Farewell hepatitis, hello ESLD

Those who read my earlier blogs about  hepatitis C may remember that after some struggles I enrolled in a clinical trial which successfully wiped out the virus.  My trial involved an experimental combination of drugs formulated by Bristol Myers,  and I spent a month in a motel in Virginia taking my pills and checking in with the doctors daily for blood draws.  I was happy to do it.   Now, four years later, the marketplace is teeming with competing hep C antivirals, but back then before any FDA approvals, a trial was the only way to access one of the new drugs.  I was lucky to get into the trial, not being an ideal candidate because I was older, cirrhotic, and a cancer survivor.

I completed the trial and then travelled back and forth regularly to Virginia for the next year for follow up visits.  I was indeed cured, not cured precisely because that term is not  used, so rather I had a sustained viral response (SRV).  In other words, no detectable virus remained in my bloodstream.

But I still had a liver that looked a lot like the one on the right.  Not so pretty.  Lumpy, scarred, bloated.  It worked though.  Apparently, the liver is an extraordinary organ which has so much built in redundancy that even 45 years of battling hep C doesn’t necessarily put it out of commission.  Good liver!  Brave liver!  Compensated liver! End stage liver disease liver!

There are consequences of cirrhosis, however.  I have portal hypertension, which means that the blood flow through my liver is at a higher than normal pressure because it has to make its way through all the crunchy segments.  My liver is enlarged, because it is trying to work harder.  It needs to be treated with care – no alcohol, no ibuprofen or aspirin, no salt.  And because a cirrhotic liver is prone to developing cancer, it has to be checked frequently to catch any tumors early enough to eliminate.

If a cirrhotic liver stops working, doctors call it decompensated.  A whole litany of awful things happens to a person with a decompensated liver.  Ascites, hepatic encephalopathy, jaundice, and much more.  There are treatments but the only remedy for liver failure is a new liver, i.e., a transplant.

I am such a crank.   After I settled down with the reality of being free of hepatitis C, and came to grips with the longterm reality of having compensated ESLD, I wanted to plan for a worst case scenario.  I wanted to position myself and my medical care so that if my liver failed, i would be able to get a transplant.  The thing about liver transplants is that there are not enough livers to go around.

So here’s the crank part.  I researched liver transplant centers.  Who are they, how many transplants do they perform, what’s the average wait time, what are the standards for acceptance.  I learned that many transplant centers in the United States have cut-off ages for recipients of cadaver livers.  The commonest age limit is 70 although some hospitals stretch it to 75.  Being 73, I have a stake in the issue because  ineligibility for a transplant is a death sentence, and its not a pleasant way to go.




About Karen To and Fro

Everything you didn't want to know about me!
This entry was posted in ESLD-End stage liver disease, hepatitis c, Memoir and tagged , , , . Bookmark the permalink.

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