Cirrhosis over time.: Hi, I’ve recently... - British Liver Trust

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Cirrhosis over time.

Hi, I’ve recently joined having been diagnosed with cirrhosis back in March 2021. I’ve not had a drink since then, my health has improved significantly and I feel a whole lot better. My bloods are now normal and my recent endoscopy showed 2 small grade 1 varicies with no red risks. At my recent check up my consultant was very happy with progress since my admission to hospital back in March. I can’t say I’m experienced at this, and have so many questions, but the most important for me is does it stay like this as time goes on or will I deteriorate? I know alcohol consumption is a big factor, and I’m not planning on touching the stuff again, but I’m feeling so much better than I was even a year ago that I’m worrying that things will go wrong. Is this normal?

22 Replies

Hi There

I can only speak on what I have, I was diagnosed with cirrhosis October 17 and I've gone from severely decompensated to well compensated i am now totally T Total I eat well and walk daily, my bloods are all normal and I have had no other liver issues ( cross fingers) my consultant says there's every chance I'll live to a reasonable age, I take it daily and thank my lucky stars I'm still here, we are all different I wish you well on your journey it may help if you write down any questions for your next consultation, I know when I was diagnosed I was very fearful but in time it becomes part of you and you just get on with life ☺️

in reply to bintcliffe

Thanks for your reply. That’s good to know. It’s still new to me and am hoping that with time I’ll relax a bit. I was terrified but even after 6 months am getting some confidence back. My consultant is great, but the time goes so quickly in consultations that I don’t manage to ask everything. I’ve found this forum invaluable.

CHanse profile image
CHanse in reply to bintcliffe

Hi bintcliffeI’m so pleased to hear that you are doing well. I was also surprised that you said that your decompensated Liver disease is now classed as compensated. It gives me a bit of hope for my freind who has decompensated liver disease. He has only been abstinent for 10 months so hopefully if he continues things can improve.

bintcliffe profile image
bintcliffe in reply to CHanse

Hi There, when I went in hospital I had triple organ failure and put into a coma with basically no chance of surviving but I'm still here I've obviously got some ailments as I also had a stroke at the same time I say never give up keep moving forward day by day 💗💗

ciroze_05 profile image
ciroze_05 in reply to bintcliffe

you survived your 1 year, im so happy for you! i wish i can go through that too. was diagnosed decompensated liver last august. still feeling weak. i have my blood test every week and it was all normal

Well done for staying off the alcohol that’s the best thing you can do . I was diagnosed with decompensated liver cirrhosis in 2016 and was really ill . then giving up alcohol in 6 months my liver was compensated I’ve been doing just fine with 6 monthly scans and only this year had varices . Life has been so much better for not drinking and im so much healthier, I’m sure the same will go for you to so just enjoy feeling well and make sure you keep any appointments for scans and blood tests that you will probably have every 6 months, I think we are lucky in a way as lots of people have cirrhosis and don’t know til it’s far to late where we have constant monitoring and maintenance as u call it . Best of wishes keep up the great work x

💗💗

in reply to Lilliebell

Thanks for your reply. It’s good to know.

I've been up and down. A lengthy period of recovery - or recovery as much as possible - and then feeling pretty well for a while, then not so good, then OK etc. Part of it for me (just me) is I believe if I'm not as disciplined I should be with sugar and to a lesser extent salt it'll have a negative effect on me in lots of ways. Skin, hair, funny smells, bleeding gums and so on. Nothing as bad as before and during my time in hospital though.

I've unfortunately (and fortunately) learnt with cirrhosis to expect the unexpected. Taking into account that the liver has 500 + functions so when it's damaged lots of parts of the body can react. Obviously I'm only talking about myself and in no way wanting to alarm you or put ideas into your head.

More positively my life and mental health are so much better now. I spent a month in West Africa in early 2020 where my wife was born which I'd never have done if I'd continued to drink and I'm also, at 49, about to take my driving test!

Hi YewTree123. Well done for quitting alcohol when you were diagnosed!!

Those on here know my story. Short version here…😁

I was diagnosed in June 2020 with cirrhosis. Didn’t drink for 7 weeks. Then my son almost went blind in one eye. As I’m divorced, I took care of everything for him including a hospital procedure. I drank solid everyday for 3 months. I quit end of Dec 2020. Had my 6 month check up and blood work first week of Feb 2021. Doctors couldn’t believe how good my blood work and LFT were! I told them the supplements I was taking. They said, “keep taking them”.

Then a couple weeks later (still Feb), my son almost died!! He was with me…I saw everything including rushing him to the hospital. I drank again for 3 months straight and didn’t take my supplements everyday.

Knowing I had another 6 month check up June, I quit drinking and I started on the supplements again and added a pure alkaline powder mix.

My doctors were blown away by my blood work!! They said they were better than in February!

I told them what happened with my son and that I drank everyday for 90 days.

They said, “stay on what you’re taking and don’t drink!”

I haven’t drank since. It’s been almost 4 months.

One thing about alcoholic cirrhosis is that if you stop the cause (alcohol) you stop the progression.

Eat well…exercise and drink plenty of water.

If you’re wondering…yes…this is the short version. 😂

All the best. Cheers. Dan

tracyliz profile image
tracyliz in reply to Downunda

Hi Dan

You're the man....you need to tell me what these supplements are please 😁

Trust5 profile image
Trust5Administrator in reply to tracyliz

The post regarding supplements has been deleted. Potentially the supplements could be harmful - what is OK for one person may not be for someone else. We would always advise extreme caution when it comes to non prescribed supplements.

britishlivertrust.org.uk/in...

tracyliz profile image
tracyliz in reply to Trust5

Thanks , totally understandable, I was unsure about them so better to be safe.

Hi Yew TreeI was admitted to hospital with bleeding varices in 2013 and was told I wouldn't survive the night as I was in such a dreadful state,I had ascites too and had litres drained from me. I have decompensated cirrhosis but my specialist says it's a little compensated so not sure what that means. I haven't touched alcohol but I do eat far too much sugar which I didn't when I was drinking, as I was getting all my sugar from the 3 daily bottles of wine.

My bloods are normal and have been for ages and yes I sometimes wonder if I could have a glass of 🍷 wine, you know, just one. Back in hospital 8 years ago the top specialist told me that, in years to come, when you feel so much better, that you still can never have another drink and that stays in my head fortunately.

I forget that I have anything wrong with me and at age 62 I work full time and I'm on my feet all day and doing about 12-15 k steps but I do feel tired out when I get home.

In Feb this year I was diagnosed with bowel cancer and had surgery to remove a tumour, it was successful and I didn't need any chemotherapy or further treatment but the CT scan did alert them to the fact that my liver was small but nobody seemed unduly worried and I'll be monitored for cancer over the next 4.5 years........so I'm just saying that I think you can have a very normal and long life but don't assume everything is down to your liver and keep awareness of other health issues. Thanks for this post as it has reminded me how lucky I am and that I do need to make an effort to quit sugar and eat more healthily. The major thing is to realise that you can never drink again.

When I get old enough for my daughters to be packing me off to a care home I intend to book a cruise 🛳 have a lovely bottle of wine and jump overboard 😁

LeverHead profile image
LeverHead in reply to tracyliz

More power to you but....leave the alcohol alone. Sincerely. Weird that a doctor would tell you that you can have even a glass of wine. Once you have cirrhosis, you have it forever. The only thing we can do is stopping the insult (be it alcohol, hepatitis or whatever) to the organ and manage to stop (or slow) the progress. Alcohol is THE FIRST thing you'll have to absolutely avoid for the rest of your life once you have liver cirrhosis. We're blessed to be alive already. That should be more than enough. Bless you and wish you the best.

I sometimes check up on the board just to have a browse as my mum dies from decompensated liver disease and HE almost a year ago now.

It sounds like you’re doing absolutely brilliantly. I think I understand about your concern - it’s so important to not ‘relax’ and think one won’t hurt and what not. Just keep up the great job you’re doing and keep seeking support from others. There are plenty of people who can offer help and advice.

Be proud 😌

Trust1 profile image
Trust1Administrator

Hi and welcome,

Congratulations on your sobriety.

You may find our information on Cirrhosis useful to read;

britishlivertrust.org.uk/in...

If you are in the UK, we also have a nurse helpline open Mon to Fri 10am to 3pm on 0800 652 7330 if you would like to have a supportive chat.

HiWe are probably experiencing the same stages and outcomes of our mutual journey so here are my thoughts that I can share.

Having had the positive news that you have, I asked my cheerful consultant (!) what this meant for my life expectancy. He told me it would be pretty normal and that "something else will probably kill you first. You are Scottish so something will get you!".

Taking the positive from that, like you I know that I am doing everything I can to stay healthy. No alcohol and very cautious consumption of salt. Past that, I don't over think it, I don't over burden myself with negative "what ifs" and push on with life. If that "something else " crops up, I'll deal with that the same way. I'm focusing on living and trying to see it as a blessing my liver disease has actually given me a new determination.

Whether either of us gets better still or worse will be what it is. The main thing is, you are doing your part.

That's either helpful or 5 minutes of your life you won't get back from reading this!

tracyliz profile image
tracyliz in reply to bcsurfer

It was very helpful, thank you 😎

It was very helpful. Thank you. So much has happened this year that I feel 5 years has been condensed into 1! As you say I’ve come through it. As my mum used to say...what doesn’t kill you makes you stronger.

Hi den.😀It's hard to just stop alcohol.

I was first diagnosed with alcoholic hepatitis liver disease 10 years ago.

It literally scared the living daylights out of me. I went around promising to everyone ' that I would never have a drink again.

1 year later I felt fantastic all my results were normal.

Me being me, why not I'll have a drink with the lads (I'm indestructible). 4 years later I'm a full blown alcoholic, not just social drinking but wine and spirits at home.

I wasn't feeling well at all (not going into detail) and diagnosed with compensated cirrhosis, stage 1 with 60% scare tissue.

My advice was to stop drinking immediately and then we will take a look at your diet. You will die if you carry on.

1 year later the same indestructible me, feeling fine looking good and results were unbelievable.

I fell off the wagon again (I'm a addict, I am addicted to alcohol) and everything felt different this time.

After years of giving the ball a good old kick my liver turned around and gave me one almighty kick back (it hurts, it really hurts, IT KILLS)

Low and behold I'm not indestructible , I have decompensated cirrhosis stage 4... 1 to 3 years to live.

I found it hard to stop drinking and the only way for me to realise that there is more to life than drinking was being told that you are dying.

I'm currently on the transplant list and had to sign a no alcohol for ever document.

All I'm saying is don't think you will be alright when diagnosed with cirrhosis.

Please don't go down that path I did (I have spared you from all the painful, humiliation, sleepless nights, medications dignity and depression parts from my liver history) and stay strong.

I wish you all the look in the world.

P.S.

If alcohol and covid were accessible to throttle, I would be in jail for murder....😃

Luck......😀

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