Dialysis without Fear: A Guide to Living Well on Dialysis for Patients and Their Families

273 Pages·2007·1.13 MB·English

by  Daniel Offer, Marjorie Kaiz Offer, Susan Offer Szafir

D i a l y s i s
without
F e a r
This page intentionally left blank
D i a l y s i s
without
F e 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
Oxford University Press, Inc., publishes works that further
Oxford University’s objective of excellence
in research, scholarship, and education.
Oxford New York
Auckland Cape Town Dar es Salaam Hong Kong Karachi
Kuala Lumpur Madrid Melbourne Mexico City Nairobi
New Delhi Shanghai Taipei Toronto
With offices in
Argentina Austria Brazil Chile Czech Republic France Greece
Guatemala Hungary Italy Japan Poland Portugal Singapore
South Korea Switzerland Thailand Turkey Ukraine Vietnam
Copyright © 2007 Daniel Offer, Marjorie Kaiz Offer,
and Susan Offer Szafir
Published by Oxford University Press, Inc.
198 Madison Avenue, New York, New York 10016
www.oup.com
Oxford is a registered trademark of Oxford University Press
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 Szafir.
p. cm. Includes bibliographical references and index.
ISBN 978-0-19-530994-2—ISBN 978-0-19-530995-9 (paper)
1. Hemodialysis—Popular works.
2. Chronic renal failure—Popular works.
I. Offer, Marjorie Kaiz.
II. Szafir, Susan Offer, 1971–
III. Title.
RC918.R4026 2007
617.4'61059—dc22 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
This page intentionally left blank
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-
Wtion, 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 significantly minimized rates
of anemia. Advancements of technologies have reduced hemodial-
ysis sessions to three to five hours in duration and have introduced