Michael Schofield was diagnosed with Type 1 diabetes when he was 20 years old. At the time, he was working as a commercial pilot. But airlines won't allow diabetics to pilot a plane so he had to find another line of work. Now 52, he is a director of sales for AT&T. Though he lives in Scottsdale, AZ, Schofield signed onto the Pancreas and Islet Transplant program at UCSF and underwent a transplant in April 2012.
You've lived with diabetes a long time; was there a point where your symptoms started to worsen?
I started to suffer from hypoglycemia unawareness quite a bit. I've always been able to withstand very low blood sugar — one time it was down to seven and the paramedics were in disbelief that I was still conscious. But a few times, I did pass out. I do a lot of cycling everyday, trying to keep fit. If I didn't eat constantly when I was cycling, my blood sugars would dive. But they also started to drop drastically for no apparent reason. Even though I wore a glucose sensor, sometimes my blood sugars would drop so fast, the sensor could not keep up. Over the last seven years it began to happen more frequently.
It's a very scary situation to be in — you're confused, so confused that you can't help yourself. A lot of times I was lucky enough to have friends with me, and they just knew when I went quiet that something was not right. My wife knows that too. But you can't always be with your spouse. When I'd fly and travel for work, it was always on my mind: How are my blood sugars? You can't live like that.
How did you come to the islet transplant program?
I was always passionate about a possible cure because I always wanted to get back into the pilot's seat. Many years ago, I heard about a trial where researchers were implanting a kind of membrane filled with islets in the stomach wall. I tried to put my name in, but they were only taking people who had kidney disease. Then about three years ago, I was at a Starbucks and decided to look up on my iPad how the technology was going and saw that they were now doing islet cell transplants. I filled out the clinical trial consortium application thinking my chances were very slim. But then UCSF got back in touch. It was the closest center to Scottsdale. After going through many tests, I was accepted onto the waiting list. It took about 18 months of going back and forth.
What kind of hurdles did you have to go through?
I had had a heart attack in 2009 and was taking Plavix (to prevent blood clots). But transplant candidates can't take Plavix, so I called my cardiologist and told him I wanted to stop taking Plavix. He agreed to take me off it because my heart pumps pretty well, I cycle and I'm fit.
I understand your health insurance paid for your transplant. That's unusual, isn't it?
I was the 875th islet cell transplant and none had ever been paid for by private health insurance. After I was put on the waiting list, someone at work pointed out to me that my insurance covered transplants and experimental treatments, including islet transplants. But I had to get approval from the FDA [because islet transplants are only being done in federally-supported clinical trials.] Joan McElroy [a nurse coordinator at UCSF's transplant service] contacted the FDA to ask if it would allow the insurance company to pay the costs of the procedure. The FDA came back within a week and said that it would.
How long did you then have to wait?
A month or two later, I got a call from Joan that a pancreas was available. Then it turned out someone else needed it more than I did. I was fine with that. That was on a Saturday and the following Monday, I was driving to work and the phone rang; I looked at the number and I knew it was Joan. My heart skipped a beat. Joan said another pancreas was available. That evening I flew to San Francisco got there at midnight and started taking the immunosuppressant drugs.
What was the procedure like?
It was quick — I think 45 minutes to an hour. The whole procedure was painless. I got taken care of very well. At UCSF, the overall administration of guiding me through the pre- and post-process has been phenomenal.
Were you nervous about it?
I was apprehensive and wondered whether I should get the islet cells or just live with diabetes. Because you read about the side effects of the immunosuppressant drugs and about people who did do it and weren't cured or still are on a small amount of insulin. I was willing to accept taking a small amount of insulin. In retrospect, I absolutely made the right decision.
Are you still taking insulin?
No. Other than the fact of my three children, it's the most incredible thing. It's like a gift that keeps on giving. It's euphoria not having to take insulin anymore and not having to worry about my sugar levels when I'm bicycling. My sugars stay absolutely perfect. I eat and my sugars go to 120 and then they go back to 100. I keep the sensor with me, as a point of pride. I don't need to, but I just want to look at my sugar levels and see what they're doing.
Have you had any side effects from the immunosuppressant drugs?
When you first go on them, you do suffer flu-like symptoms because your body is trying to fight off those islet cells. That lasted for just a couple of days. For a while I used to get these canker sores beneath my tongue. But then they lowered the dose of the drugs and I'm not getting those anymore.
How has the transplant changed your life?
I've lost 32 pounds now, 20 of that in the first two weeks after having the transplant. My glucagon and islet cells are working together now — it's a perfect synchronized machine inside my body. So I'm losing weight and going back to the way I was when I was 20 and first diagnosed with diabetes. Originally, the doctors thought I would need a second transplant to get enough islets for my body mass. But I came off of insulin and as of now, it doesn't look like I will need a second transplant. I think that may be because I lost so much weight so quickly that I’m not putting as much strain on the transplanted islet cells.
Have there been any other benefits from the transplant?
I've been going to physical therapy for therapy on my left shoulder because of an accident a few years ago in which I was hit by a car; diabetes tightens the muscles in your body, so you're not as flexible. Since I've gotten the cure, the physical therapist in the last two weeks said he was amazed at how agile I am compared to before the transplant. He said I had a 30 to 40 percent improvement in how far I can move my shoulders and arms. He said it is amazing the effect it has had on my body. I had difficulty swallowing some foods like chicken and steak but that problem has completely disappeared. After the "cure" you start to realize the issues that you once had and don't anymore…Amazing!
You call it a cure, though doctors take pains to say that so far the transplant are not a cure, but only a temporary treatment for diabetes?
It's a matter of faith, right? Or a mind over body thing. Whether it's two years, three years or whatever, it's a holiday for my body.
Interviewed by freelance writer Susan Freinkel.
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Post-Pancreas Transplant Fax: (415) 353-4183