Log in
British Liver Trust
17,166 members8,630 posts

A normal life with cirrhosis?

I all, Im 36 years young, but just found out I have compensated cirrosis with no other symptoms. I'm waiting for a fibroscan at present. I'm really healthy and don't drink etc and eat great and exercise I'm just kind of wondering about the future and what it holds...

I was wondering if i might be able to get married, have a family, bother to ay into a pension, or if its just downhill from here onwards and not worth me bothering with my career and stuff? Sorry to sound so bleak, just having a pretty sad day about it all and worrying so much...

Any one have any thoughts? thank you :-)

22 Replies
oldestnewest

You need to find out why you have cirrhosis before you can get answers from your medics to all these questions.

Good Luck

2 likes
Reply

Drinking! I know for sure, and I know for sure I have so completely stopped, that stuff never again!

Thanks for the good luck Carmik

3 likes
Reply

How much were you drinking?

Reply

Hey

I know it's hard some days but please try to stay positive, stressing out can have adverse physical effects on your health. No one can predict the future so why worry?

I've read of people on here living with cirrhosis for decades. If it were to change to decompensated, you have some of the best teams in the world performing transplants in this country. Hopefully it won't come to that but if it does, it's not the end of the world, quite the opposite. I along with many others are living proof of that.

Hope everything goes well for you and again, don't worry be happy 😊

9 likes
Reply

Thank you KO, I know if is hard to stop yourself worrying. I've just booked a call with my GP tomorrow, hopefully she will write me a letter to try and have my appointment with a Hepatologist and a fibroscan 'expidited' as I now have another 16 weeks to wait. She wasn't sure it would make it any quicker as I have no other symptoms.

I'm just in a strange place as I've fallen head over heels with a guy and him me, its still early days and he doesn't know about any of this. we're both a bit older and him more than me and it jus seems so perfect, but I feel really bad letting things go any further. So i'm letting my self worry about even this!

That said, I'm trying to be happy! :-)

4 likes
Reply

As I said on a different post, the only way to see a specialist quicker is having that first appointment booked privately. Many NHS consultants do private work on the side so seeing one initially that way is great for getting seen quickly. It worked for me but then again, I don't know what your financial situation is so can't really comment any further.

If your new man feels the same way about you as you do about him, this will not push him away. If anything it will bring you closer.

As for being positive, other than my family, there were 2 things that kept me going when I had decompensated cirrhosis. 1. It could always be worse and 2. As the late Christopher Hitchens said when asked what he thought about having advanced oesophageal cancer, the question one should be asking is not why me but rather why not me?

I know it's a bummer having to deal with something like this at 36. I never thought I'd be needing a liver transplant at 32 but it is what it is. The only thing for me is I can never repay the donor who gave me a new lease of life, which is so bittersweet when you really think about it.

9 likes
Reply

Hi, Ko_1234.

How it's possible to live for decades with full blown Cirrhosis of liver?. Once the liver reached the point of F4 Cirrhosis it's really very difficult to maintain status quo condition of the liver. it's written in Text book,Hepatology journal and related website that 5 yrs survival is less than 20 to 25 per cent. In about one to one and a half yrs compensated liver turns in to decompensated phase.Other wise it would be simply a miracle. Thanks

1 like
Reply

Dewan52, I'm not a medical expert and expressed what o believe to be true. We don't know what stage this lady's cirrhosis is, she hasn't even had a fibroscan or seen a hepatologist yet. There's plenty of evidence that in the early stages, cirrhosis can be slowed down, sometimes even reversed with a good diet and lifestyle.

Here we have someone who is worried sick. Giving bleak statistics when you don't know the full details of this particular case is a little irresponsible don't you think?

Speaking from personal experience, I knew I was really unwell when suffering from cirrhosis. Don't think I would have appreciated anyone telling me I had months or a few years to live!

8 likes
Reply

I'm also not a medical expert.you did not mentioned specific stage of Cirrhosis.That's why I just said that stage F4 fibrosis ultimately leading to Cirrhosis (scarring of liver tissue, liver becomes hard and could not perform its normal functions)it's rarely possible to live longer than 3-5yrs without successful transplantation. As it is an online age one should try to be more specific when writing something especially on medical disease. Thanks

Reply

We have members of the forum who have had a diagnosis of cirrhosis for 20 years plus and are still doing ok in the grand scheme of things (still working, driving etc). My hubby has had a diagnosis of cirrhosis for 5 years + now - it only came to light following a massive upper GI bleed and jaundice (which rectified almost completely during a 3 week hospital stay). After 42 varices banded & and a splenic infarction his portal hypertension is gone and having spent 10 months listed for transplant his blood results returned to normal and he was delisted (no longer meeting the criteria). I won't say he is symptom free - no libido, chronic fatigue, sleep disruption, confusion and memory issues and minor HE symptoms but no where near decompensated cirrhosis - touch wood he has never had any fluid build up (he's not even diuretics), no jaundice etc.

The one thing I have learned through 5+ years of living in close proximity with liver disease is every single persons journey is completely unique and statistics don't reflect this dynamic. Certainly not true that a compensated liver goes decompensated in a year to year and a half.

Katie

10 likes
Reply

Hi Katie

Sorry to hear about your husband's struggle for 5+ years. It must be horrible for him to be in a limbo where he's not cured yet not ill enough to be considered for a transplant. There must be something they can do. Surely if it's affecting his quality of life, which judging by what you're saying it definitely is, he should be given the opportunity of a transplant?

Wishing you both the very best, hope you can stay strong.

Klodian

2 likes
Reply

It's too big a risk Klodian and there arn't enough donor livers available so they can only consider the most poorly for transplant.

A small percentage of people don't make it off the operating table and from 5 years of being a member on the forum we've seen that transplant doesn't always prove to be the golden ticket to renewed life and can bring its own troubles with it.

When he was first delisted we felt awful - like the light at the end of the tunnel was switched off BUT we soon looked more positively on it. He is no where near deaths door and is being closely monitored and we live the better days and make the most of them and just write off the cr*ppy ones. We get away in our caravan and he can rest up when he needs too and the change of scenery is a good thing for us both.

HIs life is definitely poorer for having liver disease but hey when life gives you lemons ............. make lemonade!! (except he can't drink anything citric due to gastropathy!!).

Thanks for your thoughts.

Katie x

5 likes
Reply

Thats so not accurate at all. There are people with compensated cirrhosis that were diagnosed 20 years ago. The key is what is causing the damage. Alcoholic cirrhosis progression can often be halted completely if the booze is stopped. If there is an incurable underlying disease causing the cirrhosis that's a different story.

2 likes
Reply

Hi again Charleeeeeeeeeee

Having Cirrhosis will not stop you doing anything you want to do. I think you say in your reply to KO that it was alcohol related. If you've stopped drinking then its progression may even have been halted.

If I were you i would carry on with whatever you planned to do. Get a job, open a business, have a family, get a pension, go on holiday, buy a house, a caravan, a boat, a racehorse, a donkey or whatever else you would like to do. Cirrhosis doesn't have to be a death sentence. As KO says, people can carry on for many many years without too many issues arising, particularly if they have stopped doing the thing that was causing the damage.

If it did come to it, and you needed a transplant, then you can do almost everything after that you were able to do before. I know i can, albeit a little bit slower at the moment.

If you took the view that now i have cirrhosis i shouldn't do all those things, what will you be thinking when you're 40, 50 60 or 70 and still going strong? Looking back on what you could have done but didn't just because of an outcome that no one can be certain of. If anything Cirrhosis should be a reason for you to get on and actually do what you want to do. What ever then happens, whether it progresses or not, you'd then have no regrets about not doing something.

18 likes
Reply

Kristian, that reply is so so beautiful!

Thank you so much guys. ❤️

I’m just gonna try and do my best, stay healthy and happy and do all the things I wanted to do. Life is for living and enjoying! 😁😁😁

10 likes
Reply

In the exact same boat same feelings at 25 years old with a 1 year old daughter :(

2 likes
Reply

I'm sorry to hear this x I got diagnosed with autoamuine hep that can lead to what you have .I felt the same as you .death sentence ..its not there's a group on fb imh.org search there brill and so reassuring .Please don't get down or sad I know exactly how you feel I was the same perfectly healthy never abused anything and bingo developed this ...cruel isn't it xx

4 likes
Reply

Diagnosed with cirrhosis last December, seen Doc july just gone, stage 5 out of 15, compensated. He said I could live normal life if I stop boozing mainly and eat better with exercise. Good prospects ;)

6 likes
Reply

I know how you feel. When I was diagnosed with chronic liver disease I thought I'd only have a limited time left. From my scans and tests the doctor said you'd think I was bed bound but I work full time, have 2 dogs and become a part time food blogger. I have days of severe fatigue but all you can do is live for now and make every moment count. I must admit I wanted kids but have stopped that idea and also don't plan a pension. You never know what life has planned and maybe in a few years they will find a way to reverse it. My fib was 75 kpa the worse result you could get. They repeated the scan one year later and was hopeful it was a mistake the first time but it came back 75 kpa again. I could curl up and feel sorry for myself but instead I try and make my life count. One thing that's really helped is cutting out meat and animal products. My specialist said my blood was the best ever since I'd gone vegan. I wish you luck & be strong.

6 likes
Reply

I’m wondering about the benefits of a plant based diet and found your post interesting

2 likes
Reply

Hi

I agree with those who say we don't know what is round the corner. Anything can happen. The main thing is to use this as a wake up call about getting off the booze or whatever. Is causing the grief, if you possibly can.

The next thing is to have dreams and try to live them. The last thing you want to do is get to 80 and realise that you didn't do anything because you thought you only had a short time to live.

Take care, get advice and support, and hope the love life is successful.

Gx

5 likes
Reply

You are all a bunch of superstars and thank you so much for giving me hope. I’m not going to give up on anything. My Dad is still here at 80, my mum at 70 and I have just had the guts to tell them both and all they do is love me. My mum has just told my brother the hell I went through this summer finally stopping drinking forever now I know it’s cirrhosis but have done it and now finally after about 3 years of not speaking he has sent me a Christmas card and said to them if there is anything he can get me for Christmas he will and hopes we can talk again. I have hope of putting things right and a happy future for us all, whatever caused and whatever er state we are with this horrible disease,

Much love to you all xx

7 likes
Reply

You may also like...