Pancreas transplant

[misst1mammy]

Hello I'm 23 and had type 1 diabetes for 5 years and it duswnt seem to get any better anyone got any advice about pancreas transplant?

 

[TheBigNewt]

Don't know about UK but in US I don't think insurance will pay for a pancreas transplant by itself. You have to get a kidney transplant too, which means you have to take the antirejection drugs anyway so why not throw in another organ. I think if you just want a pancreas you pay out of pocket. Which might be pretty reasonable in say India or somewhere. Not here lol!

 

[pleinster]

Don't know about UK but in US I don't think insurance will pay for a pancreas transplant by itself. You have to get a kidney transplant too, which means you have to take the antirejection drugs anyway so why not throw in another organ. I think if you just want a pancreas you pay out of pocket. Which might be pretty reasonable in say India or somewhere. Not here lol!

Hi. Having had a kidney transplant (courtesy of my kind sister), I just want to point out that it's not as simple as "throw in another organ"...and I'm sure that applies to the UK, the US and Outerzyhebria too (unless that part of the universe had developed a technique to produce organ replacements that require no compatibility. People who are not fortunate enough to have live donors to bail them out can wait for a very long time indeed (on dialysis for four or five hours a day three times a week) before a compatible kidney is found..and a number die while they are waiting. It is not always the case that a deceased donor will have both organs available. Often, both will be done at the same time if possible...but not always.

As for the UK...private insurance is not required because we have a national health service and transplantation like any other required treatment is technically free. Funding is through government via taxes, national insurance payments etc. I have no idea how people who can't afford insurance are supposed to cope...well...I guess they die. If the present government here in the UK gets its way, we will be in same boat as you guys...where income will determine who lives and who dies.

Anyway, bottom line - if a Type 1 needs a transplant in the UK, he or she will get one if/when a donor is available and if that donor also has a kidney that can be appropriated...both MIGHT be transplanted at the same time. The chances of compatible organs form two separate donors at the same time are between very slim and no way Jose.

Hi, @misst1mammy - try this link http://www.nhs.uk/conditions/pancreastransplant/Pages/Introduction.aspx

 

[catapillar]

Hello I'm 23 and had type 1 diabetes for 5 years and it duswnt seem to get any better anyone got any advice about pancreas transplant?

Unless they think you are at risk of dying from your diabetes you won't be considered as clinically requiring a pancreas transplant. Are you at risk of dying from your diabetes?

If you are at risk of dying from your diabetes, despite optimal diabetic management (ie even though you have had all diabetic education, you use a basal bolus regime and a pump and sensor you still have multiple severe hypos putting you at high risk of dying from a hypo, or you have uncontrollably high blood sugar and are suffering with serious diabetic complications and kidney failure) then it may be considered that it is worth taking the risk of a pancreas transplant - for every 100 people who undergo a pancreas transplant 2 will die during the procedure, another 8 will suffer serious complications during the procedure, of the other 90 not all of them will get a pancreas that works, the ones that do will be left taking immuno suppressants that carry risks of skin cancer and kidney damage.

Yes diabetes is a pain in the neck and it isn't going to get any better, but how you manage it and hoe you think about it might. A transplant isn't a magical off switch, being a transplant recipient seems, to me anyway, to also be a fairly all consuming medical condition even when transplant is successful.

 

[pleinster]

Unless they think you are at risk of dying from your diabetes you won't be considered as clinically requiring a pancreas transplant. Are you at risk of dying from your diabetes?

If you are at risk of dying from your diabetes, despite optimal diabetic management (ie even though you have had all diabetic education, you use a basal bolus regime and a pump and sensor you still have multiple severe hypos putting you at high risk of dying from a hypo, or you have uncontrollably high blood sugar and are suffering with serious diabetic complications and kidney failure) then it may be considered that it is worth taking the risk of a pancreas transplant - for every 100 people who undergo a pancreas transplant 2 will die during the procedure, another 8 will suffer serious complications during the procedure, of the other 90 not all of them will get a pancreas that works, the ones that do will be left taking immuno suppressants that carry risks of skin cancer and kidney damage.

Yes diabetes is a pain in the neck and it isn't going to get any better, but how you manage it and hoe you think about it might. A transplant isn't a magical off switch, being a transplant recipient seems, to me anyway, to also be a fairly all consuming medical condition even when transplant is successful.

I would agree...my renal transplant was successful but I got diabetes from the steroids I had to take and will obviously have to deal with that and all the associated risks for the rest of my life. I will be on anti-rejection drugs for as long as the graft lasts (hopefully longer than average) and those drugs have risks and side effects. I have a virus in my new kidney from the anti-rejection drugs being so high and that will reduce the life of the graft even if I take meds to keep it it bay. I have issues with stomach muscles due to the operation, and I have to attend a clinic for blood tests very, very regularly. Despite this, I would do it all again to avoid dialysis..and who knows I may have to. BUT - I had a live donor. Most patients with renal failure will be on a list for years before being offered a kidney - but at least they won't die without one as they have dialysis as an option (not a good option!). I understand that a pancreas transplant with a kidney transplant is an exhausting operation with more possible complications. If I didn't have such limited options, I would never have put myself through it all. A bigger deal - the liver transplant patients I was in wards with - they die without it. If death or atrocious quality of life are the alternatives, a transplant is way out (but possibly not for life)...it was not a walk in the park and it still isn't.

 

[Fairygodmother]

Hi misst1mammy, what is it about living with T1 that seems to be impacting most? We've probably all had times when we just want to shout and rave at the duff genetic lottery that led to us feeling that we were at the mercy of a cynically sadistic universe. Mine were worst a good few years ago in those moments when the baby needed food, the toddler had climbed the bookshelves and was about to fall off and my blood sugars had taken a dive.
The day in day out testing and calculating can sometimes seem fruitless if there are other factors that affect life, mood and physical health.
So what is it for you?
There are lots of people on this site who are here to share with.
And with good medical support and treatment too T1 can become a condition, not a debilitating burden.
Have you got a good DSN or doctor you can tell how you feel and who can help you find ways to overcome whatever it is that's making things hard for you?
Good luck and hope it all gets more cheerful asap!

 

[paulliljeros]

Hi @misst1mammy I can tell you as someone on the SPK (Simultaneous Kidney Pancreas) waiting list, it is possible, but not ideal, and if I didn't have CKD (Chronic Kidney Disease), I would not be taking the route of transplant. In it's simplest form, the risks are just not worth it. The operation (estimated at 8hrs minimum) is complex and has many risks. Once transplanted, the anti rejection drugs have their own complications and you often end up taking more and more complex cocktails to counteract the side affects you will likely suffer. Diabetes is a pain, but it is well worth the effort of trying to get it under control.
What is your control like, and what regime (pump or MDI) are you on and do you carb count? Have you seen the books "Sugar Surfing" and "Think Like a Pancreas" and how often do you test. No judgements on your answers, it'll just help to guide you in a better direction than a pancreas transplant

 

[maria030660]

I know for your people it can be a pain to manage their diabetes. My daughter has also type one and she was the same age when i was diagnosed. As i see it more as a way of life (low carb) and have no hassle with my BG my daughter on the other hand finds it terrible to be a diabetic, tries to skip insulin doses to stay thin and tries to hang on to the life she lived before she become a type 1. A transplant will never sort out these issues as it is between her ears. And after receiving a transplant it doesnt mean that you are free of all problems. It also requires good management otherwise your body would reject it. Try to get some more help from your diabetes team and be honest with them so they can help you find the path in all this.