New here - carer of husband with end stage liver disease

Hi

I care for my husband who has end stage liver disease, with Hepatic Encephalopathy, and further complicated by severe osteoarthritis.

I am feeling very alone and struggling to manage the effects that the changes in my husband are having on me and my family and looking for folk to chat with in similar situation. :)

12 Replies

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  • Hi. I was in the same situation as you for 6 months last year. It's not an easy life & you sometimes wonder how much more you can take. HE is a terrible symptom of liver disease & I assume your Husband is taking Rifaxamin & Lactulose to help this.

    Not sure about the whole of your situation but my partner had a transplant last July & we are now on our way back to a normal life. Hope this is the same outcome for you & yours.

    You will always find someone here to talk to so you need never feel alone.

    All the best.xx

  • hi fath you are not alone. meny folk hear have a sympathetic ear

    I am looking after my wife and she has HE , bad cirrhosis and osteoporosis, the loss of her mind is the worst. that and dealing with all that lactulose In my mind it's dialysis for her liver it is getting better slowly. for two months now .

  • Hi Faith I am in a similar situation

  • Hi hun I was in this situ. I had no idea it was his liver causing all the probs. His Docs gave him nothing and did no tests until he went yellow, then he was in hospital for 4 weeks, self discharged to due at home. I do hope with medication, your love and that of the family and friends he will start to improve.

    I hated the negativity and frustration he showed. He lost all sense of humour and ranted a lot. From being a hilarious life and soul of any situation he changed and in the end became very meek as he kept the seriousness of his illness to himself in the last 4 days of his life. I was very nieve, the hospital said he'd recover, I held on to that until our gp confirmed he was dying the day before he died.

    Ask as many questions as you can, keep asking, don't let the medics off the hook until you know everything you need - what is typical and what isn't in his behaviour and what signs to look for good / bad for example.

    Sending you hugs xxx

  • I know how you can feel alone, but just know you are NOT alone. I cared for my dad with esld from June until his passing in oct. I know how frustrating HE can be and everything that comes with this awful disease. My dad was probably the most difficult person to deal with at times. I never left him I couldn't. Please ask me anything and I will be honest or I am just hear to listen!

  • Hi Faith13, I'm sorry to read your in this position. My husband recently developed heptic encephalopathy after having tipps procedure due to having liver choroisis. He needed the tipps doing as he had severe chrons disease as well and his liver was putting too much pressure on his bowel so just removing his bowel without doing the tipps was too high risk. As it turns out he almost died because he developed heptic encephalopathy after the tipps and ended up in a coma in intensive care where they had to do the emergency op to remove part of his bowel as a way of trying to remove the toxins that were stuck in his blocked bowel. It was horreandous and before he was sedated he'd punched me across the ward and tried to bite my fingers off 😢 He has made quite a full recovery, 4 months down the line but because of his constant itching and night insomnia we are sleeping in seperate beds. Sometimes I cry myself to sleep at night as the future ahead scars me so much. He has got to have a liver transplant in the coming years, and we've only been married two years. I used to think his health issues were just his chrons disease and now I realise that the chrons was the easy part and the liver disease is the one to worry about. So I'm at the beginning of this rollercoaster journey really, but just wanted to let you know your not alone xx

  • Your story moved me. And I feel like hugging you saying it'll OK. HE is a horrific thing.. stay strong

  • Baby2016 I'm very sorry to hear that. Is liver commonly affected by crohns disease?

  • Hi Paulineunderstand, apparently it can effect about a third of all people who have chrons, they diagnosed my husbands liver disease and his chrons at the same time, he was 15 then. His body basically rejects his liver and he's been on tablets ever since!

  • I'm sorry to hear that. Thank you for replying.

  • I am in a similar situation but caring for a relative.....have been told end stage- abdomen has ballooned but have been told no ascites...but not sure what it is??

    I am not sure what to expect with end stage liver disease and what I'm supposed to do what I should look out for. I need to know so i know how to manage. Also started a new job but it is getting very demanding as having to keep eye on relative and be a carer.

    Don't quite know how to deal with their depression as i get the brunt of it all.

  • The British Liver Trust website has an excellent page detailing the symptoms of cirrhosis and it's likely development. It's at:- britishlivertrust.org.uk/li...

    End stage would normally be when the liver is decompensating and really struggling to fulfill it's more important functions - so symptoms associated with portal hypertension where the blood is unable to filter through the liver properly and starts to back up causing ascites and oedema, hepatic encephalopathy and potentially fatal internal bleeds. HE can lead to major behavioural and personality changes, sleep pattern alteration, confusion, memory and concentration difficulties and in more serious cases coma. HE is a side effect of too many toxins building up in the blood stream and affecting the brain. It would be hoped that your relative is prescribed LACTULOSE and RIFAXIMIN to deal with the toxins.

    HE can also lead to hand flapping (asterixis) and as toxins and body chemicals build up in the blood stream it can also lead to a maddening itch (pruritis).

    Liver failure is a horrendous illness which I hope never to witness with my own husband who has cirrhosis (his is currently compensated after going through a period of decompensation).

    It will be tough looking after someone with End Stage Liver Disease, the BLT has a page on caring for someone with liver disease at:- britishlivertrust.org.uk/li... .

    If it becomes very difficult remember that your local social services/health board might be able to render help or local hospice type institutions if it becomes end of life care that is required.

    Wishing you all the very best, Katie

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