Is Xifaxan usually covered by insurance? (we have bc/bs federal.) And if not, what is the general cost per month. Seems I saw somewhere that it was very expensive.

Holy moly I just googled it. $1,500/ month! Wow! I did see that there are coupons and etc available.

@jodeej I guess I had you confused with someone else, for whom the closest transplant center was Oschner, 4 hours away. Which center is close to you?

I hope your husband's cognition continues to not be severe, and if it does get worse I hope it will only be in isolated episodes like mine was. The episodes were bad and I woke up every morning worrying that day would bring one, but thankfully most days did not. Knowing you are confused and not making any sense is really miserable. I was on lactulose first but when I went to the hepatologist she was able to prescribe the xifaxan and that made a huge difference until after almost a year I had to resume taking the lactulose along with the xifaxan.
JK

@bamagirlgina xifaxan cost about $2400 a month when I was taking it. To find out which drugstores close to you have the best prices there are a couple of free apps, GoodRx and LowestMed. I am on Medicare and generally paid between $700 and $800 a month but when I got beyond the "donut hole" it went down to under $100 a month. I understand that depending on your financial circumstances you can get it for a hugely reduced price from the drug company that makes it. I think it's made by Salix, you can google it and perhaps get it for a much better price. If you are dealing with HE and can afford it, it's definitely worth it.
JK

@jodeej that's sure a better price than what it was when I was taking it, from June of 2015 until September of 2016. I hated that I had a whole bottle not used but other than sending it to a person online I couldn't find anyway to get it to someone who could use it. Not sending it to someone I had met online was a difficult decision but from what I understand that can be risky.
JK

@contentandwell we are only a half hour from UNMC in Omaha, NE.
I'm hoping HE doesn't get worse also. Here's trying to work as long as possible so when he gets his transplant he can return to his job. If he uses more than his short term disability they don't have to hold it for him.

@jodeej, Our insurance covered travel and lodging for i year after transplant. We were able to do our 4 month followup and we scheduled our 1st annual visit within that time frame.
Rosemary

@jodeej, @bamagirlgina, @gaylea1, @contentandwell

I did not experience HE. I do not know what you mean by "brain fog".
I got very fatigued and lethargic. Also had ascites and nausea, jaundice. I describe what I experienced as "Living in a world where the entire atmosphere had turned heavy and thick. Breathing, movement, thinking became slow and tiring." Trust me when I say, Yes, it goes away after transplant when that new organ begins to clear those toxins from the body.

Take care of yourselves, listen to your doctors, and follow their advise. Call them when you have questions, and do not delay in seeking treatment when needed.
I was able to return to hiking 6 months after my transplant. Would have been 5 months, but had son's wedding to attend:-)

Hold on to Hope,
Rosemary

@rosemarya by brain fog I mean he is forgetful and has trouble with figuring things out that were normally easy for him. He is much slower cognitively. Thankfully he doesn't have the loss of balance or slurred speech. He does tire much more easily and gets cold faster.

@jodeej, I was told that everybody can experience different symptoms with livr disease. I think we have all demonstrated that here on this discussion group.
I think being tired and feeling cold are pretty common, though.
Rosemary