Anyone here ever had or contemplated a islet transplant.
There is a hospital in Los Angeles area that is doing them in a clinical trial. along with some new drug to see if they last longer.
I was heavily debating doing it and I decided to see if a hybrid loop was going to work in the short term first.
I think it would be awesome to dump all the gear for a once a day anti rejection pill. I know the meds have side effects etc. I just don’t know if it is worth the risk. I wish I could talk to someone who has done it to get a full picture.
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I have a girlfriend in the UK who had a double transplant earlier this year, kidney & pancreas. Her overall health is doing much better, but she’s terrified of the covid-19 stuff, since she’s on immune-suppressants. The drugs are really hard on her, too.
It’s also essentially a waiting game. Since she’s Type 1, her immune system is still going to attack the new pancreas. She’ll be back to being a diabetic again in like 1-5 years
I know that’s a little different than just an islet cell transplant, but I don’t know how much so.
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Anti-rejection are not a step up from diabetes and can actually be worse, so its something you want to think carefully about. In general, in the US, they typically dont do pancreas transplants, for instance, unless you need a simultaneous liver transplant and your gonna die without transplant anyway.
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Yes the islet transplant is much less invasive. They just infuse them via an iv. Into your hepatic vein where they take up in your liver. So there is no surgery, but still there is everything else.
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We have a past member who has had tow transplants as of this day. Each worked for a a few years.
If it was me, I’d give it a go. If the procedure is non-invasive, what do you have to lose? If the anti-rejection drugs cause you too many problems, just stop taking them, let your immune system do it’s thing and then go back to what you’re doing now. If it works (remember it’s a clinical trial), what a great step forward for you.
There’s no way I would do it if it was an invasive procedure.
About 10 years ago I listened to a speaker at a JDRF meeting talk about his experience after a kidney-pancreas transplant. He had been diabetic for over 50 years, diagnosed at a young age. He said he had no idea how sh**ty T1 felt until it was gone.
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Well it’s not surgery but they gotta go in through ur hepatic vein so it’s something. But a clinical trial is also free. I don’t know how much longer I would be a candidate since I’m 54 already. It would be crazy weird to not inject insulin or wear a pump or deal with testing. I can’t really even imagine it.
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Anti-rejection drugs pretty dramatically increase cancer risk, so I can’t imagine choosing to go on them when not otherwise necessary, especially as a relatively young person who needs my body to last many more decades. And if that’s the side effect that becomes problematic, might be too late to just stop the meds by the time you find out it’s there. Diabetes sucks, but I’d rather have diabetes than most cancers. That said, if I needed a transplant otherwise, like people getting combo kidney/pancreas ones do, seems worth a try.
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5 years is the most you will likely get. During this COVID situation would be simply a no starter for me. Get past this first. I was at the University of Miami for a similar plan. The islets were to be placed on the OMENTUM and then put back in place (this lasted longer than 5 years about 35% of the time). I would have to get rid of my cat too (that is in the teeny, tiny super fine print) but I was disqualified because of a prior laproscopic procedure from my youth.
Good luck with your decision.
Up to 5 years with no Type 1 is better than up to 5 more years with Type 1 in my book.
There is an encapsulated islets study, that I have not hear back from.
I would do that because there are no anti rejection drugs.