Five Years Out

Five Years Out

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.