Transplant Chronicles

Transplant Chronicles Volume 6 A publication for transplant recipients of all organs and their families, Number 1 published by the National Kidney Foundation, Inc. ow could I look down into believed we had a chance, and I hisH crib one more time knowing their responses were “like finding God would take him from me? a needle in a haystack,” or like This is my first grandchild who I “winning the lottery.” Not only are Hurt wanted so very much. blood type and cross match very important, the size of the donor My Cody was born with a heart plays a big part, too. His hypoplastic left heart, meaning he little chest would only accommo- So Bad only had two chambers instead of date a heart maybe four months the normal four. He was born at older than Cody, and his time was by Joyce Rasmussen Unity Hospital, transferred to running out. Children's Hospital, then a week later transferred to the University Cody already had lived longer of Minnesota, where for five weeks than the doctors thought, but we hoped and prayed for a heart soon it would be too late. I was transplant. Soon I was filled with trying to keep my kids’ emotions doubts and anger, which aroused down so that when the time came many questions. How could this for us to say goodbye to our dear beautiful child be created with little Cody, we could thank God only half a heart? His heart for the short time we had with monitor told me he heard and him and accept his decision. I related, because the beat of the had come to the hospital every monitor fell from 200 beats per day, many times finding my son minute to a relaxed 140. Rob leaning over Cody's crib, his shoulders shaking, and I knew I I had to stay strong for my would find his eyes filmed over kids, who needed to lean on me. with tears. For the first time in They were so very sure that Cody my son’s life, I could not fix this. I After his heart transplant, would receive a new heart and could not make Cody well, and I Cody “continues to grow everything would work out well. couldn't do anything but watch and give warmth and love As a nurse, I knew that our my only son suffer with this grief. wherever he is,” says his chances were slim. I had asked I felt too useless and I HURT grandmother. the doctors I worked with if they SO BAD. Continued on page 2 transAction! Transplant Chronicles is a COUNCIL Program of the National Kidney Foundation, Inc., supported by Pharmaceuticals Corporation National Kidney Foundation® ✍ editor’s desk Transplant Chronicles Welcome to another edition of Transplant Chronicles is published by Transplant Chronicles. This issue the National Kidney Foundation, Inc. once again is filled with the most Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc. current facts and stories of Editor-in-Chief: transplantation. In fact, we were Beverly Kirkpatrick, LSW unable to print all submissions Philadelphia, Pennsylvania that were presented to our editorial Editors: Ira D. Davis, MD Vanessa Underwood, BS, staff, but have plans to place them Cleveland, Ohio AFAA, ACE Plaistow, New Hampshire in the next issue. Maurie Ferriter, BS Lakeland, Michigan Jim Warren, MS Beverly Kirkpatrick San Francisco, California Thank you to all who responded Cheryl Jacobs, LICSW Minneapolis, Minnesota Becky Weseman, RD, CNSD, LMNT to our “Hot Topic” question—responses can be Omaha, Nebraska Teresa Shafer, RN, found on page 14. MSN, CPTC Laurel Williams, RN, MSN Ft. Worth, Texas Omaha, Nebraska At this time of the year, most are probably Nancy Spinozzi, R. Patrick Wood, MD planning summer vacations or hopefully a trip to Boston, Massachusetts Houston, Texas the Transplant Games. Whichever it may be, take Editorial Office: some time to read Cheryl Jacobs’ article for some National Kidney Foundation, Inc. 30 E. 33rd Street, New York, NY 10016 travel tips! Have a great summer, and for those (800) 622-9010/(212) 889-2210 T http://www.kidney.org traveling to Columbus, Ohio, I’ll see you there!!!!! C Executive Editor: Editorial Director: Beverly Kirkpatrick Diane Goetz Gigi Politoski Managing Editor: Editorial Manager: for the Editorial Board Sara Kosowsky Marla Behler, CSW Design Director: Oumaya Abi-Saab answered. Rob's voice came over the line. He was I Hurt So Bad crying and I could not understand what he was Continued from page 1 saying. Finally, I realized he was trying to say that a heart had been found and Cody was being We were told by the doctors that Cody was in prepped for surgery. I could not believe what he desperate need of a transplant and if it did not was saying. As the shock from Rob's news began take place soon, it would be too late. They had to fade, I again had many questions. How did been in contact with a hospital in St. Louis, this miracle happen? Missouri, that had conducted baby transplants. After a great deal of debate, we decided Cody The surgery took place in the wee hours of the should be moved to St. Louis for further morning with great success. Not only was it an attention. exact type and cross match, but it was also a perfect size. We were told the heart that Cody Each evening I held my breath when the desperately needed came from an eight-pound phone rang, waiting to hear if Cody was still with baby girl. My excitement changed to sorrow us. It was the tenth day in St. Louis (Cody was when I thought about the pain the donor family now nearly two months old) when I received the went through with the loss of their daughter. I dreaded call from Rob saying, “Our lovely little thought about how hard it must have been for Cody is not going to make it.” I yelled, “You can't them to see through their grief and pain and give up, you of all people, who has been so make such a great decision. I also thought that strong and positive. There is still some time and it was a courageous decision and I was very you have to hang in there.” I hung up the phone grateful to them. I felt for the child's and, crying out of control, began praying to God grandparents, for I knew they felt some of the for help. I HURT, I HURT SO BAD. An hour later ame emotions that I felt during Cody's struggle. the phone rang again and I forced myself to lift the receiver, knowing our prayers were not ➔ 2 Transplant Chronicles, Vol. 6, No. 1 This letter was received from the donor family amounts of oxygen, he displays exemplary shortly after Cody's surgery. health. He is smart, beautiful, funny—walking, talking and doing all that a “normal” three-year- August 1993 old would do. He plays an integral part in his good health by helping to administer his own Sitting here with our hearts breaking, we medications, taking the worst-tasting wonder why such a horrible thing had to prescriptions first. happen. Why would God take such a precious child away from us? We know now that Makenna Rob and Roxanne correspond with Ross and Stef, and my husband, Wally and I correspond was never ours to begin with, rather an angel with Makenna's grandparents, Mike and Linda. sent to give life to another. Our purpose was to At Christmas each year, I send a picture album love, cherish and protect her until her task was with a year’s worth of photos showing how he complete. Makenna flies again in the heavens, has grown and what he is doing. Ross and Stef forever happy, forever without pain. When your have since given birth to a daughter named child is old enough to ask why the scar lies on Claire. She is perfect. Now I no longer feel like a his chest, tell him that an angel came down from thief in the night. I always felt we got something heaven and placed a heart full of love and joy in so special and they were left with just memories. his chest and healed the wound with kisses . Now they have Claire to hold in their arms along thus the scar. with loving memories of Makenna, which they will always hold in their hearts. - From those that loved her Finally, after two and a half months, our little A reunion is planned for this summer for the Cody came home. The kids were drained families of Cody and Makenna, and how emotionally but very happy to be back home. I wonderful this will be. It will be nice to wrap my never thought I could feel such happiness. The arms around them, gather them near and love of a grandmother for a grandchild cannot whisper in their ears “thank you, I do not hurt even be told. It is unexplainable. anymore.” In December when Cody was nearly five Looking over the past three years, I consider months old, Rob and his wife Roxanne were myself to be a very lucky and thankful lady. The contacted by the Phil Donahue Show. A donor - “needle in the haystack” was found, and the recipient show was being planned and their lottery of life was won and the “pot-o-gold at the presence was requested. Rob and Roxanne felt it end of the rainbow” is mine ..

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