“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.”
I must buy this book and hope you can get another transplant; it may take better next time. There are the transplants without the immunosuppresant drugs in the future. Very sad that your wife would leave you citing that reason….your health should not be the reason she left you. I believe she was probably using that as an excuse. If that is true, she is a coward and not worthy of your love or respect. There are many women who stand by their man and there are far worse health issues than Type 1. I hope you find a woman… Read more »
WOW ! your ARE brave. It sounds like something that would have been really hard on a relationship. All families should be offered ongoing therapy. I am a RN & have type 1 diabetes and I have always thought that the family of a patient with chronic disease is much more stressed and need special care. The family can do nothing but watch as we suffer and they can’t fix it. I would not want to be in there place. Thank you so much for helping the reseach into finding some kind of cure for this disease. I don’t need… Read more »
Traci told me that for many months it had hurt her to see me in so much pain from my medical problems. what a load of crap! If she had a heart she would have supported her man and stayed by him – in sickness and in health – she’s just making an excuse to leave. Ditch her ! May be her sister is free … and of better character ;D
This brought tears to my eyes. I understand fully what Alex has been through but in a different order. Diabetic since I was 10. My wife of 20 years decided she couldn’t take living with the worry of me anymore. Our marriage of 20 years dissolved. The tipping point for me was an accident because of a low and once I decided the anitrejection drugs were better than what I had. I signed up. In 4 months my life turned around. I have now been insulin free for 7 months and all tests look promising. People don’t realize the stress this disease puts… Read more »
Thank you for sharing. After 50 plus years as a Type 1 and having participated in two longitudinal studies I can empathize with your plight. I still believe that there may be hope. Denise Faustmans immunological work at Mass General is showing promise,www.faustmanlab.org
Thanks for sharing your story, most of us don’t realize how much work goes into a trial, it’s enough work to manage D everyday! Keep on going and overcoming, everyone has their trails in this life, and its never fair. Sounds like your being the best person that you can be and thats what matters in the scheme of it all :)) Sorry for your personal loss, but you can’t really say if it would have happened anyways, sometimes we think we know someone :( I am a nurse and I see a lot of love and compassion, love ones who sleep… Read more »
I have never read a more courageous and moving account of the struggle to beat the disease, the personal cost of this struggle, the failure of the cure, and the return to the old methods of controling Type 1 diabetes. It causes everyone to ask would he/she take the risk, and be willing to pay the price on all levels. Alex’s journey, as described, conveys strength but arouses deep questions.
Thank you for sharing your story. I wish we had a better cure than islet transplants. I wish we could cure autoimmunity. I wish we could regenerate beta cells. I wish encapsulation (no immune surpressing drugs required) was available. Not in a trial, but at down the street the local hospital. I wish I wish. I suppose we are all ahead of our time, waiting for a cure. It must have felt amazing to eat a normal healthy meal and feel actually well, healthy. No sudden surges in BG, no spikes, no dips, no swings. People take this for granted.… Read more »
“Now I knew how regular people felt after they ate a sandwich. I considered it a miracle.”
That made me cry. Because I would love to know what that feels like. Taking care of my diabetes is so all-consuming that I sometimes wonder what I would do with myself if I didn’t have to be thinking about it every moment of every day.
I also worry that my health will be a hurdle in a long term relationship. Thank you for sharing this.
Wow. I admire you. I’m sorry that things did not work out for you and your wife but I greatly admire what you’ve done and I think your answer to your friends question was surprisingly extraordinary.