A Family Matter
-- Sherri R.ís Story

Adult Kidney Transplant Recipient and Donor

Sherri R. is a 36-year old woman who was in advanced stages of kidney failure when she went on the UNOS waiting list for a kidney-pancreas transplant at the age of 33. The dual organ transplant was ultimately not a possibility, so her father donated a kidney to her. She and her father Will, had their surgeries at the University of Alabama Hospital (UAB) on November 21, 1994. The author interviewed Sherri and her parents, Will and Jane, about their experiences.
Sherri: The first time we went to UAB, the doctor said I was definitely a candidate for kidney transplant, and it was just a matter of how much longer I had. They explained the options to me: I definitely needed a kidney transplant, but another option was to simultaneously perform a pancreatic transplant, a procedure which should actually cure my diabetes. Having been a diabetic since I was 13, the idea of no longer having to take daily insulin injections really appealed to me. Since there was going to be a transplant, why not do the whole thing? So, we went from there.

I had been on the UNOS waiting list for about a month when I found out I couldnít be on both the pancreas/kidney and the kidney transplant lists. By then, I was also on dialysis and the dialysis wasn't working very well for me. So, Dad decided he would go ahead and give me the kidney. We knew that a relative kidney transplant would have the greatest chance for success.

Will: When Sherriís kidneys failed and she went on dialysis, she was on the kidney/pancreas waiting list, but she wasnít taking dialysis well. My wife and I contacted the transplant center and told them that either one of us who was compatible would give her a kidney. They did the blood tests on both of us and said that either one of us looked good. I made the decision that I would be the one to give Sherri a kidney -- if they said I could following evaluation. I felt that Jane, my wife, could take better care of me during the recovery period than I could take care of her. And I just felt like it should be me.

Question: Where was your funding coming from?
Sherri: The funding came from Medicare. I was already on disability, so Medicare would pay for the kidney transplant, but they wouldn't pay for the pancreatic transplant. I had to agree that I would pay for whatever Medicare wouldnít. It was about $120,000 for the two-organ procedure, and then I would be financially responsible for the portion that was for the pancreatic transplant. I had Blue Cross & Blue Shield as a secondary insurance. They covered co-payments, but they only covered the same procedures as Medicare, so they, too, wouldn't cover the pancreatic transplant, only the costs associated with the kidney transplant.
Question: Will, what did the pre-operative and post-operative periodS involve? How long were you in the hospital?
Will: I was in the hospital three days for evaluation. I donít think Iíd ever had a physical like that. They did an intensive evaluation. I thought it was to see how compatible my kidney was, but the doctors told me "no, this evaluation is to make sure that itís not going to endanger your health by giving a kidney." I said, "that makes me feel real good." Before I went in, I told them I was healthy as a horse, and when they finished the evaluation they said, "you know, hey, you were right."

It took a lot longer to recover from the surgery than I thought it would. I was handled by a urologist, and the transplant doctors handled Sherri. We were actually in different wings of the hospital. I was in the hospital for roughly a week, but it took about a year until I got back to the point where I was doing what I could do before the surgery.

Question: Will, how was your surgery paid for?
Will: It was paid for by Sherriís Medicare. I had virtually no out-of-pocket expenses at all, except for one the trip back to the urologist, and travel expenses.
Question: Sherri, how long were you in the hospital before the transplant and after the transplant? Also, what kind of out-patient experience did you have immediately after you were released from the hospital?
Sherri: I was in the hospital a month before the surgery. After the surgery itself, they put me up in a townhouse near UAB for about three or four weeks. After that time period, I had to go back to the clinic once a month. That, I had to pay for by myself. I had my clinic day, which lasted for the whole day. Family members took me. I could have driven myself, but my family helped me.
Question: Jane, I know you were in the position of wanting to be with your daughter, but then you had to be home taking care of your husband as well. This must have been quite stressful for you.
Jane: That was very emotional, and I was actually torn between the two. A real good friend of Sherri's came and stayed with her at the townhouse and I went home with Will. Recuperation for him was long.

Question: Did UAB provide you with any kind of home health care or counseling?

Jane: There is a lady I could call at UAB. We felt very free to call her at any time. We had questions about Willís surgery and about Sherriís surgery. They told us the recuperation was going to be worse for him than for her. But itís emotionally draining on the whole family, and at the same time you just thank God that the person needing the organ is finally going to receive one, and youíre just always praying that thereís no rejection.

They didnít provide any home health care, but I think it would have made it a lot easier. I mean, just changing the linens could get really difficult.

Question: Sherri, what was the most difficult part of the process for you?

Sherri: The surgery really wasn't that difficult. The medications are the hardest part, because your transplant medications are lifelong. Iím really scared to death because as of the 21st of November, my medication will no longer be covered. Medicare only covers anti-rejection drugs for three years. I donít know what Iím going to do. My medications will cost me about $600-700 per month once Medicare stops paying. Thatís about $8,000 a year, for the rest of my life. Thatís the bare minimum.

I talked to the social worker, and I don't have a whole lot of options. My best chance is getting involved in some kind of clinical trial where the government picks up the tab because Iím using experimental drugs. But I can't plan any of that in advance. I have to wait till right before Medicare is going to cut me off, then Iíll have to contact the pharmaceutical companies that make the drugs, find out about any trials, or maybe theyíll give me the medication.


Commentary:

Sherri R.ís kidney transplant would have to characterized as a "mitigated" success. If Medicare had agreed to pay for a dual kidney/pancreatic transplant instead of just the kidney transplant, Sherri R.ís prognosis would be much more positive: a new pancreas could have cured her diabetes.

Her current situation is an example of curing the symptom, but not the disease -- which, in the long run, does not seem to be either cost effective or emotionally helpful. Itís more like the old joke, "the operation was a success, but the patient died." Sherriís kidney transplant surgery was successful, but did it really make sense to only replace the kidney when the long-term effects of her diabetes could still eventually claim the new organ?