LIVER TRANSPLANT EXPERT FORUM
Wilson's disease

Wilson's disease

Hi,
My wife has had wilson's disease since, well, her whole life. she found out 17 years ago when she was 15. She did take her medication, then stopped taking it. I think she didn't believe she had it. She then went for a long stint of self medication with Korean natural-path techniques. Specifically, eating the shell of crabs.

She still went for check ups. And this year it was found that 1/3 of her liver was damaged, beyond repair.

The translation to English from Korean, my wife being the Korean, is a little hard for me to understand at times. So I would like to know more information if possible.

1 - if this is scar tissue (cirrhosis) will it stay like that forever. I have heard that the liver grows back. But also heard that scar tissue can not regenerate.

2 - sleep. I know that sleeping a lot is a side effect of the disorder and liver problems. But, should she be sleeping that much? Should she be trying to wake up on a normal schedule? Despite her fatigue? Can excessive sleep cause more damage? She sometimes sleeps 12 hours or more a day.

3-how serious is this? I know if it goes untreated it is. But with the scar tissue, and treatment, is there a likelihood that it will still get worse. For instance, with alcoholism there is repeated damage, causing more scar tissue. With wilson's there is repeated copper. I am sure the meds can get rid of most of it, but there may be instances that it does not. Is this an issue that I need to worry about?

4-is liver transplant a cure? I heard that it is the only cure for wilson's disease. Is this true?

Thanks in advace. I would place this in another area of the forum, however this looked like the only dr. response forum that deal with livers.

Thanks in advance.
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IF THE WILSON DISEASE IS ADEQUATELY CONTROLLED WITH MEDICAL THERAPY TRANSPLANTATION WILL NOT BE NECESSARY ALTHOUGH THE CIRRHOSIS MAY NEVER FULLY REGRESS.  I AM UNSURE OF WHY THE FATIGUE--IT COULD BE RELATYED TO ANMEIA THAT IS DUE TO THE MECICATIONS OR ANOTHER CAUSE.  WILSON DISEASE IS CURED AFTER TRANSPLANTATION EXCEPT IF THERE ARE WELL ESTABLISHED NEUROLOGICAL COMPLICATIONS PRESENT AND WILL BE IRREVERSIBLE. EXCESSIVE SLEEPING CANNOT CAUSE PROBLEMS.
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