@jeanne5009 Jeanne, from my experience I would have to say "maybe". It's so individual. I was on just xifaxan for almost a year and had no HE episodes at all. Then I suddenly had another one. We thought it was due to "the perfect storm" -- I had a difficult ablation and I had norovirus so was not holding anything down. The hepatologist thought at that point though I should resume taking lactulose along with the xifaxan, that my liver had deteriorated much further. So then I was on both and I did have some full-blown HE episodes. Obviously the hepatologist was correct.

When I had my transplant, about six months later, my liver was pretty much spent. If a liver had not come along at that point I may not have made it. So much depends on your liver's condition. I really do not fully understand how they develop a patient's MELD score but I do know that some very sick people have low scores and some people who seem less sick have high ones. Mine was 28 at transplant.

Also, you ask about the definition of HE. That too varies by the person. I was fine most of the time, completely cognizant and able to live my normal life. Then I would get hit with major confusion, be totally irrational, and sometimes even combative. Some people just have a fog all of the time. It really varies tremendously.

You sound like one of the very fortunate people who are able to have good existence along with having cirrhosis. My sister has a friend whose mother had cirrhosis for 10 years. She eventually died from an unrelated cause.

I had thought xifaxan had come down in cost when it was no longer patent protected. When I was taking it we paid about a $700 a month co-pay.
JK

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