Hi, I am new to this site. My husband (age 42) was admitted to the hospital in February, as his blood results showed a very high bilirubin count and high CRP. He was yellow and also he had a distended abdomen. However, a day later he was back at home with some antibiotics and laxatives. Since discharge, his health was deteriorating with each day. They sent him to have a CT scan, which confirmed Cirrhosis. His liver was quite large though and on the Child-Pugh scale was given B. The doctors asked him to stop drinking the alcohol and have a healthy diet and hopefully, he will recover. As for the alcohol, I hardly ever seen him drunk, but he consumed alcohol every day- 2-3 beers. I never thought he is an alcoholic, as he could stop any time and had no withdrawal symptoms. After he returned from the hospital, I put him on a strict plant-based, low-sodium diet, with zero alcohol, but soon he refused food and he would sleep 15-20h a day, and started behaving oddly. Each day passed, and I was getting more worried about his behaviour. Once he started having hallucinations, we went to A&E again. This time I stayed with him, as he was very confused. I was told that he has acute liver failure and also his kidneys are not functioning as they should. He was catheterised and was given some antibiotics to clear up a mild infection (potentially from ascites). Ultrasound showed a small amount of fluid in the abdomen and the first signs of oedema.
Once he was admitted, I hoped that he will stay a week tops and then he will be discharged. On contrary, his vitals changed every day. Doctors said that due to liver failure, his kidneys also failed, and he needs hemofiltration. On top of it, he developed pneumonia and has fluid in the lungs. Because of the toxin build-up, he became agitated and confused and was in danger to himself and the hospital staff. There was no other option than to sedate him, with a risk that his body will not withstand another invasive treatment. He is now intubated and ventilated. Doctors confirmed he can no longer have a transplant in his condition (anyway, he would probably not get one as he is an alcoholic) unless kidneys will resume their normal function and the lungs will also clear up. He is in ITU and doctors said he may stay there for weeks.
Has anyone in this forum had a similar experience and survived? I am on my own with two little girls and no family support. I just need to know if I have to prepare myself for the worst.
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KasiaC
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Well, I think because of his youth(he's fairly young to have cirrhosis) it is possible he can improve. I have heard stories of people in very poor liver condition that have come out of it. If he does come out of it he will need to take meticulous care of himself something which many alcoholics are not willing to do. They really have trouble giving up booze. In my opinion 3 drinks a day doesn't seem all that bad but I have seen and heard doctors saying any amount over 2 a day for a man, can damage your liver. This could even be too much for someone with a delicate liver. There's no way to know if you're one of them until it's too late I guess. I am pretty sure he can get a liver transplant if he stays off the booze for 6 months.The fact he's on a ventilator makes me feel like he is still in the danger zone.
There is still a lot of hope. He is quite young and younger bodies can and want to get better.
Sending hugs and prayers.
Pam
Hi Kasia. I have been in the exact same situation as you are. My husband was drinking more than yours but was in ICU for 10 days with liver failure, kidney failure and bronco pneumonia. He had only given up drinking 3 months earlier so was unable to have the double transplant which he needed. Unfortunately despite the great care and treatment he received, his life couldn't be saved. I hope your family have a better outcome, my thoughts and best wishes are with you and your family .... I'm afraid all you can do at this stage is hope for the best but prepare for the worst.Laura 💕
Hello. I don't have any advice I'm afraid, but just wanted to say I'm so sorry for what you're going through. I'm very shocked that 2-3 drinks a day has caused this, especially at his age. Have they done a biopsy, as I thought they couldn't determine the cause of liver damage without it? Could something like medication have contributed? I have seen that lots of alcoholics (though I would really query this term for your Husband) are accepted onto the transplant list, if they can stay sober for 6 months and sign to lifetime sobriety. I really hope you get to this stage.
Hi, just to add to my original post. I had an update from a doctor this evening. Apparently all the treatments are not working for him and now even lungs are failing and they had to crank up the respirator to max pressure. He asked me to prepare for the worse outcome. At the same time they belive that apart from the alcohol and bad diet there has to be another aggressor which is damaging his organs, but they cant pinpoint what it might be. They did all the possible tests and they are running out of options. Is it possible it is down to his genetic make up?They said that next 48 hours are critical and already asked me to come on Friday to see him and to talk to the doctors about whats ahead of us. It is scary time, and not sure how to prepare myself for this.
Hi Kasia, have they considered hepatopulmonary syndrome? It is an effect of liver failure but results in very low oxygen levels in blood which damages all organs.
Hi KasiaCI could tell you my story I’m an alcoholic and not drunk for over 17 years I have been in ICU 4 times over different things but never had pneumonia, my wife thought she new how much I drank I’m ashamed to say she had no idea an alcoholic can drink very secretive but my thoughts are with you and your children I will be hopping for the best but I feel you should probably prepare for the worst. Once again All my best wishes and thoughts to you all ❤️.
Stay Safe All
Dogbot 🐶🌈
Thinking of you and sending you love and strength at this difficult time. ❤️❤️❤️
I just have to say I really really feel for you. I won’t give you any anecdotes of mine and my journey but you must have had an awful time. Contact al anon for some support if you haven’t already.
But one thing I have realised is how medicine really is not black and white and the body can come back from the brink. Not always, it’s not a given, but until it’s over you must have hope. It won’t jinx things. Xx
Hello! Thinking of you going through such a horrific time alone. Similar to you ,my husband is only 41, we have a young family and have at times felt incredibly isolated recently.My husband has had a close shave, not realising how sick he was until he nearly lost his life. Likewise, alcohol was initially thought to be the cause, despite him never having any addiction issues or even having enough to get drunk.
Its thought to be highly likely that the use of prescribed medication (naproxin and alopurinol) for years have been a massive contributor. Also, his genetic make up - his Dad is in end stage of Idiopathic Pulmonary Fibrosis (scarring of lungs) - so he likely just more likely to suffer with scar tissue problems than other fellow humans.
They're now doing further tests as they think he may have Haemochromatosis. You can look this up on the BLT or NHS website. I used to ask and ask if there was any link with his blood/joint/"gout" problems, and its looking like my instincts were correct.
I've always found with my husbands consultant and Drs, that their main focus is saving him, and all those questions about causes they focus on as time goes on.
I really feel for you, feeling like your in the dark as to why this all happened. Its not a nice thing to face, doubting your husband (did he drink secretly etc) especially when he's so sick and you feel the need to support and be there for him. I would just concentrate on getting through this for now and hopefully you will find your answers in time. Lots of love to you all
Hi, I feel like I've just read my own life right now. My husband in in a high dependancy unit with liver and kidney failure, ascites and is very sleepy and confused. His billirubin is 540, he has very low platelets and all sorts of complications..... Do you think he will be ok as we have a huge mortgage and a two year old daughter?
I feel for you and your husband. I had liver failure and was a golden colour with stage 4 kidney injury. I also had ascites. The infection probably caused the rest of your husband's illnesses and complications. I was on antibiotics and fed around 800 ml of albumin, my kidneys slowly recovered but my liver was and is at end stage and waiting a transplant.I got through the worst part and I am the same age. My age definitely contributed.
I rooting for you and I'm wishing you all the best. If he ever needs to talk I'll be here.
hi, so sorry to hear this sad news. I am having the same issues with my Mum. I never thought she had a problem with drink. She would have a few glasses of wine every tea time but so do a lot of other people I know. So for her to be so ill now from an alcohol related illness is sad and i wish I'd have done something to stop it. Thinking of you xxx
Thank you all for your kind words. I was logged off for some time as it was really hard for me to re-live the past. Since my last post a lot has changed and I had to learn how to live my life again. In my last update I mentioned that I was going to see the doctors while my husband was sedated. It was a horrible experience to see him like that- unconscious. But, doctors were giving me hope. Couple of days later I was told that his vitals are much better and he will be woken up. After that, he was moved to the renal ward as his kidneys were still not working properly. Since then he was on different regimens to help the kidneys and liver. On Easter day I was called and doctor told me that his survival rate jumped up to 70% . I was extatic but petrified what is ahead of me. He started physio as he lost 80% of muscle mass. He was off the feeding tube too. But we were told that unfortunately his kidneys suffered and he will require dialysis for a very long time. While I was happy to see him recovering I was scared how I am going to manage with all the changes, becoming sole provider, looking after my girls and being full time carer. On his birthday, week after Easter I was asked to see him. He looked awful. Skinny, yellow and old. It wasn't my husband. I cried a lot. It is not how I imagined celebrating his birthday. Two days later I was called out of the blue to rush to the hospital. They couldn't stop the bleeding after one of the procedures and his lungs developed the clots but they could t give him blood thinners because of the blood loss. He was bleeding out. On top of that he got sepsis. They gave him hours to live. I couldn't understand what is going on. He looked at me and asked me to take him home so he can see his daughters. He begged. I cried...i couldn't help him. With his last breath he asked me to promise him he will die at home. Next morning he died in a hospital 4 days after his 43 birthday. So this is my very sad story. I still do not understand what happened, friends and family thought I am joking when I said he died. Everyone was in shock I still am. It's been now 7 months since his death and somehow I can't believe he is not here with us. I know that everyone in this forum is looking for a stories filled with hope and positive outcomes (I was one), and I am sorry I couldn't offer you that. All the best with your own fights whether you are a patient or a carer. You need all the strength possible to fight this. My thoughts and prayers are with you all.
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