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Pancreas transplant or DiaPort???

P

Platinum

Well-Known Member
I have been referred to the Oxford Transplant Team and had a long chat with the surgeon and a professor of diabetes the other day. It seems that I could have a pancreas transplant providing I pass the cardiac tests etc. I have also met a DiaPort doctor and it looks like I may have this option as well.


There are pros and cons to both options; I am pretty much up to speed on the DiaPort but don't know much about a pancreas transplant - The leaflet they gave me to read looks terrifying! I also hate the idea that the anti-rejection drugs could give me cancer.


The transplant doctor said that if all goes to plan I would no longer be diabetic and my (Many) problems related to diabetes would stop getting worse and maybe even start to improve. He said that if I had a DiaPort I would still be diabetic and still have all the problems that go with it, even though my glycaemic control would be far better.


The DiaPort doctor basically said that given the option he would not touch a transplant with a barge pole if he could have a DiaPort instead.


(These are my words/interpretation of the doctors comments).


Has anyone out there been in a similar quandary or did I get lucky having the possibility of two options?


How long is a pancreas transplant likely to last? Could I opt for a DiaPort and if I don't get along with it change to a transplant? Is the opposite true?


I am currently pumping Apidra with an Accu-Chek Combi.


Any help or advice would be great.
 
I would not touch a transplant with a barge pole either because win or lose you are on anti rejection drugs for life which means immune system suppressed for life.

Put it this way if the DiaPort doesn't do the trick you can always have the transplant later.
 
iHs said:
Have you made contact with INPUT re the Diaport? Lesley
Click to expand...

I have - INPUT are excellent!


I was determined to go the DiaPort route but the transplant people seemed to think there’s was the better option. They have really put a spanner in my works as I was not expecting a choice.


I have agreed to have the preliminary work-up and to see them again early next year. There is no commitment on either side.


At the moment, I am tending to agree with Spiker – Consider the transplant route a ‘second’ choice after the DiaPort.
 
I'm a nurse and I would treat a transplant as the very last option because of the immunosuppresant drugs...its a lifetime
 
I started to go down the pancreas transplant route a few years back due to no hypo awareness, I found the prospect of major surgery and possible consequences of a lifetime of anti rejection drugs terrifying and decided not to continue with the necessary tests. At present I am using CGM and a pump but it is still something I may need to reconsider in the future. The options I was given was a pancreas transplant or an islet cell transplant.

It depends if having a DiaPort will address enough of the problems you are facing as it overcomes poor absorption and improves glycaemic control whereas a successful transplant can restore the ability to make/use insulin, prevent/delay complications as well as giving hypo awareness back. Obviously the serious downsides are major surgery and all the associated risks plus a life time of immuno suppressant drugs and possible failure of the transplant.

It is a difficult thing to consider as the two options are so different. Could you ask the Oxford team if it is possible to speak to someone who has been through a pancreas transplant?

I wish you well with which ever route you follow.
 
I would try this I have lots of complications with diabeties and going down hill fast...if I could help everyone out there by doing a transplant and being on tablets for the rest of my life then I would.
 
Thanks everyone for your thoughts - At the moment if I pass the tests, I plan to have the DiaPort as my first option.
 
Hello - I only learned about the Diaport today, and found this post by Googling. I am going through the transport route at the minute - still haven't decided yet. but it does seem mad as at the end of 10 years (how long a pancreas, transplanted, lasts, not as long as a kidney) your kidneys have been destroyed by the poisonous immuno-suppressant drugs. They are down to 10% function at the end of 0 years, and so you need a kidney transplant as well as another pancreas. But because of all the antibodies produced by the former transplant, another is much less likely to work. It sounds almost like a death sentence to me - only suggested i think because of my brittle diabetes and no warning symptoms means the likelihood of dying from a hypo.

However, with the new 640 pump and CGM, it cuts out your basal as you approach low, and it has stopped most hypos and certainly I have not had a bad one since using it.

I didn't know about the Diaport until someone on FB said they had just got the go-ahead to have one. It seems much the better option to me as at least the 'highs' can be brought down quickly and the lows stopped by the pump.

I am tempted to ask about it - the problem for me with waiting to see if this works and then having a transplant is that over 60s don't get elective transplants. So, at 58, this is my last chance to choose one or not.

I'd be interested to know what your choice was, platinum.
 
I now have a DiaPort and it has changed my life – My glycaemic control is massively better now. Towards the end, I was getting through around 6000 calories a week eating between meals to stop hypos – I once had a hypo that persisted for nearly eight hours over night and needed 360g CHO to keep it at bay – This is despite switching off my pump for the duration!

There is a closed-group Facebook page for DiaPort users – This should answer most if not all of your questions.
 
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