Hi.
I'm a first timer on this thread, although I have posted on others about alcohol. I decided to post on this thread today, as I've just come back from the hospital, and thought that sharing my experience might be of use to others 'on the wagon'.
I was diagnosed with cirrhosis nearly 7 years ago, and gave up drinking immediately. I have had regular appointments with consultants, liver nurses and GPs since, with LFTs, ultrasounds and endoscopies (to check for varices). All of that is good, particularly as it was free and I brought it on myself, but at no point did anyone tell me anything concrete, such as if my disease was improving, progressing or stable. I've struggled to get travel insurance and been anxious about the future, as cirrhosis is progressive and ultimately fatal. As I already have health anxiety I've had some bleak moments. Anyway, after the first couple of weeks, I didn't find giving up drinking too difficult. I carried on going to bars and kept the same friends, but stuck to soft drinks. I did leave a stressful job, which made it all easier, as a lot of the time I was drinking with colleagues after work. I set up routines to change the habit of drinking in the evenings, switching to AF wine, pouring it into a wine glass, making going to bed sober as pleasant as possible, to get me used to not being sloshed when I fell into bed.
I've always felt really ashamed of having cirrhosis. I haven't told anyone except my husband, and even then only after a while. I struggled to say the word, and talked vaguely about liver disease. I hate having to declare it when I went to the dentist and so on - even the podiatrist has a list of conditions that you have to declare, and whilst I understand that they need to know in case of bleeding etc, it's humiliating, as so many people look down on those with 'self-inflicted' diseases.
Anyway, I went for a check-up appointment this morning, and insisted on a fibroscan. The liver nurse said they aren't routine in this area, and that they only work on 'compensated' and 'decompensated' diagnoses - in other words whether the liver is working or struggling - and mine was compensated, but could become decompensated, which usually happens after 10 years or so. This wasn't good news, as I am 7 years in! She also said that the difference between fibrosis and cirrhosis is technical, as both are liver disease, and having a 'score' wouldn't change the reality. I pushed, and said that it would help my anxiety to have a baseline, and if I had another one in a year or two I would be able to see any progress, and also that whilst it might be a technicality to her, it's not to an insurance company. She agreed, and I had it done there and then.
Drumroll. . . . I no longer have cirrhosis (or it wasn't there in the first place) but fatty liver/fibrosis!!! There are four possible scores, with 4 at the top and 1 at the bottom, and mine was a low 3. If I am strict with my diet and get more exercise (I'm not great with either) there is a good chance that I could get it to a 2. I am both surprised and delighted by this news, as I'm sure you can imagine.
I'm posting partly as I can't text everyone I know with the news and I want to share it, but also to encourage anyone who is struggling to abstain, and to suggest that if you have been told you have problems you need to get a fibroscan, not just an ultrasound. The woman who did the fibroscan said that moderation won't reduce the numbers - you have to give the liver a total break from alcohol, so please bear that in mind, too.
I'll happily answer any questions if people are interested, but the main thing is to remember that where there's life there's hope and not to be discouraged even if the news is bad.