Islet Cell transplant for T1?

Came across this…
Baylor Health in Texas apparently does this…
What do you know about this?
Ive had T1 for 22yrs… is this an option for me?

Here’s the site

I think there are a few folks on TuD that have had successful transplants, so hopefully they’ll see this post and comment. I think that in order to qualify, you have to have difficulties managing your blood sugar (I guess what they would consider “brittle” diabetes). And you have to take immunosuppressant drugs the rest of your life. So there is that - would you rather have to fear every little sniffle/cough or would you rather just deal with the insulin injections?

Its only a cure, to me at least, if I don’t have to replace the insulin with other drugs.

Hi Kayla

I would agree with other commenters here that if you’re basically in good health, and not suffering from frequent hypos then the benefits of an islet transplant might be outweighed by its risks. I think I’ve said it before here (I am an infrequent poster!) but basically you’d be swapping one set of problems (blood glucose tests and injections) for another set of challenges (you’d still have to do blood glucose tests and inject insulin, though less frequently, but you’d also have to take powerful drugs to suppress your immune system).

As far as I’m aware, transplant patients are generally continuing on a small maintenance dose of insulin to help support their new islets so it may be less likely that you’d come off insulin entirely.

This isn’t meant to sound negative - islet transplants are fantastic and can be life-saving for people who’ve had recurrent hypos and who’ve lost their hypo awareness symptoms (basically they can’t tell when their levels are dropping and so are in danger of losing consciousness if they’re unable to reverse the hypo early enough). For people in this situation the risks and benefits are balanced more towards transplantation being beneficial.

Generally though, if someone is having serious problems managing glucose levels there are a number of things that may be worth investigating before going down the route of transplantation - people can undergo hypo awareness retraining under medical supervision, may benefit from using an insulin pump, might have other hormonal problems which also need addressing, or might have another underlying condition (eg gastroparesis) which can affect the way the body uses glucose.

Best wishes,

Several of the Med Centers doing Islet cell transplant are using minimal and in some cases no immunosuppressants for transplants. Some are also using encapsulation technology to encase the Islet cells and then they do not require any immune system destruction to work w/o being attacked. UCSF is one that you can hit from the web and read about the stuff going on there.

My hope is for skin cell stem sell switches to make your own Islet cells from your own tissue. The animal testing has succeeded with this technology.

That would be cool to have a scrape, bake, grow and go solution to the big D.

I’ve been T1 for 25 years. My kidneys recently started giving me grief. I heard from my nephrologist if I get a kidney, they will also give me islets, so it is an option for me. There are more people waiting for kidneys than islets. Also, if you have someone you know who is giving you a kidney, they will try to coordinate that transplant with the cadavaric islet transplantation. You would not have to take additional anti-rejection drugs because of the islets. The drugs for a kidney transplant are long-term a lot less strong than those from like a lung or heart transplant, but they are serious and can have serious side effects. It is better to not get a transplant at all, but I would love to not have to lose sleep over blood sugar.

I’m currently 4 months into screening for an islet cell transplant at UIC - Chicago. Islet cells, I’m told, are really reserved for people at this point who have hypoglycemic unawareness-people who wake up in their backyards because they drove through the back wall of their garage because they had a severe low. I’ve also been diabetic for over 22 years and I cannot feel a low until it is below 40 and often not at all. Hypo unawareness can be very very dangerous and very lifethreatening. Therefore, the benefits of getting the islet cells would outweight the risks of the immunosuppression drugs. However, if your diabetes is otherwise controlled on insulin, the risks probably would not outweigh the benefits. It’s a very hard decision, but you have to do what you feel is best for you.

Many people think that islet cells would be better than insulin. I often hear “Anything has got to be better than insulin.” I would whole-hardedly have to disagree. Although I’m in the beggining, and I think this is the best choice for me, it will help me, but it will not be easier. In fact, this process is very difficult, time consuming, and not to mention emotional. I’ve driven to Chicago (3 hours each way) four times in the past two months. They have poked me millions of times taking so much blood-running every test imageinable. If there is anything wrong with you, they will find it and you’ll either have to get that taken care of immedietly, or you may be excluded from the test even if you do get it taken care of depending on what it is. I have spent hours in the hospital already with all of the xrays, blood draws, ultrasounds, physicals, ect. not to mention the recording of my blood sugar 7 times for the entire study- the pneumonia, h1n1, flu, and hepatitis vaccines I had to get-the tests for chicken pox, tb, hepatitis, kidney function, sensitivity to foreign tissue, the days of no eating or drinking after 9pm, the peeing in a cup and bringing it in, the 7 am hospital visits ect. ect. and this is the beggining. I’m sorry if I sound too negative, but these are just some things to think about. This is an alternative option, definitely not an easier one. Goodluck!

I had an islet transplant through UIC. May will be 4 years since my transplant and Sarni is correct in saying that it isn’t an easy process. I"ve been insulin free since July 2006 but that was just a bonus, my ultimate goal was to eliminate hypoglycemia unawareness and hopefully minimize further development of diabetes complications.

In addition to the testing that Sarni mentioned there are as many, if not more after the transplant. the first few months are a constant barrage of medication adjustments, doctors appointments, and test, tests, tests. After about four months the appointments taper down to once a month and by the end of year every three months. I chose to participate in the 5year follow up so I will continue to make the 5 hour trip to Chicago at least every three months for another year and a half.

I know people that have dropped out of islet transplant studies, not because of lack of results but because of the time and commitment involved. I also know people that had graft rejection and are back on insulin again. It really has to be something you are committed to, even after you have the results you wanted in the beginning.

I"m glad I did it, I"ve had really good results, received probably the best and most through medical care I"ve had in my life at UIC. for those reasons I"d do it all over again if I had to, but it’s not necessarily an easier road.

It never hurt so contact the center you are looking at and getting more information about their study. You might decide you want an islet transplant afterall, you might not, but at least you’ll have made an informed decision.

good luck