End stage liver failure, now what?

Hi,

My dad, 59 has been diagnosed with end stage liver disease (brought on by alcohol abuse). The gastro said his liver was functioning at 10%. About a month ago he had an episode where he became very confused, no idea what he was doing or where he was, and he had gotten so weak he hadn't gotten out of his bed for two days and hadn't eaten anything (he lives on his own).

We had him admitted and they gave him more lactulose and he got "better" in that he was no longer confused, had more energy and was then discharged. Things looked good for him for a few weeks, his mood was much better, ascites was improving. But in the last few days he's gotten very weak again. I was there to visit him and he wasn't strong enough to even hold the phone up to his ear, nor could he hold a cup of tea for more than a few seconds. He couldn’t hold his head up to look at me while talking, and even when talking, he’s just mumbling his words, and finding it hard to breath. He’s not really confused, though he got the days mixed up – he just doesn’t seem to be all there (maybe due to the exhaustion)

I’m noticing his mood is worsening also, on the phone today he keeps telling me to stop worrying and that he’ll be fine and I need to get back to work and on with my life, and that I should leave him alone. And his jaundice looks as bad is it ever has (it comes up clearly through our brown skin). He also has the shakes, always trembling, and always cold.

So that’s most of the info I can think of. I’m after some information about how much longer he’s got. I’ve been reading about Hepatic encephalopathy, and my worry is that with the weakness, low level of consciousness, the shakes, and his other symptoms, he might slip into a coma in the next few days. Does anyone know about timing? Is it really days, or weeks or months? The gastro said he would “wax and wane” so I’m wondering if there’s a chance he’ll recover from this lowpoint for a month or so, or should we be getting ready to say goodbye?

Thanks for taking the time to read,

Jason.

[jason731]

I forgot to mention, he also usually sleeps at least 18 hours a day, but last night said he couldn't get to sleep until 5am

[betty1973510]

i will do lots of praying

[crybabybob]

I have had end stage liver failure before, so I will be speaking from living experience. I am not able to help you on your timing issue, but may be able to enlighten you on the confusion your father is having. I hope that what I say will help you understand what he is going through. It doesn't sound like confusion to me. From what you decribed, he is incoherent. He is lacking orderly continuity, arrangement, or relevance. He is inconsistent, lacking normal clarity or intelligibility in speech or thought.

This is due to the toxins in his body. The kidney and liver function is to remove toxins from our bodies. Most of the toxins come from what we put in our bodies. Once my liver completely shut down, I wasn't much good to anybody. My doctor told me that the toxins would gravitate to my brain and cause me to become confused. He gave me medication for. If the medication helped, I could not tell it.

It always troubled me when people would say I was confused. They thought I didn't know what was happening or what was going on. When I say I was incoherent, I mean I was aware of all thing going on around me. My problem was that I could not hold a though for long. If my wife ask me something, I would understand what she said, I would know what I was going to say, but when I opened my mouth, I had forgotten what she had said and what I was going to say. This never stopped. I didn't lay down all day, but I sit on the couch in front of the TV all day, I hardly moved a muscle for hours. It looked like I was watching TV. Even though I saw and heard everything, I didn't see or hear anything. I was 100% unfocused. I was aware that I was there and was aware that I was aware of nothing. I had stopped eating, loosing 50 lbs in 2 months. I had to go to the ER every week to have 5 liters of fluid removed from my stomach. The weight of the fluid in my stomach pressed on my lungs, making it hard to breath. It took a liver transplant to change things around.

I really do know what you are going through, and I know that your father is aware of all the care you give him. If your father is anything like me, he is seeing himself as a burden, and I mean a big burden. A person of zero value who is causing hardship on those he loves. Understand that this was my experience with end stage liver failure and that it may very from another person's experience, who has a different personality.

[slowcat]

Is he on a liver transplant list and if so where?   If he is why has he not recieved one yet?

[jason731]

thanks so much for the insight bob - you're the first person i've heard from who had the transplant and was able to describe what *he* must be thinking and feeling

i think my dad does think he's a burden to us. whenever he is at his best and stronger / less incoherent, he always wants to put a show on for us to let us know how well he is doing and that he doesn't need our help - its quite the farce, because between the family members, its easy to pick up on the inconsistencies in his stories

at anyrate, i think i'm coming to grips with this - my only want for him is to die happy and at peace - when that happens is less of a concern for me now

and he's not on a transplant list yet - he has to prove he's abstained from alcohol for 6months, which is still a good few months away, and even if he survives until that long, i'm unsure whether its in anyone's interests for him to get one, because i suspect (and i'm sure the doctors do as well) that within 6months of the transplant, he'll start drinking again