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

Transplants | Last Active: Jul 10 10:14am | Replies (21)

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@katebw

@hope25 it sounds like you are doing all good things to stay in reasonable shape and strength with liver disease. You experience limitations but are compensating. I didn’t experience palpitations that I remember. I looked up SVT having not heard of that. I don’t have that. Prior to getting on the official transplant list I underwent a lot of testing including nuclear stress tests to ensure my cardiac system could handle everything. I imagine that when one gets to the point of discussing a liver transplant you are already sick and transplant docs need to make sure you’re sick enough to be offered a transplant (living or deceased donor) but well enough to manage the surgery and aftermath . They raked me over with a fine tooth comb to ensure that I had very good support in the aftermath which I did. My understanding is that most issues that could harm your ability to eventually be on a transplant list can be reconciled- infections, heart disease, blood pressure, anxiety, support systems, etc.

I cannot remember- do you know what has caused/is causing your liver disease? Do you have a sense of the pace of your disease?

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Replies to "@hope25 it sounds like you are doing all good things to stay in reasonable shape and..."

No, I don’t have a definite cause. My ceruloplasmin was low, but the hepatologist thought it was related to nutritional statu, not Wilson’s disease. The other labs were ok. The NASH fibrosure is on the high end of normal and is being continually monitored. He did not recommend a liver biopsy since invasive. I have felt the same since March. After eating more calories, started to feel sleepier compared to normal. This concerned me, but not the physician. I bought LOLA (helps with ammonia-athletes who protein load use this) and feel it made a difference. I have not been diagnosed with encephalopathy. It appeared that my arms and back were losing muscle. My weight is stable. I really have no other symptoms. Sometimes I feel the physician’s are minimizing this and waiting until the bottom falls out. That concerns me. They have the experience of seeing other patient’s so maybe I am overly concerned.