Further update on my oartner

[Bibbs]

It’s been a month since I last posted, so I thought it was about time I gave you all a further update on my partner (43 year old male diagnosed with decompensated ARLD back in June 2021). Today he had his first face to face appointment since November 2021 with his consultant. While we were there, he had his first fibroscan, in which he scored F3. The nurse explained that this equates to fibrosis rather than cirrhosis, which may be reversed if he continues with his diet and abstinence from alcohol. Also, his consultant now believes that he has been suffering from acute alcoholic hepatitis, and that his symptoms (portal vein hypertension, ascites, edema, varices) have been caused by that rather than the presence of cirrhosis. I suppose this would fit with the fibroscan score, but until now I have understood that decompensated liver disease and cirrhosis went hand in hand.

Whilst he was at the at the hepatology unit a couple of the nurses commented on how much better he looks. Obviously he appreciates the compliments, but it got us talking about how people don’t understand the nature of his illness, the fact that he has bad days where his joints practically set and he suffers aches, pains and tiredness, and that even his GP doesn’t seem to understand the challenges that he faces. I was wondering whether any of you guys also have faced difficulties with GPs, benefits assessors and others when trying to explain the symptoms of liver disease.

[pushthrough]

Hello Bibbs, that's interesting that he has portal vein hypertension, edema and varices and they put him in the F3 category. Personally I have never heard of decompensated fibrosis/f3. I know specialists consider a variety of test results, not just a Fibroscan to get an idea of the category. However, it is my understanding that when you have all the things listed above it's usually an indicator of Cirrhosis. I'm 39 and have all of that except edema/ascites. When I was in the hospital they diagnosed me with Alcoholic hepatitis and was told I could reverse the damage if I stopped drinking. However when when I went to a liver specialist was told I had Compensated cirrhosis. I quit drinking immediately after I saw the Dr. in the hospital too.

However, I'm not a doctor and if the liver specialist said he has F3 then that's what he has and he should consider himself very lucky. I hope that he is able to continue reversing the disease by following the specialists advice. By the way, almost everyone on here will tell you it's a misconception about how someone looks. Many of us look great and you can't tell we have cirrhosis. My regular GP says it all the time to me that I look great but I'm extremely good looking and get looks everywhere I go from women and men. LOL, kidding about that last bit.

G.

[Bibbs in reply to pushthrough]

Hi pushthrough, thanks for your reply. Just to clarify, he had portal vein hypertension, ascites and edema back in July/August, but the inflammation has gone and so have these symptoms, and his consultant expects to stop his diuretics once he’s had an ultrasound scan next week and she’s confirmed that he’s not retaining any fluid. At the time of his diagnosis back in June, his consultant told him that he had suspected cirrhosis but it appears that now that his inflammation has gone down, they’ve been able to properly assess the stiffness of the liver through a fibroscan. In addition, he’s had the usual liver function blood tests numerous times over the past 8 months, which show that pretty much everything is now back within or very close to normal limits. His consultant also told him that in her experience she’s seen people recover to the extent that they’ve managed to get their fibroscan score well down. It gives us some renewed hope.

[pushthrough in reply to Bibbs]

Hello Bibbs, that is excellent news!!! It sounds like your partner is extremely lucky because f3 is reversible. I had all of those symptoms and they went away after a week and I still went over to the scary side.

[Bibbs in reply to pushthrough]

Hi pushthrough, he’s worked very hard to get here and it sounds like you’re equally determined.

[Smegmer]

This is very good news ! Still at F3 which could be because of the Hepatitis. He may have dodged a bullet ! It would be great if he gets another Fibroscan in 6months and its at F2, that's the goal from here.

Soon he should start to feel better, but its needs to be clear to him that he cant pick up a bottle again.

[Bibbs in reply to Smegmer]

Hi Smegmer, thanks for your reply. He definitely won’t ever go back to drinking, that’s for sure. He won’t actually believe that it’s fibrosis and not cirrhosis until he’s had another fibroscan in a few months time and the result is either the same or hopefully better.