I am writing this blog in hopes that I can share my experience of having an islet cell transplant with anyone who might be contemplating this option, or with anyone who is just interested in any part of this process. It has been a major life experience for me, and I am still in the beginning phases.
I think it is important to start at the very beginning, but until I get up to real time/date, things will seem somewhat out of order due to the nature of blogging. I am currently on day 11 post transplant.
I first became aware of islet cell transplants about 10 years ago when they were first performed in Edmonton, Canada. The newspapers covered it extensively for the first month or two. It truly seemed like the path to the cure. At that time, all the excitement was about longer acting insulins and the insulin pump. Those seem like just crutches. A transplant seemed much more hopeful of a long term success.
Skip forward about 10 years, I am now on the pump, a continuous blood glucose monitor, and am also injecting Symlin. I am reading alot about all of these things, including some blogs that I found very helpful. I happen upon some new research in which pig islet cells might be transplanted into humans. This catches my eye because I have a profound interest in pigs. I go to the website and find the DIIT at the University of Minnesota. They are actually performing islet cell transplants. I fill out a short form on the website asking to be considered as a subject in a clinical trial. A few days later, I hear that I might just be a candidate and they will be sending me more forms to fill out and to circulate to all of my doctors. Wow, I am amazed!
In the meantime, I decide to enhance my what I believed to be a slim chance by applying to other centers that I had found in the meantime. So I sent my applications to the Mayo clinic, and two sites in Chicago because they are so much closer to home, and I learned that there are many post transplant checkups that have to be performed on site according to protocol. The forms were all very similar, and all four centers seemed interested in me as a candidate. They are all looking for patients who have a very difficult time managing their blood sugars on a daily basis, but are otherwise quite healthy. It also helped that I am small in size, thus needing fewer islet cells.
The decision was very difficult. All of the centers have very personable front people who were very enthusiastic about what they could offer. I really felt that I was in a win/win situation. In the end, I decided on U. on Minnesota because after reading as much as I could all over the internet, It seemed that Dr. Hering was at the forefront of the field, and that U. of M. seemed to be getting the best results with the success of the transplants. So I decided to make that my first choice and just live with the travel time and expenses.