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Liver transplant - Let's support each other

Transplants | Last Active: 1 day ago | Replies (1617)

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@kltchrmn

I’m in a similar boat. My MELD just fell from 23 to 11. That seems to be my magic number. No matter how high it gets it eventually goes back to 11. I’ve been listed for almost 4 years and feel like crap. No energy, unable to concentrate or focus on new info. Living life in bed watching reruns. Boring life.

Kim

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Replies to "I’m in a similar boat. My MELD just fell from 23 to 11. That seems to..."

I empathize with both of you. I was down to weekly paracenteses and monthly esophageal varices bandings, but my kidneys improved so my MELD score dropped to 12. I did not expected to get a transplant, yet here I am, 9 months post. First and foremost I had people all over the country praying for me. There were also several things in my favor. I live 10 minutes from the Phoenix Mayo, and the average MELD score is significantly lower here. Proximity is also a definite plus since the shelf life is so short. Consider multiple listings if your local hospital averages a higher MELD. Also I agreed to accept a liver from a donor with hepatitis C. It really is curable now, vs my liver disease, which was terminal. My donor didn’t have hep C, but did have meningitis. I was on extra IV antibiotics, but other than that it was fine. I wonder if they didn’t call the people above me on the list because they figured if they wouldn’t accept a hep C donor they wouldn’t accept this one. (I didn’t ask - I just counted my blessings). If your muscle mass is low your GFR will be artificially high. Do whatever you can to increase it and/or ask them to estimate it by cystatin. I wish you the best. I know how hard this is.