British Liver Trust

Decompensated Liver Help Please

Hi

I don’t know where to start other than I’m at breaking point with my ex husband. He was very ill last July to Dec when diagnosed with decompensated liver and alcoholic hepatitis developed sepsis nearly lost him few times

They told us he had 6-12mths to live if he didn’t drink he could live longer.

I ended up writing a blog last week to get everything off my chest because I’m so alone it’s marriedtoanaddict.co.uk fo anyone who wants my full story.

We found him a place to live 2 mins from me which helped me if he needed anything I was there in seconds. I’ve bent over backwards as we have a daughter

8 weeks ago I found out he is drinking again 2x 3ltrs extra strong cider a day as well as abusing OxyContin. He doesn’t know that I know what’s the point he’ll only lie in fact looking back I don’t think he ever stopped drinking

His health has started deferiatng similar to how he was last year vomiting everyday rectal bleeding bloating swollen leg with gold ball type swellings. We found out in January 5cm oesophagus has stripped away part of his gullet, also there is a problem with his small bowel the report says burnt out! Whatever that means

He’s not seen his specialist since Jan until yesterday he was concerned re swelling n bleeding n has booked a colonoscopy and endoscope in a couple of weeks, he asked a number of times if he was drinking and told him no I had too look away

The last couple of days he started having nose bleeds lasting up to half hour.

My question is this I’m not sure how he is still alive given the abuse his body is having.

Are nosebleeds and swelling in legs part of liver failing?

How long are we looking before his body gives up?

The consultant checked his groin yesterday but not sure why.

I’m at the end of my tether if you read my blog you’ll understand why.

Thank you for reading and commenting in advance xx

Addict alcoholic

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Hi

So sorry to see hear what you are going through.

It sounds very much like he is in the late stages of liver disease. Most of his symptoms appear when the liver can no longer cope.

I understand how you feel I was married to an alcoholic but in my situation I gave up and got away before he got to this stage so I didn't have to cope with him. He did die later but in the meantime I met somebody who has hardly touched alcohol for all of his life but still ended up with liver disease , due to a genetic fault. Needless to say I looked after him and he did get a transplant in time. So I do know how you are feeling at the moment. You do need somebody to help you even if just to listen.

Good Luck

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Thank you Carmik. We have been separated for 3 years as I couldn’t cope living in the toxicity.

When he took so ill last year I did everything I could for the sake of our daughter. Even Drs said if it wasn’t for me he would have died. Now I wish I hadn’t stepped in and I may sound like a bad person but it’s like I’ve gone back in time too last year.

How his body is still going is beyond on me it really is. That’s why I was looking to find out if the symptoms he’s displaying could be signs of his liver failing now.

He’s not yellow which I would expect but is a grey tiny orange and dark eyes.

I’m sorry too hear about your new partner how awful but hope he is doing well since transplant.

Can I ask how long your first husband survived from diagnosis? Did he continue too drink?

Best Wishes. Xx

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Hi he was one of those top up drinkers. Carried on for many years. I split when I was 38 and he died when I was about 70. He had good run but was always I'll and ended up like a tramp.

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Hi

It saddens me to say he seems to have gone past the point of no return. All the symptoms you described are from end stage liver disease. I didn't even have half of those symptoms and was put on a semi urgent transplant waiting list. The nosebleeds definitely are a sign of the liver struggling. I was getting them frequently in the months leading up to the transplant and every other month in the years prior. If only I'd known what was causing it.

To even be considered for a transplant, he has to have a proven minimum of 6 months abstinence as well as a lifelong sobriety pledge. Perhaps he feels there's no hope, hence the continuous abuse on his body?

My heart goes out to you. Having lived with an alcoholic myself (my dad), I know how hard it can be to cope. Amazingly my dad never got liver disease so at least there was one less thing to worry about.

Good luck, I sincerely hope you manage to turn things around.

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Thankyou yes I ageee he would have too be alcohol free to be considered for transplant but I don’t think even that would make him realise too stop.

I just see the deteriation and pain he’s in and think I’m witnessing a slow and painful death. Some days I wish it would be over so he is free from whatever his demons are as well as us being free.

I think the consultant is in for a shock when he gets his bloods back. Because surely his levels will be through the roof and not normal

I’m happy too hear you got transplant how are you doing now?

I’m driving myself mad searching the net looking for his symptoms. When I spoke too him this morning he was in bad way in pain and said he started with nosebleed at 4am and it took half hour to stop my first thought was his liver is failing along with recital bleeding swelling etc xx

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The British Liver Trust page on Cirrhosis will help with your search for symptoms and what they might reflect. I have to agree with what everyone else has said in that sadly it does appear he is displaying symptoms of very late stage symptoms. britishlivertrust.org.uk/li...

When doctor was checking his groin it was probably to check for signs of fluid build up in his scrotum as this also comes along with ascites and oedema. I wouldn't have thought the doctor believed your man was still sober with the symptoms he's displaying.

You need to look after yourself in all this because this isn't going to be pleasant.

Katie

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Thank you Katie.

Yes I have too agree with you that the consultant has an idea he is still drinking or at least I hope he does. As he asked a few times if he was.

It may sound harsh too some just want this nightmare too end for him too be free from his demons and for us to move on.

I’ve spoken to a lovely lady at liver trust earlier who’s seen my post, if your reading this Thank you for taking the time too talk to me.

As much as I want him to be free I also can’t bare the thought of him dying a painful death especially alone x

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Everything's gone extremely well so far thank you. Other than some minor fatigue, I'm back to my old self.

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How long can someone go on for with these type of symptoms, before the body gives up?

I went the shop earlier apparently he bought cider at 9.30am today. My sister saw him around 12pm coming out of his place she said he looked terrible and was shuffling not even walking.

I’ve just been the shop for him as he needed gaviscon said it’s too painful too walk, he looks shocking and could hardly walk to the car doubled with pain. I did suggest calling an ambulance but he said he just wants too get in bed as he’s freezing and can’t get warm and doesn’t want to be lay in A&E for 12 hours.

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He is in a bad way. In answer to how long can he go on like this? How long is a piece of string is sadly the answer. Could be weeks, months or he could suffer a massive internal bleed and goodbye (sadly that's what happened to ex-MP Charles Kennedy).

Every single thing you posted about his shuffling gait, being cold, requiring gaviscon for stomach pain etc. are all showing he really is poorly. If he starts vomitting blood it would be a 999 job and off to hospital and that would be the best place for him to get help, but, with the lying and denial he's not yet realised or isn't willing to realise how serious this is.

Katie

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My stomach is in knots his phone is dead and he’s not put it on charge which he always does, so now I’m sat watching my phone for the two ticks too show it’s been delivered which means he’s ok as he will have charged it

I’ve got a really bad feeling in the pit of my stomach which won’t go

I’m sorry if I’m annoying anyone today I just don’t know what to do anymore and never did I think I’d be in the same position as I was last year again I truly foolishly believe he was doing this for our daughter how wrong was I x

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Im so so sorry for you. Sadly not every alcoholic has the drive to give up im afraid. Im a recovering alcoholic since 2008, yes i relapsed in 2012 as the loss of my dad was way way too painful.

Glad to say i stopped and been sober 4 yrs..stay strong for you !! The addiction is way too strong now and sorry to say it sounds like he is on borrowed time. Big hugs.. linda

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Thank you Millie and well done too you for doing so well

I’m sure your dad it watching over you and very proud of you for getting the help x

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Thank you. 💜. How are things now? X

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Hi Millie

The same really Thursday who looked dreadful I do believe his symptoms are worse than what he’s telling me he could hardly walk.

He turned up yesterday I don’t know how he walks here it’s only 5 Mum walk but you can see the pain he’s in I have no doubt it’s horrendous. He’s taking OxyContin for the pain but became addicted to that 2 years ago where he was snorting it and I k ow he still snorts it now how he hasn’t overdosed is beyond me mixed with alcohol is deadly in itself.

He’s taking 96 tablets the last three weeks in 2 half days when there meant too last a week so by weds he’s ran out and Is then mithering me for pain relief which I refuse point blank, there was a point he was stealing medication from his parents I found out last year when I’d gone too his home and found him unconscious there where boxes everywhere with his fathers name on when I googled it they where heart tablets so he doesn’t care what he’s taking. I even found empty boxes of my medication that proved too me he was stealing my medication even though he denied point blank.

I what’s app him last night See how he was it showed one tick I knew he gone the shop. I drove down to the shop but I’d just missed him the owner said to me he’s just been he’s not good he’s looking very bad I see no good he’s lovely guy slight language barrier he’s from Sri Lanka.

I called the hospital yesterday too book his colonoscopy and endoscope was surprised given the rectal bleeding etc his appt is 22 May. I thought it would be done sooner, but I’m thinking does consultant know he’s worse than he is and just booked it as routine.

It’s really strange as my daughter is all for daddy but this week she has not mentioned him once where normally she be asking to see him and go to his.

I’ve stopped responding to his friends asking for updates because I don’t think they believe me after last year when the Drs said he could die and bounced back, I think they think I’m exagriating it all. I found messages on his phone he’d sent to two of his closet friends calling me ex psycho wife and he thinks I have an agenda too push everyone away and have him too myself I’m so angry after what he’s put us through and how much I’ve done for him. They don’t know the half of what I’ve suffered think that’s why I did the blog too get it off my chest. Because I’m telling them one thing then he’s saying if she gets in touch don’t believe her I’m fine not drinking life’s good. He’s even told them he’s taking boo too Dubai!!!!

God forgive me feel at the minute like saying here’s a bottle of vodka here’s as many tablets as you like put yourself and us out of this misery and pain.

I’ve not heard from him this morning part of Wishes is this it has something happpend but I know he’ll be knocking on at some point or sending me a message I just don’t see this ending if I’m honest xx

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Oh sweetheart, im so sorry your going through all of this stress and constant battle.

As a recovering alcoholic i know only too well how frustrating it is for loved ones. My god i was given so many altimatums but i had to hit my rock bottom and want to want to stop. Even though i lost my dad which is a heartbreak even now, i thought my mum and dad did not bring me in to this world and raise me to throw my life away, so even after his death he gives me strength.

If the hospital have not given an emergency endo and colonoscopy then in my eyes as bad as it is of me to say it looks like they know he cant be helped. The NHS is struggling as it is.

Why oh why is he taking all them tablets!!! Good grief. How is he still walking.

The power of the addiction has taken hold and he has no fight in him im afraid.

All i can say is , as hard and as painful it is for you is to take a step back or you will end up driving yourself crazy. You need to think of YOU and your daughter. As regards to his messages take no notice as that's the addiction talking not him

Please take care and if ever you need to chat in private all you need to do is message me . Sending big (( hugs)) .. Linda xx

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Bless you, you are not annoying anyone. Stay as strong as you can x Mel

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Thank you xx

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Bless your heart you must be very worried. I can only agree with what everyone else has said. Please stay strong and look after yourself xx

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Thank you xx

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I'm affraid this is just about the end of the line. His organs are failing hence the endless nosebleeds... he's blood no longer clots.

I keep saying we, the wives and families suffer far more than the alcoholic. They have all the help and support in the world as long as they admit they are addicted. Everyone around them can see how and why they are distroying themselves but they can't or won't face up to it. But there's no support for us. You have to be incredibly strong and look after yourself. Put yours and your children's needs first. It's sounds harsh but you almost have to become as selfish the alcoholic is.

My husband died of alcoholic liver disease, multi organ failure and broncho pneumonia 8 years ago. The problems he 'thought' he had are over for him. We were left picking up the pieces of our lives he could have destroyed if we had let him.

I know what you're going through. I wish you well and that your children thrive and are learning a hard lesson about the dangers of alcohol

xx

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Thank you for your kind words and sharing your story.

I have become more selfish but then feel guilty it’s a rollercoaster.

He turned up here this morning looking grey. One question I keep forgetting too ask do you have too be yellow to know the liver is not working?

The state he was in last night im surprised he made it here this morning, he smelt of vodka so think he’s back on that as well as the cider. He wasnt here long as it was early I was tired as I’d had little sleep said he’d been the toilet and passed large clot and blood told him call the dr I can’t do anything and he just stormed out.

As he walked away I thought your a machine the hammering your body is under with all the symptoms I’m beginning too think he’s immortal

When his battle is over your right he’s free we aren’t as it’s us picking the pierces up. His family have no clue and I’m not calling them this time round it’s pointless they believe his word over mine.

As for alcohol I don’t drink and haven’t for 10 years and never will. My kids don’t see alcohol in our home just the destruction it’s doing too him would put anyone off x

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Darling you are doing all the right things. When I told my late husbands mother and sister he was in hospital being detoxed he's been diagnosed alcoholic, they buried their heads in the sand as far as he did so couldn't even lean on them for support.

As far as turning yellow goes. It happened while he was being detoxed in the November. He continued drinking. I chucked him out he went to his mother's. She phoned me sounding surprised that he was stealing her money... yep I told you so! He got 1 to 1home councelling from the Matthews Project in Norwich and was dry for 3 months. I allowed him to come home at weekends but he was seriously ill and died in ICU 6 months after turning yellow.

I cleared out his clothes.... empty cider can shoved in the sleeves of his jackets and stuffed in the bottom of his golf bag.

There should be government health warnings on cans and bottles and I wish I had a photo of him in ICU to stick on them with it. Alcohol sales would plummet overnight!

X

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No you do not have to look yellow. I was never overtly yellow. However, I was mostly just very pale and ashen faced. I seem to notice that most people I see in clinics with liver disease have that pasty ashen faced palour.

Feeling cold all the time is also a sign of advanced liver disease. Everything else you describe also doesn't bode well i'm afraid. He needs help and he needs it quick.

I don't know if its even possible to do this, but, it may be worth trying to speak to his doctor yourself and explain what you have explained here. They may not be able to discuss things with you, but you being a close relative may negate that problem. It is though worth a try if you have no other options. You need to let them know your concerns and what you have seen, warts and all.

You need to do this really to get their advice as to whether there are any organisations able to help you sort this problem out. Whether that means getting him the help he clearly needs or just generally giving you ideas as to what else you could try. I have absolutely no idea whether this will work, or even if its an option, but its worth a try. You have nothing to lose now. You, and he, may say that will prevent him from getting a transplant. They are going to find out anyway so don't worry about that. Also, if he carries on as he is that wont be an option anyway.

Whatever the outcome. Good luck.

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I am so sorry you are going through this, and that your ex just doesn't seem to want to get help. I was diagnosed with alcoholic liver cirrhosis and given 2-3 months to live IF I stopped drinking. That's how bad it got and how I had gone. But I was ready to stop the madness when I awoke from a coma in one of the most prestigious hospitals in the country. Even if I only had a few months left on this earth, I refused to go out a drunk. That was 8yrs ago.

I only say this in hopes that it might help you find some sort of peace. Not every alcoholic gets sober because not every alcoholic wants it. I found my hope in a 12 step recovery program. There are also recovery programs for you and your daughter; one is called Al-Anon for you, and the other is Al-Ateen for her. These recovery groups are to help your family move past the madness and insanity of the alcoholic disease. Sadly, it doesn't just affect the alcoholic; it also hurts the family and friends of one. Al-Anon groups are everywhere, filled with people just like you and are only there to help each other get through these hard times. You can just search google for groups in your town. They are anonymous, too, so you won't have to worry about any shame. There are also facebook groups you can look up as well.

I wish your family the very best as I am thinking and praying for you.

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Thank you and well done to you for breaking the cycle and being drink free for 8 years. I know it must have been hard and hope you are proud of making the changes to be here 8 years on.

I’m going too look at Alnon today as liver trust gave me the details when i called yesterday.

He’s been bleeding again this morning from back passage of that was me I’d be terrified he doesn’t seem phased. He’s so in denial he’s convinced that the only problem he has health wise is when they do the tests on his small bowel that it will be bowel disease like Crohn’s disease which is what I have. He doesn’t acknowledge the liver what so ever

Wishing you all the love luck and success in the world xx

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What he fails to understand is that liver disease, in his case, would be one of either cirrhosis or hepatitis or both, and that they are gastrointestinal diseases just like Crohn's; however, cirrhosis and hepatitis kills if not dealt with. Denial is a horrible thing to watch, my friend. I knew a fella who had to be constrained to hospital bed in a mental institution b/c his liver was so enlarged that it looked like a football sticking out from under his ribs. He was still in denial that he had a drinking problem and was under the impression that he would get to leave the institution soon. Sadly, he died there. It's a slow painful way to die.

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Last Oct he was diagnosed with alcoholic hepatitis and cirrhosis then Decembers decompensated liver.

He has all these symptoms part from his colouring he s more grey in colour than yellow.

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I think once the disease is at the very latest stages, people start turning grey. I noticed a couple of guys at the liver clinic with a waxy greyish skin. I dread to think what they were/are going through.

I read your blog by the way. It's a hard read... I commend you for being so strong all these years. It's certainly not something I could ever put up with.

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Hi hunni, im so sorry to hear ur news, I 2 was married to an alcohol dependent pain in the butt, but to b frank I think what uve done for him is well beyond what any1 should have to cope with and ur daughter will c that, I personally think hes made his choice but its time to start taking care of u, uve been through so much and I really think ur an amazing person for still trying to help, I wish both u and ur daughter all the best for the future with lots of fun xx

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Hi..yes i agree with Andiball and Laura...Unfortunately for your ex ..but it's his decision to walk the path he's taken...You should think of yourself and your daughter....poor girl...The worry and strain can and will wear you out....then what will your daughter do ??...

Syau strong as you are

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Hi hunni. His doctor will know, they can check hes not drinking during his blood tests, my doctor did them on my bloods cause for my degree of damage he wanted to check I didnt, I think its like the diabetic test that can give a blood sugar reading for a 3 month period, so u cant get away with any thing. I also have been told that an alcoholic has to be sober for a year b4 the doctor will even consider the transplant root,

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Yes they told us last year that he had to be alcohol free for 12 months from his last drink which he said was August, but that’s out the window

He’s not had his bloods done since January his consultant gave him blood form to get them done on Tuesday but it was busy and he was vomiting so came straight home, he’s not been yet

I messaged before to see if he wants me to take him get them done but said he’s in too much pain so until he gets them done we won’t know.

I’m hoping that his bloods will show because surely too god their gonna be through the roof. Thinking back last year when he was back in Dec his levels where extremely high and they said it didn’t make sense as he was adamant he wasn’t drinking obvisouly was x

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Hi married-sorry you’re going through this. Unless your ex sees the light I’m afraid it’s curtains. Happened to a friend of mine a couple of years ago-he was in his late 50s developed cirrhosis through alcohol and continued to drink-went onto jaundice which he’d for years and then the liver failed. Even then he survived the initial failure only to succumb to complications. He lasted 5 years in all which seems to be par for the course. The only way your ex stands a chance is if he stops right now-you have my sympathies- you’ve done as much as you can. Best

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Swelling yes is due to liber failure my brothers belly and legs and feet would swell

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He doesn’t have to be yellow to be suffering my partner who recently died after spending 3 months in hospital with alcoholic liver disease also spent more time grey rather than yellow this is down to the lack of blood being given to the skin as with the liver not working the blood is needed elsewhere. Everything you say brings back so many horrible memories. He has all the symptoms. I wish you all the luck in the world stay strong and remember to look after you and your daughter xx

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Sorry too hear about the loss of your partner. How are you doing? I don’t know what I’ll feel when that day comes x

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Getting there slowly, keeping busy. All I can say for when that time does come is be prepared to go through every emotion imaginable. Utter sadness and loss to relief and everything else in between! X

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This lady just needed support and advice...Never asked for sympathy and has got NO reason to feel guilty! Are you seriously suggesting she wants her ex husband to die to end her suffering? Thats what it sounds like! maybe you should have stuck to one of your previous posts and stayed away from this forum. We try and support each other on here,even if we might not always agree on certain actions/comments and if you've nothing supportive or constructive to add don't comment at all! I find your previous comment horrendous and I have reported it.

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Not sure what’s happened but I can’t see any posts from metecol what has been said? Hope your ok Stacie? Xx

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Hi marriedtoanaddict im very well thankyou, hope you are too? I think he or maybe blt removed his comment as I reported it, it wasnt helpful to you or anyone. I'm sorry for hijacking your thread, i probably shouldn't have risen to it but I did, and I'm glad I did really as the comment is in the bin where it belonged! Wishing you all the best, Stacie. Xxxx

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You don’t need too apologise Stacie. Thank you for saying how you felt, I’ve only seen the first four lines on my email notification where it says their not sure if I’m looking for sympathy! I actually laughed when I read it as they clearly haven’t read my blog or if they have not thorough just skimmed through it. Their reading it through an addicts eyes so maybe some of what I’ve wrote has hit many nerves with them on how they have acted throughout their addiction and illness.

Hope your ok have a lovely Sunday xx

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Yeah, you are probably right there...addiction is not something I know a massive amount about, hence why I never commented before. Everyone is entitled to an opinion/point of view but as you saw from the first four lines..this wasn't just an opinion. Same to you, have a lovely sunday. Xxxx

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No I know Lovely I’m just about too leave them a comment x

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I was not able too read your full post as it seems too be deleted.

However i did get too see the first few lines on my email notification.

I’ve just read your bio before commenting and firstly I have too say no two addicts are the same as no two people are the same

From what you have written you have lived a completely different life too my situation, I read it as you enjoyed life and partying hard not that you where drinking all day everyday along with abusing drugs. Like I say I can only go by what you have put.

I’m not sure if you have read my blog In detail or just skimmed it, as I do not at any point wish him dead. I pray for this nightmare too end so he is free from his demons and pain he is suffering and me and my children too.

I can assure you I’m not looking for sympathy if that was the case I would be open on social media this is no sob story this is real life my life. Unless you are walking in my shoes you’ll never understand what it is like because our stories are different.

There is a lot I’ve not written and no doubt will add along the way, not because I don’t want too but because so much has happened you bury it away and forget, when it resurfaces then I will speak about it.

Then you are reading it through an addicts eyes, from what I’ve learnt and experienced they don’t like the truth they don’t want too hear the pain they’ve caused or suffering they can’t handle it, but expect us too.

It took a lot too walk away 3 years ago I thought I was free, how wrong was I because we have a young daughter who I protect with my life.

I know when she is older she will understand why I left her dad and why I stopped her from staying over and seeing him for months at a time but right now she’s 7 years old. I’m making the best of the situation with what I’ve got. As much as I don’t want her near him when he is drinking I know time is not on our side and I cannot deprive her or him of quality time together when he was having good days.

If I wanted him dead as you say, I would have walked away last Oct after finding him unconscious lay in his own body waste and celebrating it was over. I didn’t I tried one last failed attempt too save him, even the GP and consulats have thanked me and also say they don’t know how he is still here given the condition he was in.

At one point they gave him 48hrs too live it was at that point I contacted his close friends and family they didn’t believe me because I found messages on his phone saying I was the ex psycho wife and if I ever got in touch not too listen I had a hidden agenda too have him all to myself! He couldn’t be further away from the truth.

Reading that after everything I done I could have left him too it but i looked at my daughter and tried again one last chance too fix him, only I couldn’t because he chose not too.

I certainly don’t feel guilty far from it because I know I have done everything in my power too help him and given him more than enough chances. Most people would have give up after second chance .

The only part I feel I would feel not guilty but awful is the thought of him suffering one day and dying alone but I have no control.

Even Drs told me too step back as I can’t do anymore than I have, and that most people wouldn’t have done half of what I’ve done and gone through, especially with my own health issues but I have never spoke of them because it’s in the title it’s about being marriedtoanaddict , I have too say I have had hundreads of emails all from strangers with wishes of support, and how reading the blog has made them look at Addiction in a different light and see it as an illness too.

I’ve also had addicts message me and thank me for opening their eyes and seeing what impact they actually have had and are on their own families and that they are determined too beat it before it’s too late.

I never expected so many people too read my blog in 7 days, as I didn’t advertise it nor did I share on social media or friends. Apart from when I joined this forum this week.

I needed a way too vent and self counsel, I couldn’t write a diary due to my condition but I could type. As well as being selfish in doing the blog in helping me, my goal was and is too reach as many people as possible whether it’s loved ones in a similar position. Most importantly addicts if I can hit a chord with just one person who decides they are getting the help they need once and for all then that makes it all worth while, and far more significant that helping me.

I wish you well on your road too recovery and the future ahead.

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The post was deleted.

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Marriedtoanaddict,

It is very easy, like the actions of Stacie33 to report, when someone gives an honest opinion. Showing they have the power by just simply pressing that bottom. I deleted my post because I like to be civil.

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Hi everyone

Hope your all ok

I’ve been offline for a while trying too sort myself out as things have gotten worse trying too detach myself as best I can.

He received a letter from hospital on Thursday which reads following your recent bloods your liver levels are deranged, you are not jaundiced yet! I hope you are abstinence and not drinking any alcohol! I will see you at your procedure as planned

What would you make of that letter please? He has actually turned jaundice this week not heavily almost sallow skin x

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