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Islet transplant - anyone had one?
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<blockquote data-quote="LizLola" data-source="post: 2631027" data-attributes="member: 77409"><p>Hello, all! </p><p></p><p>Yes, I believe they are still doing them. They are not a cure, and as I understood it at the time (this was about 8 years ago), some work better than others. Some people get good insulin amounts and become basal and bolus free for some years - as the transplant goes on, in later stages, they may need to supplement. five years was the given life at that time, although the longest surviving transplant was 16 years according to a paper I read - the date at that time was 2010. So things will have moved on, presumably. But eventually the islets degrade and cease to function. Then of course you would need more put in - and the problem with that is that you would get even more antibodies to another donor. The more antibodies you get, the more likelihood that any future donor organ will survive, and it will be come increasingly difficult to find a donor who will fit. So what if you need a donor kidney, because your kidneys fail? If you are younger, this is definitely a consideration. </p><p></p><p>The other thing that put me off was the drugs. I was warned that the drugs are as bad as those given for chemotherapy in their toxicity to the body. I joined a few transplant Facebook groups and just observed all the problems they had. They are myriad. Strange infections you will never have heard of - requiring hospitalisation and v strong antibiotic drips. Ordinary infections you will have heard of requiring the same. Your skin becoming covered in warts - no way to get rid of them. Rampant yeast infections. Cancer - of all sorts, as your immune system which mops up mutant cells usually is depressed. Particularly skin cancers. You have to stay out of the sun. You will be very prone to Covid. Basically - yes, you swap one lot of problems for another lot of, well, really quite a lot worse problems. I decided that rather like false teeth not being a replacement for your own teeth but being a replacement for nothing at all, a transplant was only to be approached if there was no other way of sustaining life - ie kidney failure. I wondered, reading Antje77's post above, just what 'unrelated' issues the Dutch transplantee died of. </p><p></p><p>It might be that islet cell transplants have dropped out of favour because they likely to have been offered to people like me - healthy otherwise, just no warning symptoms of hypos, and of course the brilliant new pumps such as the Tandem T Slim (I tried that, did not like it at all) and the 780 (brilliant pump, much better) may have filled the gap in keeping people safe from night-time hypos in particular. </p><p></p><p>What I don't like is that even with the 780 unless I eat a very restricted diet I still go high, and at the minute I have a brain problem (pulsatile tinnitus, more common in type 1 and with people who have protein C, caused by the joining of veins to a artery in my head). This has caused a general shrinking of my brain - which could be a precursor to dementia. But it could also be caused by high blood sugars. So I am looking at ways to try and curb any high blood sugars at all, and i'm very aware that I am not strict enough to do it by diet. </p><p></p><p>Trying to decide which is worse!</p></blockquote><p></p>
[QUOTE="LizLola, post: 2631027, member: 77409"] Hello, all! Yes, I believe they are still doing them. They are not a cure, and as I understood it at the time (this was about 8 years ago), some work better than others. Some people get good insulin amounts and become basal and bolus free for some years - as the transplant goes on, in later stages, they may need to supplement. five years was the given life at that time, although the longest surviving transplant was 16 years according to a paper I read - the date at that time was 2010. So things will have moved on, presumably. But eventually the islets degrade and cease to function. Then of course you would need more put in - and the problem with that is that you would get even more antibodies to another donor. The more antibodies you get, the more likelihood that any future donor organ will survive, and it will be come increasingly difficult to find a donor who will fit. So what if you need a donor kidney, because your kidneys fail? If you are younger, this is definitely a consideration. The other thing that put me off was the drugs. I was warned that the drugs are as bad as those given for chemotherapy in their toxicity to the body. I joined a few transplant Facebook groups and just observed all the problems they had. They are myriad. Strange infections you will never have heard of - requiring hospitalisation and v strong antibiotic drips. Ordinary infections you will have heard of requiring the same. Your skin becoming covered in warts - no way to get rid of them. Rampant yeast infections. Cancer - of all sorts, as your immune system which mops up mutant cells usually is depressed. Particularly skin cancers. You have to stay out of the sun. You will be very prone to Covid. Basically - yes, you swap one lot of problems for another lot of, well, really quite a lot worse problems. I decided that rather like false teeth not being a replacement for your own teeth but being a replacement for nothing at all, a transplant was only to be approached if there was no other way of sustaining life - ie kidney failure. I wondered, reading Antje77's post above, just what 'unrelated' issues the Dutch transplantee died of. It might be that islet cell transplants have dropped out of favour because they likely to have been offered to people like me - healthy otherwise, just no warning symptoms of hypos, and of course the brilliant new pumps such as the Tandem T Slim (I tried that, did not like it at all) and the 780 (brilliant pump, much better) may have filled the gap in keeping people safe from night-time hypos in particular. What I don't like is that even with the 780 unless I eat a very restricted diet I still go high, and at the minute I have a brain problem (pulsatile tinnitus, more common in type 1 and with people who have protein C, caused by the joining of veins to a artery in my head). This has caused a general shrinking of my brain - which could be a precursor to dementia. But it could also be caused by high blood sugars. So I am looking at ways to try and curb any high blood sugars at all, and i'm very aware that I am not strict enough to do it by diet. Trying to decide which is worse! [/QUOTE]
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