Alcoholic liver cirrhosis

[1727]

Hi all, I am a care taker of my brother who was diagnosed with liver cirrhosis stage 3 in Feb 2017 with all symptoms of hepatic encephalopathy, ascites, nose bleeds, chest pain and highly fatigued. He was in ICU for 3months but soon after the discharge he started his drinking all day. He is on medication to control the symptoms and he is relieved too but still drinking alcohol day and night. I have no idea where we stand and what is going to happen next. I would really appreciate if any of you can suggest what needs to be done next. He was in rehad as well but started drinking again. He experiences severe withdrawal symptoms.

[Hidden]

Hi there 1727, this is such a hard time for both you and your family members to have to face. Sadly there isn't much you really can do until your brother really want's to stop drinking. It can only be HIS choice. At the moment he wouldn't be considered for a liver transplant, or even go on the waiting list. He'd have to be alcohol free for up to four to six months before he's be considered.

I personally have often wondered if the severity of the hepatic encephalopathy could be construed as being a mental health issue in law. If so could a person be sectioned under the mental health act or not. I don't think this has ever been tried. A persons actions with hepatic encephalopathy can be rather aggressive at times and not all people suffer the exact same conditions. It could be argued that a person could become a risk to himself or to others. If the hepatic encephalopathy is severe, then this damage can become permanent.

If he was to try and stop drinking, then I think his stage of alcohol drinking would have to be monitored and cut down slowly so as to prevent his body going into shock. He really needs to enter into a detox program. This would be treating his physical condition, but the mental issues need to be addressed at the same time. There is a reason behind his need to drink, okay so now it's become a habit, but something happened in his past that has made him go down this road. That issue needs to be identified and addressed.

I wish you and your brother well, he does need help and sometimes we have to be cruel to be kind. What your brother does have going for him though is a wonderful brother who genuinely cares about him. That support is so important, even though at times it may feel it is so unappreciated.

I sincerely hope that others in this forum will offer you some more advice as many have been in the exact same position as yourself.

Good Luck my friend, and hang on in there and don't lose faith.

Richard

[1727 in reply to Hidden]

Hi Richard,

Thanks for replying. We have tried what all we could but nothing helped. He has become too aggressive and we feel stopping him from drinking could be more dangerous. The day he was discharged he went out to drink the same evening. He was hallucinating at night next morning he was vomiting we decided to take him to doctor but before visiting the doctor he went out for a drink and dint come back the entire day. Alcohol has taken over his body. Well thanks for your concern but i sometimes feel we are loosing each day by this. I am too tensed what is going to happen next.

[Hidden]

My reply to you went to bridesmum.. sorry. Hope you find it

Laura xx

[1727 in reply to Hidden]

Hi Laura,

Thank you so much for your reply. We have seen many one to one counsellors but the result remains the same. Once the session is over he goes out and get himself a drink. One of the counsellor even asked my sister in law to look for another partner as their is nothing left with my brother so we are more tensed after listening this. Right now he is not facing much complications because of the medication so his drinking is at the peak. He is taking alcohol with medicines and I don't know how is it going to react. He sometimes have severe hallucinations and we feel he may harm himself someday. We are helpless right now. Days are passing and his drinking in taking over his body. I don't know how much time is left. Is their anything particular that the person experiences during his last time ?? Or we should expect he will drink like this only and pass away ?

Thanks

Abhishek

[Hidden in reply to 1727]

Oh god it's hopeless isn't it? Have you tried residential rehab?

Yes my husband had hallucinations too due to lying to his GP about how much he actually drank, just told him he was depressed after coming home from Australia ( where he'd actually been drinking loads watching the cricket) so the doc put him on antidepressants .... a lethal cocktail.

I can only tell you about how my husband's life ended, others may be different....

He'd been staying at his Mothers as I couldn't cope in the end trying to run my business and kids to after school activities etc. I told him if you quit the drink you can come home.... I had to be very tough and stand my ground. After he'd had started this councelling I allowed him home at weekends and he loved it. He was gradually becoming my Andy again although still very sick, jaundiced and frail.

He slept downstairs on the sofa bed and in the early hours of the Saturday he came upstairs saying he was cold, knew he was going to die but didn't want to die downstairs on his own.

So I let him on the bed and held his hand. He started sniffing I turned the light on to see what was wrong, blood pouring from his nose. We couldn't stop it so called 999. Ambulance came , I explained his condition and was rushed to the high dependancy unit. The next day he was in ICU. They told me his liver has failed and his kidneys and was struggling to breath. He had tubes going in and out of everywhere, whenever he tried to speak blood spilled out of his mouth.

On day 10 I got the early morning call to go in he was deteriorating rapidly. I arrived to find him wearing a massive oxygen mask pumping air into him with the effect of travelling down a motorway at 80 miles per hour with your head out of the window. I was taken to a side room to be told gently by 2 amazing doctors that he doesn't have long to live.... 3 to maybe 36 hours. I took a deep breath and shed some tears before I went back to his bedside.

He couldn't speak and was barely awake. I sat and held and stroked his hand. At 4.15pm they spoke to me again to say the kindest thing they could do for him was to top up his dire morphine and let him go. I agreed.

The nurse said ok Andy you've done really well with the mask I'm going to take it off and lay you down now so you can get some sleep. She removed the mask he turned his head towards me and gave me the biggest smile I had seen him do for a very long time. I kissed his forehead and told him I loved him. I sat holding his hand while the nurse put her arm around me and we watched his breaths and heartbeats gradually diminish on the screen till he was gone. It was all over by 4.50pm.

What else can I say ?

Alcohol is poison it's addictive it's a killer. It serves no purpose. It causes problems and solves none. It wrecks minds, lives and families and creates devastation. But lines the coffers in downing street which it seems is obviously far more important.

[Lilybug in reply to Hidden]

So sad xxx

[Hidden in reply to Lilybug]

Yes it is dreadfully sad and always tough to write but it has to be said, somehow the message must get out there.

Thanks Lilybug xx

[Hidden in reply to Hidden]

So brave of you to share Laura, I really hope that the harsh reality of death by alcohol hits home, it's not just about the damage it causes to the person, but those who are in away just innocent victims and who can become traumatised by the emotional turmoil this disease leaves behind. NACOA is a wonderful compassionate charity that tries to help those children effected by alcohol.

Keep up the great work with NACOA Laura: nacoa.org.uk/

[Hidden in reply to Hidden]

Thanks Richard.... you keep up your hard work and determination with spreading the word of the dangers too xx

[1727 in reply to Hidden]

I am so sorry to hear what all you have been through. Thanks for sharing your story. I ll make my brother read you experience. I hope this can make him realise how badly he is playing with his life and with our emotions. Thanks again for sharing your eye opening experience.

Abhishek

[Hidden in reply to 1727]

I sincerely hope it makes him realise what he could be facing . Good luck to you and your family with the struggle.

Laura xx

[hillyfields in reply to Hidden]

that will stay with me too Laura. So sad. But this is the reality of alcoholism. It can't be sugar coated. Abhishek, I'd like to hope your brother will come to his senses if he does read what Laura says but it's possible that he won't. At least you and your family may be prepared for what might be to come. Good luck.

[Hidden in reply to 1727]

How is it going with your brother now ? X

[1727 in reply to Hidden]

Hi Laura

I made him read your post but that hardly made any difference. His reply was "I am fine so why are you comparing me with someone who was so unwell". He is at stage 3 cirrhosis with episodes of HE and ascites. He vomits almost daily but he thinks he is doing well. We tried but nothing is helping him to come out of this vicious circle. Fingers crossed. No idea what will happen next. Our entire family is suffering. We are preparing ourselves for the worst but ya for now he is doing well with no major symptoms. Thanks to you Laura for all the support.

Abhishek

[Hidden in reply to 1727]

There's nothing more you can do for him, you really have done all you can so sadly it's all up to him now. Just take care of yourselves as a family.

Thoughts are with you

Xx

[Will3 in reply to Hidden]

This post will stay with me for a bit, powerful stuff.

Thank you for sharing that Laura.

Will

[erica1960 in reply to Hidden]

Laura, that is a heartbreaking read, and an agonising memory for you, I am so sorry you and your husband had to go through it. I hope you had (and still have) the love and support of good family and friends to guide you through such a horrendous experience xx

[Hidden in reply to erica1960]

Thanks Erica. I had my parents at the end of the phone. As far as discussing with anyone else, I preferred to keep it to myself, even a recently as 10 years ago it wasn't the sort of thing you would talk about. My kids were my priority so I would get up, paint on a smile every day, take a deep breath and get on with what had to be done.

Obviously our friends knew he was seriously ill once they had seen his weightloss and the yellow skin, but never asked so we never mentioned it. I was 1 of those situations where people don't know what to say so say nothing. I guess these days it is talked about a lot more as with many other health issues which is much more helpful and supportive.

Xx

[Hidden in reply to erica1960]

Anyway, how are you Erica? Did you manage to have your MRI ok? Did you find a method to help with the claustrophobia?

Xx

[erica1960 in reply to Hidden]

Bless you for remembering Laura. Having had to have a previous MRI aborted (I scared myself at my meltdown) I knew that if I was conscious, it simply wasn't going to happen, and didn't want to waste everyone's time and money. I found an open scanner in London which I feel I could tolerate, but my Consultant said to hold off until my biopsy results, and he also wanted to talk through some recent ct scans with the radiologist. My recent bloods were much improved, so I am praying that weight loss, stopping my pain relief and of course quitting alcohol have given my liver a chance, but it's a waiting game. I've done an awful lot of soul searching this past couple of months, and in all honesty my lifestyle was just a ticking bomb. Thankfully, I've turned myself around and chosen life xxx

[Pitsam11 in reply to 1727]

It’s sickening to be in the position of forced to wonder what to do and if/when the alcohol will finally take their life. I hate that I look for signs of dying. It makes me feel icky about myself, like there’s something strange about me!

[Hidden in reply to Pitsam11]

The post is a bit older. His brother has passed away now.

[Pitsam11 in reply to Hidden]

Oh my goodness I’m so sorry and thanks for letting me know 😢

[Hidden in reply to Pitsam11]

No need to apologize at all Pitsam. It was a really hard time for him as you can relate with your mom. I totally see why you reached out. Not sure if he will be back on the forum again now that his brother has passed and just didnt want you to wonder why he didnt respond to you. 🙂🙂

[Pitsam11 in reply to Hidden]

So sweet of you, thank you 💕

[Hidden in reply to Pitsam11]

❤

[Pitsam11]

My mom still drinks with all the same symptoms! So sorry...my only advice is to watch you’re caretaking. With me that has to be different than losing my life. Boundaries 🙏