Islet transplantation
I was one of 36 people selected to participate in the Canadian Edmonton Protocol at the University of Minnesota. I received two sets of islet (beta cell) transplants. I was insulin free for one year and that was wonderful. I was required to take immune suppressants for five years to prevent rejection. The latter have several side effects many of which can be quite severe. In my case, I had severe, persistent mouth ulcers that made my new non-diabetic diet far less enjoyable than it might have been. However, midstream my immune suppressant regime was changed and for three years I had no major mouth ulcers. After the one-year honeymoon of no insulin, I was required to take one daily insulin injection of Lantus and maintained normal blood sugars. From 2003-2008 I had NO hypoglycemic events. That was the best part of this treatment. I never worried about having hypoglycemia no matter what I did. My islets apparently died and I returned to full-fledged Type I DM in 2008. I would love to try the Islet Sheets and hope they will be available for humans shortly.
Replies to This Discussion
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Permalink Reply by Froglvr on -
That sounds wonderful and I hope it becomes available to everyone. I can identify with the side effects of immunosuppressants, as I received a renal transplant in January and am on the list currently for a pancreas. I am taking Prografa and Myfortic for rejection. I take an antibiotic and an antiviral for bacterial and viral infections and although I didn't need it after the first month (did not experience mouth ulcers) was prescribed Nystatin swish/swallow to prevent ulcers/thrush. Were you given preventative treatments as well as the immunosuppresants?
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Permalink Reply by Donna on -
Yes, I was put on many "preventative" treatments such as the ones you mentioned. My doc was real big on "naturapathic medicine " (I think that is what it is called) so I took lots of different vitamins and minerals. My local pharmacy that compounds medications was finally able to come up with a medicine that helped with the mouth ulcers. The people in the research team were no help at all on that problem. They recommended a horrible medicine that burned the ulcers in my mouth so the treatment was more painful than the ulcers. I hope you do well with your transplants. It is a big step that requires lots of care.
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Permalink Reply by Robyn on -
I can't imagine how nice it was to run normal blood sugars. Hope I will experience it someday.
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Permalink Reply by Jen on
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I have heard somewhere that no islet cell transplants last longer than 5-10 years because the autoimmune process that caused type 1 in the first places comes back and kills them off again. Anyone know if there's someone who has had transplant and had it last 10+ years (or have they even been doing them that long)?
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Permalink Reply by Steven Ercolani on -
Out of curiosity, do you think the benefits of the transplant are worth the side effects of the drugs to suppress your immune system? Since I was diagnosed somewhat recently, most of my life, I never gave insulin and carbohydrates a second thought. Now these things are a huge part of my life, but I'm not sure if I would trade diabetes for another set of problems.
I'm just wondering what your take on this is?
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Permalink Reply by rachel on -
Great question Steven! I was diagnosed 5 years ago, and at first I was ready to try anything just to not be diabetic anymore. Now that I've lived with it for five years, and i see all the novel therapies and treatments that are being looked at that DON'T require immune suppression - I'm glad I waited before jumping on something that requires all those other meds. Insulin is not, of course, a cure - but it makes life tolerable until something better comes along. I have my fingers crossed for stem cells too, but hope that it can just be in the form of a therapy that doesn't require the anti-rejection meds... - R
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Permalink Reply by Donna on
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yes, I thought it was worth it. I was so happy to be free of hypoglycemic unawareness because it freed up my life considerably. I may have had more side effects from IMo's than some other people.
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Permalink Reply by Kathy on -
Islet transplants can last 5-10 years. I know of a few who are about 10 years out and several who are over 3 now. I am at 22 months and am doing well. The immunosuppressants do have some side effects, but are not as difficult to manage as the side effects of insulin. Right now, I have the best of both worlds, no insulin and no side effects. To hear from other islet cell recipients go the the facebook page called Islet Cell Transplant Recipients. Its a great site to learn first hand what its really like.
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Permalink Reply by Froglvr on
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Thanks Kathy I will check out the page. I had some gastrointestinal side effects initially after transplant that have totally gone away with a dose adjustment. My renal transplant obviously was not by "choice" but prior to my ckd, I had considered islet cell transplantation and often think if I had, I might not have progressed to have any kidney disease at all. If I'd known then what I know now, I definitely would have "jumped" at the chance for islet cell transplantation.
Congratulations on your 22 months. Do you celebrate your anniversary?
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Permalink Reply by Gary on -
If all goes well the future will be either encapsulation (LCT) or islet sheets for transplantation. Both proceedures will not require any anti rejection drugs. I doubt either proceedure will last more then a few years but its still a hell of alot better then the minute to minute hell we live with today.
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Permalink Reply by Kathy on
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I do celebrate both the anniversaries of my transplant and the date that I got completely off of insulin which is 2 months later. I agree about LTC. The pig islet cells will be more plentiful and the encapsulation will not require immunosuppression. They might not last as long, but the procedure to insert them is not too intense, so boosters would not be too horrible.
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