Transplant Chronicles

Volume 6 A publication for transplant recipients of all organs and their families, Number 1 published by the National Kidney Foundation, Inc.

ow could I look down into believed we had a chance, and I hisH crib one more time knowing their responses were “like finding God would take him from me? a needle in a haystack,” or like This is my first grandchild who I “winning the lottery.” Not only are Hurt wanted so very much. blood type and cross match very important, the size of the donor My Cody was born with a heart plays a big part, too. His hypoplastic left heart, meaning he little chest would only accommo- So Bad only had two chambers instead of date a heart maybe four months the normal four. He was born at older than Cody, and his time was by Joyce Rasmussen Unity Hospital, transferred to running out. Children's Hospital, then a week later transferred to the University Cody already had lived longer of Minnesota, where for five weeks than the doctors thought, but we hoped and prayed for a heart soon it would be too late. I was transplant. Soon I was filled with trying to keep my kids’ emotions doubts and anger, which aroused down so that when the time came many questions. How could this for us to say goodbye to our dear beautiful child be created with little Cody, we could thank God only half a heart? His heart for the short time we had with monitor told me he heard and him and accept his decision. I related, because the beat of the had come to the hospital every monitor fell from 200 beats per day, many times finding my son minute to a relaxed 140. Rob leaning over Cody's crib, his shoulders shaking, and I knew I I had to stay strong for my would find his eyes filmed over kids, who needed to lean on me. with tears. For the first time in They were so very sure that Cody my son’s life, I could not fix this. I After his heart transplant, would receive a new heart and could not make Cody well, and I Cody “continues to grow everything would work out well. couldn't do anything but watch and give warmth and love As a nurse, I knew that our my only son suffer with this grief. wherever he is,” says his chances were slim. I had asked I felt too useless and I HURT grandmother. the doctors I worked with if they SO BAD. Continued on page 2 transAction! Transplant Chronicles is a COUNCIL Program of the National Kidney Foundation, Inc., supported by Pharmaceuticals Corporation

National Kidney Foundation® ✍ editor’s desk Transplant Chronicles

Welcome to another edition of Transplant Chronicles is published by Transplant Chronicles. This issue the National Kidney Foundation, Inc. once again is filled with the most Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc. current facts and stories of Editor-in-Chief: transplantation. In fact, we were Beverly Kirkpatrick, LSW unable to print all submissions Philadelphia, Pennsylvania that were presented to our editorial Editors: Ira D. Davis, MD Vanessa Underwood, BS, staff, but have plans to place them Cleveland, Ohio AFAA, ACE Plaistow, New Hampshire in the next issue. Maurie Ferriter, BS Lakeland, Michigan Jim Warren, MS Beverly Kirkpatrick San Francisco, California Thank you to all who responded Cheryl Jacobs, LICSW Minneapolis, Minnesota Becky Weseman, RD, CNSD, LMNT to our “Hot Topic” question—responses can be Omaha, Nebraska Teresa Shafer, RN, found on page 14. MSN, CPTC Laurel Williams, RN, MSN Ft. Worth, Texas Omaha, Nebraska At this time of the year, most are probably Nancy Spinozzi, R. Patrick Wood, MD planning summer vacations or hopefully a trip to Boston, Massachusetts Houston, Texas

the Transplant Games. Whichever it may be, take Editorial Office: some time to read Cheryl Jacobs’ article for some National Kidney Foundation, Inc. 30 E. 33rd Street, New York, NY 10016 travel tips! Have a great summer, and for those (800) 622-9010/(212) 889-2210 T http://www.kidney.org traveling to Columbus, Ohio, I’ll see you there!!!!! C Executive Editor: Editorial Director: Beverly Kirkpatrick Diane Goetz Gigi Politoski Managing Editor: Editorial Manager: for the Editorial Board Sara Kosowsky Marla Behler, CSW Design Director: Oumaya Abi-Saab

answered. Rob's voice came over the line. He was I Hurt So Bad crying and I could not understand what he was Continued from page 1 saying. Finally, I realized he was trying to say that a heart had been found and Cody was being We were told by the doctors that Cody was in prepped for surgery. I could not believe what he desperate need of a transplant and if it did not was saying. As the shock from Rob's news began take place soon, it would be too late. They had to fade, I again had many questions. How did been in contact with a hospital in St. Louis, this miracle happen? Missouri, that had conducted baby transplants. After a great deal of debate, we decided Cody The surgery took place in the wee hours of the should be moved to St. Louis for further morning with great success. Not only was it an attention. exact type and cross match, but it was also a perfect size. We were told the heart that Cody Each evening I held my breath when the desperately needed came from an eight-pound phone rang, waiting to hear if Cody was still with baby girl. My excitement changed to sorrow us. It was the tenth day in St. Louis (Cody was when I thought about the pain the donor family now nearly two months old) when I received the went through with the loss of their daughter. I dreaded call from Rob saying, “Our lovely little thought about how hard it must have been for Cody is not going to make it.” I yelled, “You can't them to see through their grief and pain and give up, you of all people, who has been so make such a great decision. I also thought that strong and positive. There is still some time and it was a courageous decision and I was very you have to hang in there.” I hung up the phone grateful to them. I felt for the child's and, crying out of control, began praying to God grandparents, for I knew they felt some of the for help. I HURT, I HURT SO BAD. An hour later ame emotions that I felt during Cody's struggle. the phone rang again and I forced myself to lift the receiver, knowing our prayers were not ➔

2 Transplant Chronicles, Vol. 6, No. 1 This letter was received from the donor family amounts of oxygen, he displays exemplary shortly after Cody's surgery. health. He is smart, beautiful, funny—walking, talking and doing all that a “normal” three-year- August 1993 old would do. He plays an integral part in his good health by helping to administer his own Sitting here with our hearts breaking, we medications, taking the worst-tasting wonder why such a horrible thing had to prescriptions first. happen. Why would God take such a precious child away from us? We know now that Makenna Rob and Roxanne correspond with Ross and Stef, and my husband, Wally and I correspond was never ours to begin with, rather an angel with Makenna's grandparents, Mike and Linda. sent to give life to another. Our purpose was to At Christmas each year, I send a picture album love, cherish and protect her until her task was with a year’s worth of photos showing how he complete. Makenna flies again in the heavens, has grown and what he is doing. Ross and Stef forever happy, forever without pain. When your have since given birth to a daughter named child is old enough to ask why the scar lies on Claire. She is perfect. Now I no longer feel like a his chest, tell him that an angel came down from thief in the night. I always felt we got something heaven and placed a heart full of love and joy in so special and they were left with just memories. his chest and healed the wound with kisses . . . Now they have Claire to hold in their arms along thus the scar. with loving memories of Makenna, which they will always hold in their hearts. - From those that loved her

Finally, after two and a half months, our little A reunion is planned for this summer for the Cody came home. The kids were drained families of Cody and Makenna, and how emotionally but very happy to be back home. I wonderful this will be. It will be nice to wrap my never thought I could feel such happiness. The arms around them, gather them near and love of a grandmother for a grandchild cannot whisper in their ears “thank you, I do not hurt even be told. It is unexplainable. anymore.”

In December when Cody was nearly five Looking over the past three years, I consider months old, Rob and his wife Roxanne were myself to be a very lucky and thankful lady. The contacted by the Phil Donahue Show. A donor - “needle in the haystack” was found, and the recipient show was being planned and their lottery of life was won and the “pot-o-gold at the presence was requested. Rob and Roxanne felt it end of the rainbow” is mine ... HIS NAME IS would be a good way to get information out to CODY! the public that infant organs were highly needed. They did not know it was also planned for them Editor’s Note: The decision for donor families to meet the donor parents of the child that gave and recipients to make contact is a personal one. the gift of life to Cody. This was a thrill for both Many donor families want to know that the sets of parents. Rob and Roxanne were able to recipients of their donation are well and others thank them in person, and the donor parents, wish to tell more about their loved one. Recipients Ross and Stef, were able to see their baby often want to thank their donor families. Often Makenna's heart beating in Cody (baby Makenna times it is the wish for this communication to take was born with the umbilical cord around her place anonymously. neck so oxygen was not going to her brain). The National Kidney Foundation in I am sure Makenna is thought of every day by collaboration with key organizations has her family, as we think of her, too. There is no developed National Communication Guidelines. way to explain the great joy this little child has These voluntary guidelines are intended to brought me, my family, friends and everyone provide transplant and procurement professionals that Cody touches. Without people who care in basic systems for providing information and this world, like Ross and Stef, what would we establishing methods of allowing donor families have? Certainly not our Cody. He will be three and transplant recipients to communicate with years old soon and continues to grow and give each other. For more information call NKF at warmth and love wherever he is. In spite of his 800-622-9010 or visit our Web site at T perilous beginning, often without adequate www.kidney.org C Transplant Chronicles, Vol. 6, No. 1 3 eating right

Medication Effects on Nutritional Goals by Becky Weseman, RD, CNSW, LMNT Have you ever thought about how your daily exercise plan should help in controlling weight medications, which are necessary to prevent and blood sugars. transplant-organ rejection, may be affecting your health? Physicians continue to explore new anti- Development of high blood pressure after rejection medications to provide improved transplant is common and will often depend on protection from rejection. The immuno- the specific organ transplanted and the type of suppressive drugs currently being used, such as anti-rejection medication being taken. The cyclosporine, tacrolimus, prednisone, and others, reason for the increased blood pressure is not are very good at preventing rejection, but are not always understood but, to help treat this without some down sides. What is important to condition, you should reduce the salt (sodium) know is how these medications play a role in in your diet and maintain an appropriate setting your long-term nutritional goals to keep weight. the rest of you healthy now that you have had a transplant. Loss of bone mass is also very common in patients after lung, heart, kidney, The first step is to determine if liver and pancreas transplants. any of the following medical This could be related to bone loss conditions apply to you, then take in some patients before transplant steps to see that your daily diet is as well as to the anti-rejection nutritionally balanced. High blood medication after transplant. cholesterol, high blood sugars, high Steroids given to transplant blood pressure and loss of skeletal patients can cause decreased bone mass can develop after calcium absorption in the body and transplant, in part related to the increased losses of calcium in the medications that are needed daily. kidney. You may need to add With time this can lead to a greater calcium to your diet to get an risk of heart disease and bone fractures. A adequate amount—up to 1,500 milligrams a cholesterol level greater than 200-240 milligrams day. You may also need to discuss calcium per deciliter (mg/dL) or a triglyceride level (a type supplements with your doctor. Regular exercise of fat) greater than 160-200 mg/dL is considered may also help in reducing bone loss. higher than desired, and attention should be given to lowering them. High lipid levels have It is important to understand the possible been seen in patients with all types of side effects of these necessary lifetime anti- transplants. There could be a variety of reasons rejection medications and consider for yourself for these high blood fat levels, and in some cases how to set your nutritional goals. In sum, these medications may be needed to help reduce goals should include: keeping your weight at a cholesterol levels, along with lowering of dietary reasonable level for your height or losing weight fat. if you are currently overweight, eating a low cholesterol and low saturated fat diet (one that Some transplant patients are diabetic and have is low in animal fats), avoiding foods that are increased blood sugars before transplant. Others high in salt, and drinking milk or taking a have no problems with increased blood sugars supplement to get enough calcium to keep until after transplant. There are many reasons bones strong. for an increase in blood sugars, including a patient's sex, race, body weight or the transplant All of this does not have to be as confusing as organ received. In some cases, insulin therapy it may appear. Eating a well-balanced diet with T may be necessary. Setting a realistic eating and all foods in moderation is the key. C

4 Transplant Chronicles, Vol. 6, No. 1 keeping fit Help! I’ve Started Eating and Can’t Give Up!! Living With Your Transplant For Richer or Poorer, For Better or Worse by Drew Silverman, Pharm D

t’s two o’clock in the morning and you find successful. Unfortunately, there are side effects yourselfI sitting in front of an open refrigerator. that we must try to counteract. Some of the You’re not sure why you are there or for that primary concerns are muscle weakening, change in matter what you want to eat, but you have this metabolism and a deterioration of the bone. Some voracious craving to eat everything in sight. Come medications may make you feel tired because of a to think of it, since your transplant, you have decrease in red blood cells. So are you going to eaten everything in sight. You also seem to have crumble and disappear?—Absolutely not! put on a few pounds in all of the wrong places. Perhaps you’ve even had problems with keeping Fortunately, there are many things that you your blood pressure under control. Why are you can do to counteract these side effects and live a going through these changes? What is causing healthy quality life. Exercising and eating a well- them? What can you do to control or prevent balanced diet are your keys to success. First, them? If you’re reading this thinking, “Wow, exercise prevents muscle breakdown. That’s that’s me,” you’re not alone. right, walking, running, jogging in place, or any other exercise you do on a regular basis is good It is a known fact that transplant patients have for you. Exercise has been shown to prevent major problems with excessive weight gain. Many muscle breakdown by altering the muscle people feel they gain weight because they are receptors (keyhole structures on the muscles in eating well for the first time in years. This is the body) and stopping steroids from binding to partly true, but medications you take to help you those receptors. This is like changing the shape live a healthier, more normal life may also be of the keyhole (receptors) so the key (steroids) causing you to have problems aesthetically (with doesn’t fit any more. the way you look) as well as physically. Fortunately, most of these problems can be Exercise also increases the amount of sugar controlled or possibly even prevented by good that your muscles use to make energy. This medical care, as well as exercise and good decreases the amount of sugar left in the blood, nutritional habits. Wait a minute, you mean now and can help you to keep your blood sugars that I’ve had a transplant I have to exercise and under control. It may even help to keep you from eat right? Yes you do! needing drug therapy to decrease your blood sugars. Lastly, exercise will decrease the bone Most transplant patients take steroids, such as breakdown and increase bone formations! Here prednisone or prednisolone (medrol) for an are some benefits of exercise that will help to extended period of time. The positive aspects of improve your physical condition and exercise these steroids are that they will prevent your tolerance, and allow you to build your stamina body’s immune system from realizing that it has for everyday activities. How will exercise a foreign organ. This helps to prevent rejection. counteract the side effects of the medication? Unfortunately, steroids, especially in higher Exercise . . . doses, are also responsible for causing muscle 1. Targets the metabolism, increasing the breakdown. Steroids can also cause metabolic rate redistribution of fat into your face (moon face), 2. Builds and preserves muscle strength and rear end and back (buffalo bump). Steroids have tone also been shown to cause your bones to weaken 3. Promotes fat loss by increasing the breakdown of old bone while 4. Slows the aging process preventing the build up of new bone. 5. Increases endurance, stamina, circulation 6. Increases good HDL Many of the medications involved in transplant are responsible for making organ transplantation Continued on page 19

Transplant Chronicles, Vol. 6, No. 1 5 Transplantation in “Older” Patients by R. Patrick Wood, MD, FACS

For most of us as we age, the definition of available donors, especially for kidney and liver “older” becomes a relative concept. Likewise, as recipients. the general population continues to live longer, transplantation in older patients is becoming ■ Kidney Recipients increasingly common. Because of the severe In 1988, 3,256 patients between the age of 50 shortage of aged donors in the United States and 64 and 403 patients over 65 were waiting for and the fact that the number of potential organ a kidney transplant. Ten years later, these transplant recipients is growing at a rate much numbers had increased to 13,200 and 3,186 faster than the supply of suitable organ donors, respectively. In 1995, about 29% of kidney the use of older donors would certainly seem transplant recipients were between ages 50 and justified. However, the results of transplantation 64, while 6% were over 65. using these older donors must be associated with acceptable survival rates for the recipients Age of Recipients of these organs. In addition, the success rate When you compare survival rates for people achieved with the transplantation of older aged 18 to 34 years (in the so-called prime of their patients must be equivalent to that achieved lives) at the time of transplant with the results in with younger recipients. people aged 50 to 64 or older than 65, several A review of current survival rates for older things become clear. The three-month and one- kidney, liver and heart transplant recipients as year survival rates for these three groups of well as the use of these organs from older cadaveric kidney transplant recipients are donors shows very promising results. The essentially the same. At five years post-transplant, following data, taken from the 1996 UNOS however, the rates begin to diverge. The five-year Annual Report and other sources, compares survival rate for kidney recipients between 18 and survival rates of recipients aged 50 to 64 and 34 is 88.5%. It is 72.1% in patients aged 50 to 64, those over age 65 with younger recipients. and 61.8% in those over 65. Age of Donors Donors Patients who receive kidneys from donors older In 1995, almost 30% of available donors were than 65 have a survival rate of approximately older than 50 and the number of donors older 70% at five years, while recipients from donors than 65 had increased to 272 from 35 in1988. aged 55 to 64 have a 75% five-year survival rate and recipients from donors aged 18 to 34 have a In kidney transplantation, more than 25% of survival rate of 82.5%. cadaveric donors were between 50 and 64 years of age in 1995, and 5% were over 65. In summary, older patients make up a significant proportion of those awaiting kidney Heart donors between 50 and 64 years old transplants and do as well as younger patients represented approximately 8% (206 donors) of following transplantation. At five years, older all donors in 1995. There were only 6 heart patients, perhaps due to other complications donors over the age of 65 years in 1995. associated with the aging process, experience a The data for liver donors show much greater somewhat lower survival rate. However, the five- increase in the use of older donors. In 1988, year survival rate, even for patients over the age there were only 25 liver donors between the of 65, is still quite reasonable. ages of 50 and 64. This number increased to 766 (approximately 18% of all liver donors) in ■ Heart Recipients 1995. In addition, there was only one liver In 1998, 2,132 patients aged 55 to 64 and 255 donor over the age of 65 in 1988, while in 1995, patients over age 65 are awaiting a heart this number jumped to 213. This data clearly reveals that older donors are making up a significant percentage of the ➔ 6 Transplant Chronicles, Vol. 6, No. 1 transplant. In 1995, about 53% of the patients recipients over 65. Patients who receive livers receiving heart transplants were between the from donors between the ages of 18 and 34 have ages of 50 and 64 and 141 patients were over somewhat better survival rates at all time periods the age of 65. than those who receive older donor livers. There does not appear to be any significant However, in the 1996 UNOS Annual Report, difference in the overall survival rate of heart there is no data on the five-year survival rate for transplant recipients based on age. The survival recipients of donor livers over the age of 65. rate for patients in age groups 18-34, 50-64, As was the case in heart transplantation, and over 65 are essentially the same at one studies have shown that many of the livers from month, one year and five years. When you look older donors were used in the most critically ill at the five-year survival rate based on the age of recipients. This would certainly explain, at least the donor heart received, it is not as good for in part, the lower survival rates for recipients of patients who receive older donor hearts as it is older donor livers. My own experience is that for patients who receive hearts from donors aged livers from older donors function as well. 18 to 34. However, there are so few heart donors over the age of 65 that it is difficult to ■ Summary draw firm conclusions. The general trend For heart, liver and kidney recipients, results appears to be that the five-year survival rate for of transplants using older donors appear to be patients reviewing hearts from donors over age slightly inferior to those obtained using younger 50 is not as good as for those who receive hearts donor organs. However, a significant number of from donors under age 50. these older donor organs are transplanted into ■ the sickest transplant recipients and that this Liver Transplant Recipients may, at least in part, explain the somewhat In 1995, 36% of liver transplants were worse results obtained using older donor organs. performed in patients between the ages of 50 In contrast, perhaps because our older and 64. In 1995, 245 liver transplant recipients recipients undergo an extensive workup to were over 65. In 1998, 3,771 patients awaiting ensure that they can be successfully liver transplants were between the ages of 50 transplanted, the survival rate for older and 64 and 667 were over 65. transplant recipients is equal to those obtained The survival rates for liver transplant in younger patients in the first several years recipients aged 18 to 34, 50 to 64, and over 65 following transplant. At five years, there appears are nearly identical at three months and one to be a trend for a decline in survival among our year. There is a slight decline in the five-year older recipients. Most likely, this is due to deaths survival rate for older recipients: For recipients that may be the result of complications related to T aged 18 to 34, the rate is 72% compared to 63% the aging process. C for recipients aged 50 to 64 and 57.2% for

MARK YOUR CALENDARS AND JOIN THE transAction! COUNCIL AT ITS 2nd ANNUAL MEETING “TAKING CONTROL OF YOUR LIFE” A program for all organ transplant recipients, their families and friends, in conjunction with the National Kidney Foundation’s National Donor Family Council and Patient and Family Council. OCTOBER 23, 1998 - OCTOBER 25, 1998 Philadelphia, Pennsylvania Sponsored by the National Kidney Foundation. For further information, call Marla Behler, CSW at 800-622-9010. How About Going To Camp This Summer? by Nancy S. Spinozzi, RD

Do you like to swim, play ball, do crafts? Have appointments or have your blood drawn at you ever been to camp? Now that you have a regular times? Are there physical, medical or good transplant under your belt, so to speak, dietary considerations to keep in mind? If your isn’t it fun to plan activities that you haven’t transplant is new, hiking in the Rocky had the energy or time to do in the past? Have Mountains or surfing in Hawaii might need to you thought about going to camp this summer? be postponed until next year—your doctor may want you to stay close to home—or rather, close There is a camp for just about everyone. to your medical facility. Whether it’s the local YMCA or Bible camp or a real “overnight” camp, you’ve really got to check Next, arrange to spend time with your social them out! Chances are you’ll find something worker who can help steer you in the right just right for you! direction. They have information on available camp programs, and are able to help you It takes a little planning, though. Even if you think through what type of camp might be have had experience with going to camp best for you. already, advance planning or, ‘doing your homework,’ is a must! Once you’ve got the medical considerations in hand, you can investigate what camps meet your Where Do I Begin? personal needs. Check out your local newspaper First of all, once you have the blessing of your (the Sunday paper usually carries ads of summer family to go to camp, you will need to talk to your camps), and ask friends where they go. And transplant doctor or nurse. They will tell you then, check in with your family to see what what restrictions, if any, you will need to they think. Your summer camp experience is consider when selecting the camp and its beginning to unfold! T program. Will you need to keep clinic C

HOT TOPIC Response (Issue 5:4) A Checklist for Planning the Camp Experience In response to the Hot Topic question from our ✔ last issue “Should transplant recipients be eligible Check in with your transplant doctor or nurse, and then to be re-transplanted, and if so, should they your social worker. receive higher or lower priority than those who ✔ Find out what physical preparation you can do to get have never received a transplant?” The majority of ready for the swimming, hiking or just plain walking you our readers agreed that these individuals should will do at camp. be given the same priority as everyone else unless the rejection was due to non-compliance and/or ✔ Have your transplant nurse or social worker contact the abuse. Here are a few examples of what some of camp beforehand, letting them know that you might have you said: some medical considerations the camp should be aware of. “These people should be listed as anyone else and eligibility should be based on illness. I think ✔ Make sure you get medical alert identification jewelry to the current system is equitable and should not be wear in case of emergency. changed.” ✔ If you are traveling a distance to camp, remember to “It should depend on why the organ was lost. pack your medications and any other important medical People who abuse their transplant as well as equipment and keep them close to you and not in a bag people who have not been compliant with their that will be out of sight for any period of time. medication should be on the bottom of the list and others should be listed as everyone else.” ✔ Once you arrive at camp, check in with the camp doctor or nurse. Introduce yourself so they know who you are in “Everyone should have a chance but the biggest case of an emergency. criteria should be how sick you are.” ✔ This issue’s Hot Topic: Don’t overdo physical activity, especially at the beginning. As a recipient, do you think age should be a factor? Is someone too old to receive an organ, or HAVE FUN!! (I’ve saved the best for last!) should the older patient be considered lower priority?

8 Transplant Chronicles, Vol. 6, No. 1 Transplant News Digest

From the editors of Transplant News Secretary Shalala Says Organ Allocation Policies Will be Revised to Transplant Sickest Patients First by Jim Warren, editor and publisher

Health and Human Services (HHS) Secretary have written to me to communicate a variety of Donna Shalala surprised members of the viewpoints on this topic, and I wish to respond transplant community February 26 when she as fully as possible. While I am constrained sent a letter to 89 members of Congress from discussing details of the regulation prior expressing her concern that current U.S. organ to publication, I think it is important to share allocation policies are not equitable and with you the principles which are guiding our indicating changes will be made. Shalala came development of these rules. In particular, I down squarely behind revising the current want members of Congress to understand that I policy of offering an organ first to waiting local am committed to vigorous efforts to increase patients in order of medical need to one which organ donation; to all patients having equitable assures that the sickest patient on the waiting access to organs to the extent medically list will receive the organ regardless of feasible; and to the leadership of the OPTN in geographical location. establishing medical criteria for organ allocation. “We can assure Americans that organ allocation policies are equitable, and that those “As you know, organ transplantation provides who need organ transplants will be treated life-saving and life-enhancing benefits to according to medical need, no matter where in thousands of Americans every year. American the country they may be hospitalized,” Shalala medicine has been a world leader in delivering wrote. Her six-page letter was sent to 89 these benefits, and during the past two members of Congress who had signed letters to decades, patient and graft survival rates have her in the past month concerning the much- improved markedly. In 1996, some 20,000 anticipated regulations governing the Organ transplants were performed—about 55 each Procurement and Transplantation Network day. This record is a tribute to transplant (OPTN). surgeons and other medical personnel, as well as our organ procurement organizations and Shalala emphasized that while the OPTN indeed all those who work or volunteer in the would continue to be operated by “professionals field of organ transplantation. in the transplant community,” HHS has the responsibility to ensure organs are “made “At the same time, however, we have not fully available equitably, subject to sound medical realized the goals of the National Organ advice.” Transplant Act of 1984 (NOTA), nor of the report of the Task Force on Organ The letter provides the clearest indication to Transplantation which was developed in date of what provisions the transplant response to the Act. NOTA was passed to community may expect in the OPTN regulation create a national system in which an adequate when it is published. supply of organs would be available on an equitable basis to patients throughout the Here are excerpts from Shalala's letter: nation. On both counts— the adequacy of organ supply as well as equity in distribution— “Thank you for your recent letter concerning I believe we are falling short of the law's the Department of Health and Human Services’ expectations. (HHS) consideration of final regulations for the Organ Procurement and Transplantation “We have not yet achieved many of the Network (OPTN). Many members of Congress important benefits of a national organ-sharing

Transplant Chronicles, Vol. 6, No. 1 9 network that were envisioned by NOTA. In law and applying those expectations to the work particular, we have not achieved equitable of the contractor. This is the role HHS should distribution to those with greatest medical need. play. HHS should not seek in the first instance The most visible short-coming is the wide span in to define specific policies, including organ average waiting times for those on transplan- allocation policies, of the OPTN. But HHS tation waiting lists. In some areas of our Nation, should indeed establish broad performance patients wait 5 times longer or more for an organ standards and make clear the desired outcomes than in other areas. Less visible but more which will best serve the Nation. In preparing the important are the resulting inequities in who regulation, we are developing performance and receives organs. Where waiting times are outcome standards which would be applied to shortest, organs may go to patients who are less the policies developed by the OPTN. This is the ill; while at the same moment, in areas where same approach the Department adopted in patients wait longer, organs often are not offered implementing the organ procurement organiza- to patients with greater medical need. In the tion provisions. This approach has had worst case, patients die in areas where waiting widespread support. times are long, while at the same time organs are being made available to less ill patients in areas “The goal of the performance standards would with shorter waiting times. be to make it possible for patients with the greatest medical need for transplantation to be “It seems clear to me that in passing NOTA, more accurately identified by the national Congress did not intend for patients in some network and to be put at the head of the list for areas of the Nation to be disadvantaged in this a suitable organ. In particular, this means the way. NOTA envisioned a national network which development of standard patient listing criteria would help bring about the most medically and medical urgency categories that would effective use of organs and the most equitable enable our transplant network to reliably assess treatment of patients possible within the bounds the medical condition and need of all patients of available technology. Unfortunately, even as awaiting transplantation. Our approach would technology has improved, making it possible to help assure that those who receive organs are preserve organs longer and hence offer them over those with greatest medical need and that organ a wider geographic area, the allocation scheme of allocation policies would result in more equal the OPTN has continued to give preference to waiting times (adjusted for severity of illness) local use of organs even if such organs could be across the country. used to save the lives of sicker patients located nearby. “It is not the desire or intention of the Department to interfere in the practice of “For example, in 1996 over 50 percent of livers medicine. Decisions about who should receive a were used in the local area where they were particular organ in a particular situation involve procured, instead of being used outside the local a subtlety and an urgency which must be dealt area. Over 50 percent of these livers went to with by transplant professionals. The proper patients who were not sick enough to be HHS role is, instead, to assure that the policy hospitalized, while during the same year almost framework within which those decisions are 400 of the 953 patients who died awaiting made is one that serves the ends that the law transplant were hospitalized at the times of their intended. Thus, for example, it may be necessary deaths. Thus, even though technology has for the OPTN to construct more uniform medical increased our capability to share organs over a criteria for the appropriate listing of patients at wider geographic area and thereby give more transplant centers, as well as more uniform preference to patients with the greatest medical criteria for the definition of patient status. need, the OPTN allocation scheme has so far failed to take full advantage of that opportunity. “Uniform criteria among centers would help assure equitable treatment for all patients, a “While NOTA provided the broad structure and clear goal of NOTA that HHS should help goals for a national organ transplant network, achieve. But the Department would look to the and while day-to-day operational responsibility OPTN to develop those criteria. Likewise, it may was assigned to a private contractor under HHS, be necessary for the OPTN to develop allocation there has been too little attention given to policies that would make waiting times more defining the expectations that are inherent in the equal in the various regions of the nation. Again,

10 Transplant Chronicles, Vol. 6, No. 1 this clearly serves the goals of NOTA. But our appoint a high level public review committee to regulation would look once more to OPTN to scrutinize each proposed clinical trial, set up a develop the specific, medically-sound policies for registry of all human xenotransplant trials, and achieving this goal. The OPTN is fully capable of establish a central bank of tissue from both developing policies which would advance these donor animals and human recipients “so if we goals. HHS does not seek to develop the policies had a disease outbreak,” he said, “there would and would not do so unless the OPTN failed to be a facile means for the Centers for Disease develop satisfactory policies of its own. Control to investigate.” “I don't think there is any reason for a “Further, in order to inform patient choice and moratorium—there are adequate safeguards in monitor the quality of care at transplant centers, place and the FDA does have tracking vehicle in information about transplants and the perform- place,” Marvin Miller, president and CEO of ance of individual transplant centers needs to be Nextran, told Transplant News. Nextran, an available to patients and physicians in a form affiliate of the Baxter Healthcare Corporation, is that is current and comprehensible. Recently, heavily involved in research on the use of HHS and the OPTN contractor have experienced transgenic pigs in xenotransplantation. disagreement over the release of transplant center data. HHS intends to make data “We have to have the tools in place for disclosure requirements clearer.” adequate monitoring and screening but if we proceed slowly I believe the safeguards are in Leading xenotransplant researchers call for place,” Miller added. “Some people think moratorium on human clinical trials causes companies like ours are only in it for the money. furor Companies like ours have a motive for personal gain and public health benefit. If there is the One of the world’s leading researchers in slightest hint we are uncomfortable with the way xenotransplantation stunned and angered much things are going, we will be the first to say it and of the transplant community in January by not pursue. We are not about to do anything calling for a temporary moratorium on all recklessly.” human clinical trials. Fritz Bach, MD, a pioneer In the commentary, the authors note that four in xenotransplantation research, and eight ethical considerations guide their thinking. They colleagues, argue that a national advisory include: committee must be formed to openly discuss the potential risks and benefits of clinical • A risk to the public requires a public xenotransplantation before any clinical trials are mechanism for determining the acceptability performed in the U.S. or the world. of, and method of consent to, the risk. • Since the risk to the public is not a ‘one time Defending the controversial call for the only’ event, its assessment and regulation moratorium, Bach told the New York Times: must be iterative. • The standard model of individual informed “Xenotransplantation is a unique medical consent to medical interventions must be enterprise. It puts the public at risk for the modified, since risks involve third parties, benefit of the individual. If you put the public at requiring that patients and close contacts be risk, then it has to be the public that says, ‘I do carefully monitored. not accept that risk,’ or ‘I accept it.’” • The possibility that a new infectious agent with altered pathogenicity will arise within the Bach and his colleagues, which include Dr. xenograft recipient may represent a danger to Harvey Fineberg, former dean of the Harvard the pig population. School of Public Health, took a lot of heat from colleagues for a moratorium call at this time. “Because of these four considerations, “The strong sense is that this work ought to xenotransplantation requires a novel process of go forward and that a moratorium would be a evaluation at the national level with novel harmful step,” William Raub, deputy assistant institutional guidelines, responsibilities and secretary of the Department of Health and resources,” the authors conclude. Human Services (HHS), told the Boston Globe. The authors point out that the moratorium However, Raub did say the government will would be for only human clinical trials and urge

Transplant Chronicles, Vol. 6, No. 1 11 that fundamental research on xenotransplan- performed in the United States. At the end of tation continue. Bach believes a moratorium 1996, more than 34,00 patients undergoing would be short—four to six months if the dialysis were on the national kidney transplant national advisory committee would meet every waiting list, with 8,600 cadaveric transplants two weeks. performed. By the year 2000, the list is expected to grow to 42,000 patients. A program for “I think the committee should exist much procuring kidneys from donors without heart- longer than that, but the moratorium could be beats reportedly produced a 40% increase in lifted. I think we should move as quickly as the overall supply of cadaveric organs. The possible so potential lifesaving therapy would researchers stated that if a similar program were not be withheld,” Bach said. “I’m as keen as initiated on a national level, and the results held anyone in the world to see this thing go.” true and were maintained, it might be possible to finally begin reducing the number of patients on Use of non-heartbeating donors could the waiting list for cadaveric kidney transplants increase kidneys transplanted without each year. compromising outcome TransWeb launches Web site aimed at Transplantation of kidneys from donors educating middle, high school students whose hearts have stopped beating could significantly increase the overall supply of about transplantation cadaveric kidneys without compromising long- term graft survival, according to a study A new multimedia World Wide Web site aimed published in the January 22 issue of The New at educating middle and high school students England Journal of Medicine. about the transplant process has been created by TransWeb, a non-profit educational Web site The results from 229 renal transplantations housed at the University of Michigan Medical performed at 64 U.S. medical centers showed Center. The Transplant Journey can be found at: that the one-year survival of kidney grafts from http://www.transweb.org/journey donors without heartbeats was 83% compared with 86% for grafts from heart-beating donors. The Web site explores what organs do, what And when kidneys from non-heartbeating happens when they don't work, transplant donors who died from trauma were used, graft eligibility and testing, organ donation, surgery, survival in the two groups was equivalent. and what patients face after transplantation. The Transplant Journey contains a full glossary, The researchers attribute the differences in illustrations, animations, and audio combined to survival to failure of the non-heartbeating donor convey the transplant experience as a whole, kidneys within the first month after transplan- while accommodating a variety of learning styles. tation. Nearly half of the recipients of these Users may choose their own path and can grafts required dialysis during the week after explore the transplant process independently or transplantation, with 4% of the kidneys never in a classroom setting. functioning. Dr. Yong W. Cho and his co- investigators believe this problem could be Development of The Transplant Journey was appreciably reduced, if not eliminated, through funded through a grant from the U.S. Depart- the use of kidney-viability testing. Several such ment of Health and Human Services Division of tests have been developed, but none has yet Transplantation (DOT) as part of the recent been validated for the purpose of documenting organ donation initiative announced by HHS in the viability of human kidneys. December 1997. Most of the early kidney transplants done For further information, contact: Eleanor during the 1960s used kidneys from donors Jones, TransWeb - Phone: (734) 998-7314, whose hearts had stopped beating. Since that e-mail: [email protected]. The World Wide Web T time, heart-beating donor grafts have been used site for TransWeb is: www.transweb.org C in the vast majority of these operations

12 Transplant Chronicles, Vol. 6, No. 1 medical beat Living Related Liver Transplantation by Debra Sudan, MD

E ach year more patients are added to the complications. Furthermore, the donor and waiting list than are transplanted, leading to an recipient should be of the same or compatible ever-growing waiting list and an increase in the blood types and the donor liver should have number of patients who will die each year while normal vascular anatomy (veins and arteries) awaiting transplantation. Living related kidney and be an appropriate size for the recipient. transplantation has long been used to decrease Generally the portion of the liver donated is used the shortage of cadaveric kidneys available for to replace the entire diseased liver. The transplantation. Living related liver Japanese, who did not until recently recognize transplantation was not adopted as quickly brain death criteria as valid, had only the option because the liver is a single organ and not a of living related transplantation for patients with paired, or double, organ like the kidney. end stage liver disease. They have recently tried Removing a portion of the liver requires a great a technique that has some promise for patients deal of care and skill in order to leave the for whom the donor liver might otherwise be too remainder in a working state. In 1989, after small. They have removed only a portion of the having no deaths from a series of 100 diseased liver and placed the donor liver next to consecutive liver surgeries, Dr. Cristoph E. it. The donor liver has the ability to grow to a Broelsch performed the first living related liver size that can fully support the recipient. Once transplant. He removed a portion of a parent’s this has occurred, the remaining diseased liver liver and transplanted it into a small child. The can be removed. use of the living donor’s left lateral Consideration for living related liver segment for transplantation in liver transplantation should begin a child provides a large enough at the time of initial evaluation for liver mass without placing the liver transplantation. It is best for living donor at excessive risk. the family to make the decision to The donor’s liver will rebuild to donate or not, without pressure its normal size within 6-8 weeks. that might be felt if the patient with Since 1989 it is estimated that liver disease deteriorates. approxim-ately 1,000 living related Psychological evaluation should be liver transplants have been included in the work-up of a performed worldwide. Most of these potential living donor to be sure organs have been placed into that the potential donor is not children, but several centers have overwhelmed with concern for the attempted living related liver transplants in recipient and unable to think clearly about the adults as well. The primary problem in doing risks involved to the donor. More programs are adult living related liver transplantation is supporting the desire of family members to help identifying a large enough donor to provide each other in their time of need. Many family adequate liver mass for the recipient without members are more than happy to go through placing the donor at excessive risk. The function surgery if they are able to give the gift of life to a of live donor organs is the same as cadaveric loved one. In skilled hands, the risks from living organs, and some report even better liver donation of organs is minimized. Until there are function with less bile duct complications. This alternative therapies for the patient with end may be due in part to the short cold ischemic stage liver disease, living related liver times (time when the donor organ is out of the transplantation will continue to be an important body and stored on ice). option. The living liver donor must be in top physical Dr. Debra Sudan is an Assistant Professor of health in order to minimize the risks of Surgery in the Section of Transplantation at the T University of Nebraska Medical Center. C

Transplant Chronicles, Vol. 6, No. 1 13

1996 U.S. Transplant Games Fitness Testing by Patricia Painter, Ph.D. Acknowledgements: The author would like to heart disease. Although body weight was similar express sincere thanks for the efforts of all the in the two groups (average 72 kg in the active staff of the UCSF Transplant Rehab Program, the group vs 76 kg in the inactive group), the body University of Utah Dept. of Exercise Science composition was different, in that the percent of students and faculty AND the unbelievable the body weight which was fat was significantly enthusiasm, support and efforts put forth by the lower in the active subjects compared to the transplant recipients whom we tested. inactive subjects (24 percent vs 29 percent). Higher body fat increases cardiovascular risk and There was a special event at the 1996 U.S. may contribute to high blood fat levels. Transplant Games that was happening in the exercise physiology laboratory at the University The quality of life questionnaire gave us of Utah. Transplant Games participants were information on 8 ‘dimensions’ of quality of life. hooked up (looking like bionic beings) and were The scales are defined in the table below. being pushed to their max on the treadmill, on a Scale name Definition leg strength machine and were being dunked in Physical Functioning The extent to which health limits physical a water tank. All this was sponsored by the activities such as self care, walking, climbing stairs, bending, lifting and moderate and National Kidney Foundation to document the vigorous activities physical fitness levels of Transplant Games Role Function Limitations/Physical Extent to which physical health interferes with usual daily activities such as work, housework, participants. The testing was organized by the schoolwork

University of California at San Francisco Body Pain Extent to which pain is experienced and limits Transplant Rehab Intervention Project. With the normal work inside and outside the home fantastic cooperation of Dr. Maurie Luetkemeier General Health Ratings of overall personal health and his colleagues and students at the Vitality Amount of time was tired, energetic, had University of Utah Exercise Science Department, enough energy to do things 120 people went through the testing. After the Social Functioning Limitations in normal social activities due to physical or emotional health testing, participants were counseled on the Role Function Limitations/Emotional Extent to which emotional health interferes results of the testing, their training and were with usual daily activities such as work, housework, schoolwork given plans to follow to improve. Mental Health Feelings of depression, anxiety, positive affect The interest was incredible. Notification of the opportunity to be tested was sent out in the The following graph shows the results of the registration packets for the Games. We received quality-of-life questionnaires obtained in this 428 replies stating their interest in being tested. study: The blank bars are the scores for the We scheduled the first 120 responses that came ACTIVE transplant recipients. The striped bars in. Additional people were tested in San are the scores for the INACTIVE transplant Francisco—for a total of 128 (76 kidney, 16 liver, recipients and the solid black squares are the 19 heart, 6 lung, 7 pancreas/kidney and 4 bone values for the general population for that marrow), the largest sample of transplant particular scale. recipients tested for fitness—EVER!

We found that transplant recipients are able to attain high fitness levels and pretty close to ND ND normal quality-of-life ratings. Of those tested, 76 percent reported regular exercise [at least 3 times per week for 30 minutes or more of cardiovascular (or aerobic) exercise]. These active subjects achieved 101 percent of age-predicted values of cardiorespiratory fitness, compared to the inactive subjects who achieved only 72 percent of age-predicted values. Cardio- respiratory fitness, or exercise capacity, is what allows us to have the endurance to do the things Continued on page 17 we need to, and may be a factor in preventing

Transplant Chronicles, Vol. 6, No. 1 15 What About Those New Anti-Rejection Medications I’ve Been Reading About? by Ira D. Davis, MD and R. Patrick Wood, MD O ver the past 10 years, we have witnessed an significantly lower incidence of acute rejection explosion in our understanding of the factors during the initial six than do those taking that control whether or not a transplanted organ azathioprine. However, patient and kidney is rejected by our immune system. Along with survival do not appear to be significantly different this gain in knowledge is the development of three years after transplantation. newer drugs that may prolong the life of the transplanted organ by reducing the incidence of Side effects of this medication include nausea, rejection without causing an increase in side diarrhea and low white blood cell counts. No effects. Two new drugs, mycophenolate mofetil significant increase in the incidence of serious (CellCept) and sirolimus (Rapamycin), look viral infections or cancer has been identified. promising. There have also been advances in the Sirolimus is a new anti-rejection drug that is development of newer monoclonal antibodies, a being studied in various clinical trials for kidney type of anti-rejection drug commonly used in the and liver transplant recipients. This drug also immediate post-transplant period or in the blocks the growth of white blood cells involved in treatment of severe rejection. causing rejection. Preliminary studies in kidney The safety and efficacy (effectiveness) of new transplant recipients demonstrate that taking anti-rejection medications must be studied in a sirolimus along with cyclosporine reduces the series of clinical trials before being approved by incidence of rejection. The primary advantage of the Federal Drug Administration (FDA) for use by this drug may be the reduction of side effects organ transplant recipients. In order to be such as kidney injury, blood pressure elevation approved by the FDA, a drug must have and irritation of nerves that are commonly seen acceptable rates of patient and transplant organ with cyclosporine and tacrolimus. survival without significant side effects. These Recent advances in the development of side effects may include nausea, vomiting, monoclonal antibodies hold promise for exciting diarrhea, reduction of blood cell counts, high new changes in the overall strategy for preventing blood sugar levels, or toxicities to other organs rejection and prolonging the life of a transplanted such as the kidney or liver. The risk of organ. The monoclonal antibodies daclizumab developing serious viral infections such as (Zenapax), which was recently approved by the Cytomegalovirus and Epstein-Barr virus or FDA, and simulect bind to a specific chemical on cancer must also be assessed. lymphocytes and have been associated with a Mycophenolate mofetil, recently approved by reduced incidence of acute rejection in kidney the FDA, is similar to azathioprine (Imuran) in transplant recipients. A newer version of OKT3, that it blocks the growth of white blood cells referred to as humanized OKT3, is also available known as lymphocytes, which can cause organ for the treatment of severe rejection in kidney rejection. In many transplant centers, patients transplant patients. receiving a new transplant are started on The major advantages of the newer generation mycophenolate mofetil in conjunction with monoclonal antibodies appear to be: 1) a better prednisone and either cyclosporine or tacrolimus. safety profile with respect to the risks of Although patients already taking azathioprine are developing immediate allergic reactions, serious not typically changed to mycophenolate mofetil, viral infections or cancer; and 2) a longer some transplant centers have switched kidney duration of action between dosing, referred to as transplant recipients to this drug after they have half-life. Another benefit may be a reduction in developed a serious rejection episode that is the cost of some anti-rejection therapy since they resistant to other therapies. are typically administered every two weeks. Carefully designed multicenter studies These drugs may also be easier for patients than demonstrate that cadaveric kidney transplant certain anti-rejection drugs that are taken once recipients taking mycophenolate mofetil have a or twice a day. Other monoclonal antibodies hold continued on page 17

16 Transplant Chronicles, Vol. 6, No. 1 It Would Take Me A Lifetime… by Nancy Rhinehart It Would Take Me a Lifetime… to let you know how much I appreciate you. It would take me a lifetime to list all the reasons why you are so important to me. It would take forever to find words for all the thanks I would love to express… for all the deeply reassuring feelings that I feel in your willingness to sacrifice David Taylor and Nancy Rhinehart a part of you for me. And it would take an eternity to give you back more gently than any feeling, even half of the love you’ve given me during I will keep you on my mind—more lovingly than this troublesome time we have shared together. any thought, and But until forever is here, until a lifetime is lived, I will feel blessed by your presence—more than and until eternity gives me a chance you’ll ever know. to say everything my smiles try to show… This is dedicated to David Taylor by his sister T I will hold you in my heart— Nancy. C

The development and testing of newer anti- Anti-Rejection Medication rejection drugs continues at a dramatic rate. Continued from page 16 Several exciting new strategies, in various stages of clinical trial investigation, hold promise in promise in reducing the injury to a transplanted improving the safety of organ transplantation and organ that commonly occurs after the harvested potentially prolonging the long-term function of organ is connected to the recipient's body. T transplanted organs. C

Transplant Games suggests that the physical Fitness Testing potential of transplant recipients may be higher continued from page 15 than many may have expected previously. The U.S. Surgeon General's office published a This clearly indicates that most participants in report on Physical Activity and Health (July, this study had scores on the quality-of-life 1997). This reports states that the American questionnaire that were similar to those of the population needs to increase their levels of general population. It also indicates that active physical activity. Those groups that may benefit recipients scores are mostly higher than those of most from regular exercise include individuals the general population and significantly higher with: heart disease, hypertension, osteoarthritis, than inactive recipients. The only two diabetes and disabilities. Although the report scales in which there was no difference (NF) does not specifically mention transplant between active and inactive were the role recipients, the importance of exercise following limitations due to emotional factors and mental transplant should not be overlooked. Since health scale. people who undergo transplant are typically very It is not expected that all transplant recipients weak and deconditioned, every effort should be will achieve normal functioning and quality of made following transplant to get them to become life. Much will depend on other medical problems physically active on a regular basis to regain they may have, as well as other factors, in their their strength and functioning and to optimize lives. However, the information obtained from the their overall health and make the best of their T fabulous efforts put forth at the 1996 U.S. new chance at life! C

Transplant Chronicles, Vol. 6, No. 1 17 A Trip to the Buckeye State Site of the 1998 U.S. Transplant Games by Cheryl Jacobs, LICSW

We're hoping to see you this summer at the We want to make your travels to the Games as National Kidney Foundation’s U.S. Transplant carefree as possible by providing you with our Games at the Ohio State University (OSU) in Travel Tip Check List to help prepare you for the Columbus from August 5 to 8. This summer will Games: mark the fifth time the NKF will sponsor the ◗ anniversary of the Transplant Games. Anyone Get one last check-up from your doctor. who is a recipient of an organ transplant can Naturally, you're in shape and ready to participate in the many events available. In 1996, participate and compete from all the training athletes ranged in age from 1 1/2 to 74. There or exercise you've done, but get the final will be all levels of participation and competition; “OK” from your physician before you land in whether you're a runner, walker, badminton Ohio. (No fibbing allowed.) Even though player or golfer, to name a few, there is an event there is access to excellent transplant for you. Everyone leaves a winner, making new professionals and ERs in Columbus, try to friendships and experiencing camaraderie with avoid them if you can. It's best to get any fellow recipients and families. final routine check-up, tests, or specialist's consultations before you leave The U.S. Transplant Games home. provide an opportunity to celebrate ◗ and share in the challenges, joys Bring any relevant medical and successes of individuals from records, including your list of around the country who have been medications, allergies and the affected by a transplant in some names and phone numbers of your way or another. In addition to health team. You might also athletic activities, there will be investigate medical alert educational sessions; meetings of identification jewelry . . . a good the transAction Council national idea to wear when traveling. group that is the voice of all ◗ transplant recipients; donor family Pack your medications with you, workshops; the National Donor Recognition not in luggage that will need to be Ceremony, sponsored by the Division of checked. Plane delays or lost luggage may Transplantation; and many other activities for mean spending hours to track down a recipients, family members, donors, donor families physician to refill your medications, not to and friends. The Transplant Games not only mention the cost. Fill all your prescriptions provide an unforgettable experience to all those ahead of time, unless you are planning an present, but also generate awareness of how extension and have an address where your successful and necessary transplantation has mail-order pharmacy can reliably reach you. become. And make sure you don’t forget to bring the appropriate supply for the duration of the Contact your National Kidney Foundation event. affiliate to find out more information about local activities, or call the National Office (1-800-622- In addition to medicines, bring an allergy kit, 9010 for team contact information in your area). glucagon, diabetic supplies or treats if you need You can find up-to-the-minute Games information them. Traveling frequently causes dehydration, at the NKF Web site www.kidney.org. Your local so pack a bottle of water if you can. team manager can help with logistics and support you might need to participate. They will have ◗ If your team has not made travel details on events, travel, lodging and other suggestions or arrangements for you, let a information on how the team plans to participate. travel agent know your plans so he or she➔ 18 Transplant Chronicles, Vol. 6, No. 1 can confirm the best airfares. Those with sites in Ohio. The Visitor’s Center in Internet access may also fare shop. Perhaps Columbus has many exciting recommenda- you could inquire about lower group rates or tions for your travel or entertainment plans donated frequent flyer miles by corporations. and can be reached at1-800-345-4FUN. (This should be addressed by your team.) Inform the airlines of any special dietary ◗ Last, but certainly not least, bring your requirements (like low sodium or diabetic camera, video camera and address book to meals). They can also provide you with take memories and pictures of friends home appropriate airport transportation, with you until the next Transplant Games. assistance or seating arrangements. The Port Columbus International Airport is a 10- Ask about the famous Santa Maria, German minute ride to downtown Columbus. Village, Science Museum or the Columbus Zoo. Those who are members can obtain free, helpful You may want to inquire about travel insurance information from AAA. They will even route your if you feel it's appropriate. map for your drive there. ◗ Who knows what El Niño will do to the weather in August in Ohio, but chances are Most events will take place on campus near the it will be quite warm that time of year. dorms which you will find reasonably priced and Sunscreen should already be in your accessible to the festivities. The Transplant repertoire. Make sure to break in any new Games Committee has also secured hotels nearby tennis shoes before you leave home. (Blisters the campus and will provide frequent shuttle T are a challenge to healing and competition.) services from all Games locations. C

◗ Your team may have already given you access to additional excursions or popular

Just remember to enjoy every day to the fullest, Keeping Fit and give thanks to your donor, donor family and Continued from page 5 especially your own family for helping you with your second chance at life. Be healthy and happy! 7. Speeds the recovery process Note from the fitness editor: Although the side 8. Strengthens heart and lungs effects of the medication can be overwhelming, with 9. Strengthens musculoskeletal system a regular, consistent exercise program you will have 10. Improves cognitive ability the ability to combat many of them. You need to 11. Improves sexual performance incorporate physical activity into your lifestyle in 12. Improves total well-being order to boost your immune system and 13. Prevents injury and disease metabolism, and increase your strength, muscle Setting your goals after your transplant should tone and endurance. Even though medications can be a slow upward path. Consider high jumpers. cause undesirable effects, exercise is not only vital They don’t set the bar at eight feet for the first to your health, but physical fitness will give you the jump. They jump at a comfortable height, then power and control you need to fight back! You need gradually progress and set the bar higher and to take control of your life and get on a program higher, inch by inch. Start slowly, set realistic that is right to you. This is not simply about goals and be confident that you have given it your exercise, but about living in health and happiness. best. Follow your goals like this… No matter what, Vanessa Underwood, RS, AFAAACE, is a two-time kidney keep setting the bar that inch higher each day, go transplant recipient. for that extra little bit. One day, you will look back and be amazed at the heights you have achieved. Drew Silverman is a PharmD caring for kidney, liver and heart transplant patients at Tampa General Hospital in T I celebrated the 13th anniversary of my kidney Florida. C transplant on April 2, 1998. I have made a lot of my own compromises during those 13 years, and many sacrifices, too. I have set the bar pretty high and continue to raise it after everything I achieve.

Transplant Chronicles, Vol. 6, No. 1 19 Hi, my name is Jordan, I have been waiting for a kidne transplant for 7 years. I got very sic when i d s I was a baby. So, I had to go on K dialisis. That wasen’t fun at all! But, I did get a kidney on Friday o July 14, 1995. They called at 1:30 in the night and said come in. But r then they called and said don’t come n untill 7:00. e When we got to the hospital they r put us in this really wierd room. We waited a couple hours then I got a horrible I.V. in. That wasn’t fun at all. Then my daddy came. They took me into the operating room and I fell fast asleep. I came out of the Operating August-September Room after 7 hours of Highland Hts. sergery. Then when I I wrote this book of my kidney because it was the got home a few weeks best time of my life!! later I went swimming for the first time in three years!

The National Kidney Foundation recognizes the significant contributions made by Novartis Pharmaceuticals Corporation to transplant recipients around the country through its sponsorship of the following NKF programs: The 1998 U.S. Transplant Games; Team USA to the World Transplant Games; Transplant Chronicles; and transAction Council programs.

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