Kidney or other Transplant recipients?

Hi all,
Humbled by the wealth of knowledge and experience here at CPF, I respectfully ask anyone who has undergone, or knows someone who has undergone, a kidney or other organ transplant for your thoughts and insights into the process and it's impact on your life. I suddenly find myself on the national kidney transplant list and although I've been around the medical merry-go-round a few times, this is new and uncertain territory.

Fortunately, despite the decline of my kidneys, my body has stabilized somewhat and I do not require dialysis. Gladly, I'm not facing an immediate life and death decision. Still, the condition severely compromises my daily life and I'm wondering if a transplant offers any real benefit other than ten years of continued existence? I'm not afraid of death nor do I fear the procedure. What does scare me is the thought of prolonged life in a debilitated state. Some doctors are very nice people but I don't want them to be my daily companions. I'm particularly interested in the required pharmaceutical regime as well as long term post-op quality of life.

Any and all thoughts are greatly appreciated.
Thanks
shakey

My wife underwent a kidney and pancreas transplant as UCSF in April of this year. She had been on the list for a couple of years. During the wait she had to undergo dialysis 3 times a week.

We relieved a phone call from UCSF at 2:00AM and were told to get to the hospital by 4:00AM. Her surgery went very well. The organs responded very well to the transplant. The surgical staff made two major errors. The first was nicking an artery and not noticing it. This caused a major infection. That took about a month of hospitalization to fix. For about a month after she got home it was amazing how the transplants had changed and helped her. She had been diabetic for 20+ years prior to this operation.

After that month was up her health began to deteriorate. It turns out that they also nicked her intestine and missed that. Since June and for the foreseeable future she is undergoing IV antibiotic/antifungal infusions every day. Fortunately this can be done at home. She has been in the hospital for about 4 months total since the operation. If the mistakes hadn't happened she would have been out of the hospital in a week.

I don't want to alarm you with what we have gone through. This is the exception to the rule. UCSF is the top kidney transplant hospital in the world. You will be put under and wake up a new person. I have asked my Wife many times even with all the problems was it worth it. He doesn't hesitate when she says absolutely. As for the drugs she needs to take, she takes about a dozen pills twice a day. Nothing that is a huge problem. The cost of the medicine is fairly obscene. We brought home a bag of the drugs when she was released. A receipt for the drugs were in the bag. It totaled over $77,000. My insurance covers the meds and procedures. So far in the last 6 months the total not including drugs for what has been happening is pushing $1,250,000.

We both wish you the best with what is waiting for you.

gorn,
thank you for your reply. I wish your wife a speedy recovery. Years ago I underwent intestinal surgery at the hands of a surgeon I later learned was an alcoholic. A year passed before I recovered from his peculiar brand of surgery. My father used to joke somewhat seriously that all doctors are "practicing" physicians. And the more I experience modern medicine (my first wife was a hospital nurse) the more I'm convinced it is art more than science.

I too am enrolled at UCSF and having interviewed at some other institutions, UCSF was by far my first choice. I assume your wife received a cadaver kidney. How long was she on the list? Has your wife tolerated the post op drugs without side effects? Has she noticed a significant change in her energy level? Did the transplant trigger any emotional or ethical issues?

Thanks again for sharing your experience.
Warm regards
shakey

My wife was on the list for 2 - 2 1/2 years. It wasn't that long of a wait because it was a dual organ transplant. It was a cadaver donation. It didn't pose any major mental problems or concerns, although just the thought of what the death of one person did for her was a little overwhelming at first. Getting the doses of the drugs right takes a bit of time. That caused her some physical discomfort (headaches etc.). But once that was figured out it isn't a problem.

The difference in her is like night and day. She was lethargic and "existing". Now she is full of the life like when she was 17. It is truly a miracle.

The staff at UCSF is top notch and great. It is a shame that they missed a couple of small nicks from surgery but those things happen. They have taken great care of her since. The more your kidneys deteriorate the worse you are going to feel. The morning after you receive a transplant you will feel like a new person. Her energy level is so much better that I have to keep on her not to overdo things.