“Knowing what you know now,” a friend of mine asked me two years after my islet cell transplant, “would you do it again?”
I remembered the call that came on a Saturday. They had found a matching donor. The cells were being processed at the University of Pennsylvania and would arrive for the transplant later that day. My wife, Traci Steele, packed a bag and we left for the hospital.
It was an experimental procedure, part of a clinical trial to cure type 1 diabetes. At the hospital I would receive massive doses of immunosuppressant drugs and the next day, or perhaps Monday, doctors would infuse insulin-producing islet cells from a cadaver pancreas into my liver. Once there, if everything went according to plan, the cells would make insulin for me. I was one of only about 300 people in the world to have done this.
“Are you sure you want to do this?” Traci asked me as we sped up Interstate 40 to the University of Virginia hospital. In nearly thirty years as a diabetic I’d gone to hospitals in an ambulance so many times I lost count. This time it was in my own car. I couldn’t add up how often I’d gone into hypoglycemic comas. One lasted three days before friends found me. I had given myself more than 10,000 daily injections of insulin. Those figures were trivial compared to what it felt like being a type 1 diabetic. I was always on the defense against the disease . Now I had a chance to go on offense. Was I sure?
“I’m sure,” I said. “I’m positive.”
Traci and I were already tired from the study. At the start were the screening tests: Eye tests, kidney tests, a dental exam, tissue typing, kidney screening, and a chest x-ray. I passed them all, but the chest x-ray revealed a mass in my right lung so we had a cancer scare. It was benign. Then we were told we would have to come up with thousands of dollars for a particular round of medical treatment after the transplant. We didn’t have the money. We couldn’t raise the money. The trial came to a halt. Then, a few months later, funding came through and the trial was back on.
I underwent more intensive tests during an overnight evaluation at the hospital. I passed those tests too. The mass in my lung, however, even though it was benign, could prevent me from becoming a subject. Traci supported my decision to have surgery. Six months later I had a lobe of my lung removed and my name was placed on the national registry of organ recipients. Then the trial came to a halt again.
The protocol for the study had to be revised for the FDA. That took a year. Then a doctor on the team questioned whether I adequately understood the risks involved. I underwent an intense psychological evaluation. I passed. I was cleared to be the next transplant recipient.
After Traci and I got to the hospital that Saturday I was put on IV anti-rejection drugs in preparation for the transplant. The drugs caused a severe reaction. My fever shot up to 104.7. An alternative drug was tried and we waited. I had to recover in time to use the cells or they were worthless. Doctors dressed in surgical gowns came in, checked on me, and stood around. I tried to will my fever down. It broke just in time.
The transplant went perfectly. Every day for three months I took high doses of oral immunospressant drugs. Twice a week I had blood drawn before going to work. Traci and I drove 150 miles round trip twice a month for IV immunosuppression. The drugs made me feel listless and sick. I was difficult to be around. We also had a massive volume of work to conduct as part of the study. The constant monitoring of drug and blood sugar levels, record keeping, and worrying about every little twitch and sniffle added to the stress.
The islet cells, though, were working. My insulin dose was cut in half. Traci and I were looking forward to the three-month, post transplant mark. The medicine would be reduced and I would need fewer tests. We could relax. I would feel like myself again. Shortly before the three months were up they located another matching donor. After a second transplant the high doses of drugs and testing started again.
Seven months after the second transplant I decided I would completely stop taking insulin for one week. I just wanted to see if I could do it. The first day off insulin I ate a ham sandwich. My blood sugar didn’t go up. Now I knew how regular people felt after they ate a sandwich. I considered it a miracle.
The clinical trial had been a success. Traci and I could finally see the payoff for all the work. We could look forward to a future without a cloud of sickness hanging over us. We had defeated diabetes.
Two weeks later, one day after breakfast Traci told me that for many months it had hurt her to see me in so much pain from my medical problems. She didn’t believe those problems would ever be resolved. She said she didn’t want to be married to me anymore. She moved out that day and our marriage was over. A few weeks later the islet cells in my liver ever so subtly began to fail. Six months later I was once again taking insulin every day.
I didn’t answer my friend so he asked me again. “If you knew now everything that was going to happen, would you do it again?”
“Don’t be ridiculous,” I said, “of course I would.”
Alex O’Meara is the author of the book, Chasing Medical Miracles: The Promise and Perils of Clinical Trials. For more about Alex visit alexomeara.com. For further reading on clinical trials in general and on diabetes see: http://online.wsj.com/article/SB124718276289720211.html.