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. The sports are important, but not option for people with HIV and organ failure? For as important as having fun. We look forward to that more information on organ transplantation in one week every year when we all can get together. people with HIV or for information about the study,

visit the Web site at: http://hivinsite.ucsf.edu TC I attended the National Kidney Foundation’s U.S. Transplant Games at Disney’s Wide World of Laurie Carlson, RN, CCTC, is the study coordinator Sports™ Complex in 2000. I hope to attend the 2002 and a transplant coordinator at the University of San Games. I also hope all of you can make it down to Francisco Medical Center in California. Florida for the U.S. Transplant Games this June. Spread the word, exercise, have fun and meet new people!

Obviously, I am not happy to have kidney failure,

Transplant Chronicles, Vol. 9, No. 3 3 medical beat Live Longer After Transplant: Reduce Your Cardiovascular Risk Are You Up to the Task? By Robert S. Gaston, MD

ore kidney recipients are vessels, heart attacks and strokes. mmHg for people with a keepingM their transplants longer Smoking is also expensive and significant amount of protein in than ever before: more than half stinky. If you are already facing all their urine. Achieving these goals can now be expected to last at of the challenges of living with will require close cooperation with least 15 years. Most patients are kidney failure, why add more your doctor in putting together a keenly aware of the threat of trouble? medical regimen that best fits your individual needs. rejection and the importance of Many kidney recipients gain anti-rejection medications. significant weight after their Finally, many people with However, among recipients who transplant. Clearly, the drugs kidney failure (before and after take their transplant drugs as used after transplantation mainly transplantation) have elevated prescribed, losing a kidney to prednisone, may cause some blood lipid levels. Generally, this rejection is increasingly rare. Now, weight gain. But discontinuing means high cholesterol, although the most common reason for restrictive dialysis diets and other blood lipids may also transplant failure is the avoiding exercise also contribute increase coronary risk. The to post-transplant weight gain. National Cholesterol Education premature death of a recipient After a transplant, old diet habits Program has recently changed its due to cardiovascular disease. tend to return. It is surprising recommendations regarding What are you doing to protect how often lowering of blood lipids, your heart? the amount particularly "bad" cholesterol, or of weight People with kidney failure are LDL. For people who already have gained more likely to die of heart disease heart trouble, LDL levels should after than average Americans, and at be kept below 100 mg/dl. For transplant those with at least two risk factors an earlier age. High blood is similar for heart disease (a category that pressure and protein in the urine, to weight lost while on dialysis. includes most kidney transplant increase the risk for heart attacks, Being overweight raises blood hardening of the arteries and pressure and increases the recipients), an LDL level less than strokes. To lower your risk, most workload imposed on your heart. 130 mg/dl is the goal. doctors suggest reducing your It also increases your chances of Unfortunately, achieving these cardiovascular "risk factors." This developing diabetes. target levels often requires not means lessening the impact of More than 80 percent of kidney only changes in diet, but also things that can damage your recipients have high blood cholesterol-lowering drugs. These circulatory system. pressure after the transplant. Diet drugs can be expensive, have Unfortunately, some factors and exercise can help, but most numerous side effects, and can cannot be changed, such as age transplant patients require interact with your transplant (males over 45 and females over medical treatment for their medications. Again, don’t be afraid 55 years), or a family history of hypertension. Controlling your to discuss your cholesterol levels premature heart disease. However, blood pressure not only reduces with a member of your transplant other factors do respond to risk of heart attack and stroke, team or your physician. medical treatment and changes in but also protects and prolongs Before the 1990s, we recognized lifestyle, thus improving your transplant function. rejection as the major hurdle chances of a longer, healthier life Recent recommendations from preventing long-term transplant after transplantation. the National Institutes of Health survival. By attacking that prob- lem, we have achieved significant Cigarette smoking may be the suggest that the old target improvements. If we are to look most easily recognized risk factor. pressure of 140/90 mmHg, or back in equal triumph a decade Smoking causes blood vessels to better, may not provide adequate from now, transplant recipients squeeze down and impairs the protection. Now, recommended and physicians alike must do a proper flow of oxygen to all the blood pressures are 130/85 better job protecting your heart. tissues in your body. It increases mmHg for people with normal Are you up to the task? risk of cancer, blockage of blood kidney function and 120/75 TC

4 Transplant Chronicles, Vol. 9, No. 3 Yoga: Breath, Movement and Mindfulness By Collette Herrick, RN

Yoga has entered mainstream America with an your spine from the lower belly to estimated 15 million Americans practicing yoga on a your navel. Notice how the breath regular basis. has a natural pause after inhale Many hospitals offer yoga to clients and staff, and exhale. Allow your inhale politicians practice yoga on their lunch breaks, and exhale to be smooth from national sports leagues include yoga in their training beginning to end and let your programs, and the National Center for Complement- attention rest fully on the experience of breath in ary and Alternative Medicine, a division of the your body in each moment. Feel how your breath National Institutes of Health, researches the health relates to your spine. Feel the flowing, soothing, effects of yoga in conditions such as asthma, rhythmic quality of your own amazing breath! multiple sclerosis and obsessive-compulsive Movement disorder. Our bodies love movement. Yoga postures are This 5,000-year-old philosophy of life and holistic designed to benefit our body, breath, mind, emotions health practice offers an approach to mind and body and spirit. There is emphasis on performing the well-being through ethical guidelines, postures, postures slowly and consciously and coordinating breathing techniques and progressive steps in the movement with the breath. Cultivate a calm and concentration and meditation. There are several alert focus in the dynamic movement as well as in forms of yoga, ranging from gentle and therapeutic the resting poses. approaches adapted for individual needs, to fast- Anyone at any fitness level may benefit from paced physically challenging forms, and one-size- linking breath with simple movement and fits-all classes. It is important to select a class that awareness. matches your needs and interests and is offered by Practice a qualified, experienced teacher. Stand with your feet hip-distance apart. Inhale Breath and raise your arms overhead, feel the expansion in Breathing is something we do approximately your chest and let your head follow the extension of 20,000 times a day, unconsciously. Yet, it is the your spine. On exhale draw your belly toward your single physiologic function that we can easily spine as you lower your arms. Let the arm influence with our conscious awareness and which movement parallel the length of your breath. Pause affects the quality of our overall well-being. Much of a second or two after each inhale and exhale. Repeat what the ancient yogis understood about the power this eight to 10 times, and then take notice of how of our breathing is now documented by Western you feel. medicine. Our breath can help us to increase Mindfulness energy, calm our minds, strengthen our bodies, At times, we feel like we are fully present and reduce pain and focus more on our lives. completely satisfied with being in the moment. Practice During such times, life is probably full, rich and Sit in a firm chair with your feet flat on the floor. vibrant. There may be a sense of contentment or joy. Allow your eyes to close. Invite your attention to rest Since these are fleeting moments, and we all live, to in the moment. Lengthen and broaden through your a great extent, reliving the past or planning for the back, relax your shoulders, and imagine there are future, there is great benefit in practices that help invisible strings on the top of your head and us to strengthen our capacity to be present in the someone is gently pulling up on the strings. Feel the moment. back of your neck lengthen and your spine extend. All of the world’s religions have recognized the Tuck your chin to lengthen through the top of your power of focusing and calming the mind in the head. You cannot do this practice wrong. present moment. Prayer, reflection, chanting, Relax your muscles and invite a sense of mentally reciting a word, or focusing on the qualities curiosity. Move into a dignified seated posture. Let of an inspirational person are all forms of your attention follow your breath on inhale and feel contemplation or meditation. In the Book of Psalms, the expansion in your chest and the widening and there is a passage that emphasizes the importance lifting of your ribcage. Let your belly inflate as your of mindfulness and slowing down. "Be still and know diaphragm (a large dome-shaped muscle under your God." rib cage) moves downward at the end of inhale. On exhale, consciously draw your belly back toward continued on page 6

Transplant Chronicles, Vol. 9, No. 3 5 eating right Fruit Lasagna By Chef Oliver Hale “Chef O” Serves six to eight people Bake for 25-35 minutes in a water bath. For a water bath, take a small baking dish and place it in a large Ingredients: baking dish with about an inch of very hot water. 1/2 pound lasagna noodles, cooked 1 box of instant vanilla pudding mix Cool, cover and refrigerate for one hour. skim milk Remove from refrigerator and serve. TC 1 pint strawberries 1 pint raspberries Oliver Hale, known as Chef O, is a 1 pint blueberries member of the transAction Council Executive Committee and a kidney Preheat oven to 300 degrees. transplant recipient of 16 years. A specialist in heart-healthy French Mix the instant pudding with and Italian cuisine, Oliver produces skim milk in a mixing bowl. and hosts his own cooking show in Assemble the lasagna by Michigan called "Chef O’s Place" drizzling some of the pudding and has his own cooking oil known mixture on the bottom of a as "Oliver Oil." Oliver is an avid shallow rectangular baking tennis player and has won 21 dish, putting in a layer of medals in the National Kidney noodles, and sprinkling with Foundation’s U.S. Transplant fruit and pudding mixture. Games and the International Repeat this process until you Transplant Games. finish with all of the noodles, sauce and fruit. Chef O pauses during filming of his cooking video for a freeze-frame photo.

out peace" on exhale. Place your Yoga… hands over your heart and do KNOW YOUR continued from page 5 the same. MEDICATION Practice Alternately, on inhale, open Sit in a chair or lie flat in a your arms to the side and Contact your comfortable position. Take your breathe in a sense of gratitude. time and feel your body fill with On exhale, draw your arms to transplant awareness. Start with your feet your heart and breathe out team if your and progress to your legs, torso, gratitude. When you have medication arms, neck and head. As you completed your practice, pause looks different scan your body, notice each area and feel the quality of your without judgment. Stay present energy. Allow yourself to deeply when you and notice the quality of rest in the preciousness of the receive it. sensation or lack of sensation in moment. TC Make sure each area of your body. Colette Herrick is a registered your pharmacist does not Link your breath with nurse and a former heart qualities that nurture you, like change any of your transplant coordinator. She is a gratitude, joy, mercy and love. immunosuppressive certified yoga teacher/yoga Place your hands on your belly therapist and a national medications without first and take six to12 breathes, integrative wellness & informing you and your silently repeating, "breathing in organizational consultant based calm," on inhale and "breathing transplant doctor. in Salt Lake City, Utah.

6 Transplant Chronicles, Vol. 9, No. 3 Complications Following Liver Transplantation By J. Jeffrey Malatack, MD In the early 80s, long-term duct infection, also referred to as bloating of facial survival following liver cholangitis. Anti-clotting medicines features with cyclosporine; transplantation was a direct result can be given to decrease the diabetes and spasms of the of increasingly selective anti- frequency of this complication. The stomach causing vomiting with rejection medications and fine transplanted liver may naturally tacrolimus) the kidney surgical techniques. Recently, repair itself. Occasionally the clot complications are the most further surgical advances, can be removed and the organ can limiting. Most often these side including splitting donor livers and be saved, but it often requires re- effects can be managed by living related liver donation, have transplantation. changing the drug dosage. When that is not possible, a change of significantly increased the number Scarring of the bile duct drugs or addition of new drugs can of people who can be treated with sometimes occurs as a often resolve the problem. liver transplantation. Despite these complication of the reconstruction advances in liver transplantation of the bile duct during transplanta- Organ rejection is a frequent as a treatment, both short- and tion. This complication has been complication after transplanta- long-term complications continue decreasing due to improving tions, but it only rarely fails to to require close post-transplant- surgical technique. However, the come under control with additional ation monitoring. use of living related donation and immunosuppression. liver splitting has had a higher Immediate or short-term Infections continue to be of scarring rate than complete complications include: great concern for transplant cadaveric transplantation. • Non-function of the liver upon recipients of all organs. One of the transplantation most problematic of the complicat- At times, these scars can be • Clotting of the artery or vein to ing transplantation infections is treated by placing a stent into the the transplant post-transplantation lymphopro- duct and across the area where • Scarring of the bile duct. liferative disease (PTLD) due to scarring is occurring, for an Epstein-Barr virus (EBV) infection. Why some livers fail to work extended time. A stent is a small The combination of this infection upon transplantation. The cause device that, like internal scaffold- and the immuno-suppressed remains unclear, but the frequency ing, holds the duct open. Other status of the liver transplant increases when the organ is times the duct requires additional recipient may lead to the develop- injured due to the events that surgery. Scarring of the bile duct is ment of a lymphoma-type tumor caused the cadaver donor’s death, often first seen as an infection of that, if unchecked, can be life- is fatty, or has a long cold ischemia the bile ducts when the bile backs threatening. Fortunately, most time (time the organ is out of the up into the liver because it cannot cases of PTLD improve if the anti- body prior to transplantation). With get through the blocked duct. living related donation, the use of rejection medications are an injured or fatty liver can be The major long-term decreased and with the use of anti- avoided and the cold ischemia time complications following liver viral medications such as gancy- is always short. When immediate transplantation relate to: clovir. In those unusual instances non-function occurs it is a serious • Side effects of the when decreased anti-rejection complication requiring rapid re- immunosuppressive drugs medicines do not resolve PTLD, transplantation. • Organ rejection other medications that attack the • Infections — certain late lymphoma cells can be used. Clotting of the artery or vein complicating ones act uniquely Liver transplantation outcomes can be an early post-operative due to immunosuppression. complication. The hepatic artery, will continue to improve with close which supplies the liver, clots most The main side effects of the follow-up and aggressive responses T often when there is a significant primary immunosuppressants to these complications. C used, cyclosporine or tacrolimus, difference between the size of the J. Jeffrey Malatack, MD, is professor donor’s and the recipient’s hepatic are kidney dysfunction, high blood of pediatrics at Thomas Jefferson arteries. pressure and elevated potassium. University Hospital and director of the While other side effects are seen Diagnostic Referral Center at Al duPont with these drugs (excessive hair Hospital for Children and a member of Clotting of the artery is often first the hospital’s liver transplant team. seen as a severe infection or bile growth, tremors, gum thickening,

Transplant Chronicles, Vol. 9, No. 3 7 keeping fit Exercising is Good for Your Heart By Vanessa Underwood, BS, AFAA, ACSM, CSCS

E xercise has been found to be effective at Exercising can help you improve bone density and lowering the risk of cardiovascular disease. Regular allow you to gain control of your blood glucose. You and continuous exercise can lower blood pressure can expect improvements in your functional and cholesterol levels. Exercise may even decrease strength, blood circulation and lung capacity. You the need to take blood pressure medications. may increase your joint stability and integrity, your Hypertension and high cholesterol are factors ligaments and tendons, your range of motion, directly related to increased risk of heart attack and coordination and balance, your circulation, stroke. Thus, by lowering these risk factors a flexibility, sexual health and stress management. person may lower the risk of cardiovascular disease People with diabetes can reduce their need for at the same time. insulin. Through exercise, you may even be able to reduce premature aging, anxiety, mood swings, risk Be sure to check with your physician before of injury and the risk of cancer and other chronic beginning any exercise program. Most of the diseases. As an added bonus to your physical exercise programs that are beneficial to the improvements, you will gain improved psychological cardiovascular system are written for heart-healthy and social well-being, thus elevating your self- adults, so be sure to discuss what would be esteem and confidence. appropriate for you. A heart-healthy adult is usually described as someone without documented Begin your lifestyle change by setting short- and symptoms of heart disease and no more than one long-term goals that you believe you can reach. Be primary risk factor for heart disease. realistic and schedule your program into your existing routine, so that it becomes a way of life. The health benefits of physical activity are Whatever your goals may be, they can better be comprehensive and will target every system in your realized if you make exercise part of your daily

body. You may be able to lower your resting blood life. TC pressure (blood pressure taken while you are not in motion). You may be able to decrease the total serum cholesterol in your system, increase the "good" HDL cholesterol and decrease your body weight and fat.

Editor’s Note: The artist, Lee Dolezal, was a cartoonist for his local paper. A kidney patient from Yorkville, Illinois, he passed away in November 2000. CARTOON

8 Transplant Chronicles, Vol. 9, No.3 Transplant News Digest

From the editors of Transplant News

Transplant Community Rises to the Challenges Caused by September 11 Terrorist Attacks By Jim Warren, Editor and Publisher

The transplant community found itself smack in second kidney. The heart, which has a "shelf life" the middle of the turbulence that has enveloped the of about eight hours after it is procured, was United States since the September 11 terrorist transplanted six hours after it was recovered. attacks on New York, Washington and Pennsylvania. The high-stress lives of transplant TISSUE professionals and potential recipients alike have Both the American Association of Tissue Banks been raised up to levels no one could have (AATB) and Eye Bank Association of America anticipated before the tragedy occurred. (EBAA) immediately issued statements regarding The massive medical emergency of the attack the attacks. itself and the subsequent episodes of anthrax The AATB asked that all member skin banks bioterrorism have triggered a state of high alert in "have fresh or frozen skin that can be made each area of transplantation — solid organs, tissue, available for shipment to areas in need," and eyes, bone marrow and blood. And these events received responses from about 20 tissue banks have also spawned numerous acts of selflessness saying that more than 1,500 square feet of skin was and heroism in the transplant community as well available if needed. as the rest of America. The New York City burn centers, the Firefighters Here is a brief chronicle of some of the more Skin Bank at The New York Hospital, Cornell noteworthy developments. Medical Center, the primary burn center in New SOLID ORGANS York, and other centers in Washington reported that they received special shipments from the American There were numerous reports of the transplant Red Cross Community Tissue Services, LifeNet, community looking for alternative means of getting Ohio Valley Tissue and Skin Center, and Transplant life-saving organs to waiting recipients. Services Center at the University of Texas, Southwestern Medical Center. Perhaps the most dramatic involved LifeCenter Northwest in Seattle, where U.S. Navy F/A-18 However, as the AATB mentioned later, additional fighters intercepted a chartered flight carrying tissue was never needed because so many people in organs from a donor in Anchorage, Alaska. The the attacks did not survive. flight, which had been escorted through Canadian To meet the possible demand for corneas for air space by Royal Canadian Air Force fighters, was transplantation, the EBAA applied for, and received, forced to land in Bellingham, Washington, about 80 emergency relief from the Federal Drug miles from Seattle. Administration to temporarily suspend the Jill Steinhaus, a spokesperson for LifeCenter requirement concerning the use of test kits Northwest, told the press the grounding was due to specifically licensed for cadaveric samples. the military being uninformed because of "miscommunication." BONE MARROW Officials of Chimeric Therapies, Inc., a privately Scrambling to save the organ, LifeCenter, with the held biotechnology firm in Laguna Niguel, help of Alaska Airlines, had a helicopter waiting California, recounted how a 42-year-old lymphoma when the plane landed in Bellingham. patient in Shreveport, Louisiana, waiting for a bone In the end, five patients received the seven organs marrow transplant from a donor 1,500 miles away, donated by the Alaska patient - one double lung, received a life-saving bone marrow transplant one kidney/pancreas, one heart, one liver and the despite the air travel shutdown.

Transplant Chronicles, Vol. 9, No. 3 9 Because the patient had already begun radiation Ultimately, the response nationwide was so great and chemotherapy to treat the lymphoma before the that blood centers urged potential donors to make attacks, the bone marrow transplant had to be appointments, something they had been doing to no performed immediately or the patient would die. avail, because the shelf life of the donated blood is Collaboration between the National Marrow Donor only 42 days. Program (NMDP), LSU Health Sciences Center in According to an article in on October Shreveport, Chimeric, and the Quick International USA Today 25, the American Red Cross has begun destroying Courier saved the patient's life. more than 10,000 pints of blood; about four percent According to the release, "With no air transplant of the 250,000 pints the agency collected available, and the intended courier from Shreveport immediately following the attacks. diverted and grounded in Atlanta, the employees of The ABC stopped taking blood when it became Chimeric volunteered their services as drivers. One apparent there were few survivors from the attacks. volunteer drove from Chimeric's processing center to the donor harvest site, a 575-mile trip, to pick up Beneficiary of family's decision to donate is deceased the donated bone marrow. He returned with the daughter's mother marrow to Philadelphia for the 12-hour cell processing. During this time, other employees at In an ironic twist of fate, the beneficiary of a Chimeric continued attempts to arrange transport family’s decision to donate the organs of their fatally for the marrow. Quick International Courier, a high injured child was the youngster’s mother, who had priority transportation service that specializes in been on the waiting list for a kidney transplant. sensitive medical shipments, accepted the challenge, obtained clearance from the Federal Three-and-a-half-year-old Elise Badillo of Aviation Authority for the emergency flight and the Burbank, Illinois, was critically injured on October transplant was performed on time.” 13, during a thunderstorm. She was struck on the head by a falling tree limb and was taken to the The NMDP said that on any given day it collects, University of Chicago Children’s Hospital. A huge transports or transplants at least 14 blood stem cell extended family of grandparents, aunts, uncles and donations — marrow, blood stem cells and cousins quickly arrived to support Elise’s mother, umbilical cord blood. Michele Garibay, and father David Badillo. Attending physician Chris Clardy told the frightened BLOOD/TERRORIST ATTACKS family that the prognosis for the unconscious child A press release issued on September 12 by the was very grim. New York Blood Center (NYBC) summed up the During the family’s vigil, Dr. Clardy, a kidney American public's response to the attacks on the specialist, noticed that Garibay had a dialysis World Trade Center and the Pentagon. access and subtly asked about her condition. "Yesterday's tragedy brought out the best public Garibay reported being diagnosed with lupus at age spirit and generosity of the people in the New 17 and said she developed symptoms only in her York/New Jersey metropolitan area," the release kidneys. She had been on dialysis for the past three said. The NYBC estimated that in the first 24 hours years and was awaiting a transplant. Her siblings after the disaster, it handled 12,000 phone calls and cousins had offered to donate kidneys, but not and collected 5,000 units of blood, more than one family member was a match. Dr. Clardy tripling its usual daily donations. "Donors waited realized that if Elise did not survive, she might be a for up to eight hours while hundreds of people at suitable donor for her mother. He said nothing to each site were processed to donate," they added. the family about his hunch, but discussed the idea with other doctors as well as officials at the According to the America's Blood Centers’ (ABC) Regional Organ Bank of Illinois (ROBI). He then newsletter, blood centers from all over the U.S. developed an ethical protocol to follow in the event worked together to find ways to send blood to the of Elise’s death. disaster sites despite the air travel shutdown. For example, a shipment of 1,000 pints of blood from Four days after the accident, tests showed that Central Florida Blood Bank was taken to a New Elise was brain dead. Dr. Clardy informed the York airport by a medical courier service that family and asked whether they wished to donate the received permission to fly on September 13. The child’s organs. Since she had personal experience Bonfils Blood Center in Denver, Colorado worked with the waiting list, Garibay said she supported with the military to send 300 units to the Teterboro organ donation, and Badillo agreed. With that Airport in New Jersey. decision made, Dr. Clardy suggested to Garibay that 10 Transplant Chronicles, Vol. 9, No. 3 she might be a good candidate to receive the develop new strategies to increase donation and kidneys. Initially shocked and stunned, Garibay help ease the gap between the number of organs said she wasn’t sure she could accept the organs. donated and the number of Americans being added Ultimately, she decided that her daughter would to transplant waiting lists. For the first time in late have wanted it that way. Through the transplant September, the waiting list for a kidney topped Elise would live on in her mother in a special way. 50,000. The next morning, surgeons at Rush-Presbyterian- St. Luke’s Medical Center in Chicago transplanted Department of Health and Human Services (HHS) Elise’s kidneys, both about 60 percent of the size of Secretary Tommy Thompson committed almost $10 adult kidneys, into Garibay. Elsie’s liver was million over the next three years to 12 organizations donated to a child in Pennsylvania. who competed for the funding. Both kidneys are expected to grow to adult size Some new strategies to be addressed by the new within three to six months, according to Garibay’s grantees include: Altering the approach to donor families during physician Deepak Mital. The kidneys are the consent discussion. functioning normally. Garibay was discharged from Utilizing a statewide, comprehensive organ and the hospital just four days after surgery. Mital said tissue donor registry system. there is less than a 10 percent chance that the Involving attorneys in discussing donation with lupus will damage the new kidneys. clients. The transplant "raised a lot of interesting issues," Motivating hospital-based medical personnel to Dr. Clardy said. He explained that he did not get more involved in donation activities. broach the subject of donation while Elise was alive The first-year funding, approximately $3.3 million, to prevent the family from being conflicted over is part of the secretary's "Gift of Life Donation decisions about her care with transplant as a Initiative" announced last April. The new grantees possibility. Dr. Clardy also said it was important had their first meeting with HHS' Health Resources that the family first decide whether to donate the and Services Administration Division of organs without the complication of thinking of the Transplantation officials in November. mother as a recipient. The HHS currently has 22 ongoing projects Joel Frader, MD, a professor of medical ethics at totaling $23 million studying ways to increase organ Northwestern University Medical School in Chicago, and tissue donation, in addition to the 12 new said the heartbreaking situation definitely posed grantees. challenges to doctors. "You [don’t] want to put this woman in the position of having to deal with the The new grantees and a description of their theoretical question of choosing herself or her project follows. (The dollar amount is for the first daughter." year). Carolina Donor Services, Durham, NC — Although there was a good chance that Elise ($373,000) — Individual and Campus-Wide would be a suitable donor, it wasn’t a certainty. Interventions to Increase Donation Intentions Families can ask that a person’s organs go to a Among African-American College Students specific individual, but because of matching and Cleveland Clinic Foundation, Cleveland, OH — other considerations, this doesn’t happen often, ($293,123) — Utilizing the Structure and according to Kim McCullough of ROBI. Resources of a Multi-Hospital Health System to On October 22, the day Elise was buried, Garibay Improve Organ Donation Rates said she felt the strongest she had in a long time. Intermountain Organ Recovery System, Salt But her heart is broken. "She gave me three and a Lake City, UT — ($391,578) — Improving Organ half years of the most happy days of my life, and and Tissue Donation through a Comprehensive before she left, she gave me the greatest gift of all," Donor Registry and Statewide Community Garibay said. " I would give anything for her to still Outreach Campaign be here." LifeNet Organ Procurement Organization, Virginia, Beach, VA — ($266,087) — Replication HHS awards 12 organizations $10 million to develop of Family Communication Protocol to Increase new strategies to increase organ/tissue donation Organ and Tissue Donation National Kidney Foundation of Illinois, Chicago, On October 2, the federal government announced IL — ($272,017) — "Corporate Contributions for a new round of funding to help the growing list of Life" Supporting Organ/Tissue Donation people waiting for transplants. The funding will help Awareness in the Workplace Transplant Chronicles, Vol. 9, No. 3 11 North Mississippi Health Services, Tupelo, MS important determinants of the survival of shipped — ($153,028) — Intervention Evaluation for allografts, but the effect of one offsets the effect of Organ Donation in Two Mississippi the other," the authors wrote. They found no Communities significant association between shipment and the North Shore Long Island Jewish Health System, one-year rate of allograft survival among kidneys Great Neck, NY — ($294,861) — A Systematic that were matched with the donor at all six HLA Model for the Improvement of Communication loci. Similarly, beyond the first post-transplant year, with Family Members about Death and they said shipment had no effect on graft survival Imminent Death in a Non-Transplant Hospital regardless of the degree of HLA matching. Organ Procurement Agency of Michigan, Ann Arbor, MI — ($317,630) — Measuring the "Shipped allografts that are better matched may Effectiveness of a Culturally Sensitive Approach have a short-term survival benefit as compared with to Improving Attitudes towards Organ Donation organs that are less well matched and transplanted in the Arab-American/Chaldean Community locally," Dr. Mange and associates concluded. Trustees/University of Pennsylvania, New blood filter allows kidney transplant between Philadelphia, PA — ($418,460) — A Study of the people of different blood types Presumptive Approach to Consent for Organ Donation A new blood filter could significantly increase the University of Miami Organ Procurement Organization, Coral Gables, FL — ($279,699) — number of living donor kidney transplants by A Model Intervention for Increasing Intent to facilitating transplantation between people of Donate in Primary Care Centers and Churches different blood types. in Miami-Dade County, Florida Gunnar Tyden, MD, a professor of transplantation University of Wisconsin Hospital and Clinics, surgery at Huddinge University in Stockholm, Madison, WI — ($196,924) — A Model for the Sweden, said the new device allowed a 20-year-old Implementation of Donation after Cardiac Death patient with type O blood to receive a kidney (DCD) Protocols donated by her father, who has type A blood. "The Upstate New York Transplant Services, Buffalo patient is doing excellently," Tyden reported. "She and Erie, NY — ($80,425) — "Legacy for Life" has gone past the danger period. If nothing has Lawyers Role in Organ and Tissue Donation happened so far, then nothing probably will." Education Tyden performed the surgery using a filtering Long distance shipping increases risk of failure of device called GlucoSorb, manufactured by the cadaveric mismatched kidneys Swedish company Glycorex Transplantation AB. The filter, expected to reach the market soon, works The shipment of cadaveric kidneys increases the by removing blood group antibodies directed against risk of failure of HLA-mismatched grafts during the the donor graft. first post-transplant year, according to a study published in the October 25 issue of the New To prevent the patient from producing antibodies England Journal of Medicine. to the donor’s blood group, Tyden administered the Kevin Mange, MD, and colleagues at the monoclonal antibody rituximab. So far, it is University of Pennsylvania in Philadelphia used working, and there are no complications. Tyden UNOS data to identify 5,446 pairs of cadaveric acknowledged that rituximab adds another drug to kidneys (10,892 allografts) in which one kidney was the immunosuppressive regimen, possibly shipped and the other was transplanted locally. increasing the risk of infection. "But there’s been no After adjustment for the degree of HLA-mismatch- problem with the filtration of blood," he said. ing, the researchers found that shipped kidneys with HLA-mismatches had a 17 percent higher rate "This opens the possibility for willing and of allograft failure within the first year after potential donors who don’t have the same blood transplantation. This effect, they said, could be type as the kidney patient," said Tyden. "Now, a explained by the longer duration of cold ischemia husband can donate to his wife, a father, to his coupled with the more frequent loss of allografts in daughter, even if they have different blood types. the first year due to acute rejection. This could double the number of kidney transplants from living donors." TC "Our findings suggest that the degree of HLA- mismatching and the duration of cold ischemia are

12 Transplant Chronicles, Vol. 9, No. 3 SAVE THE DATE!

The National Kidney Games-exclusive theme park Donation Awareness, the Donor- Foundation’s 2002 U.S. tickets, as well as Games’ Recipient Golf Outing, the Donor Transplant Games will return to credentials will be available upon Recognition Ceremony, the Disney’s Wide World of Sports™ check-in at the hotel. National Donor Family Quilt Complex, June 25-29. We are Pinning Ceremony, and the first- looking forward to topping the ever Living Donor Recognition success of the last Games, which event. In addition to the Giving, brought more transplant Grieving, Growing™ workshops, recipients together than any there will be a special Games event in history. Although the orientation for donor families. location is the same, improve- ments promise to make the 2002 Transplant professionals can Games better than ever. attend the Transitions in Transplantation: A Continuum of The on-site registration process Care™ during the Games. The has been streamlined and will be conference focuses on how held indoors, in the air-condi- transplant professionals can tioned Milkhouse (formerly After registration and dinner, assist recipients and donor Fieldhouse) over two days. The the Opening Ceremonies will families in dealing with their life’s Milkhouse will also house the feature the parade of athletes and changes. Games Expo, featuring donor families, as well as informative displays from our celebrity guests. A Dessert Party– Closing Ceremonies will feature Games’ sponsors and other organ a great time for participants to the Jerry Cound Outstanding and transplantation-related catch up with old friends and Athlete Awards and other special organizations. For the first time, make new ones — tops off the awards followed by an all-you- the two-day Games Expo will evening. can-eat Closing Barbecue party. feature educational seminars for all participants. Many special events and Contact the National Kidney activities have been planned for Foundation for 2002 U.S. Athlete housing has been athletes and other special Games Transplant Games registration centralized so that all team guests. These include a Coffee materials at: members can stay close together, House, a nightly Social Lounge, [email protected] or with the All-Star Resort serving the 5K Race for Organ & Tissue 800-622-9010. TC as the main Games hotel.

A WINNING TEAM!

Team USA, sponsored and managed by the NKF, recently competed in the 13th World Transplant Games, under the auspices of the World Transplant Games Federation, held in Kobe, Japan. The team earned a total of 67 medals – 21 gold, 27 silver and 19 bronze. The 67 athletes, each an organ transplant recipient, participated in track and field, swimming, badminton, tennis, volleyball, table tennis, cycling, golf and bowling competitions. The 13th World Transplant Games welcomed more than 800 athletes from 30 countries. Held from August 25 through September 1, the Games also featured a Donor Family Recognition Ceremony in which pieces of the "Patches of Love" donor family quilt were displayed.

Transplant Chronicles, Vol. 9, No. 3 13 SPOTLIGHT ON… Ohio’s Miami Valley Local transAction Council

The transAction Council was established by the National Kidney Foundation in 1996 to ensure a better quality of life for transplant recipients and increase the availability of all organs for transplantation. The Council provides recipients and their families with information and programs in education, fitness and research. The Council is part of the National Kidney Foundation, the largest not- for-profit organization serving individuals with all types of organ transplants (heart, lung, liver, pancreas, kidney and more) and is the largest group of transplant recipients — hosting 6,000 members. Miami Valley’s float to promote organ and tissue Local transAction Councils provide recipients with donation won second place a forum to address the needs of recipients in their communities. transAction Marble Cake The Miami Valley local transAction Council boasts 47 active members and a mailing list of 130 people. 3 cups of flour Working closely with the local organ procurement 1 cup of sugar 1 teaspoon salt organization and the NKF Ohio Affiliate, the Council 1/4 cup of margarine or butter actively works to make lives better for recipients by 1 1/2 cups of fat free vanilla ice cream hosting ball games and picnics, and by supporting 1 teaspoon of vanilla extract newsletters, cookbooks and more. It actively 3 egg whites promotes organ and tissue donation. Currently, the 2 teaspoons of baking powder 2 tablespoons of unsweetened cocoa Council is preparing for a holiday party and 10-year 1 1/2 cup of fat free milk anniversary next May. We commend the spirit and determination of the members and support them in Directions their quest to help recipients with the challenges of transplantation. Preheat oven to 350 degrees F (175 degrees C). Grease and flour a nine inch round pan. For information about how to join the transAction Council, or how to proceed with a local council in • Place flour, baking powder, salt, sugar, butter or your area, call transAction at (800) 622-9010. margarine, ice cream, egg whites, vanilla, and milk into mixing bowl. Beat slowly to moisten, and then beat with an electric mixer at medium speed for about 2 minutes until smooth. Reserve 3/4 cup batter; pour the remainder into pan.

• Stir cocoa into the 3/4 cup reserved batter. Drop by spoonfuls over top of white batter. Using a knife, swirl the cocoa batter into the white batter to incorporate it in a marble effect.

• Bake in preheated oven for 30 to 35 minutes,

until an inserted wooden pick comes out clean. TC

A scrumptious marble cake was baked and served by Miami Valley transAction members at their celebration party.

14 Transplant Chronicles, Vol 9, No. 3 Sexuality, Intimacy and Your Heart By Oliva Alban Kuester, MSW, CSW "When can I start having sex?" preventing you from enjoying a satisfying sexual relationship. After receiving a transplant, you and When my recipients ask me this question, after your significant other have a right to the pleasure of their heart and lung transplants, I can tell that they sex and intimacy. Your health care team can give are well on their way to healing. Such a question you tips about skin and hair care, as well as suggest shows a healthy and positive attitude about ways to minimize the stress on your body. Dr. regaining a sex life. Physical health is dependent on Reichman suggests that her diabetic patients drink emotional well-being and feeling connected through a fruit juice, or other sugar-based drink, before closeness and contact. A fun and satisfying sex life lovemaking to help blood sugar levels remain stable. can help reduce your tension. A loving glance, a kind word, and even a hug or a kiss can help to My years as a transplant social worker have taught dissolve your stress. me that recipients who have lived through life-and- death experiences tend to look for more meaning in My transplant colleagues and I pay close attention their relationships. Support groups provide an to both our recipients and our transplant candidates excellent venue to form meaningful friendships with when it comes to their sexual health. We realize a others. change in sexual desire can accompany the transition from candidate to recipient. Research by Dean Ornish, MD, a cardiologist at the University of California San Francisco School of Reasons for sexual dysfunction during a chronic Medicine, demonstrated that arteriosclerotic build- illness, or after a transplant, range from the up in the coronary arteries could diminish over a physical, such as medication side effects, to the period of months if patients adhere to a low fat diet emotional, such as the fear of damaging a new and manage stress effectively. He suggests yoga, organ and unattractive perception. relaxation and meditation. Sexuality is a Chronic illness affects how we believe natural progression following intimacy others view us. As a recipient you may for recipients in a coupled relationship. decide that you are unattractive and Dr. Ornish says, "Love and intimacy are conclude that you are unlovable. Sure, at the root of what makes us sick and transplantation and illness may cause a what makes us well. If a new drug had change in your appearance, but you just the same effect, virtually every doctor in need time to adjust to your new look and the country would be recommending it learn ways to make the most of your life. for their patients." Sexual problems abound in the general What is intimacy? population, so it makes sense that recipients and sufferers of chronic illness Intimacy is as simple as eye-to-eye have an added burden to cope with when contact, a smile, a kiss, a touch, or a dealing with their sexual concerns. Side loving squeeze. Intimacy is also playing effects of transplant medications and the and experimenting together, and illness itself may influence your desire, arousal, laughing at trivialities. Intimacy is when you know orgasm and resolution. These roadblocks can be what makes the other person feel loved. It is sharing traced to a lack of intimacy, too. Women with your feelings, secret dreams, goals, thoughts and transplants go through complex hormonal changes. fears. Sexuality is only one part of intimacy. Often, they do not discuss any of this with their Sexuality usually follows intimacy. doctor. Gynecologist Judith Reichman, MD, author You can increase intimacy with someone you care of the book, I’m Not In The Mood, has found that about by doing a few simple things. Set aside some only three percent of women discuss sexual special time to be together. Plan activities that will dysfunction during a routine visit with their be fun for both. Rediscover the child in each of you gynecologist. About 16 percent mention sexual by learning how to play together. Share jokes. problems only when directly questioned. Compliment each other. Touch each other lovingly. Health professionals easily overlook sexual Share new hobbies and communicate often. It is concerns when other health issues are present. worth the effort. After a transplant, when life begins That is why it is important that you bring up your to normalize, get ready to face another challenge – concerns with your social worker, physician or making your life together special. health care provider. They can provide resources to help you and your partner conquer the obstacles continued on page 16

Transplant Chronicles, Vol. 9, No. 3 15 What Happens to Organ Transplantation When the FAA Grounds All Flights? By Suzanne Lane Conrad, RN, MS, CPTC

The terrorist attacks of September 11 ended or of organs to waiting recipients, and many disrupted the lives of many innocent people. transplants occurred during this period. In an e- Subsequently, the ripple effect, as it is being called, mail to all 59 Medicare-certified OPOs in the has had an impact in every sector of society, country, UNOS encouraged organ recovery including organ donation and transplantation. personnel to share organs within local service areas Much of what is accomplished in organ donation is and avoid the need for air transit, while maximizing done by the convenience of charter and commercial opportunities for transplantation. flights. With the immediate threat behind us, OPOs can When the United States was attacked, the again charter flights and share organs across wide Federal Aviation Administration immediately, and geographic areas. Donor kidneys are routinely sent understandably, grounded all flights. cross-country to well-matched recipients. Since the terrorist attacks occurred, these shipments have Unfortunately, it caused a person waiting for a been subject to extra scrutiny. More time is liver transplant in California to miss out on this required to ensure that the kidney box is well precious opportunity when the liver of a New packaged and labeled and that all of the air cargo Mexico organ donor could not be transported by paperwork is in order. Like all other aspects of air ground within the required time for the organ to be travel since the tragedy, the length of time required transplantable. A similar incident prevented the to facilitate transport has increased. arrival of a charter jet, carrying a surgical team and a donor heart from Alaska to Washington State, So far, OPOs have adjusted to the restrictions when two U.S. Navy fighter jets forced it to land. imposed to ensure public safety. As the ripple effect When the requisite permission was obtained, the continues, it is likely that airlines will further transplant team with the donor heart was allowed reduce the number of daily flights. If this occurs to finish the journey via helicopter. and the eliminated routes affect certain cities, some OPOs will face significant challenges, and new These stories made headlines shortly after the means of accomplishing organ donation and terrorist attacks. In most of the country, organ transplantation under these circumstances will be procurement organization (OPO) professionals determined. A consequence of commercial air route effectively managed the recovery and disposition of reduction may be additional lengthening of the transplantable donor organs during the air travel process from the time a donor family consents to ban. The United Network for Organ Sharing (UNOS) donate, to the delivery of the organ, to the waiting

suspended geographic equity rules in the allocation recipient in the operating room. TC

support each other and make accommodations to Sexuality… develop a positive level of sexuality and intimacy. So continued from page 15 go out there, have fun, be intimate and enjoy your partner. You only have something to gain. T If you become isolated, it will add to the C psychological stress of your illness. Sexual Oliva Alban Kuester, M.S.W., C.S.W., currently a deprivation may result for you, or your partner. It field associate and adjunct lecturer at the University can mean the loss of an important means of of Michigan School of Social Work, was a transplant pleasure at a time when it is most necessary. social worker at the University of Michigan Health Sexuality is a way to express ourselves. When we System, Heart and Lung Transplant Programs. are forced to give it up, its loss can be devastating. Therefore, it is important to openly discuss ways to

16 Transplant Chronicles, Vol. 9, No. 3 ask the pharmacist Treating Hyperlipidemia After Transplant By Weston Bush, PharmD

Hyperlipidemia, or high cholesterol, is a and saturated fat diet that is right for you. A safe condition that occurs frequently in transplant exercise program, followed consistently, can lower recipients as well as in the general population. the "bad cholesterol" (LDL) and raise the "good During a cholesterol screening, four values of lipids cholesterol" (HDL) over time. If these lifestyle (fats) are usually measured: changes fail to lower cholesterol, lipid-lowering medication may be necessary. 1) Total cholesterol (TC) 2) Low-density lipoprotein (LDL) The most frequently prescribed lipid-lowering 3) High-density lipoprotein (HDL) drugs are the HMG-CoA reductase inhibitors, 4) Triglycerides (TG) otherwise known as "the statins." The statins inhibit cholesterol production in the liver, most of Of these cholesterol values, HDL (good which occurs while we are sleeping. For this cholesterol) is the only one considered beneficial reason, most physicians recommend that you take and thus best when the value is high. the statins in the evening. An exception is Physicians routinely screen their adult patients atorvastatin, which can be taken during the day or for high levels of cholesterol and/or triglycerides, evening. since having high levels of total and LDL Statins may cause pain or damage to muscles cholesterol along with a high level of triglycerides (rhabdomyolysis), or elevate liver enzymes. Your may cause plaque build up in the arteries that doctor may order tests to look for muscle damage supply blood to the heart. Early detection of high or determine the level of an immunosuppressant in cholesterol is important because diet and exercise your blood. Liver damage from the use of statins is can help lower cholesterol levels. In addition, your rare. Recipients taking a statin should know that, doctor can prescribe a variety of lipid-lowering used in low doses and routinely monitored, they medications. are widely accepted as safe and effective. Transplant recipients may have other risk factors Bile acid sequestrants are effective in reducing for hyperlipidemia and heart disease. A history of cholesterol in some patients by binding to bile (a diabetes, cigarette smoking, a family history of cholesterol-like molecule) in the intestine and heart disease, low HDL cholesterol, obesity and age helping to remove it from the body. Many (for men over 45, for women over 55), also transplant recipients experience difficulty with contribute to hyperlipidemia in transplant frequent administration, which is sometimes recipients. Some immunosuppressive medications, necessary, because the bile acid sequestrants bind such as corticosteroids, can raise cholesterol to other medications and reduce their absorption. and/or triglycerides and cause hyperlipidemia in a Your doctor will determine the method of recipient who had normal cholesterol before the administration that is best for you. transplant. Cyclosporine (Neoral, Sandimmune, GenGraf) and sirolimus (Rapamune) may also Niacin (nicotinic acid or vitamin B3) is one of the interfere with cholesterol and triglyceride best drugs for improving all lipid levels and raises production. Tacrolimus (Prograf), azathioprine HDL more than any other lipid-lowering (Imuran) and mycophenolate mofetil (Cellcept) are medication. Niacin can be bought over-the-counter less frequently associated with developing and is relatively inexpensive. Unfortunately, it has hyperlipidemia. To reduce the chances for some bothersome side effects (flushing, hyperlipidemia, physicians may use the lowest dose gastrointestinal distress), and may worsen some possible of a coricosteroid to prevent rejection, conditions (diabetes, gout) particularly when change from one immunosuppressant to another, combined with cyclosporine. Timed release (long- or add a lipid-lowering medication. acting) niacin causes less flushing, but in large doses may increase the chances for liver toxicity. Lowering lipids begins with lifestyle changes. A licensed dietitian can recommend a low cholesterol continued on page 18

Transplant Chronicles, Vol. 9, No. 3 17 A Hearty Laugh, A Hearty Heart By Allen Klein, MA, CSP "A clown is like an aspirin, only he works twice as fast." *Groucho Marx "A light heart lives longer." * Shakespeare Research has long associated really good laugh, you frequently these days. She recently told me anger and hostility with increased have to take in a big breath of air. about an experience she had with coronary-heart disease risk. Now, Laughter is also a great muscle a van service that she uses to go a recent study from cardiologists relaxer. How many times have to her doctor's appointments. at the University of Maryland has you laughed so hard that you One day, she was the last shown that laughter may have a could hardly get out of your patient in the doctor's office. It beneficial effect on the heart. chair? was six o'clock and the van did The study found that people Finally, and perhaps the reason not show up to take her home. with heart disease were 40 it might be good for a healthy The doctor informed her that she percent less likely to use or see heart, laughter decreases the could not wait in his office humor in situations than those secretion of cortisol, a stress because he had a meeting to without heart problems. People hormone. attend. He said he would take her downstairs to a pizza place next with heart disorders said they So now that we know that door where she could wait for the don't laugh as much and are laughter is good for our hearts, van. He would even call the more angry and hostile than their how can we get more of it into service and make sure someone healthy counterparts. our lives? It’s simple; you just was coming. When the van still It is still not clear how laughter have to look for it. It is all didn't show up, my mom went can directly help the heart, but around. Not too long ago, for over to the counter and asked the other studies have shown that example, I saw a sign in the guy making the pizza if they laughter is beneficial to every laundromat that said: When the deliver. "Of course, we do," he system in the body. machine stops remove all your replied. "What would you like?" clothing. You know what? I did! For example, when you have a Mom said to him, "I'd like a good hearty laugh, your heart Also, don't forget to poke fun at mushroom pizza," then added, rate and your blood pressure go yourself once in awhile. It's low "and I'd like to go with it!" TC up, and then dip below normal risk and if you don't laugh at Allen Klein, also known as "Mr. when you stop laughing. In other your self-directed kidding, maybe Jollytologist," is an award-winning words, your heart is getting a it's a sign that you are taking professional speaker and best- workout similar to aerobic yourself too seriously. selling author. His books include exercise. Finally, learn to laugh from The Courage to Laugh and The Laughing is good for your someone else. My mom, who is 90 Healing Power of Humor. respiratory system, too. After a years old, keeps me laughing

You and your doctor can find the best treatment ask the pharmacist options for you. Take an active part in the continued from page 17 monitoring process by discussing side effects and concerns with your transplant team so that you Fibric acids (gemfibrozil, clofibrate) moderately can get the benefits of therapy by lowering the risk reduce LDL, and moderately increase HDL, but of heart disease in the safest and most effective substantially reduce triglycerides. Fibric acids manner. T should not be used in patients with kidney or liver C failure. The combination of niacin with a fibric acid drug can increase the chances of liver and muscle damage and should only be used as a last resort and with adequate monitoring.

18 Transplant Chronicles, Vol. 9, No. 3 marking a milestone He’s Got Heart! By Bobby Seeback and Karen Cuzio

In 1989, a sanitation truck hit band, Bobby experienced all that for a reason and when Bobby Seeback as he rode his shortness of breath. Medical tests the nurse put the babies in my motorcycle. Bobby, then a 22- revealed congestive heart failure. arms, I knew what that reason year-old singer and guitarist from Bobby had only months to live. was. It was to help people and Long Island, New York, wasn’t His doctors decided that a heart raise my sons," says Bobby. hurt from the accident, but his transplant was not an option x-rays revealed a surprising find because of his cancer. A Today, this 40-year-old father, — he had Hodgkin’s disease, a physician’s assistant took Bobby sees his life as a real blessing. cancer of the lymph nodes. The aside and encouraged him to Along with friends and fellow removal of his spleen and pursue a heart transplant on his musicians, Dave Patrick, Randy radiation treatments, while not own. London, Bill Holland, Crispy pleasant, allowed Bobby to Chicken and Philip Henry, Bobby continue enjoying life, singing Taking a proactive role in his has formed the Transplant Band and playing guitar in his band. health care, Bobby wrote a letter to promote organ donor to Dr. Ronald awareness. The band’s song Drusin, a "Transplant" includes passionate cardiologist at and inspirational lyrics like, Columbia- "Boom, boom, boom—I Got a

Presbyterian Heart From Another Soul!" TC Medical Center in New York City. The transplant team was impressed by Bobby’s resolve to survive. They agreed to list Bobby for a Bobby Seeback with sons, Jonathan (right) and donor heart if he Daniel (left). could stay in remission for a Two years later, the Hodgkin’s year. He did, and his name was returned. Bobby’s appendix was added to the list. removed and he endured eight grueling courses of chemo- While recording an album with therapy. They didn't work. He his band, Bobby’s body finally needed surgery to remove the gave out and he was hospitalized. Charles Rosenberg is going strong lower lobe of his left lung. Bobby He was battling for his life. Good with his kidney transplant of 30 had to stay encased in a plastic news finally came his way when years. He is preparing to pursue his during his hospital stay, a donor passion this winter — cross-country bubble to survive. A stem cell skiing. Charles also enjoys hiking and transplant saved his life. His own heart became available. It was St. golf. A winter and outdoors lover, stem cells were removed from his Patrick's Day, 1996. Charles has traveled to the Antarctic, body prior to additional radiation, Alaska and Colorado. Charles tells us After his transplant, Bobby fell and then reintroduced to boost that "Outdoor exercise renews the in love, got married and his wife spirit and creates challenges to keep his immune system. Nancy gave birth to twin boys, one healthy and satisfied. There is always another hill, trail or mountain In 1995, while singing with his Jonathan and Daniel. "I survived to explore. The adventure never ends."

Transplant Chronicles, Vol. 9, No. 3 19 poetry corner donor family corner poetry corner Secret Garden A Letter Helps A Lot By Carolyn M. Ellis Keep a secret garden where your hopes and wishes My 18-year-old son, Ray, died in November of 2000. In December, I received a letter telling me bloom. about Ray’s organ recipients. I shared this letter A garden filled with sunshine where there’s never a with our family and friends and it helped us spot of gloom. cope with his death. Keep a secret garden where no cares or troubles grow. While I appreciated the letter, I wanted to know A garden planted deep within, safe from the rain and more. However, I didn’t compose a letter until snow. May of the following year. In early fall, I received Keep a secret garden where you can wander, dream a response from the kidney/pancreas recipient, and rest, named James. A garden where your soul can go when you don’t Unfortunately, the pancreas was rejected but feel your best. the kidney is doing fine. I was going through a Keep your garden bright and clear and free from any low point in my life and hearing about him strife. helped me a great deal. Tend it well with loving thoughts each day throughout My father-in-law had been on kidney dialysis for your life. seven years before he died; it was nice to know And when the burdens of this world are beating at that my son helped someone on dialysis. I am your door, working on a reply to James and I hope to hear Go into your garden and be filled with peace once from the other recipients, too. more. T C Donating Ray’s organs has helped us deal with Carolyn Ellis, the youngest of six children, is a native of our loss and hearing from the recipients has New Orleans. She has one son and four grandchildren. been a blessing. I hope Ray’s gifts allow the Carolyn attributes her love of God, and his grace and recipients to have full and happy lives. TC mercy, as the reason she is here. Sherry Oretega is a donor mom from Tucson, Arizona.

The National Kidney Foundation wishes to take this opportunity to gratefully acknowledge Novartis Pharmaceuticals Corporation for its sponsorship of Transplant Chronicles for the past six years.

National Kidney Foundation 30 East 33rd Street New York, NY 10016