FIVE YEARS OUT

by Donovan Cooper

From the Editor: Donovan Cooper is a former President of the Diabetes Action Network of the National Federation of the Blind, and remains an active federationist. Although he has experienced more than his share of complications, he doesn't let the side effects of diabetes slow him down.

I received a kidney/pancreas transplant at the University of Minnesota Medical Center in June of 1991. I subsequently wrote two articles about my experience for VOICE OF THE DIABETIC, one personal and one speaking in more general terms about the financing of transplantation. By the time you read this status report, it will have been six years since my surgery and five years since the publication of those articles.

I am happy! All of the things projected for me by the transplant surgeons have come true. The damage to my cardiovascular and nervous system caused by diabetes has been arrested. Perhaps in ways measurable only by clinical instruments, I have demonstrated improvement in neurological responses, but I don't notice any difference. What counts is that things are no longer getting worse. One major improvement is no more hypoglycemic episodes--because I no longer need to take insulin! Hypoglycemia unawareness was very troubling before the transplant--and it is no longer a problem. My glucose levels are always within the normal range and my hemoglobin A1C tests always come back in the four to five range. You just can't beat that for blood sugar control!

I no longer test my blood sugar on a daily basis. I have only a monthly set of lab tests, or more frequently as needed.

I went back to work at my old job, two months after my transplant, and have been working there ever since, except for another traumatic set of medical events two years after my transplant.

Prednisone is part of the necessary immunosuppressant drug "package" required after transplants. These are powerful drugs, with potential adverse effects, and prednisone use can lead to some serious problems. As a combination kidney/pancreas recipient, my long-term prednisone dosage has been set at 10mg per day. Some (kidney-only) recipients can eventually reduce their dosage to 5mg per day, or less, but it is very doubtful that this will happen to me.

Because of my prednisone usage, I experienced aseptic necrosis of the right hip. Part of the ball in the hip joint died, and the joint had to be replaced. During the hip replacement surgery, the already-damaged nerve traveling past the hip joint to my right foot was further damaged, enough to give me what the neurologists call a "dropped foot." I eventually regained the ability to lift my toes, but the foot still sometimes involuntarily drops, causing me to trip over things. Wearing shoes to keep the foot straight helps, but I do limp and there are certain things that I cannot do with that right leg.

Unrelated to the hip bone disease, on the day after the hip surgery, I had a heart attack. I was fortunate to be in the hospital, and being visited by a friend, when I stopped breathing. My autonomic neuropathy had brought on a painless heart attack! There was no warning. I just stopped breathing. Help was summoned, and I eventually regained the ability to breathe. The following day, I was given an angiogram, and was told that I needed quadruple bypass surgery, which took place three days later.

The recovery from hip and heart surgery at the same time was difficult and, again, it was a little more than two months before I could return to work. But, I have been working ever since, both as a Federal employee and as an Officer in the National Federation of the Blind of California.

Prednisone sometimes causes weight gain. I am one of the unfortunate ones who has become obese as a result of this drug--combined with my body's new-found ability to produce all the insulin it will ever need. I gained 70 pounds after my transplant. Recently, my doctor placed me on the appetite suppressant Redux. Having only been on it for two weeks as of this writing, weight loss, other than water loss, is not yet very evident. But I am eating less, so I am quite encouraged.

Life as a kidney/pancreas transplant recipient is good, except for the extra weight I lug around. But, with a little help from the pharmacy, the weight load becomes almost tolerable. I hope to lose much of my extra weight over the next few months, and then, when the reduced weight makes my joints more comfortable, I will be able to keep it off, by putting much more exercise in my life.

My out-of-pocket costs for medical care have been dramatically lowered. A year after the transplant, I felt comfortable switching to an HMO. They won't pay for my occasional trips back to Minnesota, but they are otherwise very helpful in keeping medical costs down.

All in all, I am glad I had the two-organ transplant, and would recommended it to those who are eligible candidates. There are now many good transplant centers across the country offering pancreas transplants, either in combination with kidneys or without. Many transplant centers shy away from pancreas-only transplants, considering the necessary immunosuppression therapy too risky. Of course, when you get a kidney transplant, such drugs are necessary for life, and that fact helps to justify the inclusion of a new pancreas either with the new kidney, or in another surgery at a later time.