Dylan's complications at birth which included lack of oxygen were due to being born a few weeks premature and a rare condition known as post-urethral valves. This condition led to the backup of urine in utero such that one of his kidneys developed severely deformed and the other worked at much reduced capacity.
Because of the family's vegetarian diet, Dylan's kidney lasted five years. By the time his kidney failed, Dylan had undergone scores of blood tests, nine blood transfusions, dual ureterostomy where urine drained out his back, a reversal, a surgery to remove the post urethral valves and surgery to hook his urinary tract back up together. He had pneumonia three times, etc.
At first, Dylan's kidney donor was to be his mother, JeanneE. The transplant was to be done at Childrens Hospital in Boston. A few days prior to Dylan's nephrectomy in preparation for the transplant, an anomaly was found with JeanneE's blood test and it was determined that she was rejecting Dylan's tissue (from small amounts of her blood introduced into his system).
Five weeks later, I gave Dylan my left kidney. In the process of going through the preliminary tests, I discovered that my kidneys were in great shape and that I had large gallstones (which have never bothered me). I went through xray tests. I had an angiogram to better determine the blood supply to the kidneys, their shape, etc. I also had a nuclear medicine test to determine how close to each other the kidney functions were. This then determines which kidney is to be removed. There are psychological screenings and soul searching.
In April, 1991, the transplant was performed in Boston. Dylan and I were a few hundred yards apart in separate recovery rooms. JeanneE stayed with Dylan while best friend and nursemaid Walter O'Brien stayed with me. Walter's being in my room twenty-fours per day for three days was an invaluable help to us. I stayed in the hospital for five days.
Dylan, on the other hand, had every setback including: acute kidney rejection, reversal using OKT3 medication, cytomegalovirus infection, high fever from infections, shingles, etc. He even went into a coma as a result of the high fever. He spent ninety-three days in Childrens Hospital. Eventually, the medical balancing act succeeded and he gained weight. He went from thirty-two prior to transplant to sixty-four pounds when released.
A year later, Dylan underwent a bladder augmentation which stitched a portion of his digestive tract onto his bladder to increase his fluid capacity. He needs to self- catherize himself and takes the typical medication that an organ donor would take: cyclosporin, immuran, prednisone, atenolol, bactrim, oxybutynin.
Five years later, Dylan is now ten
years old and weighs one-hundred-twenty-four pounds. He is a
bright, alert, happy young man (now ten years of age) who recognizes
that his condition is a lifelong one. He has had to cope with the
behavioral side effects of prednisone. Presently, he is dealing
with a low platelet count (which may be caused by medication).
As the kidney donor, I can say that it took about a year for me to recover. The major post-surgical consequence of donating a kidney is the pain from the incision itself. One needs to be clear that this is a major surgery. There is a tenderness and an unease at the location of the incision that made it difficult for me to sleep for many weeks. As for the health consequences, I gained twenty pounds. Other than that, I see no change from my general health before and after the surgery.
I have written this page in order to share with others, especially those contemplating being a living related kidney donor, my experience. Only the individual her or himself can make the decision to be a donor. It is a very private matter and one in which noone else should influence. I am happy to answer questions about my and our family's experience.
Send e-mail to:Jozef
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