u/EmbarrassedSort1603

Mom (60) has been hospitalized the last 10 days for recurring HE episodes. She got transferred to her transplant hospital via Life Flight on Wednesday night (from another hospital she'd been at since Friday) and went from being a little sleepy/altered before the 2 hour journey to only responding to pain stimuli when she arrived. They gave her lactulose enemas all night via rectal tube to get her to come around (ammonia was over 200) and she finally was coherent and pretty oriented by the following afternoon. They took out the rectal tube yesterday and she'd been the best I've seen her this whole hospitalization.

They had to hold back the lactulose because she had gone so much in that early period and by yesterday afternoon, she was sleepy again. Today she was so altered -- repeating the same thing several times, delayed responses, tremors, muscle rigidity, far away stare, and then she stopped being able to chew or swallow well by the end of today. They're giving lactulose enemas tonight and I'm just really at the end of my rope. It's been a cycle of a bad episode, poops too much, but is finally clear headed. Then they scale back the lactulose slightly and we end up in another bad episode. They keep pushing back her discharge (she'll be going to a SNF to get rehab to prepare for the transplant and get round the clock care) but if they can't even balance things in the hospital, what hope do I have? Her meld is currently 24, but it's been as high as 29 during this hospitalization.

She's on 45ml of lactulose 4x a day that she's always diligent with it, but she still got HE. She's also on rifaximin morning and night.

Did anyone else deal with recurrent episodes like this? How long before you got a liver? Did it complicate your transplant at all?

My mom (60) was diagnosed with cirrhosis in 2021 and immediately quit drinking. She has managed it pretty well until the last year. She's had a tough time with HE episodes like the tremors, fogginess, irritation, inability to walk, etc.

My sister, her sisters, her husband and I have been caring for her, but at this point she needs round the clock care. She's in Missouri and my sister and I live in Oregon so we've taken shifts flying in to be with her. She got admitted for a bad HE episode on Friday morning and this is her third admission in 6 weeks. She shakes terribly, she's lost weight, sways heavily between constipation and pooping a million times, is very foggy like a dementia patient. They're draining her weekly and they can't give her diuretics anymore because of AKI. Her potassium was really high and her sodium was low. They're trending better, but it's just all terrifying. We also lost my dad to cirrhosis in 2008, but he never quit drinking so we never had any hopes of a transplant.

She's been listed for about a month for a transplant and just seeing how sick and weak she is, I'm terrified they'll take her off the list.

Basically I'll take all the anecdotes of how sick did everyone get pre-transplant? What was the transplant experience like? Should we opt for hospice instead and not put her through this? I'm just in a tough place seeing her so sick and weak.