PBC

My fibroscan result was 38.5 does this mean I'm stage 4?

[Stupidliver]

Yes 38.5 is well into stage 4. with diet , exercise and alcohol abstinence you can improve this score but I'm afraid you have permanent damage.

[Hidden in reply to Stupidliver]

Hi, was thinking maybe the fibroscan was faulty also I don't drink alcohol. Do you think I should get a second fibroscan?

[susieanna in reply to Hidden]

It is probably not due to alcohol then as you do not drink; it could be another reason; have you seen a heptologist?

[Hidden in reply to susieanna]

Yes every six months I have PBC

[susieanna]

i was wondering if it might be stage 3? i know someone who had a result of about 68! but has not been classed as stage 4 as yet, fingers crossed.

[Hidden in reply to susieanna]

Oh that sounds better lol fingers crossed

[birty]

I see you have pbc , when do you see your consultant next? With an autoimmune disease you are probably doing all the right things already and it probably won't make any difference , it does seem a high score and best discussed with your consultant , what about other symptoms ? I think there is a pbc support group on Facebook , I have autoimmune hepatitis and I'm in that group , just thinking that maybe someone has had a similar experience 😀

[Hidden in reply to birty]

Hi thank you for your reply. See liver consultant every six months next app June. He said to make the most of all the good days I could be like this for years or everything could turn to crap tomorrow. All bloods just out of normal range and fatigue is chronic

[RodeoJoe in reply to Hidden]

This is very true. I went 15 years before transplant although initially told it would likely be 5 to 8. In all honesty until I needed a transplant I was in denial, and only worried about things at my 6 months consultancies.

I never even asked any questions so never understood about the various stages etc. I just went from one appointment to the next hoping my bloods wouldn't be bad enough to get called back. I eventually got really bad and somehow slipped through the cracks between appointments because my GP never bothered checking my bloods when I went in with jaundice.

I really do sympathise! My coping mechanism was denial, but when I got worse that denial cost me, because I was almost too ill to be transplanted.

My advise is to try and carry on as normal but don't ignore symptom's like yellowing eye's and bloating. I had fatigue and "foggy brain" for years, probably 7 or 8 before transplant.

[Hidden in reply to RodeoJoe]

Hi like you I never asked questions at appointments just attended and continued working full time. But since last jan have been unable to work due to severe fatigue and constant viruses and infections. Now I ask all questions and want to know everything but don't get any new info When working had money for fun things and no time now got time and no money or energy so depressing

[RodeoJoe in reply to Hidden]

It's really hard isn't it? I managed to stay at work until about a year before transplant, I quit because I was doing self employed contract work and was falling asleep at my desk and in the toilets and quite frankly unable to think straight.

Fortunately I was able to "work" in the family until about 3 months before transplant.

I found the Dr's were not very upfront about work! I really struggled but had a family to support so had no options, fortunately my family were able to support me. But that wasn't easy as only I knew how I felt.

Incredibly stressful times. I do sympathise. In many ways there are advantages to getting sicker quicker.

[Hidden]

Rodeojoe really hard. I didn't quit they just didn't renew my contract. But to be fair I wasn't well enough and doctors wouldn't sign me fit for work. Lost my home luckily my husband works and we just get by. Wasn't entitled to social housing so we live in a caravan at least we own it.

[acjb007]

Mine was 75kpa last Nov 2015 and the same a year before but I'm stage 1.

[Hidden in reply to acjb007]

Wow I'm liking that but how is it possible?

[acjb007 in reply to Hidden]

I have no idea how it's possible but I guess everyone is different. I think you need to ask your gp what stage you are. Good luck on your journey