Hello

[Lladro]

Hi I am new to this Forum and just wanted to say hello. Not sure what to do. Hope everyone is ok

[Bootandall]

Hello Lladro,

Thank you for the well wishes. Feel free to ask questions regarding treatment or just tell us about your health. Welcome to the forum!

[Uplight99]

Don’t know what to do about what? Tell us!

[Lladro]

Nooo you miss understand, I don’t know what to do on here. I joined as I have cirrhosis, decompensated, not very good with the terminology. I was diagnosed 2 years ago and had a very rough time. I have never met anyone in the same circumstances and have always felt quite alone. I was very near to death and it’s changed my outlook on life completely. I was just interested to hear what other people have been through and are still going through.

[Uplight99 in reply to Lladro]

Sorry to hear that.

You are however in the right place. Although I’m still young and I am fortunate enough to not have run into any liver problems myself, the majority of people here have and they are lovely people who will help and support you.

There’s people active on this forum daily who suffer with all types of liver issues: cirrhosis, fatty liver, hepatitis etc etc. Some are related to alcohol, however some aren’t. So I’m sure you’ll find someone who is/has been in the same position as you!

Good luck

[Uplight99 in reply to Uplight99]

To add to this, if you have a question to ask, no matter what it is, the people on here will try their best to answer if and give you advice, so don’t be afraid to voice your concerns

[Lladro in reply to Uplight99]

Awww thank you that’s really kind

[Uplight99 in reply to Lladro]

No worries. A good place to start would be giving us a bit of a background of your illness (if you don’t mind)

How long have you had it, your age, if it’s alcohol related or not etc. This way we can give you the best possible advice.

[Marydel63 in reply to Lladro]

Glad you found us!!

[Lladro]

Haha I could write a book, but briefly I am 53 went into hospital nearly 2 years ago, diagnosed with alcohol related cirrhosis, I was then stage 4, told I wouldn’t survive had every possible related illness connected to cirrhosis, had varices, I may get the words wrong, needed banding for nine, had five done, I haemorrhaged but they managed to save my life god knows how. I won’t go on. I have done really well my bilirubin was over 600 when I went in, a couple of months ago it was down to 6. You name it I have had it. Now all is good but I feel like it’s a ticking time bomb.

[Uplight99 in reply to Lladro]

You’ve been through a lot, you’re really strong.

I think there is actually someone, or maybe others too, on here that was really close to death and managed to recover to live their life. It’s quite late and I find people are usually more active in the day so hopefully tomorrow you’ll get an array of people welcoming you and making you feel at home.

[AyrshireK]

Welcome to our merry band Lladro.

Just whenever you feel the need to post then fire away, whether it be questions, sharing experiences or having a rant in the safe space here.

You'll get loads of support and we can help make sense of stuff too if you are confused about anything. No question is too daft. Whole gambit of experiences on here, all sorts of liver issues, all levels of experience right up to transplant and beyond. Loads of us here are also supporting loved ones with a liver condition.

Some members like abit of a banter too to ease stresses so you'll find all sorts of folks here.

All the best, Katie

[Lladro in reply to AyrshireK]

Thank you that’s very kind

[Bootandall]

Katie is the expert on this, but it sounds like you were decompensated but have compensated cirrhosis now. It is a sliding scale if that makes any sense. You will always have stage 4 (some idiots, j/k 🙄😁 still say "end-stage") liver disease but there are actually two different ways to stage liver disease.

The first scale goes from no liver damage, but signs of inflammation, to fatty liver (same as it sounds, liver contains fat) to fibrosis (pre-scarring, indicated by stiffness, as the liver is a bit sponge-like) to cirrhosis (scarred and bumpy liver, hardened to blood flow going through it). I may have some details wrong, so anyone feel free to jump in with more information! It is my understanding that you cannot reverse cirrhosis, but that you can reverse fatty liver, and even fibrosis to some extent, with dietary and lifestyle changes.

Then there is the way cirrhosis is staged. The first two stages are compensated, and the last two are decompensated. These stages guide your ongoing medical care, depending on where you fall.

If you have cirrhosis like me, your goal is to stay in stage 1 or 2 (compensated) and out of stage 3 or 4 (decompensated). Once you have varices, unfortunately (as you and l do), your goal is to make sure you don't have another bleed, among other complications. I'm sorry l cannot recall the exact stages. Anyone?

[ThreeSmiles in reply to Bootandall]

Hi Boot 😀

Perhaps the best thing is for lladro to have a look at the patient Guides linked on here - see “Pinned Posts” on the right of the screen - well it’s to the right on my iPad 😀. The one on cirrhosis can be found at this precise link.

britishlivertrust.org.uk/in...

Miles

[Bootandall in reply to ThreeSmiles]

Thank you Miles! l don't have it on my screen and couldn't remember where to look. 😁👍

The information l was trying to convey was told to me by my liver doctor, when l finally screwed up my courage enough to ask how much time was involved in this "end stage" situation. Imagine my relief when l learned it could be many more years, as l am in my (very late😌) 50s.

[ThreeSmiles in reply to Bootandall]

Trouble is he told you that when you were in your forties.....

.

<joke 😀>

[Bootandall in reply to ThreeSmiles]

😌🦍

[Pussycat65]

Hi and welcome. I to am fairly new to this but find everyone so helpful and nice.

[davianne]

Hi Lladro,

Welcome to our friendly, knowledgeable forum.

I was diagnosed nearly 4 years ago with "End Stage F4 cirrhosis", and was given a prognosis of 6 months to a year, and guess what, I'm still here 😊😊😊, and now compensated. Are you compensated now, and have your symptoms stabilized? I still have many of the symptoms of cirrhosis, but some are mostly gone 🤞🤞🤞.

You have already had a great welcome from our lovely members here, so just ask away when you need help, support or others experiences of living with cirrhosis, and someone will be there for you. (are you Welsh by any chance ? with Ll ?)

Take Care and Stay Safe,

David

[Lladro in reply to davianne]

Wow you have done amazingly well. My last liver scan was a Christmas and no improvement from the year before which was decompensated then but I haven’t been told if it has gone from decompensated to compensated. Not on as many meds. I am working full time and I would say the only symptoms I can say I have is a bit foggy sometimes and a feeling of being so tired and exhausted. I never used to sleep now I could sleep ‘on a clothesline’ as my mother used to say. I feel quite naive when it comes to this ‘disease’ not sure how I should feel, if I feel ill am I overreacting or is how I’m feeling ‘normal’ and I should just get on with it... so many questions, sorry. No not welsh 😊

[Hidden]

Welcome Lladro you've been through the mill well and truly , but it's good to have you on here now, you wont go far wrong on here, lovely bunch of people who are all here to help and talk to. 👍