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Islet Transplant

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Jennywren

Jennywren

Well-Known Member
Relationship to Diabetes
Type 1
Years ago i did go and see professor Stephanie Amiel , at Kings College hospital when this was first talked about , during my consulation today it was bought up again , because of the hypo unawareness that i suffer with , At the moment i still need to carry on losing weight as above the guidelines but i was also told today that i would have to take anti rejection drugs and probably would still need to take a little insulin but would cure hypos , what do you guys think what would be the lesser of the two evils ?
 
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Hard to say Jenny. I don't have your problems with hypo unawareness so would personally prefer to bumble along until they succeed with that research into coating the cells so you don't need the anti-rejection drugs. They clearly think that you would benefit greatly though, given that it has been raised with you more than once.
 
I know a kidney transplant is different, but had my cousin not had a kidney transplant and taken lots of anti rejection drugs, she would not have been able to lead a normal life.

At the end of the day it is you who has to decide with the help of those closest to you. Personally I go for finding out as much as I can and making and informed hoice. Whatever you decide, I hope all goes well for you.
 
The last time I looked into it islet cell transplants were lower risk than full-pancreas, but did involve immunosuppressant drugs. I also got the impression that if things went well the patient might be expected to be able to produce their own insulin for anything up to a few years, but from what I can remember it was not much more permanent than that.

Will be interested to hear if you find out some more current info.
 
With a kidney transplant, the choice is between the advantage of no longer needing regular dialysis and dietary / fluid restrcition, and the downside of anti-rejection drugs.

With islet transplant, it's all about weighing up the advantages and disadvantages - the hope of regaining hypo awareness and needing less insulin (although probably not stopping injections, nor blood glucose tests completely) sounds worthwhile, as that's Jennywren's issue (perhaps one of more issues?)

Anti-rejection drug regimes are being modified constantly, often resulting in fewer medications or fewer times of day when you have to take them, perhaps easier in relation to before / after mealtimes, lesser side effects. Still, the transplant team will go through everything, so you can make a fully informed decision.
 
Curing hypos/regaining awareness would be a huge improvement in quality of life.
 
Hi Jenny, It is a hard choice but worth looking into. I went to a conference last week and the chair of DUK gave a talk about his diabetes. He was telling us that he had an islet transplant in the early days, he was insulin independant for a few years but is now back to taking insulin. He still says it is has been life changing because he now has his hypo awareness back, his sugar levels are more stable and he can live a normal life again. I can't remember the guy's name but I will look it up if I can find the programme for the day
 
I would be very interested in any posts that you can put on here as I was offered a total pancreas transplant a few years ago if I could loose weight, I couldn't :-( A few things put me off and one of them was the anti-rejection drugs, I didn't know if it would be out of the frying pan time as I heard that the drugs make you feel poorly. I was told though that the drugs are far better now than they have ever been but it is a long road to tread to decide whether you want to do this or not. I think that anything that makes you non-diabetic is worth a shot but then everything has to be weighed up in your own mind first. I am very excited for you if this works and brings back your hypo awareness as I can only imagine how it must be living with not knowing that your blood sugar is low. Gosh your fingers must be made of asbestos with all the extra finger pricking you must have to do lol I suppose what I am saying is go with the transplant. Good luck with the decision xx
 
I'd want to talk to people who have had it done - if poss for similar reasons to why you are being offerred it - and then make a decision.

Perhaps if Natalie can find the chaps name, you might be able to have a correspondence with him?
 
Natalie123 said:
Hi Jenny, It is a hard choice but worth looking into. I went to a conference last week and the chair of DUK gave a talk about his diabetes. He was telling us that he had an islet transplant in the early days, he was insulin independant for a few years but is now back to taking insulin. He still says it is has been life changing because he now has his hypo awareness back, his sugar levels are more stable and he can live a normal life again. I can't remember the guy's name but I will look it up if I can find the programme for the day
Click to expand...

That would be Richard Lane:

http://news.bbc.co.uk/1/hi/health/4330717.stm

🙂
 
Thats the guy Alan! Thanks 🙂
 
Thanks Natalie and Alan for link 😉
 
I think this will take some serious considerating , is an option tho 🙂
 
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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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