End Stage Liver Disease

My dad was diagnosed with esld and liver cancer about a month ago (he didn't get it properly checked out so now it's too late) and has been in hospital for about three weeks until last week when he was allowed home.  The specialists did all the tests and scans they could and even took a biopsy to see if the liver cancer was secondary - results not yet back.  The diagnosis was not good.  They gave him just a matter of weeks to live and we're dealing with this now.  He has carers who come three times a day and he's at home.  He's not in any pain but has a lot of fluid in him stomach, legs and feet, symptoms of the disease.  For the past week he's barely eaten, can't swallow very well and is asleep pretty much all the time.  Today he started mumbling and saying things that were random but clearly from the past.  I was told that this would happen but I hope he's not in pain.  I want him to be better but know it's impossible, there is no telling how long he will live, I'm upset for my mum who's now looking after him aswell.  Is anyone going through the same - what was the end like, I need to prepare my mum. 

Also, thanks to everyone on the forum, it certainly helps me to read the threads to see I'm not alone.

Jolie as Connie said hard to tell... Mike died April 22nd... and had been given six months.. he lived 3 months and 22 days... he died from other complications.. but the liver cancer was what gave him the six month time... he had ESLD and liver cancer... he was confused... and had a lot of fluid also..it was quick from the time took him in.. 24 hours.. pneumonia and blood pressure crashing... can't tell... take care of yourself Jolie... prayers ur way... Sandi

Jolie, do they have him on diuretics such as Lasix, and Lactulose for increased ammonia levels which affect mental statsus? 

Hugs,

Connie

I'm kind of in Jolie's shoes right now, but with an aunt. We've all known she's an alcoholic and despite many times telling us that she's stopped, she never did. Now she is in stage 1, borderline stage 2 of the encephalopathy. On top of that, she also has hemochromatosis (genetic condition where the organs store iron to unsafe levels) and Lyme Disease. Today was the day her doctor said he holds no hope for her. I'm still trying to figure out how to support my Mom who blames herself for not getting her sister to stop drinking. I know there was no way she could have, but because when her parents died they asked her to watch over her sister.

My issue is that the doctor really has written her off. My uncle's well into his 70s with his own health issues and can't care for her at home. So he keeps bringing her home per hospital instructions and then going right back because her ammonia levels spike and she becomes combative, delusional (to the point she's called 911 and claimed she's been raped) and refuses to take her meds. Because she's combative, no facility will take her. Home health nurses can't do the IVs which seem to do the best job at keeping her calm and non-delusional. It's frustrating at best so I'd love to hear how others have gotten past the No-Hospice wants to deal with those kind of problems...

Hello Jolie and TraceVT and welcome to HealingWell. I am so sorry that you and your families have to deal with this horrible disease.

I agree with Connie .......call Hospice.....ask their doctors for the referral. They are a wonderful organization which I have unfortunately had the opportunity to use twice.
They also provide hospital beds if needed, oxygen, meds and anything that is needed to keep the patient comfortable.

And yes, I also believe that the hearing is the last to go. Tell your loved ones how much you love them. Even if they go into a coma........keep talking to them.

Take care.....thoughts and prayers.........

Trace, I understand what you're going through. It is so hard to go through and my mum is so upset but she knows deep down that there was nothing we could have done. We told my dad so many times to stop drinking and he didn't.

Last night we had to call the nurses to adminsiter a further dose of diamorphine and he settled down after that - what a long night though. We have discussed the hospice with the nurses and agree that it is the right thing to do. With my dad though, he has now only been given 48 hours and is far too weak to be moved. The nurses have agreed that he should stay at home now and we're having an nurse stay over night to help him. They will bring all they need to make him comfortable.

It hurts to see him look so fragile and not be able to respond to us. He can't talk or move now and my mum finds it hard to see him as he looks so old (he's only 63).

However, we must stay strong as we have a lot to deal with over the next few days. Keep strong too.

Jolie.

Thanks to everyone else for their input. I don't honestly know how much I'll be around as I have my own work and life to attend to on top of this.

Suggestions of hospice are appreciated, but so far not going well. She's on IV meds that most nurses we've spoken to state they cannot give, only a doctor can. The doctors have stated they can't come up with a place that will take my aunt because of her combative nature. I'm looking into making the trip this weekend, so we'll see what happens if I can. I'd rather start hearing first hand from the doctor to see exactly what he's saying.

I agree, it might be best to leave them be where at least they won't be further traumatised by any further movement.

We did not move my dad to the hospice and he passed away today at home.  I believe he did this peacefully and to make us suffer less.

Bless him and I hold hope that your relatives will be comfortable too.

Many thanks for the support.

Jolie

prayers continue to be with you Jolie... sorry for your loss... it's not easy...

i'm a full fledged devoted drinker of beer that resulted to my diagnosis of end stage liver disease. I've always  knew that by drinking will kill me as with the reality of four family members have died of cirrohsis. Now, I'm one of them. Not dead, yet. Just want to know that I've done some things to help myself, at first. Now. I've picked up once again and have accepted the demise of my selfish choices. I'm not wanting any type of solutions or help for my disease. I would simply like to know, only because I never asked about my family members what to expect when my liver decides to shut down on me. Will it hurt? Will it be a long process? Questions like that. I've accepted what the doctors have told me, however, I just would like to know a run-down of how and what to expect when I've reached that point when "too much" was taken. Thank you for responding to anyone who may...

Pinkiusfloydius, Don't give up. It may not be too late for you. It you stop drinking the damage to your liver could stop and you would have many years left. Liver disease is a very ugly thing. My husband has been dealing with it for around 5 years and it has been very hard on him and my whole family. Don't just accept and continue to drink. Fight! It is really unfair to your family if you don't try.

Well, it is a way to commit suicide, slowly.

PG, thanks for telling it like it is!

Hugs,

Connie