In the Game L Ast Spring, When Sean to Let His Battle with Kidney Elliott Made One of the Most Disease Diminish His Drive As a Dynamic Plays in San Antonio Player

Transplant Chronicles

Volume 7, Number 4 A publication for transplant recipients of all organs and their families, Spring 2000 published by the National Kidney Foundation, Inc. In the Game L ast spring, when Sean to let his battle with kidney Elliott made one of the most disease diminish his drive as a dynamic plays in San Antonio player. Spurs history, neither fans nor rivals realized what a truly “I just felt I had a responsibility remarkable athlete they were to the team,” said Elliott in a watching. He had only recently recent story with the Austin- returned to play from a sidelin- American Statesman. “It’s been ing knee injury. Elliott was also something I’ve been living with fighting a degenerative kidney for a while, so I really didn’t let it disease that was robbing him creep into my mind that much.” of his strength and threatening Photo credit NBA Photos According to Spurs coach Gregg his life. Sean Elliott—before Popovich, Elliott deserves a lot of surgery—playing to win. respect for the obstacles he has Elliott, 31, began his NBA His career and his scoring overcome. “Hopefully, people will career upon graduation from the average have risen steadily. As a have an even greater respect for University of Arizona in 1989, starter on the 1999 NBA what this young man has done, when he was selected by the Championship team, Elliott given the circumstances under Spurs as the third overall pick of made a key play in the final which he had to do it.” the NBA draft. A native of seconds of game two of the 1999 Tucson, he finished his college Western Conference Semi-finals Family has always been an career as the all-time leading against the Portland, important part of Elliott’s life. scorer in Pacific Athletic Trailblazers. It was Elliott’s Growing up, Sean and his Conference history. During the three-point shot that gave the brother Noel, now 32, 1992-1993 season, he was one Spurs the win. Most of his encountered typical sibling of the best all-around players in teammates did not know Elliott rivalry but have always his league and was on the was quite ill when he pulled depended on one another. Sean Western Conference All-Star them to victory. He had been acted as Noel’s high school Team. After being traded to the diagnosed in 1994 with focal basketball tutor when the older Detroit Pistons in 1993, he segmental glomerulorsclerosis, Elliott had trouble concentrating. returned to San Antonio in a disease that prevents the The pair’s lifetime of camaraderie 1994. kidneys from properly filtering waste from the blood. He refused Continued on page 3

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

H appy New Year to you all. Transplant Chronicles is published by the National Kidney Foundation, Inc. Hope you survived the busy holiday Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc. months and are now deep into your Editor-in-Chief: New Year’s resolutions. If you are Beverly Kirkpatrick, MSW, LSW like most, one of the resolutions St. Christopher’s Hospital for Children Philadelphia, Pennsylvania probably revolved around diet and Editors: exercise. And if you are like me, Ira D. Davis, MD Vanessa Underwood, BS, you are finding yourself slipping at Rainbow Babies Children’s AFAA, ACE Beverly Kirkpatrick Hospital Fitness Trainer/Wellness this point. Some articles in this Cleveland, Ohio Consultant issue may get you back on track. Maurie Ferriter, BS Plaistow, New Hampshire NKF of Michigan Jim Warren, MS Lakeland, Michigan Transplant News Politically, a major breakthrough for transplant Janet Karlix, PhD San Francisco, California patients occurred since our last issue. See page 13 University of Florida Becky Weseman, RD, for details. A big THANKS goes out to everyone who Gainesville, Florida CNSD, LMNT Teresa Shafer, RN, MSN, CPTC University of Nebraska helped to get this bill supported! Life Gift Organ Donation Center Omaha, Nebraska Ft. Worth, Texas Laurel Williams Todd, RN, MSN This is the year of the Games. The U.S. Transplant Charlie Thomas, CISW, ACSW University of Nebraska MC Samaritan Transplant Services Organ Transplant Games that is! I hope many of you are all set to Phoenix, Arizona Omaha, Nebraska descend on sunny Florida. The NKF is working hard R. Patrick Wood, MD and is very excited about taking the Games to GALA Editorial Office: Houston, Texas Disney. It will be impossible not to have a great National Kidney Foundation, Inc. time!! I will be sharing the experience with 30 young 30 E. 33rd Street, New York, NY 10016 (800) 622-9010/(212) 889-2210 transplant recipients from the Philadelphia area. http://www.kidney.org Watching through a child's eyes is incredible!! Executive Editor: Editorial Director: Diane Goetz Gigi Politoski T See you there!! C Managing Editor: Production Manager: Sara Kosowsky Joanne Charles Beverly Kirkpatrick Design Director: Editorial Manager: for the Editorial Board Oumaya Abi-Saab Catherine Paykin ✏ Sign Me Up... FOR A FREE MEMBERSHIP IN THE TRANSACTION COUNCIL

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2 Transplant Chronicles, Vol. 7, No. 4 Sean Elliott … it, so be it. But I don’t really think that’s the end of it,” Elliott says. Because basketball is such a continued from page 1 rigorous sport, doctors want to make sure Elliott will be protected before letting him back on the was put to the test last summer when it was court. His new kidney was placed in the front discovered that Elliott’s disease had progressed to portion of the body, near the pelvis, and he may the point of near kidney failure. Family members need to wear a protective device to shield it from were screened as potential organ donors. Without a contact on the basketball court. kidney transplant, Elliott would have to undergo dialysis, a tremendous obstacle for a professional Elliott is excited about the progress he has made basketball player. When the results came in, Noel to date and hopes to motivate other transplant turned out to be an almost recipients to remain active. Besides the obvious perfect match. Noel Elliott physical challenges a comeback involves, Elliott has said that he felt both says that returning to basketball will be a true honored and glad to help mental challenge after undergoing such a his brother in his time of procedure. “I think it would be a great statement need. “My brother has for a lot of people if I could come back and play,” always been there for me said Elliott. His dream may be realized sooner than and I will always be here anyone imagined. Elliott was cleared by doctors to for him. The Lord is with return to the game and the following evening, just us.” five months post-transplant, he joined his team for a practice session. He is still awaiting approval by The transplant took place the Spurs coach and team physicians to get back Sean plans to return to in August. In the in the game. If anyone can forge into unchartered play this season. beginning of the 1999- territory, though, it’s Sean Elliott. 2000 season, Elliott started travelling with the At press time he had been cleared by his doctors Spurs as a color commentator. to resume his ball career and is practicing with the T “I’ve had a great career, and if that’s the end of team. C

Sean Elliott to Serve as Spokesperson for National Kidney Foundation 2000 U.S. Transplant Games San Antonio Spurs forward Sean Elliott, who 5,000 people, including transplant athletes, underwent kidney transplant surgery August 16, their families and friends and families of organ will serve as spokesperson for the National donors. Athlete participants range in age from Kidney Foundation 2000 U.S. Transplant three to 75. Games. This Olympic-style event, to be held Fred Herbert, chairman of the National Kidney June 21-24, 2000 in Lake Buena Vista, Florida Foundation, says, “We’re delighted at Disney's Wide World of Sports™ that Sean Elliott has chosen to Complex, is for athletes who have become our Transplant Games received life-saving organ transplants spokesperson. We know he will make of every type, including kidney, liver, a real difference in helping to get the heart, lung, pancreas and bone message out about the success of marrow. Transplant athletes will organ transplantation and inspire compete for gold, silver and bronze transplant recipients, donors and medals in 13 different sports, those people awaiting organs and including track and field, swimming, their families.” tennis, basketball, cycling and golf. Elliott will light the torch at Opening Ceremonies and Elliott will join another NBA legend at the participate in the basketball event and medals Games, Oscar Robertson, who donated a kidney presentations. to his daughter, Tia, a Transplant Games athlete. Says Robertson about the Games, Attendance at the 2000 U.S. Transplant Everyone who competes is already a winner in Games is expected to surpass the record- the game of life.” T breaking participation in the 1998 Games of C

Transplant Chronicles, Vol. 7, No. 4 3 Living Donors Receive Leave Benefits by Charlie Thomas, CISW, ACSW

The federal Government and the United “Do you have a living donor?” The answer to this Network for Organ Sharing (UNOS), the question can mean the difference between a contractor that operates the national organ relatively short wait for a scheduled transplant distribution system, have enacted leave policies or waiting several years for a cadaveric donation. for their employees that support living organ Research has shown that kidneys from living donation. There are many times that otherwise donors last longer and function better than well-matched living donors have been unable to kidneys from deceased donors. There are several donate due to the threat of lost income while reasons for this; primarily, a living donor will not recuperating from the donation procedure. It is have experienced physical trauma, and the cold true that living donors don’t assume the medical ischemia time (the time the organ is out of the costs of donating, because these costs are body) is at a minimum. The number of living covered by the recipient’s insurance. However, donor kidney transplants more than doubled donors have had to deplete their own personal from 1,824 in 1988 to 3,793 in 1997. The most leave or go without any paid leave. Many were significant increase in living donation has come not able to assume the financial hardship and from unrelated donors, such as spouses, friends opted out of donating. Others proceeded and and in-laws. There is much recent success with experienced financial and family hardship. Now liver and lung live donor transplants. these employees can receive up to 30 days (one month) paid leave when they donate an organ, Hopefully other employers, both public and up to 7 days if they donate bone marrow. private, will follow the example set by the Federal Government and UNOS. Living donation Patients in need of an organ transplant, can make an immediate difference to many T primarily kidney transplants, are often asked people needing a transplant. C

In Memoriam

The NKF is sorry to report that Wayne Nix, treatment centers around the country, a longtime NKF volunteer and patient groundwork for the development of local advocate, passed away in December councils, and regional educational 1999. Wayne was committed to programs for patients all were empowering patients to be begun. informed and take control of their health and quality of life. After receiving a transplant in His motto, "Dialyze to live, 1991, Wayne developed a don't live to dialyze," was the rehabilitation program for core message of every patients for the National Kidney presentation he gave. Wayne Foundation of Michigan. His challenged health care program in Michigan was professionals, asking them to adopted by the National always motivate and empower Organization and was launched as their patients. NKF's Rehabilitation, Information, Wayne Nix Support and Empowerment (RISE) Wayne was named chairman of program in 1999. the National Kidney Foundation's Patient and Family Council in 1999. Under Wayne's We will all miss this very good friend and leadership, a formal liaison program with dedicated volunteer.

4 Transplant Chronicles, Vol. 7, No. 4 ask the pharmacist Dietary Supplements for Weight Loss by Janet Karlix, PhD, and Phillip Treadwell, PharmD, BCPS

The advent of dietary and herbal Vitamin K content with warfarin must be supplements for weight loss has moderate and consistent. transformed the diet industry. In recent news, weight loss products that These supplements have contain ephedra have been linked to heart injury. become extremely popular and Heart damage and injury of other organs have also very profitable, and many been associated with its use. Other stimulants companies and individuals enjoy such as caffeine may be included in weight loss the financial rewards of their products and are probably safer than ephedra, but success. With all of the hype about still may induce irregular heart beats or anxiety these agents, it is no wonder that many people are among other nuisance side effects. curious about which one of these products would be right for them. There are hundreds of different The rest of the nutritional products available for brands of weight loss products available through weight loss would be best described as direct marketing, herb and nutrition shops and questionable for transplant patients taking even pharmacies and supermarkets. For immunosuppressants. This would include consumers to make an educated choice, is Gymnema sylvestre, Noni (Morinda) and many difficult. The best way to assess any herbal or others. These agents may be used by many people nutritional product is to look at the ingredient list without reports of adverse effects, but people and determine if the individual ingredients are taking immunosuppression are a special safe and effective. We will look at some issues population and should approach these agents with regarding these various products and try to lay caution. Drug interaction studies have not yet out some guidelines for safer use. been performed and many answers are still unavailable. Speak to your health care provider People who take immunosuppressants must before using any of these agents and carefully be very careful about the kinds of dietary assess and report any problems that may be supplements or herbs they use in combination related to the use of these products. This informa- with these drug therapies. Many herbal medicines tion can be important for you and others. T are known to act much in the same manner as C prescription drugs, but do not benefit from the Phillip Treadwell is a clinical specialist at rigorous study that pharmaceutical agents receive Tallahassee Memorial Healthcare. prior to FDA approval. This leaves a vacuum within which we must determine which agents Weight Loss and Fiber may be safe when combined with an agent like cyclosporine. Considering the potential High fiber products for weight consequences of errors made based on a lack of loss are generally safe because information when choosing a supplement, it is they act by providing a feeling best to err on the side of caution. of fullness with very few Supplements that are designed to reduce weight calories. Important points to through simple calorie restriction (e.g., Slim Fast, remember with the use of fiber etc.) are typically safe if used in moderation and products: according to the manufacturer’s guidelines. These • take them with a full glass (or more) of products do not attempt to alter the metabolism or water to prevent constipation interfere with absorption of nutrients. Therefore, • avoid taking them within two they are very unlikely to adversely interact with hours of medicines to prevent medicines or food. One caution with these potential problems with absorp- products is for people taking warfarin (Coumadin). tion of the medicines from your When taking this drug, you must be very aware of gastrointestinal tract. the vitamin K content of the supplements you use.

Transplant Chronicles, Vol. 7, No. 4 5 keeping fit One Size Does Not Fit All by Vanessa A. Underwood, BS, AFAA, ACE

N o matter how simple your goals, you must choose the type of exercise you do and the intensity of the exercise based on your health, your lifestyle and your personal preference.

I wish I could tell you that there is a golden formula, but there are so many variables that will determine your workout program. You will need to consider your general health status, genetics, exercise history and where you live in choosing what program is right for you. So if you want to get fit, get ready to make some choices about photo credit Jay LaPrete your exercise goals. Remember, before you Athletes from the 1998 U.S. Transplant Games. begin any exercise program or routine, give you short bursts of a lot of strength, or do consult with your physician. you want muscles that will give you strength and stamina over a long period of time? A basic routine should be simple but structured. As a general rule, you should work For those of you who may want to do some out three days a week with at least one day off in strength training to increase your strength and between, so your muscles can rest and get stamina for competition at the 2000 U.S. stronger. An ideal workout would incorporate the Transplant Games consider the following following routine and take about 90 minutes. This techniques: routine should be your ultimate goal. You can adapt it to your level of fitness and progress each To Build Strength: day until you reach 90 minutes. do a small number of repetitions of fairly heavy weight to build strength the fastest ✔ A 10-minute warm up, to get blood flow to ✔ do 3-5 sets of each exercise per workout your muscles, walking, stair climbing ✔ do 3-8 repetitions per set ✔ 5-minutes of stretching, upper and lower ✔ use fairly heavy weights (75-85 percent of body. Hold each stretch 20-30 seconds. your one repetition at maximum, that is the ✔ 30-minutes of weight training, essential to heaviest weight or close to the heaviest weight gaining strength and stamina you can lift at once). ✔ 30-minutes of aerobic activity, the key to healthy heart and lungs, and for weight Note: you must take a day off to recover management. and allow your muscles to rebuild. ✔ A 5-minute cool-down. Cut the warm-up pace and activity in half. To Build Stamina/Endurance: ✔ 5 more minutes of stretching. This can be the Muscular endurance is all about not resting. same as you did above. The longer you do this the more you will extend the time that your muscles and your body can But remember I said IDEAL...that doesn't endure any activity. Here is your basic plan for mean if you do 30 minutes or 60 minutes that endurance training: you won’t benefit. ✔ lift many repetitions with low weight, ✔ do 2-3 sets of each exercise per workout Now it’s time to decide how much of each ✔ do 12-20 repetitions per set weight you need to lift. In order to decide this, ✔ use light weights (defined as 50-60 percent of you must determine your goals, and what you one repetition at maximum) want to train for. Do you want muscles that will Continued on page 15

6 Transplant Chronicles, Vol. 7, No. 4 health maintenance On the Road Again—Traveling After Your Transplant by Cheryl Jacobs, LICSW

O ne of the many pleasures and conveniences _ If you are diabetic, bring glucagon and of receiving a transplant is having the ability to diabetic supplies so you can make a quick travel comfortably again. Whether you travel for adjustment if necessary. work or pleasure, upcoming summer vacations, _ the 2000 U.S. Transplant Games or the possi- Bring plenty of sunscreen. bility of spontaneous travel (considering the oc- _ Inform your travel agent, airline carrier casional airfare price wars), there are some things and final accommodations in advance if you have you should always remember before you leave. any special dietary requirements. You should _ Pack any relevant medical records or also tell them if you have any special needs identifying information, including a list of daily during your travels so they can plan for medication, allergies and the names and phone appropriate assistance, transportation and numbers of your physicians, transplant center seating arrangements. and family members. A medical ID bracelet can _ You may want to ask your agent about be purchased at a nominal fee from most travel insurance in the unlikely event that you National Kidney Foundation affiliates. might need to cancel for change your travel _ Inform your health care team of your travel plans. and where you can be reached if you will be away _ Surf the World Wide Web if you, your for an extended period of time. Complete any family or friends or travel agent have access. It’s routine checkups or blood work prior to your amazing how much information you can find on departure. Finish any tests or consultations with the Web about destinations, accommodations, specialists before you leave. Obtain the names of restaurants and activities. physicians or transplant centers nearby your travel destination in case you need a contact The Web has information for travelers with during your time away. Your transplant center disabilities about vacations such as safaris and may be familiar with professionals wherever raft trips. These websites can help travelers with you’re visiting. disabilities plan a hassle-free and fun vacation. Disability Travel Services (http://www.dts.org) _ If appropriate, obtain proper vaccinations may be a good place to being the search. Access- for your travels before you leave the country. Ask Able Travel Source (http://www.access- your physicians or consult a local travel clinic for able.com) and the Society for the Advancement the vaccinations that are required for certain of Travel for the Handicapped countries: make sure they know that you are a (http://www.travelagency.com/ page12.html) transplant recipient. Some vaccinations need to are other sites worth a look. be given a long time before you travel in order to be effective. You will find that the extra effort that you put into planning your next trip will be worth it. _ Keep your medications with you, not T Happy trails! C packed in luggage that will be checked. Your flight could get delayed, or your luggage could get lost. Your traveling buddy or strangers may have aspirin, but it’s highly unlikely that they will have If you would like more anti-rejection medications. information about traveling _ If you’re away for an extended period of after your transplant, time, make sure that you will able to replenish please call the NKF at your supply, and understand how you will be (800) 622-9010, ext. 118 or billed. Mail-order pharmacies may be able to ship e-mail [email protected] them to you at your travel destination. to order the Travel Tips _ Bring an emergency allergy kit if you have brochure. allergies.

Transplant Chronicles, Vol. 7, No. 4 7 Living Donor Transplant Consensus Conference 2000

by Laurel Williams Todd, RN, MSN T he National Kidney Foundation (NKF) is experts in the fields of kidney, pancreas, lung, organizing yet another exciting consensus liver and intestinal transplantation, barriers and conference. The Living Donor Transplant incentives to living donation and future Consensus Conference on the challenges and directions of living donation. Breakout sessions opportunities of living donation is scheduled for will address and make recommendations on June 1-2, 2000. The National Kidney Foundation informed consent, long-term follow-up, organ is pleased to partner with the American Society of specific medical and surgical challenges and Transplant Surgeons and the American Society of opportunities and needed resources for living Nephrology in this project. The stated purpose of donors and their family members. the conference is to clarify the medical, psycho- social and ethical issues pertaining to living The short-term goal is to produce a White donor organ transplantation. Paper that identifies the multitude of issues surrounding living donation. The long-term goal The NKF’s interest in living donation started in of the multidisciplinary group is to increase the 1992, with a conference entitled “Controversies in number of lives saved each year by living Organ Donation.” That initial conference looked at donation and transplantation. various ways to increase organ donation, includ- Note: Look for updates about the consensus ing financial incentives and living donation. conference on living donation on the NKF T Recommendations from that conference reinforced Website, www.kidney.org C NKF’s beliefs that something should be done to increase living donation and that it needed to be “Transitions in Transplantation: done in a responsible way, providing professionals A Continuum of Care” and prospective donors with accurate information.

With the demand for donation continuing to surpass donor organ availability, the NKF felt it imperative that the question, “Do you have a The National Kidney Foundation and the North donor?” be asked more frequently and routinely. American Transplant Coordinators Organization Standardized educational materials for anyone who might have the potential to be a living donor are partnering to present “Transitions in is also lacking. Transplantation,” sponsored by SangStat, the Transplant Company. In conjunction with the As part of the NKF’s search for answers and U.S. Transplant Games, this unique program is solutions to these questions, a number of focus designed to focus on how transplant profes- groups were conducted with centers who were sionals assist recipients and donor families deal doing living donor transplants. Through these with life’s changes. The program, scheduled for focus groups, the NKF discovered a need to June 21-23 in Orlando, Florida, will include share protocols on living donation in both the specific topics for procurement professionals, medical and educational arenas. It also found bereavement specialists, transplant social much interest from among the professional transplant societies to explore the issues workers and transplant dietitians. There will also surrounding living donation. be multidisciplinary sessions to unite and enrich all those working with transplant recipients and A steering committee was formed to brainstorm donor families. the topics and the format for the national This program will be held at the Hyatt Orlando consensus conference on living donation. during the U.S. Transplant Games and will Physicians, nurses, social workers, psychologists, lawyers, the general public (including living include the opportunity to participate in Games donors and recipients) make up this steering special events. For more information, including a committee. registration form, contact the National Kidney Foundation at 1-800-622-9010 or visit our The proposed two-day conference agenda will website at www.kidney.org. include overview presentations from medical

8 Transplant Chronicles, Vol. 7, No. 4 Transplant News Digest

Winter Edition of Transplant Chronicles Secretary Shalala asks transplant community to trust HHS desire to make transplant system fairer by Jim Warren, editor and publisher

President Clinton signed the Ticket to transplant surgeons themselves, is the way we Work and Work Incentives Improvement Act of ought to go. We believe we ought to have 1999 (H.R. 1180) into law on December 17, constant improvements as the science changes 1999. The bill contained a provision extending to make our transplant system better than it the moratorium on implementation of the already is. We’ve had marvelous breakthroughs Department of Health and Human Services and the transplant community ought to take all (HHS) regulation of the Organ Procurement and the credit for these breakthroughs. But we did Transplantation Network (OPTN) for 90 days. need to make improvements in the current The HHS rule is now scheduled to go into effect system. That's what the new rule's about. on March 16, 2000. TN: One of the ongoing arguments is that the Transplant News sat down in mid-December secretary should not be able to make medical with HHS Secretary Donna Shalala to discuss policy. That it is best left to the transplant the new moratorium, the Department’s plans community. And yet you’ve addressed that in for reauthorization of the National Organ the regulation and said we do address this in Transplant Act, and her thoughts about the the regulation. You make the policy. Why is this continued stand-off between HHS and some still an issue? members of the transplant community over implementation of the HHS regulation. SHALALA: I don’t know. There’s still a lot of distrust in the discussion that we're having and HERE ARE EXCERPTS FROM THE INTERVIEW we need to get beyond that distrust because we WITH DR. SHALALA: have made it very clear that medical decisions and medical criteria, ought to be determined by TRANSPLANT NEWS: For the second year in a the medical professionals themselves. We have row, Congress put a last-minute hold on the repeated that over and over again. The one implementation of the regulation. What is the thing I can say about this department is that we fight all about? Why is it still going on? have all been consistent in what we've written, and what we've said. And we couldn't have been DONNA SHALALA: clearer. Our whole process has been trans- I wouldn't describe parent. We’ve said this at at least five hearings. it as a fight. I’ve said it repeatedly, that these decisions There's certainly a ought to be made by medical professionals. fundamental disagreement here, TN: Senator Jeff Sessions, one of the leaders but what we're all in getting the moratorium extended, said after is what's best Republicans cannot allow Secretary Donna for the patient. We Shalala, an unelected bureaucrat on Congress… believe that a fairer You aren’t an elected official—what role system, based on should Congress play in this, vis-à-vis, medical criteria, the department? determined by the

Transplant Chronicles, Vol. 7, No. 4 9 SHALALA: Well, Congress has a key role dealt with. We need to get over that and focus on obviously. We make recommendations for policy. the patients and improve the quality of the Also the reauthorization of the transplant act in system that we currently have. That can only be part Congress’s role. There are different done if we move forward together. And I'm very branches of government; we all have different confident that at the end of the day we will in responsibilities. The Institute of Medicine (IOM) fact have a fairer system, a system that's based report has made it very clear that the govern- more on scientific evidence and on the ment of the United States has a legitimate remarkable changes that this community has interest and accountability responsibility in this been responsible for. area for the policies that are made. But look at what congress asked us to do. They asked us to TN: Everyone seems to agree on one thing—if do a study by the IOM; we’ve done that. They there were enough organ donors to go around, asked us to consult with the transplant this would not be an issue. Yet many believe, community; we have clearly done that. And myself included, that the irony is this very public they've asked us to come up there repeatedly fight impacts on people deciding not to donate, and explain what we're doing and why we're that it has fed into their fears about the system. doing it. We have followed every directive that the How do you respond to this and what would you congress has given us, including comment like to see happen? periods and broad consultations. We followed the guidelines and implemented the recommenda- SHALALA: First of all, the department and the tions of the IOM. So everything that congress has Clinton administration are vigorously working asked us to do, we have done. with the transplant community pursuant to increasing the number of organ donors—both in TN: The regulation is now scheduled to be our rules related to the Health Care Financing implemented sometime around mid-March. That Administration and Medicare and hospitals, as gives Congress about a two-month window to well as the national campaigns… with our hold hearings on the reauthorization of the partners, the number of organ donations are National Organ Transplant Act. What do you actually up by six percent. However, all of us expect to happen and what are your feelings fear that if we continue the kind of acrimony about the regulation? that we've had, that people perceive it, that the system is unfair, that that will affect their SHALALA: I expect those to be a thoughtful set behavior. We cannot take that chance. And we of hearings in which we will again repeat that we need to work through the distress that currently believe the transplant community itself ought to exists in the system. I pledge myself to do that. A set medical criteria. We have a good system. It lot of it I will do personally. I know that we can can be made much better. So we will repeat that get over this because at the end of the day, this during the hearings. I expect Congress to take a is about quality health care. This is about thoughtful look at the existing law in the process fairness. And this is about life and death, so of determining the reauthorization of the law. I fundamental to what all of us care about. believe that we will have directives, the kind of directives that we have laid out in our rules TN: If you could say one thing to the transplant being implemented. So, I think that we all ought community to sum up this issue and what they to get on with this, because what we're interested can expect for the year 2000, what would that be? in is the patients. SHALALA: We can do this together. We have to TN: You sound very confident that the regulation restore trust. We have to be able to communicate eventually is going to be implemented. Are you? with each other. The transplant community has to believe us when we say that we want SHALALA: We need to work on this issue of trust medical criteria to be determined by medical with the transplant community. There's more professionals. We have said that repeatedly. The distrust on this issue than any issue I've ever department has done that repeatedly in a whole

10 Transplant Chronicles, Vol. 7, No. 4 set of areas. And there's no reason not to believe patients to go to centers with poor results, the that we will do that now. authors concluded. Information regarding the outcomes of liver transplantation at SMALLER LIVER TRANSPLANT CENTERS HAVE transplantation centers should be made widely HIGHER MORTALITY RATES, ACCORDING TO available to the public in a timely manner, they UNOS STUDY added. Because organs are distributed geographically, Centers performing 20 or fewer liver trans- patients at large medical centers tend to plants annually have mortality rates that are languish far longer on liver transplant waiting significantly higher than those of centers doing lists than their counterparts at smaller facilities. more than 20 such procedures each year, but As a result, the current distribution system the public is unaware of these differences, creates a perverse incentive that drives people to according to a study in the December 30, 1999 smaller, less-experienced centers, thus propping issue of The New England Journal of Medicine. up institutions with higher mortality rates. The new Department of Health and Human Services The one-year mortality rate for the low-volume regulations, scheduled to take effect in March, centers [during the period between January 1, could reverse this situation by assuring that 1992 and April 30, 1994] was 25.9 percent, as scarce livers are available first for the sickest compared with 20 percent for the high-volume patients, who tend to be cared for a large, high- centers, reported Erick Edwards, PhD, of the volume university medical centers. United Network of Organ Sharing (UNOS) and co-authors from the University of California at RESEARCHERS REPORT MAJOR OBSTACLES San Francisco, University Hospitals of Cleveland, TO ANIMAL-TO-HUMAN TRANSPLANTS ARE Ohio, and the University of Iowa College of BEING OVERCOME Medicine in Iowa City. Thirteen centers, all of which had low volumes, had one-year mortality Data presented at a xenotransplant conference rates that exceeded 40 percent, and the rate at held in Boston, MA, in early December suggest one of these centers was 100 percent. that researchers are making headway in overcoming some of the major obstacles to The effect on mortality of the number of animal-to-human transplantation. procedures performed per year was even greater when low-volume centers affiliated with high- Scientists BioTransplant, Inc. announced they volume centers, such as pediatric transplant had developed an inbred group of miniature pigs programs, were compared with non-affiliated that do not pass on porcine endogenous low-volume centers. The one-year mortality rate retrovirus (PERV) to human cells in the for the group of all high-volume centers plus laboratory, unlike all other breeds that have affiliated low-volume centers was 20.1 percent, been tested. Clive Patience, leader of the compared with 28.3 percent at unaffiliated low- BioTransplant team, believes the discovery of a volume centers (P<0.01), according to the non-infecting pig line could eliminate one of the investigators. biggest concerns about xenotransplantation. “Disease transmission is the last thing any of us Presumably, patients requiring liver wants,” he said. transplants would steer clear of centers with high mortality rates, if they were informed about Two other research groups represented at the survival statistics and had a choice as to where meeting said they may be close to producing the their transplants would be performed. The fact first clone of an adult pig, a research milestone that 837 transplants were done at low-volume that could allow scientists to make copies of centers during the study period suggests that genetically engineered swine whose organs the information available to patients and would be compatible with the human immune referring physicians is inadequate, or that system. Researchers at PPL Therapeutics, Inc., regional health care systems may be forcing the company that created Dolly the sheep, the

Transplant Chronicles, Vol. 7, No. 4 11 first cloned mammal, reported advanced proposed new guidelines on such procedures. pregnancies with cloned pig fetuses although no They include a ban on all patients having births yet. Pigs are especially difficult to clone children following xenotransplantation, together because sows need at least four gestating with rules governing the welfare of animals bred embryos to maintain a pregnancy, said David for transplants. Ayares, PPL’s vice president for research and development. But according to Robert Lanza, a NEW YEAR BRINGS HAPPINESS IN FORM OF scientist at Advanced Cell Technology, the effort LIFESAVING TRANSPLANT TO 8 LUCKY is worth the potential payoff. “Once we’ve cloned PATIENTS AT ILLINOIS TRANSPLANT CENTER the first pig, that will accelerate the whole field of xenotransplantation dramatically,” he said. The cry Happy New Year! took on added meaning at the Loyola University Medical Center Jonathan Dinsmore of Diacrin, Inc. reported in Maywood, IL, as the institution reported sustained success in treating Parkinsons disease performing eight major organ transplant surg- patients with brain tissue from fetal pigs—an eries, including four on New Year’s Eve and three approach that could avoid the controversy over more during the first four days of the new year. the use of human fetal cells. Since trials began in 1995, Dinsmore said that, on average, The year-ending series of transplants began on patients receiving implants of pig fetal tissue December 30 when a 65-year-old man received a have improved about 20 percent. With some, this heart transplant. When the amazing run had advance could mean the difference between ended, the surgeries included a liver, a kidney being in a wheelchair and being able to get up and two heart transplants in four separate and walk. Similar studies are underway for the patients on New Year’s Eve; a second kidney treatment of Huntington’s disease and stroke, transplant on New Year’s Day; a double-lung and Dinsmore foresees applications for epilepsy, transplant on January 2; and a heart transplant chronic pain and spinal cord injuries, as well. on January 4. A woman in her 50s became Loyola’s first Biotech industry leaders predict transplant patient of 2000 when she underwent xenotransplantation could blossom into a $5 a kidney transplant on New Year’s Day. T billion business and relieve the organ shortages C and long waiting lists that today’s transplant patients face.

IMUTRAN CONFIRMS PLANS TO CONDUCT HUMAN XENOTRANSPLANT TRIAL IN 2000

A British biotechnology company is planning Are We Missing You? to perform the first transplants of animal organs into humans. If you or someone you know would like A senior executive of Imutran confirmed in to receive a free home subscription to December that the Cambridge, UK-based firm is holding informal talks with transplant clinics Transplant Chronicles, send your that could begin trials of the procedure within a request to Transplant Chronicles, year. A transplant team lead by Magi Yacoub, MD, of the Harefield Hospital in southern National Kidney Foundation, 30 East England is among those who have discussed xenotransplantation trials. 33rd Street, New York, NY 10016, or call (800) 622-9010. The news came as the UK Xenotransplantation Interim Regulatory Authority prepared to release

12 Transplant Chronicles, Vol. 7, No. 4 legislative update

1999 Legislative Roundup

ORGAN DONOR LEAVE ACT THANKSGIVING ORGAN DONATION RESOLUTION The House of Representatives and Senate passed legislation that will grant federal A new Senate Resolution is hoping next employees additional leave for bone marrow or Thanksgiving will find Americans not just giving organ donation. The House bill, the Organ Donor thanks but also considering giving the gift of life. Leave Act (H.R. 457), was introduced by Senate Resolution 225 designates November 23, Congressman Elijah Cummings (D-MD). The 2000, Thanksgiving Day, as a day to "Give Senate version (S. 1334), was introduced by Thanks, Give Life." The resolution encourages Senator Daniel Akaka (D-HI). The bill provides people to consider organ donation and discuss seven days of paid leave for bone marrow the issue with their families. donation and 30 days off for organ donation, in addition to existing sick leave. Previous policy WORK INCENTIVES IMPROVEMENT ACT provided only seven days of leave for organ donation. President Clinton signed the legislation The threat of losing health benefits has been a in September. disincentive for many of the disabled who want to work. Now a work incentives provision is offering MEDICARE AND MEDICAID REFORM new hope. The Work Incentives Improvement Act establishes Medicaid buy-ins that allow the Months of effort by NKF and its affiliates on disabled to work without losing Medicaid behalf of transplant recipients have proven coverage. It also allows the disabled to extend successful. Congress included a provision in the their Medicare coverage for up to 78 months. Medicare and Medicaid Balanced Budget Reform Under the provision, the federal government Refinement Act of 1999 to extend Medicare would cover the cost of Part A Medicare coverage of immunosuppressive drugs for premiums for disabled people. Additionally, it transplant recipients. The bill extends coverage establishes a demonstration project to extend for Medicare-eligible transplant recipients based Medicaid coverage to individuals with potentially on age or disability, for a minimum of eight disabling conditions. The legislation provides for months for beneficiaries whose benefits under rehabilitation, job training and placement current law expire between January 2000 and services and allows states to provide Medicaid December 2004. The bill authorizes $150 million coverage to workers who are not yet classified as for additional coverage. disabled, but have medical problems that are expected to become debilitating. NKF affiliates and volunteers helped enlist additional cosponsors to H.R. 1115 and the NETHERCUTT RESOLUTION Senate companion bill S. 631. Affiliates and volunteers conducted meetings with key A resolution recognizing living kidney donors members of Congress or their staffs in their state for their life-saving contributions has passed the offices and the NKF Scientific and Public Policy U.S. House of Representatives. Introduced by Office staff met with congressional staff in Congressman George Nethercutt (R-WA), House Washington, D.C. on numerous occasions. The Resolution 94 also acknowledges the medical and House bill had 264 cosponsors and the Senate technological advancements that have made bill had 24 cosponsors, with broad bipartisan living kidney transplantation a viable treatment support. This support represents approximately option for an increasing number of patients with T three times the number of cosponsors who had end stage renal disease. C signed on to identical legislation in the previous Congress.

Transplant Chronicles, Vol. 7, No. 4 13 eating right Should I Try the “Protein” Diet? by Becky Weseman, RD, CNSW, LMNT

In the past months, increasing interest has Being in a state of severe ketosis can increase the surrounded the high-protein diet. The theory acidity of the blood and be deadly. behind this diet is that it can promote weight loss I’ve heard this diet can eliminate my non-insulin and also reduce the chance of non-insulin dependent diabetes. Is this true? dependent diabetes. The idea that a high-protein diet will reduce the If you've been considering trying this kind of diet risk of non-insulin dependent diabetes by avoiding for yourself, there are a few questions you should foods that cause a rapid rise in blood sugar and ask. What does this diet include? What am I trying insulin is still being researched by medical to accomplish for myself? Does this way of eating professionals. Increased insulin levels in the blood really work? What is the risk if I eat this way? from eating higher amounts of carbohydrates and causing fat storage and increased cholesterol levels Health professionals may not yet know all the may not be this simple. Increased insulin in the answers to these questions. Here are some blood should not promote fat storage unless a questions frequently brought to our attention. person eats too many calories. Non-insulin What is a fad diet? dependent diabetes is often a result of insulin resistance, or the inability of cells in the body to A fad diet is one that is tried and followed for a pick up insulin. For people with non-insulin short period of time, that is not considered a life- dependent diabetes who are overweight, losing long change in the way of eating and one that does weight by decreasing calories and increasing not provide all the essential nutrients needed to exercise until they reach a more appropriate keep us healthy. weight for their height may be more helpful than Do people really lose weight by eating a diet simply restricting their diet to protein. consisting only of meat? Is this a healthy way to lose weight? In fact, many people have tried and lost weight on this altered way of eating. For a fairly healthy Even though a high-protein diet will promote dieter, following the high-protein diet will often weight loss, it is not a healthy way of eating. A result in a loss of appetite and weight loss because pound of meat each day might seem like a lot to of increased water loss. When the body burns its eat, but this is still a low-calorie diet, because one glycogen stores (a substance stored in the liver pound of even high-fat meat provides about 1,300 and muscles that absorb water) the body is unable calories. Consuming a variety of foods from all the to hold on to water. Weight loss that is seen on the major food groups but limiting their calories to this scale may be in large part only due to water loss level would still produce a weight loss, but in a when this diet is initially started or only followed healthy way that provides vitamins and other for a short period of time. The increased danger important nutrients. with this diet comes with following it for a Is there a healthy way to diet? prolonged period of time. Eating a balance of carbohydrates like pasta, Are there any adverse side effects of this diet? bread, cereals, fruits and vegetables along with When you consume only protein such as eggs, meat, milk and dairy products can provide the bacon and sausage, steaks and other meats that balance of energy-producing foods at a low enough were previously considered taboo to eat in large calorie level to allow for weight loss while still quantities, your body is forced to break down fatty providing the energy to think clearly and feel more tissue for the production of energy to keep you energetic! running! But this can throw you into a state of Remember: If a diet sounds too good to be true ketosis, a condition in which the body releases it often is. The healthiest way to eat is still by chemicals called ketone bodies in the blood and following the guidelines of the Food Guide T urine. Being in a state of ketosis is especially Pyramid! C dangerous for pregnant women, people with Note: Please consult your physician before you begin any diabetes, and people with liver or kidney problems. weight loss regiment or diet plan. 14 Transplant Chronicles, Vol. 7, No. 4 poetry corner poetry corner

to hide my fear, Prime Candidate to stop that falling tear. by Jeff Degnan But I have to ask, for someone The wait is great, for to come to task, to give a kidney I'm a Prime Candidate. & not a Jeepney. Every protein marker checked, every DNA strand scanned, down to the For that donation is precious, mitochondria. for it is my life I beg. Heart cauterization once a year The stress is high, but I have to wait Oh dear! for I am a Prime Candidate.

Infinite yet unique, for everyone has two God bless you mother, & I need one, as I went from two to none! for keeping me sane, Find a cross match the toxins in my body & the surgeon can patch. being such a strain. a life renewed, will hatch. Each day the dialysis causing a stain, the dialysate solution I drain I am proud, then fill until - T so my voice is loud, for I am a Prime Candidate. C

One Size Does Not Fit All continued from page 6

Keep rest periods short, 30 seconds between stamina and tone, medium efforts, for longer. sets. By doing this your muscles learn and adapt For a good balance, build a program that mixes to longer activities. it up, because most athletes need a combination. To achieve this balance, you need to combine the In sum, for sheer strength, try lifting lots of principles of both. heavy weights for short periods; for muscular ✔ do 3-5 sets per workout

✔ do 8-12 repetitions per set, 10 being optimal

✔ use moderate weights (defined as 70-80 percent of your one repetition at maximum)

By incorporating these elements you are building a well rounded body and training yourself to handle almost any physical situation. Should you need any advice on sport specific training please contact me at T [email protected] C

Photo credit Jay LaPrete Cycling competition from 1998 Games

Transplant Chronicles, Vol. 7, No. 4 15 medical beat Treating Liver Cancer with Transplants by R. Patrick Wood, MD

I n the last several years, there has been a Because the result of transplantation was so renewed interest in the role of liver transplanta- good in patients with small tumors and so poor tion in patients with liver cancer. In the early when the tumors were large, UNOS recently years of liver transplantation, many patients with revised the allocation policy for patients with large liver tumors, which could not be treated by small liver cancers. Now, patients who have removing the tumor with surgery, underwent cirrhosis of the liver and a small (less than 5 cm) liver transplants. The results, unfortunately, liver cancer are given an additional priority to try were quite poor; most of the patients died of to get them a transplant before their tumor recurrence of their liver cancer within two years grows too large. It is too early to evaluate the of their transplant. This group of patients with results of this policy change, but it certainly will this condition were largely abandoned as increase the number of patients undergoing liver candidates for transplantation. Even today, liver transplantation with small liver tumors who can transplantation for patients with large liver be successfully treated with this therapy. cancers is very limited. However, liver Patients with tumors that have spread to the transplantation remains the best possible liver from other areas (so-called metastatic treatment for patients who have small (less than tumors) have, in the past, been treated 5 cm) tumors in a liver that is already with liver transplantation. However, cirrhotic (damaged by cirrhosis). In fact, even the results of treating patients with if the tumor could be treated with metastatic liver cancer have been surgical removal, the long-term extremely poor, and most transplant survival was much better in those programs have abandoned the use of patients who received a liver liver transplantation in treating them. transplant than those patients who The exception is a small group of were treated by simply removing the patients whose liver cancer is cancer. characterized by neuroendocrine Many transplant centers have tumors, which are very slow adopted the practice of screening growing. While the results of patients who are awaiting liver transplants for transplantation in this group of patients are not liver cancer. This has led to a dramatic increase as good as those patients with benign disease, in the number of patients being discovered with they are still quite acceptable. small cancers in their cirrhotic liver. Before this, patients with cirrhosis who developed liver In summary, liver transplantation is an cancer were given no special consideration in the excellent therapy for patients who develop small national liver allocation system. This meant that cancers in their cirrhotic liver. These patients many patients who had small liver cancers and now are afforded additional priority on the who would have been good candidates to receive national liver allocation scheme and appear to a liver transplant would have to wait years for do quite well with liver transplantation. This their transplant. During this time, the cancers group of patients represents the major exception would often grow to such a size that the patient to the rule that patients with a prior history of went from being a good candidate to receive a cancer are poor candidates to undergo T liver transplant to being a very poor candidate transplantation. C simply by the size of the cancer.

16 Transplant Chronicles, Vol. 7, No. 4 Is Managed Care Creating a New Category for Lost Donors? by Teresa Shafer, RN, MSN, CPTC and Ronald N. Ehrle, RN, BSN, CPTC

H ospitals and physicians work primarily staff to pose the question of organ donation to under fixed payment reimbursement systems. the family. In today’s decreasing reimbursement The challenge for them is to provide high-quality climate, this process is often turned upside health care through the efficient use of health down. In a hurried consent process, a physician care services, or as many would say, limiting the or hospital staff person instructs the OPO to ask use of health care services in order to preserve the family for donation soon after a DNR order is the bottom line. written, or worse yet before the patient is declared brain dead. The message sent is: If they Increasingly, the amount of resources are not going to donate, we are going to remove expended for the care of a patient who is not support; and this may present a confusing going to survive a life-threatening injury is limited picture to a family whose loved one had been in order to avoid expending resources that will admitted to the hospital only hours before. not change the outcome of the injury or illness. A hospital attempt to reduce length of stays Hospitals and physicians may not be aware and to avoid futile care expenses is driven largely that decisions to terminate care in the severely by managed care and reduced reimbursement to neurologically injured or diseased patient can hospitals for health care expenditures. This have a profound impact on organ donation. It is shortens the treatment time that used to be given already difficult to recover organs from brain to patients with devastating head injuries. Most dead patients where treatment was not families do not wish to prolong treatment for a terminated early, without the loved one when it is clear he or she additional burden of terminating will not survive. The question of care on these patients shortly after withholding resuscitation needs to admission to the hospital. Patients be posed at the right time, however. with massive neurological injuries, Whenever possible, it should be who are progressing to brain death ascertained whether the patient is and for whom a physician would eligible to be an organ donor before consider ongoing aggressive the DNR decision is made, since treatment futile, should be brain death normally occurs fairly supported for a short period of time, rapidly when there is devastating (i.e., 12 to 36 hours). This very brief time allows injury to the brain. the family not only the time to come to terms with the event, but it also allows them the All of this means that the OPO must be called opportunity to donate life-saving organs to early following admission of a patient with a another individual. A system that encourages a devastating event (injury or cerebral hemor- physician to confer with a family of such patients rhage). The OPO can then follow treatment of early on about Do Not Resuscitate (DNR) orders the patient and, along with the physician and may be limiting the ability of the family to donate. hospital staff, offer information, treatment and, ultimately, the opportunity to donate organs to Early referral of all imminent deaths to OPOs the family. can result in the OPO conferring with the physician early and asking to continue treatment The impact of managed care on organ for a period of time. Early notification of the OPO donation should be studied in order to develop is critical in order to ensure that care of potential interventions to prevent the loss due to T organ donors not be prematurely terminated. managed care pressures. C

After, the physician informs the family of the patient’s death, the OPO works with the hospital

Transplant Chronicles, Vol. 7, No. 4 17 Between Donor Families & Recipients Ordinary Heroes by Lauretta Kelty

M y brother Ron was diagnosed with juvenile passed all the medical tests and we needed to diabetes when he was 11 years old. The last 10 set up a date as soon as possible for the surgery. years of his life have been marked by medical I felt like I had won the lottery! I was lucky complications; among them kidney failure. In enough to be one of those who have directly 1997, his kidney failure forced him to go on been able to extend the life of a loved one—my dialysis. He began to suffer painful bloating of 46-year-old brother. his body and he soon was unable to continue working. In July 1999, he was told he needed a On November 5, 1999, my brother and I had kidney transplant. the transplant surgery. On November 16 my transplanted kidney started working for Ron, It was very painful for me to see the life being and on November 23 Ron went home to enjoy drained out of my younger brother. It was very Thanksgiving with his family. At this point it important for me to do all really hit me and my family that being I could to extend his life alive is a miracle and being aware of your long enough for him to life is a gift. Our family has so much to be see his four beautiful thankful for this year! children grow up. Since Ron and I went through the I knew that the best transplant process, my family has become organ for a transplant closer and more appreciative of each other. comes from a living I’ve been experiencing an overwhelming donor with a blood and sense of pride and this strange inner tissue type compatible peace. with the recipient. I was quickly tested for I'm still recovering from the surgery. I compatibility and in am very proud of the scar I wear. I was August 1999, I found out back at work full-time in January 2000. my blood type matched Ron's. I then had to talk Reviewing my to my employer about the 48 ordinary possibility of taking a years of life, Ron with his couple of months off from there is one daughter Christi work for the surgery and thing I have (above) and recovery. With the recently Lauretta with her support of my wonderful discovered that sons John and employer, family and will forever affect Patrick—post friends, I continued with my future—even surgery. more extensive testing. though we may The next two months be ordinary were spent testing my general health and tissue people, we have the ability to do extraordinary T typing. Soon I received the call from the things. C University of Utah Hospital’s Transplant Coordinator in October telling me that I had

18 Transplant Chronicles, Vol. 7, No. 4 Thanking Your Donor Family by Maurie Ferriter A fter receiving a transplant, most of us have how the transplant has affected one’s life does thoughts about our donor. In the case where an not need to be long and involved. The underlying organ has come from a living person, it is easy to message is usually just “thank you.” If a recipient communicate our feelings about the transplant is struck with writer’s block and just can’t follow experience with the donor, who is usually a through with a letter, a simple card can say family member or close friend. This is true everything needed in two words: thank you. primarily in some kidney donations. For the majority of kidney transplants and almost all As recipients, we have relied on medical other organ and tissue transplants, the donor is professionals, family members and friends, someone who has died and whose family has financial helpers and others who have helped us consented to donation. This process has get to this point in our lives where a transplant traditionally been anonymous, meaning the has given us this second chance. But, all of this recipient does not know the identity of the donor outside help would be useless had the family of or have the ability to contact the donor’s family. our donor not consented to donation. We need to take the lead in being responsible to ourselves The system that has been set and to the donor family and say up for recipients to communicate thank you in some way. This with the donor family has been needs to be done without any through the organ procurement expectation of return contact. If we organization (OPO) that never hear from them, we must coordinated the donation. National respect their right to privacy. Recipients can write a letter and Commun cation give it to the OPO, which will Guidelines For information about forward it to the donor family. [If Regarding Communication Among: communicating with donor I Donor Families the donor family chose to respond, I Transplant Candidates/Recipients families there are several their letter would be forwarded to I Health Care Professionals resources available. The National the recipient through the OPO.] Kidney Foundation’s Donor Any identifying information would Family Council and transAction be deleted from either Council Websites correspondence by the OPO. This includes things (www.kidney.org) both have a lot of great like last name, phone number, address and any material including letters. The Transplant text that would lead to disclosure of the donor’s Recipients International Organization (TRIO) also identity. has sample letters on their website (www.trioweb.org) or you can call them at (800) For some recipients, this process by itself is 874-6386. The Transweb Website enough to discourage them from relaying their (www.transweb.org) has a great collection of feelings about their transplant. Some people do stories from donor families and recipients, in not want their words to be read by a stranger in addition to lots of other transplant—related an OPO. For others, however, the biggest information. obstacle to writing a letter to the donor family has been not knowing what to say, or how to say Other good sources of information and it. Others need to sort through many mixed encouragement are at your transplant center. feelings about the recent events. Feelings of Coordinators, social workers and most of all, sadness, guilt, happiness and thanks are not other patients, can relay their own experiences uncommon. in writing their donor families. Professionals can help a great deal because they have probably Surveys of donor families have shown that assisted many other recipients in this process. many families do want to hear how the And, the next time you are in the transplant recipients are doing. The message in this is that clinic waiting room, ask other patients if they we, as recipients, should make the effort to have written their donor families. You will find a express our feelings to the family. A simple, wealth of help and informational tips available T short letter can be very effective. A description of to you. C

Transplant Chronicles, Vol. 7, No. 4 19 K i d s Holiday Party for Transplant o Recipients, Family and Friends r and Health Care n Professionals e r

at St. Christopher’s Hospital for Children in Philadelphia, PA.

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: 2000 U.S. Transplant Games; Transplant Chronicles; and transAction Council programs.

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