I've had T1 diabetes for 10 years and despite my best efforts never rely managed to control it well enough to allow me to live normally. I've tried many different insulin regimes and and been on a pump the last few years, yet still feeling ill from highs and low takes up a huge amount of my time. I'm looking into the possibility of a whole pancreas or islet cell transplant. Does anyone have any experience / knowledge that might be useful? Thanks.
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Transplant
- Thread starter Atanaa
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- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
I'm not sure what the qualification criteria are, as there aren't that many to go around, so you'd need to have a good long chat with your D clinic/consultant about suitability.
As I understand it (which is only very vaguely) whole pancreas transplants are much more difficult/risky so islet cell transplantation is the more common.
Some people seem to get a good few years (decade?) after the transplant with significantly reduced or no need for insulin injection, but others are not so lucky and are back on injections/pump sooner and/or are never 'independent' and still need to top up a bit.
Last time I looked around there were a few people blogging about their experiences following the op (mostly in the US), which would probably be a good thing to search the web - to get some more accurate info.
Good luck with your research!
As I understand it (which is only very vaguely) whole pancreas transplants are much more difficult/risky so islet cell transplantation is the more common.
Some people seem to get a good few years (decade?) after the transplant with significantly reduced or no need for insulin injection, but others are not so lucky and are back on injections/pump sooner and/or are never 'independent' and still need to top up a bit.
Last time I looked around there were a few people blogging about their experiences following the op (mostly in the US), which would probably be a good thing to search the web - to get some more accurate info.
Good luck with your research!
Copepod
Much missed Moderator
- Relationship to Diabetes
- Type 1
Welcome to the forum, Atanaa.
Sorry, no persoanl experience to share. I'm not sure that anyone on this forum has any experience of whole pancreas or islet cells transplants. However, I'm not sure that I'd call daily anti-rejection drugs a normal life.
Sorry, no persoanl experience to share. I'm not sure that anyone on this forum has any experience of whole pancreas or islet cells transplants. However, I'm not sure that I'd call daily anti-rejection drugs a normal life.
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
FWIW, the 'Diabetes Nurse' at my GP surgery - herself a T1 since childhood, had benign tumours on her kidneys (now to do with diabetes, but the effect was the same, it killed her kidneys) so she actually got a kidney AND pancreas transplant.
Younger daughter's best friend since age approx. 5 (they are both now 39) had renal failure, and also had the double transplant.
Both have them have said managing the anti-rejection drugs is far far more complicated to deal with than diabetes ever was.
If you really are that poorly controlled - have you considered getting a pump? They are not for the faint-hearted either as they require quite a lot of work from the patient - but boy oh boy when you see the rewards you can get with a pump, it's worth every extra blood test and piece of detective work (why/how did something happen?)/mental arithmetic (working out what you need to do to sort it out) !
Younger daughter's best friend since age approx. 5 (they are both now 39) had renal failure, and also had the double transplant.
Both have them have said managing the anti-rejection drugs is far far more complicated to deal with than diabetes ever was.
If you really are that poorly controlled - have you considered getting a pump? They are not for the faint-hearted either as they require quite a lot of work from the patient - but boy oh boy when you see the rewards you can get with a pump, it's worth every extra blood test and piece of detective work (why/how did something happen?)/mental arithmetic (working out what you need to do to sort it out) !
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