On Becoming Non-Diabetic

by David Goldman 

I’ve recently received a few emails from people asking about the hows, whys, and whens of getting a pancreas transplant. A pancreas transplant alone is not a very common surgery. In 2010, 350 were performed nationwide. In 1997, I was one of the lucky 210 people who was given the opportunity to have this operation and start fresh. At that point, my transplant center’s success rate (insulin free after one year) was 90%. I thought the odds sounded good, especially considering what I was going through. Most diabetics however don’t get just a pancreas transplant. It is more common to get a pancreas transplant when you also need a kidney transplant. Last year 850 kidney/pancreas transplant were performed in the U.S.

A little background: I developed diabetes at 18 months of age. By the time I was 21, I was suffering from diabetic retinopathy (rupturing blood vessels in the eye), which often leads to blindness. I already had developed high blood pressure and a little less than six years later I found out I had diabetic nephropathy (diabetic kidney disease). As a consequence, I had several surgeries on my eyes and the doctors were able to save partial vision in one eye. I had a kidney transplant that ended the kidney failure and that lasted almost 25 years until it failed about seven months ago.

After my kidney transplant everything seemed to be very good. This was in 1986 and it was when home blood testing for diabetics was just coming to the market. My doctors thought it would be a good idea for me to start checking my blood sugars regularly. This was due primarily because one of the anti-rejection drugs that I was going to be required to take for the rest of my life has a side effect of driving the blood sugar up. Not a good thing for a diabetic. Also of course, it’s a good idea for any diabetic to know where his or her blood sugar is at. When I started testing and found that my sugar was high, I would take more insulin which would drive my sugars down. Except then it would come rocketing back up anywhere from a few minutes to a couple of hours later. So, I was left with uncontrollable blood sugars. They yo-yoed up and down, day after day. I’d spend parts of each day recovering from an insulin reaction and parts of the day trying to rid myself of the nausea, tiredness, and twitchiness of high blood sugars. To simulate the feeling of having your blood sugar too high, quickly drink six cups of coffee and eat four packs of Skittles. You’ll get the idea.

Living like this was not just uncomfortable, it was impractical and had serious medical complications. I wasn’t doing my job as well as I knew I could, I felt lousy. Not a preferred way to live.  After discussing possible protocols with my doctors, it was decided that a pancreas transplant would be the best option. The other choice was an insulin pump. However, that is just a better form of insulin delivery. It didn’t really address my problem of rapidly rising and falling blood sugars. If successful, a transplant would render me as a non-diabetic and would slow down or halt all the progressive damage that was being done to me. One thing I should add. I’ve never had a fear of surgery. I always knew I would come out the other side of it better than I did before. So while I had a wife and young son, I didn’t feel I was taking a risk. Stupid assumption? Probably. But for me it was the only route.

So, on June 7^th of 1997 (Click here to read that story) I had a successful pancreas transplant and have technically not been a diabetic since.

So why don’t all diabetics get a pancreas transplant? There are several good reasons. For one, there’s the surgery itself. It’s a major surgery and has all the risks any major surgery has. A large incision is made in the abdomen and a second pancreas is put in. They do not remove your original pancreas. Besides insulin, the pancreas produces other important enzymes. When you’re a diabetic, your pancreas may not secrete insulin, but it does produce these other enzymes, so the original pancreas is left in. Then you have to take anti-rejection drugs the rest of your life or for as long as the transplant lasts. These drugs are very powerful and have a wide range of side effects. Plus, what the anti-rejection drugs do is make you immunosuppressed. Without these drugs your immune system would attack the new pancreas just as it does any other bacteria or virus that invades your body, and would render it useless in a matter of days. So, you take these drugs that weaken the immune system leaving you in a state where you’re less resistant to disease and infection and any disease or infection you do contract can be far worse because of your inability to fight it. Plus, you may go through all of this and the transplant might not work!

Given all of this, the decision as to whether or not you’re a candidate for a pancreas transplant is one you have to make with your doctor(s) and a transplant center that does pancreas transplants. Keep in mind that some doctors don’t know a lot about, and therefore don’t think of a pancreas transplant. I recommend that if your doctor says no, still consult with a transplant center. Getting more information and educating yourself can never hurt.

If it’s decided that transplantation is the right path for you, when to do it can be a tricky question. If you’re relatively healthy, no transplant center is going to do the operation. Most diabetics who receive a pancreas have already had some significant impact from the disease with possible indication of more to come – things such as kidney disease, retinopathy, coronary problems, or neuropathy. As I said above, a simultaneous kidney/pancreas transplant is twice as common as a pancreas alone.

There’s also the financial consideration. Many diabetics are uninsurable so a pancreas transplant seems out of the question.  But, if you’re a diabetic who needs a kidney transplant, Medicare will pay for a simultaneous kidney/pancreas transplant. They will also pay for a pancreas after you’ve had a kidney transplant, and in some cases, pay for a pancreas transplant even if you haven’t received a kidney.

So is a pancreas transplant right for you? A lot of your own research, input from knowledgeable doctors and soul searching will help you answer that .