End stage liver disease

@mandosssss @rosemarya
I too welcome you to Connect. As Rosemary commented, your brother is very fortunate to have you looking out for him.

I had HE episodes somewhat frequently until I went to a hepatologist and she prescribed xifaxan for me. When I started taking that I was able to drop lactulose for about 8 or 9 months and had no HE episodes. When they resumed I had to start taking lactulose with xifaxan, obviously my liver had deteriorated further.

Something I did not do myself but I think could be helpful is to track what your brother is eating, and when he has an HE episode see if there is a common food that could be leading to it. I think that perhaps beef was a problem for me. I was told it was OK to eat it in small quantities, which I did, but maybe I was just more sensitive to it than other people with cirrhosis.

My cirrhosis was from fatty liver, not alcohol, but once you have cirrhosis it doesn't matter what the cause was, it's all the same. I had a number of hospital stays, generally two or three days each time. I went to my local hospital which of course is not as knowledgeable about cirrhosis and HE so frankly the treatment there was not good, they just seemed to think I was a belligerent old lady. If you are close enough to the hospital where he will be getting a transplant I would advise you to have him brought there.

I really empathize with what you and your brother are going through. Having HE episodes was the worst part of cirrhosis for me and even now, almost 5 years after my transplant, thinking of those days brings tears to my eyes.

Please feel free to ask any questions you need to have answered, either here or by private message.
JK

@contentandwell my son is 40 years old. Was rushed to hospital in march of this year. His hemoglobin was 3. After numerous transfusions he was put in ICU. Hospital said he was bleeding internally. He was diagnosed with cirrhosis a year ago and was being treated at Mt Sinai in NY. He had TIPS surgery about 9 months ago and it was helpful because it had his ascites under control. He relapsed with alcohol right before his present hospitalization. The last 3 months have been horrible! He went from emergency room to ICU to step down. He is presently in a Specialty hospital with the hope of getting strong enough to receive transplant. He requires a paracentisis every few days (the TIPS is no longer working) and his hemoglobin sometimes goes below 7, requiring a transfusion. His legs, abdomen and groin are very swollen. Any advice or information would be greatly appreciated. Thank you