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Looking for pancreas transplant patient

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stuart Rodgers

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Relationship to Diabetes
Type 1
Hi Forum.
My name is Stuart and I've been a type 1 for over 25 years. over the last few years I have been getting a load of complications due both to the Diabetes and Sarcoidosis and the Tablets used to treat it.
I have retinopathy,neuropathy, charcot joint, chronic pancreatitis and had all the toes amputated from the left foot and one from the other. I've now been referred to the Transplant Team. at the moment I can't decide whether to go ahead with it or not as there are + & -
Has anyone been through the Transplant and is willing to chat to be about it .
Thank you
 
Sorry, I haven't been through a transplant, but you seem to be in such a frightening place I just felt I'd send you some good vibes and hope you find a suitable donor soon as well as someone to chat with.
 
Welcome to the forum. I know there are a couple members that have had a total/partial pancreatectomy that may be able to offer you some support or advice. Have you discussed that as an option too?
 
There arnt many ! What part of the world are you from ? Newcastle has done a few & the teams up hear are good. My mate is one of the oldest heart transplant patients & takes mountains of ant-rejection tablets. Things are getting better & good luck 🙂
 
BBarb said:
Sorry, I haven't been through a transplant, but you seem to be in such a frightening place I just felt I'd send you some good vibes and hope you find a suitable donor soon as well as someone to chat with.
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Thank you so much. am married and have a young son. it's so hard to know what is the best way
 
Am from. South West Wales so I would be at UHW Cardiff. I am Married and have a young Son so we have to think what is best for everyone
 
Rosiecarmel said:
Welcome to the forum. I know there are a couple members that have had a total/partial pancreatectomy that may be able to offer you some support or advice. Have you discussed that as an option too?
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They said they would "plum in" the doner pancreas and leave mine in
 
I've had a total pancreatectomy. I know it is not the same but if you have any questions I may be able to help with then please ask away.
 
stuart Rodgers said:
Am from. South West Wales so I would be at UHW Cardiff. I am Married and have a young Son so we have to think what is best for everyone
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I worked in Cardiff for a few months. Stayed at Cathedral rd & about 7pm walked to the town ctr past Cardiff Arms park. It was magical even at that time with no one there ! I am mad :D
 
I know 2 T1s who had joint pancreas and kidney transplants. Of course they don't come onto forums - they aren't diabetic! But both have said to begin with they had more trouble with the anti-rejection drugs and forcing themselves to drink as much plain water as they now had to, than they did with the diabetes. Having said that though - they were both a bit uneducated about their own diabetes in the first place despite one of em being a GP Surgery nurse. My surgery, I knew more than her about D from Day 1 - hence I'd just say Yeah and ignore most things she told me to do/not to do cos most of em amounted to bollards!

Are there any 'transplant' forums generally? Both of the two I know went to Oxford for theirs and I believe had a chance to meet some that had had it done and ask questions there. Where would you be going for the procedure? And - have you asked them if they have a Support Group?
 
I've been getting a strong feeling of deja vu with this thread. I thought this discussion was played out in October when you last kicked it off, so I don't really know what else there is to say. As they say in parliament, please refer to the answers previously given.

In summary, pancreas transplant is NEVER offered as a treatment for chronic pancreatitis, because the dodgy pancreas is left behind in the procedure. It is offered as a treatment for diabetes, but not usually in diabetes with CP. Even then you are likely to need some insulin afterwards, and also be on anti rejection therapy.

So any benefit is likely to be marginal. You will still have CP. You will still have all the diabetic complications. You are still likely to need some insulin. You will be on lifelong anti rejection therapy. And it might not work. The operation might kill you anyway, it is not without significant risk.

It's your decision. Nobody here can help you make that decision, no matter how often you ask the question. That's all I'm going to say.
 
trophywench said:
I know 2 T1s who had joint pancreas and kidney transplants. Of course they don't come onto forums - they aren't diabetic! But both have said to begin with they had more trouble with the anti-rejection drugs and forcing themselves to drink as much plain water as they now had to, than they did with the diabetes. Having said that though - they were both a bit uneducated about their own diabetes in the first place despite one of em being a GP Surgery nurse. My surgery, I knew more than her about D from Day 1 - hence I'd just say Yeah and ignore most things she told me to do/not to do cos most of em amounted to bollards!

Are there any 'transplant' forums generally? Both of the two I know went to Oxford for theirs and I believe had a chance to meet some that had had it done and ask questions there. Where would you be going for the procedure? And - have you asked them if they have a Support Group?
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Blimey Trophy - I wonder (bearing in mind our geographical closeness) if we both know the same two?!

Both the "girls" I know are doing extremely well, although one has had a further kidney transplant as the first (transplant) failed for an unrelated/seemingly random reason. She now has 4 kidneys and 2 pancreases. She might run out of space soon!
 
Hi sorry about your predicament. Not had transplant, but had deep Frey's for chronic pancreatitis. Hate to be a killjoy it didn' t work. I still suffer from chronic pancreatitis. Major surgery is a risk. Plus you have to be prepared if it fails.
 
Maybe Stuart is asking again because he remains in crisis about his mammoth decision and hoped for some further or new input.

I can't advise Stuart but I feel desperately for your predicament and wish you luck.
 
Hi MikeyB. thank you again for your advice..I did ask this question in October. am not asking for someone to make the decision for me just an insight. the Transplant hasn't been offered because of CP it has been offered because of may long term complications due to both diabetes and Sarcoidosis which are both autoimmune diseases and because of this my BM are very unstable going from very high to very low really quickly. I've had to use glucagon seven times this year with the lowest level being 1.6
 
Stuart I really feel for you. Sarcoidosis is an incredibly horrible illness which is often misunderstood. My ex suffered from it and it wrecked his life and our relationship. Combining frequent steroids with diabetes must be a nightmare. I really feel for you and hope that you are able to make a good decision about what to do.
 
HOBIE said:
I have been down to 0.8 & sorted myself out 😱. A couple of years ago 😉
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Sorry to hear this Hobie. I think that you were very lucky to sort it out yourself but I'm glad that you were able to.
 
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