Transplant Chronicles Volume 5 A publication for transplant recipients of all organs and their families, Number 1 published by the National Kidney Foundation, Inc. When we walked inside the Writing to Your Donor Family Shrivers’ lovely home, we were greeted by a room full of Doug’s Is a Special Experience family members. It was wonderful to meet his 12-year- by Faith Taylor old daughter, Jodi. We all sat together and enjoyed watching family videos of Doug working with his father on the farm and helping Jodi find eggs during the family’s Easter egg hunt. My mother and I enjoyed hearing about the many practical jokes Doug loved to pull on his mother. I felt proud to know that my donor was such a handsome, strong and witty young man who cared about others and was such a great help to his father. And I felt blessed to meet such a Left to right: Paul Shriver, Faith Taylor, Dorothy Shriver, loving and close family. Doug’s Doug’s daughter, Jodi, and a feline friend sister, Karen, invited my family to the Shriver family picnic. “You are now a part of our M y mother, Barbara, and It was a special and unique family,” is how she put it. I recently made the three-hour experience to see where my The Shrivers have missed trip to Gettysburg, Pennsylvania, donor lived and meet the people Doug ever since he was killed in where we were warmly closest to him. When we arrived, an automobile accident in July welcomed into the home of Paul my first view was of a beautiful 1992, but they find comfort in and Dorothy Shriver, the farm with fields that went as far knowing that many lives have parents of Doug Shriver, my as my eyes could see. I thought been saved and blessed because organ donor. We spent the day of Doug working with his father he was an organ donor. with Doug’s parents and many in these fields and how much he other Shriver family members. is missed now. Continued on page 4 transAction! Transplant Chronicles is a COUNCIL Program of the National Kidney Foundation, Inc., supported by Sandoz Transplant, a division of Novartis Pharmaceuticals Corporation. National Kidney Foundation® editor's desk ✍ Transplant Chronicles National Organ and Tissue Donation Awareness Transplant Chronicles is published by Week has come and gone. It the National Kidney Foundation, Inc. is a time when I reflect on Opinions expressed in this publication do not necessarily represent the the changes that have position of the National Kidney Foundation, Inc. occurred in the area of organ Editor-in-Chief: donation during the past Beverly Kirkpatrick, LSW several years. After 17 years Philadelphia, Pennsylvania of working in the Beverly Kirkpatrick Editors: transplantation field, I still Ira D. Davis, MD Vanessa Underwood, BS, find myself filled with feelings of disappointment Cleveland, Ohio AFAA, ACE Plaistow, New Hampshire when I think about the small increase in donation Maurie Ferriter, BS Lakeland, Michigan Jim Warren, MS and sadness for the many who die while waiting for Arlington, Virginia Cheryl Jacobs, LICSW their second chance. Minneapolis, Minnesota Laurel Williams, RN, MSN Omaha, Nebraska Linda W. Moore, RD, LDN This week in Philadelphia, a nine-year-old girl Memphis, Tennessee R. Patrick Wood, MD Houston, Texas named Sarah died before a donor heart could be Teresa Shafer, RN, found. Sarah should not have been denied her MSN, CPTC second chance, nor should the many others who Ft. Worth, Texas Editorial Office: await an organ. As transplant recipients, friends National Kidney Foundation, Inc. and family, I urge you to get involved with organ 30 E. 33rd Street, New York, NY 10016 (800) 622-9010/(212) 889-2210 donation promotion so that all of the Sarahs of the http://www.kidney.org world will live on and our disappointments will Executive Editor: Editorial Director: change to joyous amazement. For more on getting Diane Goetz Gigi Politoski involved, see Robert Gruenenfelder’s “Messengers Managing Editor: Editorial Manager: Sara Kosowsky Gary Green of Life” on page five. T C Design Director: Production Manager: Beverly Kirkpatrick Oumaya Abi-Saab Torey Marcus for the Editorial Board 1998 U.S. Summer Transplant Games Site Announced olumbus, Ohio, has been selected as the site “At the same time,” she for Cthe 1998 U.S. Summer Transplant Games, the continues, “the spirited National Kidney Foundation announced in competition calls attention February. Sandoz Transplant, a division of to the vital need for more organ donation in this Novartis Pharmaceuticals Corporation, was named country and pays respect to the unselfish gift from primary sponsor of the event. the families of organ donors.” The Games, which are scheduled for August 5-8, Hank Rosenzweig, chairman of the NKF’s 1998, will be held at the athletic facilities of Ohio Transplant Games Committee, says that the State University (OSU). The event features more commitment and cooperation of local government than a dozen sports, including golf, tennis, swim- and local host organizations’ personnel, in ming, cycling, basketball and track and field, and is addition to ample athletic facilities and excellent open to individuals of all ages who have received a climate, were significant factors in selecting life-saving solid organ transplant (heart, lung, liver, Columbus as the 1998 Games site. OSU’s kidney, pancreas) or a bone marrow transplant. housing facilities will serve as lodging for the athletes and their families. “The U.S. Transplant Games provide an excellent form of rehabilitation for transplant Attendance for the 1998 Games is expected to patients and the opportunity to generate surpass the record-breaking participation in the awareness of the tremendous success of 1996 U.S. Summer Transplant Games of 1,200 transplant surgery,” says Wendy Brown, MD, transplant athletes, who ranged in age from 3 to chairman of the NKF. “Transplant recipients who 77. The Olympic-style athletic competition has participate in the Games dramatically illustrate been organized biennially by the NKF since T the power of organ donation to restore life. 1990. C 2 Transplant Chronicles, Vol. 5, No. 1 The Essence of Life by Vanessa Underwood, BS, AFAA, ACE As I write this, it is National Organ and Tissue Donation Awareness Week. I feel compelled to dedicate this writing to all donors, especially to my own. On November 21, 1996, organ donation took if she were here, she would say, “I do live on, on an even more profound and startling meaning with you, in you and through you!” It’s a miracle for me, but it was also the saddest day of my life. that the sadness of death can transform into a On this unforgettable day I lost my donor, my bittersweet joy for those who grieve over loss and confidant, my teacher, my best friend—my those who receive a second chance at life. In my mother. case, I am experiencing both. Often, I have thought about the gratitude that I have been blessed, as have all recipients, recipients feel toward their unknown donors and donors and donor families. I cherish the love of the hopeless feeling that they may never know my mother and of my sister, Grace (who also anything about the person who has given them a donated an organ to me), for their gifts of life to second chance at life. I have thought about the me. To all the donors and donor families, I thank donor families and the pain they feel after losing you from the very depth of my heart. their beloved. I have thought about the unselfish, altruistic gift of life. Despite these thoughts, I The passing of my mother has become another don’t think I ever could have clearly understood stepping stone in my life—another level at which the feelings of these recipients and donor I try to understand. When I think of her and “our families, as I had a living-related donor who was transplant,” I have a deeper understanding of the always with me. She was a donor I could kiss entire experience. Although I grieve and my pain and hug and thank. But now it’s different. is intense, I smile, knowing that she is truly a part of me. I pray that all donor families can find My mother, who I could never have thanked this sense of peace and well-being, and that the enough and who certainly found her thanks in smile will return to their faces, as life continues T seeing me healthy, is now gone from this world. because of them and their loved ones. C So many things take on different meanings now. Now I understand! She lives on! When said in this context, it is so much more profound than when we normally say, “She lives on through you!” to someone grieving over the death of a loved one. In all my pain and grief, I think about life and its meaning. Somewhere underneath the tears and the sorrow I found that flicker of hope, the twinkle of light. I realize that I hold the essence of my mother and her life right here in me and through me. What a peaceful feeling to know that she is truly a part of me, not just emotionally and spiritually, but physically, too. My mother brought me into this world and she Vanessa (middle) cherishes the love of her mother, taught her lessons with pride and love. I am Caroline Freije (left), and sister, Grace Freije, both of everything I am because she loved me. When my whom donated kidneys to Vanessa. life was threatened she gave me life again.