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Transplant Chronicles

Volume 8, Number 2 A publication for transplant recipients of all organs and their families, Fall 2000 published by the National Foundation, Inc. Giving and Getting Gifts of By Adela T. Casas, MD W hen Astrid Deleon was dying child, since no other just two-and-a-half months old was immediately she was hospitalized with renal available. They did not failure caused by a defect in her hesitate to say yes. Unfortun- . Her diagnoses was ately, the child who received oxalosis, a hereditary disease Astrid’s recovered organ did that causes the body to deposit not survive. But the Deleon oxalate into the kidneys and family’s gift should not go causes them to fail. Astrid unnoticed. needed a kidney and liver transplant right away. Despite Astrid received a kidney/ the presence of oxalosis, liver transplant and did very Astrid’s liver was otherwise well. She was the youngest Portrait of generosity: Ivan and functioning normally. A kidney/liver transplant Astrid Deleon and their Mom transplant would prevent recipient ever. After Astrid’s Sonia Martinez. further damage to her kidneys. transplant, her brother Ivan was rushed to the emergency match. Just as Ivan was room. He was unable to void scheduled for his transplant, a “They did not hesitate and had severe back pain. Ivan beautiful three-and-a-half- week-old baby was diagnosed to say yes.” was also diagnosed with oxalosis as well as kidney with a coagulation defect that stones. Like Astrid, Ivan’s liver clotted the vessels to his liver At the same time, another maintained normal and left him in acute liver child in the ICU was dying of despite having oxalosis. failure. By chance, the baby, acute liver failure. The Deleon Matthew, has the same blood family was asked if the trans- Once Astrid recovered and type as Ivan. plant staff could recover went home, the Deleon’s Once again, the Deleons were Astrid’s liver after she received doctors began to discuss a approached about donating a her kidney/liver transplant. The transplant for Ivan, who needed child’s liver after transplant and kidney would be used as a only a liver. His mother was once again they agreed temporary transplant for the tested and was found to be a Continued on page 4

© Copyright 2000 transAction! National Kidney Foundation Transplant Chronicles is a COUNCIL Program of the National Kidney Foundation, Inc., ISSN# 1524-7635 supported by Pharmaceuticals Corporation National Kidney Foundation ✍ editor’s desk Transplant Chronicles

Summer has ended and if you’re Transplant Chronicles is published by the National Kidney Foundation, Inc. like most people, you’re probably Opinions expressed in this publication do not necessarily represent the trying to get your life back on position of the National Kidney Foundation, Inc. schedule. This can be very difficult Editor-in-Chief: Beverly Kirkpatrick, MSW, LSW at any time, but especially after the A.I.duPont Hospital for Children summer months. Wilmington, Delaware Editors: Most Americans lead hectic, busy Ira D. Davis, MD Jim Warren, MS . We rarely take time for Rainbow Babies Children’s Transplant News Hospital Fresno, ourselves. Add being a transplant recipient to the mix, Cleveland, Laurel Williams Todd, RN, MSN where you must adhere to medications, appointments Maurie Ferriter, BS University of MC NKF of Organ Transplant and eating right (among other things) and suddenly the Lakeland, Michigan Omaha, Nebraska task of living seems impossible. We all need to sit back Teresa Shafer, RN, MSN, CPTC for a moment and think about how we spend our time Life Gift Center (see time management strategies and ideas in "Don't Ft. Worth, Texas Charlie Thomas, CISW, ACSW Do Lunch," on page 3). Samaritan Transplant Services Transplant Games Photos: Phoenix, Arizona Jay LaPrete: page 3, If you haven’t set some time aside, even 30 minutes, Vanessa Underwood, BS, page 10, A,B,D then you need to take a good hard look at how you can AFAA, ACE page 11, F,G,H,J,K Fitness Trainer/Wellness page 17,C work yourself into your schedule. You are important, Consultant Jeff LaPrete: page 10, C, E so take the time for YOU!! Plaistow, page 11, I Hope you enjoy this issue of Chronicles. We've added Editorial Office: National Kidney Foundation, Inc. pictures of the 2000 U.S. Transplant Games 30 E. 33rd Street, , NY 10016 throughout our pages. (800) 622-9010/(212) 889-2210 http://www.kidney.org We would love to hear about any ideas you have for Executive Editor: Editorial Director: future issues as our staff is planning the upcoming Diane Goetz Gigi Politoski T Managing Editor: Production Manager: year of Chronicles. C Sara Kosowsky Marilyn Lara Beverly Kirkpatrick Design Director: Editorial Manager: for the Editorial Board Oumaya✏ Abi-Saab Catherine Paykin

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2 Transplant Chronicles, Vol. 8, No. 2 keeping fit Don’t Do Lunch by Vanessa A. Underwood, BS, AFAA, ACE

R aise your hand if you do not exercise that we must because you do not have time. Reluctant hands sort through go up in three-quarters of the room, as though all the engage- they will be punished if they admit to this. The ments, com- truth of the matter is that most people don’t mitments, believe they have the time. You have to make the activities and time to exercise. plans and identify what is Lack of time is the number one barrier to exer- truly valuable cise. In a sense, this is true because we cannot add to us. You can more hours to the day. The key here is how we begin making choose to spend those hours. We must choose how the right we best manage our time. Whether you realize it or choices now. Buzz Hodge gives it his all! not, you are making choices every day. You simply These choices have to decide what is most important to you. YOU will have an effect on your long-term behavior. must control your time or IT will control you. Begin by searching and Think about the number of recovering some hidden minutes you spend talking on the moments within your day. If phone, watching television, or you have to go to the grocery entertaining guests. In my home, store for a couple of items and it is an unspoken rule that when you live close enough, take a I am working out, I am not to be walk. Maybe you have a doctor’s disturbed. You must take this appointment in the morning control, too. Otherwise, the and you need to drop off the important things in your life will dog somewhere later in the day. not get the attention they deserve. If both places are in the same Simply by not answering the direction, you can try to sched- phone you could save enough ule them closer together to free time to get a half an hour of Gold, Bronze, Silver – Winners! up some time at the end of the exercise each day. Unless it is an day. If you can find those little emergency, the calls can wait. We have become pockets of time you may be able to go for a slaves to technology. Instead of saying I can’t find 20-minute walk or get in some weight training. In time, say I will make the time. just 20 minutes you can exercise three body parts and get some cardiovascular in there, too. Once you Begin slowly and do not overwhelm yourself. have decided that this is DON’T DO LUNCH what you are going to do, Some of us may have the time during lunch to you must lace up our sneakers and go for a brisk walk. With determine proper planning, you can take advantage of your your priorities lunch hour and go for a walk. and set them. We are all When I worked at a nine-to-four job, four times inundated a week I went to a swimming pool that was about with so many five miles away. I would dress simply so that I things to do Cycling – A sport of skill and all the time, discipline Continued on page 4

Transplant Chronicles, Vol. 8, No. 2 3 Giving and Getting... Keeping Fit continued from page 1 continued from page 3

immediately. "If it is to save another life, do it," could get my clothes off their mother, Sonia Martinez, quickly answered. and on quickly. Before I Although Ivan’s liver made all the necessary went back to work, I still clotting factors, it still had the defect of causing had enough time for a oxalosis. However, the liver was well enough to quick shower. For you allow Matthew to survive and grow until he could men out there, unless you receive another transplant. wear makeup and blow dry your hair, you have an extra 15 minutes to work out. Ivan underwent his transplant, receiving a It certainly can be done. It’s amazing how a half piece of his mother’s liver. A piece of Ivan’s hour can make an incredible difference in your original liver was then transplanted into energy level, production, self esteem, confidence, Matthew. Both boys did well and returned home mind, body and soul. Your sense of accomplish- after several weeks. Three months later the ment will help to keep you motivated. oxalosis began taking a toll on Matthew’s kidneys, but Matthew had grown enough for his If your workouts are complicated and take too mother to donate a piece of her liver to him. His much preparation, then you will probably not second transplant was performed. keep up with them. Simplify your workouts. It’s easier to make an excuse than to follow through. Today, all three recipients, Astrid, Ivan and Ask yourself if you have time to drive to the gym. Matthew, are doing well. This is a remarkable If not, try a 20-minute walk. Perhaps story about a remarkable family. Despite the working out at home would be more difficulties of having two of their children afflicted convenient for you. Maybe your with a disease that required them to undergo life- workout is repetitive. Be sure threatening procedures, Juan Deleon and his you are performing the correct wife Sonia were able to think about the lives of exercises. You want to be sure you are others and give unselfishly of themselves. It is working on all your muscle groups. also remarkable that living donation for liver This can become a problem if you are T transplant is now a such a successful option. C unsure as to what you are doing. You also can shorten your workouts Adela T. Casas is a at and do them more often. If you do A.I. duPont Hospital for Children in Wilmington, DE. not have an hour to spend that’s fine. Just try to be active every day.

There are so many ways you can incorporate exercise into your daily routine, if you set your mind to it. You need to prepare, plan and be organized.

Ask yourself where you want to be in six months (besides the Caribbean). When you think about how you are spending your time make choices that are going to bring you to the place you hope to be. Then focus on it and go for it.

WHAT YOUR MIND PERCEIVES YOUR BODY T WILL ACHIEVE! C

In health & happiness Vanessa A. Underwood

Baby Matthew with his mother, Jennifer, and sister. He has part of his mom’s liver.

4 Transplant Chronicles, Vol. 8, No. 2 The “Line” on Successful Community Donation Programs: The Case for Grassroots Organ and Tissue Donation Advocacy By Teresa Shafer, RN, MSN, CPTC

A mericans hate to stand in line. And waiting Some people know in line is harder to endure when there is more at about the miracle of stake – getting into a movie late, missing an donation and still do not important meeting or wasting time when a agree to donate when beautiful spring day beckons. When one’s ability asked. So it is not simply to affect the movement of the line or one’s place a task of public education in the line diminishes, the wait is even more and awareness that must acutely felt. be undertaken. To increase organ donation, Waiting for an organ transplant is perhaps the donation must become a worst kind of waiting because you’re not feeling social responsibility and a hopeful act. well and the line doesn’t move fast enough. More than 70,000 people are on a waiting list in this Development of social responsibility is country, while there are approximately 5,800 ingrained in community networks, organiza- organ donors each year. These are facts quickly tions and activities. All of us have our own learned by those standing in this particular line. personal “world” comprised of communities from Knowing this makes the unavoidable fact that smaller to larger: Family, extended family, many of them will drop out of that line, through friends, neighbors, suburb, city, county, state, , before receiving a life-saving organ nation and finally, the world, the ubiquitous transplant all the more real. In fact, 16 people “community of man.” die every day waiting for a transplant. The smaller the community, the more we relate to it, the more real it becomes and the more likely it is that people will feel a sense of social responsibility and desire to experience that hopeful act – agreeing to donate organs and tissues. Churches, philanthropies and news agencies know this because they don’t talk about the needs of the country in general, but rather, make it real by talking about local families, local needs, local news and so on. What can recipients do to help? Do something local! Get involved with your local organization The people in line hope for a good act, a (OPO), transplant center, hospital, church or decent deed – a gift of life in order to get off the service organization to make a difference. Wasn’t waiting list and get on with life. it Tip O’Neil who said, “All politics is local?”

Families of brain-dead patients can make the Making organ donation real to people is done unselfish decision of donating their loved one’s through the tedious, grass roots work of organs. Yet, only about 50 percent of families community advocacy for organ donation and agree to donate. Why only half? It is difficult to transplantation. This is usually long-term work understand the hesitance to donate because we without immediate benefits, but it can be know that donation saves lives and we know that undertaken in such a way that the community most major religions support donation. We also can see the benefits of its work. What this means know that there is no associated financial is that a good number of dedicated people must burden and that organs are scarce. We naively remain active in their community to build a assume that the word is not out yet and that the collective community organ donation experience. public is not aware of the great need for and the After years of investment, this approach will yield benefits of organ and tissue donation. But the truth is less promising than that assumption. Continued on page 17

Transplant Chronicles, Vol. 8, No. 2 5 Transplant News Digest

From the editors of Transplant News Organ, Corneal Donation Showed Virtually No Increase Worldwide In 1999 Despite Public Education Efforts by Jim Warren, editor and publisher

O rgan and cornea donation worldwide showed the Netherlands which reported 41 and 31 virtually no increase in 1999, according to transplants per million population. preliminary statistics released by the United Network for Organ Sharing (UNOS) and the Eye The main reason for the disparity is the Bank Association of American (EBAA) in the U.S., number of available cadaveric donors in the and the International respective countries. In 1999, there were 25 and Foundation, based in Leiden, the Netherlands. 23 cadaveric donors per million population in Except in isolated cases, the number of organs and /Luxembourg respectively, and corneas procured and transplanted were the compared to Germany and the Netherlands, same or lower than 1998, the organizations which had 12 and 10 respectively. report. In the US there were 5,843 cadaveric donors in Despite an increase in both living organ 1999, compared to 5,802 in 1998, according to donation and transplant procedures performed in UNOS preliminary data released in late April. The the US, the number of people in the US who died number of transplants performed was 21,941 in waiting for a transplant in 1999 actually increased 1999, compared to 21,255 in 1998. The 3 percent by 19 percent. UNOS reported that 6,012 patients increase is the first since 1995. The number of died waiting in 1999, compared to 5,034 in 1998. transplants increased for all organs except . The number of transplants actually The EBAA reported that the number of cornea decreased to 2,185 compared to 2,345 in 1998. grafts transplanted increased by 186 (1 percent) UNOS stressed it expects all the reported in 1999, compared to 1998, while the number of numbers to increase slightly once final figures are total donors actually decreased by 4 percent. The tabulated. 1 percent increase in corneal grafts performed is the lowest in 10 years, the association said. UNOS reported that the only good news in donation was the increase reported in living The Eurotransplant International Foundation, donation. There were a total of 4,662 living which coordinates the international exchange of donors in 1999, compared to 4,391 in 1998, a 7 donor organs in six countries—Austria, , percent increase. Living liver donation showed the Germany, Luxembourg, the Netherlands and most dramatic rise increasing more than 200 Slovenia—reported that the total number of organ percent from 56 donors in 1998 to 173 in 1999. transplants performed in the population area was about the same in 1999 as in 1998. “There were two main reasons why we were able to perform more transplants last year,” said There were 5,183 organ transplants performed William Payne, MD, UNOS president. “The in 1999, compared to 5,161 in 1998, Eurotrans- increase in living donors played a large role, but plant reported. The number of organs donated in we also made better use of the limited supply we 1999 was 5,060 compared to 5,042 in 1998. did have.”

The disparities between the six European Not surprisingly, the number of patients on the countries have been increasing steadily, according waiting list for a kidney experienced the largest to Eurotransplant. For example, in Austria, number of in 1999 – 2,969. They were Belgium and Luxembourg there were 87 and 70 followed by liver patients – 1,733, heart patients – transplants per million population respectively 706, and patients – 578, kidney- – performed in 1999, compared to Germany and 167, heart-lung – 53, intestine – 42, pancreas – 17 and pancreas islet – 5.

6 Transplant Chronicles, Vol. 8, No. 2 The EBAA data, which is based on 83 US and position paper on adult-to-adult living liver 10 international eye banks reporting, showed that donation. The position paper was developed over there were 95,366 corneal donations from 48,122 the past year by the ASTS Ethics Committee donors in 1999, compared to 95,103 donations chaired by Mark Adams, MD, transplant surgeon from 47,889 donors in 1998. The number of at Froedtert Memorial Lutheran Hospital in corneal donors has remained essentially static Milwaukee, WI. since 1995. The EBAA reported there were 95,646 donations from 48,332 donors in 1995. The position paper lays out the rationale for performing living donor liver transplants and sets The 83 US eye banks reported there were out specific guidelines for “donor and recipient 86,877 donations in 1999 from 43,802 donors, selection, center criteria, and the best approach to compared to 90,621 donations from 45,629 obtaining informed .” donors in 1998. To receive a copy of the ASTS Position Paper on Up-to-date statistical data can be found on the Adult-to-Adult Living Donor Liver web sites of UNOS (www.unos.org), EBAA Transplantation, contact the ASTS, 1215 (www.restoresight.org) and Eurotransplant Jefferson Davis Highway, #1109A, Arlington, VA International Foundation (www.transplant.org). 22202. Phone: (703) 414-3033, Fax: (703) 414- 8298; Web site: www.asts.org ASTS CREATING NATIONAL REGISTRY OF ALL LIVING DONOR LIVER TRANSPLANT PROCEDURES TO HELP WORLD’S FIRST INTERNAL TRANSPLANT OF A ASSESS RISK MINIATURE LVAD PERFORMED AT TEXAS HEART INSTITUTE The American Society of Transplant Surgeons (ASTS) announced on May 15 that it is creating a The world’s first recipient of a Jarvik National Registry to gather data that will allow 2000 miniaturized left ventricular assist device potential donors and to accurately (LVAD) “looks great” and “is doing fine,” according assess the risks of donation and to keep track of to surgeon O.H. Frazier, MD, chief of cardio- the number of living donor liver transplants. pulmonary transplantation at the Texas Heart Institute at St. Luke’s Episcopal Hospital in “The continued shortage of — Houston. combined with a liver transplant list that has now climbed to more than 15,000—is leading a On April 13, Frazier implanted the battery- growing number of patients to consider living powered pump, about the size of a wine cork, donor liver transplants,” said Nancy Ascher, MD, directly into the left ventricle of a woman with the new ASTS president, announcing the creation congestive heart failure (CHF). Frazier was of the registry. “While the early experience with assisted in the operation by Robert Jarvik, MD, adult-to-adult living donor transplantation at the pump’s New York-based inventor, and centers performing this complex procedure is Stephen Westaby, MD, a prominent British encouraging, donor deaths have occurred,” Ascher surgeon. pointed out. “Because of the lack of data, accurate risk assessment for the donor is Although the landmark procedure was currently not possible.” Ascher is chairperson of performed as a stopgap until a donor heart can the department of at the University of be found, it brings the 40,000 Americans with California at San Francisco. end stage CHF a giant step closer to a permanent alternative to . Moreover, by The announcement was made at Transplant giving the damaged heart a chance to rest, the 2000, the first ever joint meeting of the ASTS and device may even allow recovery of natural cardiac the American Society of Transplantation (AST), function. held May 13-17 in Chicago, IL. More than 3,600 transplant surgeons and physicians from around Unlike previous pumps, which were large, the world, attended the meeting, an increase of bulky and had external components, the Jarvik about 25 percent over last year. 2000 is small enough to fit in a child. It is entirely internal except for a thin wire and small dial that Along with the announcement of the allows blood flow to be turned up during establishment of the registry, the ASTS released a strenuous activity. In some patients, as the series of guidelines for living liver donation in a

Transplant Chronicles, Vol. 8, No. 2 7 weakened heart regains strength, the dial can be The Texas Heart Institute plans to test a total turned down until the heart is completely weaned replacement heart, which it has developed in off the assist device. conjunction with Danvers, -based Abiomed Inc., by year’s end. Because of its tiny size, the Jarvik 2000 is easier to implant and remove than its INJECTIONS OF LAB-GROWN LIVER CELLS MAY KEEP predecessors and results in significantly less END STAGE LIVER DISEASE PATIENTS ALIVE blood loss during insertion. Patients generally lose 20-30 units of blood during implantations of Injections of laboratory-grown liver cells may larger LVADs, Frazier said, whereas “this patient keep patients with end stage liver disease alive (who received the Jarvik 2000) lost one-fifth of while they wait for a liver transplant and may also one unit.” help treat inherited liver diseases, according to a report presented last month at the Experimental The FDA gave the Texas Heart Institute Biology 2000 meeting in San Diego, California. permission to implant the device in a limited number of patients. Houston is the only US site of Stephen Strom, MD, of the University of the pilot study, but the pump will also be tested Pittsburgh, reported on studies in in . which his team injected liver cells into the spleens of patients with terminal liver failure to serve as a Ten years in the making, the Jarvik 2000 is the bridge to transplantation. Six patients died, but latest in a four-decade quest to find a permanent seven survived an average of four days after liver alternative to heart transplantation. Frazier cell injection before receiving their transplants. credits legendary heart surgeon Michael DeBakey of the Baylor College of in Houston with “They probably were rescued by the whole liver initiating all research into circulatory support transplant rather than the cells,” Strom systems. “Without Dr. DeBakey’s role in 1963 acknowledged. One patient recovered after when he got [federal] funding for the artificial receiving the liver cells alone and never received a heart program, none of this would have been transplant. possible,” said Frazier, a former DeBakey trainee.

In 1966, DeBakey implanted the first Strom’s group also used the liver cells to successful LVAD, which he helped develop, in the correct liver function in an 11-year-old child with heart of a 37-year-old woman from whose Crigler-Najjar syndrome, an inherited liver disease heart would not restart after surgery. The LVAD in which a missing enzyme affects the liver’s kept her alive for 10 days, until her own heart ability to process bilirubin, leading to jaundice. recovered its pumping ability. Some 20 years The idea behind the liver cell injections was to later, DeBakey, now 91, invented a small “seed” this liver with normal cells containing the continuous flow pump that fits beneath the heart. missing enzyme to try to avoid transplantation. It has been implanted as a bridge to transplant in Injection of 7.5 billion liver cells into the 28 people in Europe and the surgeon expects to youngster’s liver caused activity of the defective receive FDA approval this year to study the device enzyme—bilirubin UDP-glucoronosyltransferase— in the US. to rise from 0.5 percent to 5.5 percent within one month. Noting that a 10 percent level of the Barney Clark, in 1982, was the first person to enzyme is probably ideal, “this appears to be what receive a Jarvik-7 LVAD. He lived for 112 days might be close to a 50 percent clinical cure,” tethered to a large console of electronics. In 1986, Strom said. Jarvik and Frazier began developing a Twenty-two months after the liver cell miniaturized continuous flow pump. By 1997, injections, the patient’s bilirubin level fell by more four heart-assist devices—far smaller and more than 65 percent and the need for phototherapy to efficient than the Jarvik-7 but not as tiny as the treat jaundice decreased by about 50 percent. Jarvik 2000—were in common use. And in 1998, Another injection of liver cells is planned in an DeBakey’s miniature LVAD was implanted in a attempt to achieve a complete cure. 56-year-old Berlin man.

8 Transplant Chronicles, Vol. 8, No. 2 GENETIC TESTING CAN HELP IDENTIFY KIDNEY All of the subjects, ranging in age from 29 to TRANSPLANT RECIPIENTS WITH VIRUS THAT CAUSES 53, have remained -free for four to 15 ALLOGRAFT FAILURE months with a median of 11 months. This is a remarkable rate because data from the Genetic testing can help identify which kidney International Islet Transplant Registry found that transplant recipients carry a virus that is a major only 12.4 percent of 267 islet cell transplant cause of allograft failure, according to a study in recipients were insulin independent beyond one the May 4 issue of the New England Journal of week and just 8.2 percent beyond one year. Medicine. James Shapiro, MD and colleagues of the More than 80 percent of the population is University of in Edmonton, infected with the BK virus. For most people with developed the experimental protocol, which healthy immune systems, the infection causes no involves injecting islet cells into the liver via the symptoms, but in kidney transplant recipients, portal vein and preventing rejection using a BK can cause renal failure. To study the impact three-drug regimen of plus low-dose of the BK virus on , Volker and . Nickeleit, MD, and colleagues at the University of Basel in Switzerland used a polymerase chain Prior to transplantation, Shapiro said all eight reaction (PCR) to detect the virus’s DNA in the patients had experienced severe hypoglycemic blood of nine kidney transplant patients who had blackouts and metabolic instability. Currently, viral disease affecting their transplant and 41 ‘‘none—has residual diabetes by American who had no signs of such disease. PCR testing Diabetes Association criteria’’ nor has anyone identified BK virus in all nine transplant experienced episodes of acute rejection, diabetes- recipients with kidney disease. Of the 41 related symptoms, elevations in lipid levels, or recipients without kidney disease, the virus was other complications. detected in just two people. Most patients required cells from more than Acknowledging that the technique requires one donor organ and required two injections of further study, the authors concluded that PCR cells to become insulin independent. And all testing is an effective way to identify which must continue the immunosuppressive regimen kidney transplant recipients are at risk of indefinitely, if not life-long. developing renal disease due to the BK virus. Currently, the researchers use the test as a The Juvenile Diabetes Foundation praised the screen in their practice. If a transplant recipient team’s accomplishment, heralding the has cells in the urine suggesting an active BK ‘‘,’’ as it has been dubbed, as viral infection, PCR testing is performed. If that ‘‘a very significant step forward in curing type 1 test is positive, the investigators look for the diabetes.’’ virus in a kidney biopsy. ‘‘This is perhaps the most important finding in Currently, there is no cure for the BK virus. research in the past decade,’’ But identifying the infection early and lowering said Dr. Richard Furlanetto, medical director of the dose of immunosuppressants may help the the Juvenile Diabetes Foundation. ‘‘It represents keep the virus under control, a real proof of concept.’’ thereby preventing allograft failure, said co- author Hans Hirsch, MD. Yet as diabetics worldwide clogged phone lines trying to enter clinical trials, Shapiro cautioned TRANSPLANTING INSULIN CELLS IN DIABETICS that at this point the is appropriate only in adults who have truly failed at injected insulin In a third report, Canadian researchers have treatment. successfully freed eight diabetics from insulin dependence by using a novel, steroid-free He added that the safety of the technique in immunosuppressive regimen in transplanting children will not be known until longer-term T insulin-secreting islet cells. results are available. C

Transplant Chronicles, Vol. 8, No. 2 9 Transplant Chronicles Celebrates

B. Miss America, Heather French, greets a young spectator.

A. Competition’s tough! Cyclists meeting the challenge race for the finish line at the U.S. Transplant Games.

C. Opening Ceremonies plays to a packed house.

D. Kenneth Branch, staying ahead E. Flight to hit the water. Swimmers take off! of the game at track.

10 Transplant Chronicles, Vol. 8, No. 2 The 2000 U.S. Transplant Games

F. U.S. Transplant Games athlete Darin Young greets Olympic track star Carl Lewis

G. Athlete Whitney Peterson: Sheer determination!

H. Glory! Medalists in the 5K race raise their hands in triumph on the podium.

I. Swimmer challenges himself to reach the finish line.

J. Little Mitchell Grayson: Tomorrow’s athletes today! K. Team : proudly showing their medals.

Transplant Chronicles, Vol. 8, No. 2 11 Minimally Invasive Surgery for Kidney Donation Is it Better?

by Adela T. Casas, MD H undreds of thousands of people are after performing the surgery several times, they dependent on for survival. The majority found that they could remove the kidneys of these people are waiting for kidney trans- without causing harm. The kidneys worked well plants. However, the demand for kidneys always once they were transplanted. The greatest benefit seems to be higher than the supply. Hundreds of of this method was to the donor. The pain after people die each year waiting for a kidney. surgery was much less. The scars were smaller. Thankfully, every year many brothers and sisters, The time in the hospital was shorter. The mothers and fathers and husbands and wives recovery time was less and the return to work give of themselves in the most unselfish way and was faster. donate one of their kidneys for their loved one. There were problems with the new procedure. For many years, the donor underwent quite a The surgery was technically challenging and difficult operation. In fact, the operation for the time-consuming. Many surgeons did not feel donor was much worse than the comfortable doing the operation. operation for the patient receiving the Because of this, they would not offer transplant. The donor’s scar was it to patients, so only a few patients larger and the operation took longer to were benefitting from the procedure. perform. The pain donors experienced after surgery was worse and the A few years ago, the “hand- recovery time was long. Despite all of assisted” procedure was developed. this, family members gladly This added a dimension missing underwent the procedure for the from the laparoscopic procedure. benefit of their loved one. However, a The surgeon actually makes a small few years ago, thanks to the Nintendo scar on the abdomen to put a hand generation and some surgeons with guts, the inside the abdomen. This allows the surgeon to “minimally invasive” transplant procedure was feel the kidney and the important structures developed. around it. It also allows the surgeon to move the kidney and add that “third” dimension that is lost There are two ways to perform this procedure. when you are working on a television screen. The It was first developed as what is called a procedure takes less time and is considered safer “laparoscopic kidney surgery.” This means that for the patient and the kidney. The advantages of the entire procedure is done using a camera. the laparoscopic procedure are maintained and it Instead of making one big scar and cutting a lot appears that the kidney works faster after of muscle, multiple small scars are made and a transplant. camera is inserted into the abdomen. Using a television screen and special instruments, the The hand-assisted procedure gives the surgeon surgeon makes another larger incision (but much more control of the surgery while still offering the smaller than the one made with the old operation) donor a good operation. We have come a long way to take the kidney out. in the past few years when it comes to kidney recovery for transplantation. We can now offer Why do it this way? At first, many surgeons family members a less complicated operation that questioned this procedure, too. The only reason will recover a good functioning kidney for their that the donor was having the surgery was to loved one while decreasing post-operative pain donate a kidney. If the kidney was injured during and recovery time for the donor—the best of both T the operation and could not be used it would worlds. C create a terrible ethical complication. However,

12 Transplant Chronicles, Vol. 8, No. 2 medical beat Why Do I Need to Follow My Cholesterol and Triglyceride Levels? What Can I Do About Them If They Are High? by Ira D. Davis, M.D.

A s many as eight out of 10 transplant menopause for women), high blood pressure, recipients have elevated blood levels of cholesterol smoking and diabetes are risk factors for heart or triglycerides, referred to as hyperlipidemia. disease. This problem is of great concern since hyperlipidemia (high lipid levels) is a major risk Following a diet in which about 55 percent of factor for developing hardening of the arteries in calories come from carbohydrates, 15 percent the heart and vessels of the legs. This article from protein and less than 30 percent from fat discusses the causes of hyperlipidemia in can help lower cholesterol. Also, cholesterol transplant recipients and provides a strategy for intake should be limited to less than 300 reducing the risk of complications. milligrams per day by eating foods such as fruits and vegetables, low-fat dairy products, low-fat Many factors contribute to elevated blood lipid starches (breads, potatoes, cereals), lean meats levels in transplant recipients. They include side and no more than three eggs per week. effects from transplant medications such as In addition, weight reduction by prednisone and cyclosporine, poor kidney reducing calories and function, a family history of elevated blood lipid increasing exercise is levels, obesity and high pre-transplant lipid levels. important in reducing Hyperlipidemia is more common in people who blood lipid levels. take cyclosporine (e.g., Neoral or Sandimmune) than in people who take tacrolimus (e.g., Prograf). Several drugs are Rapamycin-based regimens using sirolimus (e.g., available to reduce blood Rapamune), recently approved by the FDA, are lipid levels. These include a also associated with elevated blood lipid levels. new class of drugs such as atorvastatin (e.g., Risk factors for increased blood lipid levels in Lipitor) or simvastatin (e.g., Zocor) to reduce children include prednisone therapy, cyclosporine blood cholesterol levels to a greater degree than therapy, preexisting elevated blood lipid levels triglycerides. Gemfibrizol (Lopid) is another class prior to transplantation and reduced kidney of drugs that reduces blood triglyceride levels function. more than blood cholesterol levels. Although these drugs can be associated with muscle Management of severe hyperlipidemia, which is irritation, this problem is less likely with low characterized by serum cholesterol levels of above doses. Patients need to be monitored closely for 275 milligrams/deciliter, “low density” cholesterol signs of muscle injury and should contact the (LDL cholesterol) above 190 (mg/DL) or doctor if they develop muscle pain or cramps. triglyceride levels above 400 Unfortunately, these drugs have not been (mg/DL), requires a number of approved for use in children. Other strategies lifestyle changes and drug therapy. under investigation to reduce blood lipid levels People who have heart disease include steroid withdrawal and low-dose or are at risk for heart disease cyclosporine regimens. need to make lifestyle changes and/or take medications. Elevated blood lipid levels are a common problem in transplant recipients. It is essential A family history of heart disease that you talk to your transplant (age 45 or older for men; post regarding the strategy that is best suited for you T in order to reduce your blood lipid levels. C

Transplant Chronicles, Vol. 8, No. 2 13 Employment Following Transplantation and the Availability of Health Insurance By Charlie Thomas, ACSW, CISW

A new federal program will Medicare Part B can also be assist Social Security Disability extended for the same time (SSDI) and Supplemental Security period by paying the regular Part Income (SSI) beneficiaries in B premium. This means that returning to work by providing transplant recipients receiving extended medical insurance and SSDI who return to work can expanding vocational rehabilitation extend their Medicare coverage and employment services. The up to eight and one-half years. Ticket to Work and Work Incentives This will be very helpful for Improvement Act of 1999 was transplant recipients, since approved by Congress and signed Congress has also extended into law by President Clinton last Medicare coverage for December. immunosuppressive medications to 44 months following the This program will be helpful to transplant under certain transplant recipients receiving circumstances. Social Security benefits who want to return to work. One study The Ticket to Work and Work found that approximately one- Incentives Improvement Act also third of heart transplant recipients were willing gives states expanded options and funding for and able to work, but were trapped by the risk of Medicaid “buy-in” for workers with disabilities. losing Medicare or Medicaid coverage without any This option allows workers with disabilities to guarantee that the new employer would offer buy into Medicaid even though they are no health insurance. Congress has already passed longer eligible for SSDI or SSI disability benefits the Health Insurance Portability and Accountab- due to medical improvement. State Medicaid ility Act of 1996, that prohibits employer health programs will collect premiums set on a sliding insurance plans from denying coverage for scale based on income. However, each state must preexisting medical conditions for longer than 12 pass additional legislation in order to participate. months. The absence of guaranteed health The implementation date is also October 2000. insurance has been a major disincentive for Several states have already passed legislation transplant recipients who want to work. This is and many others are studying the proposal. of particular importance since transplant recipients must take immunosuppressive These medical insurance provisions are medications and have regular medical follow-up intended to support beneficiaries as a bridge to for the rest of their lives. employment. Recipients should feel encouraged about returning to work, secure in the The Ticket to Work and Work Incentives Act, knowledge that their employment is not along with the Health Insurance Portability and threatened by fear of losing their health Accountability Act offers new opportunities for insurance. If you have questions about extending transplant recipients who are able and want to Medicare, contact your transplant social worker return to work. or you may call the Social Security Administration at (800) 772-1213. For Effective October 2000, Medicare Part A information regarding the Medicaid buy-in coverage will be extended, premium-free, for option, please contact Shaun Hill at the National recipients who return to work beyond the four Kidney Foundation Office of Scientific and Public years currently provided for SSDI beneficiaries Policy at (800) 889-9559 or go to our web site at T for an additional four and one-half year period. www.kidney.org/general/pubpol/wiiact.cfm. C

14 Transplant Chronicles, Vol. 8, No. 2 eating right Blood Pressure Recommendations Change: DASH Diet Can Help H igh blood pressure, which affects about one calcium, magnesium and fiber. It calls for in four people in the , can lead to reductions in total fat (to about 27 percent of heart attack, stroke and . For calories) saturated fats (6 percent of calories), years, doctors have recommended four lifestyle cholesterol (150 milligrams a day) and red meats. measures to help prevent or control high blood pressure, or hypertension: reducing excess By following the DASH diet for eight weeks and weight, reducing sodium (salt) intake, keeping limiting sodium to 3,000 milligrams a day, people alcohol intake to no more than two drinks a day in the research study who had normal blood (for those who drink) and getting regular pressure were able to reduce their systolic blood exercise. A major study has now added a fifth pressure by 3.5 mmHg and their diastolic by 2.1 recommendation a diet rich in fruits, vegetables, mmHg. Those who had elevated blood pressure low-fat dairy products and other low-fat foods. (almost a third of participants) had even more dramatic results in the two-month trial: they The Dietary Approaches to Stop Hypertension lowered their systolic blood pressure by 11.4 Study, known as DASH, found that following mmHg and their diastolic by 5.5 mmHg. this diet and watching salt intake produced a rapid and significant drop in blood pressure, in Lowering blood pressure is not the only benefit some cases comparable to taking an anti- of the DASH diet. It may also help lower the risk hypertensive drug. That means that many people of , osteoporosis and diabetes. Newly with high blood pressure who follow the diet may released data from the DASH study show that it be able to lower their drug dosage or, if their reduces the level of the amino acid, homocysteine. pressure is only mildly elevated, avoid drugs A high blood level of homocysteine appears to entirely. (Never make changes in your medication increase the risk of heart disease, stroke and without discussion with your doctor.) peripheral vascular disease. If you choose to make changes in your diet, you $ High Blood Pressure Recommendations should discuss them first with your physician and The DASH diet reduces both the diastolic and registered dietitian to determine if they are the systolic blood pressure. This is good news appropriate for you; then make them gradually. because earlier this year the National Heart, One way to approach this is to concentrate on Lung and Blood Institute launched a campaign one food group at a time. The National Institute of to emphasize the seriousness of high systolic Health recommended servings in each food group blood pressure, especially for adults who are are listed below. If the number of servings seems middle-aged or older. While controlling the high to you, remember that a serving size is small diastolic blood pressure (the bottom number) for example, 1 slice of bread, 10 cherries, a half T may count more for younger people, it is now cup of cooked carrots. C recognized that as people get older, systolic blood pressure (the top number) becomes more Following are the recommended servings in important. The target blood pressure each food group in the DASH Diet. All are recommended for people with hypertension is servings per day unless noted: 140/90. For people with both high blood pressure and diabetes, the recommended goal Grains/grain products: 7-8 has been 130/85. A new report from the Vegetables: 4-5 National Kidney Foundation, published in Fruits: 4-5 September 2000, recommends that this be changed to 130/80. Low fat or nonfat dairy foods: 2-3 Meats, poultry, fish: 2 or less C DASH Diet Fats and oils: 2-3: The DASH diet emphasizes fruits, vegetables, low-fat dairy products, whole grains, nuts, Nuts, seeds and legumes: 4-5 per week poultry and fish, and is rich in potassium, Transplant Chronicles, Vol. 8, No. 2 15 Compliance, Adherence and Choices By Maurie Ferriter C ompliance, adherence and choices are three further down the road with our transplant, many very simple words that we have all heard at some individuals start to vary from the norm. It’s easy point in our lives. However, they can have very to see why. We start to feel much better and can different meanings and implications to those who do so many more things than we did prior to say them and those who hear them. This article transplant. In some cases people have said that will discuss these words as they may be used by they have returned to a fully normal life. us (transplant recipients), members of our health Seasoned, long-term transplant patients know care team and family and friends. Let’s explore this is not true. You can get close to normal but each one separately and then together. never quite there. Possible long-term medication issues or the chance of reoccurring diseases are Compliance to certain people means doing usually the things that bring people back to exactly what someone tells them to do. The word reality. often carries a rather harsh or judgmental tone, depending on the situation in which it is used Choices—The process of varying from the and by the tone of voice of the person saying it. norm is where some of us learn about choices. Sometimes we feel that the health There are several kinds of choices. care team, our family and friends are On-the-spot decisions, except in a watching every move we make. It medical emergency, are usually not seems that they are always nagging the best decisions. Our health care us about taking our medications, can be very complicated and many watching what we eat, keeping our aspects need to be considered when appointments, or lifting too much making major decisions. Informed weight, etc. The term “non-compliant” choices are the goal. We should be usually comes up in these situations. able to sit down with our health These people all have our best care team, a family member or interest in mind, but it does not friend and discuss all options about always come across that way. It can an issue, then make a decision. seem that they don’t say anything Supporting our choice, even if you when we are being “compliant,” but are right don’t agree we’re making the best one, is a hard there to point out to us when we are not. They thing for many people. Patients can get a great feel they must remind us when we fail to live up sense of control over their own life by making to their expectations. To many people adherence their own choices. Our choices carry a big and compliance mean the same thing. Literally, responsibility, however, we must take the the words have the same meaning. However, responsibility to learn about the issues and adherence seems to have a softer, less judgmental understand the consequences if things don’t tone to it. work out as planned. The health care team must Adherence seems to imply that the people who be honest and straightforward with us, and surround us have laid out the way they think we present material in a way that is easily should act in a certain situation, then watched to understood. see if we do “the right thing” for ourselves. I look at adherence as a bridge between compliance and Making choices in this manner is not for choices. In situations that involve both compli- everyone. Many people don’t feel they are ance and adherence, we are given information capable of getting very involved in their medical about how to act in a one-way conversation. The care. Others don’t want to be in a position of person usually says something like “These are the responsibility for themselves. It has been my things you have to do to keep your transplant observation that well-informed people handle working. This is the way we do things at this adversity much better and feel more in control of transplant center,” or “All our patients get these their life than people who have not taken the instructions at the time of discharge from the opportunity to explore their options and make T hospital.” their own choices. C Many transplant recipients do well in this type (Dedicated to the memory Tom Fortunato who of scenario for long periods of time. As we get taught me a lot about making choices). 16 Transplant Chronicles, Vol 8, No. 2 Volunteer efforts become key in these The “Line” communities. Organ Procurement Organizations continued from page 5 must be poised and willing to invest time and resources for these community-based volunteer efforts. positive results. Donation will have become the “right” thing to do and it will feel good. Finally, it is important to celebrate a community’s commitment and generosity All of the key individuals involved in the towards one another. Many families have made donation process will be reinforced every time the decision to donate organs after their loved they see they have gotten someone from their one has died, and have benefited from the community out of that line and off the waiting knowledge that they have saved lives—maybe list. This is more likely to occur and easier to even someone close to them. Someone dies, accomplish, of course, when there is a local someone gets off the list, and someone moves up transplant center serving the community whose on the list. These “someone’s” are part of a family patients benefit from the community’s advocacy. and a community. They are critical to the grass For communities that do not have local roots effort of a sustained, productive, long-term transplant centers evidence and reinforcement of and successful community organ donation T their efforts is more difficult to recognize and the program. C end results of their efforts are often less than what is possible to achieve.

Donor Family Recognition

poetry poetry corner corner A Gift of Love By Bill Orr

A Gift of Love they gave to me. Once I was blind and couldn’t see. You died. Your eyes they gave to me. A Gift of Love you gave to me.

Although you died, you haven’t gone. In others lives you still live on.

Your heart still beats. Your eyes still see. Your Gift of Love you gave to me. Recipient, Michael Coonfield (far right) We all can help, it isn’t hard. honors a donor family, Jeff, Linda and Fill out and sign the Donor Card. Erin Wentzell (far left), at Opening Fill out the card and if you do, T Ceremonies. Your Gift of Love comes back to you. C

Transplant Chronicles, Vol. 8, No. 2 17 Choosing a Home Health Care Company By Laurel Williams Todd, RN, MSN

I n today’s health care environment, patients ■ Does the company have nurses trained to are spending less time in the hospital for understand the specific needs of transplant medical problems experienced both prior to and patients (e.g., when to notify transplant after transplantation. One reason patients are center; knowledge of medication side effects; able to spend less time in the hospital is the hyperalimentation and central lines)? range of services that can be provided by home ■ Does the company provide a wide range of health care companies. performed in services to both in-state and out-of-state the home by capable home health care providers patients? allow patients and their families the ability to recover in a more comfortable environment, Other services for the patient and transplant maintain more normal routines and have less team to consider are: exposure to hospital-acquired infections. ■ Does the company have a system for There are many different home health care tracking when to reorder medications companies that provide services across the and/or supplies? country. Do they provide the same services? Do ■ How often does the company check on they provide the same quality of services? Do patients and their needs? patients and families have a choice of ■ Does the patient have 24-hour access to a companies? And if there is a choice of registered nurse and pharmacist? companies, what should consumers ■ If a special medicine or service look for and what questions should has been ordered, can the company they ask in making the choice? obtain the medication or service? ■ Is the company willing to work Insurance companies often have with the patient and family to a specific home health care "customize" services and the plan of company they contact for patient care for the best comfort of the services. If your insurance company patient? has not provided you a list of ■ Do the company’s nurses provide options, the transplant financial a safe environment when performing coordinator, social worker or patient care? discharge planner should have the information. ■ Will the nurses know when something is In addition, your transplant team or primary wrong? care doctor may be able to recommend a home health care company with which they have had When looking at services provided by different positive experiences. home health care companies, the most important factor is how comfortable the patient, The things that most health care providers family and primary health care team are with look for in quality home health care the available services, staff and patterns of companies include: communications. Working together as a team, the patient and family, local physicians, ■ How long has the company been treating transplant team and company should strive to transplant patients? provide the best therapy in the safest and most ■ Is the company familiar with the comfortable environment. If questions arise transplant center’s approach to patient about the different home health care companies, care? the transplant team or local physicians are ■ Are the nurses familiar with the medications ready resources to provide you with information used by transplant patients? to help you make the best decision for your T individual needs. C

18 Transplant Chronicles, Vol. 8, No. 2 ask the pharmacist , Better Medicine? By Drew Silverman, PharmD

E ach year consumers spend billions of the herbal products you buy are pure. The label dollars on herbal . Because herbals are may say that each tablet or capsule has a strength not prescription medications, companies can make of the "active" ingredient, but the quality control is unrealistic claims about their safety and how well lacking. There is the potential for ingredients that they work. These drugs currently do not require do not appear on the label to be added to the Food and Drug Administration (FDA) approval to product. be put on the market. This creates a buyer-beware market. There is minimal safety data on herbal medications, especially in patients with specific Prescription medications in this country go diseases. We have no idea what the active through vigorous testing before the public can use ingredient is in most products, and certainly have them. Studies are done to determine how effective no data on what, if any, chemicals from the they are with diseases such as kidney failure and herbals may build up in patients with kidney liver failure. Drug interaction studies make sure failure, liver failure, heart disease or a host of each new medication can be safely given with other illnesses. other medications. This is in complete contrast to what is done with herbal medications. These products may come labeled as “natural” These substances may be dangerous. There is or “drug free,” but the definition of natural is very little data on drug interactions with other herbs, liberal in this country. A natural product can be prescription or over-the-counter medications. chemically altered during manufacturing and still When you use an herbal product that has multiple be considered natural. A drug is any chemical ingredients in it, no one knows if they work compound that may be used on or administered to together or work against each other. There isn’t a or animals as an aid in the diagnosis, lot of data on how well these compounds work. treatment, or prevention of disease or other period. There are, however, a lot of testimonials abnormal condition. In a nutshell, a drug is from perfect strangers. something that you swallow, inject or apply to any part of your body that causes some kind of change Herbal medicine is not new. The Chinese have in your body. This means that all herbal products been using herbs for thousands of years. In the are drugs. The FDA just considers them over-the- U.S. we have used herbs and plants to develop counter drugs. drugs. For example, digitalis is a successful heart Finally, ask for proof before you try a product. drug, but it was first extracted from purple Talk to your doctor and pharmacist about foxglove when farmers noted that cows were dying potential and known drug interactions and side after eating the plants. Botanists and research effects. Let them help you research the products. scientists have used herbs and plants as well as You should always talk to your doctor or soil and animals to create many of the medica- pharmacist when taking any new medication— tions your doctor prescribes today. They weren’t over-the-counter or prescription. T safe for people to use until studies were conducted C to prove their usefulness because each of these Drew Silverman, Pharm.D. Is a doctor of had the potential to be dangerous if used in its at Tampa General Healthcare in Tampa, natural form. where he specializes in transplantation. Drew is now on dialysis, waiting for a kidney In contrast to prescription and over the counter transplant. His first transplant lasted 15 years. medications in the U.S., there is no guarantee that

Transplant Chronicles, Vol. 8, No. 2 19 The Screw That Won the Gold By Bill Bradley, Team

T he 2000 U.S. Transplant Games, held at As I walked away, a young man said, "Wait a Disney’s Wide World of Sports™ Complex were minute, I picked up a tiny screw in another tremendous. As a kidney transplant recipient, I building this morning. Let’s see if it is still in my have attended several transplant games, pocket." He carefully took everything out of his including the World Games in . But, in pockets and finally found the tiny screw. I all of the games I have attended, I have never wondered if the screw would fit my glasses. I won a gold medal. I hoped that 2000 would be wondered if anyone had a tiny screwdriver I my year! could use if it did fit. Again, the answer was no. I asked if anyone had a I won a bronze medal in the pocketknife and someone actually softball throw, a silver in the shot did! Incredibly, the "donated" put event, but NO GOLD! I knew screw fit perfectly and the the right lens was loose on my pocketknife made a great glasses, but just before the screwdriver. I thanked the high jump event, it popped man profusely and went out and would not pop back back to the high jump area in! The screw that held the to compete. frames together was missing. I couldn’t do the high jump if I I won! Later, when I accepted couldn’t see. I walked over to the the gold medal for the high jump medical tent and asked if they could competition, I knew in my heart that fix my glasses, but the answer was no. winning the gold would not have been They didn’t have the equipment to fix possible without the "miracle" of a "donated" T glasses. My heart sank. screw. C

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