| VOL. VII | JULY/AUGUST 1996 | NO. 4 |
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| Ten and a half years have passed since my liver transplant. While it and the years of illness that preceded it are not an experience one ever forgets, I have moved on with my life. To the casual observer my life looks "normal" by everyday standards. Publishing "Talking It Over", staying in touch with all of you and visiting transplant patients in the hospital are all an important link and reminder for me of where I have been. However, I find that from time to time I also need to go a little deeper, get a little closer to some of the other issues involved. In June, I gave myself a gift and attended the Second Annual Tribute to Donor Families sponsored by TRIO New England and the New England Organ Bank. Aside from being a very moving and emotional experience, I was amazed at how many invited donor families chose to be a part of the ceremonies honoring them. I had always assumed that these families would prefer not to be contacted after their ordeal and would rather be left alone with their grief. I couldn't help but be inspired by their courage in sharing their sorrow with other families who could understand, and also with us recipients who had benefited so much from it. I found myself wanting to say something to at least one family, but all I could manage was a smile. I didn't know how to bridge the gap between my happiness and their sadness. Perhaps they will never know how much their presence that day meant to me and the other recipients who were there, but I will always be grateful to them. They are truly the heroes in this process, and I thank TRIO and NEOB for making it possible to honor them. Perhaps, someday, the time will be right for me to create a publication that offers them the kind of anonymous support we are able to have with "Talking It Over". In case you haven't guessed, I am a committed optimist when it comes to support networks for people who share common experiences, whether it be a chronic illness, transplantationtation, bereavement, etc. I am convinced that such support positively effects general overall health, well-being and quality of life. Thank you. --Constance Kelly, Editor. |
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IN THE MAIL. . .
Dear Connie,
. . . I have fallen into the same trap as many others, trying to find the time to write. I had a lung transplant 26 months ago. Although there have been some bumps along the way, I haven't regretted having had the transplant. I have been able to accomplish so much.
In September, I went back to college to finish my degree and will graduate in May, 1997. The transplant has increased my ability to travel to different school districts around the state and talk to the kids about the dangers of smoking. I enjoy this very much. In a way, it's giving something back and may stop a youngster from making the mistakes I did.
Briefly my journey started in 1985, when I "died" of respiratory arrest and spent 30 days on a ventilator. In 1988, I developed lung cancer; thank goodness surgery was able to take care of it. In 1990, I had a broken back, five compression fractured vertebrae. In 1994, I got my new lung. Now there is no looking back. I have the world by the tail and thank God everyday when I wake up.
I also thank Him for the wonderful doctors who have worked both for me and with me since the surgery. A big "thank you" to my primary pulmonologist at the New England Medical Center in Boston for a terrific nine years of keeping me going until my new lung could be found.
It is great hearing from people who have had different transplants, but I would especially like to hear from other lung recipients as to how they are doing both pre- and post-transplant. Thank you, Connie, for providing "Talking It Over". I will try to write more often in the future.
Massachusetts (M)
| Let your voice be heard. Write or call your senators and representatives in support of the Health Insurance Reform Act of 1995. Call the U.S. Capital information desk at 1-800-962-3524 or TRIO International at 1-800-TRIO-386 for the phone numbers and address of your representatives. This legislation would remove pre-existing clauses that keep many of us from getting re-insured if we lose our health care coverage and would make it possible to take your insurance with you if you lost or changed your job. |
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I received the following letter from my transplant facility. I thought you might wish to mention some of it in memory of Dr. Folkert Belzer, from the University of Wisconsin Hospitals and Medical School, who died about one year ago.
Illinois (W)
. . . It's been one year since my liver transplant. I've been in and out of the hospital several times. Some were visits for as long as six weeks or as short as three days due to two abscesses, three infections and one medication change. I do feel stronger now and happy to be alive. However, my feet feel like two bumped, "crazy" bones. Does anyone know any tricks that can calm "crazy" feet? I walk everyday which seems to help my attitude. I know it is a side effect of the medication, but I would appreciate some input.
Maine (W)
. . . I am currently waiting for a liver transplant. My doctors at the New England Deaconess Hospital told me about "Talking It Over" and I also read about it in Encore published by Chronimed Pharmacy.
Thank you for your time and effort in helping transplant recipients and candidates through the tough times!
Maine (W)
| Helping Families Talk When Someone Is Ill Lasting Connections is a charitable organization dedicated solely to helping defray long distance telephone costs during a medical crisis. For more information call: Robert and Susan Lawley, (201)575-2903. |
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Many of you may be in the early days and months of post-transplant. Congratulations! It was worth it, wasn't it! My liver transplant will be four years old this September. I can't believe it's been that long. Time seemed to drag while I was waiting, but now I look back and see how quickly time has passed as my life has taken on a more normal routine. It took time for me to realize that life must go on AFTER transplantation. For so many years, the illness and the inevitable transplant WERE my life.
Changes that occur post-transplant may have to do with medications and their side effects or with lifestyle changes that become more precautionary or protective of the new gift of life.
I have another issue which has changed my life considerably. Women must be particularly on guard against bone loss due to immunosuppressive drug therapy. I strongly recommend an early bone density test to make sure you are doing all that you can to protect your skeletal system.
My case is a bit unique in that I was on fairly large doses (average 20 mg daily) of prednisone for 12 years prior to my transplant. The doctors were trying to get the swelling down. Two months before the transplant, I broke two vertebrae simply by leaning over a sink to wash my hands. I had drug-induced osteoporosis; I never knew.
I was never told to take extra calcium and do weight-bearing exercises. Now there are new treatments and therapies to help, but so much should have been done to prevent it. DO CHECK with your transplant team and/or general practitioner about maintaining healthy bones. How unfortunate it is to have a life-saving transplant only to fall prey to the complications of broken backs and hips!
Most of us will be on these drugs for the rest of our lives. Women in the menopausal stage naturally lose calcium at an accelerated rate; the drugs we take can magnify this loss. I think we have to fight back.
At this time, I must be careful lifting heavy objects and doing any sudden twisting, such as playing tennis which I loved. The doctor says I also should not run. Ask your doctors what you can do to avoid this situation, and DO IT! You have a wonderful new gift and will want to enjoy it for many years.
New England (W)
| 1996 Annual TRIO Conference
Nashville, TN
September 26-28, 1996
Call 1-800-TRIO-386 for more information. |
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(Reprinted in part from the North Reading, MA Transcript, May 2, 1996)
Patricia, knows nothing about the person who saved her life. She doesn't know whether the person was male or female, black or white. She does know that she is alive today because someone cared enough about life to pass it on to her in the form of an organ transplant.
She is now recovering from a liver transplant she received at the New England Medical Center in Boston. She wants to raise public awareness of the pressing need in this country for organ donors.
Patricia is 55 and was first diagnosed with liver disease in 1978 while in the hospital for another reason. The doctors told her it was caused by exposure to the Hepatitis B virus. For a number of years the disease was successfully treated with drugs. A year and a half ago drug therapy was no longer effective and Patricia went on the waiting list for a transplant. "I was told it would be about a year to 18 months or longer, they just didn't know," she recalls. That year and a half were possibly the most difficult in her life, waiting for the life-saving gift she could not be sure would come.
"I tried to stay as fit as I could and lose some weight, but that wasn't easy because of the medication I was on," she said. Exercising wasn't easy either "because of the way I was deteriorating. Waiting was the hardest part. I knew it would be foolish to sit waiting by the phone. I had to tell myself, 'when it happens, it happens.' That's the only attitude I could take. I was going to get on with my life."
Patricia's ordeal is not unique. According to the New England Organ Bank, more than 18,000 people in the US benefited from life-saving and life-enhancing organ transplants last year. Yet more than 45,000 others still wait. An average of 8 to 10 people die everyday awaiting a transplant for one simple, tragic reason: a shortage of donated organs and tissues.
The shortage is not entirely the result of unwillingness to donate, but is due in part to the fact that people who would be willing to donate after death do not tell their families of their wishes. "I think it's related to the same reason more people don't make out a will. They don't want to confront their own mortality." "Before this, I was very much afraid of death," she said.
She's convinced there's a need to educate people about the need for more donors. Her liver transplant didn't just save her life, it changed it and her whole outlook. Patricia hopes people will call their local organ banks for more information. Here in New England, the number is: 1-800-446-NEOB.
Massachusetts (W)
| A special thanks to Marty Smith, Director of TRIO New England for putting in a plug to their membership for letters to Talking It Over. The responses we received helped me publish another precious issue.
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Since 1985, this Foundation has raised funds and provided grants for transplant medications to defray the high costs of medication for transplant recipients in need of financial assistance.
"Talking It Over" unifies transplant recipients and their families through supportive communication relative to individual experiences. Anonymously written letters to the editor may generate responses from readers about how they deal with a particular problem but are not intended as a forum for giving medical advice, solving problems or for solicitation. In keeping with this philosophy, each person is free to discuss any topic of importance to them, no matter how unusual or controversial. Copyright © 1996, 1995, 1994, 1993, 1992, 1991, 1990. Transplant Recipient Communications, P.O. Box 134, Ashland, MA 01721. All rights reserved. Reprint or reproduction without permission of the publisher is prohibited. |
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