Transplant Chronicles 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 Sign Me Up... FOR A FREE MEMBERSHIP IN THE TRANSACTION COUNCIL to receive all of the benefits of membership: a membership card and pin; quarterly issues of TransAction Council Connection membership update and Transplant Chronicles newsletter; information on transplant athletic programs, a voice in legislative and public policy issues; participation in NKF educational programs and activities. Just fill out the form and mail it to the transAction Council, National Kidney Foundation, 30 East 33rd Street, NY, NY 10016. Name: ______________________________________________________________________________________ Address:____________________________________________________________________________________ City, State, Zip: ____________________________________________________________________________ Phone: ______________________________________ E-Mail: ______________________________________ ■ I am not interested in joining the transAction Council but would like to continue receiving Transplant Chronicles at no charge. ✃ 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.