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DiscussionCirrhosis of the Liver: What to expect when waiting for a transplant?
Transplants | Last Active: Aug 16, 2023 | Replies (104)Comment receiving replies
Replies to "Good morning , Rosemary and thank you for reply and advice . My liver specialist is..."
@cs1964, Yes, you should keep fighting! By that, I mean, you should keep doing what your doctors are telling you to do. I know it is not easy, and some days all you need to do is focus on one day at a time.
At age 59, I had endstage liver failure due to Primary Sclerosing Cholangitis (PSC), and I was inactivated from the transplant list for 2 months when team thought I had bile duct cancer. My local liver transplant team was unsuccessful to get tissue samples that were necessary to rule out cancer. They arranged for me to be seen at Mayo Rochester to get a diagnosis about cancer. I missed the appointment because my kidneys failed (hepatorenal kidney failure) and I ended up in ICU and on emergency dialysis with a potential short term transfer to hospice care. Since I was at end stage liver failure, and the dialysis would only be temporary. I was not fully conscious or aware of most of this, but I do remember my husband at my bedside trying to keep me informed. After 5 days, my condition was stabilized enough for me to be flown to Mayo. I spent 2 weeks in hospital there and learned that I did not have bile duct cancer, and could be re-evaluated to be listed for a liver and a kidney transplant at Mayo. return to the active transplant list, this time at Mayo. There were times when the analog clock on the wall did not appear to move, there were days when I could only focus on getting through the next minute or hour. It was not easy, but... I never gave up praying, hoping, trying and even crying. My expert transplant teams - both liver and kidney - never gave up on me.
Here is an article from 2017:
Staying Positive While Waiting for a Transplant
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/