of your
time to dialysis. And if you are lucky, you may even be able to con-
tinue doing what you were doing before you started dialysis. Even if
your world tips upside down temporarily, it will likely right itself
eventually and it need not come to a complete and permanent halt.
Remember to allow yourself the time to be sick and to feel better.
Then once the worst has passed, try to go back to doing what you
normally didor as close to it as you can get. That, unto itself, will
be a job well done.
Nine
Adapting to the Dialysis

Diet, Curbing Liquids, and
Embracing Exercise
arlier in the book we explained at length why it is so im-

Eportant to follow the dietary and liquid guidelines put forth by
your physicians. First, your willingness and ability to follow the rules
can impact how long you are on this earth. And if that is not enough
to motivate you, bear in mind that what you eat or drink and how
much of it will directly affect how good or bad you feel before, dur-
ing, and in between your dialysis sessions. OK, you are probably
thinking, I want to follow the rules, but sometimes sticking to
them is easier said than done. And you may have a point. Many of
us know that ossing is good for our gums, but do we do it every
day? How many of us smoke even though we know it is terrible for
our health? Sometimes we want to do better, we fully understand the
implications of our actions, and yet we continue to practice bad
habits and make poor choices. This is the challenge that many dialy-
sis patients struggle with. We understand it is very difcult for some
people to adapt to and comply with the diet and the uid restric-
tions. Oh, do we understand! And that is why this chapter is less
about guilting you into doing what is right than it is about empow-
ering you to take control and giving you the tools to help you make
smart choices when it comes to diet and exercise.
For the most part peritoneal dialysis patients are less restricted
than hemodialysis patients when it comes to food and drink. This
chapter may still be of interest to PD patients but will likely be more
relevant to patients on hemodialysis.
For a chapter with tips on diet and exercise for dialysis patients,
who better to jump-start the discussion than a dietician at a dialysis
clinic? Susan sat down with Julie, a dietician who had been working
with dialysis patients for over eight years. This was a prime opportu-
nity for Susan to learn just what made dialysis patients tick when it
came to curbing their diet and liquid intake. What motivated them
to do well? Alternatively, what kept them from making the changes
that would make them feel better? Julie was happy to share her in-
sights into what she had learned over the years from so many of the
patients she had worked with.
Julies Story, a Dieticians Perspective
Do you nd that people struggle with the diet?

Yes very much so. You have two groups of patients. One group
of patients never really learned about a healthy diet growing up and
they just want to eat what they grew up eating. They are struggling
because everything they like is off limits. Then you have another
group that learned to follow a healthy diet and suddenly they are
struck with this task of limiting foods that they previously thought
were healthy. So whether or not you were following a healthy diet
before dialysis you still have to make big changes.
What motivates your patients to stick with the diet and limit their
liquids?
The most effective motivation is usually a three-part process.
First I try to get them to change something. Once they make the
change they will see some improvement. Then I congratulate and
praise them on that improvement. Most patients are motivated by
Adapting to the Dialysis Diet 185
praise and positive reinforcement. I will also try to make it difcult

for them to come up with an excuse for why they cant make it hap-
pen. We are all guilty of thinking up excuses for why we dont want
to do something. But I try to stay positive and focus on the positive.
For example, when someone starts on dialysis sometimes Ill give
them a grocery list of the foods that they can have as opposed to a list
of what is off limits.
Julie explains that this is an ongoing process of motivation and
education for the patient. Most lab tests are done monthly but some
can be done weekly. For example, if a patients phosphorous levels
are quite elevated he or she would be retested a week later. Perhaps
the patient had initially forgotten to take a binder or had eaten
something that he or she did not realize was so high in phosphorous.
Hopefully, if the patient were to be very careful the following week,
he or she would see an immediate improvement to the phosphorous
levels after being retested. What is helpful for patients is that they
can receive feedback early and often. Julie views her role in this pro-
cess as educator. She can use the lab results to explain to patients and
their families how specic foods and or medications can directly im-
pact the values that appear on the printout. Julie then elaborated on
why certain patients are able to succeed at making changes to their
dietary lifestyle while others are not.
What are the key characteristics of patients who do well on dialysis?
I think the patients that do well are the ones who feel that they
have some control. If patients feel that they can alter what they eat or
drink and actually enhance their health and improve their life then
they are easier to work with. They will listen, be open to suggestions,
try them out, and let you know if the suggestions worked. The patients
who are willing to explore what it will take to feel better are the ones
who, in my eyes, do better.
What are the key characteristics of patients who dont do well on
dialysis?
I think perhaps patients who have a lack of self-condence do
not do as well. These patients feel like they dont have that much
control over their actions. I suspect some just feel they are destined
to be unhealthy and there isnt anything they can do to feel better.
Likewise, they feel that they dont have the capability to control what
they eat. I often hear patients say, I dont have willpower. They as-
sume that they cant do any better, and that is simply not true. But it
will be true as long as they feel that they dont have the power to
change what they do.
So basically you are saying that attitude can have a big effect on their
ability to make dietary changes?
Yes. I strongly feel that if people believe they can make a differ-
ence in their lives, then they will. The people that really say to them-
selves, Ok, I can do this. I can do better. I can do this to protect my
heart. I can do this to protect my bones. These are the people who
are going to thrive on dialysis.
How important a role do the immediate family members play?
I think family plays a huge role. There are a lot of ways that a
family can help or hurt a patient. You dont want someone trying to
sabotage what you eat. That can be very harmful. On the other hand,
many families are very devoted to learning about the diet and trying
to shop and cook for it. Often when patients get their lab reports Ill
jot notes on the paper for them to share with their families. A lot of
times they will say to me, My family really likes to see this or I al-
ways share this with my family.
What are your thoughts on cheating?
I think people should enjoy the foods that they like. Im not a
stickler for never having pizza or never having a piece of cheesecake.
There are certain foods that are worth eating to that person and
that person should eat those foods on rare occasions and in small
amounts. I would encourage cheating when it is planned. For exam-
ple, if you know you are going to eat enchiladas that day, be very
careful the rest of the day; take your pills with you and savor every
little bit of your meal like it was your last enchilada. I think to occa-
sionally eat something you know is a forbidden fruit, but to eat it in

such a way that you do not overindulge, is important. This can really
give you a lot of self-condence in your ability to stray without en-
tirely losing control and still be OK.
Have you ever contemplated what it would be like to be on dialysis?
I do think about it all the time. I think it would be very hard to
sit still for so long without wiggling. Im a wiggler. But I think getting
that report that tells you how you are doing would be very motivating
for me. Even now, I like getting tests back on how my cholesterol is. I
suspect that even the folks who dont appear to be as interested in
their reports, deep down inside they also like to hear when theyve
done well. The reports show that everyone has the potential to do
something positive for his or her life.
Lets say you are motivated to make changes, you do believe in
yourself, and you have enough self-esteem to take care of yourself.
You are committed to taking charge and refuse to resign yourself to
helplessness. Excellent! You are off to a great start. Clearly, according
to Julie, these are the philosophical cornerstones to success. Then
what? What do you need to do to make it happen? The rest of this
chapter will be chock full of practical suggestions that pertain to the
dialysis dietary and uid restrictions. Well also include some sugges-
tions about kicking up your heels and incorporating exercise into
your life.
Eating Right
A Brief Refresher: Whats in It for Me?

Most people on dialysis will need to follow a low phosphorous, low
potassium, low-sodium, high-protein diet. Wow! That sounds like a
lot to keep up with. But dont be overwhelmed. Plenty of folks do it
and you can too. Weve touched on many of these dietary restrictions
earlier in the book, but lets do a very quick review plus add a bit
more information about them. Well briey explain the importance

of each restriction and how it affects your body.
Phosphorus: Now that your kidneys arent working properly,
phosphorus can build up in your blood, and this causes calcium in
your blood to drop. This in turn causes your parathyroid glands to
become too active. Over time, this overactivity creates a loss of cal-
cium from your bones and eventually weakens them. You can pro-
tect your bones by cutting down on foods high in phosphorus and
by taking phosphate binders (which prevent phosphorus from be-
ing absorbed in the blood) and supplements like calcium and vita-
min D. High-phosphorus foods include all dairy products like
milk, ice cream, and cheese, or foods made with a lot of dairy prod-
ucts, such as wafes and pancakes. Additional high-phosphorus
foods include dried beans and peas (with the exception of green
beans), nuts and peanut butter, and beverages such as cocoa, colas,
and beer.
Potassium: Potassium keeps your heartbeat regular and your mus-
cles, including your heart, working right. Like phosphorous, potas-
sium levels are typically regulated by the kidneys. Now that yours are
no longer working properly, your potassium levels may increase. If
your potassium levels become too high you are at risk of having a heart
attack. Your lab reports will identify whether your potassium levels are
safe, concerning, or dangerous. You can lower your potassium levels by
cutting back on foods such as bananas, cantaloupe, oranges, avocado,
spinach, tomatoes, and many other foods that are high in potassium.
Sodium: Sodium, known in common language as salt, makes us
retain uid. And it makes us thirsty. Aside from table salt, it is also
found in large amounts in canned soup and vegetables, pizza, pret-
zels, pickles, and processed meats such as hot dogs, salami, bacon,
and cold cuts. Limiting sodium, which minimizes uid intake and
retention, may create less stress on your heart, make it easier for you
to breathe, help keep your blood pressure under control, and make
your dialysis treatments more comfortable.
Protein: Protein plays a critical role in promoting muscle growth

and tissue repair. Protein from your tissue, as well as protein that you
eat, is broken down to urea that accumulates in the blood and is re-
moved by dialysis. In order to make up for this loss of protein you
will need to eat larger quantities of high-quality protein that is usu-
ally found in eggs, sh, chicken, and meat.
Food Glorious Food

Thats a lot of restrictions to keep track of and, yes, you are going to
have to make some big changes to your diet, but a key element to
your success will be constantly reminding yourself that you can still
have so many delicious foods. Before or immediately after starting
treatment, you will receive a list of good and bad foods from your
dietician or doctor. Over time you will come to know this list by
heart, but initially take it with you to the grocery store, to restau-
rants, and to other peoples homes and refer to it frequently. Try to
treat the diet as an opportunity to explore and discover food anew.
You may even uncover foods and food products that you never
knew existed or barely ate beforefoods you will now come to
love. There will suddenly be foods that you need to eat more of, like
chicken. And there will be foods that youd otherwise imagine to be
healthy that you must now eat very little of, like bananas. But in the
end, you will still have plenty of nutritious and delicious options
to choose from. And like Julie said, you might be best off focusing
on the foods that you can eat rather than on the foods that you
shouldnt eat.
One of the reasons it is important to focus on the positive is to
avoid feeling deprived or cheated. Dialysis patients are like children
when it comes to food. If you tell them they cant have something,
they immediately want it! Better to focus on the food choices that are
tasty, satisfying, and good for you. It may be hard to imagine at rst,
but in time you will get accustomed to your new diet and your taste
buds may even adapt.
Living under the Same Roof: Eating by

the Same Rules?
Julie touched on the importance of family members when it comes
to adapting to the diet. As one gentleman reected, I think the diet
is harder on my spouse than it is on me. She has to go in the closet
to eat chocolate, orange juice, peanuts, and cheese. She has all of the
things that Im not supposed to have but she is very supportive and
does it behind my back. As you can imagine, if you are surrounded
by individuals who are encouraging you to eat ice cream and pizza
with them, that would be extremely unhelpful and disruptive to
your success. On the other hand, now that you must give up, or at
the very least minimize, your consumption of certain foods, is it fair
to expect other family members to do so as well? What is their role in
all of this? Do they need to become closet eaters?
If you live under the same roof, your family members habits and
willingness to be supportive will have a profound effect on your suc-
cess as well. Lets be clear: as Julie mentioned, it is extremely impor-
tant to have your family members ghting the good ght with you.
But youll need to nd a happy medium that is both helpful for you
and not overly limiting for them. Perhaps you can agree to only keep
foods in the house that are good for you, or that you do not care
about. For example, lets say youve never really cared for oranges,
but your spouse loves them. As a dialysis patient, oranges arent very
good for you, but they arent particularly tempting either. There is
no reason your spouse shouldnt have oranges stocked at home. On
the other hand, what if your Achilles heel is Cookies and Cream ice
cream? If you get as close as a country mile to a pint of that stuff you
just cant resist. Well then, it wouldnt be very supportive for this to
be in your freezer. Perhaps in this case, your family can save their
consumption of ice cream for separate visits to Baskin & Robbins.
The key to your family members support is education. Just like
you, they must familiarize themselves with the list of foods high in
potassium, phosphorous, and salt. They must take the time to under-
stand what is good for you versus what is bad for you. The dialysis
diet is often anti-intuitive. What may seem healthy to most people
may be very unhealthy for a dialysis patient. If your family members
do not reeducate themselves about what really is healthy for you,
they may try to be helpful but unknowingly undermine your efforts
to eat well. For example, one patient told us that her mother was al-
ways saying to her, You are too thin, you need to eat more. You
need to keep up your strength. The womans mother would then
proceed to push foods on her daughter that clearly werent good for
her to eat. While the patients mother had the right intentions, she
didnt understand the dialysis dietary restrictions well enough to fol-
low through correctly and instead was unknowingly sabotaging her
daughters efforts.
Following good intentions with bad recommendations can be
easily remedied with a little education. If you feel that you arent up
to the task of educating your family members, perhaps arrange for a
consultation with the dietician and ask your family to attend with
you. When you get your lab reports back and have done well or
shown improvement, involve your family members too. Show them
how well you are doing! Like you, they also enjoy positive feedback
and whether it is a conscious decision on their part or not, their will-
ingness to support you is also reected in those lab numbers.
Dining Out
Many of us enjoy being able to eat out with friends or family, plus it
is a treat not to have to cook or clean up after a meal at home. Din-
ing out is often a fun, social affair. But stepping out of the house,
away from our own kitchen, means that we have more rather than
fewer choices. With the increase in selection comes an increase in
unhealthy options. The key to success when dining out is planning
ahead. By following the suggestions below you can still eat out in a
healthy manner:
If you are planning to eat a meal out, lets say dinner, try to be
extra careful with your intake during the morning and the after-
noon. Throughout the day save your uids and eat smaller por-
tions of foods low in sodium, potassium, and phosphorus.
You can really eat anywhere, but some restaurants will have more
healthy selections than others. Look for restaurants and cuisines
that will give you the most to choose from, but know that if you
end up someplace with fewer choices, there will always be some-
thing for you to eat.
If you saw the movie When Harry Met Sally, youll recall that
without fail, every time Sally ordered off a menu shed ask for
substitutions and special preparations. When it comes to order-
ing food the way you want it, dont be shy; be a Sally. These
days most restaurants are accustomed to serving diners with di-
etary constraints. Feel free to ask for sauces and dressings on the
side. Dont hesitate to ask for ingredients to be left out or for
substitutions to be made. Basically using the menu as a guide,
design a meal that youd like to eat and will be good for you.
Then place your order. Provided you arent asking the chefs for
an extra cross-town trip to the market, youll be surprised at
how often (almost always) they are able and happy to accom-
modate you.
Try to stay away from fast-food chains. Aside from being very
high in fat, fast foods are typically very high in sodium as well. If
you just cant resist, then ask for the nutritional content informa-
tion of the menu items, which most fast-food restaurants can
provide. Then make the best informed choice. Opt for kid-size
portions and request that your items be prepared without salt.
When ordering from any restaurant, try to avoid spicy foods as
they tend to make you thirstier.
Ethnic restaurants are often excellent options for dialysis pa-
tients. There are many healthy selections to choose from at
Indian, Korean, Japanese, and Mediterranean restaurants, just to

name a few.
Following this ethnic train of thought, if you live in a town or
city that has a sizable Jewish population, nd out if there are any
nondairy kosher restaurants nearby. Nondairy kosher restau-
rants, meaning restaurants that use zero dairy in their recipes, are
a great option for dialysis patients. Even if something on the
menu appears to be made with dairy, it is actually made with a
substitute and is entirely dairy free.
Splitsville is a good place to visit when you are on dialysis. Most
dieticians will agree that the food portions in America have
grown to ridiculously unhealthy sizes. Consider splitting meals
with a friend or family member or, when you order, ask the
waiter to bring half of the meal and put the other half in a con-
tainer to go. That way you wont be tempted to overeat. Or, for
portion control, order an appetizer as a main dish.
Last, bring your binders with you and take them as needed.
In fact, keep binders conveniently on hand anywhere that
you might find yourself eating, in or out of the house. One
patient told us that since going on dialysis he has learned
to keep binders in his truck, car, wifes purse, and bedside
table.
Holiday Eating
Aside from dining out, the next big challenge for many of us to stick
to our dietary guns is often holiday eating. Much of what we recom-
mended above also applies to holiday eating but here are a few addi-
tional tips:
Try to eat a small meal of healthy foods before partaking in a
holiday feast. This way youll be less inclined to overindulge in
foods that arent as healthy for you.
Both white and sweet potatoes can be used in a variety of

dishes provided theyve been peeled and soaked overnight in
a bowl of water. Potassium is leached out of the potato and
into the water, leaving behind a potato that is good for you
to eat!
Good food choices during traditional American holidays are
beef, turkey, fresh sh, rice, noodles, pasta, white bread stufng,
green beans, and apple, cherry, and mixed berry pies. Poor food
choices are ham, potatoes and sweet potatoes that have not been
soaked, pumpkin or pecan pie.
Creativity in Cooking and Shopping

In addition to tips for dining out and holiday eating, weve dis-
covered a few other gems as weve embarked on this new culinary
adventure:
Natural or organic grocery stores like Whole Foods or Wild
Oats are excellent places to find dialysis-friendly products
and canned goods. They have many foods and drinks that
have low or no preservatives, which often means low sodium or
low potassium. But of course, the critical test is to read the
label.
The best cookbook that weve seen written specically for indi-
viduals on dialysis is titled Cooking for David: A Culinary
Dialysis Cookbook. For the most part, the recipes are easy, use
common ingredients, and are quite tasty. Specically for those
who are rst introduced to dialysis and are fearful of cooking
within the connes of so many restrictions, this cookbook is
probably the best place to get started.
Once youve got a good grasp on the diet and have built up your
culinary condence, you can then experiment with just about
any recipe in any cookbook. Margie has learned to take many

of the recipes in her tried and true Better Homes & Gardens
cookbook and adapt them, using common substitutions to meet
Daniels dietary needs. As an example, she frequently substitutes
just a fourth of a cup of low-sodium tomato sauce for the two
cups of tomato sauce called for in a recipe, and uses onions and
green and red peppers instead of tomatoes when making
spaghetti sauce.
For the most part, cheese is off limits, but Brie cheese is not pro-
cessed and is lower in phosphorus, making it a best-choice dairy
product for those on dialysis. However, you still need to eat it in
moderation. If you crave a rich and creamy cheese, you might
want to splurge and eat an ounce of Brie.
New food products are constantly being developed and brought
to market. Your dietician will know about any new products
that might be of interest to you given your renal dietary needs.
Cheating versus Eating Poorly

Weve also learned a very valuable concept about living on dialysis:
cheating is okay. Eating the foods you love is a very important part
of living. If you love chocolate and you tell yourself, Well now that
Im on dialysis I guess Ill never eat chocolate again, then you are
living to dialyze instead of dialyzing to live. With that said, you now
need to learn the importance of cheating in moderation. As Julie dis-
cussed, if you are going to cheat, you need to do it in a measured and
controlled fashion as an occasional treat. You cannot go hog wild. Be
judicious. But when you do cheat, you should thoroughly savor the
experience. And after the fact, you can take pride in yourself for hav-
ing allowed yourself to live a little without going crazy. Remember
too, you can cheat occasionally, but if you nd yourself cheating
every day then you arent cheating. You are just eating poorly.
How to Handle Liquid
Quenching Your Thirst

Some dialysis patients nd adapting to the food restrictions to be
the toughest challenge whereas others nd limiting their liquids to
be far worse. And some folks probably think these are equally mis-
erable tasks. Regardless of which camp you fall into, you will prob-
ably have to make an effort at cutting back on how much you
drink. In this section well briey review the importance of mini-
mizing your liquid intake. Then well share tips and tricks on mak-
ing it happen.
Liquid: Less Is More

Why do dialysis patients need to cut back on liquids? Weve ex-
plained this in great detail earlier in the book, but in brief, too much
liquid is bad news. Youve heard the old saying you are what you eat.
For dialysis patients a more accurate statement would be, you are
what you drink. Indeed, what dialysis patients drink literally stays
with them between dialysis sessions, putting additional stress on all
of their physical systems and creating both short-term and long-term
complications and discomfort of varying magnitudes, including
swelling, high blood pressure, shortness of breath, heart damage,
cramps, dizziness, headaches, and nausea.
But what exactly is liquid, and what exactly is too much? Fluid is
anything that ows, pours, or melts at room temperature. This in-
cludes water, milk, juice, coffee, tea, soft drinks, alcohol, ice, popsi-
cles, ice cream, sherbet, soup, gelatin, yogurt, and pudding. And if
you stop and think about it, you will realize that many fruits and
vegetables, like lettuce, apples, or pineapplewhile they cannot be
pouredalso consist in a large part of liquid.
Determining liquid weight gain is, as we discussed in Chapter 2,
very much a process of trial and error. During the rst few months of
dialysis you will have to experiment to understand how much liquid

you can consume between dialysis sessions to remain reasonably com-
fortable during and after your session. Weve read in literature that
the ideal weight gain is about two pounds per day. But most dieti-
cians will tell you that there is no precise number that can be applied
to everyone. The right amount of liquid weight gain varies by indi-
vidual. With that said, you may want to start out with two pounds as
a frame of reference. Check with your doctor or nurse as to how
many recommended ounces of liquid a day you should be consuming
to stay on track. Weigh yourself every day to see how you are doing.
If you gain more than two pounds in one day that should serve as a
warning that you are likely consuming too much liquid. Eventually
you will become familiar with your body on dialysis and what is the
optimal liquid weight gain for you. Bear in mind that if, as an exam-
ple, you are on a Monday, Wednesday, Friday dialysis schedule you
will always have gained more on Mondays because you will have gone
the longest stretch without dialysis. This means that during your long
stretch you should be even a little more aware and careful of your liq-
uids than you would be during the rest of the week.
Now that you know what liquid is and how much is too much,
well list a number of the helpful hints weve compiled over the years
for beating the urge to drink too much and too often. Not all of
these will work for you. The key is to try them out and seek out a
few techniques that will likely help you cut down on your thirst,
beat the heat, and minimize the discomfort of mouth dryness.
Quick Tips for Drinking Less
Use small cups and glasses to give you the illusion that you are
drinking more rather than less.
Spread out your liquid consumption throughout the day by
drinking small amounts more frequently rather than just having
a few large portions two or three times during the day. This will
help you feel more satised.
Learn to sip instead of guzzle.

When dining out asked the waiter not to rell your glass or ask
him or her to remove it from the table altogether. This will en-
sure that you dont keep drinking unnecessarily.
Add fresh lemon to ice cold water to help cut down your thirst.
Consult with your doctor about drinking alcohol, but if you
do choose to partake in an alcoholic beverage, avoid mixed
drinks. Have it on the rocks or straight up to minimize
liquid.
Learn how to take pills with applesauce or use your liquid at
meals to take your pills.
Bring your own homemade low-sodium popcorn to the movies.
Youll save both salt and money.
Quick Tips for Beating the Heat
On hot days, serve up your drinks cold. Put them in a frozen
mug or use plastic decorative ice cubes if you wish to avoid
melted ice watering down your drink. You can use real
ice cubes, but youll need to factor them into your liquid
intake.
Likewise, you can suck on small amounts of ice or eat in moder-
ation avored crushed ice for variety. By sucking, you are essen-
tially making your liquid consumption last longer.
Suck on small amounts of frozen grapes.
Stay inside and in the shade as much as possible.
Quick Tips for Relieving Dry Mouth
Brush and rinse your mouth with cold refrigerated mouthwash.
Chew sugar-free gum or suck on sugar-free hard candy.
Suck on a lemon or lime.
Snack on cold fruits or vegetables that are within your dietary

allowance.
Weve listed here just about every diet and liquid tool and trick
weve heard of. Of course, youll probably uncover a few others, but
do test out some of the tricks above and if you nd something that
works, stick with it.
Get in Motion
Movers and Shakers: The Positive

Impact of Exercise
We cannot simply talk about diet and health without also addressing
exercise. In this day and age, our society has learned that the two go
hand in hand. Exercise is good for your cardiovascular system, your
waistline, your energy level, balance, exibility, and your overall emo-
tional and physical well-being. Just because you are on dialysis doesnt
mean that you are exempt from starting an exercise routine. In fact,
exercising may now be more important to your well-being than ever.
Do check with your physician, however, before you get started on any
exercise regime. Provided that you get the all-clear, you will have no
excuse not to exercise. Moreover, youll need to stick with an exercise
routine. Many of us have the best of intentions when we start exercis-
ing, and a month later our intentions are nowhere to be found while
we are planted rmly on the couch. With this in mind, your goal is to
(a) get started and (b) keep going until (c) exercise becomes a part of
your routine that you simply cannot do without.
How can one move from point (a) to point (c)? We will share with
you a few suggestions to help you toward this end. Most of our exercise
suggestions here are not specic to dialysis patients but are universal
tips about exercise that are equally relevant to the dialysis community.
First, nd something that you enjoy doing. Do you like to walk,

ride a bicycle, swim, or take ballroom dance classes? The great thing
about exercise is that there are so many types to choose from. Pick
something that you like and start there. For example, if you hate
jogging then dont force yourself to jog. Making yourself do some-
thing that you dont like is not a recipe for success. But if you like to
walk, then make walking your exercise of choice. Chances are if you
nd enjoyment in your activity of choice, that will naturally encour-
age you to want to get out and do it more often.
Second, start out slowly and build up both your pace and overall
time spent exercising. For example, perhaps you are overwhelmed at
the thought of getting started. If that is the case, then just walking
out the door the rst time will be considered a success. Dont set
unreasonable expectations for yourself. If you havent exercised for
weeks, months, or years, perhaps start out by walking for fteen
minutes at a leisurely pace. Over time, slowly add increments of ve
additional minutes to your walk until eventually you are up to
thirty minutes. Likewise, perhaps start out exercising twice a week
and slowly build up to three to four days a week. Then start work-
ing on increasing your pace. But dont overdo it in the beginning. If
you set your sights too high and overexert yourself, you may nd
your workout overly strenuous and that may turn you off from con-
tinuing your routine. Remember, its not where you start; it is where
you nish.
Third, dont worry about what other people will think. Many of
us avoid going to the gym because we are self-conscious or worried
about what others might think of our too large or too weak or too
slow or too uncoordinated physique. Forget what others think. If
they knew what you were contending with, and on top of everything
you have to do to stay healthy youve gotten yourself to the gym,
they would think you are a star. And even if they didnt, they are too
busy thinking about themselves to be passing judgment on you.
Dont be afraid to look foolish in other peoples eyes. Just try your
best and get out there.
Fourth, sometimes it is easier to get over our inhibitions and in-
ertia by having an exercise buddy. Also an exercise buddy will force
you to continue exercising on days when you dont feel very inspired.
Sometimes just knowing that you have to be accountable to another
person ensures that you will show up and participate when you
might otherwise be inclined to settle in on the couch. So forge a
partnership with a friend, a child, or a spouse and encourage each
other to create and stick to a routine. You might want to seek out a
class at your local YMCA, community center, or athletic club. Many
tness centers or clubs have an extensive menu of classes to choose
from for all ages, interests, and tness levels. And for those who can
afford it, a personal trainer once a week is also a fantastic investment
in your health. A trainer will help create a routine that strengthens
your body, and he or she will keep you motivated both during and
between sessions.
Fifth, in addition to getting a cardiovascular workout, incorporate
some weight training into your routine. Weight training works to
strengthen and tone your muscles. You do not need to work out at
a gym to do weight training. You can put together a program to
strengthen your muscles just by doing a number of exercises at
home. There are many videos and books that have detailed explana-
tions of the types of movements that can strengthen your muscles.
Last, once youve settled into a routine, make sure to shake things
up from time to time. Again, if you nd that you are bored and are
no longer having much fun with your exercise regime, then you will
be more inclined to camp out on the couch. Adding some variety to
your routine can renew your interest. For example, if youve been
walking outdoors but have also always enjoyed bicycling, then try a
local bike path one day just to see how you like it. If you do, then
perhaps alternate between bicycling one day and walking the next.
If youve been exercising for years, then youll know that nothing
weve listed here is particularly new or earth shattering. These are
simply practical tips that many tness professionals have shared over
time with the general population. Once you get in the groove you
will really start to enjoy the many benets that consistent exercise
has on both your physical and mental well-being. And taking care of
both body and soul is of critical importance to the overall health of a
dialysis patient.
Patients Weigh In
In speaking with a number of patients, we heard a slew of comments
about the dietary and liquid restrictions. As one patient told us, he
and his wife have been known to refer to the dialysis diet as the
diet from hell. Other patients told us stories of terrible cramping
from drinking too much liquid, or landing in the hospital from
overindulging in watermelon. We heard about body aches and itch-
ing from eating too much phosphorous and not taking binders. We
heard complaints that the binders are constipating. All in all, we
heard that curbing desires for certain foods and liquids is tough.
Most of these same patients also told us that they have learned,
albeit the hard way, how to say to themselves, Enough. You have
had enough. They have learned that certain foods and behaviors
arent worth the consequences. They have learned how to read the
labels on food products at the grocery store. They have learned to
retrain their taste buds. They have learned to soak their potatoes
overnight if they want to make their favorite potato salad. They
have learned that if they are going to eat ice cream or a slice of
pizza then they must take their binders and be extra careful for the
next few days. They have learned their limits. And even those who
have learned all this, even they still claim that sticking with this
diet and these limitations is sometimes very hard. Managing your
diet and your liquids now that you are on dialysis probably wont
ever become easy. But like many of the patients weve spoken with,
you can learn to give it your best. Your body will respond positively
to your careful attention. Oddly enough, this response will, in a
sense, be a show of gratitude to you for your efforts. Or in simpler
terms, eat well, drink little, and be merry; your body will thank
you for it.
Ten
Traveling and Planning

for Emergencies while
on Dialysis
Taking a Leap of Faith
The world is a book and those who do not travel read only a page.
St. Augustine
hether you intend to read one page or twenty, you may

Wfeel that your world has suddenly shrunk now that you or a
family member has gone on dialysis. You may even feel that you can-
not travel beyond a thirty-mile radius of your dialysis clinic or your
home. Whatever boundaries youve created in your mind, in most
cases they are just thatboundaries of the mind. With some courage,
planning, smarts, and a general belief in the kindness of others you
can take your show on the road. In this chapter we will present a great
deal of practical information that weve learned over the years about
traveling while on dialysis. Well also address common fears dialysis
patients may have about travel and uncover some realities that will
help to assuage these fears. Generally speaking weve found travel to
be liberating and exhilarating. Above all, a trip away, an adventure,
serves as a powerful reminder that life is meant to be lived.
Throughout the book weve shared the perspectives of several
individuals who have encountered dialysis as either patients or
Traveling and Planning while on Dialysis 205
professionals. Now it is time to share our ownor more specically,

Daniel and Margies perspectives. At the time this book was written,
Daniel had been on dialysis a little over seven years. When he began
dialysis at the age of sixty-nine, he and Margie lived permanently in
Illinois. All of their children lived far from them. Two of their three
children lived in different states. The third lived across the Atlantic
Ocean in London. Over the years Daniel and Margies family ex-
panded with the addition of several grandchildren. Eventually they
had grandkids in California, Texas, and England. For many of the
years that he was on dialysis, Daniels mother was alive and living in
Israel. His two brothers also lived in Israel. Margies only sibling was
in Washington, D.C. Clearly the world was not simply a book for
Daniel and Margie. It was the book, the one that would record the
happy occasions, celebrations, and milestones of their family. If they
wished to share in many of these simple joys of life they would have
to overcome any anxieties or uncertainties they had with regard to
travel. Like the rest of the participants in this book, Daniel and
Margie offered to be interviewed.
Daniel and Margies Stories: Perspectives

of a Traveler on Hemodialysis and His
Spouse / Travel Companian
One spring day, Susan sat with her co-authors and parents at her home
in Texas. At the time of the interview, Daniel and Margie had stopped
to visit Susans family in the midst of a driving vacation in the Texas
Hill Country. Already having been in Fredericksburg and surround-
ings, they were essentially passing through, taking a prolonged pit stop
in Austin before heading to Houston. Dialysis visits had been planned
for months in advance and to date, had been going smoothly. Daniel
and Margie were having a grand time. It seemed the perfect opportu-
nity to hear what they had to say about stepping out in the world:
Can you tell me about the rst time you traveled after Daniel began
dialysis?
Daniel: I went on dialysis June 20, 1999, shortly after undergo-
ing a triple bypass on my heart. That following September we trav-
eled for the rst time. We went from Saturday morning to Monday
morning so that I didnt have to dialyze away from home.
Margie: We wanted to get away and needed a change of scene,
but we were nervous about leaving the house. We drove to Lakeside,
Michigan, which was only eighty miles from home, just to build
some courage. It wasnt a great trip, but we do consider it a success.
We walked around. We saw the lake. We tried to lift our spirits after
Dan had been so sick.
What was your next trip? How did you choose your destination?
Margie: Our next trip was two months later for Thanksgiving.
None of our kids lived nearby and for special occasions and holidays
we like to be where they are. That Thanksgiving we ew to Califor-
nia to see your sister and her family.
Daniel: I went to a wonderful dialysis center in Mountainview,
California. The staff was extremely receptive. Over the years, it has
turned out to be my favorite clinic that Ive traveled to because Ive
been there so many times. Im as comfortable there as I am at my
home clinic, even perhaps more comfortable.
What did you learn as you built on your successes, and began to travel
more frequently and farther from your home?
Margie: That rst year, we traveled to Florida during peak tourist
season and learned that when you go to a popular resort area at the
height of the season you shouldnt expect to receive good dialysis
times. The locals get the best times. Then the folks who live there for
a few months in the winter get the second-best times. The short-term
vacationers are left with the least desirable times.
Margie explains that while in Florida Daniel had to dialyze at
8 p.m. in a small town forty-ve minutes away from the hotel. That
meant she had to spend three hours in the small town by herself at
night while he dialyzed. She ended up walking around a Target

store at ten at night wondering who elsebesides the wife of a dial-
ysis patientwas shopping there at that time. She tells Susan that
soon after that trip, she and Daniel went on a cruise where Daniel
dialyzed in the evening. Again, this wasnt much fun for her. All the
evening programs on the cruise were designed for couples, and she
said she didnt t in. Margie adds, Eventually we learned how to
best schedule Dans dialysis times to t when we want to be to-
gether. We now know that on a ship, morning dialysis is best. We
can eat out and go to the shows together at night. But in an Ameri-
can city Dan can dialyze during the day or in the evening. There is
a lot for me to do during the day. I can sightsee, shop, or walk. Or
at night I can stay in the hotel and read. Evening dialysis is prob-
lematic if we are on a cruise or if the center is far from where we are
staying.
Does a companion to someone on dialysis spend much of his or her
vacation alone?
Margie: Yes. Now when we go on vacation I spend about 40% of
my vacation alone and I know how to do that quite well. But I am a
very different person from the one I was when Dan rst went on
dialysis. Im much more independent now. Initially I was used to do-
ing everything with him, and I didnt know how to be alone. But the
more I did on my own, the easier it became. I learned how to go to
the movies alone. I love to window shop by myself. Ill go to muse-
ums, even plays. There are limitless opportunities for one to explore
by oneself.
Does either of you get anxious or scared when you travel?
Daniel: Every time I go to another city for dialysis, even if Ive
been there before, there is a certain amount of anxiety that comes
over me. I always wonder, Will the people be nice? Will they be
competent? Will everything work out all right? I dont relax until
the needle is in my arm and the dialysis starts. Going to a new place
can be emotionally taxing, and I understand why some patients
dont want to travel. But to my surprise, every time I arrive at a new

clinic the staff anticipates that I will be nervous. As a result, they go
out of their way to make me feel comfortable and at ease. To this
day Ive been to almost thirty clinics and the staff has responded
this way every single time, everywhere, without exception. Some of
my fellow patients have told me they dont travel, because they are
afraid the clinics wont be good. I tell them, Dont worry about
that. If youve known one dialysis clinic youve basically known
them all.
Why do you travel?
Margie: I think to see family and friends. At our age you
want to see your children and your grandchildren. You want to
celebrate the happy occasions that your friends have. If there are
special occasions like weddings or graduations, it is very meaning-
ful to me and to Dan that we arent locked out of being able to go
to these events and enjoy them. It is important that we can be like
anybody else with our friends and family. But to experience these
wonderful occasions, we had to build up our courage one trip at a
time.
Daniel: I think that one travels to cut through the monotony of
life. This is true for people who are healthy too but when you are on
dialysis the monotony is heightened and the schedule is exponen-
tially tiresome. When you are on hemodialysis come rain or shine
you have to go Monday, Wednesday, and Friday. You cant escape
that cycle. Of course, even when you travel you still have to dialyze.
But the change of scenery is good for the soul and adds color to your
life. Whether you travel across the state, the country, or the ocean,
you feel more alive, more like a normal person.
Margie: A lot of times when we are someplace Dan will look at
me and say, I cant believe Im here and Im on dialysis!
Daniel: Thats true. When Im in a new place, Ill look around and
say to Marge, My God, this is amazing! Here I am in the hills of
central Texas walking along this small main street full of antique stores
and Im on dialysisor, here I am in San Francisco at the Museum of

Asian Art and Im on dialysis!
Have you ever had a bad experience with dialysis when traveling?
Daniel: No, not even Mexico, which some people think of as a
third-world country. Ive been to seven countries and to twenty dif-
ferent cities in the United States. I have never had a bad experience. I
did have one marginally so-so experience when I was put on a faster
dialysis speed than I was used to. It didnt agree with me. Now Ive
learned to tell the staff how fast I should be dialyzed when I go to a
new clinic.
What role can a travel companion play in relieving the patients
anxieties?
Margie: Im very aware when we travel that Dan gets nervous. So
I try to make his transition to a new place easier. Ill usually drive him
to the clinic and pick him up. I try to be a calm, condent voice. I tell
him it is going to be ne. I remind him of all the good experiences we
have had. And when I walk into a clinic, I am a friendly soul. I always
talk to the nurses and say Hi to the other patients. I try to break the
ice, warm up the place, so that Dan gets a nice welcome. I kid
around. Friday when I dropped him off I said Have a good suds! and
all the nurses smiled. Basically, I try to smooth the way.
Daniel: She does a very good job. She is an ambassador of good-
will.
Margie: I havent met a staff person who wasnt nice. When I
leave, I will always say, Take good care of my husband! Ill thank
people for all their good care. People need to be appreciated. And I
always, always smile. I never go into a clinic without a smile. I am
very aware when I walk into a dialysis clinic that everyone there is
ghting a battle.
Have you ever traveled on your own? If so, were you more nervous be-
ing alone?
Daniel: Not really, because I traveled to places where my children
or family lived so I knew I had support if I needed it. I went once to
Israel by myself and once to California. I wasnt worried either time.

I think it would have been more difcult if Id gone to a place where
I hadnt known anybody.
Do you know other patients who travel?
Daniel: Sure. Many patients travel. For example, there was a very
gregarious, big fellow at my old clinic and his favorite summer pastime
had always been shing. When he rst went on dialysis he thought he
couldnt go shing anymore and he was terribly upset. The people in
the clinic told him, There is no reason you cant go shing! So he re-
luctantly and very nervously made plans to go to northern Wisconsin.
He went for a week. When he returned he showed us all photos of the
sh he caught. He was so incredibly happy. Every year thereafter he
would take a shing trip.
Daniel tells Susan that the most popular sites among fellow pa-
tients are Las Vegas, the Caribbean, Florida, and Alaska. Many dial-
ysis patients travel for family occasions such as weddings, funerals,
and baptisms. Even the patients who dont particularly like to travel
will still make a big effort if there is a special occasion. He has known
college students who traveled on spring break in Florida, an elderly
couple who spent several weeks at a summer cottage in Michigan,
and a retired businessman who returned to his native city of Bel-
grade for a month every year.
What advice would you give to someone who hasnt yet traveled while
on dialysis?
Daniel: My rst piece of advice would be to get the initial anxi-
ety out of your system. You will always have a little anxiety, but rst
you have to remove the big anxiety. Start with a short trip. Every-
thing will go well, and then you can try a trip farther away. My sec-
ond piece of advice would be that even if you dont have much
money, travel. Go someplace inexpensive for a long weekend. Look
around at the scenery and take a minute to think to yourself, Wow,
look where I am. What an incredible experience. Travel enriches
life. I know that there are people who are really too sick to travel. Im
not recommending they travel. Rather, the persons who are rela-
tively well, who are working and are leading a fairly normal life, they
should travel.
How do clinics abroad differ from those in the United States?
Daniel: For the most part, dialysis is really a universal
treatmentalthough Ive noticed that clinics in other countries are
much more generous about providing food than those in the
United States. I couldnt believe in Argentina they gave us cookies,
juice, and cake! And in England they gave us an assortment of tea
sandwiches, tea, and cookies. Certainly the most fun that Ive ever
had at dialysis was in Israel. It is the only place in the world where
I really looked forward to going. The chairs are much closer to-
gether so people can play chess, checkers, or cards and they have
tremendous political arguments with each other. The time just flies
there!
Think back over the trips youve taken; what have been your favorites
and why?
Daniel: My favorite trip was the two-week cruise around Cape
Horn from Buenos Aires to Chile. I enjoyed the experience of being
on the sea a lot. When I rst went on dialysis I didnt know this was
possible. But I found out that most of the new, large boats offer
trips with dialysis on board. For me, sailing and being on a ship was
exhilarating.
Margie: If I had to choose one trip, Id say it has been this driving
trip to Fredricksburg, Texas, and the Hill Country. It was like the old
days when I was a child, and wed get in the car and go. This trip was
just the two of us, two kids on the road. But truthfully, for me, every
trip has been a favorite because taking a trip is like normality. You
dont let your illness own you. You are a person who just happens to
be on dialysis. Traveling is not like beating the system. Traveling is
like winning.
As the three sat together at Susans dining room table, they n-
ished their conversation and moved on to an even more important
topic of discussion: what to have for lunch. Susan turned off her
tape-recorder and put away her notes. While she did so, she felt
grateful that Daniel and Margie were willing to make the journey to
her hometown time and again. She reected on their adventure-
some, courageous spirits, which had willed them onward despite the
burdens of dialysis. Never before had Susan understood just how far
Daniel and Margie have traveled in the past seven years. They hadnt
simply crossed state lines and bodies of water; they had traversed
their fears. And as with many travels that span a divide, theirs had
transported them to an entirely new place.
Practical Suggestions for Travel

and Emergency Preparedness
while on Dialysis
The Fears That Ground Us

Daniel and many other dialysis patients do travel. In fact, so many
travel that a cottage industry of companies with expertise in dialysis
travel has emerged since the 1970s. Despite this, there are still many
dialysis patients who choose not to travel. The reasons for this are
varied. Some are simply too sick. Some may have never shown any
interest or desire to travel before they were on dialysis. Some dont
have the nancial means to travel. But we have found that the most
prevalent reason that dialysis patients dont travel is because they are
afraid. Here are the top ve travel fears that weve encountered:
1. When you show up to a new city, you might receive treatment
in a shabby-looking neighborhood. And a shabby-looking neigh-
borhood means that you wont get very good care.
2. The staff at a new clinic wont know what they are doing. They
wont know you very well and therefore you will not receive the
same level of care that you would get at your own clinic.
3. If you require urgent care in the case of an emergency you will

be far from your doctors and your dialysis center. You will be in
a bind.
4. When traveling you could possibly miss a ight due to bad
weather, terrorism, or other reasons and actually get waylaid in
another city without dialysis scheduled. Then what?
5. Actually locating and nding your way to a dialysis center in a
new city or town will be difcult and stressful.
These fears are all very reasonable. As Daniel said, he has these fears
every time he and Margie travel to a new place, but in reality these
anticipated problems rarely materialize. Lets address these fears one
at a time, explain what weve found to be the reality, and provide
some tips on how to make sure traveling is not unduly stressful for
you or a travel companion.
Facing Our Fears One by One

Fear Number 1: A shabby neighborhood will equal shabby care.
Ever hear the phrase you cant judge a book by its cover? This is
quite true of dialysis centers. They are rarely located in fancy parts of
town because of the high cost of real estate in these areas. Daniel
once dialyzed in the sub-basement of a very old and dingy building
in New York City. As he entered the building and descended to the
bowels of the earth, he seemed to be headed toward a wreck of a cen-
ter. As it turns out, the center, the staff, and his care were all rst
rate. You never know where you will land, but as you approach a
new clinic try to view your visit as an adventure.
Fear Number 2: The staff wont know you and so they wont be able
to provide the right or best kind of care.
As Daniel said, when you are new to a clinic as a traveler, the staff
makes an extra effort to treat you well. They are extremely kind. This
is true the world over. Also, it helps to be friendly and positive when
you walk into a new clinic. This air of friendliness in combination

with the staff s knowledge that you are nervous will result in their
willingness to bend over backward to put you at ease. In addition,
the social worker from your home clinic will, in advance, have faxed
detailed treatment instructions to the staff at the new dialysis
clinic. With these detailed directions on hand staff members are best
equipped to mimic the care you would otherwise receive at home.
Fear Number 3: What if something out of the ordinary occurs with

your health when you are far away? What then?
Well, the rst thing to remember is that any major metropolitan
area in the United States, and even much of the world, will have
competent hospitals and good doctors. Depending on your circum-
stances you may be more inclined to travel to places where you have
the security and comfort of knowing friends or family. That way, if a
crisis occurs, you know there is someone you can lean on for help or
for medical references. But what if you want to venture to a place
where you dont have friends or family? In that case, you may be a
little more comfortable having a travel companion, such as a friend,
sibling, spouse, or child, who can go with you. That way if you need
some extra care, you will have someone who can take charge or even
just hold your hand while you are not feeling well. For example,
when Daniel and Margie traveled to the Texas Hill Country they
were a little bit off the beaten path. But if anything went wrong,
Daniel had Margie as his backup.
Of course, if you are courageous enough you can step out on your
own, without a travel companion, to a place where you know no one,
and certainly many dialysis patients do. However, this will require
suspending your fears and having faith that in the case of an emer-
gency the people at the dialysis clinic will help you. Also make sure
that family and friends know your travel plans and that the dialysis
center has emergency contact names and numbers. The bottom line:
whether you are traveling solo or with a buddy, in a place where you
know somebody or nobody, you will need to gure out what your
comfort level is. Plus you may see your comfort level grow as you be-
come more accustomed to traveling. In the meantime, as you are
building up your courage you might want to do what Margie some-
times does when she gets nervous. She silently hums these lyrics from
The King and I: Whenever I feel afraid, I hold my head erect and
whistle a happy tune so no one will suspect Im afraid.
Fear Number 4: Travel hiccups such as ight cancellations or delays

will interfere with dialysis and ones ability to stay healthy.
An Egyptian gentleman, who dialyzed alongside Daniel on one of
the cruises, mentioned that he had been visiting his son in Phoenix
on September 11, 2001. At the time he was scheduled to return to his
home on the twelfth of the month. However, all the planes were
grounded for at least a week. He said the dialysis center in his sons
hometown was extremely helpful. They found him times to dialyze
until flights resumed after a week and he could fly home. The
point is, dont panic. Once you explain your situation, people will
help you. Once, Daniel and Margie were to take a return ight from
Austin to Chicago. They arrived at the airport to learn that all ights
to Chicago had been cancelled due to poor weather. It was a Sunday
night and Daniel was scheduled to dialyze the next day. They ex-
plained to the staff his situation and were told they could either y
to Wisconsin and drive to Chicago that evening or take the rst
ight out in the morning. Of course, Daniel and Margie worried
what if the ight is canceled tomorrow, what then? but then they
realized Daniel would be OK. If Daniel had to dialyze in Austin one
more day, they were certain the center would not leave him high and
dry. A center in town would nd a place for him. As it turned out,
the plane left the next morning as scheduled and Daniel dialyzed in
his home center that afternoon.
Similarly when a ight from Boston to Chicago was overbooked,
Daniel and Margie were told they had been bumped off the ight.
They explained Daniels medical issues and were assured that he (al-
though not Margie) would receive a seat. In that instance they asked
immediately to speak to a manager. Their advice: if a travel crisis
arises always stay calm, be nice, and if at all possible talk to whoever
is in charge. As it turned out, they both made it on the ight.
Fear Number 5: You wont be able to nd your way to a new center.

You are on dialysis; you arent brain dead. You can ask for direc-
tions and for help. If you are staying with family ask them to explain
to you how to get from their home to the clinic, or to go with you if
possible. If you are staying in a hotel ask an employee at the desk to
help you arrange transportation and determine how long it may take
to arrive or the best route to take.
Remember, every single time Daniel visits a new place and a new
clinic he is scared and anxious before his rst treatment. Until he
nds his way and arrives at the dialysis center he thinks maybe he
will get lost or maybe it wont be as nice as home. And every time, as
soon as he arrives at the clinic and begins to receive care he doesnt
know what he ever worried about. Margie uses humor to ease his
fears and reminds him that they are on an adventure. Time and
again his anxiety passes. Should you venture out, likely you will ex-
perience these same feelings, but remember many others have been
there and done that. Take a deep breath and tell yourself you can do
it too.
What to Know before You Go: Take Baby

Steps First
Now that you have acknowledged your fears and have decided to
get past them, what next? What do you need to do to begin travel-
ing? First of all, start out slow and easy. One doctor told us that he
tries to get all of his patients to start out by going away for a single
night. He tells them not to worry about dialyzing away from home
the first time they venture out. For many, just getting in a car and
driving out of the area elicits a certain amount of anxiety. Once

youve accomplished this, try dialyzing away from home. Perhaps
go away for a long weekend where you have to dialyze only once. If
possible, try visiting a place where you have friends or family.
Then, if you are feeling increasingly comfortable, go away for sev-
eral days. If you can afford it, perhaps even fly to a different desti-
nation and have several treatments away from home. With each
trip you take your confidence in yourself and others will likely
increase.
Travel on Peritoneal Dialysis, Home

Hemodialysis, or while Awaiting Transplant
Daniel and Margie spoke from personal experience about travel
while on hemodialysis. However, you can travel just as easily if you
are on home hemodialysis or if you are awaiting a transplant. And if
you are on peritoneal dialysis, travel is even easier in the sense that
you dont have to plan your travels around visits to a center. Regard-
less of modality, you will just need to plan your travels accordingly.
For those who are on home hemodialysis they will in most cases
need to schedule in-center dialysis for the duration of their trip.
There are instances of patients who have traveled with their own
equipment by recreational vehicles (RVs) and have dialyzed at camp-
sites with hook-ups for electricity. If you do not plan on dialyzing at
a center, you should still contact a center before your trip and upon
arrival so that they can be available to you for assistance if any issues
or emergencies arise.
As we saw with Elena, a PD veteran in Chapter 3, you can ab-
solutely travel while on PD. However, you will need to plan to have
enough supplies for the duration of your trip. Depending on the
length of your trip you may be able to take supplies with you or have
them delivered to your destination in advance. If you are traveling
within the United States, you need to arrange for delivery of supplies
two to four weeks in advance. Check directly with your supplier
regarding how much time they require. Outside of the United States
you will need six to eight weeks advance notice. Before leaving on
your trip, call your destination to ensure that any supplies you have
ordered for delivery have arrived. If using CAPD, you will need to
account for a clean space where you can do your exchanges while
traveling. If you are using CCPD, there are relatively small machines
in existence that can be carried onto airplanes and used in hotel
rooms or RVs. And again, even if you do not plan on stepping foot
inside a dialysis clinic, you should still make arrangements with a lo-
cal clinic to provide backup in the event of an emergency while you
are away. Your social worker can help you to provide them with the
necessary medical documentation or you may carry it with you.
Last, if you are awaiting a transplant you may also travel. How-
ever, you should rst consult your transplant coordinator about any
travel plans. Depending on your destination, you will either put
yourself on hold temporarily while you are out of town, or you will
provide a method of contact should you be close enough to return in
time should an organ become available. In reality we nd that many
patients, as they get closer to the top of the transplant list, can still
travel but often choose not to.
Plan Ahead
If you plan on traveling, the social worker at your clinic will become
extremely important to you in the planning process. When you rst
start mapping out your trip, youll need to provide your social
worker with your itinerary. If there are several possible dialysis loca-
tions in the city, you may want to do a little bit of the legwork by go-
ing on the Internet and nding which one is closest to where youll
be staying. As a visiting patient you dont usually have much say over
where or what times you receive your treatment. Basically, you take
what you can get. However, if a specic time of day or a specic
clinic is preferred, let the social worker know. That way he or she is
aware of your preferences and can try to accommodate them.
The social worker then faxes all of your medical documentation

(including recent lab results, electrocardiogram [EKG], chest x-ray,
dialysis prescription, recent treatment records, etc.) in advance to
clinics in the area of your destination and works to secure your dial-
ysis schedule. These away clinics then inform your social worker if
they can accept you depending on their availability. Typically you
will need to work with your social worker no more than three
months and no less than six to eight weeks in advance to schedule
your dialysis. However, do inquire directly with your social worker
as to how much advanced notice he or she suggests. Clinics in very
popular vacation destinations during high travel seasons may be
hard to get into. Before buying those nonrefundable airline tickets to
Florida in January speak to your social worker. After researching, he
or she may give you the green light. Alternatively, he or she may ad-
vise you to switch your itinerary or at the very least pay a little extra
for the refundable tickets.
Get There Fast: Traveling for Emergencies

When Daniels mother died, he needed to y to Israel at a moments
notice to attend the funeral. Despite the lack of planning and lead
time, the social worker was able to schedule dialysis treatments for
him. Many dialysis centers will work very hard to accommodate pa-
tients in the event of a serious family emergency. Typically though, if
you want to ensure that you have a dialysis spot and that you stay in
the good graces of your social worker, you should plan nonemer-
gency trips well in advance.
Learn the Financial Rules of the Road

Medicare covers 80% of the costs of dialysis while traveling in the
United States. It does not cover any costs of dialysis outside the
country. If you want to travel abroad or receive coverage for the
20% of in-state travel not covered by Medicare, you will need to
procure a secondary insurance plan to pay for your dialysis
sessions. One session itself can be in excess of several hundred dol-

lars. Also many insurance plans require that you pay for the session
up front and they will then reimburse you at a later date. You will
need to determine how your insurance plan works, how much
money you will have to pay up front, and how long it will take for
you to be reimbursed. Daniel and Margie have always been reim-
bursed, but they have had to wait several months to receive pay-
ments. Medicaid will cover dialysis sessions only in the state where
you live.
Hit the Road, Jack

For those who cant afford to y, a driving trip may be just the ticket.
You can cover a lot of ground and visit many interesting places in the
United States. You will just need to plan your itinerary so that you
are near a dialysis facility on the days that you will dialyze. One so-
cial worker we met with had scheduled dialysis for a patient who
took a two-week driving trip the length of California. The social
worker said it was fun to strategize and help with the dialysis plan-
ning portion of the trip. She worked to match the patients wish list
of destinations with a realistic timeline and itinerary that would land
her at dialysis clinics in the right places at the right times. Remember
that there are dialysis centers all over the country. However, some ru-
ral or out-of-the-way spots may not have a center nearby, but a little
research and thoughtful scheduling can still make for a very enjoy-
able scenic tour.
Join the Crowd

There are many vacation packages that involve tours, and as individ-
uals get older, many times they are more comfortable traveling in a
group. This holds true for singles as well. You may be able to take an
organized tour and opt out of the group activities during the times
or days that you have to dialyze. One physician told us of a patient
he treated who had loved to travel on tours prior to starting dialysis.
Afterward the patient desperately wanted to travel but was extremely

self-conscious about her health and didnt want anyone to know that
she was on dialysis. Her doctor was eventually able to convince her
that the other participants on a tour wouldnt treat her oddly. As it
turned out, the physician was right. The patient successfully over-
came her inhibitions, resumed her travels, and although she had to
sit out a few of the sights she no longer felt abnormal and unable to
satisfy her love of travel.
Dialyze at Sea
As Daniel mentioned, there are many opportunities to dialyze on
board major cruise lines. Dialysis usually takes place while you are
at sea so that you can explore the ports of call. There is a nephrol-
ogist on board and on call for the entire voyage. Dialysis at sea al-
lowed Daniel to travel to exotic destinations while dialyzing from
a comfortable home base. He never had to be concerned about lo-
cating the dialysis center. He simply had to leave his room and
walk down several corridors of the ship! Below are a couple of
the companies weve come across that specialize in dialysis travel
at sea:
Dialysis at Sea
www.DialysisatSea.com
Telephone in the United States and Canada: 1-800-544-7604
International: 01-101-727-518-7311
Dialysis on Demand Inc. Dialysis Dreams
www.dialysisdreams.com
Telephone: 1-954-527-3852
When in Doubt, Buy Insurance

A few years ago Daniel and Margie learned of a program, MedjetAs-
sist, that provides them with some additional peace of mind while
traveling. If you are younger than seventy-ve years of age, for a fee
you can become a MedjetAssist member. As a member, if you are

hospitalized outside of a 150-mile radius of your home, MedjetAssist
will y you to a hospital of your choice at no charge in a medically
equipped and staffed aircraft. For those who purchase this service,
MedjetAssist essentially works as an insurance policy. Fortunately
Daniel and Margie have never had to use their services, but it has
given them a sense of comfort to know they have a quick exit strat-
egy if a serious crisis were to occur far from the comfort of their
home and their doctors.
Additional information on MedjetAssistance is available at
www.MedJetAssistance.com
[email protected]
1-800-963-3538
While Daniel is optimistic about life and traveling, he is also real-
istic about the precarious nature of his health. For this reason, over
the years if he and Margie are planning to take a big trip that in-
volves a signicant chunk of change, they will purchase travel insur-
ance in advance. This way, if for some reason his or her health is
compromised before they are scheduled to leave, they will only have
to deal with the disappointment of missing out on the travel as op-
posed to the distress over losing money on airline tickets and hotel
reservations that were left unused.
Think about Time Zones

Should you be traveling to or from home between dialysis sessions you
may have to take into account time differences when calculating the
time between sessions. For example, Daniel dialyzed on a Friday morn-
ing in Italy and was then scheduled to dialyze in Chicago on a Monday
afternoon. Typically the longest Daniel would go between sessions was
seventy-two hours. However, he realized Sunday night that it would be
approximately eighty-six hours between sessions when the time change
was accounted for. That same night he began feeling overly bloated and
his breathing was becoming more labored. He called his home clinic
and asked if he could move his dialysis earlier in the day on Monday.
They were able to t him in. Now he has learned that if he is in a sim-
ilar situation in the future he will request an earlier session in advance.
Navigate the Language Divide

You may be worried about traveling to a country where you dont
speak the language. Daniel has found that when he has traveled to
another country there is always at least one person at the clinic
who speaks English fairly well. That person informally becomes his
ambassador at the clinic. To date, language has never been a prob-
lem for Margie or Daniel. If you are concerned, you may want to
find someone at home or in your country of destination who
can translate well. In the worst-case scenario, you can then pick
up the phone and call your designated translator for some quick
assistance.
What to Know for Transit: Carry Your Medical

History, Medications, and Supplies
Daniel has learned to take his documented complete medical history
with him whenever he travels. In the event that he needs to visit a
hospital he can easily hand the physicians his medical prole. This
document lists the following:
Dates and durations of any past illnesses, surgeries, or fractures
Current prescriptions and over-the-counter medications he is
taking and their dosages
Any allergies he has
Names and telephone numbers of his dialysis clinic, his nephrol-
ogist, and all other specialists
Parental medical history
The benet of having this information typed up and on hand is

that in the heat of a possibly stressful situation he and Margie do not
have to rely on their ability to accurately recall all the pertinent de-
tails. They can instead rely on their cheat sheet to give the doctors
a quick and accurate prole that can be used to provide the best pos-
sible care. It is not common that theyve had to use this information
when traveling.
In addition to these medical records, Daniel and Margie always
pack the following supplies as a just-in-case measure should the ac-
cess not coagulate:
Scissors
Gauze pads
Tape
Band-Aids
Cortisporin or Bacitracin
Latex gloves
Thermometer
Daniel and Margie always carry their medications with them, in-
cluding extra medications should their trip be extended for some un-
foreseen reason. At the time of writing this book, security measures
taken by major airlines were subject to change in response to the on-
going level of threat of terrorism. While wed advise you to carry all
critical medical equipment, medication, and medical documents on-
board and with you at all times, we recommend that you nd out
the latest rules and regulations regarding carry-on items. By the time
you are reading this, they may have changed or they may require you
to gather specic documentation in advance.
As mentioned earlier articial erythropoietin helps dialysis pa-
tients ward off anemia. In the United States, this is an expensive
drug, which is covered by Medicare. Outside of the United States it
is not included in the cost of the treatment. If you plan to travel

abroad you will need to purchase the drug in advance and carry it
with you. In addition, it will need to be kept refrigerated. A black
market exists for this medication. On the cruise, Daniel was told not
to leave it in the refrigerator in his state room. Instead, the clinic
asked him to bring it to them where they kept it refrigerated and un-
der lock and key. When you are ying, you should pack the medica-
tion in a small insulated sack with ice or an icepack. If you have a
long plane ride you may ask the stewardess for fresh ice midway
through the ight. When Daniel and Margie arrive at the clinic for
his rst session, they bring his medicine with them and simply ask
the staff to store it there for the duration of his stay. When he has the
nal session at that clinic he takes whatever medication remains
home or to his next destination.
What to Know When You Arrive: Be Responsible

for Your Care
On occasion Daniel and Margie have encountered scheduling mix-
ups. For example, they have been given the wrong address for the
clinic or the incorrect dialysis time. This is why it is critical whenever
you arrive in your new destination to call the center to conrm the
address and the treatment schedule. Also, before leaving for a trip,
Daniel receives copies of the records of his last three treatments. He
carries these with him and gives them to the head nurse when he en-
ters the new clinic. The staff can then see how his recent treatments
have gone, and this helps them to set up for the session. As he men-
tioned earlier, Daniel has learned on arriving at a new clinic always
to tell the staff his dry weight, his blood pressure, how long he typi-
cally dialyzes, and the speed at which he dialyzes.
Account for Time

The longest that Daniel and Margie have ever traveled at one time
was three weeks. However, if you are planning to travel longer you
should arrange to have your blood chemistry checked at some point

while you are on the road. This is important to ensure that you are
still receiving the right dialysis prescription, as your chemistry may
uctuate over time.
What to Know When Staying Put:

Plan for Emergencies
Travel in itself implies a visit to the unknown, someplace new. Truth-
fully, any adventure may result in the unexpected. In fact, even if you
stay home, an adventure, usually the unwelcome kind, may actually
come to you. Severe weather or a disaster may put you in a situation
where you need to think on your feet. Extreme situations may make
self-dialysis or travel anywhere, even to your regular center, impossi-
ble. Being prepared for such a situation will help minimize your wor-
ries, stay calm, andin the event of a real emergencykeep you
healthier until you can resume your normal treatment. To this end, the
Centers for Medicare and Medicaid Services have created Preparing
for Emergencies: A Guide for People on Dialysis. The guide includes
information on what to do in an emergency; travel tips; steps to pre-
pare for an emergency, including an emergency food and supplies list
and an emergency diet plan for three days; how to disinfect water; and
how to get off a machine during an emergency evacuation. We cer-
tainly hope you never have such an adventure reach your doorstep, but
if it does, you now know of an excellent resource that can help you
prepare. You can request a free copy of this useful booklet at the ad-
dress below:
1-800-Medicare
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244-1850
www.Medicare.gov
And should you be very worried about the threat of a disaster and
managing dialysis in its midst you will be comforted to hear that when
Hurricane Katrina hit the Gulf Coast in 2005, every single one of the
dialysis patients was successfully triaged and cared for at alternative
centers. We spoke with the director of the largest dialysis center in
Houston who explained to us that many dialysis centers surrounding
the areas damaged by the storm provided around-the-clock care. If
needed, centers would have shifts in the middle of the night. Initially,
some individuals had to wait a day or two longer than usual to receive
care, but ultimately everyone was accounted for and all those who were
uprooted found temporary or permanent new clinics to call home.
All Systems Go
Whether you are contemplating emergency preparedness or your
dream vacation, life as a dialysis patient very much revolves around
planning. Now it is time to make a plan. If you never cared in the
least bit for travel before you went on dialysis, we dont expect you
to put down this book and immediately call your travel agent. But
if you have an adventurous soul or a yen for travel, then just be-
cause a piece of your body doesnt work properly doesnt mean you
have to stifle your desires to meet new people and see new sights.
And if you are on hemodialysis, you now have the opportunity to
have a birds-eye view into a world that most tourists never see! You
can meet and speak to people at your destination clinics that you
never would have met. Most run-of-the-mill tourists dont have
such a sure-fire way to meet locals, but you have an automatic en-
tre to the natives. Regardless of whether you do self-dialysis or in-
center dialysis, travel is a wonderful, healthy form of escapism and
even though your baggage (literally and figuratively) will follow
you wherever you go, you can lighten your load by taking the leap.
Afterword
nd so we arrive at the end of the book with a few parting

A thoughts wed like to share. As we mentioned earlier, according
to the National Kidney Foundation one out of every nine people in
the United States is affected by kidney disease. This statistic does not
mean that these affected individuals will all eventually be on dialysis,
but it does mean that kidney disease is not nearly as rare as most
people think. And although this book is not preventive in nature
and we are primarily addressing many individuals who already nd
themselves on dialysis, we would like to do our part to inuence the
family members of dialysis patients and anyone who is not already
on dialysis to periodically have their GFR levels checked as a mea-
surement of their kidney function. We would encourage everyone to
know their GFR levels and to take their physicians recommended
steps to prevent a signicant decline of kidney function. In many
cases, if caught early enough, renal failure can be prevented or at the
very least slowed. Ideally, some day the rates of individuals undergo-
ing dialysis annually will be on the decline instead of the rise and the
audience for a book like this will diminish in size.
For those individuals who are already on dialysis, we commend
you for what you do to stay alive. We know that it is not easy. You
endure much. But we also know that, like ours, your families and
loved ones are very appreciative of the many moments, conversa-
tions, and memories shared with you that they might otherwise not
Afterword 229
have had. If knowing that is sometimes not enough to bolster your

resolve, you may have to rely on special occasions to keep you on
track and motivated to put up with dialysis. And what it takes to get
you to those milestones or celebrations will certainly take a backseat
to the joy of the moment.
Appendix A
Glossary of Terms
AccessGeneral term used to describe the site where the blood will enter and exit
your body during hemodialysis. Also commonly referred to as lifeline. Tempo-
rary accesses are typically used short term whereas permanent accesses are used
long term.
Arteriovenous (AV) stulaA type of permanent access used for hemodialysis
surgically created by attaching a vein directly to an artery.
Arteriovenous (AV) graftA type of permanent access used for hemodialysis sur-
gically created by attaching an artery indirectly to a vein using a small plastic
tube.
AnemiaA decrease in the amount of red blood cells that are needed to carry
enough oxygen to meet the bodys needs. Healthy kidneys produce the hor-
mones needed to create red blood cells. Chronic kidney failure can cause ane-
mia. Symptoms of anemia include lethargy, lack of appetite, and shortness of
breath.
Blood urea nitrogen (BUN)A measure of the waste product of protein metabo-
lism. Its removal is a marker of the efciency of dialysis.
CalciumA mineral that is important for strong bones.
CatheterA exible hollow tube that is inserted into and juts out from the pa-
tients body. Catheters are sometimes used as temporary accesses for hemodialy-
sis and are the main conduit for PD exchanges to the abdomen.
Chronic kidney diseaseThe term used to generically describe conditions that
damage your kidneys and decrease their ability to function properly.
Chronic renal failureCondition in which the kidneys fail permanently. The
nonworking kidneys cannot function again as in acute renal failure, which can
be reversed.
232 Appendix A
Continuous ambulatory peritoneal dialysis (CAPD)A form of peritoneal dial-

ysis that involves several manual exchanges daily. No machine is used.
Continuous cycling peritoneal dialysis (CCPD)A form of peritoneal dialysis
that involves continuous mechanized exchanges nightly and a possible manual
exchange daily. Also sometimes referred to as ambulatory peritoneal dialysis
(APD).
CreatinineA substance produced by the muscles and used to detect kidney
failure.
CyclerThe machine that is used to mechanically perform CCPD exchanges
overnight.
DiabetesA condition characterized by high blood sugar resulting from the bodys
inability to use sugar efciently. Diabetes can cause kidney failure.
DialysateThe cleansing solution that is used in the dialyzer or in the peritoneum
to remove the excess uid and toxins from the blood. This special mixture of
chemicals and water allows for the removal of certain chemicals from the blood
and addition of certain chemicals to the blood.
DialysisThe process of cleaning wastes from the blood articially.
DialyzerA part of the hemodialysis machine that acts as an articial kidney re-
moving excess uids and toxins from the blood.
EdemaSwelling caused by an excess buildup of uids in the body.
End-stage renal disease (ESRD)A term often used by the medical industry to
signify diminished kidney function to the point that an individual must either
receive dialysis or a transplant in order to live.
EndocrinologistA physician who specializes in the care and treatment of the en-
docrine system, which is the bodys system of glands and hormones.
Epogen (EPO)A man-made pharmaceutical substitute for erythropoietin.
ErythropoietinA hormone that healthy kidneys create that signals the produc-
tion of red blood cells. It is now articially manufactured by the pharmaceutical
industry under several trademarked names.
ExchangeThe process of peritoneal dialysis consisting of the ll, the dwell, and
the drain. First the abdomen is lled with uid, the abdomen retains the uid
for a period of time, and the abdomen is drained of uid. The complete process
is called an exchange.
Glomerular ltration rate (GFR)A measurement that determines the health of
a kidney. Measured as a percentage, the estimated GFR is the amount of kidney
functionality that remains. A GFR of 15% or less means that a person requires
dialysis or transplantation to live.
Glossary of Terms 233
GlomerulonephritisA disease resulting from an inammation of the kidney that

destroys kidney tissue.
HemodialysisA treatment process that removes the blood from the body and
cleanses it of excess uids and impurities using a lter called a dialyzer.
HypertensionA disorder in which blood pressure remains abnormally high.
ImmunosuppressantDrugs given to suppress the natural responses of the bodys
immune system. They are given to people with transplants to prevent organ
rejection.
IronA mineral found in bone marrow necessary for the production of hemoglo-
bin, the oxygen-carrying component in red blood cells. Eating iron-rich foods
and taking iron supplements can help prevent anemia.
KidneysA pair of organs located near the middle of the back that lter and remove
excess uid and toxic impurities from the blood, produce hormones needed to
control blood pressure and create red blood cells, and balance the level of minerals
and chemicals in the body such as sodium, potassium, calcium, and phosphorus.
Living nonrelated donorAn individual who is willing to donate a kidney but is
not related by blood to the patient in need.
Living related donorAn individual who is willing to donate a kidney and is re-
lated to the person needing it.
ModalityForm of treatment. Different forms of treatment for nonfunctioning
kidneys include transplantation, hemodialysis, and peritoneal dialysis.
Nephrologist: A physician who specializes in the care and study of kidneys, their
function, and the diseases associated with them.
Peritoneal cavity: The space in the abdomen that, in peritoneal dialysis, contains
the diasylate and removes unhealthy toxins and uids from the blood.
Peritoneal dialysis (PD): A type of dialysis that uses the peritoneal cavity and
dialysate to cleanse the blood of impurities and excess uid without removing it
from the body.
Peritoneal membraneThe lining of the abdominal cavity resembling cellophane
with tiny holes that is used to sift out excess uids and harmful toxins during an
exchange.
PeritonitisAn infection of the abdomen sometimes associated with peritoneal
dialysis.
PhosphorusA substance found in many of the foods that we eat. Healthy kid-
neys work to monitor the balance of phosphorus levels in the body so that they
are neither too low nor too high. Too much phosphorus can cause calcium to be
removed from your bones, which weakens them.
234 Appendix A
Phosphorus bindersMedications that prevent phosphorus we eat from being ab-

sorbed into the blood.
Polycystic kidney diseaseAn inherited disease characterized by the buildup of
cysts on the kidneys that destroy kidney tissue and can cause kidney failure.
PotassiumA mineral in your blood that helps your heart and muscles work prop-
erly. Healthy kidneys work to balance potassium levels in the body so that they
are neither too low nor too high.
RenalRelating to the kidneys.
ReuseA procedure in hemodialysis in which the dialyzer is cleaned and tested af-
ter each session before being reused by the same patient for the next session. The
clean dialyzer is reused with the same person only.
TransplantationThe surgical procedure of placing a kidney from a donor into a
recipient. There are three types of donations: cadaver, living-related, and living
nonrelated.
Ultraltration rateThe rate at which liquid and impurities move out of the
bloodstream during hemodialysis.
UreaA waste product that the body makes when protein is broken down. The
rate of urea removal from the blood by dialysis is a measure of how the dialysis
treatment is working.
UremiaThe condition when waste products that are normally removed by the
kidneys build up in the blood, leading to symptoms such as poor appetite, nau-
sea, vomiting, itching, fatigue, and confusion.
UrineLiquid waste product ltered from the blood by the kidneys.
UrologistA surgeon who specializes in the diagnosis and treatment of diseases of
the urinary tract and urogenital system.
Vascular surgeonA surgeon who specializes in the diagnosis and treatment of
disorders of arteries and veins. This physician performs the operation to create
an access.
Appendix B
Helpful Resources
Listed below are just a handful of the resources currently available to aid renal care
patients and their family members. These are the resources that weve found to be
particularly helpful and will likely be a good starting point for you as you seek out
additional information.
General Educational Resources
American Association of Kidney Patients (AAKP)

3505 E. Frontage Rd., Ste. 315
Tampa, FL 33607-1796
1-800-749-2257
www.aakp.org
AAKP has twelve chapters nationwide and 12,000 members. This organization has a
wealth of materials including newsletters, booklets, brochures, and magazines avail-
able on all topics pertaining to kidney disease.
Davita Patient Citizens

www.dialysispatients.org
Educational website sponsored by DaVita Inc., the largest independent provider of
dialysis centers in the United States.
End Stage Renal Disease Networks

Eighteen regional networks each covering a different part of the United States. To
receive information about your regional network contact:
236 Appendix B
1527 Huguenot Road

Midlothian, Virginia 23113
1-804-794-2586
www.esrdnetworks.org
These networks were created to act as the liaison between the federal Health Care
Finance Administration and the providers of dialysis and transplantation services.
Each network provides patient services and education.
Home Dialysis Central

www.homedialysis.org
This website includes descriptions of existing types of peritoneal and home he-
modialysis, success stories, discussion boards, listings of centers that offer home
dialysis, information on pending legislation, updates on new home dialysis technol-
ogy, and Medicare reimbursement information.
Kidney Options
www.kidneyoptions.com
Educational website sponsored by Fresenius Medical Care North America. Frese-
nius Medical Care is the worlds largest provider of dialysis products and services.
Kidney School
www.kidneyschool.org
Interactive web-based learning program in twenty-minute modules designed to help
educate kidney patients so that they can take a more active role in their health care.
Life Options
c/o Medical Education Institute, Inc.
414 DOnofrio Drive Suite 200
Madison, WI 53719
1-800-468-7777
www.lifeoptions.org
This organization has developed an abundance of useful materials on how to live
well with kidney disease.
The National Kidney Foundation (NKF)

30 East 33rd Street
New York, NY 10016
1-800-622-9010
www.kidney.org
Helpful Resources 237
NKF has a wealth of materials including newsletters, booklets, brochures, and mag-
azines available on all topics pertaining to kidney disease.
The National Alliance for Caregiving (NAC)

4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
www.caregiving.org
The NAC is a nonprot coalition of national organizations focusing on issues of
family caregiving. The organization has publications, tips, and guides for caregivers.
The Organ Procurement and Transplantation Network (OPTN)

www.optn.org
A real-time UNOS (see below) run website which provides OPTN data including
organ procurement waitlists and to-date transplants in the United States.
Transplant Living
www.transplantliving.org
A website operated by the United Network for Organ Sharing (UNOS) that pro-
vides transplant information, resources, and tools for patients, families, and friends.
United Network for Organ Sharing (UNOS)

Post Ofce Box 2484
Richmond, Virginia 23218
1-888-894-6361
www.unos.org
A nonprot, scientic, and educational organization that administers the Organ
Procurement and Transplantation Network, a unied network linking all profes-
sionals involved in organ transplantation; facilitates organ matching and donation;
collects data about every transplant occurring in the United States; and works to de-
velop organ donation and transplantation policies.
Travel Resources
Dialysis at Sea
13555 Automobile Blvd, Suite 220
Clearwater, FL 33762
1-800-544-7604
www.dialysisatsea.com
The largest worldwide provider of dialysis services aboard cruise ships.
238 Appendix B
Dialysis on Demand Inc.

3200 So. Andrews Ave., Suite #115
Ft. Lauderdale, FL. 33316-4122
1-954-527-3852
www.dialysisdreams.com
Company specializing in dialysis cruises.
Easter Seals Project Action

1425 K Street, NW, Suite 200
Washington, DC 20005
1-800-659-6428
TTD for hearing impaired: 202-347-7385
www.projectaction.org
Can provide a list of accessible transportation services in the United States for peo-
ple with disabilities.
Global Dialysis
www.globaldialysis.com
A website created to aid dialysis travelers in locating dialysis centers around the
globe. Includes a database of centers as well as resources and information pertaining
to dialysis and travel.
MedjetAssistance
Birmingham International Airport
4900 69th Street North
Birmingham, Alabama 35206
1-800-963-3538
www.medjetassistance.com
Provider of annual membership plans, similar to an insurance plan, that would
cover the costs of an emergency medical evacuation from anywhere in the world to
a hospital of your choice.
Professional and Financial Resources
ADA & IT Technical Assistance Centers

For your local center call or visit the web at
1-800-949-4232
www.adata.org
Provides information about the network of Disability Business Technical Assistance

Centers (DBTACs) throughout the United States that exist for the use of individu-
als covered under the Americans with Disabilities Act. These centers provide a vari-
ety of training, technical, advisory, and educational services.
American Kidney Fund

www.kidneyfund.org
1-800-638-8299
The leading source of direct nancial aid to chronic kidney disease patients in the
United States.
Centers for Medicare and Medicaid Services

7500 Security Boulevard Baltimore, MD 21244
Toll-Free: 1-877-267-232
www.cms.hhs.gov
Information pertaining to both Medicare and Medicaid services. However, if you
have inquiries specically about Medicare you should start at the Medicare-specic
website and 1-800-MEDICARE number listed below.
Kidney Drug Coverage

Kidney Medicare Drugs Awareness and Education Initiative
c/o National Kidney Foundation
30 East 33rd Street
New York, NY 10016
1-800-622-9010
www.kidneydrugcoverage.org
This initiative was created to provide timely, reliable, and up-to-date information
about Medicare drug coverage for kidney patients.
Medicare
1-800-MEDICARE (1-800-633-4227)
www.Medicare.gov
The ofcial U.S. government site for people with Medicare. Information, resources,
and tools pertaining to Medicare.
Partnership for Prescription Assistance

1-888-4PPA-NOW (1-888-477-2669)
www.pparx.org
A collaboration of companies, health care providers, and organizations to provide
low-cost or no-cost prescription drugs to patients in need. Contact them to learn
more about which programs you may qualify for.
240 Appendix B
RxAssist
www.rxassist.org
A comprehensive web directory of patient assistance programs run by pharmaceuti-
cal companies to provide low-cost or no-cost medications to patients in need.
United States Department of Labor Employee Benets Security Administration

Frances Perkins Building
200 Constitution Avenue, NW
Washington, DC 20210
1-866-444-3272
TTY: 1-877-889-5627
www.dol.gov/ebsa
This government entity can provide you with a great deal of information regarding
health care plans, benets, and rights under the Health Insurance Portability and
Accountability Act (HIPAA) and the Consolidated Omnibus Budget Reconcilia-
tion Act (COBRA).
United States Social Security Administration

Ofce of Public Inquiries
Windsor Park Building
6401 Security Blvd.
Baltimore, MD 21235
Toll Free: 1-800-772-1213
TTY: 1-800-325-0778
www.socialsecurity.gov
Can provide information on Social Security Disability Insurance and Supple-
mental Security Income. Can also refer you to your State Vocational Rehabilita-
tion ofce. For an online listing of these ofces visit www.jan.wvu.edu/sbses/
vocrehab.htm
United States Social Security AdministrationThe Work Site

www.ssa.gov/work
The website provides basic information about the Ticket to Work program that was
designed to help individuals who are receiving Social Security Disability benets re-
turn to work. For additional information about the Ticket to Work program visit
www.yourtickettowork.com or call 1-866-968-7842.
Legal Resources
Equal Employment Opportunity Commission

U.S. Equal Employment Opportunity Commission
P.O. Box 7033
Lawrence, Kansas 66044
Toll Free: 1-800-669-4000
TTY for hearing impaired: 1-800-669-6820
www.eeoc.gov
Can help individuals with facts and guidance related to antidiscrimination laws,
disability rights, and steps to le charges of discrimination.
Patient Advocate Foundation

1-800-532-5774
www.patientadvocate.org
A national nonprot organization that assists with mediation and advocacy when a
patients fair rights to care, nancial support, or employment are denied.
Books
Chronic Hemodialysis as a Way of Life

J.W. Czaczkes, Ph.D., M.D., and A. Kaplan De-Nour, M.D.
Brunner/Mazel Inc. 1978
Chronically Happy: Joyful Living in Spite of Chronic Illness

Lori Hartwell
Poetic Media Press, 2002
Cooking for David: A Culinary Dialysis Cookbook

Sara Coleman and Dorothy Gordon
Culinary Kidney Cooks; Spiral edition (July 2000)
www.culinarykidneycooks.com
Dialysis: An Unanticipated Journey. A Life Experience on Dialysis for 30+ Years

David L. Axtmann
Tucky Paws Publishing, 2001
242 Appendix B
Eating Well, Living Well with Kidney Disease:

Dietary Approaches to Healthy Living from the Sarah W. Stedman Center for Nutri-
tional Studies at Duke University Medical Center
Steve J. Schwab, M.D., and Dorothy W. Bartholomay, M.P.H., R.D.
Penguin Group, 1997
Heroes: 100 Stories of Living with Kidney Failure

Devon Philips, Editor
Grosvenor House Press Inc., 1998
Kidney Failure: The Facts

Stewart Cameron
Oxford University Press, 1996
When Your Kidneys Fail

Mickie Hall Faris, M.P.H., M.B.A.
National Kidney Foundation of Southern California, 1994
Journals, Magazines, and Newsletters
aakpRENALIFE
A publication of the American Association of Kidney Patients
[email protected]
1-800-749-2257
Published every other month; features a range of educational information for renal
patients.
Dialysis & Transplantation

Wiley Periodicals Inc.
www.interscience.wiley.com
1-201-748-5764
A monthly journal written for medical professionals in the eld of renal care. A bit
more medical and technical than other resources listed here. But if you happen to be
a medical professional on dialysis you may nd some of the articles very interesting.
Family Focus
1-800-622-9010
www.kidney.org
A Publication of the National Kidney Foundation

Published quarterly. Includes excellent stories, anecdotes, and helpful information
for renal care patients on all topics relevant to living with chronic kidney disease.
Kidney Beginnings: The Magazine

A Publication of the American Association of Kidney Patients
[email protected]
1-800-749-2257
Published quarterly; includes articles, news items, and features of interest to those at
risk or recently diagnosed with kidney disease.
Notes
Preface
1. Axtmann, Dialysis An Unanticipated Journey, 17.
Chapter One
1. National Kidney Foundation, www.kidney.org, 20 million Americans1 in 9
US adultshave CKD and another 20 million more are at increased risk. . . .
Nearly half of people with an advanced form of kidney disease do not know
they have weak or failing kidneys, according to recent research published in the
American Journal of Kidney Diseases, the ofcial journal of the National Kidney
Foundation.
2. Lopresi, At the Olympics, a Fathers Love Knows No Limits,
www.usatoday.com, August 20, 2004.
Chapter Three
1. Department of Health and Human Services, National Institutes of Health, Na-
tional Institute of Diabetes and Digestive and Kidney Diseases, Division of
Kidney Urologic and Hematologic Diseases. United States Renal Data System
2005 Annual Data Report: Atlas of End-Stage Renal Disease in the United States,
97.
Chapter Four
1. The Organ Procurement and Transplantation Network. www.optn.org, Kidney
Kaplan-Meier Graft Survival Rates for Transplants Performed: 19972004.
Search National Data, Survival, Kidney, Graft, by Age.
Kaplan-Meier Graft Survival Rates for Transplants Performed: 19972004.
Search National Data, Survival, Kidney, Graft, by Age.
246 Notes

Kaplan-Meier Graft Survival Rates for Transplants Performed: January 1, 1988
August, 31 2006. Search National Data, Transplant, Kidney, by Age.
100, 4.d.
One-year patient and graft survival rates have improved in the past eight
years . . . , 150.
August 31, 2006. Search National Data, Transplant, Kidney, by Donor Type.
7. The Organ Procurement and Transplantation Network. www.optn.org, Waiting
List Candidates as of Today.
August, 31 2006. Search National Data, Transplant, Kidney, by Donor Type.
Chapter Six
1. Riis, J., et al. Ignorance of Hedonic Adaptation to Hemodialysis: A Study Us-
ing Ecological Momentary Assessment, 39.
2. Watnick S., P. Kirwin., R. Mahnensmith, et al., The Prevalence and Treatment
of Depression among Patients Starting Dialysis, 105110.
Guzman, S. J., and Nicassio, P. M., The Contribution of Negative and Posi-
tive Illness Schemas to Depression in Patients with End-Stage Renal Disease,
517534.
Chapter Eight
1. United States Department of Justice Civil Rights Division, A Guide to Disabil-
ity Rights Laws, 1.
2. United States Department of Labor. www.dol.gov/esa, Compliance
AssistanceFamily Medical Leave Act (FMLA).
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Brassil, Donna F., RN, MA, CURN, and Jean H. Lewis, BSN, RN, CNP. Sexuality
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Cameron, Stewart. Kidney Failure: The Facts. New York: Oxford University Press,
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Czaczkes, J.W., PhD, MD, and A. Kaplan De-Nour, MD. Chronic Hemodialysis as
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Hall Faris, Mickie, MPH, MBA. When Your Kidneys Fail: The Easy-to-Use Resource
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Hartwell, Lori. Chronically Happy: Joyful Living in Spite of Chronic Illness. San
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National Kidney Foundation. www.kidney.org/atoz. A to Z Health Guide: Your
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National Kidney Foundation. About Chronic Kidney Disease: A Guide for Patients
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Index
AABD. See Aid to the Aged, Blind, and Articial kidney. See Dialyzer
Disabled Assumptions, 162
Abnormal occurrences, 4849 Attitudes, 115, 132, 186. See also Mood;
Access, 3, 15, 3336, 44, 65, 137, 148 Negativity; Positivity
clotting of, 38 AV stulas. See Arteriovenous stulas
nal check of, 38 AV grafts. See Arteriovenous grafts
infection of, 38
permanent, 3335, 53 Balancing function of kidneys, 31
temporary, 3334, 36 Best Companies to Work for in America, 172
Acquaintances, talking to, 15759 Binders, 52, 62, 202
ADA. See Americans with Disabilities Act Blood
Advocates, 20, 1045, 10811. See also clean, 44
Caregivers dirty, 44
Age, 8586. See also Elderly fear of, 123
Aid to the Aged, Blind, and Disabled ow rate of, 45
(AABD), 177 transfusions, 58
Airplanes, 62. See also Travel volume, 43, 4546
Alcohol abuse, 137 Blood pressure, 4446, 53, 81
American Association of Kidney Patients, 112 blood volume and, 4546
Americans with Disabilities Act (ADA), dialysates and, 6263
16667, 169 liquid retention and, 44
Anemia, 32, 58, 81, 163 liquid weight and, 42
Anesthesia Bones, 8, 52, 82, 90
general, 35 Breakdown, emotional, 115, 128
topical, 45 Brie cheese, 195
Anger, 12122, 12628, 134, 139
Anxiety, 1618, 12125, 132, 134, 144 Calcication, of heart, 52
about blood, 123 Calcium, 118, 188
about death, 123, 13940 Cannulation site, 45
about disasters, 124 CAPD. See Continuous ambulatory
about needles, 123 peritoneal dialysis
about unknown, 25, 27 Caregivers. See also Doctors; Family;
control, about losing, 124 Professionals; Spouse
nancial concerns and, 125 assisting, 15657
travel, 2078, 21213, 217 capability of, 20
Arteriovenous (AV) stulas, 15, 3435 caring for, 15254
Arteriovenous (AV) grafts, 15, 3435, 38, 53, independence of, 38
117 primary, 14043
252 Index
Caregivers (continued ) Dairy products, 62

respite care for, 130 Death, fear of, 123, 13940
who is, 14041 Denial, 11, 12122
Catheter, 36, 60, 6263, 66, 117, 138, 148 Depression, 115, 12122, 134, 139
CCPD. See Continuous cycling peritoneal coping with, 12526
dialysis fear and, 16
Centers for Medicare and Medicaid medications for, 132
Services, 226 symptoms of, 12526
Cheating, on diet, 18687, 195 Dextrose, 6263, 66
Cheese, 195 Diabetes, 53, 66, 7577, 116
Children Dialysate solutions, 62
adult, 154 Dialysis
having, 14950 after, 4850
impact on, 136, 13940 before, 3139
Choice, of patient, 99. See also Control benets of, 120, 164
Clean blood, 44 challenges of, 164
Cleanliness, 6667 complexity of, 3
Clinic. See Hemodialysis centers as difference, 173
Clotting, 38, 47 as disability, 160
Colleagues, talking with, 17375 during, 3947
Comfort, 152 fear of, 1618
of family, 5 focus on, 64
of patient, 37 identity and, 1718
Commission on human rights, 167 knowledge of, 12, 83, 134, 14345
Community length of session, 43
contribution to, 2324, 175 misperceptions about, 1028, 154, 161, 174
patients as, 69, 118, 151 orientation of, 2930
Comorbidity, 100 permanence of, 5
Companies, best, 17173 successful, 8, 5153, 64, 9697, 119, 164,
Continuous ambulatory peritoneal dialysis 18586
(CAPD), 60, 6465, 68, 71, 218 time spent on, 1415
Continuous cycling peritoneal dialysis transplantation and, 73
(CCPD), 60, 64, 66, 68, 218 transportation to, 3839
Contribution to community, 2324, 175 warning time before, 53, 75, 163
Control withdrawal from, 9899
of diet, 186 Dialysis at Sea, 221
fear of losing, 124 Dialysis on Demand Inc., Dialysis Dreams,
patients, 1921, 51, 64, 67, 152, 186 221
PD and, 67 Dialysis patient etiquette, 15455
Cooking, 151, 19495 Dialyzer, 33
Cooking for David: A Culinary Dialysis knowledge of, 2021
Cookbook, 194 liquid removal by, 43
Coronary bypass surgery, 98 reuse of, 47
Counselors. See Professional counselors space for, 7071
Cramping, 7, 70, 83, 11718, 202 technical manual for, 21
Crashing, 45 unhooking from, 47
Creatinine levels, 81 Diet, 20
Cruises, 207, 211, 221 cheating on, 18687, 195
Index 253
control of, 186 Edema, 32

cooking for, 151, 19495 Education, 5051, 5354. See also Knowledge
dieticians perspective on, 18487 Elderly, 23. See also Age
dining out on, 19193 Emergencies
family and, 186, 19091 preparedness for, 124, 22627
following, 51 traveling for, 219
hemodialysis and, 70, 184 Emla, 45
holidays and, 19394 Emotional breakdown, 115, 128
knowledge of, 1034 Emotional reactions. See Psychological
list of foods for, 189 impacts
motivation for, 18485 Employers
patients perspective on, 2023 best, 17173
PD and, 6265, 184 disclosure to prospective, 16870
restrictions, 32, 98, 118, 156, 18384, 187 End Stage Renal Disease (ESRD), 1213. See
89 also Kidney disease
shopping for, 151, 19495 End Stage Renal Disease (ESRD) networks,
Dietician, 197 110
perspective of, 18487 End-of-life issues, 101
role of, 1034 Erectile dysfunction (ED), 146. See also Sex
Dining out, 19193 life
Dirty blood, 44 Erythropoietin, 32, 52, 58
Disability ESRD. See End Stage Renal Disease
benets, 164 Exchange, 60, 66, 16970. See also
collecting, 17577, 178 Peritoneal dialysis
dialysis as, 160 Exercise, 18384
kidney disease as, 2324 buddy, 201
PD and, 67 cardiovascular, 201
rights and, 16667 mood and, 134
Disaster, 124, 22627 PD and, 66
Disclosure, to prospective employers, 168 practical recommendations for, 199202
70 weight training as, 201
Disinterest, 152
Divorce, 142 Faith, 116, 11920, 129, 133
Doctors. See also Nephrologist; Professionals Family, 11, 99
capabilities of, 20 comfort of, 5
modalities, consulting on, 55 crisis, 115
patients and, 100101 diet and, 186, 19091
transplantation, perspective on, 85 kidney donors from, 9293
trusting, 81 psychological impacts on, 11719, 121, 125,
Donors. See Kidney donors 127, 139
Driving trips, 220 rights of, 168
Drug abuse, 137 support of, 12931
Dry mouth, tips for, 19899 Family and Medical Leave Act (FMLA), 168
Dry weight, 4042, 11718 Fear, 1618, 144
Dwell, 60. See also Peritoneal dialysis of blood, 123
control, of losing, 124
Eating right. See diet of death, 123, 13940
ED. See Erectile dysfunction depression and, 16
254 Index
Fear (continued ) home nocturnal, 70

of disasters, 124 home short-daily, 70
of illness, 158 in-center, 6871, 171
of needles, 123 in-center nocturnal, 70
of travel, 2078, 21213, 217 PD v., 5557, 5861, 13738, 184
of unknown, 25, 27 schedule of, 1314, 30, 166, 169, 170
Fill, 60. See also Peritoneal dialysis Hemodialysis centers
Filtration by kidneys, 31 abroad, 211
Financial assistance, 164, 18182 away, 206, 211, 216, 219
Financial concerns, 160, 162 cleanliness of, 40
anxiety and, 125 inside of, 40
practicalities of, 17782 orientation of, 2930
transplantation and, 9091 personnel at, 6
travel and, 219 transportation to, 3839
Fistulas. See Arteriovenous stulas what to bring to, 3637
Flexible work schedules, 17071 Hispanic community, 20
Fluids. See Liquid Holidays, diet and, 19394
FMLA. See Family and Medical Leave Act Hope, false, 5
Food. See Diet Hormone production by kidneys, 31
Fortune, 172 Hormone replacement therapy, 147
Friends, 12931, 154 48
Hurricane Katrina, 227
Gastric bypass surgery, 6
GFR. See Glomerular ltration rate Identity
Gift giving, 151 dialysis as, 1718
Glomerular ltration rate (GFR), 3233, 53 work and, 160
Glomerulonephritis, 58 Ignorance, 10. See also Knowledge;
Grafts. See Arteriovenous grafts Misperceptions
Gratitude, 2021, 54 Immune system, 89
Grocery shopping, 19495 Immunosuppressants, 59, 89, 93, 150
Guests. See Visiting Impotence. See Erectile dysfunction
Guide to Disability Rights Laws, 166 Independence, 38, 59, 65, 93
Guilt, 142 Inertia, 165, 201
Gynecologists, 148 Infection, 38, 40, 66
of access, 38
Happiness, 11415. See also Psychological PD and, 62
impacts signs of, 62
Healthy living, 120. See also Diet; Exercise Indelity, 140
Heart, 31 Information. See Knowledge
calcication of, 52 Insulin, 66, 75. See also Diabetes
disease, 100 Insurance, 172. See also Medicaid; Medicare;
Heat, tips for beating, 198 Medigap
Hemodialysis, 35, 15 practicalities of, 17782
benets of, 6872 private, 17981
diet and, 70, 184 secondary, 219
drawbacks of, 68 state funded, 17981
goals of, 33, 55 travel and, 22122
home, 65, 6870, 21718 Interests, outside of dialysis, 1415
at home, 57 Internet, 83
Index 255
Interpersonal relationships. See also Family; as treatment, 89

Friends wait for, 78
dialysis effects on, 13637 Kidneys
marriage in, 115, 140, 14143 balancing function of, 31
outside resources for, 14445 donors of, 19, 73, 9193
patients perspective on, 13740 ltration by, 31
sex life and, 89, 13839, 14548 hormone production by, 31
stresses on, 14142 Kindness, 153
Intravenous (IV) stands, 40 Knowledge, 12, 83, 134
IV stands. See Intravenous stands about sex and dialysis, 14345
of dietary restrictions, 1034
Job. See Work expanding, 14345
K-team, 94
Kidney disease dieticians role on, 1034
as death sentence, 1216 getting most from, 1068
as disability, 2324 members, 100105
incidence of, 10 nephrologists role on, 102
onset of, 53, 75, 163 nurses role on, 1023
polycystic, 23 patients role on, 1045
stages of, 3233 social worker role on, 103
symptoms of, 51 technicians role on, 104
terminology of, 1213 thanking, 11213
Kidney donors, 19, 73, 9193
family as, 9293 Language, travel and, 223
living, 9192 Laughing, 93
Kidney failure. See Kidney disease Lidocaine, 45
Kidney transplant, 5, 15, 1819, 55, 58, Life extenders, 86
165 Lifeline. See Access
acute rejection stage of, 90 Lifestyle change, 1314, 56, 142
age and, 8586 Limitations. See restrictions
benets of, 83 Liquid kilograms, 4142
cost-benet analysis of, 8891 Liquid weight gain, 19697
dialysis and, 73 Liquids
drawbacks of, 82 blood pressure and, 4546
emotional reaction to, 79 buildup in lungs of, 32
expectations of, 81 determining, 4043
nancial burden of, 9091 dieticians perspective on, 18487
t for, 8488 dry mouth and, 19899
medication regime for, 82, 8991, 93 excess, 4041
nephrologists perspective on, 85 heat and, 198
patients perspective on, 7584 intake, 7, 32, 70
pregnancy and, 150 patients perspective on, 2023
preparation for, 78 removal, rate of, 43
rejection of, 81, 93 removal, steps of, 43
screening process for, 77 restrictions on, 6263, 98, 118, 18384,
support groups for, 132 19699
surgeon, 105 retention of, 44, 64, 69
survival rates of, 7374 tips for drinking less, 19798
travel while waiting for, 21718 what constitutes, 196
256 Index
Living kidney donors, 9192 Occupation, 3637

Love life. See Sex life OPTN. See Organ Procurement and
Transplantation Network
Marriage, 115, 140, 14143. See also Spouse Organ Procurement and Transplantation
Medicaid, 26, 17779 Network (OPTN), 73, 86, 91
buy-in programs, 178 Organizational resources, 11112
mental health services and, 179 Orientation, to dialysis, 2930
travel and, 220
Medical documentation, 219, 22325 Paranoia, 128
Medical history, 22325 Parents, 136
Medicare, 26, 58, 9091, 1023, 17781 Partner, 7071. See also Spouse
medication and, 179 Patient advocacy committee, 67, 110
mental health services and, 179 Patients
travel and, 219 active v. passive, 67
Medication, 129, 13233 as advocates, 1045, 10811
for depression, 132 capabilities of, 130
Medicare and, 179 choice of, 99
for sex life, 145, 14748 community of, 69, 118, 151
for transplant, 82, 8991, 93 control by, 1921, 51, 64, 67, 152, 186
travel and, 22325 doctors and, 100101
Medigap, 17981 etiquette towards, 15455
MedjetAssist, 22122 mood of, 11415, 127
Mental health services, 179. See also new, 51, 5859, 9798, 11718, 139
Professional counselors respect for, 67
Michener, James A., 99 rights of, 16667, 170
Milestones, 151 role of, 1045
Misperceptions, 1028, 154, 161, 174 stories of other, 118
Modalities, 5556, 7172. See also successful, 8, 5153, 64, 9697, 119, 164,
Hemodialysis; Peritoneal dialysis 18586
Monotony, 6, 8, 106 PD. See Peritoneal dialysis
Mood. See also Psychological impacts Peritoneal dialysis (PD), 3, 5, 13, 15
of dialysis patients, 11415 benets of, 6468
exercise and, 134 challenges of, 63
family and, 127 control and, 67
diet and, 6265, 184
National Kidney Foundation (NKF), 10, 11112 disabilities and, 67
Needles, fear of, 123 drawbacks of, 6468
Negativity, 39, 132 exercise on, 66
Nephrologist, 34, 49, 74, 8485, 100101 goals of, 55
capability of, 1012 hemodialysis v., 5557, 5861, 13738,
perspective of, 95100 184
relationship with, 100101 infection and, 62
role of, 102 patients perspective on, 5764, 13740
NKF. See National Kidney Foundation schedule on, 166, 170
Nonfunctioning kidney disease, 13 sex life and, 146, 148
Nurse supplies for, 217
perspective of, 5054 training for, 65
role of, 1023 travel on, 62, 6566, 21718
Index 257
Peritonitis, 62 Respect, 67
Pharmacist, 105 Respite care, 130
Phosphorus, 5254, 62, 118, 18788 Restrictions, 6
Physical therapist, 105 dietary, 32, 98, 118, 156, 18384, 18789
Plasma, 43 on liquids, 6263, 98, 118, 18384, 19699
Polycystic kidney disease, 23 on travel, 26
Positivity, 8, 18, 39, 13435, 185, 189 Retirement, 17577
Potassium, 62, 118, 18788, 194 Rights
Potatoes, 194, 202 of family, 168
Pregnancy, 14950 of patients, 16667, 170
Preparing for Emergencies: A Guide for Riis, Jason, 114
People on Dialysis, 226 Role models, 135
Professional counselors, 129, 13132
Professionals Salt. See Sodium
capabilities of, 20 Satisfaction, 37
challenges for, 1056 Schedule, 64, 156, 16466, 169
standards for, 50 exible work, 17071
trust of, 22, 69 travel, 225
Professions, of dialysis patients, 23, 161 School, 2224, 161, 16366
Prospective employers, disclosure to, 16870 nancial assistance for, 164
Protein, 187, 189 home, 163, 165
Psychiatrists. See Professional counselors practicalities of, 16577
Psychological impacts, 11416 Self-consciousness, 146, 148, 200
aftershocks, 12128 Self-esteem, 5253, 187
anger, 12122, 12628, 134, 139 Sex life, 89, 13839
anxiety, 1618, 27, 12125, 132, 134, 139 compromise in, 147
40, 144, 2078, 21213, 217 female patients and, 148
depression, 16, 115, 12122, 12526, 132, information on, 143
134, 139 literature on, 139
on family, 11719, 121, 125, 127, 139 medications for, 145, 14748
healthy coping mechanisms for, 12933 PD and, 146, 148
patients perspective on, 11621 physical barriers to, 145
on sex life, 14546 psychological barriers to, 14546
shock, 115, 134 redening, 147
Psychosis, 128 talking about, 146
Shock, 115, 134
Quality of life, 74 Siblings, 154
Questions, 22, 98, 156 Sleep, 66
Social life, 163
Real kilograms, 4142 Social worker, 161
Red blood cells, 43 role of, 103
Rehabilitation services, 18182 talking with, 131, 181
Relationships. See Interpersonal travel consultation with, 218
relationships Sodium, 18788
Relaxation, 37, 45 Spirituality, 129, 133. See also faith
Renal Data System Annual Report, 86 Spontaneity, 1415
Renal decline, 34, 52. See also Kidney disease Spouse, 11720, 130, 136, 13842, 153. See also
Renal failure. See Kidney disease Caregivers; Marriage
258 Index
Strangers, talking with, 15759 patients perspective on, 20512

Study. See School on PD, 62, 6566, 21718
Suds factory. See Hemodialysis centers planning ahead for, 21819
Supplies, 22325 practical information on, 2045, 21227
Support, 118, 130 scheduling and, 225
disinterest as, 152 supplies and, 22325
of family, 12931 time zones and, 22223
ways to provide, 15052 tours and, 22021
Support groups, 129, 132 transplantation, waiting for, 21718
Swimming, 63 unusual circumstances and, 21415
Talking, 15758 UFR. See Ultraltration rate

with acquaintances and strangers, 157 Ultraltration rate (UFR), 43, 46
59 Unit. See Hemodialysis centers
with colleagues, 17375 Unknown, fear of, 25, 27
Technician Urea, 31
capability of, 117 Uremia, 31, 48, 52, 58, 61, 64, 70
role of, 104 Urination, 40, 80
Thirst, 196. See also Liquid Urine, 31
Time zones, 22223 Urologists, 14748
Tours, 22021
Transplant. See Kidney transplant Vascular surgeon, 105
Transportation to center, 3839, 65 Virility, 140. See also Sex life
Travel, 9, 14, 2427, 117, 120, 134 Visiting, 37, 151, 15456
advice for, 210 Volunteering, 2324, 17576
alone, 209, 214
anxiety about, 2078, 21213, 217 Waiting, 3940
away clinics for, 206 Water, 63. See also Liquids
companies, 212 Weigh-in, 4043
companion, 20512, 214 Wet weight, 41
driving for, 220 Williams, David, 27
duration of, 22526 Williams, Lauryn, 27
for emergencies, 219 Women, sex life and, 148
nancial concerns and, 21920 Work, 14, 2224, 16062
home hemodialysis and, 21718 exible schedules for, 17071
insurance for, 22122 identity and, 160
international, 211 patients perspective on, 16265
language and, 223 practicalities of, 16577
limits on, 26 returning to, 176
medication and, 22325 Working Mother, 172

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Dialysis

Daniel Offer, M.D.

Oxford New York

Copyright 2007 Daniel Offer, Marjorie Kaiz Offer,

Published by Oxford University Press, Inc.

Oxford is a registered trademark of Oxford University Press

All rights reserved. No part of this publication may be reproduced,

To Ariel with love and gratitude

One Dialysis Misperceptions versus Realities 3

Two A Visit to the Suds Factory:

Three Dialysis Options:

Four The Decision to Pursue a Transplant 73

Five The K-Team:

Six Dealing with Emotions:

Seven The Impact of Dialysis

Eight Work and Financial Implications

Nine Adapting to the Dialysis Diet,

Ten Traveling and Planning for Emergencies

Appendix A: Glossary of Terms 231

Appendix B: Helpful Resources 235

hen a nephrologist, a doctor specializing in kidney func-

alternative forms of dialysis that give patients more exibility and

dialysis likely warranted a separate book entirely. But if you are a

their ongoing support and encouragement. We are most appreciative

he kidney specialist, a nephrologist, gestures to the

Donnas Story, a Patients Perspective

to die. I couldnt imagine those needles in my arm. I thought it was

to do. They recommended gastric bypass surgery for me. But I

Im the church treasurer and as the treasurer I get to interact with a

With my husband? It hasnt affected him at all! Hes not on Via-

why they call it dialysis instead of life-alysis. I wonder about that

Shedding Light on Our Most Common

As Donnas story reects, most of the world knows very littleor

about dialysis. I even told my husband hed probably have to divorce

Misperception #1 (The biggest one of them all): Kidney disease is a death

up for. This is extremely difcult for many people to digest at rst,

something you wished for, or as one patient said, not something

Misperception #2: Dialysis is to be feared and is a total downer.

Misperception #3: Your only hope for regaining a meaningful life is to

Misperception #4: Your medical care is dictated to you.

challenge or raise questions about their quality of care. Whether or

Another dialysis veteran told us he would give these words of ad-

Misperception #5: You can no longer work or study.

Reality #5: Many dialysis patients do continue to work or study.

Diagnosis of kidney failure does not indicate disability. For

You may, however, need to make some adjustments to your work

I wanted to maintain as normal a schedule as I could and I did

Misperception #6: Traveling is out. You are grounded for life.

Perhaps you saw coverage during the 2004 Winter Olympics of

A Visit to the Suds Factory

or most people, going to a hemodialysis center for the rst

Understanding the Role of Kidneys and What

can cause edema, uncomfortable bloating, and swelling throughout

Stage 1: kidney damage with normal GFR of 90 or above.

Stage 3: moderate decrease in GFR 3059.

The Goals of Hemodialysis

An Introduction to Your Lifeline

2. Permanent accesses also have decreased risks of infection and last

Permanent Hemodialysis Accesses