I had 3 islet transplants in 2002/2003 after having T1D x 42 years. I was off insulin completely for 2 years, then C-Petide began to drop. I went back on very small doses of humalog with meals, then eventually after an additional 5-6 yrs. I was back on 10 units Lantus and pre meal 2-4 units humalog. I went on a pump a year ago after 59 years!!
The most difficult adjustment after needing to go back on insulin, was that sometimes the insulin I was producing would combine with the exogenous insulin, with resulting hypo’s.
I still think it was worth it, and I figure it added a few years to my life, considering I took 50-60 units of insulin a day , prior to transplant, and I haven’t had much trouble with the immunosuppressants. I’m sure they have made advances in the 15 years since my transplants. Good luck!
I’m not following. What has the 50-60 units of insulin you needed per day have to do with potential longevity? Are you implying that if your requirements were much lower, say 25/day that that would translate to some lesser chance of an early death?
I’m not sure, but I believe 2 years of not needing insulin at all and staying within normal BG limits and normal A1C, probably adds a couple years, I might not have had, to my life. It just made sense to me that if I can control my diabetes with 10 units rather than 60, than that was an improvement. Perhaps not, but I am grateful for those 1 years of normalcy!
Some time ago the President of Sernova (based in Canada) was a guest here. He spoke of the islet cell research they were doing, and use of a “pouch” that is inserted in the body (in office procedure). Exciting stuff, imo.
What they were working on was inserting the pouch first until the body adapted to it, then adding the islet cells. Can’t speak scientifically about it, but don’t recall reading having to take any drugs. The last I knew, there was quite a bit of activity and interest internationally.
Just got news this morning that the FDA has approved clinical trials in U.S. for Sernova’s islet cell implantation. They will be looking at those with T1 diabetes and accompanying hypo unawareness. JDRF is also involved.
All these islet encapsulation approaches have failed so far because the oxygen supply within the capsule is inadequate, or the capsule itself becomes encrusted by the immunological response to it. Efforts have been underway since the 1990s to overcome these problems, which are in principle solvable, since they just require more sophisticated bioengineering solutions, but so far, nothing has worked. I like all such approaches better than those based on manipulations of the immune system, which are more biologically complex and more likely to have dangerous side-effects, since encapsulation is simpler and less risky.
First we need Endocrinologists to stop their love affair with Medtronic, so the docs will start being willing to work with us on other brands. I have to get a new doc if I switch from Medtronic.
