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ran73 (@ran73)

The decsion to be on a liver transplant list or not.

Transplants | Last Active: Nov 13, 2023 | Replies (19)

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@katebw

@ran73 I think I understand your wonderings- given the age and health of you and husband, what choices give you the best quality of life? I had a liver transplant 2 years ago, age 54. I had a form of autoimmune liver disease that seemed suddenly to be affecting me horribly so there was no question that I needed a transplant. I had stage 4 cirrhosis and my MELD was a 32. I know that people with far lower MELD score can feel terrible but sounds like you don’t.

One thing I notice about my stage 4 cirrhosis self was that in retrospect I was far more jaundiced and waterlogged than I realized, and also my brain was much more foggy when I was sick than I admitted to myself. And my hands were shaky at baseline which bothered me but again, I really minimized some of my worse symptoms.

That’s something to ask yourself- I have noticed increasingly that we live in a society that likes us to be strong fighters for our health. When I think back, I sometimes bought into that notion, getting fawned over by others for being “strong”, “inspiring”.

The fact that you’ve been sober for over 2 years, you’ve treated your Hep c, are eating well and exercising- all of this will serve you well regardless of your transplant status. I honor you for confiding in your PCP which is so hard to do. I hope you’ll share more and tell us how you fare in your journey for health. Kate

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Replies to "@ran73 I think I understand your wonderings- given the age and health of you and husband,..."

How sick were you when you qualified for a transplant? Were you still able to work? My MELD is 7 and normal bloodwork. I am concerned about “too sick for life but not sick enough for a transplant.” Did you pursue living donor at any point? In your research, what were the top liver hospitals?
Kind regards