@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

Hi

I am five years post a very successful liver transplant. I took my awful Lactulose faithfully every day but still had one serious HE episode. It was unforgettable- three days in hospital and fed copious amounts of the stuff. It was dreadful but it worked. I was never given Rifaximin but I'm sure you will be fine if you take both meds faithfully and don't be tempted to miss a dose. I know it is disgusting but it is literally a life saver.

When i was admitted to A & E, the first doctor mis-diagnosed me but as soon as I saw my specialist he told my husband it was HE. He sniffed my face and said he could smell the ammonia! Embarassing, yes, but useful to know. I had no long lasting effects (as far as I know!).

I was in Las Vegas Hospitals for a month Last Year before they finally correctly diagnosed me with ammonia in the liver. I also was given Lactulose and xifaxan. I went to the Mayo in Phoenix and they looked at my past year of tests and determined I needed a Liver and Kidney transplant. For me it was a 9 month process of testing if I was healthy enough to qualify (I was 68). Last June again the ammonia caught up with me, and after calling the MAYO, they insisted I go to a local hospital and they would monitor me. Five days later I woke up and was told I was at the MAYO in Phoenix. After being stabilized, I had one additional test, which I fortunately passed and was placed on the transplant list that day and incredibly received the transplants the next day. Look at the success rate of each hospital and the five year survival rate. Do not skimp on this research. Be suspicious of low volume hospitals. The Transplant for me were not easy with major pain until we finally (2 weeks) discovered I cannot tolerate "OXY" drugs, however now, 5 months out (while I still have some problems) my overall health is better than it was 10 years ago. Get on the list ASAP, the sooner it happens the better, It will be based on your MELD score not first come first served. You will also need to be within a few hours of the transplant center and you will need to remain within a few minutes of the center for 6 weeks after discharge. Also price out the medications you need (some are quite expensive) and you will possibly need to hunt for help.
Good Luck, and I hope hearing from someone who has just been through it helps.