Newly diagnosed liver cirrhosis - British Liver Trust

British Liver Trust

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Newly diagnosed liver cirrhosis

C1J1
C1J1

Just diagnosed with liver cirrhosis and to be quite honest I’m confused, emotional and scared. I gave up drinking approximately four months ago now, not that I was a heavy drinker, and I’m quite happy with that.

The registrar who saw me gave me a prognosis of 10 years. I am 57 and this has really scared me. I am being really good and trying to lose weight

Is anyone in a similar situation? And is it usual to be given this sort of prognosis? My GP said it’s quite unusual. Any advice? X

39 Replies
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Trust1
Trust1Administrator

Hi and welcome to our forum,

To be given a diagnosis and prognosis can be scary, but I would urge you to look around the forum and read the posts. You will find members who are living with cirrhosis and managing their condition really well.

We have a lot of useful information on our website including publications, Id suggest to read the Cirrhosis, Living with liver disease and our new Patient Charter that details the care you should expect to receive:

britishlivertrust.org.uk/in...

If you are in the UK we also have a nurse led helpline and it is open Monday to Friday 10am to 3pm on 0800 652 7330, we would be happy to have a chat about your concerns.

You are not alone and we hope you find support and friendship here

Warm wishes

Trust1

C1J1
C1J1 in reply to Trust1

Thank you. X

Hi

Have you been tested for all of the different reasons for cirrhosis other than alcohol related?

If not ask to see the consultant and get a diagnosis as to the cause. It just might be non alcohol related.

Good luck

C1J1
C1J1 in reply to freddie76

They haven’t specified. I have requested to see the consultant as have many questions x

Hi, I can understand this being scary for you to hear. My husband has cirrhosis, he's 46. He was diagnosed in Oct 18 and is doing really well. I know everyone's different but he just carries on as before, working full time, we have two young kids as well and he has plenty of energy. It's not all doom & gloom (although it has taken me a while to be calmer about it!).

He's never been told a prognosis in terms of years and I always assumed that he would be offered a transplant if things deteriorate, unless there are any other medical issues. He hasn't drunk alcohol since he was diagnosed. Have they mentioned a transplant option to you?

Hi there your hubby sounds very similar to me in that he has Cirrhosis but his life is the same as before apart from not drinking 😀😀. I find it very surreal knowing if I hadn’t stopped drinking I wouldn’t be here but I guess like me your husband is one of the lucky ones !? Does he get any associated symptoms at all ? I don’t. Sounds strange but you wouldn’t know I had it unless you know about my medical past. I am fit and healthy and run and go to box fit. I see my consultant once a year now but do have 6 monthly bloods and ultrasound scan. It scares me as I don’t know of something will go wrong or if my liver will stop working so well etc. It’s a scary path and I am trying to love my life to the full and I am so thankful xx

Nothing yet. I feel a bit in the dark tbh.

Hi C1J1,

You have already achieved the hardest part, recognising the problem and doing something about it!!

Yes, it is manageable, it’s not a simple journey, but you’ve already shown you have the mettle for it!!

At this stage it’s mostly about lifestyle change, healthy diet, little/no salt, sorry, no processed foods, and of course, no alcohol.

If your liver is struggling, it cannot deal well with any of these things. But, given time, it CAN heal, depending on the level of damage.

Good luck with it. Andy.

Hi, you will find lots of help and support here. I certainly have everyone on here are fantastic with their unstinting advice.

What alerted you or your doctor to the problem what symptoms were you having is that all the advice the doctor gave you? It does seem a bit odd to me but I am a newbie at this my husband was diagnosed last May.

Good luck x

briccolone
briccolone in reply to Bs1524

was going to ask the same thing...good question

Hi C1J1, you have already had good advice, but here's my story. I was diagnosed in Oct 2016 when I was 69 years old, with F4 cirrhosis, and I was told my prognosis was 5 to 10 years, with good management. I stopped drinking immediately, and tried to follow a healthy regime......diet, no salt, and exercise when I'm able. I do still have some of the typical symptoms of cirrhosis, and now, apart from contant capsule pain ( all round pain within the rib cage), I can manage the others.

Where you told what stage your cirrhosis was at? , as that will have a bearing on the monitoring your cirrhosis will receive. To be honest I just adopted the view that the better I tried to care for my poorly liver, then the better the outcome would be. Please don't get too worried about the 10 years you were told, it's only a guess, and if you behave, it can be a lot longer than that. Maybe your Doc was just trying to scare you, as was mine. I am 3 1/2 years down the road now, and doing OK.

Take care,

David

briccolone
briccolone in reply to davianne

excellent post

davianne
davianne in reply to briccolone

Thank you, much appreciated👍👍👍

David

Millie09
Millie09 in reply to davianne

Fantastic David! 👌🙂

davianne
davianne in reply to Millie09

Many thanks Millie👍👍👍

Millie09
Millie09 in reply to davianne

Most welcome!!! 😁👍

Hi C1J1, welcome .. I agree, it is very daunting when you get told , I was told by my GP in may 2008 , I was so scared, yet I had problems stopping the drink , my dr was useless, basically wrote me off there and then.

I eventually cut back the drink and I was admitted to hospital in the June, where I remained until August,

I'm pleased to know that your no longer drinking alcohol, that is the most important thing of all , I was given 6 months to live, yet I'm still here .

When a doctor says ten years or 5 yrs, I disagree, as no hepatologist can really predict how long we have to live , the liver is one amazing organ, as you know it can regenerate to some degree depending on the severity of the scarring .

May I ask why your GP seems to think its unusual? .. is alcohol the main issue ? .your next step is to be seen by a hepatologist at your hospital , keep away from Google as it's not the best, and by no means a predictor. Please try not to worry, with help and support, especially on this forum I'm sure it wont seem so bad as you are thinking.. cirrhosis is not a death sentence, it can be tough some days , I struggle now with my mobility, but that's another illness I have now..plenty of useful info on here that will help 🤗,I'm 57 yrs young myself and I never thought i would even get to see 50 !! .. take care..Linda x

briccolone
briccolone in reply to Millie09

great post Linda

Millie09
Millie09 in reply to briccolone

Thank you , I do try my best to help 😊..hope your keeping well!

briccolone
briccolone in reply to Millie09

fair to middling I would say....;-) thanks for asking

Millie09
Millie09 in reply to briccolone

Good ! Your most welcome 👍

davianne
davianne in reply to Millie09

Great post Millie!!!👍👍👍

David

Millie09
Millie09 in reply to davianne

Thank you David 😊

Hi and welcome. Firstly-you're in the right place-this is a great forum. All kinds of great advice . I suspect I'm in the same boat as you...4 months dry-not diagnosed yet but have early symptoms :shoulder pain, some joint pain, digestive system all over the place, sporadic itching on lower legs, sleep issues, intolerance to some food additives. poor mood. However-despite feeling a lot worse after giving up alcohol-I wasn't a really heavy drinker either but 64 and overweight., I'm feeling a bit fitter-I've lost 6kgs. I still reckon I have liver inflammation-trying to work out what's causing it. As to your prognosis, I wouldn't dwell on it...easy to say! None of us know how long we've got-cirrhosis is no different to other potentially serious illnesses. I know plenty of people with far worse prognoses and they don't have cirrhosis and far worse quality of life. You've made the right steps to a healthier like. Stick with it. Keep posting -all the best K

davianne
davianne in reply to briccolone

Hi Linda, thanks for sharing.

I have an enlarged liver and a spleen that's twice as large as it should be, because it's taking on some of the functions of my knackered liver.That is the reason for my constant capsule pain.

I've had/have most of your symptoms, plus a few more, but apart from the capsule pain, and resulting lack of sleep, I can manage the rest, so I can't complain.

Isn't it great to be able to help others who are new to this awful disease, and in a desperate place, and needing support?

Take Care,

David

Millie09
Millie09 in reply to davianne

Hi David,

I think we all suffer with one thing or another dont we with this disease, mine is sleep, either all or nothing.. I never know from one day to the next how I'm going to be, hence why its difficult making any plans , I have even dragged myself to the QEHB for my appointment a few times 🙄.

Your doing great by the way , and ABSOLUTELY agree with you that we can help others new to this daunting prognosis

Take care ...Linda

Hidden
Hidden in reply to briccolone

Defo felt worse after detox but it can get better. Think alcohol masked issues before it's sneaky bite back. 🤔

briccolone
briccolone in reply to Hidden

absolutely right...I suspect I had low level inflammation/low level cirrhosis which went berserk after a holiday-oh well....I'm actually jut beginning to feel a bit better now although blood tests tomorrow for MCV/B12/folate will answer a few questions

Thank you to everyone who have replied. All of your information is very helpful. I hope to see the consultant next week to gather some more information. It has all come as a bit of a shock to me and I really don’t understand fully the ins and outs of it all. To be honest I’m really well so feel a bit of a fraud.

This was simply discovered through routine with tests and then scans and fibroscan. I will keep you all posted and thank you for your help. X

briccolone
briccolone in reply to C1J1

you're not a fraud believe me-many folk find out the same way. I had plenty of wake up calls and good advice on this forum which sadly I didn't heed fully enough.

Millie09
Millie09 in reply to briccolone

Hi briccolone ,

Trust me it's not easy !! I know fully well how hard addiction is , regards wether its alcohol or drugs .. mine is now chocolate lol ..

I too have relapsed, and who's to say it wont happen again ? .. I take it a day at a time , your doing great !! Never forget.. 🤗

briccolone
briccolone in reply to Millie09

very nice

Millie09
Millie09 in reply to briccolone

Not very nice to my hepatologist lol.

Millie09
Millie09 in reply to C1J1

Your no way a fraud , when I was first discharged from hospital in 2008 , I was back at work in October, going on holidays etc.. in no way shape or form did I feel like i had just turned a corner from liver failure, other than being very thin at the time of which I'm not any more 😬, that's due to having osteoarthritis in my knee ,hip and lower spine and neuropathy that my mobility is not so good .

I do now however suffer more liver related issues, but what I'm trying to say is dont worry , day at a time..

one thing you may find is that after stopping drinking, there may be other health benefits-you will almost certainly lose weight my blood pressure is now good-my cholesterol's the best It's been for 10 years and no longer pre-diabetic. It's not all bad.....:-)

Hi my wife 57 was diagnosed almost a year to the day she was not a heavy drinker but she was in such a bad way, she was in hospital for 3 weeks and could not even walk she had 5 litre fluid drained from her, when I got her home we decided to do plant based diet for 12 weeks no diary and she lost weight very quickly, she went from around 12.5 stone to around 8.5 stone, she drank around 2 lites of filtered water with a splash of apple cider vinegar she improved very quickly and could easily walk 10000 steps a day I did research and she is on around 21 natural vitamins per day she had a Fibroscan in August 19 and result was a shock it was 47.5 Kpa this is a poor result but under 6 months later she had another Fibroscan 13 Jan 2020 and the result is much improved 23.3 Kpa she as a sauna very day and also I purchased a pulse magnetic therapy mat which she uses 4 times a day this as help with pain management, I truly believe that you can help ourselfs and the plan is to totally cure her although doctors will tell you this is not possible, all her blood results and liver function results are all perfect and she now is very positive that she’s getting better so let’s wait and see when she as another Fibroscan next year.

Best of luck and stay positive

Millie09
Millie09 in reply to popupstands

Fantastic, so pleased for you and your wife, I was very much the same 12 yrs ago .been a very emotional rollercoaster ride , losing my dad to cancer and just recent my aunt to heart failure beside extended family members .

Can be a tough life at times but so so so many inspiring stories on here ,EVERYONE SHOULD BE SO SO PROUD x x

Thanks for reply I lost my Dad to cancer, then my brother to cancer then a few months after my Wife was diagnosed this was last Jan but she is doing very well now

Best of Luck

Millie09
Millie09 in reply to popupstands

Sorry to hear that, but I'm pleased to hear about your wife ! .. my best wishes to you and thank you

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