Looking for stages answers...

[Pete728]

Hi, I'm new on here, I was told January I had cirrhosis (well compensated) I also know people with cirrhosis and they keep telling me about different stages 1-5 but I asked my consultant about this as I'm currently on a study trial drug to try and bring the scarring down but she said...there's not stages in cirrhosis, it's either compensated or decompensated and mine is well compensated and is all working fine. I have even read online that there is different stages but I can't get any answers. If anyone can give me a clue, I'd be very grateful. Thanks guys 👍

[AyrshireK]

The only staging of actual cirrhosis i've heard of is Child Pugh A-C and the compensated/decompensated stages 1-4 which are determined on symptoms present.

Stage 1 - no varices, no ascites (compensated)

Stage 2 - varices, no ascites (compensated)

Stage 3 - ascites, +/- varices (decompensated)

Stage 4 - bleeding from varices, +/- ascites (decompensated)

Most folks don't get told much in the way of staging etc and its not all that important to know. More important to get on with living the best life you can and keep doing all you can to keep your liver as well as possible.

Katie

[Dexter786 in reply to AyrshireK]

If you’ve had Varicies but are now all banded and no other symptoms ie acities etc then is this categorised as compensated?

[AyrshireK in reply to Dexter786]

Thats where my hubby is - initially decompensated when presenting with a massive bleed from varices but now all banded and deemed compensated.

[Dexter786 in reply to AyrshireK]

thank you, I had one big bleed and ended up in A&E. I had 4 bands in hospital and 2 further bands at the follow up 4 weeks after. Since then no further bands and all clear with 6 monthly checkups.

[Pete728 in reply to AyrshireK]

Hi, can I just ask how long your hubby was diagnosed? And what he he doing to try and keep on top of it? Mine was partly to do with drink and partly fatty liver due to all the fast food and rubbish I eat I guess so I've stopped drinking and say tried to sort my diet out but still eat some rubbish but have cut a lot of it out. I'm due to see a consultant in Nov so I will be asking them all the questions then.

[AyrshireK in reply to Pete728]

Hubby was diagnosed in April 2012 after a massive variceal bleed completely out of the blue. His condition is labelled auto immune cirrhosis as he's life long t-total and was fit and active up to his sudden diagnosis. He's been through transplant assessment and was listed in 2014 but delisted in 2015 after improving sufficiently to be no longer eligible for t/p.

[Pete728 in reply to AyrshireK]

Hi, so your hubby never drank alcohol? Or been clean for years? What's he doing to manage it? watch what he eats etc....sounds like he's battling on if this was diagnosed back in 2012. Well done

[AyrshireK in reply to Pete728]

Never drank alcohol, never ate unhealthily and was an avid long distance walker doing 1000's of miles a year walking. His condition is nothing to do with lifestyle. His own immune system has attacked his liver for some reason. Certainly battling on, his main symptoms are chronic fatigue, cognitive difficulties, sleep disturbance, symptoms of Hepatic Encephalopathy.

He is actually on a high carb, high protein diet as recommended by liver specialist dietician.

Katie

[Pete728 in reply to Dexter786]

I don't even know what varicies, acities, all banded means? All I know is I kept having blood tests due to being a alcoholic, end up having a biopsy when I ended up in hospital poorly and that's about it. Don't know a thing apart from its well compensated

[AyrshireK in reply to Pete728]

One side effect of cirrhosis can be a thing called portal hypertension - it's where the blood struggles to get through the scarred liver tissue and starts to back up in your portal veinous system and it ends up in smaller blood vessels which arn't designed to carry such increased amounts of blood resulting in the blood vessel walls bulging and this is what varices are - they often occur in the GI tract (oesophagus, stomach and sometimes bowel). Treatment can mean having to take a beta blocker and/or undergoing upper GI endoscopy and banding/glueing. My hubby has had 42 varices banded.

Ascites if fluid build up in the tummy and sometime oedema in the legs and feet it.

We didn't get told anything when hubby left hospital after his bleed other than he had cirrhosis. All the information i've gained since then has been self learned using BLT website to start and then doing various online courses etc.

Learn about your condition yourself so you can make the most of your clinic appointments. britishlivertrust.org.uk/in...

Katie

[wp69]

Hi Pete , sounds like your doing well , what trial drug are you on and what's its expectations , thanks , Will .

[Pete728 in reply to wp69]

Hi, yeh it's been tough but what do you do? Give in and hit the bottle again?! It's a resus clinical trail.sirolimus 0.5mg or placebo. I have just finished the 6 month trial and had another biopsy that was showing no real change but the doctor said...that's what they expected till they gather all the evidence and look into the samples closer and let me know. I think this trial was to try and stop the scarring and the next 1 starting is to reduce the scarring but had a couple of messages saying do I want to go on different trials better suited for me? God knows? It's like it's just a lucky draw haha but she mentioned something to do with a horizon study so sure I will find out soon

[wp69 in reply to Pete728]

Nice one mate , im recovering from a bout of hepatitis , long old road , but its doable , wish you well mate , regards Will.

[2022minks in reply to Pete728]

Hi Pete728, the best thing you can do is stay clear of any alcohol, however tempting, as stopping will improve the health of your liver. Download the British Liver Trust free information as this will show you what could happen if your liver begins to not work properly, and also may help you to change your lifestyle for the better. Xx

[Pete728 in reply to 2022minks]

Hi, I went into rehab in Jan and not touched a drop since, its just my eating habits I need to sort now but I have cut down on a lot of stuff like fatty foods, sugar/salt etc...but 1 step at a time haha I think the most important thing that needed to stop is the alcohol as I was drinking around 2 bottles of vodka a day so just stopped as couldn't cut down. But after reading some comments on here I keep thinking are my ankles/feet swollen? Is my stomach swollen? But might just be getting paranoid? I did break my heel a while ago and had massive problems since as its not healed right so I think that's partly due to that

[LolaBow in reply to Pete728]

Hi Pete728I'm on the same drug trial you've just completed, I've got 7 weeks left before my 2nd biopsy/Mri scan... I was diagnosed with Fibrosis liver.. Still feeling OK on the drugs, I have said to my consultant ' I think I'm on the placebo' as they taste so sweet ( but I'll never know...He also mentioned another trial if this one goes OK.

The only stages he told me was the stages of banding the liver disease, He drew 5 livers and circled number 4 and said I was in that band . I've made a few life style changes so hoping after the trial it has helped change my liver..fingers crossed

[Pete728 in reply to LolaBow]

I had the results back from my biopsy after the trial and was told its about the same as the 1st biopsy but thats what they expected till they gather all the evidence and look at the results in more detail and let me know but least it's Still compensated and not got any worse I guess. I'm trying to sort my bad eating habits out gradually but gave up alcohol in January altogether so 1 thing at a time! Haha

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Pete728,

If you [are in the UK and] 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)

Best wishes

British Liver Trust

[Pete728 in reply to BritishLiverTrust3]

Thank you, il make sure I call them. I've just been told nothing and just sent for scan after scan and these trials I keep getting put on? They have said its well compensated and the consultant isn't worried about it as its functioning fine. And that's it!

[Tonbolt275]

I am at the same stage. Getting no help , no explanation, basically just get on with it. Do you have the name of the drug you are being given

[Pete728 in reply to Tonbolt275]

Hi, yes its really annoying...I've just had a message from the research doctor this morning saying the doctor I'm trying to get hold of for answers is on maternity leave but I have a follow up appt Nov so I'm gonna start writing everything down now ready to ask them. The trial drug is called (resus trial) sirolimus 0.5mg or placebo.. I think its a drug to stop the scarring and the next trial is to reduce the scarring that is starting in around a year but I had a message yesterday saying they might be putting me on another trial more suited for my biopsy results? Something was mentioned about a horizon study so will see? It's all a bit yp in the air at the minute so just go along with it don't you 🤔

[Snips71]

Hi Pete. I hope you are as ok as you can be.

My hubby has been recently diagnosed on 6th July with NASH. When I asked about a scoring system this was my reply. Not sure it helps but I thought that I’d show you what I received via email.

May I ask what this trial medication is.

Take care and good luck on your journey.

REPLY

We don't give cirrhosis a level (it represents severe liver scarring), but we do grade the liver failure that results from cirrhosis. The severity of liver failure will vary depending on other factors such as infection which will trigger a worsening of liver failure in patient's with cirrhosis. There are a number of scoring systems for assessing liver failure in cirrhosis. One of the most frequently used is the Child Pugh score which grades the liver failure based on Bilirubin, Albumin, INR, Ascites and Encephalopathy - scores range from 5-15 and are categorised into stage A ( 5-6 pts - no or mild liver failure), B (7-9 pts -Moderate) and C ( 10-15 pts severe).

[Pete728 in reply to Snips71]

Hi, morning, yes the trial I have just finished is a (Resus trial) sirolimus 0.5mg or placebo. I believe this trial was to stop the scarring and another new trial due to start in around a year is to reduce the scarring depending if this study has worked? But I had a message off a doctor yesterday saying there is another trial drug starting soon that may suit me better based on my biopsy results so I guess I will wait and see. They do like to leave you in the dark about everything which is so wrong as your just sat there thinking... Hope you get the answers you have been looking for but just keep bugging the doctors for answers. Its took me months of texting different numbers I have to even realise who my actual consultant is! Haha

[Pete728 in reply to Snips71]

Hi, thanks for the reply..its more than I've been told so far! But I've not even been told if mine is mild, moderate or severe but I'm guessing if I'm told it's (well) compensated then it can't be severe? I had a text off 1 of the study nurses earlier saying she can understand how frustrated I am not being told a thing in 6 months but I'm due to see my consultant Nov so I will get some questions ready now. She also told me.that she can see my cirrhosis is due to too much alcohol if that helps?! Oh really haha thanks 👍

[Snips71 in reply to Pete728]

Thank you for the info.

I’m sorry you’re having to go through this.

It pisses me off the stigma that’s attached to it. Whether you drink or you become ill through something else you’re still a human being.

Hubby is decompensated. 10 weeks ago he was fine. Well there were no signs then bang the shit hit the fan. 2 admissions to my ICU with sepsis, kidney failure and the diagnosis of cirrhosis. Then we’ve been on the rollercoaster that everyone goes on.

He’s here and so are you so we continue to fight.

Good luck.

[Pete728 in reply to Snips71]

Exactly that's the way to think 👍 I take it he's stopped drinking now? It's hard work but what do you do?! Wish him all the luck in the world

[Snips71 in reply to Pete728]

Hi Pete.

He doesn’t drink. They have no idea what has caused this. I would very easily say that he drank if he did but he doesn’t. Can’t remember the last time he had a shandy even.

This is why it’s so frustrating.

All the best x

[Pete728 in reply to Snips71]

That must be really hard not knowing?! Sure you will get the answers your looking for soon. Probably easier to fix if it's not alcohol related? I know mine was partly my diet that caused fatty liver and due to the alcohol intake over years! I've finished the 1st trial and they said there's no change in the biopsy and are currently trying to get me on another till the last minute and trying to swap my next trial again baring in mind, they don't tell me nothing about the trial?! I'm starting to think...is it really worth it? I'm not even going to benefit from these long term? And it could just make things 10 times worse? X

[Roy1955]

Hi Pete.Someone has to trial these drugs but I am glad it's you and not me!

Well compensated is about as good as it gets and quiting the booze should keep it that way.

Slight increase in incidents of liver cancer means you now get 6 monthly check ups "just in case".

As for going on future trials Personaly I would say I did my bit already, not the greatest idea to have biopsies to check on their experiments!

[juneblue]

Hi. I was told by a gastroenterologist that the MELD and Child Pugh tests were for mortality rating. He uses the MELD method when scoring likelihood or probability of dying within the next 3 months. These test are used to get on the liver transplant list in the United States.

Stages of cirrhosis was explained as degree of scarring on liver with 3 and 4 being most severe and irreversible since it is a progressive disease. 1 and possibility 2 being able to be halted in the progression.

Compensated and uncompensated was explained as the livers ability to perform its multiple duties of keeping us alive. It’s a tough organ and will continue to fight for you if you help it when it’s injured. It doesn’t want to give up on you. So please stop drinking alcohol and watch your diet to give it a fighting chance.

It was explained that you can slide in and out of compensated and decompensated. Your MELD and Child and Pugh test can improve and then get worse. All this depends on you following your physicians advice. You can’t go backwards with your severe cirrhosis 2 - 4.

That being said there are some very interesting breakthroughs in technology right now it seems like liver studies are playing catch up to research of other systems and organs “ poor fellow he’s the hardest working organ. He just wants to be noticed and given a little appreciation. Got to keep your sense of humor. Endorphins can do wonders for our body”

Ps. Interesting research is being done to stop and possibly reverse severe scaring of the liver. Something about a medicine that fools the liver into producing an enzyme that will attack the collagen around the liver I’ll look for the site later

Keep the faith brother.

[Pete728 in reply to juneblue]

Sounds good. You will have to let me know...you don't hear about these things do you? It's just off the off chance and wrong gown doctors can tell you it's not fixable or reversible when clearly I've heard loads of stories that people have reversed it all the way back.

[juneblue in reply to Pete728]

Type a search for Niigata University. And The University of Tokyo, And Tokyo mrdical university, Japan liver treatment study. Something should pop up. Good luck with everything.

[Pete728 in reply to juneblue]

Hi, thank you for the info but I'm just wondering what this info is for as it's in Japan etc...?

[juneblue in reply to Pete728]

In my prior response, I mentioned research study that I read. Said I would try to find and send. There doing research around the world. Hopefully it is shared if they find a cure. I wasn’t suggesting being part of the study.

Take care.

[MisterX]

People tend to confuse fibrosis (scarring) with cirrhosis which is the final stage of fibrosis meaning the entire liver is scarred. Most "stages" refer to levels of fibrosis. There are a few different scales for this. I was diagnosed initially 6/6 and 4/4 by two different systems. Both meant I had cirrhosis.

Once you have cirrhosis you have it. Early on in cirrhosis, because the liver has self-regenerating ability, if whatever is causing the scarring can be stopped then it is possible for the fibrosis to reduce to a level below that of cirrhosis and even eventual clearance of scar tissue.

If the cirrhosis has established itself through the scar tissue simply regenerates itself. At that point you're dealing with degrees of compensation until you're decompensated.

Whatever stage you are at most of what you need to do is the same.

Best wishes.