Just Julie: My Life’S Journey by Julie Destafano O N April 16, 1995, I Received Correctly Diagnosed, the Ance

Volume 8, Number 3 A publication for transplant recipients of all organs and their families, Winter 2001 published by the National Kidney Foundation, Inc. Just Julie: My Life’s Journey By Julie Destafano O n April 16, 1995, I received correctly diagnosed, the ance. These feelings often keep a liver and got my life back. condition was beyond repair. As me from telling people about my The University of Nebraska in a result, cirrhosis damaged my surgery. When people, teens Omaha made the skies blue liver. I needed a transplant. among them, hear the words again for a very sick 12-year- "liver transplant," they associate old girl. My journey for life took me it with a "sickly, fragile, frail" from my home town of Tampa, person. I don’t want people to Today, at 18, I never take life Florida to Omaha, Nebraska. I think that I want sympathy or for granted. Every time I sail, arrived in Omaha in a wheel- special treatment. I want people skate, jetski, hug someone, chair and came home running. to just see me, Julie. When I tell breathe, or dream, it is with people about my transplant, great respect for someone who they are usually shocked. Some unselfishly gave a piece of even say "Oh my God, you themselves to me and gave me a would never know, you are so whole world of unending healthy." I believe they respond possibilities. this way due to lack of public education about transplants. I As our lives pass day to day, also believe the shortage of the petty, shallow and trivial organs can be linked to this lack distract us from seeing what is of information. I knew nothing truly important—life. Life is a of transplantation until I was gift. We are only given one life, facing my own. Everyone whom and we strive to fill it with I told about my transplant was precious memories. Typical teen: Julie enjoys life extremely cool with it. Six years ago, my life was to the fullest. My best friend. Brittainy, threatened by a condition Within six months of having my travels to Omaha with me each known as Budd Chiari transplant, I was back out on a summer for the annual trans- Syndrome. To put a novel in a softball field. plant reunion. The reunions are nutshell, it was a blood clot that awesome. Transplanted teen- constricted the flow of blood out Unfortunately, I still harbor agers from all over the country of my liver. When it was finally feelings of fear and unaccept- Continued on page 3

© Copyright 2001 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

H appy New Year to all!! In 2001 Transplant Chronicles is published by the National Kidney Foundation, Inc. the NKF has brought new faces to Opinions expressed in this publication do not necessarily represent the the Chronicles editorial board. Our position of the National Kidney Foundation, Inc. new editors have many interesting Editor-in-Chief: Beverly Kirkpatrick, MSW, LSW and informative articles and stories A.I. duPont Hospital for Children to bring to you over the upcoming Wilmington, Delaware year. Living donation and Editors: Weston Bush, PharmD Kimberlee Rast, RD humanitarian donation, updates on University Hospital of Cleveland Texas Transplant Institute the immunosuppressive drug bill Cleveland, Ohio San Antonio, Texas and new immunosuppressives in transplantation are Adela Casos, MD Charlie Thomas, CISW, ACSW A.I. duPont Hospital for Children Samaritan Transplant Services hot topics this year that will be discussed in the Wilmington, Delaware Phoenix, Arizona Chronicles, as well as many other interesting topics Ira D. Davis, MD Vanessa Underwood, BS, including body image and self esteem, informed Rainbow Babies Children’s AFAA, ACE Hospital Fitness Trainer/Wellness consent in living donation, faith healers, sexuality and Cleveland, Ohio Consultant Plaistow, New Hampshire intimacy, legislation in donation, employment, islet cell Maurie Ferriter, BS transplantation and post-transplant diabetes NKF of Michigan Jim Warren, MS Lakeland, Michigan Transplant News Fresno, California management. Jenny L. Hoover, RN, CPTC Lifeline Ohio Laurel Williams Todd, RN, MSN As always, along with the topics we have planned for Columbus, Ohio University of Nebraska MC the year, we still love to hear from our readers and Organ Transplant always save space to print many of your stories, Editorial Office: Omaha, Nebraska National Kidney Foundation, Inc. pictures and poems. We look forward to your 30 E. 33rd Street, New York, NY 10016 submissions and comments. (800) 622-9010/(212) 889-2210 http://www.kidney.org

Executive Editor: Editorial Director: T Happy New Year. C Diane Goetz Gigi Politoski Managing Editor: Production Manager: Beverly Kirkpatrick Sara Kosowsky Marilyn Lara for the Editorial Board Design Director: Editorial Manager: Oumaya✏ Abi-Saab Catherine Paykin

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2 Transplant Chronicles, Vol. 8, No. 3 Medicare Bill to Help Organ Just Julie… Transplant Recipients continued from page 1 N ew legislation signed into law at the end of gather for the annual transplant group photo. One 2000 has extended Medicare coverage of critical time, someone mistook Brittainy for a transplant immunosuppressive medications for certain recipient and asked her to be in the photo. organ transplant recipients. I think the things that set me apart from what is considered "the norm" are purely physical. The new legislation covers transplant Living in Florida, the "sunshine state," a.k.a "the recipients who are age 65 or over or disabled land of bikinis," isn’t easy. I have never seen according to Medicare. Anyone who receives anyone walking around showing a scar. I don’t do SSDI meets the Medicare definition of disabled. that, either. I would like to wear a bikini with Most kidney transplant patients who are pride, but I cover up. I also take costly medica- considered disabled will likely have severe tion and will continue to do so for the rest of my diabetes or hypertension, but theoretically they life. Some side effects of the imminusuppressants could be collecting SSDI for a back injury or are that I get sick more frequently. I miss school a some other condition and qualify for transplant lot and the teachers don’t always understand. It coverage as a result of their disability. makes it pretty tough to keep up. The high cost of Here are answers to the most commonly the medication has made it necessary for me to asked questions: attend college full time right after I leave high school in order for my parents’ insurance to cover What kinds of transplants does this the medication. include? Medicare pays for heart, lung and liver transplants if the recipients are aged 65 or My parents are, and always have been, my disabled. These people will be eligible for biggest cheerleaders. They stood by me through indefinite immunosuppressive drug coverage, as every second of the transplant process. They even will kidney transplants who meet age or requested to see the nine pound monster liver disability requirements. that was removed from me. My parents are protective. I would not say they overdo it, but they Who is not covered? Anyone whose kidney maintain a parental strictness that I don’t argue transplant was covered by Medicare solely based with. As expected, they worry about me not taking on the diagnosis of ESRD. my medications. But they shouldn’t be con- cerned. I would never not take them. Right now, How many people will this extension things are going too well for me to not swallow a affect? According to estimates from the couple of pills a day. Yes the medicine is Institute of Medicine, more than 34,800 people expensive, but my life is priceless. will have extended coverage in 2001, growing to more than 44,500 people in 2004. If I had to describe my life today, I would say that it is fun, busy and productive. I work part- What about kidney transplant recipients time at a fabulous little airport, which I love. whose transplants are paid for based solely Aviation is a passion of mine. I fly whenever on ESRD? These people will continue to possible with my father or brother. They are both received drug coverage for 36 months after licensed pilots. I am a senior in high school and their transplant. looking forward to college (I want to be a Nebraska Corn Husker someday). I have a group of What’s the next step? The National Kidney awesome friends. I love to party and shop. I can Foundation played a major role in accomplish- do all of these things because someone gave me ing a dramatic extension of the Medicare benefit the opportunity to do so. Day to day, I run around to cover the most vulnerable, the aged and and live my life—for myself and for that special disabled. What we want to do now will require someone whose opportunity to live was cut short. expanding the entitlement, a far bigger job. The So when I am dancing the night away, going 60 NKF will continue to work to enact legislation on a jetski, riding a moped up and down the that would provide indefinite Medicare coverage sandy strip of Panama City Beach, or laughing of immunosuppressive medications for all with my friends—just being a normal teenager— T I think of my organ donor and think "This is for Medicare transplants. C T you." C

Transplant Chronicles, Vol. 8, No. 3 3 keeping fit Get on Track By Vanessa Underwood, ACSM, AFAA T he arrival of every new year prompts many of 6. What is the best deal? Be prepared to spend us to resolve to make changes and improve our a few hundred dollars on exercise equipment. lives through better nutrition and exercise. I Non-motorized treadmills are inexpensive, believe that every choice we make determines our but very clunky to use. You do not need to destiny. Investing in a healthy lifestyle and in spend several thousands of dollars either. your well-being should be a resolution for the Some machines cost more because they have rest of your life. features that monitor your heart rate, time elapsed and calories burned. Programmable Adherence is the most difficult part of machines that automatically adjust your beginning an exercise and fitness program. workload are good for some, but manual Sticking to a program is tough. Convenience is controls work just as well. the key when it comes to exercise. Many of us don't have the luxury of a health club TREADMILL membership. You may not have the time, the Why Buy? finances or the desire to go to a gym. So your Walking stresses the joints least, but you can next choice would be to work out at home. Home burn more calories by jogging or running. exercise equipment is a huge industry and can often be overwhelming. Choice —The surface can be hard; chose one that has some give to it. Before you buy a piece of equipment here are some things to consider:. ✏An incline-motorized track is important. ✏It should be at least 5 feet long. 1. Will I use this piece of equipment? Be ✏The handrails should support your weight in realistic. case you loose your balance.

2. Will this equipment help me to meet my STATIONARY BIKES goals? If the advertisement claims "it will Why Buy? melt fat away," be very cautious. A Exercise bikes provide a good workout with reasonably fit person can burn 400 to 600 little stress to the knees. calories per hour in any rhythmic class that involves your major muscle groups (legs). Choice —Bikes have electronic brakes that adjust the pedal resistance automatically to keep 3. What is the quality of equipment? Is it well workload constant as pedaling speed changes. made? Do not just look at it. Try using the machine. Is it solid and durable? Does it Make sure you can adjust the resistance of seem to flow smoothly? mechanical brakes with an easy turn of a knob to increase the rate of pedaling speed. 4. Is it comfortable? Pay attention to how your lower back, joints and muscles feel when you ✏Avoid brakes that add resistance with rubber use it. A seat should be comfortable and pinchers—the result is a jerky ride. stable, bars should be padded and move ✏Look for bikes that use either a friction belt or freely, controls should be easy to read, noise wind resistance. level and the stability should be tolerable. ✏A recumbent (reclining) bike reduces strain on lower back. 5. What machine is best? This is a personal ✏Racing handlebars may be uncomfortable for choice. Machines that use arms and legs, some people. burn more calories but may not feel good to you.

Continued on page 8

4 Transplant Chronicles, Vol. 8, No. 3 Freebird: The Tale of One Boy By Joy McCaleb C huck Foster was an average seventh grade have his organs donated. Without a selfish student who loved the outdoors, playing football thought, she gave his heart to a grandmother in and spending time with his friends. The things Kentucky, who would live to see her grand- that I remember him loving the most were the children grow up. A young Tennessee man and connections that made us friends. He loved to an even younger Tennessee woman were given read and write science fiction. I was his English new lungs to have prolonged lives with their teacher and I loved to read everything that he families. A teacher and volunteer in Florida is wrote. free from kidney dialysis, and she now lives a completely new spiritual life with her new Chuck was a lover of nature and all things kidney, fondly named "Chuck." around him. He was kind-hearted, loved the animals at the dog pound, loved to plant trees Two people were given the gift of vision and and take nature walks through the woods and by can now see a sunset and the colors of the the lake near his home. He was just a sweet kid rainbow. Other recipients were given a new who had his whole life in front of him, until one chance at life with a new kidney and liver. day changed everything. In one moment, a young 13-year-old boy Chuck died on June 11, 1996. He had taught me more about living and dying than I complained a day earlier about his back hurting, could learn in a lifetime. I found solace in but with his usual level of knowing that Chuck gave physical activity of playing something even in the end. football and romping with When I returned to school his teenage friends, that to find that I was again seemed like a normal teaching Chuck's childhood complaint. When classmates after being he didn't improve, his moved to the 8th grade, I mother took him to the knew that I had to do hospital. One minute something, but I had no Chuck was fine, and the idea what that would be. I next he was comatose. was devastated with Doctors worked to save his Chuck's death; I knew the life by finding the problem students were going to be, and treating it, but they Classmates of “Freebird” assembling too. were too late. copies of the book. I pondered on this for Chuck was transferred to Erlanger Medical many weeks before finally contacting Tennessee Center, in Chattanooga, in an effort to save him. Donor Services. I knew that I wanted to Surgeons repaired a weak spot in a blood vessel remember Chuck, but I wasn't sure that it was in his chest, but Chuck had already lost too the right thing to do for my students. I was so much blood and his brain had gone too long afraid that what I was about to do would hurt without oxygen. He was declared brain dead, someone even more than they were already which meant he was dead. hurt. But I carried on with my plan. Dead at age 13, this young boy so full of life I wanted to write a book about Chuck and his would never play that high school game of life, but what I wanted to do most of all was to football that he loved so much. He wouldn't get tell Chuck’s whole story. I wanted everyone to to graduate from high school and attend college. know how he had lived and most of all how he He wouldn't get to grow up and have children continued to live in the lives of so many people. I and grandchildren and worry, like all parents do. thought Chuck's story was unique and worth telling. His life was over until his mother did something completely miraculous; she chose to Continued on page 6 Transplant Chronicles, Vol. 8, No. 3 5 Freebird… that healing was taking place. They worked all year on getting just the right poetry and artwork continued from page 5 for their book. Everything that went into that In the past, my students had written books book was a reflection of something they had done about various topics as part of a reading to satisfy the state curriculum for reading, but assignment. Writing a book about Chuck seemed suddenly learning and reading and writing was a like a good idea, but it would not be complete personal thing—more important than any project without mentioning all the lives that he had I had ever seen them produce. saved. That's how I met Deirdre McAdams, RN, CPTC, with the Tennessee Donor Services. I Inspiring called her and asked her to help me. Deirdre and teacher, Joy Tennessee Donor Services, the organ procurement organization that had coordinated McCaler (R) Chuck's donations, contacted all of the with Deidre transplant centers where the organ recipients had received their transplants. They asked if the McAdams, RN, recipients would be willing to anonymously CPTC, holding correspond with us. Most of them said yes. a copy of of the The students wrote letters to the recipients book. telling them about their young friend. These letters were some of the best materials my students had ever written. They had agreed to remain anonymous and to keep Chuck anonymous by giving him an Indian name. They On many days I would find myself on the brink chose Freebird, the title of the song by Lynyrd of tears from both happiness and sadness at Skynyrd, because that was one of his favorite seeing my students finding things about songs by his favorite band. The students also themselves and their friends that were almost too chose Indian names for each of the recipients. much to bear. One day, while discussing organ Each name was chosen with care; many of the donation, a young bright-eyed student raised her names reflected stories that had been read by the hand. The girl, Autumn, told us that she thought students while they were in my reading classes in her brother Joshua had also been an organ 7th and 8th grade. donor. I was so shocked, I wasn't sure how to respond. She told us how she dusts a plaque in The recipients wrote back and told the her home that said her brother had given life to students their individual stories. I will never many people. She had learned that these forget the first day that we got a letter from plaques are issued to the families of donors. She "Daganwida," the recipient of one of Chuck's was sure her brother had been a hero in his kidneys. The students were a bit shocked, and I death, but she told the class that she was afraid was wary. I read the letter aloud, and I know my to ask her parents. voice was quivering. I was trying so hard to be strong because I was the teacher and the project I promised her that I would find out. I went to idea had been established to help us all through her father and told him what she had told us. He the grieving process. I couldn't fail them now. said that Autumn had been so young when it happened, they never dreamed that she would The students immediately wanted to write back want to know more. That night her family sat to her. She had asked them questions about down together and discussed Joshua. The next Chuck and they wanted her to know about him. day, Autumn shared what she had learned. We With more enthusiasm than going to the county all listened, with tear-filled eyes, to her story. fair, these teenagers went to work. And that was Her mother had made a scrapbook about the exactly the response that every recipient got recipients of her brother's organs. It satisfied when they wrote letters to the students about Autumn's hunger to know, and it was so fulfilling their lives, their families and their illness and for the students that when the bell rang that day, especially their recovery from the transplant. no one wanted to leave; not even me. The correspondence brought new life to our project. The students were learning, reading and writing and somewhere, deep down, I could see Continued on page 7

6 Transplant Chronicles, Vol. 8, No. 3 Freebird… Analisa Ciuffetelli continued from page 6 ❝As an eighth-grade student, I truly did not know the impact of Chuck's gift of organ More cherished memories were made that year donation. Now, looking back I see what an than in any of my years of teaching. I know that amazing gift he gave. I will never forget knowing it was a chance in a lifetime to learn about and being a part of the class that had such an myself and my students. I learned one thing for amazing person.❞ sure—I have a year of teaching that not many teachers will ever have. I have a special love in Jon Williams my heart for 129 eighth grade students who are seniors this year at the school where I teach, ❝Chuck's book had a big influence on my life. and I have one special hero named Chuck that It taught me the importance of organ donation. will never be forgotten. It saves lives. It really had an impact on me when I saw the look on the faces of the people With the help of Tennessee Donor Services who worked on Chuck's book. I believe I'm and the Tennessee County Clerk’s Organ Donor smarter about organ donation. Without it, there Awareness Foundation, “Our Hero, Freebird: An would be fewer happy families in the world.❞ Organ Donor’s Story” is now a real, hardback book filled with the students’ work in beautiful April Dunn full color. It has all of the recipients’ letters in real envelopes so the reader can share in the ❝Chuck was a very special friend and it was intimacy of each communication. Two thousand very hard to let him go, but he still lives in those copies have been printed and assembled. These eight people who received his organs. I used to copies have traveled all over the world; even to get very emotional over his death until we Pope John Paul II. It has been very well started the assembly of the book. Then it made received. We are very proud of our labor of love. me feel good to know we are doing something ❞ And this is what some of my students had to good for Chuck. say... Clay Shiner Lindsey Frizzell ❝ ❝ In 1996, when Chuck died, I was crushed. I When Chuck died, we were not able to deal had no real way of expressing my emotions. with our feelings as his friends and classmates. When we stared writing Chuck's "Freebird" book, When we learned that Chuck was an organ I started to feel better and it helped me feel a donor, we were very puzzled. But through our little more comfortable about his death. I know learning and experiences, we’re now educated on he gave life to people and that would make my organ donation and the impact it makes. friend Freebird so proud. I don't think Chuck will ever die and that really makes me feel better Our book about Chuck gives a picture to each ❞ and every person who reads it to know how great about death and love and the gift of life. the gift of life is. I am proud to have helped with such a wonderful piece of work.❞ Autumn Martin Emily Nash ❝I was very shocked with Chuck’s sudden death. It was the first time that someone so ❝In the summer when I was in seventh grade, special to our class left us so soon. We talked going into the eighth grade, a close friend of about Chuck as a hero and kept his memory mine died from an aneurysm. After he died, his alive. It also brought back memories and mother chose to donate his organs, and since questions that I had about my older brother then his friends and I worked writing a book Joshua. Putting the book together made me about him called "Freebird." This year when we, understand the importance of organ donation. I Chuck's friends, graduate, we will think of him am so thankful to see this book published and and be happy, not sad, because he gave life to to have been a part of it. Freebird and his book ❞ T others instead of just dying. will live in my heart forever.❞ C

Transplant Chronicles, Vol. 8, No. 3 7 Choice — Buy a skier that allows separate keeping fit adjustments for upper and lower body continued from page 4 resistance. STAIR CLIMBER ✏To use it, set the seat so that your knee is only Why Buy? slightly bent at its lowest point. You can get an intense workout without ✏Use pedal clips to help you to push and pull exposing your legs to severe impact. the pedals. Choice — Some models have linked pedals in ROWING MACHINE which pressing down on one forces the other one Why Buy? up. Unlinked models provide a more natural Proper rowing gets 75 percent of its force from rhythm. the legs, although it appears to be upper body. EXERCISE RIDER However, it is difficult to read or watch TV Why Buy? when rowing. This machine provides a combination of Choice — There are two types, hydraulic and rowing and leg pressing movements, offering a wind resistance. The latter has a more natural total body workout. The average person should feel. get a good workout on the rider, but highly fit people probably won’t get a high-intensity ride. The seat should move back and forth freely, and there should be uniform tension throughout Physical Fitness is fundamental in creating a the movement. strong mind and feeling empowered.

CROSS COUNTRY SKI MACHINE T In Health & Happiness! C Why Buy? This machine engages the upper and lower body muscles more vigorously than any other Vanessa A. Underwood, ACSM, AFAA, is a machine. fitness trainer at Wellness Consultant, and a ✏You burn more calories per minute. motivational speaker. Two-time transplant ✏The impact forces to the body are low. recipient.

A Donor Family Writes an Open Letter to Transplant Recipients

Dear Transplant our 18-year-old daughter would recover Recipient: from the injuries she suffered in an automobile accident. Despite the heroic As a transplant recipient efforts of the entire medical staff, there was you have so much to deal to be no miracle that night. That dark July with. In addition to the night in 1994, Melissa was declared brain normal inconveniences dead. Shortly thereafter, we were from major surgery, you approached about organ and tissue Melissa Norquist must now also contend donation. The decision to donate was not as with a new regimen of difficult to make as you might think. We medications required to ward off rejection. chose to donate for two reasons. First, we You may also be dealing with another major had agreed on this as a result of a family issue that has nothing to do with the actual discussion a few months earlier, so we know surgery or post-operative care. Many of the that is what Melissa wanted us to do. transplant recipients we have met tell us Second, we agreed because we knew that that they struggle with the concept that there were people like you in such a someone "had to die" so that they could live. desperate need. We felt that if one family If you have ever experienced these feelings, could be spared the pain that we had just we hope the following words will put your endured, then Melissa would not have died T mind at ease. in vain. C from her parents, Seven years ago we spent a torturous night Patti and Mark Norquist in a local hospital hoping against hope that

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

From the editors of Transplant News Congress passes transplant legislation affecting OPOs, children; NOTA action on hold until next year By Jim Warren, editor and publisher

Despite the failure of Congress once again to UNOS had signed a new contract to administer reauthorize the National Organ Transplant Act the Organ Procurement and Transplantation (NOTA), last minute maneuvering did result in the Network (OPTN). That contract which contained a passage of two bills of importance to organ provisions requiring organs to be shared on the procurement organizations (OPOs) and to children basis of medical urgency, not geographical waiting for transplants. location. The Organ Procurement Certification Act of By signing the contract UNOS, legislation or 2000 imposes a moratorium on the Health Care lawsuits aimed at overturning the HHS regulation, Financing Administration's (HCFA) current implemented on March 16, are considered much recertification process and the use of population- less likely. “We would have liked to have had a based performance measures. The immediate bill, but the contract goes a long way to ensure a beneficiaries of the bill, which was passed on fairer transplant system in the future,” an HHS October 27 as part of the Public Health spokesperson said. Improvement Act of 2000, were three OPOs due to Organ Procurement Certification Act of 2000 be decertified by HCFA, the Arkansas Regional Organ Recovery Agency (ARORA) in Little Rock; The legislation was co-sponsored by Senators the Northeast OPO and Tissue Bank in Hartford, Susan Collins (R-ME), Christopher Dodd (D-CT) CT; and Lifelink of Puerto Rico. and others contains the following provisions in addition to the moratorium: The Pediatric Organ Transplantation Improvement Act of 2000 increases children’s ✦ requires that the certification of qualified OPOs access to organs for transplantation. The act was remain in place through January 1, 2002, for contained in the Pediatric Organ Transplantation those OPOs that were certified as of January 1, Improvement Act of 2000 spearheaded by 2000, and that meet other qualification Representative Diana DeGette (D-CO). requirements apart from the current performance standards; A last-minute effort to reach a compromise ✦ requires the Secretary of HHS to promulgate between the House version of NOTA and Senate new rules governing OPO recertification by version failed in mid-October when the House January 1, 2002. The rules are to rely on the refused to accept a counter-offer to its proposal. outcome and process performance measures The House bill “championed by Representative based on evidence of organ donor potential and Thomas Bliley, Jr. (R-VA) “was heavily tilted other relevant factors, and recertification for towards the United Network for Organ Sharing OPOs will be required until they are (UNOS) and would have given UNOS significant promulgated; new authority over setting US transplant policy. ✦ provides for the filing and approve of a corrective action plan by an OPO that fails to The Senate compromise authored by Senators meet the standards, a grace period to permit a Bill Frist (R-TN) and Edward Kennedy (R-MA) corrective plan, and opportunity to appeal a ”retained the authority of the Department of decertification, and a four-year certification Health and Human Services (HHS) to set policy cycle. but created a Scientific Advisory Committee on Transplantation to oversee disputes.” Pediatric Organ Transplantation Improvement Act of 2000 Congress has not passed NOTA legislation since 1990, despite the fact the program is supposed to The bill was part of the Beneficiary Improve- be reauthorized every three years. The failure to ments and Protection Act (BIPA). The bill (HR pass the legislation became less important to HHS 4008) requires the OPTN to: (1) recognize the with the announcement in early October that differences in health and organ transplantation Transplant Chronicles, Vol. 8, No. 3 9 issues between children (individuals under the age patients who have failed TPN and 2/3 are done in of 18) and adults and adopt criteria, policies, and pediatric patients who do not qualify for Medicare, procedures that address children’s unique health according to the HCFA spokesperson. In its care needs; and (2) carry out studies and demons- decision memo, HCFA also pointed out that only tration projects to improve procedures for organ 439 total intestinal transplants have been donation procurement and allocation. The bill performed in the US as of October 2000. also requires the Secretary of HHS to study and report to congress on the costs of immunosup- The long-term impact of the decision could be pressive drugs provided to children prior to huge however, because most state Medicaid and transplantation and the extent to which health other third-party payers usually follow Medicare plans and health insurance cover the costs, reimbursement guidelines. including recommendations on issues particular to the special health and transplantation needs of “While these procedures have been approved by children. some third-party payers at our facility and at other transplant centers in the United States... The Secretary is also required to study the without Medicare’s approval, it has been a real following: battle with insurance companies for most • The extend of denial of organs to be released patients,” said Kareem Abu-Elmagd, MD, director for transplant by coroners and medical of intestinal transplantation at the University of examiners; Pittsburgh Medical Center’s (UPMC) Thomas E. • The special growth and developmental issues Starzl Transplantation Institute. The procedures that children have pre- and post-organ have also been recognized by European and transplantation; and Canadian governments as standard procedures • Other issued that are particular to the special and eligible for reimbursement, he said. health and transplantation needs of children. HCFA noted that the Institute made the request HCFA announces Medicare will begin covering for coverage on June 29, 1999. In their appeal for intestinal transplants under certain conditions coverage, UPMC reported a 72%, one-year patient After 15 months of intense analysis, the Health survival rate and a five-year survival rate of 52%, Care Financing Administration (HCFA) announced figures that are comparable to lung that for the first time Medicare will cover all types transplantation, which has been covered by of intestinal transplants. The coverage is Medicare since 1995. UPMC said to date it has specifically for patients with irreversible intestinal performed 160 transplants in 150 patients with failure who have certain life-threatening irreversible intestinal failure. complications from long-term intravenous nutrition, commonly referred to as total parental There are three ways to transplant the small nutrition (TPN). intestine, according to UPMC: (1) alone, (2) in combination with the liver, or (3) in combination Under the criteria released by HCFA through its with the liver, pancreas and stomach. The website on October 4, three US hospitals are majority of patients at UPMC required intestinal known to qualify for Medicare reimbursement for transplants because of short-gut syndrome, the performing the procedure, however there could be loss of more the 70% of the intestine due to others. They include the University of Miami, trauma, surgery or disease. Miami, FL; the University of Nebraska Medical Center, Omaha; and the Pittsburgh Medical In its decision memo, HCFA pointed out that Center, Pittsburgh, PA. intestinal transplantation is a high-risk procedure and can only be considered as “reasonable and HCFA’s criteria for the approved centers include necessary when it is a procedure of last resort.” an annual volume of at least 10 intestinal transplants and a one-year actuarial survival rate of at “Intestinal transplantation should be reserved least 65%. The agency determined the criteria only for patients with life-threatening complica- after assessment of survival rates and cost tions from TPN who are expected to die without effectiveness. transplantation,” HCFA said. “Therefore, we are The number of patients affected by the limiting Medicare coverage of intestinal transplan- Medicare decision is small. Only 700 intestine tation only to patients who have failed TPN.” transplants have been performed worldwide on

10 Transplant Chronicles, Vol. 8, No. 3 Patients with intestinal failure must be lives of the transplants were 12.5 years and 8.6 sustained nutritionally with TPN. Unfortunately, years, respectively." liver failure often results after long-term use of TPN which leads to the need for a life-saving After adjusting for the effects of demographic combined liver and intestine transplant in some characteristics, at 10 years, the overall rates of patients. graft survival and the rates of functional-graft survival (with data censored on patients who died HCFA said Medicare will cover intestinal with a functioning graft) were 10% and 11% transplantation only in the following clinical higher, respectively, for HLA-matched transplants situations when TPN fails: than for HLA-mismatched transplants, the researchers reported. Among 3,562 pairs of Impending or overt liver failure due to TPN kidneys, HLA-matched transplants had higher induced liver injury; *Thrombosis of the major rates of survival, a lower incidence of episodes of central venous channels; jugular subslavian, and rejection, and a reduced risk of loss due to femoral veins; *Frequent line infection and sepsis; rejection. and *Frequent episodes of severe dehydration despite intravenous fluid supplement in addition “Before kidney-sharing program was initiated, to TPN. only 2% of transplants were HLA-matched, the investigators wrote. "After the program was No other transplant procedures are presently initiated, 5% of kidneys were transplanted in HLA- being considered for Medicare coverage, HCFA's matched recipients with use of the six-antigen spokesperson said. matching criteria. Use of the phenotypic criteria increased the percentage to 7%, and use of the The Medicare coverage notice can be found at no-mismatch criteria increased it to 13%. The the following Web site address: survival rate of HLA-matched kidney transplants http://www.hcfa.gov/quality/8b3-gl.htm was similar regardless of the criteria by which they were selected.” The percentage of HLA- Increased graft survival of HLA-matched kidney matched transplants could be further increased, transplants supports national sharing, study finds according to the authors, by extending the organ- sharing network to include Canada, as many A superior graft outcome with little increase in Canadian cities are close to those in the United the duration of cold ischemia justifies national States. sharing of HLA-matched kidney transplants, according to the results of a study published in Since UNOS established the national kidney- the October 12th issue of the New England sharing program in 1987, many have argued that Journal of Medicine. the resultant increased duration of cold ischemia would offset the benefit of shipping kidneys to Steven Takemoto, MD, and colleagues from the HLA-matched patients. Indeed, in their analysis of University of California at Los Angeles (UCLA) nearly 64,000 cadaveric renal transplants reported compared the rates of rejection and actuarial graft to UNOS between 1990 and 1998, researchers at survival for 7,614 HLA-matched and 81,364 HLA- the University of California at San Francisco mismatched cadaveric kidney transplants reported (UCSF) recently reported that recipients of kidneys to UNOS between October 1987, when a program with zero mismatches but with cold ischemic time for national sharing of HLA-matched kidneys was greater than 36 hours had no survival advantage launched, and September 1999. To assess the over patients with mismatched kidneys kept cold effects of the extended period of ischemia for less than 24 hours (Transplant News, associated with shipping HLA-matched kidneys, September 24, 2000 page 8). In the UCLA study, the investigators identified 3,562 pairs of more than 83% of the HLA-matched kidneys in cadaveric kidneys in which one kidney went to an the UCLA study were shipped to distant HLA-matched recipient and the other was transplant centers, whereas 77% of the HLA- transplanted into an HLA-mismatched recipient. mismatched kidneys were shipped within the local service area of the organ procurement "The estimated 10-year rate of graft survival was organization. Nonetheless, the mean duration of 52% for HLA-matched transplants, as compared cold ischemia was comparable—23 hours for with 37% for HLA-matched transplants,” wrote patients given HLA-matched kidneys and 22 hours Takemoto and co-authors. "The estimated half- for patients who received HLA-mismatched

Transplant Chronicles, Vol. 8, No. 3 11 kidneys—and well within the cut-off point set by The financial safety net will be in the form of the UCSF investigators. $250,000 life, disability and medical insurance to cover complications which might arise to affect the During the study period, the researchers noted living related or unrelated donor. that the proportion of kidneys from older cadaveric donors steadily increased in response to SEOPF will offer the LODN to all kidney transplant the growing demand for transplants. In 1988, 6% centers in the US. of transplanted cadaveric kidneys were from “We are hoping that all transplant centers donors over age 55 years; that fraction increased performing living kidney transplants will particip- to 13% by 1997. Donor age had a significant effect ate in our program” Armata told Transplant News. on 10-year graft survival among recipients of HLA- “The criteria for donations are the same as the matched kidneys: 68% in patients whose donor American Society of Transplant Physicians.” was age 15 years or younger, 32% in those whose donor was older than 55 years. Because an In early November, the United Network for estimated 70% of kidneys from donors older than Organ Sharing (UNOS) reported that more than 60 years of age will be lost within 10 years of 72,000 Americans were on the transplant waiting transplantation, the authors recommended that list. "young recipients should not undergo transplantation with organs from older donors, even if they Thumb-sized Jarvik 2000 heart successfully are HLA-matched." implanted permanently into 61-year-old man Organ donation in the US increased 4% in first half A thumb-sized intraventricular assist device has of 2000 compared to 1999, AOPO, HHS report been permanently implanted into a 61-year-old Organ donation in the US increased by about man with end-stage heart failure with initial 4% in the first half of 2000 compared to the first success, UK researchers reported in the six months of 1999, according to the Department September. of Health and Human Services (HHS) and Associ- Stephen Westaby, MD, from the John Radcliffe ation of Organ Procurement Organizations (AOPO). Hospital in Oxford, UK and colleagues implanted According to data gathered by AOPO through the Jarvik 2000 heart into the patient’s left monthly reports from the nation's 59 organ ventricle in June as part of a prospective clinical procurement organizations (OPOs), the number of trial that eventually will enroll six patients with organ donors through the first 6 months of 2,000 cardiomyopathy. A team from the Texas Heart was 2,978, compared to 2,875 in 1999 for the Institute in Houston, who had implanted the same time period. device in three patients this summer as a bridge to heart transplantation, flew to Britain to SEOPF launches Living Organ Donor Network participate in the 14-hour operation. designed to track health status of living donors The tiny, silent, titanium impeller pump is The South-Eastern Organ Procurement powered by a cable that passes from the device to Foundation (SEOPF) has launched a Living Organ the chest, then through the neck to a pedestal Donor Network (LODN) that is designed to provide screwed into the skull behind the ear. The living persons considering donating a kidney to a unobtrusive pedestal, based on cochlear implant relative, friend or relative the opportunity to have technology, transmits the cable to an external their future health status tracked and protected. portable controller and battery, both of which are The LODN will consist of two parts – a living donor worn on the patient’s belt. The controller has a registry and financial safety net to help cover single dial, enabling the patient to regulate the unexpected financial costs. impeller speed according to activity level. The living donor registry will follow donors After six weeks of use, the researchers found indefinitely to assess long term outcomes of being that the Jarvik 2000 sustained the patient’s a kidney donor, explained Tom Armata, SEOPF circulation and improved exercise tolerance as executive director. The registry will combine well as cardiac and end-organ function, resolving existing data on the donor and recipient compiled his symptoms of heart failure. No significant by the United Network for Organ Sharing (UNOS) hemolysis or device-related complications T with additional data collected at the time of occurred. C donation and at 3, 6, and 12-month follow-ups with the donor.

12 Transplant Chronicles, Vol. 8, No. 3 Keeping In Touch By Maurie Ferriter F or most people, getting a transplant means sneaky beginnings. If caught early, in most a new lease on life. The days of being sick are cases, they can be managed and not present a replaced with days, months and sometimes years major threat to a transplant recipient’s general of feeling better, being more active and returning health or the life of the transplanted organ. to as normal a lifestyle as possible. Clinic visits, blood tests and medical follow-up procedures A communication issue for long-term tend to get farther and farther apart. recipients is centered on when to pick up the telephone and call the medical team who is The main responsibility we have is taking our following them. In the early days and months medications on a regular basis. As contact with after transplant, most people do not think twice the medical team decreases, we learn to assume about calling when they have a fever or a cold or the role of caretaker and start monitoring our when things just do not seem right. After all, own health status. Some people do this as part of most transplant programs encourage us to call a strict daily routine that has been the same them no matter how small or trivial the situation since being discharged from the hospital. Others seems to be at the time. As the transplanted drift away from that routine and do not pay as organ’s time line gets longer, some people feel much attention to their general health. Either of they can answer their own problems. They don’t these methods works fine, as long as things are want to bother the health care team, or they feel stable and no problems arise. As most of us learn like they have been through the situation before over time, this is not the norm. Many people and nothing major came of it, and they do plan for the transplant to be problem-free not make the call. How the team responds and to last forever. to calls can sometimes discourage calling. If the standard response of the team is to Most long-term recipients will attest to tell the person to go to the emergency the fact that things do not always go as room, many people will not want to go planned. Being on anti-rejection drugs through that experience for what they brings up an endless list of possible see as a minor fever or cold complications we may have to deal symptoms. You should consider with. For people who have continued to how serious the symptoms are and follow the routine of taking their blood decide if you need to contact your pressure and temperature, recording team. their weight and keeping lab appointments as scheduled, it may be easier to No matter how we deal with the day-to-day detect the early warning signs of problems before situations that all transplant recipients have, we they become a major crisis. These daily must be in touch with our health issues enough maintenance items may seem small and not to realize when something is really wrong and important after years of stable medical history, not hesitate to take appropriate action quickly. but can play a big role in heading off a possible Even though we know our own bodies better disaster. than anyone else, we are not doctors or nurses who are trained to recognize early signs of Many serious medical complications of potential problems. Some of the worst cases of transplantation have early signs and symptoms rejection have no immediate outward symptoms. that outwardly seem not to be connected with the Keeping in touch with your health care team on transplant. If we write these off to things like the a regular basis increases the chance that major flu, allergies or the common cold, we could be complications can be detected and treated before taking a big risk with our long-term health. your transplant is in jeopardy of being T Hepatitis, CMV infection and pneumonia are just permanently damaged or lost. C some examples of complications that have slow,

Transplant Chronicles, Vol. 8, No. 3 13 eating right Just a Pinch? By Kimberlee Rast, RD

S alt. For most transplant patients, even a foods (canned, boxed, frozen foods) are in the pinch is too much. By limiting salt consumption, aisles and the less processed foods are on the you can decrease fluid retention and blood perimeter (fresh meats, vegetables, fruits, milk, pressure. Salt is composed of 40 percent sodium breads). and 60 percent chloride. The fact is sodium, alone, is the culprit. Sodium will act like a Try to limit your sodium to less than 3000 mg a sponge and hold water in the body. Extra fluid in day. Just one teaspoon of salt contains 2400 mg the body causes edema and increased blood of sodium! So remember the old saying but with pressure. a new ending "A pinch is all it takes" to give you T problems. C An average American acquires 10 Homemade Herb & Spice Blends percent of ingested sodium by adding salt to food, 10 percent from what naturally occurs in foods and 80 Season-All (mix for meats and vegetables) percent from eating processed foods. 1 tsp. Basil 1 tsp. Parsley Processed food is by far the biggest 1 tsp. Marjoram 1 tsp. Savory source of sodium. Salt has been and 1 tsp. Thyme 1 tsp. Black pepper still is the most widely used of all 1 tsp. Oregano 1/4 tsp. Nutmeg food preservatives. 1 tsp. Mace 1/4 tsp. Cayenne 1 tsp. Ground cloves Salt was the first food preservative. Even in ancient times (before refrigeration) salt was considered power. Salt-preserved food would last All-Purpose Spice Blend

longer and armies could fight longer, thus 5 tsp. Onion powder 1 1/4 tsp. Thyme winning wars. In general, the more processed a 2 1/2 tsp. Paprika 1/4 tsp. Celery seed food is, the higher the sodium content. For 1/2 tsp. Ground white 2 1/2 tsp. Garlic powder instance, old-fashioned cooked oatmeal has 1 mg or black pepper of sodium per serving, whereas instant has 285 2 1/2 tsp. Mustard mg per serving powder

To Reduce the Amount of Sodium in Herb Seasoning Blend Your Diet: 2 tbsp. Dill weed or basil 1 tsp. Celery seed ☞ Do not add salt to your food at the table or 2 tbsp. Onion powder 1 1/4 tsp. Grated lemon during cooking. Flavor your foods with herbs and 1 tsp. Crushed oregano peel (dried) spices. In most recipes, you can omit the salt leaves 1/16 tsp. Black pepper completely or add only half the amount called for without changing the quality or the taste of the item (the exception is baked products). Spicy Blend Experiment with recipes and you will find you 2 tbsp. Crushed savory 1 1/2 tsp. Cumin can reduce the salt and have an even better 1 tbsp. Powdered 1 1/4 tsp. Cumin tasting meal. mustard 1 1/4 tsp. Black pepper 2 1/2 tsp. Onion powder 1/2 tsp. Garlic powder ☞ Read labels and decrease your intake of 1 1/2 tsp. Curry powder processed foods. Become a sodium sleuth. A good general rule in the grocery store is to stay on the outside edge of the store. Most processed

14 Transplant Chronicles, Vol. 8, No. 3 medical beat Complications Following Organ Transplantation: The Need for Careful Medical Follow-up By Ira D. Davis, MD

ver the past two decades, patient and High blood pressure is another problem transplantO organ survival have improved commonly experienced by transplant recipients. dramatically to the point that quality of life issues It may be due to side effects from medications are now the primary focus when monitoring a such as prednisone, cyclosporine and tacrolimus, patient in the post-transplant period. However, or poor kidney function. several potential medical problems may arise in the post-transplant period that may have a Up to 80 percent of organ transplant recipients negative impact on quality of life. These include have elevated blood levels of cholesterol or infection, cancer, high blood pressure, elevated triglycerides, referred to as hyperlipidemia. These blood lipid levels, heart disease and diabetes. In problems are of major concern because they addition to these problems, delayed growth needs increase the risk of developing serious heart to be addressed in the pediatric population. disease and hardening of the arteries in the heart and vessels of the legs. ■ THE PROBLEMS Weakening of the immune system with anti- Organ transplant recipients are at an rejection medications also predisposes increased risk for numerous infections organ transplant recipients to several due to the effects of anti-rejection drugs forms of cancer that occur at a higher such as prednisone, azathioprine rate compared to the general population. (Imuran), cyclosporine, tacrolimus Skin and lip cancer are the most (Prograf or FK506), sirolimus common forms of cancer seen in (Rapamune), and mycophenolate transplant recipients. Cancers of the mofetil (CellCept) on the immune blood, liver, muscle and female genital system. These drugs, referred to as organs also occur in transplant immunosuppressive agents, block the patients. Cancer of the blood is body’s immune system in order to prevent typically related to a new EBV infection rejection and blunt the ability to fight off in transplant recipients, while liver tumors may infections due to bacteria, viruses and other develop as a complication from Hepatitis B infectious agents. Although transplant recipients infection. sometimes have less common infections, they primarily have infections such as the common Diabetes mellitus occurs in approximately 10 cold, influenza ("the flu"), diarrhea-causing viruses percent of adults and children following kidney and sexually transmitted diseases. transplantation and increases the rate of rejection. It usually occurs within 4-6 months Urinary tract infections (UTI’s) are the most following transplantation and is seen frequently in common bacterial infection during the initial three African Americans and Hispanics. Diabetes months following a kidney transplant. People mellitus in the post-transplant population is with UTI’s may have no complaints or they may either due to an inability to respond to insulin, have a fever, stomach pain, urination discomfort, which is a hormone that normally lowers the or feel very weak and run down. Thanks to better blood sugar level, or decreased insulin methods of detecting these viruses at earlier production. Diabetes may result from side effects stages, before serious illness develops, and to medications such as prednisone, cyclosporine improved therapies in preventing serious disease, or tacrolimus. Genetic factors and obesity also fewer problems from viral infections such as predispose transplant recipients to diabetes. cytomegalovirus (CMV) and Epstein-Barr virus (EBV), which may cause fever, weakness, pneumonia and liver problems, occur today. Continued on page 16

Transplant Chronicles, Vol. 8, No. 3 15 The Greatest Gift of All I made a difference Even at my end. By Patsy Roeme Lakeland Although I don’t know you Dedicated to her father waiting for a liver transplant I’ve made a new friend. I changed someone’s destiny. When my days have passed They can now go on living. And come to an end And it was so simple What will I leave behind? It was all in the giving. Of course they’ll have their memories of me And material things of each kind. It’s a wonderful feeling To know I have something more But did I give the most of myself to give When I was part of the living? That when my end approaches I guess if I didn’t, there’s still Someone else has a chance to live. that chance. When I’m gone I can still keep giving. I’m glad I’ve made this choice in my life Before my time grows near. The most precious gift you could remember me by My soul will go to heaven someday Would be that I helped another. But my organs will stay here. T I gave the gift of life to someone, C A child, a spouse, father or mother.

suggest growth hormone is a safe and effective medical beat drug in kidney transplant recipients with short continued from page 15 stature, further long-term studies are needed before this drug becomes an accepted standard of Diabetes also increases patient mortality, therapy for these patients. primarily as a result of increased infections. Other complications from long-term diabetes What can you do? mellitus include nerve injury, eye disease, heart disease, and poor kidney function. Transplant can take recipients several measures to ensure optimal health and help Growth in children following transplantation is reduce their chance of having a serious adverse often delayed during the initial 12 months. This outcome. These include: appears to be due primarily to high doses of glucocorticoids such as prednisone. Although ✏ Contact your primary doctor when you are ill children undergoing liver and heart transplanta- or have a fever above 101oF. tion often catch up in growth following their ✏ Visit your transplant doctor regularly. transplant, children with kidney transplants often ✏ Eat a balanced diet low in salt and fat. do not. Long-term studies in kidney transplant ✏ Perform regular aerobic exercises for 20 recipients demonstrate that children receiving a minutes, 4 times per week. transplant before age 1 show the greatest ✏ Stop smoking. improvement in growth during the next five years. ✏ Monitor your blood pressure at home. Children who receive their transplant after age 5 ✏ Get regular skin exams and use sunscreen fail to show significant improvement in their with a high sunblock rating. growth rate. ✏ Female transplant recipients should receive regular pelvic exams. Strategies used to improve growth in children following a kidney transplant include low-dose In addition, studies are needed to evaluate the prednisone, alternate-day steroid withdrawal or safety of reducing the doses of cyclosporine and daily injections of human growth hormone, a tacrolimus with the addition of newer drugs such substance that is responsible for normal growth as sirolimus and to assess the safety of steroid T of bone and cartilage. Although several studies withdrawal. C

16 Transplant Chronicles, Vol 8, No. 3 Registry Continues to Follow Post-Transplant Pregnancy Outcomes Update from the National Transplantation Pregnancy Registry By Lisa A. Coscia, BSN, RN, Lydia Z. Philips, BSN, RN, Carolyn H. McGrory, MS, RN, Michael J. Moritz, MD, and Vincent T. Armenti, MD, PhD T he National Transplantation Pregnancy ■ What about the use of mycophenolate mofetil Registry (NTPR) was established at Thomas (CellCept, MMF) during pregnancy? Jefferson University in Philadelphia in 1991 to There is a concern based on animal studies study the outcomes of pregnancies in female that MMF could increase the risk of a birth transplant recipients or in which the father is a defect in newborns of mothers taking this transplant recipient. To date the NTPR has medication during pregnancy. The NTPR has received reports on just over 2060 post reordered seven pregnancies with use of MMF transplant pregnancies. during pregnancy by female kidney recipients, resulting in four babies with no birth defects and Based on their experience with the registry, three miscarriages. No apparent problems have NTPR staff offer the following answers to the been reported to the NTPR in male recipients most commonly asked questions: fathering children while taking MMF. Thirty- ■ Can I become pregnant after transplant? eight male recipients taking MMF fathered Yes, following a successful transplant, children with no birth defects reported. After a recipients should be aware that they can become discussion with the transplant team, the pregnant soon after transplant and appropriate recipient taking MMF must weigh the risks and birth control measures should be implemented. benefits. (See below.) ■ Are there any particular problems among the ■ Is pregnancy safe for female transplant newborns? recipients? For female recipients, there is at least about a Remember that "safe" involves three outcomes: three times greater than normal risk of having a the mother, the baby and the transplanted organ. baby who is premature (less than 37 weeks In the majority of female recipients, pregnancy gestation) or low birthweight (less than 2500 does not cause excessive problems, especially if grams, about five and one half pounds). There function of the transplanted organ is stable prior has, however, been no pattern of birth defects to pregnancy. A small percentage of recipients reported in the newborn. will develop rejection, graft dysfunction and/or ■ graft loss that might be related to the pregnancy. How are the children developing? Typically, the children are reported healthy ■ How long should I wait after my transplant to and developing well, although occasional health try becoming pregnant? or development problems have occurred. It makes sense to wait one to two years after ■ the transplant to ensure that the function of the Is breast-feeding advisable? transplanted organ is adequate and stable, and The American Academy of Pediatrics has to allow for the immunosuppressive medications advised against breast-feeding, although a small to be at relatively low, stable, maintenance levels. number of recipients in the registry have chosen Recipients who became pregnant less than one to breast-feed with no specific problems reported year after a transplant have had favorable in their infants. The potential risk of ingesting outcomes, although the risks may be greater. immunosuppressives via breast milk must outweigh the benefits of breast-feeding in this ■ Do immunosuppressive medications need to potentially high-risk infant population. be adjusted and/or specific drug levels checked? ■ What about more than one pregnancy? Immunosuppressive medications may have to Some women have reported additional be adjusted, with close follow-up of levels during pregnancies to the registry. As in first pregnancy. Continued on page 20

Transplant Chronicles, Vol. 8, No.3 17 The Gift of L❤ve and Life By Jill W. Bowers

O n February 13, 1993, I married a wonderful Celebrating our kidney anniversary is no man, George Bowers. Little did I know that five longer just a June 3 event. We celebrate our and a half years later, we would celebrate more success everyday. Exercising, working out and than a wedding anniversary. This "other" eating healthy are priorities for us. Each anniversary would be my successful kidney summer we still ride approximately 500 miles in transplant. RAGBRAI (Register’s Annual Great Bike Ride Across Iowa). Although I was able to compete The other anniversary actually began before and win medals in badminton and biking at the our marriage, when I was diagnosed with kidney recent National Kidney Foundation’s 2000 U.S. disease in 1992. Despite my following a special Transplant Games in Orlando, my husband diet, an exercise regime and daily blood pressure received the best medal, the Gift of Life Donor medication, my kidney function continued to Medal. deteriorate. I can still hear the doctor’s Along with words in December of remaining healthy, 1997: "You will need a we are also kidney transplant committed to being within a year and you role models for other will need a living people in need of donor." transplantation. Giving our support to I was in denial, but those in need brings then came the such happiness for anemia, exhaustion both of us. We enjoy and constant fatigue being volunteers for that often accompany the Donor Network of kidney failure. I soon Arizona. As guest began the pre- speakers, we share transplant testing. our good news, show My world started to the positive results of crumble again when the Gift of Life and none of my family encourage future members could be my recipients. We feel a donors. Then came the Jill and George Bowers. A special Gift of sense of pride and miracle! My husband Love. accomplishment could be my donor and when others join our most important, he offered to give me the gift of donor/transplant community. life. Our daily lives have taken a new perspective On June 3, 1998, George donated one of his since our transplant. We appreciate our time kidneys to me! Within five days of the together, share our happiness and take time for surgery, we were both home from the hospital, just us. As the recipient, I realize that I am one recuperating under the able care of our family of the lucky ones. I am blessed with the gifts of and friends. Their care and support still love and life all in one package from my best T remains a wonderful part of our lives. friend, my husband. C

18 Transplant Chronicles, Vol. 8, No. 3 ask the pharmacist

An Overview of Sirolimus (Rapamune®) By Kuldip Patel, PharmD Candidate, University of Toledo

S irolimus (Rapamune) is the latest immuno- Rapamune with changes in diet and exercise. For suppressive drug to be approved by the Food and patients who do not respond to lifestyle changes, Drug Administration (FDA) for use in the drug therapy has been used successfully. prevention of kidney transplant rejection. The Consult your transplant doctor and team for the drug has a chemical structure that is similar to best approach to management. tacrolimus (Prograf®), but acts in an entirely different way and is Rapamune is only available in liquid single-use associated with some unique side pouches containing 1 ml, 2 ml and 5 ml each and effects and drug interactions. multiple dose bottles containing 60 ml and 150 Clinical trials conducted in the ml. It is expected that the manufacturer will gain United States and Europe approval from the FDA to market a tablet form of evaluating the use of Rapamune Rapamune within the next year. Rapamune must in combination with cyclos- be kept refrigerated and protected from light porine and prednisone in kidney when not in use. transplant recipients have been promising. As a result, investi- “Researchers will further define gators have been prompted to study the effects of Rapamune in combination with other immuno- the role of Rapamune in the suppressive drugs and other types of transplanted organs. coming years and propose ways

Unlike cyclosporine and tacrolimus, which to optimize its effectiveness prevent your body from reacting to the transplant, Rapamune "stalls the engine," disabling the while reducing and managing body’s ability to reject to the transplanted organ. Because of this, doctors may be able to prescribe unwanted side effects.” lower doses of cyclosporine when it is combined with Rapamune, minimizing unwanted side effects such as kidney toxicity, hypertension, Rapamune is a welcome addition to the line of electrolyte disturbances, unwanted hair growth, drugs available to prevent rejection in organ tremors and high blood sugar, etc. transplant recipients. It has a unique mechanism of therapeutic action, providing potential The side effects patients on Rapamune most advantages when taken in combination with other frequently encounter include high cholesterol and anti-rejection drugs. Rapamune has some side triglycerides, decreased blood counts (white blood effects, but is not toxic to the kidney. Drug cells, platelets, red blood cells), impaired wound interactions that occur with Rapamune are healing, diarrhea, nausea and headache. These similar to those seen with cyclosporine and effects may increase with higher doses of tacrolimus. Researchers will further define the Rapamune. In clinical trials, transplant role of Rapamune in the coming years and recipients have been able to lower elevated propose ways to optimize its effectiveness while T cholesterol and triglyceride levels related to reducing and managing unwanted side effects. C

Transplant Chronicles, Vol. 8, No. 3 19 Post-Transplant… ■ Are there some recipients who are at higher risk for complications during pregnancy? continued from page 17 Yes, recipients with deteriorating graft function pregnancies, recipients should have stable prior to pregnancy, such as liver recipients with transplant function between their pregnancies. recurrent hepatitis C, may be at an increased risk. Pre-pregnancy counseling is especially advisable for them. ■ What about male recipients? Overall, for male recipients who become fathers the outcomes are generally good, and the frequency of prematurity and birth defects in the newborns appears to be similar to that of the general population. The NTPR acknowledges the cooperation of the transplant recipients and over 200 centers nationawide that have contributed both their time and information to the registry. To participate in the NTPR, recipients are requested to complete a single page questionnaire, followed by a telephone interview and continuing follow- up. To report a pregnancy or request further information, please contact the NTPR toll free at 1-877-955-NTPR (6877), fax (215) 923-1420 or email [email protected]. A healthy Elizabeth Alexis Carlin was born on The NTPR is supported by grants from November 13, 2000 to Alex and Faith Carlin. Novartis Pharmaceuticals Corp., Fujisawa T Faith had a kidney and pancreas transplant Healthcare, Inc., and Roche Laboratories Inc. C on July 7, 1991.

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