Pancreas
Chronic Pancreas Rejection
March 20, 2022
in Pancreas
When I was sick for two months with diverticulitis, my CT showed possible chronic rejection of my transplanted pancreas. This has upset me because I’m so careful with my meds etc. My transplant doc has done immune studies and they are about the same as before. It’s scary cause I don’t want to be a diabetic again. Anybody ever have chronic rejection and can share what you may be going through. Thanks.
1 - 9 of 9 Replies
Transplant Patient
Anybody have any insights? @brandonm @brookegurrad @Shelbycreates @ChefAmanda?
I'm a liver transplant recipient (x2. I had immediate rejection and was re-transplanted 4 days following my first transplant), and while I had a bit of rejection last year due to EBV, it was mild.
I do know how big the fear is of not wanting to go back to how you were before. It's one of the biggest things for me, knowing that I could do everything "right" and I still can't control the outcome. For me, it did give me some freedom to not do everything right. Yes this is my transplant but it is also my life, and what's the point in being given this second chance at life if I'm not going to actually live it, or if my life becomes managing my transplant? I had to decide when I was experiencing rejection if I really trusted my body, trusted my medical team, trusted the process? I know it's maybe not the insight you were looking for, but I hope it helps you know you are seen and validated. Feel your feelings, whatever you feel is welcome here. We are with you every step of the way
I only had one issue of rejection. It was 7 years post transplant. It did take me over a month to fully get out of rejection but I was blessed it didn’t come back. So unfortunately I have no insight on chronic rejection but I do understand your fears and worry.
Transplant Patient
@Saveddonna55 I am in chronic liver rejection. Happy to chat more and answer any specific questions you may have.
Thanks everyone for replying to my concern about chronic rejection. Transplanted 2008, at 3 months rejection and again at about 2 years which both were treated successfully. I looked up chronic rejection of the pancreas and I understand it’s not treatable. Brookegurrad, did they tell you that with your chronic liver rejection? Are you on edge about this? I finally decided it’s still working…so I finally relaxed some.
Transplant Patient
@Saveddonna55 the type of rejection I've had in the past has been acute, focal rejection. Translation: treatable with high-dose steroids and IVIG.
My new diagnosis is chronic ductopenic rejection. Translation: the bile ducts on my biliary tree are dying off and don't regenerate, so when they are gone, I'll need a new liver.
Essentially, I am in a holding pattern with no deadline. We keep an eye on things, but for the most part I feel the same and live in the same way.
At first I had a "mortality check," and had to talk it through with my therapist and my husband. Right now I'm coping and it's not my primary focus.
Brookegurrad, thanks for explaining your diagnosis about the ductopenic rejection. Oh my goodness I am glad you have a wonderful husband and therapist. Are you on the list for a new liver now? Not sure if I have chronic rejection yet but it showed up once when I was sick, probably they will do a biopsy at some point. How long have you had your transplanted liver?
Transplant Patient
@Saveddonna55 my support system is fantastic!
June 24 will be 17 years with my liver. I can’t believe it! I just had my 37th birthday and every year is a bonus.
I’m not currently listed because I’m not severe enough (a great problem to have). I need naps and don’t go as fast as I’d like, but I’m still able to be mom to my 8 and 5 year old, work a bit, and enjoy life. ♥️
Brookegurrad, Thanks from r info about your liver. I’m so glad you are blessed with 17 years post transplant. Life sounds wonderful for you. You had your children after transplant…so happy for you. I had my pancreas transplant at age 53 and am blessed to have a wonderful husband snd great family support. Life s good for me too. Just need to rest more but it could be my age!!!
Transplant Patient
We adopted both our kiddos and we are so lucky! I think we could all use more rest. :)