decompensated cirrhosis

[Kingbilly3]

hi I was diagnosed with decompensated cirrhosis in march , I have quit alcohol since but and had scan last month, my next appointment is 6 month time, is this Normal just to carry on as if nothing is wrong, I asked about liver transplant and was told a would have passed before one is available so basically do I have less than 4 year to live!!?

[AyrshireK]

When you say you were diagnosed with decompensated cirrhosis back in March - what symptoms did you have then compared to how you are now? Normal protocol for monitoring cirrhosis is 6 monthly scans, 6 monthly bloods and hopefully a consultation to discuss matters plus a regular endoscopy to check for signs of varices or other gastro damage due to portal hypertension.

It's great that you have quit alcohol and that is imperative going forwards. When alcohol is the reason for liver damage then a proven period of abstinence is required before movement on towards transplant assessment. It's possible that with continued abstinence your liver can stabilize and negate the need for transplant.

My hubbies consultant has always reported that he has patients on his books who have had cirrhosis for 20+ years an are no where near deaths door nor transplant needy.

My hubby has non-alcohol related auto immune cirrhosis, he was diagnosed in April 2012, listed for transplant in 2014 but delisted after 10 months after his situation improved to a degree. These past 8 years he's lived his life to the max, doing loads of walking and even cycling. Sadly, he's off for another transplant assessment this next month as he has started to decline again with hepatic encephalopathy issues.

If you feel you need your appointment brought forward or have more symptoms then request for your appointment to be expedited.

If you've any particular queries or need support with any advice from folks who have been through it then ask away and we'll see how we can help.

Katie

[Kingbilly3 in reply to AyrshireK]

Thankyou, I am sorry to hear about your husband, I took ill in march had acitis , swollen legs and feet, yellow eyes and I was bright yellow, was told if I had kept drinking I would have died within a few months, I lost 3 stone in 6 weeks and was so weak and frail, my jaundice has went and fluid as my water tablets work great but my memory is shocking and I do rally daft things like putting shampoo on toothbrush , my legs kill and fingers they say muscle waste, and I am so tired all the time, it takes me twice as long to do anything , other than that am feeling ok and my scan showed my liver has not got worse, but I am one of these who like to plan ahead and if I have less than 4 year I wanna try my best to make the most on my good days!

[AyrshireK in reply to Kingbilly3]

Do absolutely everything to look after your liver and it may well improve to a degree, my hubby has had 8 years where we've managed to go travelling across the UK with our caravan etc. It's only this year (in fact the last few months) where things have gone downhill. It sounds like your liver is recompensating which is great news. There is no one who can say you only have 4 years to live - these so called life expectency guides are only where the patient has done nothing to help themselves. If you look after your liver (particularly where alcohol has been the cause) you stand a good chance of improving and living a long life.

Someone one here recently quoted Confucious with a good saying which encompasses the fact that life is for living “We have two lives, and the second begins when we realize we only have one.” (My hubbies mantra even before he knew he was ill was that life is not a dress rehearsal, you only get one kick at the ball so make the most of it!)

Are you on any treatment for Hepatic Encephalopathy? By which I mean Lactulose or Rifaximin? The slowness of movement, memory issues and 'daft thing's' can be HE related so you need to be getting rid of the toxins out of your body - going to the loo and moving your bowel 2-4 times daily is essential - this is where the lactulose comes in - not just for it's laxative effect but by removing toxins too.

My hubby is so slow, he's only 62 but could pass for 90+ he just shuffles, mumbles when he speaks and his memory is terrible. This is all HE related. He had an acute episode which led to him being hospitalized in December. He is on lactulose, rifaximin and newly prescribed Hepa-Merz (Lola - L'ornithine L'aspartate) for his HE symptoms.

As regards, muscles wastage you need to be eating a carbohydrate and protein rich diet and I will ping you a wee PM with information which may help on that score. Eating protein can also help prevent ascites and doing some exercise will help to maintain/rebuild muscle mass.

It sounds to me like you could do with having your appointment brought forward to get some of these additional things looked at and/or treated.

Katie

[Kingbilly3 in reply to AyrshireK]

My appointment was yesterday and all they said was my liver is no better or no worse see you in 6 month! I take lactose which does help to a point but some days I feel like I don’t have a brain left! Don’t get me wrong the hospital was great when I took ill I had every test scan camera going then everything stopped in July until my scan where I got results yesterday , I feel like crap most days especially mornings it takes my hours to pull my self round, I just feel like a ticking time bomb waiting to explode,

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Kingbilly3

Here are the links to information about cirrhosis on our website, which you may find useful

britishlivertrust.org.uk/in... (including a suite of publications towards the bottom that are downloadable or can be posted)

britishlivertrust.org.uk/in...

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers). If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[juneblue]

Katie sounds like a wise individual. Good advice there. I’ll add. I was in the same boat as you. Once I came to terms with death I started living again. Been an up hill battle. I look at it this way. You can ether chose to fight or give into your situation. We can only speak for ourselves. I obviously quite alcohol but there was already so much damage that was only half the battle. Diet and low sodium was pretty easy. Exercise was the hard part. I was like you ie low energy no drive etc. I had to force myself to move and for months I had minimal effects; but slowly started to increase. Weight and strength increased. I no longer need naps in the middle of the day. I can walk 5 miles x 3 a week. Strong again. Gastroenterologist was amazed at last appt because I had looked like death the last time. I didn’t negotiate with myself about moving, I just did it. I almost died twice before getting better(not from the exercise, initially). Ask yourself would you rather live for 10 years or die for 30. I don’t know what you believe but my faith is solid. I’m going to a better place after this. I just have some unsettled business here. I’ll prey for you. God bless.

[Kingbilly3 in reply to juneblue]

Hi thanks so much for your reply, am trying so hard lately to get more motivated I have only gained 4lb since march but even that little bit makes me no longer luck like I have been dug up! May I asked when was it you were told you had same as me?

[juneblue in reply to Kingbilly3]

Approximately 18 months ago. I was decompensated. came out of it and became decompensated again. Shorter period of time than first. Some days it felt like I took 1 step forward then two backwards I guess I had to recoup. Haven’t been decompensated for approximately 8 months. I was diagnosed with rule out cirrhosis. I think I struggle a little bit from portal hypertension because slight ascites is only symptom. Gastroenterologist said that can get better. I did pray for you. Keep fighting!!

[Kingbilly3]

so did you go to compensated? I got told from specialist it’s very rare that happens, my worst symptoms are tiredness and the memory, my water tablets work a treat for ascites

[AyrshireK in reply to Kingbilly3]

It is not at all unusual for a liver to re-compensate providing it is given the chance to do so. Loads and loads of individuals on this site who have been at that stage and are now ticking along with well compensated livers. Some have been in ICU battling for their lives and have still bounced back.

Just do everything you can to look after your liver and you will give it chance to heal (to a degree).

Katie

[nfds in reply to AyrshireK]

I spent time in ICU with bleeding varacies and portal hypertension. They gave me 24 hours and told my partner to call friends and family to give them opportunity to say their goodbyes. I also also had jaundice and this was back in 2006 and my cirrhosis was confirmed in 2008 with a biopsy. I have good and bad days but live a relatively normal life working full time and enjoy walking my dogs. I do stick to the rules and haven't touched a single drop of alcohol since 2006 and ensure I have my 6 monthly check ups. I wish you all well, Nick.

[Kingbilly3 in reply to nfds]

Thankyou keep doing what your doing

[Trr1985 in reply to Kingbilly3]

I’m so sorry to read about what is happening to you. I hope that things improve and your doctor is a bit more informative going forward!

I am waiting on the results of my LFT at the moment. I’ve been drinking heavy for about 15 years or so. I’m overweight on top of being a heavy drinker so I’m expecting bad news.

I don’t have any jaundice, ascites or pain but I have had itching and lack of appetite.

Do you mind me asking how much it was you were drinking when you were drinking and how long for?

[Kingbilly3 in reply to Trr1985]

Hi sorry about your health as well , ask away! I was a heavy drinker for 7 year drinking 3 bottles of wine per day then last 3 year was about 5 bottles per day, totally disgusting but I have not drank for ten month now

[Trr1985 in reply to Kingbilly3]

Thank you.

I’ve been a drinker since I was in my early 20s, in my late 30s now. I did go through a period about 3 years ago where I didn’t have liver disease but the doctor warned me about my liver results. I stopped drinking totally for about 4 months back then and my liver function returned to normal. Unfortunately I went back to old habit of a 70cl bottle of spirits a day with the odd week long break, managed a month earlier this year and 2 weeks back in November.

I’m praying that due to the fact I got my liver back to normal a few years ago I don’t have cirrhosis but I won’t be shocked if I do.

That’s great you haven’t drank for 10 months now. I guess the most important thing is to stop the thing that has caused it to begin with. Really hope that things improve for you soon and that you manage to get some more information.

[Kingbilly3 in reply to Trr1985]

Well hopefully you don’t have cirrhosis, are you unwell? I sort of blame Covid for how my drinking got worse even when things got back to normal I still carried on drinking, no sympathy for my self I was told dec-22 I was borderline cirrhosis going by bloods and to quit then which I lasted till Xmas then boom started again juumped straight to decompensated by march, but I tell you what am a picture of health now compare to march I looked liked ad been dug up!!! Feel bit better, everyday is different either good or bad hopefully more good days soon

[Trr1985 in reply to Kingbilly3]

I wouldn’t say I’m unwell as such, I’ve not had any jaundice, ascites or sickness. I have had itching, trouble sleeping and loss of appetite though after quitting 10 days ago my appetite has returned a bit.

I get what you mean about Covid. Lockdown was so tedious and for me drinking helped with boredom. I’ve never been one who can just sit and relax, I’ve always needed alcohol to feel relaxed. When I think about the amount of money I’ve spent on alcohol and the damage it has done it is depressing.

That’s a real positive that you are much better than in March, 10 months sober will have done so much good for you and is a massive achievement.

[Kingbilly3 in reply to Trr1985]

Thankyou, oh yes them itches are awfull it should ease off soon normally takes couple of weeks , am same I loved a drink to relax, I split with my husband august he was sick of me being tired so I left so am more bored now but still managing to keep off the wine, when I was in hospital with fluid in legs and ankles they grew so big and were splitting open and itchy, they give me a cream called zero base you can buy it on Amazon or anywhere it’s really good better than anything av tried before when quitting drinking, it’s cheap as well , hopefully u will stop itching soon but I did used to itch years ago before cirrhosis when I kept off the drink so hopefully it’s just the toxins coming out your system and not cirrhosis 🙏

[Trr1985 in reply to Kingbilly3]

thanks for that, I’ll look that zero base up.

I’ve done some urine tests while I’ve been waiting on the bloods coming back and they’ve been fine (liver and kidneys) but they don’t check everything the LFTs do and aren’t as accurate.

I’ll let you know how I get on and please let me know how you are doing.

Out of interest are you from Northern Ireland? The username stands out! I’m originally from there myself but haven’t lived there for a number of years now.

[Kingbilly3 in reply to Trr1985]

Well all the best and I hope all goes well with your sobriety, no am not from Ireland but my rescue greyhound is 🤣

[Rshc]

it is not rare to go from decompensated to recompensated. Like you when my partner was diagnosed with alcohol related liver disease we were told a very bleak story that didn’t give us much hope. My partner gave up alcohol and very slowly his liver started to improve. He was listed for transplant for a few months but then as his bloods recovered he was suspended and then delisted. They now describe his bloods as all being within range. It definitely took time though, your liver needs a chance to recover. I know some people don’t want to know all the detail but we found it helped us by knowing the results of his blood tests so we could see for ourselves things were getting better.

[Kingbilly3 in reply to Rshc]

Thankyou how long did it take to recompensate? Oh I like to know everything about my illness, great news tho that he is on the mend

[Rshc in reply to Kingbilly3]

At the start the doctors said to him that if he didn’t recompensate within 3-6 months it’s unlikely to happen but it really took 1.5 years. At the start he was being drained 12 litres every 2 weeks and now he has no fluid anywhere and is not taking any diuretics. I have heard many many stories of people recompensating after a longer period of time than 3 months.

[Kingbilly3 in reply to Rshc]

It’s been 10 month since I found out and ten month since I quit drinking this week scan shows liver is no better no worse so am happy with that I suppose

[Rshc]

the scan may show a liver that had cirrhosis which my partner still has of course but it’s the bloods that will show how well your liver is functioning

[Kingbilly3 in reply to Rshc]

Bloods showed the same but least it’s not worse I suppose

[DaveQ67]

Hi,

I’m new to this sight and probably the least experienced in giving helpful info.

My situation is very similar. Diagnosed in June 23, decompensated with varices, jaundice and a small amount of ascites which did not require tablets.

The only thing I have had treatment wise was carvidilol and blood tests. Which have improved almost back to normal range, no scan etc yet.

I was given the same news, a few months left if I didn’t stop drinking, low sodium etc. I have been abstinent since finding out but have no idea about life span as there doesn’t seem to be any one size fits all answer. I was hoping to hope and seek for info if I could get 20+ years as I have 3 very young kids and I am angry I have done this to myself, robbing them off a dad and have fully committed to trying to do everything I can to make this happen.

I have been told my liver is now in a compensated state going by bloods and how I feel.

I put this down to exercise. Along with abstinence. To put you in the picture. I’m a 43 year old ex Fire fighter. Exercise has always been a huge part of life. When finding out my diagnosis I decided then to get fit gain. When I came out hospital I couldn’t walk properly, no balance, I couldn’t ride my bike or walk to a gym, that was my first goal. Once I could walked to the gym I done very light multi gym weights then added in some extremely easy cardio on a stationary bike. My knees and joints were in agony and I didn’t believe I would ever be able to exercise again. I took me about 4 months off persevering when my liver and body has began to respond and now almost 9 months from diagnosis I feel great and healthy. I honestly think exercising has helped me recover to feeling normal again.

Even if you can manage to swim a little and be patient and not expect immediate results. It can perhaps help the way exercise has helped me.

I’m yet to hear if all this is in vane ( maybe it is) as everything I’ve read suggests a pretty bleak outcome so far. I felt like I was delivered a death sentence but hopefully I can get enough time to be there for my kids growing up.

In the meantime I can only pass on what’s helped me, it was hard work but feeling good again helps the state of mind that maybe if I feel good I can be around a while.

All the best

[Kingbilly3 in reply to DaveQ67]

Hello Thankyou for your reply, that’s great news that your liver is compensating again, I was told march last year if I keep of alcohol for 6 month then my liver may start compensating , I have been off 11 month now but there is no change , so got told that it will always be decompensated , I am actually going to look into to slowly getting to gyms ect but not sure I would be able to do much, I do walk a bit as I have my dog and I try not to sit around all day but but gets so tiring sometimes, I find the mental part of all of this hard as well as you sharp realise you have no friends when you quit drinking and in my case no husband! My liver specialist rang yesterday as my doctor got in touch with her, he is worried because I am starting to ask questions like how long do I have left which I am due to the varices now, she said if my liver starts getting ALOT worse they will look at putting me on a transplant list yet a year ago I was told there was no chance of going on the list as I will be dead before a transplant come up 🤷‍♀️🤷‍♀️ so am even more confused x

[DaveQ67 in reply to Kingbilly3]

It can be very confusing, I honestly don’t think I’ve been given the same response in any aspect of questions I have asked by anyone.

I understand the friends disappearing… I’m in the same situation.

Once I recognised I had developed an alcohol issue and spoke to my GP it was like I had pressed a big red button. With no control over what came next.

My work wanted to me to notify the DVLA to ensure I was okay to drive a Fire Appliance, that’s when it went wrong. I was initially commended for being brave to admit my issues and proactively seek help.

Within 3 months, My seeking helped resulted in me splitting up with my wife as she used it against me as leverage, something which I’m still going through as I’m trying to see my kids which she stopped due to my admission. Lost my driving license resulting in a job loss then homeless. To then being told I have Cirrhosis.

I went from having a career I loved with a family and life long so called friends to losing everything in the blink of an eye.

The crazy thing is you’re encouraged to seek help saying that is the biggest step you will take. Well……. In my case it was the polar opposite.

The day after coming out hospital I realised I had nobody, it was mad to get my head round how things spiralled what felt over night.

I can honestly say exercise and being determined to take control over getting as fit as I can regardless of what was going on inside me has helped in taking the first step to feeling normal. Exercise has always been my go to in order to feel better regardless of what the issue is. In the case of Cirrhosis it’s dragged me back to looking like and feeling me again.

Start with small objectives and slowly adjusting them to be more difficult will add up. The stronger I start feeling physically transfers to my mental state. Hopefully it can do the same for others.

[Kingbilly3 in reply to DaveQ67]

Its awfull the people u love and need the most leave u alone to deal with this awfull illness, it’s coming up to a year now where I am starting to feel a bit more normal but I feel like each day is different , I have to wake up and see what energy levels I have!!! That’s when I actually sleep, that’s a other pain am sick of just lying awake for hours on end, they say it’s the meds, I think to be honest a lot of the lack of energy is due to my self feeling down in the dumps cos of everything but it’s easier said than done just trying to rebuild a life from scratch, me dog helps tho he is the one he keeps me on me toes 🐕😁

[DaveQ67 in reply to Kingbilly3]

I know, it’s disappointing when not only people leave you alone but are actually the ones out with knives.

I do think a hard part of this illness is the stigma, alcohol related or not. On your energy levels I really noticed a difference changing my diet in the last few weeks to limiting carbs and completely eliminating sugar. It goes against what is recommended and following the typical Mediterranean diet. But due to getting constant different info on everything so far and feeling like nobody really knows what’s a definitive way to eat etc. I changed my diet. Not only is my energy levels through the roof, I’ve not needed a nap only 6 hours sleep and even feel focussed in my thinking clearly with no fog.

I genuinely feel just as energetic when I was running half marathons in my early 30’s. I’m no doctor or expert, I also don’t want to say this is the way but I can say what has worked for me.