Giving and Getting Gifts of Life by Adela T
Total Page:16
File Type:pdf, Size:1020Kb
Transplant Chronicles Volume 8, Number 2 A publication for transplant recipients of all organs and their families, Fall 2000 published by the National Kidney Foundation, Inc. Giving and Getting Gifts of Life By Adela T. Casas, MD W hen Astrid Deleon was dying child, since no other just two-and-a-half months old organ was immediately she was hospitalized with renal available. They did not failure caused by a defect in her hesitate to say yes. Unfortun- liver. Her diagnoses was ately, the child who received oxalosis, a hereditary disease Astrid’s recovered organ did that causes the body to deposit not survive. But the Deleon oxalate into the kidneys and family’s gift should not go causes them to fail. Astrid unnoticed. needed a kidney and liver transplant right away. Despite Astrid received a kidney/ the presence of oxalosis, liver transplant and did very Astrid’s liver was otherwise well. She was the youngest Portrait of generosity: Ivan and functioning normally. A kidney/liver transplant Astrid Deleon and their Mom transplant would prevent recipient ever. After Astrid’s Sonia Martinez. further damage to her kidneys. transplant, her brother Ivan was rushed to the emergency match. Just as Ivan was room. He was unable to void scheduled for his transplant, a “They did not hesitate and had severe back pain. Ivan beautiful three-and-a-half- week-old baby was diagnosed to say yes.” was also diagnosed with oxalosis as well as kidney with a coagulation defect that stones. Like Astrid, Ivan’s liver clotted the vessels to his liver At the same time, another maintained normal function and left him in acute liver child in the ICU was dying of despite having oxalosis. failure. By chance, the baby, acute liver failure. The Deleon Matthew, has the same blood family was asked if the trans- Once Astrid recovered and type as Ivan. plant staff could recover went home, the Deleon’s Once again, the Deleons were Astrid’s liver after she received doctors began to discuss a approached about donating a her kidney/liver transplant. The transplant for Ivan, who needed child’s liver after transplant and kidney would be used as a only a liver. His mother was once again they agreed temporary transplant for the tested and was found to be a Continued on page 4 © Copyright 2000 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 Summer has ended and if you’re Transplant Chronicles is published by the National Kidney Foundation, Inc. like most people, you’re probably Opinions expressed in this publication do not necessarily represent the trying to get your life back on position of the National Kidney Foundation, Inc. schedule. This can be very difficult Editor-in-Chief: Beverly Kirkpatrick, MSW, LSW at any time, but especially after the A.I.duPont Hospital for Children summer months. Wilmington, Delaware Editors: Most Americans lead hectic, busy Ira D. Davis, MD Jim Warren, MS lives. We rarely take time for Rainbow Babies Children’s Transplant News Hospital Fresno, California ourselves. Add being a transplant recipient to the mix, Cleveland, Ohio Laurel Williams Todd, RN, MSN where you must adhere to medications, appointments Maurie Ferriter, BS University of Nebraska MC NKF of Michigan Organ Transplant and eating right (among other things) and suddenly the Lakeland, Michigan Omaha, Nebraska task of living seems impossible. We all need to sit back Teresa Shafer, RN, MSN, CPTC for a moment and think about how we spend our time Life Gift Organ Donation Center (see time management strategies and ideas in "Don't Ft. Worth, Texas Charlie Thomas, CISW, ACSW Do Lunch," on page 3). Samaritan Transplant Services Transplant Games Photos: Phoenix, Arizona Jay LaPrete: page 3, If you haven’t set some time aside, even 30 minutes, Vanessa Underwood, BS, page 10, A,B,D then you need to take a good hard look at how you can AFAA, ACE page 11, F,G,H,J,K Fitness Trainer/Wellness page 17,C work yourself into your schedule. You are important, Consultant Jeff LaPrete: page 10, C, E so take the time for YOU!! Plaistow, New Hampshire page 11, I Hope you enjoy this issue of Chronicles. We've added Editorial Office: National Kidney Foundation, Inc. pictures of the 2000 U.S. Transplant Games 30 E. 33rd Street, New York, NY 10016 throughout our pages. (800) 622-9010/(212) 889-2210 http://www.kidney.org We would love to hear about any ideas you have for Executive Editor: Editorial Director: future issues as our staff is planning the upcoming Diane Goetz Gigi Politoski T Managing Editor: Production Manager: year of Chronicles. C Sara Kosowsky Marilyn Lara Beverly Kirkpatrick Design Director: Editorial Manager: for the Editorial Board 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. 2 keeping fit Don’t Do Lunch by Vanessa A. Underwood, BS, AFAA, ACE R aise your hand if you do not exercise that we must because you do not have time. Reluctant hands sort through go up in three-quarters of the room, as though all the engage- they will be punished if they admit to this. The ments, com- truth of the matter is that most people don’t mitments, believe they have the time. You have to make the activities and time to exercise. plans and identify what is Lack of time is the number one barrier to exer- truly valuable cise. In a sense, this is true because we cannot add to us. You can more hours to the day. The key here is how we begin making choose to spend those hours. We must choose how the right we best manage our time. Whether you realize it or choices now. Buzz Hodge gives it his all! not, you are making choices every day. You simply These choices have to decide what is most important to you. YOU will have an effect on your long-term behavior. must control your time or IT will control you. Begin by searching and Think about the number of recovering some hidden minutes you spend talking on the moments within your day. If phone, watching television, or you have to go to the grocery entertaining guests. In my home, store for a couple of items and it is an unspoken rule that when you live close enough, take a I am working out, I am not to be walk. Maybe you have a doctor’s disturbed. You must take this appointment in the morning control, too. Otherwise, the and you need to drop off the important things in your life will dog somewhere later in the day. not get the attention they deserve. If both places are in the same Simply by not answering the direction, you can try to sched- phone you could save enough ule them closer together to free time to get a half an hour of Gold, Bronze, Silver – Winners! up some time at the end of the exercise each day. Unless it is an day. If you can find those little emergency, the calls can wait. We have become pockets of time you may be able to go for a slaves to technology. Instead of saying I can’t find 20-minute walk or get in some weight training. In time, say I will make the time. just 20 minutes you can exercise three body parts and get some cardiovascular in there, too. Once you Begin slowly and do not overwhelm yourself. have decided that this is DON’T DO LUNCH what you are going to do, Some of us may have the time during lunch to you must lace up our sneakers and go for a brisk walk. With determine proper planning, you can take advantage of your your priorities lunch hour and go for a walk. and set them. We are all When I worked at a nine-to-four job, four times inundated a week I went to a swimming pool that was about with so many five miles away. I would dress simply so that I things to do Cycling – A sport of skill and all the time, discipline Continued on page 4 Transplant Chronicles, Vol. 8, No. 2 3 Giving and Getting... Keeping Fit continued from page 1 continued from page 3 immediately. "If it is to save another life, do it," could get my clothes off their mother, Sonia Martinez, quickly answered. and on quickly. Before I Although Ivan’s liver made all the necessary went back to work, I still clotting factors, it still had the defect of causing had enough time for a oxalosis. However, the liver was well enough to quick shower. For you allow Matthew to survive and grow until he could men out there, unless you receive another transplant. wear makeup and blow dry your hair, you have an extra 15 minutes to work out.