Fibroscan and endoscopy

[skay1957]

I have NASH cirrhosis. I had a Fibroscan and it was 24. I then had endoscopy which showed very small varices that compressed out. I had these tests to see if I qualified for a clinical trial in USA. Because of the small varies I don’t qualify. I feel fine. My blood work is all normal, even platelets are normal. The hep doctor even says I don’t look sick. How can I have a 24 and not be sicker. Deep down in my heart I know I have this and I am waiting for the ball to drop. That’s what is so frightening, not knowing when I am going to start feeling like I have Stage 4 cirrhosis. Any recommendations or wisdom.

[bintcliffe]

Hi Skay

I too have stage 4 Liver chirrosis compensated my fibroscan was 19 I was diagnosed 18 months ago and to look at me you wouldn't know I tend to take every day as it comes.

I wish you well.

Hayley xx

[Popel in reply to bintcliffe]

Stage four -decompansated means there is little or no chance of recovery the only option left is usually only a liver transplant.whereas a compensated liver has a chance of improving.having stage four you’d definitely know.with a limited time left unfortunately.after having little or no symptoms until my first of four bleeds five years ago the clock was ticking which resulted in me having to go sick in work in Nov18 and being transplanted three months later.x

[AyrshireK in reply to Popel]

My hubby was stage 4 decompensated on diagnosis in April 2012 - massive bleed with 7 burst varices and could have passed away, however, medical interventions and 42 banded varices later he is back compensated and considered stable. He was listed for t/p in 2014 but delisted after 10 months as he stablized so improvements without transplant is possible, however, he might still need one in the future.

[Popel in reply to Popel]

Ps.up until my first bleed the symptoms I had were large swollen red,really red hands with tiny red spider veins.also I suffered with really bad cramp but only in the summer so ignored it and put it down to sweating as it was only when I’d been working.but one of the things I did which I can’t believe I’d do to aliviate the cramp was to drink salty water.which actually got rid of my cramps.also intense leg itchiness is another symptom to look out for.

[Hidden in reply to Popel]

Popel,

We appreciate your contribution to the forum.

We would absolutely not recommend that anyone with a diagnosis of liver disease drink salty water.

Anyone having problems with symptoms of liver disease should consult with and follow the advice of their GP or hospital consultant.

Volunteer moderator

[Popel in reply to Hidden]

I know that. I was saying how before I was diagnosed how I was told to drink salty water to get rid of cramp.im not endorsing the drinking of salty water I’m saying how detrimental to someone with cirrhosis that it is.😁

[Hidden in reply to Popel]

Hello,

Good to see your post saying how detrimental the drinking of salty water would be to anyone with cirrhosis. Not to be recommended for anyone at all in fact with or without liver disease.

[Popel in reply to Hidden]

Yes I know in replying your trying to reinforce the message in which I had already said in the first post.surly anyone with anything about them would of got that from said post.but thanks😁

[AyrshireK]

You don't have stage 4 cirrhosis if you are relatively symptom free. You might be getting wires crossed. There are 4 stages of Fibrosis and F4/Stage 4 fibrosis = cirrhosis. Some folks get fibrosis and cirrhosis stages mixed up.

Cirrhosis is split into 4 stages too.

The first two stages are considered compensated where the liver is coping with the majority of it's important jobs. Stage 3&4 are considered decompensated when the liver is really starting to struggle.

Stage 1 Cirrhosis - Defined as compensated cirrhosis with No Varices and No Ascites.

Stage 2 Cirrhosis - Defined as compensated cirrhosis with Varices but No Ascites.

Stage 3 Cirrhosis - Defined as decompensated cirrhosis with Ascites +/- Varices.

Stage 4 Cirrhosis - Defined as decompensated cirrhosis with Bleeding +/- Ascites.

A compensated liver can go on for years and might never become more damaged or decompensated.

As you'll see from the above stages with varices but no ascites then you arn't at stage 4 cirrhosis.

Live life to the full whilst you are feeling well, you might never get worse but cross that bridge when/if you come to it . Keep an eye out for symptoms and make sure you receive timeous treatment.

Learn about cirrhosis and it's symptoms so you know what to look out for and make sure you eat appropriately and look after yourself going forward. The British Liver Trust has a good page on cirrhosis and another on living with liver disease which are both good.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

Katie

[skay1957 in reply to AyrshireK]

No one has ever explained this to me like that. I was told it was early but then told also that it was stage 4, so does that mean stage 2 cirrhosis (stage 4 fibrosis) since I have very small varices and no bleeding? Its confusing. I had an EGD done a year ago and basically the EGD done Thursday had not changed, still small varices. I really want to understand this. Kay

[AyrshireK in reply to skay1957]

If you have cirrhosis then yes you are stage 4 or F4 fibrosis also sometimes labelled end stage liver disease (this doesn't mean you are at end stage of life it just that you have reached the last stage of liver disease).

Based on symptoms your liver is compensated and at the highest based on your current symptoms then yes - stage 2 cirrhosis.

My hubby at diagnosis (in April 2012) was stage 4 cirrhosis - bleeding varices but without ascites. Now almost 7 years later he's back at stage 1 cirrhosis (no varices and no ascites). He is stable and whilst not 100% symptom free he is doing well in the grand scheme of things.

Look after yourself and your liver going forward.

Katie

[bintcliffe in reply to AyrshireK]

Hi Katie

Then I must be stage 1 then no wonder my GP can't confirm it she probably doesn't know it's so confusing. Xx

Thank you 😁😁

[AyrshireK in reply to bintcliffe]

Are you under the care of a hospital consultant bintcliffe? After having had the symptoms you've had previously you should now be under the care of a hepatologist or at least a gastroenterologist.

Your cirrhosis needs to be monitored going forward in case of any deterioration.

Katie

[bintcliffe in reply to AyrshireK]

Hi Katie

I'm under a consultant and neurologist had a stroke when I had the organ failure my GP runs liver tests in-between consultant appts my symptoms are nearly all neurological.

Thanks for the reply.

Hayley xx