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Liver transplant - Let's support each other
Transplants | Last Active: 2 days ago | Replies (1617)Comment receiving replies
@benlam11 Thank goodness you were transferred to a good transplant center. Being misdiagnosed is so difficult. My symptoms should have led to a diagnosis of cirrhosis so easily but they did not. Thank God the neurologist added it all up.
@beckyy39 MELD 25 really is not that high overall. You can of course get a type O liver also. I was told that was an advantage.
@rosemarya Ahh, distance from donor (she was in Cambridge, right next door to Boston where I was) and my time on the list both probably helped me.
JK
Replies to "@benlam11 Thank goodness you were transferred to a good transplant center. Being misdiagnosed is so difficult...."
May I ask what you were initially diagnosed with?
Karen
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After the misdiagnosis, I contacted the MAYO myself - as I lost trust locally. They are just the most caring and, knowledge people I've ever met. With all my records sent there - I was diagnosed in One Day. It did take 9 months to complete all the testing. I've been in a HE coma twice (initially the TV was talking to me, then I entered a FOG that I could not see trough, with things talking to me. Now my Ammonia Levels are Great. Before I was taking Xifaxan and Lactulose, Las Vegas Doctors were pushing me to go on dialysis (I kept procrastinating) and eventually after speaking with an amazing Dr. at the Mayo, he said to skip it - for the worst that would happen is that they would tap my neck. Get on the waiting list quickly and also look at the time to transplant at each center. There are some huge swings. Best Wishes. My Meld score at some point was in the upper 20's, and when they called, I was 5 minutes away.