Terrified and nobody to find out more information

Hello

I am so glad to find people to share with

4 months ago after having a CAT scan for unrelated issues Cirrhosis was detected and told to me by a consultant in a corridor in the local hospital

I was totally panicked and insisted on seeing a Heptogist which I will eventually see next month

As I was in a private scheme I saw him in March he felt the Cirrhosis was incidental on the Scan as the Liver function and blood tests were normal and my Liver was functioning normal.

He had arranged a fibroscan but felt it was pointless but I had anyway for peirce of mind (it found scarring on my Liver)

He sent me an email informing me and said as my Liver and blood tests were good he wasn't concerned and would see me next month

I haven't had a drop of alcohol since early December but haven't slept a night since

I am terrified at the moment

[AyrshireK]

Hi there, if your bloods are normal but CT scan and Fibroscan have identified cirrhosis then it shows that your liver is in a well compensated state i.e. it is coping with all the important jobs it has to do. If alcohol is the issue that has caused your liver to become scarred then complete abstinence is the way to go. There is a chance with alcohol related cirrhosis that stopping the assault on the liver will halt further damage and there is even the possibilty of reversing some of the scarring.

Cirrhosis isn't necessarily a death sentence, it is something you can live with and it's good that yours has been picked up before it has become symptomatic.

My hubbies wasn't picked up until he was almost at deaths door - that was in April 2012. At the stage his was identified he was yellow, bleeding from varices and very seriously poorly with deranged bloods and many other symptoms. Now in 2021 his is pretty well compensated and he walks every day and is doing 'ok' in the grand scheme of things even lately walking some 15 mile days. (ALL IS NOT LOST!)

Now you have a cirrhosis diagnosis it will need to be monitored. Usual protocol is a 6 monthly ultrasound and 6 monthly bloods plus an endoscopy every so often just to check for changes in the gastrointestinal tract. My hubbies consultant has patients on his books who have had a diagnosis for 20+ years who are nowhere near needing transplant nor horrendously poorly.

From now on it about looking after your liver.

The BLT website has lots of good guidance. Educate yourself about the condition so you can pick up signs of potential deterioration so they can be acted upon quickly. If alcohol IS the cause then abstience it VITAL (it needn't be the cause though - hubby is life long t-total and the cause of his is auto immune illness). It sounds like doctors are doing the right tests and stuff but incase you need it BLT also has a patient charter about the level of care you should receive together with good questions to ask.

Prior to us going to clinic we make a list of current meds, current symptoms and all questions we want to ask doctor. We make a note of the answers so we make the most of appointments and don't leave with unanswered questions. You need to be proactive and take charge of your own condition. The more educated you can be the more pertinant questions you can ask of doctors, some don't volunteer information unless you probe for it.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

If you want to ask further questions and we can help further then fire away, always someone here who has been in your shoes or supported someone in them.

All the best, Katie

[Hidden in reply to AyrshireK]

Thank you Katie The only symptoms at present are fear related and I will never drink a drop again.

It is such a lonely time at present with Covid and I dread the Hospital on my own.

I am so glad your husband is keeping well x

[Hidden]

Hello,

AyrshireK has explained everything (thanks Katie) - I would simply add , you can call our specialist nurse led helpline on 0800 652 7330 Mon-Fri 10am -3pm and we would be happy to chat things through with you.