Can anyone help me please...........

[orangehole]

Hi

Ive never posted anything before. I'm sorry but i'm really confused, i'm 54 and female and have alcoholic cirrhosis, having lived with undiagnosed Hep A / B and C for 30 years. My liver has also decompensated but i don't even remember it as i was unconscious and touch and go for about a week.

The NHS is badly overstressed and i hate to waste resources on a problem caused my own truama's and problems, therefore i've to deal with them. They keep giving me wrong information and i don't want to pester.

I just have no idea what i should be doing, apart from not drinking. Is it life shortening ? what are ELTs LFTs and all the other words i have no idea what they mean. The first sentence is all i know. I would like to maybe know a bit more.

Can anyone help me, where do i go for advice, to chat, to know more. I just can't do anything as i've no idea where to start. i dont think i have it - i have it but just not sure at all what it means other then not drinking or taking drugs for the rest of my life ? Can it decompensate again or is it decompensated already - damage done ?

Sorry i haven't a clue.

Thankyou

[Hidden]

Hi and welcome to our forum,

Are you under the care of a specialist liver team and consultant? It is really important that they explain about the diagnosis and what it means for you.

Here is our publications page where you can look at patient guides on Cirrhosis of the liver, Hep A, B and C.

britishlivertrust.org.uk/in...

If you are in the UK you can also call our nurse led helpline and we can have a chat about any concerns on 0800 652 7330 Mon to Fri 10am to 3pm. However, we would suggest you try to speak with your own doctor first to get some clarification and specific guidance

Best wishes.

[MLB_77]

You have just as much right to medical care regardless of why you are in the situation you are in. You are still a person.

[thewayforward]

My husband had an alcoholic cirrhosis for many years and had a liver transplant 1,5 years ago.If you would like to ask me anything please message me.

[orangehole in reply to thewayforward]

Hi

Thanks so much for getting back to me. I know nothing, i'm just leaving it, all seems like too much hassle.

When i read this, it immediately struck me that you might be be the help i need.

if you wouldn't mind sharing with me, were you angry with him? He must have done you some wrongs, totally down to the drinking and you not hate him a bit for it or do you just love him ? I've had that prolapse thing and nearly died but i've never hurt anyone, except myself.

My husband is just so angry with me for doing this to to our family that he can't see past it. We are talking about divorce, on top of my business going under and teenagers and COVID, i just dont think i have the strength to keep on going. How did you channel those feelings? Were / are you a drinker, or is it just that you are kind and he is not? Can he get through these feelings, do people or do you just not understand the question like it never entered your head what he'd put you through?

If i am making any sense ?

Thank you

[thewayforward in reply to orangehole]

Hi there,no I was not angry with him,his drinking was an illness and when he got very sick with cirrhosis he nearly died,and he suffered a lot,both physically and mentally because he suffered from encephalopathy as well.Ofcourse it was unbearably hard for me,so hard that I don't know how we both survived,it was clearly a miracle.Till now I have panic attacks.I was not angry,most of the time I had not any time for feelings and the other times strongest feeling was an enormous fear and anxiety, that I have till now.I guess your husband instinctively feels it too,so maybe he just is not up to it,you have to sacrifice a lot to support your closest person through this extremely hard illness.But in any way you should not blame yourself.You are very seriously ill,and you need to be calm and strong to take care of yourself.Number one is not to drink,number two take your meds,number three watch your mental and physical condition carefully and get medical help,even go to A&E at the moment you feel you need it.As for your husband,I think he is just scared to take responsibility,and I understand.So it's you who should survive and be strong and continue living.Anything else you want to ask please feel free.x

[orangehole in reply to thewayforward]

Thanks somuch for getting back to me. Is it just deal with it, as that's what WE (women) do ??

You reckon my husband just hasnt got it in him to deal with it. Surely though he should just say - tell me how to help.

He says i could have all the support i could possibly want, i.e. roof, food, heat, phone. But he tends his plants more carefully, is this because they are easier to predict and to change. He also adores animals but doesnt ike hugs particularly but will sit cuddling a cat all night ???

I dont think you meant you wanted to be someone's councillor but at the moment who has some idea whats going on, even its from the other side.

I think i need to sort my head out and my marriage before i can focus with the effort that would be required at the mo, to get anything done.

Really, really appreciate your words, I know anything you say to me is not scientifically proven advice but it's your experience and maybe thats important. To me anyway. if in act on your advice & it doesn't work for me, i know this is just different people with different experiences.

Thank you.

It's also just nice to talk to someone, who is willing to take the time. Much appreciated.

Cheers

Lisa`

[thewayforward in reply to orangehole]

Dear Lisa,I really hope things will work out for you in your marriage ,and I wish you strength and to stay as well as possible.I can only share my experience, and ofcourse it would be wrong for me to give any advices. We are all different. Stay strong and take care.x

[Marydel63]

Hi glad you found this group. It doesn’t matter how you got your cirrhosis. You can beat yourself up and be angry with yourself but don’t. My cirrhosis is from my fatty liver. = that to eating too much and not excercising etc.

If you can, I find talking therapy once a week helps me because I don’t share everything with my husband and children .

My husband gets irritable and upset or doesn’t really hear me when I try to explain my results or fears. I think it is his way of coping.

Try to slowly read info from BLT and take it one day at a time . Hoping you get answers and please see a doc you are worth it!!

[orangehole in reply to Marydel63]

Thanks a lot, that's great. Appreciated and really needed at the moment, even just someone to bounce things off. How do you manage to stay positive. I find it really hard to believe my husband cares when he has no interest in helping me. Although to be fair, he gives me lifts to all the appointments etc and has been there on all the really bad days, i.e. me being unconscious in hospital, happened about 4 or 5 times in the last few months before the big one.

Some positive thoughts were great but please dont spare the negative thoughts.

Do you ever blame yourself, like i do. It's my fault, I screwed it all up. I drove him away etc etc

Thanks & night.

Talking with someone real is really nice.

Cheers

Lisa