Pancreas Transplant giving trouble


#1

I had diabetes for 38 yrs and had hypoglycemic unawareness which lead up yo blood sugars falling under 20 and unable to help myself. I was on the list for a pancreas transplant only because my kidneys were good. I waited 2 yrs and in November 2014 I received a pancreas. But have had problems ever since. Now I’m faced with making a big very hard decision , should I let the organ fail and go back to being diabetic and using an service dog and updated Medtronics insulin pump. I have only been well and no bad news for abt 9 mo out of the 4 yrs. suggestions or opinions anything would help me


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#2

Hi Kaytee, I have moved your post to topic in the main forum so that it will be viewed by a larger audience.


#3

Thank you Gary


#4

What a huge decision indeed. I don’t have direct experience with organ transplant so I can’t really speak to that. But I can say that if this forum teaches anything, it is that you can live well without a pancreas, whether or not you choose that. Hopefully this community can help with the specifics of what you need to know right now.


#5

Prior to your transplant, did you have CGMS, yet still had severe hypos? Are you considering medtronic latest pump with auto mode and CGMS? (Have you considered others?)

Many changes since your transplant that may help prevent your severe lows, and improve your quality of life.

@Terry4 has a service dog and may comment on that. But with CGMS, that may not be needed.

9 months out of 4 years seems like a lot of struggle. But switching to new pump, etc can be scary due to not knowing how it may improve your QOL.

What does your “gut” (pancreas) feeling say (pun intended)?


#6

As @MM1 mentioned, I use a service dog to alert for hypos. While I love having a dog in my life, I think using multiple redundant systems works best. My dog is not always right about my blood sugar status, but that’s true for my CGM as well.

I can’t help you with the decision to let your transplant fail but living with a situation that only works for 9 months out of 48 makes it hard to want to keep it. Is there a peer-support organ transplant online community? I think pancreas-only transplants are rare but there are many who receive a kidney and a pancreas. I would like to know their collective wisdom in addition to any medical info my doctor could provide. Tough choice.

If I were faced with your insulin pump decision, assuming you choose to let your transplanted pancreas fail, I would give a serious look at the Tandem pump that uses the Basal IQ algorithm. That means it shuts off all insulin delivery in advance of a predicted low. Tandem uses the Dexcom G6 CGM. I’ve been happily using Dexcom CGMs since 2009.

I know that there are many Medtronic 670G happy users but I’ve read too many accounts of not being able to make the system work from some users to feel comfortable making a four-year commitment to that pump system. If there were a money-back way to try the 670G, then I’d say go ahead, if that’s your preference. I have read consistent good things, however, about the new Guardian 3 sensor that the 670G uses.

The Tandem Basal IQ predicted low glucose suspend system has only been out for a few months but I’ve yet to read about any serious complaints.

Good luck with your choice. We’re here for you no matter which you choose.


#7

Unfortunately neither pancreas transplants nor islet-only grafts (the Edmonton Protocol) have ever worked very well. Generally, organ transplants are not as good a treatment as the public thinks they are, since even one from a closely-matched HLA group donor will only last about 15 years or so before failing. Not only does rejection by the immune system account for some of the organ transplant failures, but also the very drugs patients take to suppress the risk of rejection damage the kidneys and greatly increase the cancer risk, which rises to 30% after 10 years with a transplanted organ.

Different organs have different rates of success when transplanted, and unfortunately the pancreas is not one of the more successful ones. There is also a larger disparity between the number of patients needing a pancreatic graft and the number of new organs becoming available than there is for other organs, so this makes the procedure at best only a very small part of the solution for diabetes. In all of Canada, for example, they have been doing only about 34 pancreas transplants per year, and they are usually reserved for patients who already need to endure the burden of immunosuppression because they have kidney failure and a renal transplant. Whether a patient with just diabetes gains or loses from substituting immunosuppression for diabetes is a controversial question, but I would prefer to stick with diabetes to avoid the risk of cancer and renal failure.


#8

Thanks for the input I really appreciate it. I did use the CGM system with Medtronics pump and the results weren’t that great.
I was to the point that I had multiple low blood sugar and I worked close with an endocrinologist and she worked with Medtronics also. I feel I really didn’t have a chose.
I met with transplant Dr yesterday and the grade 3 kidney disease is most likely from IS drugs but he felt I most likely would not need a kidney transplant but of coarse he wouldn’t know for sure.
Also Found out that the pancreas is much harder to take out due to all of the scar tissue and can be dangerous. He said I only would have 1 % chance of getting PTLD which is reassuring, compared to a 3% mortality rate with diabetes. I have to meet with 2 other docs next week, so we wills see


#9

Thank you for your input on the service dog and pumps. It really is a trading decision for either transplant vs diabetes and neither are perfect. I will meet with 2 more Drs next week and make a decision than.


#10

I’m meeting with 2 more Drs next week than I will have to make a decision. I met with transplant Dr yesterday and found out a lot abt transplant vs diabetes and the pancreas would need to be removed and the surgery is harder than putting it in due to all the scar tissue and dangerous. Thank you for your input


#11

Thank you for your input I appreciate it. I met with the transplant Doc yesterday and found out that the pancreas is much harder and dangerous to remove due to all the scar tissue. The U of M Minnesota does a lot of transplants but yes the pancreas is less done.i found out a lot yesterday so I meet with 2 of my docs next week and have to make a decision then


#12

I initially used Medtronic CGMS, but switched to Dexcom which I found much more accurate.
Medtronics latest CGMS is the guardian3, which some report to be very accurate.
I use the older dexcom G4, with good results, and others report the newer G6 to be even better.