Posted 3/16/2018 5:18 PM (GMT 0)
Long introductory post! My Boyfriend (very short term) came for a visit over the holidays but went into severe acute alcoholic hepatitis on January 2nd and so has become a permanent resident due to his care needs. I don't mind but I feel very worried and confused about what exactly is going on and what I should be doing for him. He was VERY sick. Bilirubin was 45. I was told he would likely die within 60 days, be on life support etc... but it has been 72 days and he is still here. He did not go into a coma or require life support. He had hepatic encephalopathy for 1 week. They released him after 14 days and essentially sent him home to die.
He is 43 years old and has been an alcoholic for about 20 years. He has 20 years in law enforcement behind him but the last 5 years have been a steady downward spiral. He had alcoholic hepatitis in 2015 but recovered pretty quickly. I am unsure about his numbers and stuff as he is pretty hazy about it. He lived with his dad and brother at the time, also alcoholics. His hips have been bugging him for almost a year and in November he was diagnosed with total hip collapse on both sides and needs bilateral hip replacements. He cannot have surgery now due to the liver issues.
I took him to a liver specialist on February 14th who said his opinion was Kev would likely recover to a nearly normal level of function. I asked if he was going to die...he said not likely but that anything was possible at this point. I left feeling much better. BUT he developed pneumonia a week later and ended up back in the hospital. Then he developed hepatic encephalitis again! He was released from the hospital Monday. Bilirubin had dropped to a 12. He has developed some acites in the last month and has been tapped twice. His legs keep swelling
So now I am getting to the point... He is different. His mentation fades in and out. Sometimes he is normal other times "goofy" He takes gaba pentin, xifaxin, Lactulose, and zinc. The lactulose doesn't seem to work as good. When the pain is really bad he takes a small does of oxy. He is on a fluid restriction of 2 liters. I also give him vitmain D, B12, Magnesium, and a multivitmain. I want to give him milk thistle but the GP says it won't due him any good. He is sleeping a lot, but I think it is a healing sleep. I am trying to feed him good. He needs my help to the bathroom and in and out of his chair and wheelchair.
I haven't seen the liver doc again, but his GP is still talking like he will need a transplant. The liver doc said it was too early to say but the GP acts like the recent pneumonia has changed that??? His liver numbers have trended downward the entire time he was sick with the exception of the ammonia. Hospital doc had no idea why the ammonia jumped. He is less yellow. He has a good appetite. I am just worried. I live with dread everyday. The GP has stopped all labs for a month as she says she thinks it is time to let his body just do its thing without chasing his lab numbers. She has the home health nurse taking vitals and checking on him once a week.
Any advice, experience etc... I just want him to get well so we can try being girlfriend and boyfriend... Plus it breaks my heart to see him this sick. He was a good cop and a good father until 5 years ago. Also, no alcohol since Jan 2, and he is attending weekly outpatient treatment.