Only God knows, I guess: I posted here... - British Liver Trust

British Liver Trust
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Only God knows, I guess

Sof336
Sof336

I posted here about a month ago, and got a lot of support. I’m posting again to see anything all of the real experts might have to say (lol.)

Dad came home just before Christmas. He was doing well enough. He didn’t need at home care, but he was much slower and weaker than ever before (he is 67, btw.) I thought we were in for another miraculous recovery, just like 2 years ago, when he had initially been hospitalized with decompensated cirrhosis and a MELD of 29.

Last Thursday night, he feinted and fell but managed to call me. I rushed to his house and called an ambulance. He had 3 bleeding varices and a host of other problems, which landed him in the ICU. Luckily, they were able to band the bleeds and stabilize him enough to get him out of ICU and into general GI unit. But this time things very different. First of all, he sleeps constantly; he is unable to keep himself awake. He can be mid sentence and drift off. He seems to have no concept of time or much memory of anything that has happened. He is frail and shaking uncontrollably. His Ascites has reaccumulated and because of kidney damage doctors don’t want to drain yet. Atleast he is still eating and drinking.

His new MELD is at 32. My understanding is that it’s a poor prognosis, but some people do recover. Pretty 50/50? But that his chances may be slimmer due to age, Ascites, and encephalopathy. They are talking about him coming home as though he is all better... but really they are just sending him home to wait until another fatal event happens... right?

I wish I could just get straight answers. Everyone seems happy that he’s alive for this minute, but what am I looking at for the next few months? Should we be getting his affairs in order? Any advice or experience is appreciated. I’m mentally and emotionally exhausted.

13 Replies
oldestnewest

Hey there,

Sorry to hear about your dad. I hope you are doing well otherwise, and may l give you some unusual advice?

Please consider getting some help for yourself. Unfortunately, a father's alcoholism can adversely affect a woman's future choices with men and relationships, not really knowing what normal even looks like, so you'll want to make sure that you have your own head on straight and get support from others who understand.

The others were very helpful in your last thread as far as your father's prognosis goes, it was up to him to make better choices, l hope he did stop drinking. If so, you can push for him to be reassessed at six months sober, if by God's grace he makes it til then. No one knows what will happen, best guess is all anyone can say. It sounds grim but rest assured, the doctors will do everything they can to help him. Remember, no one who gets a liver transplant doesn't really need one! You are in the right place, keep coming back to us. Best of luck friend.

Hi.

I'm sorry that you find yourself back in this position, only worse this time.

It's very difficult with liver disease to know how long a person has got to live.

My meld score was 54 ten weeks before I received a transplant. I wasn't hospitalised at any time .

We are all very different with the variations of our symptoms.

It does sound like your father is in a really bad way but people in that same position have made a remarkable come back in the past.

Your fathers specialists will be the one's to know best what his chances are.

Is he still drinking alcohol? If not then maybe there is a chance of a transplant?

I was 68 and 3/4 years when I had my transplant. So there is hope.

Let us know how your father goes on.

Hoping your fathers health will improve.

Thinking of you both.

Alf.

You were never in Hospital? Really - how did you manage that?

Crikey freddy - I know you’ve said it before but you were right up there at the very top end almost with score 😕.... I’m glad I was never ever told mine. I think it’s worse knowing than not knowing.......

The only time that I was in hospital was one night each time when I had the TACE procedures to reduce the size of the liver tumours.

I was supposed to be in for 2 nights but I got them to arrange for me to have my bloods done locally and then they chased up the results, because that's all that I would have been in for on day 1. Then I arrived early morning for the day of the procedure.

My second procedure I wasn't in even 24 hours because there was norovirus on the liver ward so they got me discharged fast because my immune system was compromised after the chemo procedure.

My 2 HE sessions were dealt with at home.

One of those times my GP wanted me to go into hospital but Anne refused to let them take me because I'd just had TACE and my immune system once again was compromised and the local hospital didn't have a liver ward and they had 2 wards closed with norovirus at that time.

So my 3 years of daily tablet chemo was at home and so was the following year up to transplant.

Freddy, Thank you for the explanation. Good going and that was a very good system you had going - let me guess who was to thank for most of that - umm Anne perchance 😀. Well not being rude but you wouldn’t have been up to much around all that times would you!

Yes, Anne was fantastic through it all. My home nurse and carer, my secretary, head chef and pot washer, gardener, maintenance woman, chauffeur, and I couldn't have had anyone better to fight my corner :-) :-)

Hidden
Hidden in reply to alfredthegreat

Good team work! Anne couldn't have done it without Alf!

alfredthegreat
alfredthegreat in reply to Hidden

:-) :-)

Trust9
Trust9Administrator

Good morning Sof336,

Sorry to hear about your Dad.

May I suggest that as he is still in hospital, you ask for a meeting with his medical team , voice your concerns and ask all these questions. They are best placed to advise appropriately on your Dads individual care/management plan/prognosis.

It may be worth having a chat with the nurse in charge about your worries from a social care perspective as they may be able to help put things in place for his return home.

Please remember to try and take care of yourself also.

Best wishes,

Trust9

Hidden
Hidden

Dear Sof

I hope that you choose to take Bootandall's advice given to you in heartfelt solidarity. I hope you find comfort in knowing that you are not alone. This is an agonising time for you and it must seem endless. It will end though. When it does it may comfort you some to know that you have done the best you could for your dad in his lifetime. No matter how it seems at times, he wouldn't want you to risk your own health or be distracted from what you must do for the future of you and your child. Just be with your dad when you can and try to leave worrying about him aside. With love and good wishes

Dear Sof,

Your heartfelt post really touched me and I totally understand the position you’re in.

I spent 4 years trying to help a friend with cirrhosis but had to back off somewhat for my own sanity as he continued drinking and had also moved away.

In his case, he was admitted with fatigue, encephalopathy , ascites, and vomiting blood. Sadly he passed away 3 months ago and the Dr told me it was Hepatorenal Syndrome. This is often triggered by a bacterial infection in the ascitic fluid. The Dr also told me that draining fluid can also trigger Hepatorenal Syndrome. I’d never heard of it but apparently it is common in end stage cirrhosis. My friend wasn’t old, I’m still in terrible shock.

I would definitely look to get your dad’s affairs in order too. My friend did nothing and left me with a huge mountain of work to sort out, still am in the process. From his text of “ I’m not getting better this time”, to him being dead 3 days later is awful.

I wish you all the best, you are a very caring daughter . Look after yourself too xx

Thanks to all who have answered. When visiting my dad yesterday, he was still pretty out of it and in his sleep started breathing very oddly. I called the doctor and they realized he had pneumonia and some fluid in his lungs. He was moved again to a high observation wing, and started a new cocktail of antibiotics. My understanding from medical literature is that pneumonia in a cirrhotic patient, particularly and older one with ascites, has a pretty high mortality rate. The doctors continue to tell me nothing in the way of “end of life,” but I’ve been reaching out to family to say that he MIGHT not come home this time. I’m starting to feel so angry at the whole process. He’s just suffering at this point, and if it’s futile, I think he would just want to go quickly.

Thank you for all your support at this time. I know I don’t have to tell you how hard it is. It’s amazing to me how many of you have actually been even sicker then my dad is and made it through. How many of you overcame your addictions to live, and to be with family. You are miracles, each and every one of you. My son and I can’t afford to believe in a miracle like that for my father, but maybe the same kind of blessing and perseverance will come to us in other ways.

I feel sure that you have done everything you can for your dad and he appreciates that. He is in the best place, but sometimes you have to push to get answers. All of the good people on the forum can offer advice, but for the facts in your dads case the consultant should be the person.

Thinking of you. Look after yourself. 🤗

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