Please help F4 advanced Fibrosis

[Zobot1234]

So I had my results came back as f4 advanced Fibrosis (cirrhosis ) and it said 25.2 . They said this over the phone to me but I have to wait to next Friday for phone consultation with Consultant. I have not been able to sleep where I’m so worried and anxious . Google has frightened the life out of me as life expectancy says 5-7 years !

[AyrshireK]

Leave Dr Google alone, talk of life expectancies is rubbish. My hubby was diagnosed with decompensated cirrhosis in 2012. He was listed for transplant in 2014 but improved so much he was delisted after 10 months. 2021 still stable and doing well - we've been climbing hills/mountains in the past few weeks.

You can live a long life even with cirrhosis, enjoy and make the most of good days.

Katie

[Zobot1234 in reply to AyrshireK]

Thank u Katie for ur reply . Fab news on hubby as well glad his doing really well xxx

[AyrshireK in reply to Zobot1234]

If your diagnosis is based purely on fibroscan then all may not be as bad as it seems, if for instance your inflammation markers were raised at the time of the scan it can be falsly elevated as fibroscan can't tell the difference between ongoing inflammation and actual fibrous or scar tissue.

Even if it is correct, if they identify the cause of the fibrosis/cirrhosis there is opportunity to improve your liver health or slow/stop progression by either treating the underlying cause or making lifestyle changes that can improve matters.

Learn about the condition so you can make good use of any consultation you have - knowing about your condition means you can ask meaningful questions.

Obviously living with this for the past 9 years we've learned a fair bit (the BLT website is a good place to start) but there are also free online courses available.

Get yourself a folder and a notebook - before you go to a consultation jot down a list of any current medication you are on, a list of any symptoms you are/have been experiencing and a list of the questions you want to ask. The BLT has a page on the patient charter which outlines the level of care you should receive when you have a liver condition and I believe there are useful questions you can ask there too. Jot down the answers to your questions, this keeps consultation discussions on track and hopefully you don't walk away thinking "Oh, I wish i'd asked that!" - when faced with a doctor it's easy to get muddled or sent off tangent. I'd also suggest 2 pairs of ears are better than one so if someone can go with you all the better. My hubby can't attend alone as he has a diagnosis of minor HE and just gets befuddled.

In your folder file away all appointment letters and copies of any reports you get - these will be useful for referring back to or if you need to apply for any benefits if your condition affects your ability to work etc.

As a minimum you should have blood tests 6 monthly plus a scan every 6 months (usually an ultrasound but sometimes more detailed CT or MRI) - this is routine, to check for changes in the liver (lumps and bumps), for signs of ascites, to check portal veinous flow and to check your other abdominal organs.

Having a cirrhosis diagnosis is not all doom and gloom and providing you look after yourself and your liver it can potentially improve or at least you can stop progression.

Here's links to some of the information I suggested.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

Free Online Courses at Future Learn (although you can pay a wee premium to actually sit the end of course test and get a certificate it isn't necessary to pay to just do the course).

futurelearn.com/courses/liv...

futurelearn.com/courses/liv...

If you have any other issues or questions you want to ask, there is a wealth of experience on this site from people who like you have had that initial diagnosis right through people who have had transplants and people like me who are supporting loved ones with the condition.

All the best, Katie

[Zobot1234 in reply to AyrshireK]

Hi Katie thank you for the info and thank u for the insight into how u have both dealt with this . I can honestly say just by talking to u I feel a bit more positive xxx

[idyllic420 in reply to AyrshireK]

Hi Katie... I don;t have an official diagnosis yet! A history of heavy drinking. AST ALT were over 500 and ALP 135 in Oct 2020. In December 2020, AST,ALT below 40 and ALP 132. Last week AST and ALT are around 20 but ALP spiked up 40 points to 172. I have been eating more veggies...broccoli, avocao and Brussel sprouts every day with my meals. I was also doing a smoothie made from celery, beets,spinach,carrot and apple. Cut down sugar drastically and foods like pizza altogether from my diet. A little disappointed to see ALP climbing up. I had a Pizza last night and a brownie few days back! Please advice!

[AyrshireK in reply to idyllic420]

Sorry I am not qualified or allowed by forum rules to comment on blood results and what they may represent. I replied to you on another thread pointing out there were many reasons why you might see a rise in ALP which does tend to go along with more biliary type issues - my hubby has cirrhosis and most of his levels are often fairly normal however a set of bloods he just got done at doctors show his ALP three times the upper limit of normal - this may or may not be due to the fact he currently has numerous gallstones lodged in his bile duct and is currently awaiting and ERCP to get rid of those.

Hope you get to see a doctor soon to discuss your results properly and get them interpreted by someone qualified to do so.

Katie

[Hidden in reply to AyrshireK]

I am so glad to see posts like this. Thank you!!!