New and scared: I am newly diagnosed and... - British Liver Trust

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New and scared

RachaelLouise35 profile image

I am newly diagnosed and very scared and confused!

I was rushed into hospital with infected acities, they did a liver biopsy which came back abnormal, they intubated me and put me on the ventilator and transferred me to a specialist liver hospital, kept me under for 5 days while they did tests, I was told I had NASH then I was told its Fibrosis then the last doctor I saw said its Cirrhosis.

She said its advanced Fibrosis so we are treating it as Cirrhosis. I had an ultrasound scan a few days ago and the tech said that the liver is enlarged and very corse but doesn't look quite like Cirrhosis.

I read on Google that the average life expectancy for someone with Cirrhosis is 9-15 years, I am absolutely terrified I am going to die and leave my children without a mummy 💔

I feel like I have been handed a death sentence 😔

9 Replies

Hi Rachael, first of all welcome aboard the forum just sorry to hear of your diagnosis, however, all is not lost at this stage nor have you been handed a death sentence. Don't go looking up life expectancy stuff because every single case is individual what is important now is getting to grips with what has caused your liver damage and dealing with all the side effect symptoms as they arise.

If you've had ascites it would kind of corroborate the doctors who have said it's cirrhosis as ascites tends to be a symptom of decompensated cirrhosis so you've obviously been quite poorly.

Are they saying the cause of your condition is Non Alcohol Related Fatty Liver Disease/Non Alcoholic Steatohepatitis (NASH)?

If this is the case then you perhaps have some lifestyle changes you need to make to get the attack on the liver under control. NAFLD is the fastest rising cause of liver disease in the Western World due to our poor diet and mostly sedentary lifestyle together with some medications and other conditions that can go hand in hand like diabetes etc.

The BLT has a wealth of useful information and guides on Cirrhosis, NAFLD/NASH and loads more.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

My hubby presented with cirrhosis in April 2012, completely out of the blue and with decompensated symptoms - he almost died from a massive variceal bleed. In 2014 he was assessed and listed for transplant and 10 months later had improved sufficiently to be delisted. We are now 6 years further on from his listing and still going strong - ok he's not 100% fit and has issues but he makes the most of good days and lives the best life he can. Hubbies liver was damaged by an auto-immune illness of the liver which sadly did it's damage unseen and therefore unable to be treated.

He receives the appropriate monitoring i.e. 6 monthly scans, bloods and an annual endoscopy and being in touch with the doctors at the transplant hospital we trust that if the need re-arose for transplant listing he'd be re-assessed and listed if appropriate.

Remember, transplant may become an option for treatment in your own case so all is not lost.

Get to grips with what has caused the attack on your liver, if you can do that you have a chance of stopping further progression of your condtion and possibly also reversing some of the damage.

Best wishes,

Katie

Thankyou for your reply. I'm still not 100% sure what has caused it to be honest, they said my liver was very fatty but they also said there is evidence of alcohol damage on the biopsy, but I haven't had a drink in over a year.

Pleased to hear your hubby is doing well xx

Alcohol and NAFLD do the same thing in effect - building up fat in the liver which then can cause inflammation leading to fibrosis and cirrhosis. The way to slow down/stop any progression is the same really in that you need to live healthy, healthy diet, exercise and of course remain off the booze.

Guidance for both is really the same though I don't like to assume that any liver damage is alcohol related - hubby is life long t-total and still got cirrhosis.

All the best, Katie

Trust1 profile image
Trust1Administrator

Hi and welcome Rachael,

You have had a great reply from Katie above. If you are in the UK and want to chat about this, our nurse helpline is open Mon to Fri 10am to 3pm on 0800 652 7330

You are not alone.

Trust1

Montys profile image
Montys in reply to Trust1

💖

Is there an email service I could use I prefer writing it all down, I get myself across better that way.

Hi Rachel, I received my Fibrosis scan result last Monday, I also am scared as heck! I’m expecting a Dr call tomorrow and awaiting an appointment to see specialist at hospital. Have had some minor ascities, which I managed to control. I’m only one week alcohol free, very frightened and also have been googling madly. I see from one reply, all is not lost, also, there are newer studies showing that we can at least halt further deterioration. So I’m working with that idea. Please be well, I see lots of support for you here.Dolly1001

Hello Rachel! You do not have an expiration date on the bottom of your foot. No one can tell you what your future will hold. Just know that all is not lost regardless of diagnosis. You got this and your babies will not be without a mommy. Many here have given you wonderful advice. Real advice. Don’t Google. Your life, your health, your determination to stay healthy, your odds, your bright future WILL NOT be found on Google…because you are unique and one of a kind. Live life and keep on keeping on. All love.

Please its not a death sentence,you can beat this with no alcohol, salt and good nutrition.im so sorry.ive had chirrosis since 2013,I had fluid everywhere,and had H.E.my lfts are fine now I promise you.stay strong!🌹

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