Winter 2007 Transplant Chronicles is a Program of the National Kidney Foundation. Volume 13, Number 4 The Gift I Received By Melissa Simone ATTENTION READERS! DON'T LET THIS BE YOUR LAST ISSUE! Transplant Chronicles is publishing online with its next issue. Visit www.transplantrecipients.org or return the enclosed postcard to sign up for e-mail notifi cations. It’s quick and easy! People often ask me, “Why did you named Kelly. She was fun, com- donate a kidney to a stranger?” Maybe passionate, caring, and a little I should start at the beginning: My crazy! Kelly also had cystic fi bro- best friend in elementary school was sis. Through all her hospital visits, school absences, breathing treat- longer had the strength to walk. In all In this issue of ments, physical therapy, etc., Kelly the years Kelly and I had known each and I were inseparable. With each limi- other, I had never known her to be Transplant Chronicles tation the doctors placed on her, Kelly anything but optimistic. Cystic fi brosis proved everyone wrong and succeeded was as much a part of Kelly as the online at: www.kidney.org/recips/transaction/chronicles.cfm ✓ Editor’s Desk ............................Page 2 at all she set out to do. Kelly lived to color of her eyes. It was not a disease, celebrate her 33rd birthday, when no just a fact she accepted. ✓ Recipient Voices .........................Page 2 one expected her to live past her fi fth. ✓ Power of "Thank You" .............Page 3 One day, while instant messaging each hronicles A few years ago, after meeting a won- C other, Kelly told me she was making ✓ Heart Health ............................ Page 4 derful man and having two children, videos and scrapbooks for her chil- ✓ 29 Years After Transplant ....... Page 5 Kelly was placed on the list for a dren, as she knew in her heart that she double lung transplant. I had moved ✓ Transplant News Digest ........... Page 6 would not receive the transplant in across the country, but Kelly and I time. I sat, tears streaming down my Transplant ✓ Understanding Knee Pain ......... Page 7 kept in contact. We were so excited by face, as I tried to imagine life without the prospect of Kelly’s receiving the ✓ People Like Us! ..........................Page 8 Kelly and the monumental ordeal she transplant. Days turned into months, and her family were facing. ✓ Communication .................... Page 10 months into a year, while Kelly ✓ NKF Resources ..................... Page 11 underwent treatments and tests, and When Kelly died, I was numb. The was permanently put on oxygen. She numbness turned into anger as I ranted ✓ Balancing My Life ................ Page 12 was forced to ride a scooter to take her against the injustice of the need for small children to the park, as she no someone to die, so that others could Read the latest issue of Continued on page 9 © Copyright 2007 Published by the for transplant recipients of all organs and their families. ISSN# 1524-7635 National Kidney Foundation, Inc. 01-70-1113 Laurel Williams, editoedito r’r’ss deskdesk RN, MSN, CCTC Editor-in-Chief WE RECENTLY HAD A SEASON OF church and community, and left a deep Transplant Chronicles is published by the National MANY CELEBRATIONS: RELIGIOUS, imprint on the lives she touched. She Kidney Foundation, Inc. NATIONAL, GOVERNMENTAL, AND loved to dance the night away with her Opinions expressed in this publication do not necessarily represent the position of the National PERSONAL CELEBRATIONS. All have husband. Her grandson said she was a Kidney Foundation, Inc. their unique meanings, traditions and “babe” in her younger years. He said Volunteer Editorial Board: customs, and are often shared with fam- her memory lives on in the smile of Laurel Williams, RN, MSN, CCTC ily, friends, neighbors and guests. Not too his mother, the mischievousness of his Editor-in-Chief long ago, I was at a celebration of life—a uncle and the incredible love engulfing University of Nebraska Medical Center Omaha, NE celebration of the life of a woman I had the family. Megan A. Tichy, RD known for more than 20 years. She was It made me stop and think that maybe San Francisco, CA one of our early transplant patients—a in this busy world, we do not take Dean S. Collier, PharmD pioneer of sorts. She was a mother and University of Nebraska enough time to really know people and grandmother and lived a long, active life. friends. What would our celebrations, Omaha, NE I thought I knew her fairly well after all Jack Fassnacht or even our daily interactions, be like Chicago, IL these years. I knew she liked to paint; if we spent a few more minutes ask- she was very involved in her family and Joshua S. Goldberg, teen editor ing questions about the lives of others, Encino, CA helped her husband on their farm. I knew actively listening, recognizing and Shirley Schlessinger, MD that she had a great laugh and was always appreciating their unique talents, abili- University of Mississippi Medical Center in charge of where her treatment was Jackson, MS ties, traditions and customs? I wonder going (we usually negotiated medical if those few extra moments would Victoria L. Schieck, RN, BSN, CCTC changes and never just told her what University of Michigan Health System enrich our lives? I wonder if those Ann Arbor, MI to do). extra moments might actually ease our Debra J. Tarara, RN, BSN, CCTC stress. I wonder if those extra moments Mayo Clinic Sitting at her funeral service, listening Rochester, MN to the many stories and kind words, I would bring much more back to us than we imagine. Rebecca Hays, MSW realized that there was much more to University of Wisconsin Hospital this woman and her life than I had ever Madison, WI As Muhammad Ali said, “There are imagined. She did not just paint, she was billions of people in the world, and Chris L. Wells, PhD, PT, CCS, ATC an accomplished artist. Her pictures were University of Maryland every one of them is special. No one Baltimore, MD prominently displayed and depicted her else in the world is like you.” It is my Jim Warren, MS family and life in Nebraska. She was an New Year’s resolution that we find Transplant News accomplished musician, playing both the Baltimore, MD those extra minutes, and look for piano and organ, enjoying a wide variety what is special in others, to possibly Editorial Office: of musical styles such as country, popu- National Kidney Foundation, Inc. make the difference in their lives and 30 East 33rd Street, New York, NY 10016 lar, and church hymns. She enjoyed farm in our own. 800.622.9010, 212.889.2210 life, taking in many dogs and cats. She www.kidney.org named each one of her cows and, through We on the Editorial Board hope you Editorial Director: Cathy Paykin, MSSW the years, went through the alphabet and your families had the happiest of Executive Editor: Gigi Politoski twice naming them. She was active in her holidays and wish you a warm 2007. TC Managing Editor: Sara Kosowsky Publications Manager: James McCann Design Director: Oumaya Abi Saab let your VOICE be HEARD Constituent Council Manager: Erin Kahle What are your experiences with medication side effects? In what ways did you cope? Log on to tell us what you think! Read others’ responses...www.recipientvoices.org 2 Transplant Chronicles, Vol. 13, No. 4 The Power of Two Little Words: "THANK YOU" By Dr. Shirley Schlessinger The highlight of the conference was ($2,000–5,000) Did you meet your families and our living donors. The an open-forum discussion with six recipient? (Some said “yes”; some OPO reports outcomes of the dona- remarkable people who had each “no.”) Did you have post-operative tion to a deceased donor’s next-of-kin. donated one of their kidneys to a com- complications? (Most said “no,” some We have donor support groups across plete stranger. I had always been a “yes.”). The questioning went on and Washington state. When asked, we bit suspicious of people who call our on. The answers were thoughtful, facilitate communication from donors organ recovery organization (OPO) heartfelt and poignant, and convinced to recipients and vice-versa, with ano- and declare their desire to “donate an me that there truly are special people nymity preserved as requested. But, organ to anyone who needs it.” These in this world. When asked what the as a transplant physician, I had never calls have traditionally come to us on most rewarding part of the whole personally, actively encouraged our New Year’s Day from people highly experience was, it was somewhat sur- recipients to say “thank you.” I myself intoxicated and clearly not thinking prising to hear this answer: The thank had never said “thank you” to these quite straight. In stark contrast, the you note I got from my recipient. incredibly special people. symposium participants were not only sober, but clearly intelligent, function- I came home from that meeting with I’ve since learned that there are trans- al and service-oriented human beings. lots to think about. I’d clearly mis- plant programs that do enthusiastically We questioned them intensely: Why judged humanity. There were sane encourage their patients to say thank would you choose to undergo a major people who thought it was perfectly you. “Thank you” seems so easy to surgical procedure for someone you reasonable to donate a kidney to say, but somehow we don’t say it don’t even know? (A typical answer: anyone who might need it, and to frequently enough.