Decompensated liver: I was diagnosed... - British Liver Trust

British Liver Trust

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Decompensated liver

deanw41 profile image
14 Replies

I was diagnosed with decompensated liver disease in February this year after 20 years of alcoholism. I had developed ascites and was admitted to hospital with liver failure. I was told 50% of my liver was scarred, but I had caught it in time,my prescription was abstinence. I freaked out,carried on drinking for a month. Meanwhile waiting for the fluid to be drained,I couldn’t eat and weighed in at 7st(I’m 5’8 male) they drained 10 litres from my stomach. A moment of clarity and off I went to rehab were I started my rehabilitation process,eating and exercising. Through AA,the 12 step program and sheer grit and determination I’m fighting this fucking disease head on,and I’m 6 months sober. Strangely I’m the fittest I’ve ever been,training hard,muscles I’ve never had,skin is glowing,eyes are bright,mentally sharp. Off the water pills as it was causing gynoclamastia,no return of fluid. Endoscopy showed one small varcie,bacteria for ulcers negative,no ulcers. She said suggests to me you stopped drinking in time. Bloods show well preserved liver function and my consultant said my scan showed things are improving. I take a blood pressure tablets to slow the blood flow. I’ve started college to do a diploma in counselling with a view to work in addiction to help other people like me. But here is the problem,through lockdown I’ve spent to much time on goggle,Ive worked out Im dieing,Nothing is worth doing because I’ll be dead soon,constant anxiety and impending doom,no doctor has mentioned death,.life expectancy or transplant,just do not drink. I feel so ungrateful because I know there are people worst off,I can’t seem to shift this mood. Any ideas? I would be volunteering in a charity shop,helping others but can’t do anything cause if this Covid shit....

14 Replies
lizzybeebee2003 profile image

Oh Dean, what you're going through sounds awful. Lockdown is making everyone's anxiety so much worse. It sounds like you've done SO well. You're feeling and looking well and no-one has said you're dying. Like you say, you've been reading far too much Google. I'm guilty of the same and I go to bed at night feeling so anxious after reading stuff. Please try not to read stuff on the net. Concentrate on things that make you feel good. Maybe you could volunteer somewhere giving people support online. There are so many organizations doing this at the moment. It would keep you busy, and helping others is amazing for mental health. Have you tried the headspace app? Really easy to use mindfulness app. Good luck. You deserve to feel better because you've been through so much and worked so hard to get better. Keep positive 😊

deanw41 profile image
deanw41 in reply to lizzybeebee2003

Thank you for kind words. Yes I think we are all feeling a bit on edge,everything is so strange isn’t. Googling has stopped,ill just stay on here,the Internet sends you to all places in your head lol. Stay strong too😊

Hillclimber72 profile image

Hi mate massive well done you had the call to arms and you answered it I’m proud of you brother . You could simply start by supporting people that join the Forum. Some are scared , googled way too much and just need an arm of experience wrapping around them. Go save someone!!

Laura009 profile image

Oh Dean you really have done amazingly well many congratulations on turning you life around. It is perfectly possible to live on for many years with liver disease when it's properly managed as you are obviously doing. Yes stay off google. The US sites are the worst for making you believe you are about to fall off your perch ! Lizzies advice is spot on .... keep yourself busy, volunteer wherever possible and keep smiling about all you have achieved so far and plan more goals for when things start to return to normal.Take care. Stay well.

Best wishes


Samqdj4 profile image

Hi dean. I could have almost.written your post my self.

I just wanted to say a huge huge huge well done!!! Hats off to you. What youve do e has shown grit and sheer determination and extreme courage. I know its not easy.

And you my friend. Are not, dying. You ARE living!! You are waki g up every morni g woth fore in your belly and even though some days its a humongous struggle, you are getting.out of bed, putting one foot in front of the other and you following your chosen path of life. I inderstand what the doctors have or should i say in your case have not. Said, is scaring you. Again, im in the same boat. However the reality is, we are are dying fro..the.moment we are born. Some very sadly way too soon, sheer accidents and long term illness. You on the other hand. Have been given an amazing opportunity of a second chance... use it.

Stay off google (i ask my cousin to be my googler, and break.things down to me kindly if needs be haha) and continue.on this.path that you have chosen. No body knows what tomorrow brings. Have a little faith. Youve worked with what you have been given. And the age old "no news is good news"

As blunt as this sounds. You were given a choice to live or die, you were lucky. Take your choice and go do it.

I wish you all the best in your recovery and you know. You made someone smile today. You are an inspiration and im proud of you! And stay off blooming google. Take care x

deanw41 profile image
deanw41 in reply to Samqdj4


Thank you so much,I’m beaming with happiness and smiling ear to ear. You have made my day!! I needed to hear that,we all know how hard it is out there,but we must stay strong! Your kinds words meaning everything!! I will continue to fight and live my life to the ful,and you to also!! Stay in contact let’s all stay strong together!!!!! 🙏xx

Samqdj4 profile image
Samqdj4 in reply to deanw41

Yesssss!!!! Weve got this! Its amazing how far a bit of positivity goes. They do say laughter is the best medicine, so remember to do lots of it. You take care and please stay in touch x

hun64_D0chIk profile image

Dean you are an inspiration. Same story, alcohol, depression, ascites, small varices in the oesophagus.

If you’re interested, try Russell Brand’s book Recovery. It’ll make you laugh and cry. He talks about the 12 step recovery, but hey, you might have read it already!

The internet, as everyone has said, forget it. Ask your GP and if they don’t know ask the liver specialist or the hepatolgy clinical nurse specialist to answer any questions. There is also a lot of information on the British Liver Trust website.

I was also told that if I felt very anxious that I could call the Samaritans just for an immediate response on the phone. Post to us here on the forum and we’ll give you support.

Lastly, put a sticky note in a prominent place and write on it, I want to be a Counsellor. That is one of your goals to become one because you want to help people too.


deanw41 profile image
deanw41 in reply to hun64_D0chIk

Thank you so much,your words mean a lot.🙂

Tommy62 profile image

I'm in the same boat as yourself I was told I was borderline cirrhosis in June the problem is they should have told me 2 years ago and they somehow missed it only I was up in April this year for an ultrasound that's how it was caught on when they sent the results to the doc in charge got a phone just to tell me I need to stop drinking because I was borderline cirrhosis I said and your telling me now 2 years later I felt sick and he says I will get another scan in 6 months that would be now December and I still haven't heard a thing I googled to it's the worse thing I could have done I've even taken anxiety attacks over it and even went and paid for my funeral got bloods done lots of them got results yesterday all came back normal and satisfactory my LFT came back 76 the doctor told me I'm doing well my LFT use to be 700 to 900 so its improved massively but it's in my head morning noon and night well I hope you can get sorted soon I'm trying to take the positives I'm still here and so are you it's a bonus I haven't had a drink in 5 months that's a miracle in itself I've been drinking near 7 days a week for over 40 years and I know if I hadn't of stopped this time I would be dead now Goodluck take care and keep positive and fighting 👍

dikybird profile image

Hi, I have a similar problem to yours,may I ask what symptoms you had to get decompensated diagnosis, I haven't been diagnosed yet but I am Googling this myself and all says my symptoms are decompensated and I'm going to die

deanw41 profile image

Stop googling!! Well I had ascites,and took myself to A&E and was admitted and diagnosed the next day. Seek medical attention. Take care

Muffie10 profile image

How are you Dean? I was following up from the previous posts and just wondered how you are doing. I am hoping you are doing very well and mentally healthy too.

deanw41 profile image
deanw41 in reply to Muffie10

Hello Muffie10,

Very well thank you,just hit two years sober!! How are you doing?

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