The dreaded liver illness.

[CHRISR999]

Hi everyone. I've not seen any posts about people living with the so called 6 to 12 month liver illness. I've gone through it twice. It's dreadful. Can people share there experiences on here for others too understand., please add to this post

[DavyGravy]

Hi Chris

Merry Christmas

I've never heard of 6 to 12 month liver illness. It sounds horrible, a year of feeling poorly. I always assume liver problems are not diagnosed until the damage is already done so I'm assuming this 6 to 12 month liver illness is something we people who already have liver damage can get? is that right?

Liver disease..... it just keeps giving, but never in a nice way

[CHRISR999 in reply to DavyGravy]

Hi mate. Where do I start with that illness. Let's put it this way you wouldn't wish is on your worst emermy. I want to see how common it is but posting about it. Please respond everybody who can relate to it

[DavyGravy in reply to CHRISR999]

I don't know if it is common, I can't say I have ever heard about it??? is it related to any specific type of liver disease? Is it something new? Is it viral? something we can catch?

[Positive001]

Hi Chris. Who diagnosed you with it and what were your symptoms?

[CHRISR999 in reply to Positive001]

I went for a fibro scan. I was, asked by the liver nurse how I felt as it came bk high. I felt OK at the time. She said oh!!!! Most ppl feel unwell she said. Then shortly after I felt dreadful. I rang her she said u will feel unwell for 6 or 7 months. I even got a letter from consultant saying I have a scarred liver. Also went on to say it may take some time before u feel well again. Said those words in the letter. Yet no one seems to have heard of it.

[200987 in reply to CHRISR999]

What is this condition called?

[AyrshireK]

In all my years on the forum I have to say I've never heard of the "so called 6-12 month liver illness".

Hope you start feeling a bit better soon.

Katie

[CHRISR999 in reply to AyrshireK]

I've got a letter from consultant saying I have a scarred liver n it may take sometime before I feel well again. I might upload it for all to see

[Simonamur in reply to CHRISR999]

If it is a scarred liver that might be called cirrhosis. Could be a first stage where your liver might be able to recover and go back to normal. Also you wouldn’t have any symptoms. The fact that you’ve got some symptoms and you don’t feel well sounds more like an advance stage of cirrhosis. I would suggest to go and seek for a second opinion.

[Kakey]

Does it have another name?

[CHRISR999 in reply to Kakey]

It's not a name as such. I spoke to a paramedic she told me she know someone who went jaundice n went through the 12 month thing. That's her exact words. Yeah no one on a liver site seems to have heard of it.. Confusing

[Hidden]

Hi Chris,

What have you been diagnosed with? We are not familiar with the 6-12 month liver illness?

[CHRISR999]

I'm absolutely astounded you done know about the illness linked to liver disease. Even my liver nurse said can take 6 or 7 months. Some take longer. Its a scarred liver I have. Due to alcohol.

[Positive001 in reply to CHRISR999]

I think maybe they mean you have fatty liver and need to quit drinking, adopt a healthy diet and exercise and within 6 to12 months your liver will begin to recover.

[DavyGravy in reply to Positive001]

Yes that would probably be what the GE and Liver nurses meant.

I think you've figured it out Laura.

[Positive001 in reply to DavyGravy]

Yes, thanks Dave, if no one has ever heard of it including the trust, it doesn't sound as though 6 - 12 month liver disease is an actual condition, merely an average length of time it would take to reverse fatty liver, which as we know is a condition.

[CHRISR999 in reply to Positive001]

I had a reading of 12.7 n a cap of 328. My liver was enlarged n spleen.. I was told I had cirrhosis but liver nurse. I went thought a terrible illness with it. Starting with feeling very ill. Then good n bad days. Then felt fine for a month. Then odd days I felt ill. Then right at end I felt really poorly again. Then symptoms faded n eventually felt well again.. The liver nurse said you have to ride it out. Can be ill for 6 or 7 months. Some ppl take longer age said. I have a letter from consultant saying because I have a scarred liver it may take a while before I will feel well again. It's a dreadful illness.. U feel terrible on the bad days.

[Zukosmile07 in reply to CHRISR999]

You feel like that just with cirrhosis everyday and maybe they are hoping to reverse your condition.Good luck 🤞

[Cat-B in reply to CHRISR999]

It’s sounds like you have hepatitis with some degree of alcohol related liver disease, you must stop drinking and no painkillers especially paracetamol or codine, you need to eat a high protein, high calorie diet to allow your liver to rest and recover. Hope this helps, it’s all up to you now Good luck, I have end stage liver disease you really don’t want to develop it!

[idyllic420 in reply to CHRISR999]

what were your liver function test aka LFT blood test numbers when you were diagnosed with cirrhosis? Did you get any imaging( Ultrasound, CAT, MRI) done to confirm it?

[200987 in reply to DavyGravy]

Fatty liver doesn’t really make you feel ill. Cirrhosis does or alcoholic hepatitis

[Positive001 in reply to 200987]

Chris said he didn't feel unwell til he was told by the nurse that some people feel unwell. Dispite being asked what his symptoms were, he hasn't told us. Sounds like fatty liver and anxiety to me 🤷🏻‍♀️

[Hidden in reply to Positive001]

Hello so with a fatty liver can it be corrected if stop drinking or is once the scarring done it's done but won't get any worst I had one high liver count last year stopped drinking 3 month's it went to very normal range don't know if fatty tho 🤗

[Positive001 in reply to Hidden]

Hi yes with a healthy diet and no alcohol, fatty liver can be reversed. The liver is an amazing organ as it can regenerate itself if you also stop chucking junk food at it which are high in fat, sugar and salt. Along with commitment to plenty of exercise and drinking plenty of water your liver will serve you well and continue to carry out it's 500 functions successfully so don't abuse it.Laura x

[Hidden in reply to Positive001]

Hi thank you that's inspirational news I'll continue my alcohol free Christmas best wishes to you hope next year is a better one for us all 🤗

[Positive001 in reply to Hidden]

Thanks. Yes we all look forward to a better new year xx

[Hidden in reply to CHRISR999]

Hello what caused it did you drink a lot of alcohol🤗

[pushthrough]

Hello Chris, I have never heard of this either. I'm wondering if your Specialist is referring to alcoholic hepatitis accompanied by liver scarring. Giving up alcohol can make people feel sick for a while but I never heard of it taking 6 months. It took me a few weeks after a 3 day stay at the hospital with alcoholic hepatitis to feel better. My eye jaundice was gone after 1 week. To sum up, I'm wondering if your specialist is referring to alcoholic hepatitis and detoxing from alcohol? You really haven't gave us a lot of information to go on.

[pushthrough]

I read your posts again. I think you might be talking about what some call a "liver attack" from alcohol which is what I had. It's essentially alcoholic hepatitis. Depending on the severity and the individual I guess it could take a while to recover.

[CHRISR999 in reply to pushthrough]

How did u feel with it.

[pushthrough in reply to CHRISR999]

I was out of it because they detoxed me using benzodiazepines and I was on a banana bag with vitamins, minerals etc… my body was low on. Other than that I felt fine. After a few weeks full recovery aside from anxiety. My kpa is 18.7 and my cpa is in mid 200s. I have compensated cirrosis and feel great. Hopefully I will be around at least another 20 years. No pain at all and don’t feel sick. Prior to the hospital I was heaving, felt like I had the flu and not eating. Others here have it much worst and have bad symptoms.

[CHRISR999 in reply to pushthrough]

I had a ton of symptoms. No appetite at all. No libido, very nauseated, weakness in limbs, extreme fatigue, felt really unwell. Eyes felt like they were burning. When I told liver nurse she just nodded her head. Never explained anything. She's left now but she seemed to understand it. There's a young lover nurse there now. She doesn't seem to know much about this illness. Yet the other one did.

[kensimmons in reply to pushthrough]

According to this chart that is right on the border between cirrhosis and not cirrhosis.

mskcc.org/cancer-care/patie...

[pushthrough in reply to kensimmons]

Hello ken if that was meant for me I saw that as well a few days ago. However I’m being seen at the Mayo Clinic and the specialist diagnosed me with cirrhosis. If it wasn’t one of the best liver facilities in the world I would get a second opinion. For whatever reason all documentation says cirrhosis including the MRE. The fibro results I cannot read for whatever reason which is why I’m glad I took a picture. Either way I’m hoping it regresses and goes to f2 or f1.

[nerd1]

Hi Chris, I'm confused - are you referring to pain you're experiencing now or in the past? You've said you had a fibroscan score of over 12 which reduced to 4.6 after two years. Did you have hepatitis? What has your doctor said about the reduction in kpa if you don't mind me asking?

[CHRISR999 in reply to nerd1]

I might have had hepititus I'm not sure. My enzymes were 160 ish. But I never went yellow. Liver nurse did say watch for any yellowing or bleeding after first scan. I suppose she thought I'd carry on drinking so that's why she said that. It's all confusing. My kpa went down to 4.6kpa.the consultant said I had regressed. I don't think that means fully healed. Just got better I'm guessing

[pushthrough in reply to CHRISR999]

4.6 kpa is low. That’s almost normal from my understanding. Check with doc though.

[CHRISR999 in reply to pushthrough]

Although it low its was 12.7kpa.meaning scarring. If it regressed doesn't mean its gone. Means the tissue got softer like a scar on outside of body does over time. That's my reckoning anyway

[nerd1 in reply to CHRISR999]

Fibroscan is also influenced by inflammation - if your AST was above 100 it could have made the fibroscan score appear higher (my source for that is a paper by Dr Sebastian Mueller - I'm not a doctor etc). I think it might be worth clarifying this with your consultant - you could ask what the reduction in kpa actually means in terms of fibrosis? And then report back to us! 😀

[nerd1 in reply to CHRISR999]

Hi, congrats on reducing your score, you must have worked really hard 👍 This is something I'm confused about - if your kpa score reduces after stopping alcohol, does this mean the fibrosis has regressed or could there still be some fibrosis there? E.g. some people have reduced from over 20 kpa to about 11 kpa, but still have cirrhosis. Don't know if anyone on here knows? nerd x

[CHRISR999 in reply to nerd1]

I'm also comfused with it. Theres no clear answers by looks

[AyrshireK in reply to nerd1]

If by drinking alcohol you have ongoing liver inflammation then a fibroscan can struggle to tell the difference between inflammation and actual fibrous tissue therefore someone may get a falsly inflated fibroscan score which might indicate more damage that there actually is.By stopping the booze you stop the inflammation and a subsequent fibroscan score should be more accurate and reporting only the degree of actual fibrosis present.

Katie

We've had people on here with fibroscan scores at the full 75 kPa but it was when their bloods were massively elevated and liver seriously inflamed. Getting the inflammation under control has brought numbers right back down.

[nerd1 in reply to AyrshireK]

Thanks Katie. Yes, I understand that fibroscan gives higher results due to inflammation. My query really is around whether the fibroscan would definitely pick up any underlying fibrosis once the inflammation has resolved. E.g. People who have gone from say 20kpa to 10kpa unfortunately haven't gone from F4 to F3 - they still have cirrhosis but fibroscan would classify them as F3. nerd x

[Kji378]

Hi Chris 🙂

Are you in the UK? Only asking because sometimes liver terminology can be different in the US?

Whatever the confusion, I would go back to your Consultant, find out if your Cirrhosis is because of Hepatitis C ~ you mentioned you weren't sure if you had it or not. That would be a good starting point.

Ask your Consultant to explain EXACTLY why, where, what and how because Cirrhosis is a very, very complicated and is different for everyone.

Personally I wouldn't listen to those two nurses or paramedic that told you you should be ill or worse and they talked of 6,7 months. I was told things by nurses that was very incorrect and I was bouncing their quotes to and from the Dr (who was not my Consultant) when I was in hospital. It could have got very heated because I was so confused by their different advice, SO LISTEN TO THE CONSULTANT not the nurses.

This was my own experience and I am NOT saying all nurses are like this.

I hope you get to the bottom of it and can tell us what exactly he/she says. Because I'm sorry to say I have never heard of the 6-12 months either.

Have a brilliant Christmas

Take good care, get on the case with your Consultant to explain, so you understand 100% what it is.

🙂 warm wishes

[KC108]

Get copies of all your reports. Find out what you are actually diagnosed with as 6-12 month liver illness is not a diagnosis. See a hepatologist and not a liver nurse.

[Hidden]

Hi Chrisr999 - a '6 to 12 month liver illness' I would suggest perhaps isn't the name of a condition (as my colleague has mentioned) but it could potentially describe a whole range of liver conditions. I would suggest clarification with your liver team (nurse or consultant) and explain that you need an actual diagnosis and explanation of this term rather than the more vague description you have been given. Best wishes

Trust10.

[Roy1955]

Sounds like you have a damaged liver that might recover and the symptoms might resolve in 6 to 12 months if you stop abusing it.It's not a 6 month liver disease, you misunderstood what the experts were telling you.

It's a LIFELONG condition now and you need to respect it.

You have a damaged liver that will worsen if you abuse it, probably it will soon become damaged beyond repair and you could progress to full on cirrhosis and could die!

No such thing as a 6 month liver disease, its a 6 month recovery if you identify the cause you stop causing damage.

Or its a life threatening disease if you ever drink alcohol again.

Talk again with the nurse or Dr and understand what they are telling you.

[CHRISR999 in reply to Roy1955]

Thanks Roy. I do understand it. Yeah is a bunch of symptoms I experienced was awful. The expert did say 6 to 7 month I might be ill. So it is a liver disease related illness. But last time I spoke to a new liver nurse she said my liver had repaired and no scarring now with a reading of 4 7kpa.its all confusing as I was, told previously I had compensated cirrhosis. N a severe fatty livers. My readings were 12 7kpa.abd cap 328. On my first readings. Now there saying everything normal so I don't get it.

[AyrshireK in reply to CHRISR999]

Chris you've been posting that you are puzzle about this since your earliest post when in replies we pointed out that 12.7 kPa was never F4 cirrhosis (if alcohol was the cause) and you did have fatty liver with inflammation. The fact you also had inflammation at the time of the scan could have falsly elevated the kPa reading too.

You then turned things around by all the wonderful lifestyle changes you made which was what doctors indicated you needed to do in order to reduce your symptoms in the timescale mentioned.

You said you had a cigarette some months after your initial illness and this brought on a return of some symptoms.

[CHRISR999 in reply to AyrshireK]

Yeah I get this. But now my readings are 4 6kpa and cap 168. Liver nurse said I had no scarring n minimal fat. I was led to believe none of this was possible? Once scarring was there it was perminant. But now told I don't have any scarring. This is the confusing thing. Thanks

[AyrshireK in reply to CHRISR999]

You didn't have full on cirrhosis/scarring in the first place - you had fibrosis (at the most F3) and inflammation and fatty liver. Fibrosis and even early cirrhosis are reversible and that's what's happened by your great work on changing your lifestyle round. The fibroscan score chart doesn't hit the point where your liver is cirrhotic through alcohol until almost 23 kPa (at 12.7 kPa it was sitting in the early part of F3 fibrosis).

Katie

[CHRISR999 in reply to AyrshireK]

Okay great. I get that but I had 1 drink n a whole bunch of symptoms came back. After they told me I had no scarring or fat. So not sure how that can make any sense. Especially saying I'm bk to normal. It's all confusing

[DavyGravy in reply to CHRISR999]

That's just your body saying it can not tolerate alcohol any more Chris. Your body recognises alcohol as a toxic substance to you, even if you do not. You have been lucky up to now, you keep drinking and saying "when I drink i get these problems" common sense says, stop drinking = stopped problems. If you do not stop drinking you will scare yourself again thinking you have cirrhosis. Do yourself a huge favour, you are extremely well and healthy, listen to your body when it complains and stop drinking.