by Ann S. Williams, M.S.N., R.N., C.D.E.
This column focuses on providing information to help people make their diabetes care fit their needs and their lives.
This month, I'm going to write a different sort of column. This month, I will interview a person I know, who has had an extraordinary, life-changing event.
A few weeks ago I received a phone call, from Greg King, who has had type 1 diabetes for 32 years. "Guess what, Ann?" he said to me, "I don't have diabetes any more. I got my new pancreas!" We cheered together, and he went on to tell me that he had woken up with absolutely normal blood glucose that morning.
Over the next few days I spoke with Greg several times. He felt overwhelming relief and joy at being able to have normal blood sugar, with no hypoglycemia. He mentioned, several times, that his thinking was clearer than it had been for many years, and that even though he was recovering from major surgery, he felt better and stronger than he had for years.
A few weeks later, Greg and I talked, about his life with diabetes, and his new pancreas. His enthusiasm is contagious. I think many people would be interested in hearing his story, so with Greg's permission, I'll give you a condensed version now.
Ann: Tell me a little about what happened to you around the time your diabetes was first diagnosed.
Greg: I was ten years old. It was January 29, 1972. I was doing math homework, and I got a headache, and I went to lie down. I was feeling really sick for three or four days. I asked my father to take me to a hospital, and he did, and I was diagnosed with type 1 diabetes. When I looked back on it, I realized I had been thirsty in school a lot, and peeing all day long, and this had gone on for several weeks.
Ann: What was it like growing up with diabetes in the 1970s?
Greg: One thing I remember is a big change in my family's diet. I was the second oldest of six kids. The whole family eventually changed our way of eating. We used to eat a lot of things like pancakes, and biscuits with syrup. But after we learned I had diabetes, we had to keep balanced food in the house. That wasn't easy. We weren't rich. We had to feed a lot of people on a little money, and it had to be balanced food.
The shots never bothered me. I wasn't squeamish about the shots.
And then there was the suffering with hypoglycemia when I was young. My answer to hypos in those days was junk food. I was never a couch potato. I was always active. So, for example, maybe I was in someone's yard playing football, and I'd get that horrible feeling, all shaky and sweaty. It's a terrible feeling. So I'd eat junk food, whatever was handy. I didn't know yet that it takes 15-30 minutes for the food to convert to glucose and raise the blood sugar. So I'd just gorge myself with junk, and then I was on a seesaw, going from low to high. When I was young, I could do that and not feel bad. But when I got older, I could really feel it, and it isn't a good feeling.
Ann: What advice would you give to young people with diabetes?
Greg: When you're young, with type 1 diabetes, you have to take care of it. You feel like nothing bad is happening, so it's hard to believe the complications can really happen to you. But they can happen to you, and they will happen to you, if you don't take care of the diabetes.
And I really did not know much about the complications when I was young. The doctors beat around the bush with me. They told me, "You could get this, you could get that." But they never told me straight out that if I didn't take care of my blood sugar, I would go blind, or lose my kidneys, or anything else. I wish the doctors and diabetes educators had told me about the complications more clearly--what the complications are, and how they happen, and how to avoid them.
When I was young, I felt invulnerable. Maybe if I had met someone who already had diabetes complications, I would have paid more attention.
Ann: When did you start paying more attention to your diabetes control?
Greg: When I started having protein in my urine, and the doctors got more serious about explaining kidney failure. I was a young adult, trying to make a living, trying to have money in my pocket and gas in my car, not paying much attention to diabetes. I was a draftsman, and that was monotonous work. And then I worked in a small food store for a while, and then I worked in security. Then I was a county patrolman. I really loved that job. I wanted to stay in that job until retirement. I was there for two years and 18 days, and that was the end of my short work life.
Ann: Why did you leave?
Greg: I had been having laser surgery for diabetic retinopathy for about 2 1/2 years. Then, on March 21, 1988, I woke up and everything looked very fuzzy. I had driven home the night before, but after that I was blind. I had to give up driving cold turkey. That was very hard for me, because I loved to drive.
Ann: What else do you remember about the time you became blind?
Greg: We had a very hot summer that year. There was no air conditioner in our house, and I couldn't get in the car, which had an air conditioner, or go somewhere else with an air conditioner. I thought I would die of the heat. I had some rehabilitation teaching at Cleveland Sight Center, and I was entrenched in kidney disease. I was tired and slept all the time, and dialysis was just around the corner.
Ann: That was around the time I first met you. As I remember, you were on dialysis soon after that.
Greg: Yes. I started dialysis in September 1988. It was awful. I felt terrible the whole time I was on dialysis. I had dialysis three times a week for four years.
Ann: I remember you decided very soon to try for a kidney transplant.
Greg: That's right. Always, from the beginning, the doctors and nurses encouraged me to get on the transplant list. I was on the waiting list for four years before I got my kidney. I had four false alarms before I actually got a kidney that matched my tissue type. I would get a call, and go to the hospital, and the tissue type wasn't exactly right, so I would have to go home without a kidney.
My kidney came in the nick of time. I wasn't doing very well physically. I got a call about 2 AM. It was my time. They had a kidney with a good tissue match. I had to go to the hospital right away for more tests to confirm the tissue type. Then in the morning it was a go. I had the surgery, and when I woke up what I remember the most is that I could pee. Because when the kidney shuts down, there is no peeing. It's almost unbelievable how good it is to do that when you haven't been able to for so long.
Ann: Have you ever had any problems with rejection of the kidney?
Greg: No, I've never had any rejection episodes. I have been on anti-rejection medications the whole time. And I have never had any adverse side effects from them, other than a little bloating.
Ann: How did you decide to get on a waiting list for a pancreas transplant?
Greg: My doctors were throwing subtle hints to me, telling me my diabetes could do the same thing to my new kidney as it did to my old ones. They were strongly hinting, and urging me about having a pancreas transplant. I gave it some thought, but I didn't have to think too long. I was fortunate enough to be nine years out from the kidney transplant, with my kidney still working, and no bad effects.
I talked it over with my family. No one wanted me to have another major surgery. But then we considered what it would mean to be rid of diabetes. No more injections, no more hypoglycemia, no more diets. The hypoglycemia episodes were increasingly frequent, and the rebound from my low blood sugars didn't allow my muscles to regain energy. I often had to lie down and rest. And the neuropathy, the numbness in my feet and calves, was increasing. If I stepped on a nail, I was not going to feel it. Once my family understood what getting rid of diabetes would mean to me, they agreed.
Ann: What happened after you decided to get on the waiting list for a pancreas?
Greg: I had a lot of screenings--blood work, urine tests, an EKG, an echocardiogram, an ultrasound of the lower abdomen to locate the exact position of all the organs. They wanted to make sure I was strong enough and well enough to recover from the surgery. They checked to make sure I had insurance coverage for the anti-rejection drugs. Those are expensive drugs, and you have to take them twice a day for the rest of your life. I also had to see a social worker, to go over my family life, to make sure I had the support I would need.
They evaluated me thoroughly. Organs are scarce, and they want to make sure each organ goes to someone who will keep it and use it.
I was on the waiting list for 20 months exactly, from May 9, 2002 until January 9, 2004. I had false calls eight times, when I would get a call that they had a pancreas, and I would go to the hospital, and the tissue match would not work out. I finally got my pancreas on January 9, 2004.
Ann: Did you ever get discouraged while you were waiting?
Greg: I couldn't get discouraged. I had to get focused on keeping the blood chemistries right and keeping my health together. I knew I needed to be in good shape, in order to come through the surgery all right. I just stayed focused, because I knew what the mission was. And it was worth it.
Ann: What do you remember about the time right after the surgery?
Greg: I woke up, and my head cleared, and I thought, "My blood sugar is normal. It's on the center line. It's not high, and there is no hypo in sight. Hypoglycemia is just not coming." I was amazed. My thinking was clearer than it had been for years. A nurse would test my blood sugar, and it would be 95, and I would think out of habit, "I'd better brace myself for a low blood sugar." And the low never came. I just couldn't get over it. I had normal blood sugar all the time, and never, ever had any more hypoglycemia.
It was three or four days before my stomach woke up, so at first I had only IVs and clear fluids. Then I began to be able to eat, at first just soft, light foods, then real meals. And still, I had normal blood sugar all the time, and never, ever any hypoglycemia.
Ann: What was it like when you first came home?
Greg: I came home seven days after the transplant. At first, I was weaker than I expected. I don't know where I got the impression I would be bouncing around like a ball. I could walk, but I was just inching across the floor at first. The first two or three weeks were painful. But gradually, the pain decreased, and my strength increased. Now, one month after the surgery, I have no pain. Even the numbness in my feet and calves, from neuropathy, is completely gone.
It's overwhelming to me, how much energy I have, now that my blood sugar is completely stable. I'm just starting to exercise. I'm not supposed to lift more than 20 pounds, so I'm just doing a little light walking for now. I have plans for a full exercise regimen. I'll begin with a very light routine, and work myself up.
Ann: Have you changed your eating much since you got your new pancreas?
Greg: Not really, not on a day-to-day basis. I learned to eat healthy for my diabetes, and now I want to stay healthy, so I can live a long life and enjoy it. As long as I already have a lot of good, healthy eating habits, I'll just keep it that way. I don't eat junk. I did go to a restaurant, and I had some pancakes with real syrup. But I didn't go hog-wild. I just had four medium-sized pancakes, and that was enough. I felt satisfied, so why eat any more?
Ann: What are your plans for the future?
Greg: I need some time to think about long-term plans. Before I had the pancreas transplant, I didn't think I would have a long life. I thought diabetes was going to kill me. Now I feel good, and I have energy, and I can begin to think about the long term.
About pancreas transplants:
Right now, pancreas transplants are usually done for people who are also receiving a kidney transplant. In other words, a pancreas is most often transplanted as part of a combination kidney/pancreas transplant. A few people, like Greg, who already have a transplanted kidney, are able to get a pancreas transplant by itself. So if you need a kidney transplant, or already have a transplanted kidney and would like to consider getting a pancreas transplant, you should talk with your transplant team about whether this could be a good choice for you.
In general, most transplant programs do not transplant a pancreas by itself into a person who has healthy kidneys. But this may change in the next several years. There is a lot of research going on concerning pancreas transplants and islet cell transplants. Furthermore, all of the insulin pump companies are working on creating ways to link up a continuous blood glucose meter to an insulin pump. Some of the companies are very close to developing a successful product, essentially an artificial pancreas. So even though today, most of us who have diabetes may not get the wonderful results Greg has had, we can realistically hope that in the near future, many more of us will be able to have truly normal blood sugar.
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If you or a friend would like to remember the Diabetes Action Network of the National Federation of the Blind in your will, you can do so by employing the following language:
"I give, devise, and bequeath unto the Diabetes Action Network of the National Federation of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230, a District of Columbia nonprofit corporation, the sum of $_____" (or "_______percent of my net estate" or "the following stocks and bonds:________") to be used for its worthy purposes on behalf of blind persons.
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