My first islet cell transplant occurred on February 1, 2002 at Fairview-University Hospital at the University of Minnesota. I was the first person in the US transplanted as part of the expanded Edmonton protocol.
The second occurred at the same place on May 10, 2002.

I was the first US transplant in the Edmonton multicenter protocol but islet cell transplants have been occurring for quite a while. The latter are protocols that specific centers had initiated independently (e.g., the University of MN has been performing varieties of islet cell transplant protocols) to demonstrate the viability of islet cell transplant. These protocols are performed on a small number of patients. The Edmonton multicenter protocol is the first protocol to attempt to perform a study across several qualified centers to determine, among many other issues, that protocol results can be uniformly replicated in a larger group. Please investigate the Links page for more information.

The criteria for any islet cell study are very selective but I was able to meet nearly all of them. One key item was a weight limit of 70-kg (155 lbs) for the Edmonton study. After I found out about that restriction, I set about losing the 23 lbs over the next three months. In October 2001, I received a call for an evaluation at the University of Minnesota. I had also been contacted by two other centers. I researched all of the centers and was most impressed by the University of Minnesota. I was unaware of the accomplishments at the UofMN regarding pancreas and islet cell transplants prior to my research. I am very happy that I performed the diligence in performing this check because the pancreas and islet program that Dr. Sutherland and Dr. Hering have crafted is very impressive. Eventually, I had to make a decision to commit to one center. Although I am sure that all of these centers are efficiently run, there was something special about the DIIT/University of MN that appealed to me. In addition, through a unusual twist of fate, my sister, her husband, and family live in the area.

The care, concern, experience, and expertise that all of the physicians and staff at the DIIT/University of Minnesota have consistently displayed validate my decision. Based on my experience, this is the best medical care that I have ever received.

I do not wish to exclude anyone but I must name a few people who were instrumental in this treatment. First, and foremost, is Dr. Bernhard Hering - as dedicated and selfless a physician as I have ever encountered. He was always available when I needed his expertise. Right behind him are my primary clinical coordinator, Kathy Hodges, and the other clinical coordinators, Carrie Gibson and Kathy Duderstadt. They would follow my tests and condition and call whenever there were issues. They offered advice and helped ease my concerns about when I would get called for a transplant. Also, the islet procurement and isolation team. They work behind the scenes but their assistance made this possible. My lifetime gratitude to all of the above people, the nurses, staff, and everyone else for making this happen.

Two other concerns that encouraged me to enter were the complications associated with diabetes and whether hypoglycemic unawareness could result in some untoward event involving innocent people. This treatment would address both of those issues.

If it ends up that my data will also help facilitate this treatment for diabetics, it will be an honor to have contributed.

Right now I take the immunosuppressants Rapamune (Sirolimus) and Prograf (Tacrolimus). I also take Mycelex Troche, Bactrim, and Gancyclovir as preventative/support medication. These support medications will be removed over the course of the first year after transplant. In addition, I am taking some OTC vitamins/minerals: Magnesium (improves insulin sensitivity), Chromium (potentiates insulin receptors), Antoxidants, and Green Tea extract. This is a big change for me since, prior to the transplants, I did not take any medication other than insulin. Only very rarely would I take OTC vitamins, aspirin, anti-inflammatory, or cold/fever medication.

I have had periodic mouth ulcers from the immunosuppressants. That was expected and I learned to treat these when I could (thanks to my dentist, Dr. Levin, for helping out).

I had a fever in June 2002 (the cause of which has not been determined) and my white blood cell count became dangerously low. As always, Dr. Hering and the staff provided prompt treatment and advice. I went into isolation at a local hospital and received IV antibiotics and a few doses of Neupogen until my WBCs had risen sufficiently. I have been doing fine since then. Another low WBC in Dec. 02 resulted in another dose of Neupogen.

Some other periodic side effects: edema in my ankles, memory loss, rashes/itching, headaches, acne, and back pain. The appearance and intensity of these side effects appears to have a correlation to with a higher concentration of immunosuppressant levels in my blood. (See question below regarding blood tests).

These side effects have not led me to question my decision to enter this study. My quality of life has improved immeasurably since the transplants even factoring in side effects.

I had blood tests (CBC, etc.) done 2-3 times per week for the first three months. It has been weekly since that time. Two special draws are done for Prograf (tacrolimus) and Rapamune (sirolimus) once a week with the regular blood draws to determine the levels of these immunosuppressants. The targets are 4-6 for tacrolimus and 10-12 for sirolimus. If the readings are outside these ranges, I will be contacted by DIIT to alter my daily intake of these drugs.

Up until month four after my second transplant, I was traveling biweekly to the Clinical Research Center at the DIIT/Fairview University Hospital in Minneapolis, MN. After four months, my travel to the center became monthly. For me, this study ends one year after the last transplant. I have enrolled in a long-term follow-up study. This will not require travel to Minneapolis. It will be coordinated between the DIIT staff and my local physician.

I have been committed to frequent exercise and healthy eating for a long time and I believe it has helped delay the complications. I feel great and I am in good physical condition.

But, I have had times where I did not exercise for a while and/or ate junk. I dimly recall eating an entire bag of chips and a container of dip. Likewise, on occasion, I have frequented a burger/pizza/fried food place. However, my foray into those areas was an exception and not the rule.

Mostly, I eat a lot of vegetables, complex carbohydrates, fruits, and moderate amount of protein (meat, chicken fish, and cheese). I could become a vegetarian but I enjoy meat on occasion. This diet has worked well for me and I intend to continue using it. Other important items to consider are portion size and snacking between meals. I choose moderate for the former and I rarely do the latter.

I have been able to spread this information by presenting at JDRF functions, group functions, and through the National Kidney Foundation. I am hopeful that I will be able to participate in the World Transplant Games or the US Transplant Games.