Transplant Chronicles

Volume 5 A publication for transplant recipients of all organs and their families, Number 3 published by the National Kidney Foundation, Inc. A s I ran off the Verrazano friend, Gary Censoplano, had Narrows Bridge—which been right in urging me to turn connects Staten Island to my marathon attempt into a Brooklyn—on the cold, crisp celebration of life and promo- Buddhism, New York morning, I could see tion of organ donation. Gary spectators lining both sides of had always been supportive of the road. My heart started my racing, which I used to pumping wildly and the rehabilitate myself and regain Transplants adrenaline began flowing confidence and control of my uncontrollably. New Yorkers life—after receiving a liver love their marathon, and more transplant in the early, expe- and than a million hearty souls rimental days of transplantation turned out that day in performed on hepatitis B November 1996 to cheer the patients more than 10 years Marathons runners. I suddenly realized ago. that my running partner and Continued on page 4

by John Robbins

The path exists, but not the man on the path.

John poses at the starting line of the New York City Marathon in Staten Island.

transAction! Transplant Chronicles is a COUNCIL Program of the National Kidney Foundation, Inc., supported by National Kidney Foundation ✍ editor’s desk Transplant Chronicles

f I have to use one word to I Transplant Chronicles is published by describe this issue of Transplant the National Kidney Foundation, Inc. Chronicles, it would be “contro- Opinions expressed in this publication do not necessarily represent the versy.” Transplantation exudes position of the National Kidney Foundation, Inc. controversy, especially within the areas of donation and allocation Editor-in-Chief: Beverly Kirkpatrick, LSW (the distribution of organs). We Philadelphia, Pennsylvania tackle these subjects in this issue, as well as laparoscopic donation, Editors: Beverly Kirkpatrick Ira D. Davis, MD Vanessa Underwood, BS, which has grown in popularity Cleveland, Ohio AFAA, ACE Plaistow, New Hampshire recently. Maurie Ferriter, BS Lakeland, Michigan Jim Warren, MS For many people, the word “controversy” conveys San Francisco, CA Cheryl Jacobs, LICSW feelings of negativism, but I hope that at least with Minneapolis, Minnesota Laurel Williams, RN, MSN Omaha, Nebraska this issue of Transplant Chronicles, it provokes Teresa Shafer, RN, discussion, which, in turn, may bring us closer to MSN, CPTC R. Patrick Wood, MD Ft. Worth, Texas Houston, Texas resolution. I invite our readers to respond to the Editorial Office: articles in this issue (as well as past and future National Kidney Foundation, Inc. issues) and to bring to our attention any topic you 30 E. 33rd Street, New York, NY 10016 (800) 622-9010/(212) 889-2210 want our editors to examine in the future. I look http://www.kidney.org T forward to your comments. C Executive Editor: Editorial Director: Diane Goetz Gigi Politoski Beverly Kirkpatrick Managing Editor: Editorial Manager: for the Editorial Board Sara Kosowsky Gary Green Design Director: Production Manager: Oumaya Abi-Saab Torey Marcus

Dash for Organ Donor Awareness Is Successful During National Organ and Tissue Donor Awareness Week, many organizations and communities hold runs and walks to promote donor awareness. Here, Transplant Chronicles looks at the largest and most successful of these activities. The second annual The event drew more Dash for Organ Donor than 1,200 runners and Awareness, a 10K run walkers to the and 3K walk, was held Philadelphia Museum of Sunday, April 20, to Art, where they stepped launch National Organ out to show support for and Tissue Donor organ donation and Awareness Week in the transplantation. Many of Delaware Valley and draw the participants received attention to the critical life-saving transplants need for organ and tissue from the area hospitals Howard M. Nathan (right), executive director of the donors. In addition to that perform organ Delaware Valley Transplant Program (one of the organizers raising awareness, the transplants. The event of the event, along with Liaisons for Life and the Coalition event raised more than also attracted some on Donation), is pictured with some of the patients and $35,000 to support donor of the region’s top health care professionals from Temple University Hospital, T awareness and education runners. C the largest team that participated in the Dash for Organ programs. Donor Awareness.

2 Transplant Chronicles, Vol. 5, No. 3 Functional Rehab: Something for Everyone by Maurie Ferriter, BS

This is part four of Transplant Chronicles’ to mean getting a college degree. It can be very five-part rehabilitation series. Rehabilitation was fulfilling to learn about something new. Many defined as “restoration of the whole person” in a people finish high school, get their GED, take previous article of this series. Employment, legal classes at a local community college or take and insurance issues have been addressed adult education courses through the public because they affect our lives as transplant school system. These can be rewarding from an recipients. Here, Maurie Ferriter focuses on educational standpoint, and may also open up functional rehabilitation and how you can make new social contacts. your life more productive and fulfilling. Volunteering is another way to put our new found energy to work for us. There are many When we talk about “functional organizations and causes to which we can rehabilitation,” we mean the ability to do contribute. We can educate the public about the something else with our life besides focusing on need for more organ donors by talking a little our chronic illness. This is especially necessary about ourselves and how the transplant has after a successful transplant, which changes our made a difference in our lives. To get started, life dramatically. Post-transplantation, we have a contact your National Kidney Foundation chance to recover some of the life we had before Affiliate, the local organ procurement we became ill, and we should make the most of organization or the transplant coordinator at the this opportunity. We may not be able to do local transplant center. Another way to educate everything we did before, but we should try to others is to write an article for a church bulletin attain the highest level of activity we can. or school newsletter. Doing local radio or Returning to an active lifestyle is a major step. television interviews can also promote the need. We can begin an exercise program slowly and Other volunteer opportunities are endless. gradually work harder. This can help us feel Churches, nursing homes, non-profit better and have more energy. And, we don’t have organizations and support groups all provide to join an expensive club, buy all the latest gear ways to become involved in local community and work out seven days a week. A simple activities that can be great experiences for the walking program is a great way to get started. In volunteer and very helpful to the organization. the winter, exercise can still be done in a local These opportunities can give us a sense of mall or shopping center. purpose in our lives that will restore confidence Once we have recharged our energy levels, we in ourselves and our abilities. They will help us can move on to other areas. One way of doing to go on to other activities, and let us enjoy the this is to further our knowledge base. Many of new found energy we have as the result of our T us have put school, training or educational plans successful transplant. C on hold. Educational enrichment does not have They’re All ❤

Eighteen pediatric heart recipients are pictured here, along with their cardiologist, transplant surgeon, transplant coordinator and transplant clinical specialists. All of these children received their new hearts at the Children’s Hospital of Denver. They get together every year for a special picnic and, along with their parents, enjoy each other’s company for fun and games.

Transplant Chronicles, Vol. 5, No. 3 3 “Oh no Gary,” I replied as we glided over Buddhism, Transplants… Memorial Bridge. “It’s a little fast, but I’ve never Continued from page 1 felt better. I’m loose, relaxed, confident. This is just great. What a wonderful day.” The year before, Gary promised to wait at the 20- mile mark and run the last stretch of the Marine When we reached the four-mile mark, the Corps Marathon with me, but his leg cramps eventual winner, who had already run nine miles forced him to keep going and finish hours ahead (the course was a loop), flew by me like I was of me. The next spring, after the annual Organ standing still. I fell apart. I was dropping further Donor Awareness Week 8K, one of the seven behind pace and ready to quit. To make things races in the Fredericksburg (Virginia) Area worse, I learned that I had made a dreadful Running Club’s Grand Prix series, he challenged mistake teaching Gary about Buddhism. It was me to run the entire New York City Marathon thrown back in my face constantly. No more than with him. I reminded Gary, who runs marathons 100 yards past the 11-mile sign, I saw a “12” on in the three-hour-plus range, that he would be the road and became convinced that we had just on the course with me much longer than his passed the 12-mile mark. Gary didn’t snarl at me longest and slowest training runs. Undeterred, and say it was impossible. No, not Gary, not the Gary pushed on, and so began what members of new Buddhist. the running club dubbed, “John and Gary’s Wonderful New York Marathon Adventure.” “John, don’t worry about that,” he told me. “Just stay in the In an apparent present. Be here attempt to inflict now. One foot in more punishment on front of another. See himself, Gary decided that cone up there? to accompany me on You can run that far. some of my long Just focus on that. training runs. I don’t Be a good Buddhist. know why. Perhaps Don’t worry about it’s his Italian Roman the next mile.” Catholic background that gives him a Gary continued strong need to atone speaking this way for for his sins. I mention the next 2.2 miles religion not out of any and dragged me disrespect; religion, across the finish more specifically line. Any longer than John (right), with fellow runners, Jim Kruger (left) and Art that, and I’m sure I Buddhism and my Michaels at the 1996 Transplant Games in Salt Lake City. experiences as a would have killed monk in Thailand, were the topics of discussion him. We still had another 20-mile training run to for our first 20-miler, as we ran through the get out of the way before heading to New York. Fredericksburg National Battlefield Park early on Realizing there was probably no hope of changing a steamy August morning. my form or pace, he changed discussion topics. Quickly ruling out politics, Gary shifted our When you run 20 miles at my pace, you really conversations to my liver transplant and organ get to know your running partner. Gary learned a donation. lot about Buddhism—perhaps too much, I was to remind myself later when we decided to practice My transplant ordeal, I told Gary, reached our pace together at the MS Challenge Half marathon proportions, stretching over three Marathon in Washington. It was a learning years and 265 days in hospitals in Bangkok, experience for the both of us; first, Gary learned Fredericksburg and Richmond, culminating (after not to trust me. a six-month wait for a suitable donor) in an 18- hour operation followed by two months on life “Was that first mile too fast for you, John?” he support in the ICU and four more in the hospital. asked. Come to think about it, I do know something about marathon efforts. Good idea for changing the topic, Gary. ➔ 4 Transplant Chronicles, Vol. 5, No. 3 Gary was no longer just my running partner; I was to learn more about this gift in another he was “Gary the Buddhist Priest,” “Gary the hour. When I finally realized how far off the pace Psychologist” and “Gary the Promoter of Organ I had fallen by talking with the crowd and other Donation.” runners, I tried to pick up my pace, but an injury to my back and leg made it almost I arrived in New York several days before Gary. impossible for me to stride. I was in pain and By Friday, I was a wreck. I called him and was contemplating quitting. We were now in an complained that I was staying with non-runners: industrial section of Queens where the crowds My sister who was primarily responsible for my had thinned, but some New York City firemen transplant survival was simply no help when it had set up their own rest station. I struggled came to the marathon. over for some water and a word of encourage- ment. A fireman came out, looked at me and “No one understands me, Gary,” I told him, exclaimed, “God bless you!” asking for his help. I called to complain on the Friday before the Sunday race. He rushed into I guess my expression showed that I thought New York from Long Island and calmed me down his praise was a little excessive for running a by reassuring me that he and his friend Ruth, marathon. He explained, “I donated my brother’s another runner, would have dinner with me the liver, and seeing you makes it all worthwhile.” evening before the race. Ruth, who was very “God bless you,” I responded. excited about our run, made a sign for each of us to wear. Gary’s read, “I’m Gary. I’m running I couldn’t quit now. Gary led me across the with John. He’s running with someone else’s 59th Street Bridge, through Manhattan, into the liver.” Mine read, “I’m John. Recycle your life. Be Bronx, back to Manhattan, heading south an organ donor.” through Harlem and ending in Central Park. It was almost dark when Gary guided me across Waiting on Staten Island before dawn for the the finish line next to Tavern on the Green. My race to begin, I went through the usual pre-race time was an embarrassment, but at that jitters: “Can I eat? Gosh it’s cold. Should I have moment, I didn’t care. I had finished the worn tights instead of shorts? Where’s Gary?” marathon, and, I hope, opened a lot of eyes. Gary, the Buddhist Priest, arrived and told me to When I got back to Fredericksburg, I received a stay focused on the moment. note from Gary, which read, in part, “Thank you! Thanks for teaching me patience. Thanks for When we came off the Verrazano Narrows teaching me the true meaning of running. Bridge. I was overwhelmed with the crowds of Thanks for good conversations.” people. I got carried away, forgot about the race and ran up and down high-fiving everyone. I He thanked me for putting him through the used up a whole marathon’s worth of adrenaline unnecessarily long ordeal of running a marathon in the first five miles. Just when I decided to at my side? Our wonderful NYC Marathon relax and try to focus on the athletic challenge of Adventure really explains why I run and why I finishing the marathon, the adrenaline started race. What a chance to make a statement about pumping again. I soon regained my focus. living after transplantation! I remember the day that my meditation master in Asia told me, “You “John, that’s really awesome,” said a runner will understand Buddhism when you know that pulling up beside me. “I’m an OR nurse at NYU ‘The path exists, but not the man on the path.’” Hospital, and we do liver transplants. My patients are so scared. I’m going to tell them Surely, marathoners and transplant recipients about you tomorrow.” already understand this with every breath. John Robbins, after lapsing into a coma, Then I realized why I was running and what received an emergency liver transplant at the Gary and I were doing. He was helping me make Medical College of Virginia in February 1987. He a statement that I always hoped to make with has participated in three U.S. Transplant Games my running: You can always come back no and one World Transplant Games. John is a matter how bad the circumstances. Your return writer and book reviewer living in Fredericksburg, is only possible with the help and love of other Virginia. T people, and—in my case and the case of other C cadaveric organ recipients—by the gift of another person under tragic circumstances.

Transplant Chronicles, Vol. 5, No. 3 5 commentary Financial Incentives as a Means to Increase Organ Donation: A Summary by Teresa Shafer, RN, MSN, CPTC

The use of a financial incentive to increase maybe there should be some money in this organ donation has been widely discussed, process.” although serious consideration has been largely A few brave souls have challenged our reliance avoided by organ recovery and transplantation on the altruistic system, and have put financial professionals. The concept of donor families incentives on the table, meeting after meeting, receiving a death benefit as a means to increase article after article, year after year. Dr. Peters, organ donation is so politically incorrect to us who is also a clinical professor of surgery at the that most professionals working in the field of University of Florida, has almost single-handedly organ donation and transplantation do not give kept the discussion of this topic alive. In his it serious consideration. The reasons for our numerous papers and personal communications, aversion to the topic are fairly straightforward: Dr. Peters has always stressed the principles that 1. We are concerned about perception. We are seem to get lost when ethicists and devil’s advo- hypersensitive to criticism that we in some way cates discuss this topic—to save lives through benefit from others’ tragedy, that the system transplantation and avoid needless deaths that may not have done everything it could have occur every time a family denies consent for done to save the life of the severely injured. organ donation. (Who can blame us for this hypersensitivity after To summarize the content of some of Dr. seeing the way the television news show, “60 Peters’ writings:2,3,4 Minutes,” twisted the very legitimate, compassionate activity of recovering organs 1. Organ transplantation saves lives. Lives are from non-heartbeating donors?) lost when families, who have value systems different than those we base our system on, say 2. Money introduced to a system corrupts. no. Says Peters, “Our concerns must focus not 3. Our own values are tied to the concept of on some philosophic imperative such as altruism in such a deep way that we simply altruism, but on our collective responsibility for cannot conceive that any other value system maximizing life-saving organ recovery.”1 might be linked to donation. According to Tom 2. Helping families pay for the funeral or Peters, MD, FACS, director of the Jacksonville providing them with a death benefit is not Transplant Center in Jacksonville, Florida, “We coercive or unethical, nor does it establish an have established societal mores about the organ organ brokerage. Financial gain would not lead recovery process so that decisions regarding to tainted organs due to incomplete disclosure by organ donation are entirely altruistic. This family members of their loved one’s medical/ posture eliminates the possibility that consent social history in an attempt to realize the death for cadaveric organ recovery could be motivated benefit. It would not favor the rich; in fact, it by something of tangible value even though we would favor society’s poor and working class. know that some population groups harbor different thoughts or feelings about organ 3. A death benefit payment is endorsed by a donation.”1 large segment, possibly a majority segment of the American public.5 Because the U.S. system of donation is based on altruism and we have developed our system 4. Dr. Peters says, “...We in the organ trans- around altruism, it may seem awkward to open plantation field have wrongly adhered to certain the question about financial incentives now, as moral values of our own, and have coerced we approach the ceiling of consent rates and others at a time of personal tragedy to accept our look for new ways to raise the ceiling. It may views. We have held our philosophic values so sound like this: “Forget what we said earlier, ➔ 6 Transplant Chronicles, Vol. 5, No. 3 Financial Incentives... (commentary) Continued dear, in fact, that the very patients whom we Nine to 10 people die every day waiting for an place on the waiting list for transplantable organ. Although I have not taken a position on organs are dying because we continue to this issue, I would probably lean toward a key promote only these values.”1 statement by Dr. Peters: “All reasonable methods to save lives must be considered.” The most commonly proposed incentive is to pay a benefit to donor families for assistance References with funeral expenses. Dr. Peters has advocated 1. Peters, T.G. “Life or Death: The Issue of such a payment for years and makes sound and Payment in Cadaveric Organ Donation.” cogent arguments for adoption of a pilot study Journal of the American Medical Association, to assess the benefit’s impact on donation. (The 265:10, 1302-1305. National Kidney Foundation has facilitated discussion of this topic through its Contro- 2. Peters, T.G. “Financial Incentives in Organ versies in Organ Donation project.) Dr. Peters Donation: Current Issues.” Dialysis and proposes that a few OPOs incorporate into their Transplantation, 1992: 21:5, 270-274. operations an offer to families of potential 3. Peters, T.G. “Financial Incentives for Organ donors a $1,000 death benefit. From an Recovery: An Update.” Contemporary Dialysis operations standpoint, a pilot study of this type & Nephrology, 1994: August, 23-28. could easily be implemented in a controlled manner at the OPO level. The ethical issues 4. Batten, H.L., Prottas, J.M. “Kind Strangers: need to be put to rest first. The Families of Organ Donors.” Health Affairs, 1987: Summer: 35047. It may be that patients, donor families and other members of the public who are not seen 5. Kittur, D.S., Hoga, M.M., Thukral, V.K., et as having a conflict of interest on this issue al. “Incentives for Organ Donation?” Lancet, T need to partner with those in our industry such 1991: 338, 1443-1444. C as Dr. Peters, who are well-versed and passion- ate about this topic, to get the pilot study implemented or decide that it will not be done at this time.

Life by Douglas L. Hemsley

Life is waking up in the morning and hearing Life is watching the sun set and the stars the birds chirp and seeing the sun rise. come out. Life is playing with kids and seeing the joy in Life is precious and never to be taken for their eyes. granted. Life is experiencing new sights, sounds and Life is something I would not have without cultures. you. Life is starting a family and watching it grow. Thank you. Life is playing with your dogs in an open field. Life is hearing and seeing the joy and laughter Douglas L. Hemsley dedicates this poem to his in the world. brother, Donald, who donated a kidney to Douglas on March 9, 1994.

Transplant Chronicles, Vol. 5, No. 3 7 Exploring Laparoscopic Donation by Lucile Wrenshall, MD

During the past 30 years, thousands of people time needed before resuming full activity is two with renal failure have had their lives changed weeks shorter for donors undergoing the through the kindness of a relative or friend who laparoscopic versus the open method of kidney chose to donate a kidney. This procedure has removal. been successful because the risk of morbidity The recipient’s kidney function is not impaired (disease) or mortality (death) is very low. This low in kidneys removed laparoscopically, but the risk has been maintained throughout the years by major concern of transplant surgeons is whether careful donor selection, ensuring that the or not this procedure can be performed safely potential donor’s health is satisfactory and the otherwise. Removal of the kidney laparoscopically operative procedure is performed as safely as is a technically challenging operation. Control of possible. significant bleeding—if this were to occur—is more Although the risk to one’s health from donating difficult using the laparoscopic method, and may a kidney is low, kidney donation is not without require conversion to the open procedure. This consequences. The incision is fairly painful, and situation requires an operating room team skilled some people develop a weakness (hernia) in the in both the laparoscopic and open methods of body wall around the area of the incision, which kidney removal. may or may not require a second operation to be Although blood repaired. Also, the transfusions have been recovery time after required in people kidney donation may “The potential benefits of removing undergoing laparoscopic require the donor to kidney removal, miss four to six weeks of the kidney laparoscopically transfusions have been work, especially if the include less post-operative pain, a required (rarely) using job involves heavy the open approach as lifting. For these shorter hospital stay and an well. Whether or not the reasons, a method of laparoscopic approach removing the kidney, overall quicker recovery time.” will result in an known as laparoscopic increased likelihood of donor nephrectomy, was blood transfusion is developed to minimize difficult to tell, as the these side effects. number of kidneys removed this way is still Laparoscopic donor nephrectomy is a procedure relatively low. in which the kidney is removed from the donor If you are considering kidney donation via the through several small (approximately one-inch) laparoscopic method, you should make sure that incisions. The operation is performed with the aid the surgeon involved has been trained to perform of a camera, which is inserted through one of the this procedure. Ask how many kidneys he or she small incisions. Pencil-thin instruments are has removed via this method. If this procedure is inserted through the other incisions. At the end of relatively new within your institution of choice, the procedure, the kidney is removed through a ask your surgeon about the training he or she has five- to seven-inch incision that extends slightly had to enable him or her to perform this pro- above and slightly below the belly button. cedure safely. Your surgeon should have observed The potential benefits of removing the kidney and performed laparoscopic kidney removal with a laparoscopically, versus the traditional (“open”) surgeon highly skilled in this area, and also approach, include less post-operative pain, a rehearsed the procedure in an animal model. shorter hospital stay and an overall quicker Lucile Wrenshall, MD, practices medicine at the recovery time. One center that performs this University of Minnesota’s Department of Surgery. T operation routinely has reported that the use of C pain medication after the operation is less, hospital stays are shorter by three days and the

8 Transplant Chronicles, Vol. 5, No. 3 Transplant News Digest

From the editors of Transplant News Amendments Aimed at Bolstering Hospitals’ Organ and Tissue Donor Efforts Passed Unanimously by Senate by Jim Warren, editor and publisher

On September 9, the U.S. Senate unanimously meant to “express the sense of the Senate,” puts passed two amendments aimed at reinforcing pressure on hospitals to step up their efforts to hospitals’ efforts to increase organ and tissue offer organ donation to eligible families. donation. The measure calls for hospitals to: The first amendment, sponsored by Sen. Carl “(1) work with the designated organ procure- Levin (D-MI), is intended to ensure “that hospitals ment organization or other suitable agency to that have significant donor potential shall take assess donor potential and performance in their reasonable steps to assure a skilled and sensitive institutions; request for organ donation to eligible families.” The second amendment, sponsored by Levin (2) establish protocols for organ donation that and Sen. Richard Durbin (D-IL), calls for a incorporate best-demonstrated practices; national survey of hospitals’ current organ and (3) provide education to hospital staff to ensure tissue donor practices. The amendment states adequate skills related to organ and tissue that the secretary of Health and Human Services, donation; in consultation with the General Accounting Office (GAO), will be required to conduct a (4) establish teams of skilled staff to respond to “comprehensive study concerning efforts to potential organ donor situations, communicate improve organ donation at hospitals,” within 30 effectively with the patient’s surviving family and days of the enactment of S. 1061, the coordinate with the designated organ procure- appropriations for Departments of Labor, Health ment organization; and and Human Services, Education and related services for the 1998 fiscal year. The secretary will (5) monitor organ donation effectiveness be required to survey “at least five percent of the through quality assurance mechanisms.” hospitals participating in the organ donation program under the Public Health Service Act, to In introducing the amendments to the Senate, examine: Levin observed, “...these organ donor measures, including my negotiations over the past decade “(1) the differences in protocols for the with Department of Defense health officials to identification of potential organ donors; increase the number of military organ donors, (2) whether each hospital has a system in place complement efforts to maximize the numbers of for such identification of donors; and lives saved for those in need of organ or tissue transplants. I am encouraged that the two (3) protocols for outreach to the relatives of Department of Defense directives instituted a organ or tissue donors.” number of years ago will result in every member The secretary will be required to submit to of the military having an opportunity to indicate if appropriate Senate committees a report that they wish to become a donor.” includes recommendations on best hospital The directive states that unless there are practices: sufficient medical, legal or religious reasons, “(1) that result in the most efficient and “organ and tissue donation shall be discussed comprehensive identification of organ and tissue with next of kin in every death in a military donors; and medical treatment facility including uniformed services treatment facilities.” (2) for communicating with the relatives of potential organ donors.” Additionally, Levin said, the Department of Defense has begun recording organ donor The first amendment, which Levin said is information in the Defense Enrollment Eligibility

Transplant Chronicles, Vol. 5, No. 3 9 Reporting System (DEERS). “By April 1995, the T-cells, all of which are then recruited to attack DEERS reported a 30 percent positive response to the invader. In essence, co-stimulation causes the this directive,” Levin said, even though it “had not immune system to go to war. But if co-stimulation yet been fully implemented.” is blocked, said Harlan, the immune system holds off on its attack and actually learns to accept the invader as “self.” The researchers found that two Researchers Develop Therapy for Preventing proteins, called CTLA4-IG and 5C8, block the co- Rejection Without Use of Immunosuppressive stimulation activity of T-cells. Drugs In their study, Harlan and Kirk, assisted by U.S. Navy researchers have developed an transplant surgeon Stuart Knechtle of the experimental therapy that uses special proteins to University of Wisconsin, transplanted 12 rhesus prevent the rejection of mismatched transplanted monkeys with “very mismatched” kidneys. The organs without the need for immunosuppressive four monkeys that served as controls and received drugs. The treatment, which was tested in no anti-rejection therapy all rejected their monkeys, holds the promise of dramatically transplants within five to seven days. Four other expanding the supply of organs for transplantation monkeys received shots of either CTLA4-IG or and eliminating the risks and side effects of 5C8, and though organ rejection was delayed, it standard anti-rejection therapy. still occurred after about 100 days. Finally, two other monkeys received injections of both proteins According to Captain David M. Harlan of the for 14 days; they later rejected their transplants. Naval Medical Research Institute in Bethesda, But the two monkeys given the combination Maryland, a four-week series of injections of two injections periodically for 28 days showed no types of proteins appears to teach the immune signs of organ rejection for more than 150 days system not to reject transplanted organs. and were “alive and well,” Kirk said. The animals’ Additionally, the injections do not compromise the immune systems also appeared to be functioning body’s natural defenses against infection. normally, as evidenced by rapid healing of the “This puts us one step closer to being able to surgical incision, healthy appetite and weight offer transplant organ therapy without interfering gain. with the rest of the immune system,” said The transplant community is “excited by this Lieutenant Commander Allan Kirk, a member of work,” because it confirms in monkeys a the Navy research team. Kirk and Harlan technique already tested in laboratory rodents, published their findings in the August 5th issue of said John Fung, MD, chief of the transplant The Proceedings of the National Academy of program at the University of Pittsburgh Medical Sciences. Center. Fung cautioned, however, that it will take Currently, organ transplant recipients must take more years of research before the technique is immunosuppressive drugs, usually for the rest of ready for use in humans. “It is a breakthrough in their lives, to prevent their transplants from being our beginning to understand another approach to rejected. But because these medications totally immune suppression,” he said. “I would not have shut down the activity of the T-cells—the body’s predicted that this technique would be as potent front line of defense—they increase susceptibility as it apparently is.” to infections and cancer. Even with highly effective Harlan and Kirk agree that more extensive immunosuppressive drugs like cyclosporine and research in monkeys is needed. This would tacrolimus, donor organs must closely match the include studies assessing the long-term effects of tissue type of the recipient, or rejection will begin the new therapy compared to the effects of the immediately. All of these problems can be avoided, immunosuppressive drugs routinely used today. Harlan said, if the immune system is “re-educated” Evidence of a clear advantage for the experimental to accept the transplant. To accomplish this, one therapy would be needed, Fung said, before function of the T-cells must be turned off. doctors would feel confident enough to switch T-cells use a two-stage system to protect the from current immunosuppressive drugs, which body from foreign “invaders” such as bacteria, “give good results” despite some side effects. viruses or transplanted organs. The first stage Nonetheless, if the findings to date are recognizes the substance or organ as alien and not confirmed in subsequent animal and, eventually, part of the body. The second stage, called co- human clinical trials, the researchers predicted stimulation, prompts the increased production of their technique could be helping human

10 Transplant Chronicles, Vol. 5, No. 3 transplant patients within five years. In addition more organ donors. This legislation has allowed to organ transplantation, Harlan and Kirk’s us to refocus our efforts.” research may also provide help for various Jacobbi does not see any down side to the immune system disorders, ranging from hay fever legislation, nor does she expect a legal challenge, to potentially life-threatening illnesses such as which could only come from the passage of new multiple sclerosis and lupus. federal laws. “We’ve been called isolationists and accused of trying to go around the system, but I Liver Recipient Suffers from Donor’s Allergy don’t believe that’s true,” she told Transplant to Peanuts News. “We are participating in national sharing arrangements, and we haven’t dropped any A man who received a life-saving liver and sharing arrangements that we had prior to kidney transplant also got something he didn’t passage of the legislation. We just wanted to get ask for—an allergy to peanuts, according to a back to the business of recruiting more donors.” French physician who performed the transplant. The case occurred eight years ago and was LOPA continues to participate in the national reported in the New England Journal of Medicine. sharing arrangement that ensures perfect kidney matches whenever possible. And several months The organs came from a 22-year-old man who ago, the organization joined a pilot study knew he was allergic to peanuts, ate them by requiring the sharing of livers for Status 1 mistake when he had Chinese food with satay patients (those in immediate need of transplant) sauce, fell into a coma and died. Physicians by all five states in the UNOS-designated transplanted his liver and right kidney to a 35- southern region. year-old man, and his pancreas and left kidney to a 27-year-old woman. Neither was told of the “Increasing the donor population, not organ donor’s cause of death. allocation, has to be our first priority,” Jacobbi stated. “Right now we have a very small pie. What Three months later, the recipient of the liver we need is a much larger pie, and the only way and kidney began suffering from a skin rash, and we can get that is by increasing the number of had difficulty breathing after eating peanuts. The organ donors. And the only way we can physicians speculated the man had developed the accomplish that is by directing our efforts on this allergy to peanuts because blood cells primed to single issue.” recognize peanuts as foreign were passed along from his transplanted liver. From 1995 to 1996, the number of patients on Louisiana transplant waiting lists increased The man was told to avoid peanuts and is still almost 20 percent. Last year, 65 percent of the alive today. The woman who received the state’s transplants were performed using organs pancreas and the other kidney from the donor from Louisiana donors. Nationally, about 60 showed no ill effects after eating peanuts while percent of organs recovered locally are under close supervision. transplanted locally. OPOs in some other states are considering Louisiana Legislators Law: Recovered proposing legislation similar to Louisiana’s, or are Organs Must Be Offered First to Patients looking to establish variations within the UNOS on State’s List authority that would allow them to do what LOPA has done, Jacobbi said. On June 11, Louisiana legislators passed a law mandating that all organs recovered in the state will first be offered to patients listed on state University of Chicago to Begin Pilot Project transplant waiting lists, unless the Louisiana on “Kidney Swapping” to Increase Living Organ Procurement Agency (LOPA) enters into a Donation sharing arrangement that is beneficial for patients listed in Louisiana. Last year in the United States, nearly 2,000 people died while waiting for a kidney transplant. Years of fruitless national discussions regarding In an effort to increase the supply of kidneys, the organ allocation were the impetus for the new University of Chicago Medical Center has law, according to Louise Jacobbi, LOPA executive launched a pilot project that allows two people director. LOPA and the state’s transplant centers, who need kidney transplants and have willing but she said, “felt our time and resources would be incompatible donors to exchange donor kidneys. better spent on activities directed at recruiting Transplant Chronicles, Vol. 5, No. 3 11 Because of the shortage of kidneys, more and As is always the case with living organ more living donors have come forward to offer donation, donors will be given ample opportunity organs to friends and family members. Unfortun- to halt the process, if they change their minds. ately, between 10 percent and 20 percent of While the overwhelming majority of people who kidney patients are incompatible with their volunteer to donate a kidney complete the process, potential living donors, based on ABO blood type it is not unusual for someone to back out. Fears and human leukocyte antigen (HLA) profile, and about the surgery typically are the reason for the must be put on the list for a cadaveric organ. Not decision change, and these worries are not only does this increase waiting time, it also unjustified. Surgery is harder on the donors, and reduces the odds of the transplant being a the recovery is longer, meaning more time away success. While 73 percent of patients who receive from work. Fortunately, complications are rare, kidneys from unrelated donors survive five years, the mortality rate is just three deaths per 10,000 almost the same percentage (69 percent) who donors and there is no increased risk of survive after receiving organs from a related but cardiovascular or renal disease following donation. not HLA-identical donors experience success. Because of the organ shortage crisis, many in The pilot program, described in the June 12th the transplant community believe that any ethical issue of The New England Journal of Medicine, means to increase organ donation should be given follows a recommendation made a decade ago by a try. If the pilot study at the University of Chicago transplant pioneer Felix J. Rapaport, MD, of proves successful (similar programs are planned University Hospital at Stony Brook, New York, for at other medical centers), it might lead to the an exchange of kidneys among pairs of volunteer creation of a large, nationwide kidney exchange donors and recipients. There are two chief goals of program in which “essentially every dialysis the swap: make more donor kidneys available and patient [who is eligible for transplantation] get the closest possible biological match for every potentially could receive a living donor kidney,” patient, thereby increasing the likelihood that the Tom Peters, MD, FACS, director of the transplant will be a long-term success. Jacksonville (Florida) Transplant Center, told Transplant News. “This would increase the overall The University of Chicago project will start with success of kidney transplantation, since fewer a small number of pairs and limit the surgery to cadaveric transplants would be done, and, as a one transplant center. If the results are promising, result, reduce the incidence of re-transplantation.” other major medical centers in large cities will get involved, but the program will remain tightly For his part, Dr. Rapaport, of Stony Brook, is controlled and localized to prevent abuse. Donor- delighted that others have picked up on his idea recipient pairs will never meet, and all information and are putting it to the test. “Thousands regarding who donates and who receives kidneys worldwide are dying every day because there will be strictly confidential. In addition, social aren’t enough organs. Paired organs is one T workers will spend considerable time interviewing possibility [to remedy this].” C the pairs to make certain that no one is gaining financially from the procedure.

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For more information, call Marla Behler at (800) 622-9010.

12 Transplant Chronicles, Vol. 5, No. 3 Guided Imagery: A Proven Technique to Decrease Stress and Enhance Coping Skills by Diane L. Tusek, RN, BSN R esearch indicates that people who suffer ability to tap into a very powerful resource that is from stress often feel a loss of control, isolation, available at all times, but is often forgotten—the fear of the unknown and increased anxiety. mind. Increased anxiety may increase pain perception Guided imagery tapes may be of assistance if and be detrimental to the immune system. you are suffering or recovering from: The use of guided imagery may help • anxiety and stress counteract these negative effects. This powerful • asthma and respiratory disorders audio tool is designed to help people overcome • cardiac disorders anxiety, anger, pain and insomnia often • cancer (and its treatments) associated with a condition that requires medical • diabetes or surgical intervention, such as transplantation. • GI disorders The imagery “story” includes a soothing • headaches musical background, which enables listeners to • infertility go to a “special place” in their imagination, where • insomnia they feel safe, secure, protected and peaceful. • medical or surgical procedures The story encourages them to confront and work • pain through any feelings of fear, anger, anxiety and • transplantation. negativity; it can be a much-needed mental escape during a traumatic and stressful time in Diane L. Tusek, RN, BSN, is the director of the someone’s life. The Guided Imagery Program at The Cleveland Clinic Foundation in Cleveland, Ohio. For more For some people, guided imagery helps to slow information about guided imagery, call Diane at down the racing mind and enhances coping (216) 944-9292. T strategies and sleep. Some people who listen to C guided imagery tapes even report that the tool gives them motivation and control over their lives Joy of Life once again. In addition to the users’ testaments, multiple clinical studies have shown that by Jenny Smallin (inspired by Nancy Fox) patients who use guided imagery tapes demon- strate a significant decrease in pre- and post- Boundless joy! Its smiles high! operative anxiety, pain, narcotic consumption, Dawn to dusk across the sky. side effects and length of hospital stay. Research The highest rainbow, bright and bold. also indicates that guided imagery can stimulate Float to the top, slide down to gold. the immune system and access a person’s emotional, mental and spiritual resources. I thought some day that it would stop, This heap of joy would have a top. The use of guided imagery is not limited to “Aw, no,” they said, my transplant friends. medical patients; it is routinely used by “It never stops! It never ends!” numerous institutions across the country to alleviate pain, reduce stress and help people cope The joy of life is set ablaze, for whatever reason. Guided imagery’s well- When one is left with so few days. documented effect on a person’s self-confidence, In answer to my SOS, dignity and satisfaction has been positive. One Thank God my donor’s mom said yes. reason it does this is it allows people to take an active role in their own care. Like being there the day you’re born, Guided imagery is not an alternative to A frosty night or sunny morn. medical or surgical treatment; it is an That’s baby joy with life brand new, inexpensive and powerful supplementary tool To me that’s what transplantation can do! that can help people cope and achieve a sense of Jenny Smallin is a kidney recipient who lives in control and peace in their life. It provides the Stockton, California.

Transplant Chronicles, Vol. 5, No. 3 13 Medical Beat What You Should Know About Post-Transplant Lymphoproliferative Disease by Ira D. Davis, MD As a recipient of a solid organ transplant, you particularly high in children undergoing organ are at an increased risk for infections and cancer transplantation in the first decade of life since because of the effects of anti-rejection drugs on they are less likely to have been exposed to EBV the immune system. These drugs weaken the prior to receiving an organ. The use of special immune system’s ability to defend against antibodies, such as OKT-3, for treating severe serious infections and search the body for rejection is believed to be connected to an abnormal cancerous or pre-cancerous cells. This increased risk of acquiring PTLD. The prescription is particularly important because of the Epstein- of high-dose tacrolimus in combination with OKT- Barr virus (EBV). EBV is associated with a 3 in patients with a primary EBV infection in the serious and potentially life-threatening condition post-transplant period also appears to be referred to as post-transplant lymphoproliferative correlated to the occurrence of PTLD. disease (PTLD). PTLD can be treated by reducing the intake of PTLD is a disorder characterized by the anti-rejection medications as much as the patient abnormal growth of white blood cells known as can tolerate. For kidney and liver transplant lymphocytes, and is believed to be closely linked recipients, this usually means discontinuing to the presence of an EBV infection in the combinations of cyclosporine, tacrolimus, transplant recipient. PTLD may present itself as azathioprine or mycophenolate mofetil, and an infectious mononucleosis-like EBV illness reducing the dosage of prednisone. For heart or with such symptoms as sore throat, fever, heart-lung recipients, reduction of these swelling of the lymph nodes and enlargement of medications is recommended. Approximately, 50 the liver and spleen. Although people who have a percent of PTLD cases respond to a reduction in normal immune system will likely suffer a benign anti-rejection medications. Radiation therapy or infection lasting three to seven days, this surgical removal may be necessary for localized infection may be prolonged in transplant diseases, while chemotherapy agents may be patients, and is frequently associated with a low required for persistent cases. Anti-viral white-blood-cell count. PTLD may also manifest chemotherapy with ganciclovir or acyclovir has itself as an enlarged lymph node anywhere in the also been used. body. Finally, this disease may occur in the In view of the variable response to these transplanted organ, gastrointestinal tract or the treatments, preventive strategies for PTLD are of brain. great importance. Risk factors for developing Risk factors for PTLD are primarily related to PTLD should be minimized or avoided. Specific- the type of organ transplant, the presence of ally, caution should be used in prescribing protective antibodies against EBV and the type aggressive anti-rejection medications in patients and intensity of anti-rejection medications used who have never had a previous EBV infection. A for treatment. The incidence of PTLD, which is promising preventive method that is currently highest in the first post-transplant year, is being studied is the use of an EBV vaccination greatest among heart and heart-lung transplant that causes the formation of protective antibodies recipients. The risk is five to nine percent, against EBV in patients without a history of EBV compared with two to four percent for liver infection prior to transplantation. The efficacy of recipients and one percent for kidney recipients. preventing PTLD with anti-viral drugs is unknown. Patients who develop their initial EBV infection (known as a “primary EBV infection”) in the post- Suggested Reading: transplant period are at risk for acquiring PTLD. This is due to the fact that these patients do not Basgoz, N., and Preiksaitis, J.K. “Post- have antibodies to protect themselves from EBV transplant Lymphoproliferative Disorder.” at the time of transplantation. The risk of Infectious Disease Clinics of North America. T acquiring primary EBV and, eventually, PTLD, is 9: 901-923, 1995. C

14 Transplant Chronicles, Vol. 5, No. 3 Join or Start a Support Group in Your Community by Sally Metzger

S upport groups for organ transplant The purpose of the group is to provide support, recipients, family members and patients who are education and information about organ waiting on the list can be an asset to your whole transplantation to recipients, family members, community. They can provide encouragement for people waiting on the list and others interested, those going through the transplantation process, including the hospital staff and the general and offer an educational gift to the community at public. We are also interested in increasing large. community awareness of organ donation and transplantation. Many recipients and families experience their first support group meeting in the medical center Usually, a speaker is invited to present before or after the transplant surgery. Generally, information during part of the meeting. Topics there is a social worker who coordinates it. The might include nutrition, medication, organ group addresses immediate concerns and shares donation, Medicare, Social Security disability, the stories, and people learn from use of humor in recovery, each other’s experiences and ask legislation, spirituality, the questions. Hopefully, they make Transplant Games and new friends, too. understanding lab reports. Speakers are found through the The transplant recipient then transplant centers, the goes home to his or her community and local medical community, which may not be facilities. close to the transplant center. If it isn’t close, courage and cre- There are many opportunities ativity to start your own group is for friendship and personal required, to receive the support growth, not to mention a chance you need. When I returned to my to give back to the community. town of 50,000, a transplant Many of the group members are support group did not exist. For now trained to speak about organ all I knew, I was the only person donation, and are available to in town with a transplant! community service organizations Luckily, after I was home awhile, and the media. I received a phone call from Support groups can provide a another liver transplant recipient safe and nurturing environment in town who had heard of me. for growth and acceptance of Together, we became facilitators transplantation among families of our community’s organ and communities. Reaching out to transplant support group. Sally shows off the silver medal she won in the U.S. Transplant Games in others is healing in itself. How do you initiate a support Concerns and feelings are group? Deciding on a date, time 1996. Her children—Will, Jan and shared and gratitude is abundant. and location should be your first Robert—are obviously proud of their The support group offers a set of priorities. Then, publicity is mom. network of people to help, listen important. We contacted the and provide encouragement. nearest transplant center (150 miles away), state associations involved with transplantation and Sally Metzger received a liver transplant in local medical specialists who might be working March 1995. She is currently recovering from major with recipients. They were very helpful by sending surgery unrelated to her transplant. Transplant T out fliers to prospective members of the group. Chronicles wishes her a speedy recovery. C Community newspapers also publicized the meetings. Our local hospital provided a conference room for the monthly meeting.

Transplant Chronicles, Vol. 5, No. 3 15 keeping fit Strength Builders for the Mind and Body by Vanessa Underwood, BS, AFAA, ACE oga, Alexander and Pilates are techniques ✎ THE ALEXANDER TECHNIQUE usedY to build a balance of strength for the mind and body, while taking pressure off the muscles This is a hands-on technique developed to and joints. Whether you are hiking, skiing, teach people how to move more efficiently, freely swimming or running, you can complement your and properly. This may sound simple and silly, exercise with mind-body disciplines. These but many of us experience aches and pains unconventional methods of exercise, once believed simply from poor posture, which can cause an to be alternative, are now quite mainstream. They array of problems, resulting in many different are believed to help restore equilibrium to the aches and pains. Additionally, after experiencing body. The idea is that the body has to work as a an illness or surgery, many of us do not move unit—mind and body. properly, causing additional problems of weakness and pain. The Alexander instructor Mind-body workouts help us become more will use hands to guide a student through knowledgeable of what our body is doing and simple, everyday movements, like standing, feeling. Body awareness not only helps improve sitting and walking. The instructor will identify concentration in fitness and sports, but it actually and correct habits that are blocking easy helps strengthen and improve our physical and movement, and may focus on lifestyle-specific emotional self. If you are involved in a particular problems, like sitting long hours, standing or sport, a mind-body discipline will give your lifting. muscles time to rest, while you continue to benefit from a softer workout. If you are not involved in ✎ ALEXANDER FOR SWIMMERS another activity this may be just for you. This technique focuses on the importance of ✎ YOGA lengthening and unfolding the torso, as a long, smooth body line Yoga originated more than 26,000 years ago, is essential to swimming. and was designed to bring together the physical, Emphasizing proper form will emotional and spiritual aspects of being. Hatha increase buoyancy, reduce drag yoga the most popular of many varieties, is made and decrease the number of up of hundreds of positions, most of which strokes used, therefore reducing strengthen one muscle group while stretching the energy expenditure. Many swimmers have a opposing muscle group. tendency to pull their shoulders toward their Yoga stresses proper alignment, precise head, which constricts their breathing; this movement and proper breathing. As you inhale technique will allow them to break that habit and and exhale, you are able to relax your muscles breathe more efficiently. fully. It is this balance of effort and surrender (the ✎ PILATES strengthening and stretching, the inhaling and exhaling) that allows you to relax, improve athletic The concept is that the abdominal and pelvic performance and enjoy an overall feeling of well- muscles are the power center of the body. A great being. deal of attention is paid to strengthening and ✎ stabilizing the torso. Pilates, which was originally YOGA AND RUNNING used for injury rehabilitation, teaches you how to If you are a runner, yoga can condition muscles in concert with one another. help to increase your flexibility, The exercises are similar to calisthenics, and are safeguard against injuries and help repeated three to 10 times each. The movements strengthen the muscles of the are done slowly and deliberately, engaging upper body. Proper breathing can abdominal muscles in one way or another. alleviate side-stitch and will teach you how to channel your breathing for relaxation and revitalization.

16 Transplant Chronicles, Vol. 5, No. 3 ✎ PILATES FOR SKIERS leg to another, the bending of the knees, the AND SKATERS tucking of the hips and the arm movements are in sync with the legs. As with yoga, breathing is an As a skater or skier, your legs are integral part of tai chi. There are two forms—a the first muscles you think about, short version of 37 moves, taking about 27 but much of the movement actually minutes, and a longer one consisting of 100 takes place in your upper body. By moves. Tai chi is a popular discipline, appealing to making the torso stronger you will children, seniors and all age groups in between. improve posture and muscular balance, both of which affect the ✎ TAI CHI FOR HIKERS side-to-side moves in skiing and skating. Pilates exercise is designed to improve and enhance Leg strength and good footwork are essential flexibility, allowing the trunk to rotate and move to tai chi. One of the first things you learn when fluidly while reducing the risk of back injury. studying tai chi is foot placement and how to Pilates also works the deeper muscles, taking the balance on one leg. On the hiking trail, this can burden off the external muscles and giving you make a world of difference. There is a variety of more power. This technique teaches you to use different terrains, and the fine foot work you your entire body. develop in tai chi can help you move your way ✎ around the rocks, gravel, mud and slopes. Tai chi TAI CHI creates an awareness of the body’s relationship to This ancient martial art is practiced by millions space. While hiking, you are constantly changing of people throughout the world. It serves mainly your relationship to the space you are in. to improve balance and coordination and to By employing any of these disciplines, you will strengthen the muscles. This technique consists of not only enjoy the benefits of physically and slow, deliberate, sequential motions, originally physiologically improving your body, but you will meant to be movements of attack known as find a peacefulness and strength from within—a “forms.” The moves start with the feet and rise strength that will allow you to see life more clearly up through the knees, torso, shoulders and out and overcome daily challenges with a greater ease through the hands. Each exercise is performed T and understanding. C with control. The transfer of the weight from one

Organ Transplant Recipients Hold Vigil Valley Transplant Program, in many of the same to Draw Attention to Minorities minority communities where health problems are Awaiting Transplants prevalent, there are a number of misconceptions about donation, as well as psycho-social, cultural Organ transplant recipients, patients awaiting and institutional factors that deter people from transplants and health care professionals held a becoming donors even when a family member is candlelight vigil in Philadelphia in August to draw in need. attention to the plight of minorities awaiting organ transplants. About 80 people attended the vigil, which commemorated National Minority Donor Awareness Day. The NKF was a sponsoring organization for this event. The special day was first designated last year by President Clinton and the U.S. Congress, and was organized by the Washington, DC-based Minority Organ and Tissue Transplant Education Program to increase the number of minority donors and reduce the number of people whose health status necessitates transplantation. Statistics demonstrate the need for such a program. Of the 53,500 patients currently awaiting a transplant in the U.S., nearly half are Reverend Thomas A. Jackmon Sr., assistant pastor, St. minorities. In addition, according to the Delaware Daniels United Methodist Church, spoke at the vigil.

Transplant Chronicles, Vol. 5, No. 3 17 UNOS’ Temporary Liver Policy and What it Means to Those on the Waiting List by R. Patrick Wood, MD, FACS

On July 30, 1997, UNOS introduced a advisory committee to the transplant centers temporary liver allocation policy, which changes within the region. the way livers are given to people on the waiting Arguments for the Present Status-1 Change list. The new policy arose from controversies Patients who have acute liver disease do very surrounding liver allocation in the United States— well if they are promptly transplanted; in fact, the controversies that have raged for many years. survival rate of these patients is greater than 90 percent. Virtually all of these patients will die if Public hearings addressing the liver allocation they do not receive a transplant. Patients with policy were held in Washington this past winter, acute fulminant hepatic failure should not have and, as of this writing, the secretary of health and to compete against patients with chronic liver human services had not issued a recommendation disease who grow sicker, because chronic based on the hearings. Despite this, UNOS has patients have a much lower survival rate if continued to work through its committee transplanted while they are in critical condition. structure—primarily the Liver and Intestinal This change may allow for regional sharing of Subcommittee and the Organ Allocation livers among this group of patients. Most Committee—to develop the interim liver allocation transplant surgeons seem to be willing to share policy that was issued in July. livers for this select group of patients if Status-1 appropriate safeguards can be enforced. If For adult patients (those older than 18 years of successful, regional sharing may be possible on a age), there is a four-tiered status system. Under national basis. the liver allocation policy, Status-1 patients are Arguments Against the Present Status-1 those who have acute liver failure and a life Change expectancy of less than seven days. Specifically, This change is unfair to patients with chronic Status-1 includes patients who have acute liver disease who grow sicker while on the fulminant hepatic failure (defined as severe liver transplant waiting list. In most major transplant failure in a person who has no known liver centers, even very ill patients with chronic liver disease, occurring within eight weeks of the first disease can be transplanted with a high success symptoms of liver problems), primary non- rate. Additionally, since patients with acute function of a transplanted liver within seven days fulminant hepatic failure make up less than two of transplantation, acute hepatic arterial hepatic percent of the waiting list, this change is rather thrombosis in the transplanted liver within seven insignificant. Finally, some centers feel that livers days of transplantation, or acute decompensated should be transplanted into patients with the Wilson’s Disease (an inborn defect of copper greatest need, that is, patients with chronic liver metabolism in which copper may be deposited in disease whose condition quickly deteriorates, the liver). For patients to be listed as Status-1, the regardless of the rate of success in these transplant center must complete a Liver Status-1 particular patients. Justification Form and send it to UNOS within 24 Status-2 hours of listing. If no such form is received by There are two divisions of the Status-2 UNOS within 24 hours, the patient will designation. Status 2-A is assigned to patients automatically be downgraded to a Status 2-B (see who are in the hospital Intensive Care Unit due next page). Patients are automatically downgraded to the worsening of chronic liver disease—if they to Status 2-B after seven days if their Status-1 have a life expectancy of less than seven days Justification Form is not renewed by their without a liver transplant. For these patients, a transplant physician. In addition to the form, all Status-2-A Justification Form must be patients listed as Status-1 are reviewed by a received by UNOS within 24 hours of the regional review committee within 24 hours of patient’s original listing as Status-2-A. If a listing. This review committee acts only as an Status-2-A Justification Form is not received ➔ 18 Transplant Chronicles, Vol. 5, No. 3 by UNOS within 24 hours, the candidate is re- is discussion on a national level that the 2-B assigned to Status-2-B (see below). A re-listing category may evolve into a system in which a request to continue Status-2-A listing for the patient’s candidacy for this status would be same patient waiting on a transplant list beyond determined based on medical criteria that can 14 days of accumulated time results in an on-site be reproduced, rather than on the patient’s review of all local Status-2-A and 2-B liver hospitalization. patients by UNOS. All patients listed as Status-2- Arguments Against the Status-2-B Policy A are reviewed by the appropriate regional review Many patients who are treated as outpatients in committee. the modern era are as sick, or sicker, than Arguments for the Status-2-A Policy patients in the hospital. The 2-B category should Now that Status-1 includes only patients with somehow be based on true medical indications for acute fulminant hepatic failure, patients with transplantation, as opposed to a patient’s chronic liver disease need a safety net if they hospitalization. deteriorate acutely. Status-2A gives them priority Status-3 over stable Status-2 patients. Status-2-A patients Status-3 patients require continuous medical can be successfully transplanted with a high care, but not an acute hospital bed. Currently, no degree of success if they are given appropriate justification forms must be completed to list the priority on the waiting list. Hopefully, the Status- patient as Status-3. 2-A category will be reserved for chronic liver disease patients whose life expectancy with a Arguments for the Status-3 Policy transplant is as good as patients with acute Status-3 patients are the lowest priority of the fulminant hepatic failure. The general consensus allocation system because they are medically is that relatively few patients should be entered stable, and can wait a longer period of time for a into this category. transplant. In fact the designation indicates that patients should be able to wait up to one year for Arguments Against the Status-2-A Policy a transplant. This designation is almost the same as the old Arguments Against the Status-3 Policy liver allocation system, with some minimal Physical location should not determine who advantage given to patients with fulminant gets a liver transplant. As noted above, most hepatic failure. Still, most Status-2-A patients transplant professionals believe that livers should who receive transplants suffer from chronic liver be given to patients based on well-defined and disease and are growing sicker quickly. This reproducible criteria. There is discussion on a enables patients whose survival rates are lower national level to require that all patients in the than less critically ill patients to receive a liver. Status-3 category meet certain medical indications to be listed. UNOS committees are presently Status-2-B writing such criteria and have labeled them A Status-2-B patient’s medical condition should “Standard Listing Criteria.” Hopefully, the Status- require continuous hospitalization. Such a 3 designation will eventually indicate that such patient is required to be continuously hospitalized patients require transplantation at some point, in an acute care bed for at least five consecutive but are not in urgent need. days. If not, the patient must be in the intensive care unit and not meet the criteria to be a Status- The above holds only for patients greater 2-A. A completed liver Status-2-B Justification than 18 years of age. For pediatric patients, the Form must be received by UNOS within one status system will remain intact. Status-1 working day of the patient’s listing as Status-2-B. pediatric patients are confined to the Intensive If a completed liver Status-2-B Justification Form Care Unit, and have a life expectancy of less is not received by UNOS within one working day, than seven days. Status-2 pediatric patients are the Status-2-B will be re-assigned to the waiting confined to an acute hospital bed for at least five list to a Status-3. consecutive days, or are in the Pediatric Intensive Care Unit, but do not meet the criteria for Arguments for the Status-2-B Policy Status-1. Status-3 pediatric patients are at home The 2-B designation is the same as the present while awaiting transplantation. T Status-2 designation for all chronic liver disease C patients who are not Status-1 candidates. There

Transplant Chronicles, Vol. 5, No. 3 19 Team USA in Full Force for World Games

More than 2,200 participants from 58 countries traveled from around the world to Sydney, Australia for the XI World Transplant Games, from September 25 to October 5.

Approximately 1,000 participants competed in some of the 12 sports, many of which were held at Homebush Bay, the site of the 2000 Olympics. Joining the athletes were friends, family and supporters, who participated in many of the social events of the Games.

Taking a lesson from the U.S. Transplant Members of Team USA show their patriotism during the Opening Games, the event marked the first time the Ceremonies. The Sydney Opera House is in the background. World Games featured the involvement of donor dedication to the promotion of organ donor families, who participated in the Opening awareness. There were many valiant efforts by Ceremonies, the Closing Ceremonies and in our athletes—young and old—and they were many of the medal presentations during the five wonderfully supported by our family and friends. days of competition. Donor families participated This group clearly showed that we continue to for Team USA, also a World Games first. lead the world in our commitment to programs in transplant athletics.” As in past performances, Team USA again displayed its athletic talents, with medals in The sports in which U.S. athletes particularly almost every event of the Games. Although the excelled included golf (four medals), ten-pin final medal count is not yet complete, it appears bowling (13 medals) and swimming (33 medals). that Team USA finished third in the medal race Gary Pontious, of Tulsa, Oklahoma (gold in behind Great Britain and Australia. men’s scratch golf and men’s bowling); Trish Zobel, of Haddon Heights, New Jersey (four Team USA was the largest non-hosting team golds, one silver and one bronze); and Ray ever to compete in the World Games, with 150 Velasco, of Alameda, California (four golds and athletes, the maximum allowed. Colleen Horan, one bronze) were among the outstanding team manager, said “I was proud that our team T individuals on Team USA. C was the largest ever, which demonstrated our

The National Kidney Foundation recognizes the significant contributions made by Sandoz Transplant, a division of 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; NKF/Sandoz Research Fellowship; and the NKF Annual Meeting.

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