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