I’m confused

[Heartbr0ken]

Yes it’s me again and I am sorry for keep posting on here but I’m unsure what to think.

I went to see my partners parents today just so we can support each other. We had a cry and talked about my partner and how he is struggling with being in hospital and how low he is feeling today.

My in laws have said that I got the wrong end of the stick about the prognosis. I thought the doctor had said that my partner had 1-3 years life expectancy due to his cirrhosis and the child Pugh Score of C. My in laws said that my partner’s life expectancy would be that if he didn’t stop drinking immediately and he could live a normal life with medication. My mother in law said that if she had heard that his life expectancy would be what I thought she would be in absolute pieces. I have felt happier when they told me this but apprehensive. I’m too afraid to ask the doctor again incase it is what I thought. I couldn’t go through telling my in laws any further bad news. 😢

[AyrshireK]

As I explained in a reply to one of your earlier posts, Child Pugh C is at the more severe end of the spectrum and based on the calculation it does represent the 1-3 years you'd heard about HOWEVER this is reversible to some degree and will require your partner to be completely abstinent. It will never go away but it is possible to go down the scale of severity of damage. As I said in an earlier post my hubby was in hospital 8 years ago with stage 4 decompensated cirrhosis with bleeding from varices, over time he has stabilized - he isn't well by any manner of means but he is now back at stage 1 cirrhosis (compensated and stable).

Countless folks have told you not to focus on the 'prognosis', 'life span' thing. It's a mathematical equation to guide doctors. The key is to live every day, none of us are guaranteed a tomorrow. The healthier your partner can keep himself the better chance his liver has.

Katie

[Heartbr0ken in reply to AyrshireK]

Thanks Katie,

I have been struggling but felt like a big weight when my in-laws told me that. I’m going to put the scoring at the back of my mind now and concentrate on getting my partner fit and well. Apologies for keep asking the same questions. My partner was never ill before this. Rarely had a cough or cold.

[AyrshireK in reply to Heartbr0ken]

I know at the start we all think worse case scenario but you just have to try and get on with life, your partner has a big lifestyle change to make and that will be his only chance.

My hubby can't do anything to stop his liver getting worse as the damage was already done before we knew there was an issue and they can't treat it only deal with the side effects of cirrhosis as they arise.

Hubbies consultant has consistently told us he has liver patients on his books with a cirrhosis diagnosis for over 20 years.

It's something you can live with. We've never been told any scores at any point and we only knew it was stage 4 decompensated cirrhosis because of the symptoms present, no idea as to Child Pugh score, UKELD score (never even got told that when hubby was listed for transplant and that's another positive story - needy enough to be listed for t/p in 2014 and well enough to be delisted 10 months later so it isn't all doom and gloom).

Ok your partner is very poorly, but he seems to be making positive gains each day, minus the booze and in coming weeks and months you will hopefully see greater positive advances. It is possible his liver is 'too far gone' and in that scenario with a proven period of abstinence and keeping himself as fit as possible he should be a potential candidate for transplant should it become necessary.

I think sometimes that having the 'scores' can actually make you concentrate only on those rather than the person, your loved one and the life you should try and make the most of from here on in.

I didn't mean to sound like I was telling you off for asking a similar question again as you should ask away when you need to. Also really read the answers you're given off folks - we have all been at that stage where we are in a whirlwind of facts and fears.

Re-read the BLT cirrhosis page and leaflet and learn what you can about the condition.

Keep on looking after yourself in all this too.

Katie