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Liver transplant - Let's support each other

Transplants | Last Active: Jun 22 9:17am | Replies (1606)

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@rosemarya

@parrot53, I'm happy that you have discovered the vast amount of wisdom and experiences that are 'hidden' in some of the older posts. Sometimes members post one time, and sometimes they become engaged in a continuing conversation that is beneficial and supportive. I noticed that you intended for your question to go to particular member. Please allow me to insert the correct contact @name for @livertrex

I remember the fatigue and the insomnia as part of my pre transplant period, and I hope that you continue to feel fairly well. In my opinion that is an accurate description for the changes that, in my situation, came on gradually. Fortunately, my GI was on top of it, and guided along the way until I needed to be referred to the transplant center in my region.

If you are wanting to meet others who have experienced long waits and wondered about MELD score, I want to share this discussion. It is long and it does veer off topic, however it is filled with real experiences.
-It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/

Parrot -
Are you being monitored by the transplant center where you are listed? How does the possible cancer affect you transplant listing? Is any treatment or chemo required?

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Replies to "@parrot53, I'm happy that you have discovered the vast amount of wisdom and experiences that are..."

Hello Rosemary,
Thank you for your reply. I did read that thread. I knew it was iffy that @livertrex would still be active. Not sure about how to address posts. I guess this inquiry could go to this group.
I am being monitored by my team at Mayo Jacksonville. I am on the TP list but inactive for now. I go four times a year to make sure there is no deterioration or new cancer. The tumor was ablated and now I have waited the required six months to accrue additional MELD points as outlined by UNOS for liver cancer patients. Because my liver function is still relatively good, I remain inactive for now. I do have portal hypertension and did have esophageal varices. A few other things unrelated to liver also. But nothing serious enough to jeopardize my TP status. I have come to understand that this is a long journey for some. I am so thankful to have you all here for support.