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British Liver Trust
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Decompensated liver

Hi.i am the daughter of two alcoholic parents.sadly mum passed away 3 years ago due to alcohol related problems and since then my father hit rock bottom and hit the bottle hard! Hes been in and out of hosp and been diagnosed with a decompensated liver.he was admitted to hosp in march with ascites , bladder rete tion and slightly jaundiced.was in there a week,when he came out he didnt touch a drop of alcohol for 3 months!... bare in mind for years he was drinking a litre of whiskey per day and sometimes more if he could get it!

In june he decided to start drinking beer/lager.started with non alcoholic then shandy now about 6 cans lager a day and yesterday i found a bottle of wine as well!

Hes damaged the cerebellum in brain.blood doesnt clot.platelets low.most of the bloodwork is low.slurred speech.wheelchair bound now due to peripheral nueropathy.eyelids semi drooped.i think slightly jaundiced and ascites looks to be appearing again.this is the current state at the mo as well as memory loss.odd sleeping patterns and a whole lot more!

Last year was absoloutely horrendous! Loads more ailments.up to 6 falls a day.diahorrea.muscle wastage.slept up to 22 hrs daily.hideous angry mood swings.anorexia.vommit blood.hallucinating and basically days away from dying!

Hes eating now.seems happier and willing to go out in public. Seems like a vast improvement as he really was on deaths door.however,the hospital and gp have talked about transplant but have said he wont be offered it as he cannot commit and abstain from drinking.hes not at all well as hes now decompensated.

I just wanted to offload and question his lifespan and basically find out about your experiences.thankyou for reading....if u managed to get to the end !?

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Liver disease doesn't play by the rules. It's amazing how long some patients can chug along, even while continuing to drink.

When the end comes, it may be fast. If he isn't getting regular endoscopies for banding varices, a massive GI bleed is possible, and this could kill in an hour without swift emergency treatment. Ascites can become infected and lead to sepsis, and falls can cause hemorrhagic stroke.

You're earning Karma points with all your caregiving. This won't go on forever, but there really is no way to accurately forecast life expectancy in these patients.

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Thankyou for your reply.i am learning, and have learnt on this journey, the turmoil and upset this causes.the highs and lows it chucks in its wake.just as one thing eases or seems to get better,another rears its ugly head.

A massive GI bleed is what the family GP has mentioned as her main worry,along with stroke and heart failure.gastro dept have signed him off and transferred him to hepatologist.he has a liver scan due in sept as a 6 month check from hosp stay back in march.he was told of the warnings all along ,the severity of it all but with his dementia hes now got, he just forgets and picks out the bits he wants to hear.bypassing the obvious important stuff! (denial once again).

He was told in march he would be lucky to reach 6 months if he carried on drinking and longer if he abstained. Hes just been tested for hepb and hepc amongst a whole new set of bloods looking for other things so we are also waiting for news on the results....to be continued.

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Hi Blueeyedfairy

Welcome to the forum, we are sure you will find a lot of excellent support from the members.

It seems that you are an amazing support for your dad, but please don't forget to look after yourself too.

Have you heard of the organisation Al-Anon?

Al-Anon Family Groups provide support to anyone whose life is, or has been, affected by someone else’s drinking, regardless of whether that person is still drinking or not. You may want to consider getting in touch with them, here is the link;

al-anonuk.org.uk/

Best wishes

Trust1

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Thankyou.there is one about 4 miles away which im tempted to go to.ive been trying to pluck up the courage to go tbh.ive been reading forums for a long while now,and decided to join last night.

Its a starting point for me to share my own feelings and experiences.i know it will help me build confidence to go.thankyou

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Well done. Hopefully you will find it a supportive environment. You are still going through such a traumatic time it is important to focus on some self care too.

Warm wishes

Trust1

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Its not easy opening up about this.ive been brought up around alcohol and its effects.my brother has turned his back to it all so i dont get much support from him either.i have good friends and husband whom i confide in but some things are just not easy to discuss or explain.

here, im sure,i can seek some familiar understanding with others .

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Bless you, I'm sorry to hear of your mum's passing, you are an amazing person caring for your father, I know how hard it can be, I looked after my own dad for 16 months but that was due to cancer that we thought had gone as he has his left lung removed, but 3 months later it spread to the brain and nothing could be done. It was hard work, like taking care of a baby, my sister turned her back on me too, she never even came to any hospital appts pre or post surgery, I was not getting any sleep and I had no one else to fall back on .

After my dad's passing it hit me hard, and i took to the drink again ( i have cirrhosis) . My body was on constant fight or flight for 2 yrs after I lost my dad because that's how I was 24/7 when I was taking care of him.. so what I am trying to say is please get help, go to al anon, ask for help..I wished I had taken more care of myself but I never did.. sending you my best wishes.. Linda x

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Sorry to hear about your father linda.very sad x

i too feel like im looking after a baby! I love my father dearly and miss my mum terribly.the one person i always turned to and shes not here!

I am mentally getting closer to al anon.i know they will be of help, but not sure what my needs are for myself as of yet? Only one way to find out i guess? And thats to actually go!

I worry about the hole that will be left after dads gone, but do try n make the most of the time we have inbetween.im taking him on holiday end of sept....fingers crossed it goes ok cos last year was a disaster!....like you wouldnt believe.

Do take care of yourself and your own healthcare needs linda please xx

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Hi blueyedfairy, thank you for your kind words,

I too lost my mum 28 yrs ago. She was only 51, younger than what I am myself now, I didn't really have that relationship so to speak as all I remember was illness and hospitals and my dad caring for her.

Just me and my sister now of whom we have become very close now

She is having surgery on Friday morning so I will be with her as hard as it will be for me with my health issues, will.be waiting all day untill her gallbladder is removed then taxi to her home after.

Please don't worry about what you want for yourself or even what to say at al anon, it will all just come out naturally.

I really hope you have that holiday in September 🙏🤞.. we had planned a private box and buffet and my dad was to be in the Birmingham city fc match day programme, all paid for by the club, dad was a massive bham city fan . We were all villa fans so we had a good old banter. He was due to go on 1st September even though nurses had to accompany us , it was to be a suprise.. but he passed away on 31st August 2012, I will never be the same again.. not ever..

You make sure you relish every second together whatever may or may not happen. Take care of you! Eating nutritious food and decent sleep. Keep.in touch and if ever you need a chat PM me .. love Linda x

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Is this the sister that turned her back? If so im very glad that sges seen sense and you are close once again.amazing what a difference that must be.

Very sad.your dad passed away the day before the football event! Im sure he wouldve been looking down on it all and wouldve loved the idea im sure.

Good luck also for your sisters surgery friday.all you can do is support in times of need and take care also .

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Yes, I only have one sister, she really suffered with guilt when dad passed as she never did anythng to help me , I was the one who went downhill adter for 2 yrs drinking, but she took control after that and pulled her socks up with all.the funeral arrangement , yes we are very close now.

Oh sad would have been im sure but wasn't meant to be .😐.

Thank you ! I'm hoping all goes well Friday. Take care and thank you for your kind words x

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Hi Millie.

How are you doing? You've been surrounded by alcohol abuse most of your life haven't you? You battle on though despite it all and are always so lovely ..... super woman !! 👼xx

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Hi Laura, how kind of you.. I'm ok thank you for asking. How are you?

Yes my life has been surrounded with alcohol, never drank while pregnant, infact I hardly drank at all untill early 2000, went downhill there on. But hey no lol.

Oh im.no superwoman 🤭😊. Just like to help others if i can, I actually enjoy it . Takes away my problems for a while. Xxx

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Hi. You could also contact NACOA which is a small charity based in Bristol offering support to children (whether young or adult) affected by and or living with alcoholic parents. I wish I had known about them when my husband drinking himself to death and making my life a living hell while struggling to bring up my 2 children with as normal a life as possible. You must look after and think about yourself as much if not more than you do your Dad. It's so damn tough and I really feel for you being forced to watch him do the same to himself as your Mum did. Its so very sad. Stay strong sweetheart. Xxx

NACOA 0800 358 3456

helpline@Nacoa.org.uk

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Your father has proven that he can cut down on drinking. I had similar symptoms and feel that I was very lucky. I’m not sure if my experience will be of use but here goes...

I was buying a bottle of rum when the label started to swirl. It turned into a skull & crossbones with TOXIC written below. All of the bottles in the isle were identical. I went and picket my other messages then went back to the rum. It still said TOXIC but started to swirl again. It settled to a picture of George Osborne saying GIVE ME MORE TAX.

I stopped drinking . My body was more sensible than I was. I took heed and never touched it again had a transplant two years later.

I have tremendous respect for anyone who beats an addiction. I was lucky.

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That is really good news gordon! Likewise i am full of admiration for kicking any habit!

Sounds like you got out of a spiral in the nick of time! Hope you are keeping well after the transplant....?

Unfortunately money is no issue for my father.tax or no tax.just wish he could see the skull n crossbones label and take the time to read it!

Im taking him to a veterans support group tomo, the first real interaction through substance misuse (hosp referal).

I just need him to listen! There are lots of support groups attached to this organisation so im pretty hopeful this will be good for him.its not his usual bag of things to do and surprised he even agreed!....see what comes.....

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I’m well now, thanks. Good luck with the support group. Keep trying and don’t give up. Thinking about my daughters helped me to stick it out after I made the decision to quit.

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If only that really were printed on all the cans and bottles !!

Well done for beating the beast 👍

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I wont give up.forever hopeful.never too late to try, irregardless of what lies ahead.

Family support is very important.glad to hear you are well.

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How's things with dad? .

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Well hes no different to last week tbh.we have hospital apt tomorrow so hopefully find out some more on the bloodworks....

Went to a veterans support group last week which he enjoyed actually,much to my surprise!

Still not reduced on the beers tho which is what hes supposed to be doing.fighting the same old battle ,day in day out.sick of the sound of my own voice! But i shall say my bit till my voicebox runs dry.

Hows your sister? Did her op go ok friday?

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Well i hope the hospital keep on to him , most important the drink stops , bkess you, have you contacted an anon at all for some support for yourself? .

How lovely was that! Even more so that your dad enjoyed it ! .

Oh my sister's op went smoothly thank you for asking 👍😊. She's still sore but taking things slowly as the only time she's in no pain is if she is lying on her back , took its toll on me though which i knew it would do . Good luck at hospital, let me know how you get on .... linda x

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Well linda,the bloods are still shocking.severe aneamia is the main cause for concern at the moment.hes been taking iron supplements but its not made an ounce of difference.if anything ,his level is lower!?there is no bleeding so its a mystery at the moment.He has a CT scan tomo to find out whats going on.zooming in on the chest,abdomen and bowel.his recent bloods revealed some level of heart failure and he also has a chesty mucusy cough which doesnt seem to be resolving.fingers crossed we get some conclusive answers .let you know more when we get some news xx

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