Reaching Out

[NFCowner]

Hi everyone 👋 I’m a new member and hoping to understand more about cirrhosis, my diagnosis and what it means going forward. Long story short - I was admitted to hospital in May 2022 with a decompensated liver and highest rating of 75 kPa and cirrhosis. I was discharged after a week (and after the shock of my life) I changed my eating and drinking habits there and then. One year later my fibroscan showed kPa of 57. The hard work continued … healthy eating including a high protein diet, complete abstinence from alcohol (I don’t smoke). I had my last scan this week and my kPa has reduced to 33, all my bloods are great and my bilirubin is at 21. My liver has no fat per the scan and my liver is in a compensated state.

It’s taken me a while to reach out and find out more until now as I’ve spent too long looking at internet results and one day worrying sick and then trying to maintain a rationale mind the next! I know i will always have cirrhosis but can anyone share some of their experiences and outlook? I don’t know what to expect in the future but one things first sure I’m doing everything I possibly can to make sure that’s as long as possible!

Thank you for any words of wisdom 💖

Good thoughts to all 🙏

[AyrshireK]

Sounds like you are doing brilliantly and keeping that liver in check, hopefully you can live a long and healthy life even with cirrhosis - hubbies consultant constantly told us he had patients on his books who'd had cirrhosis for 20+ years who were not at deaths door nor transplant needy.

Certainly my hubby having gone from an initial decompensated state in April 2012 bounced back to a degree to live a life (albeit at times pretty rubbish) but still managed to get out walking, cycling etc. I was only this time last year that his health deteriorated significanly and he has gone on to have a (hopefully) successful liver transplant in June of this year.

There was nothing my hubby could do to stave off his deterioration (auto immune condition) but with your own lifestyle changes you may potentially stop any progression and as you've seen already you can reverse some of the damage done.

I've frequently likened life with cirrhosis as like riding a roller coaster. There will be ups and there will be downs and you just have to ride it. Make the most of the good days, listen to your body, rest when you need to, write off any cr*p days.

All the best, Katie

[NFCowner in reply to AyrshireK]

Hi Katie, thank you very much for getting in touch and your words of advice. I hope your hubby is getting on ok with his transplant. The same message I hear is that everyone is different and i think your liking it to a rollercoaster is very apt. It’s a welcome to hear a message of support. Only a few family members close to me know about my diagnosis and I haven’t plucked up enough courage to talk about it without a stigma attached so I welcome the open and honest platform I hope this is. Thank you again ☺️

[BritishLiverTrust14 Moderator]

Dear NFCowner,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 4pm on 0800 652 7330 (excluding bank holidays).

We also facilitate a range of virtual support groups for people living with a liver condition, their families and carers. If you would find it helpful to speak to others with shared experience, you can register to join a group here:

britishlivertrust.org.uk/vi...

Best wishes,

British Liver Trust

[NFCowner in reply to BritishLiverTrust14]

Thank you for recommending this group and contact details for your helpline. I will certainly register.

[0range5520]

Hello,

What you have done so far has been incredible and your results are reflecting this, I totally get the emotional ups and downs of having some knowledge but having the rational of putting things in perspective to your case.

Someone once said (and I know it’s a cliche) accept what you can’t change and change what you can., That’s exactly what you’ve done. I found the acceptance part so difficult doing an incredible about of googling which sent me round in circles.

Personally the true life experiences of the people here are so reassuring, motivating and factual. I also think in a way im lucky to know as it was found by chance, probably many people aren’t that lucky.

Carry on and I wish you all the best

[Breakfastbabe]

Congratulations on everything you have done to keep your liver healthy. This is a very supportive group so if ever you need a boost it's a good place to come. My cousin's husband lived 15 years after being at death's door. He passed away this year from a totally unrelated issue. So just keep doing what you are doing.

[Readlots]

welcome to the group. There are lots of people on here who have turned their lives around and are doing well just like you. My Mum had an autoimmune liver disease. When she was diagnosed there was no treatment and she was told she had 2 years. By not drinking, eating healthy and avoiding chemicals where possible she lived over 20 years and died aged 75 having seen 5 grandchildren grow up. Keep up the good work and hopefully you’ll live a long and happy life

[lonmallin50]

You have done very well done everything right to give up everything like you have is very good, most people go on to live a happy not even realising they got it. Just keep doing what your doing and your be fine. I was not so lucky when i found out i had cirrhosis it was to late for me my liver was to damaged had a transplant last oct last year never felt better in all my life good luck with everything Lon

[LilacPoppy]

No other word for it, CONGRATULATIONS 🎊