Pancreas
Anyone else have a Pancreas-Only transplant?
January 27, 2021
in Pancreas
I’ve only talked to two people that had a pancreas-only transplant. No other organs were transplanted.
I needed one because if hypoglycemia unawareness and brittle diabetes after all other treatments were exhausted.
What’s your story?
TransplantLyfe Favorite
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Hi,
Although I had a kidney followed by a pancreas, I would do pancreas only in a heartbeat now even if my kidneys were great. I was brittle as well, and hypo unaware - I would be close to passing out often, and did so a few times in fact. I worried about driving, going to sleep and of course about complications...
1 - 15 of 15 Other Answers
Brittle Diabetes is not something to mess around with. So glad to hear you were able to have a pancreas as well!
How long to find a viable pancreas? Where did you have it done?
Hey, Baxter. I was on the waitlist about two months and had the transplant done at Mayo Clinic in Arizona
Transplant Patient
I didn’t actually know pancreas only transplants were a thing. You all are teaching me something new every day!
Transplant Patient
Just jumping into this discussion to learn more! I am starting to have blood sugar issues 16 years post-liver transplant, and I'd love to know what your initial stages of illness looked like.
@brookegurrad Hello! I needed a pancreas-only transplant after being a well-controlled type 1 diabetic for 28 years. My body began fighting the insulin with antibodies and not allowing it to work correctly causing severe hypoglycemic episodes. I couldn’t get out of bed anymore and after two years of doctoring then I found an endocrinologist that had seen what I was going through and said I’d absolutely pass away within a year or two if I didn’t get a pancreas-only transplant. I was having 5-10 hypoglycemia episodes where I’d pass out or be stuck in a zombie state daily—it was bad.
The biggest hurtle ended up being that it is a surgery not written into the Affordable Care Act here in the US, so I had to fundraise and figure out a way to pay for the surgery while knowing the next hypoglycemia episode likely could cause my total demise. I somehow survived long enough to get the funds, have the transplant, and get a part of life back. So thankful
Transplant Patient
@brandonm you’re a rockstar! Thanks for sharing this with me. I didn’t know pancreas wasn’t covered by the ACA. How on earth is stuff like this still happening?
@brookegurrad It’s a strange thing because a few insurances do cover it and the ACA covers Pancreas-only in tandem with another organ or after an organ is transplanted. It is an unfortunate circumstance to be in. I sued the State and Insurance Company and fought hard to have it covered because it was medically necessary, but the ACA language was used to prevent it from being covered and it was dismissed. I try to make my story known to everyone to change the language in the ACA, so no one else is out into the same position
Hi Brandon
i just had my Panc only 10/19/21. It took me 2 years to get on the list and 2+ to find the right one. I was offered 13. The last was the lucky one. My kidneys are good thank goodness. I can’t believe that it only took you 2 months! That’s amazing. Mine was done at Methodist at TMC. I almost decided on that last call not to go in and get off the list. The disappointment, stress, forever waiting just didn’t work for me. Even my doctor and my Coordinator thought it wasn’t going to happen for me. I was diagnosed with “ juvenile diabetes in 1977. LOL I’m showing my age. Nice to meet you this is my first day here. Robin
@SecondChance Wow, what a journey. Congratulations on your transplant. Nice to meet you.
I’m glad you all got pancreas transplants. Brookeguarrd when you do not have control of your diabetes then it will be time. It sounds as if you are just noticing blood sugar elevations. Docs do so much for diabetes now such as continuous glucose monitoring, insulin via pump etc. Don’t know where you are at. Your doc or probably an endocrinologist could tell you. I advocated for myself to get my pancreas transplant cause I just couldn’t handle the hypoglycemic episodes…I was unaware of them and got in an accident once and that was too much. Luckily no one was injured and I looked like a drunk driver, I couldn’t even remember my husband’s name. My insurance covered pancreas only. What is ACA in relationship to insurance?
Transplant Patient
@brookegurrad - Curious, how's your kidney function at present (post liver Tx)? You're a type 2 diabetic, right? Best of luck to you!
Just joined Trans Plant Lyfe. I am on the UNOS waiting list. Listed since June 20th, 2021. I'm dealing with the hypoglycemic episodes now. I will have my transplant done at Methodist University Hospital, in Memphis, TN
Any advise would be helpful.
Linda
IDB516 Welcome to the group. Linda, you will be happy once you get your pancreas transplant. Hopefully it won’t be much longer before you get another call. Hypoglycemia reactions are very scary especially when unaware of them. I had my transplant at University of Minnesota Fairview in Minneapolis in 2008 and it went real well. I couldn’t believe how weak I was afterwards but it was all part of the healing process. I hope you get your call soon! It’s the best thing I did besides marrying my husband.