Some clarity please!

Like most people who’ve posted here, I was (and still am) creeped-out by my fibroscan scan results in December 2021 of F4 cirrhosis. I’m told I’m well-compensated and haven’t experienced any symptoms or abnormal blood labs except for very high liver enzymes. My question is: does the natural progression of cirrhosis eventually lead to decompensated status?

Dr. Google spits all sorts of reputable academic work that state mean life expectancy of 9-12 years and Child Scores (mine is 5 at the moment) and I know I shouldn’t Google but …

I also had an EDG and stomach US in December all clear, no abnormalities. So, back to my question about compensated —> de compensated as an eventually … can someone enlighten me please and thank you.

[AyrshireK]

No, it's not inevitable that your liver will deteriorate further or become decompensated & there is no way of determining life spans at all in someone with a compensated liver. My hubbies doctor has patients on his books who have had a cirrhosis diagnosis for 20+ years and they are no where near either deaths door nor requiring transplant.

What is important is keeping your liver well, so, tackling whatever caused the damage in the first place - if that's done and the liver is no longer under attack it can even heal to a degree. There are things that can tip the liver over - things like infections etc. BUT it is all about looking after yourself, keeping yourself as healthy as possible, getting all necessary monitoring and dealing with any side effects of cirrhosis.

Live every good day and put the diagnosis to the back of your mind. No one is guaranteed a tomorrow so live every day to the max. No point dwelling on what ifs, just live life to the full.

My hubby was diagnosed with decompensated cirrhosis in April 2012, he was listed for t/p in 2014 but improved so much he was delisted in 2015. He's stable now and enjoys walking and has recently taken up cycling and so far this month has been out doing 20+ mile bike rides every second day.

He lives every good day to the fullest.

Katie

[Hidden in reply to AyrshireK]

Katie, your reply is a Godsend. Thank you!

[Charlie-legs in reply to AyrshireK]

Hi, I needed those words today, because my positive side has been wobbling xxx

[Aotea2012 in reply to AyrshireK]

The positive outlook in life that you describe is so important. I’ve well compensated cirrhosis and because I’m looking after myself with no alcohol, good diet and exercise I feel really well. In fact, much better than I have for years. Who knows what tomorrow will bring....no one, with liver disease or not, is guaranteed a tomorrow. Instead of worrying about it, I try to live life to the full and I swear that attitude has helped to keep me well. Decompensated in March 21, now normal bloods and running 2 miles a day.

[MINTVCX]

Can I ask if your cirrhosis was diagnosed only because of FibroScan result? Any other indication pointed by doctors?

[Hidden in reply to MINTVCX]

Hi MintVCX. Yes, one fibroscan in December/21. I switched to new liver specialist to be closer to home and had it done. Tech who admonished it turned to me and said ‘Your liver is very damaged. F4 cirrhosis’ and that was it.

[AyrshireK in reply to Hidden]

One fibroscan isn't sufficient to determine whether you do actually have cirrhosis. Fibroscan has it's limitations in that it can't differentiate between actual fibrosis and ongoing inflammation - you say you have elevated enzymes and if this includes the inflammation markers then you don't necessarily have cirrhosis at all and it could possibly be a false reading.

You need more tests from your liver consultant to actually establish your diagnosis, if it does end up being cirrhosis then it isn't the end of the world as i've demonstrated already.

Also, dependent on what the reason for the liver inflammation is then the scores for each disease differ - what can indicate cirrhosis for one condition may not be anywhere near for others. Fibroscan score charts show different bars for different conditions.

Katie

[Hidden in reply to AyrshireK]

Thank you again Katie. I’m learning more from this site than a few minutes of questioning the doctor.

[kensimmons in reply to Hidden]

While I have seen the 9-12 years prognosis, equally reputable scientists say it's double that if you Child-Pugh score is at your level (Level A) 15 to 20 years. Remember that means some will live only 10 years but others will live 25 and even more.

I have heard heps say "our goal is to make sure you die with cirrhosis not because of it" and that is certainly very possible.

As medicine improves, expectancies keep growing at a good rate. Cirrhosis is not a death sentence.

Child Score Life Expectancy

backtable.com/shows/vi/tool....

[Hidden in reply to kensimmons]

Thank you Ken. It’s challenging not to drop down the life expectancy rabbit hole when left to own devices.

[Hidden]

Typo in previous post. Should read as administered not admonished.