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Volume 9, Number 3 A publication for transplant recipients of all organs and their families. Winter 2002 I’m Not Glad I Had Kidney Failure But… By Bill Hollins K idney failure and dialysis Both friends and humor played able to have. "You can have a were no fun. I followed a tasteless a huge role in my post-transplant maximum of three," the doctor diet with the color boiled out of all healing. At the time of my replied. He continued to pester my food. I was permanently tired transplant, most of us were fairly the doctor about where each and had sporadic pain. Then, I unsophisticated about the kidney would be placed. The lost my job. I hated dialysis, but it process. The information exasperated doctor, after saying was better than the alternative — revolution had not yet taken off. that the first and second kidneys pushing up daisies. would go on the right and left sides of the abdomen, told the Enough has been written about pesky patient that the third one the completely new life that a "where the sun don't shine." The transplant brings. What is not patient looked amazed and said often said is that it can bring "Isn't medical science wonderful?" about a rich lifestyle and many I nearly fell off my chair laughing new friends. It is totally unlike life and almost burst my stitches. before transplant. It is as if one had not been through the whole The Transplant Games ordeal of kidney failure. I made my first new friend as I came out During my dialysis episode, and of the anesthesia after the the enormous challenge of transplant surgery. I looked Bill Hollins with wife, Gillian, transplantation that followed, I dreamily up into the eyes of the and two sons Raja (left) and came to the conclusion that I nurse by my bed and said, "My Peter (right). needed to have a goal. Life is God, you're ugly." That was in about living and achieving and 1984, and Sue and I have been Good immunosuppression had being something. friends ever since. Her twin just become available brother, who lives in Scotland, (cyclosporine). One recipient I I heard about the Transplant became my best pal. recall from my clinic asked an Games and dreamed of getting overworked doctor about the better and being healthy enough number of transplants he was to participate. While on dialysis, I Continued on page 3 © Copyright 2002 National Kidney Foundation Transplant Chronicles is a Program of the National Kidney Foundation, Inc., ISSN# 1524-7635 supported by Pharmaceuticals Corporation National Kidney Foundation editor’s desk ✍ appy New Year! After indulging Transplant Chronicles is published by the National Kidney Foundation, Inc. H Opinions expressed in this publication do not necessarily represent the over the holidays, the New Year is position of the National Kidney Foundation, Inc. usually when we attempt to make changes in our lives. For many of us Volunteer Editorial Board Vanessa A. Underwood, BS, it means starting a diet. This issue Beverly Kirkpatrick, MSW, AFAA, ACE, ACSM LSW Fitness Trainer/ of Transplant Chronicles focuses Editor-in-Chief Wellness Consultant on reducing your cardiac risk A.I. duPont Hospital for Plaistow, NH Children through lifestyle changes, Wilmington, DE Jim Warren, MS exercise, diet and medication. Transplant News Weston Bush, PharmD Fresno, CA University Hospital of Cleveland Cleveland, OH Alexander Whiteaker Now is also the time to gear up for the 2002 U.S. The Guardian Life Insurance Transplant Games in Orlando, Florida (June 25-29). As Adela T. Casas-Melley, MD Company of America A.I. duPont Hospital New York, NY the cover story details, the Games are not just a for Children Wilmington, DE competition; they mean so much more. By Editorial Office: National Kidney participating, you will make new friends from all walks Mike Cervantes, LCSW Foundation, Inc. Loma Linda University 30 E. 33rd Street, of life, as well as meet recipients from your local area. Kidney Center New York, NY 10016 Loma Linda, CA (800) 622-9010 You will meet donors and donor families and most (212) 889-2210 important, have a ton of fun. Robert Gaston, MD http://www.kidney.org University of Alabama Division of Nephrology Editorial Director: The New Year has also brought new faces to the Birmingham, AL Catherine Paykin, MSSW Transplant Chronicles editorial board. The National Suzanne Lane-Conrad Managing Editor: Iowa Donor Network Sara Kosowsky Kidney Foundation welcomes all of our new editors. As Iowa City, IA always, we invite you, our readers, to submit your Production Manager: Kimberlee Rast, RD Marilyn Lara stories, poems, artwork, quotes, jokes and letters. Methodist Specialty and Transplant Hospital Texas Transplant Institute Design Director: HAVE A GREAT YEAR! San Antonio, TX Oumaya Abi Saab Executive Editors: Diane Goetz Beverly Kirkpatrick Gigi Politoski For the Editorial Board Transplantation and HIV By Laurie Carson, RN, CCTC Because of improvements in were often not considered good threatening infections. Instead, the medications used after candidates. HIV positive people are dying transplant and an increased from other complications, understanding of the immune Twenty years ago, when HIV including organ failure. In the system, people with additional was first diagnosed, the last five years an increasing medical conditions, in addition to prognosis for people infected with number of people with HIV have their organ failure, are routinely this virus was poor. A diagnosis been developing chronic liver accepted for transplantation. of HIV carried with it the fear, if disease and failure from hepatitis Transplantation has been not always the reality, of death. B and C. More people with HIV accepted as a successful However, in the past 20 years are developing a type of kidney treatment for people with kidney, progress has been made in the failure caused by HIV, called heart, lung and liver failure. treatment and management of HIV-associated nephropathy as Thirty years ago, people people infected with HIV. Now well as being affected by all the considered for transplant had to people with HIV are living as long other common causes of kidney meet very conservative inclusion as people with other chronic criteria and those with diabetes, illnesses and they are not Continued on page 3 heart conditions and hepatitis developing or dying from life- 2 Transplant Chronicles, Vol. 9, No. 3 I’m Not Glad… but my transplant has enriched my life far beyond what I might ever have expected. continued from page 1 Bill Hollins, a kidney transplant recipient, is a envisioned participating in the Games to show, not professor at the University of Westminster, London. the rest of the world, but myself, what I could do. I He is the author of numerous books on economics remember being told that even if I finished last, I and business and the father of two. His friendship would receive big applause. I wanted to try with U.S. athlete, Alex Whiteaker, resulted in his something and succeed. It inspired me. writing this article! TC My first Games were in Edinburgh, in 1985. I have participated in the British Transplant Games ever since and I love every minute of them. The weekend of the Games is my favorite weekend each year. Transplantation and HIV The British Games started in 1978 and were originally held in a park in Portsmouth. The continued from page 2 headline in one of the national papers read "99 failure, including diabetes, hypertension and Bloomin’ Miracles." In one event, the object was to glomerulonephritis. run with a hard-boiled egg balanced on a spoon. It gives you an idea of the humble beginnings of As a result of the advances achieved in both the transplant games as a whole. fields of transplantation and HIV medicine, transplantation can be an option for people with Participation has grown so much that athletes are HIV and organ failure. Several transplant centers limited to a certain number of events. In the across the United States are participating in a National Kidney Foundation’s U.S. Transplant study to evaluate the safety and effectiveness of Games, the limit is four per athlete. The Games are transplanting people with well-controlled HIV. This there primarily to show the world that transplan- multi-site study with a common protocol and tation works. Today, I am a swimmer at the Games. centralized data collection and analysis facilities As I became more competitive, I worked with a will further the goals of this pilot study. The trainer to help me improve my technique. I wanted objective of this pilot Phase 1 study is to begin to come in at a respectable last place. collecting safety and efficacy data that will be valuable in guiding the management of increasing Despite the main purpose of the Games, the best number of HIV-infected people confronted with end part is making life-long friends. I now have friends stage liver and kidney disease in the face of well- from all over the world and from all different walks controlled HIV disease. Eligibility criteria for the of life. They are folks I never dreamed of talking to study include meeting standard listing criteria for before transplant, and now they are calling, writing placement on a transplant waiting list, and and e-mailing me. Information is exchanged about willingness to undergo frequent monitoring. The the Games, our families and friends. It is a whole total study period is five years. This study is an new life. People at the Games don't talk about being important initial step towards answering the ill; they talk about being well. That is what I want question, is transplantation a successful treatment and need to hear.

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