decompensated cirrhosis?

I've been diagnosed with hep b liver cirrhosis by likely vertical transmission since 2015. Hep B i've known about since age 19 some 40 years. Since then i was put on Tenofovir but it was causing side effects namely Proteinuria so now i've been put on Baraclude ( entecavir) about 1 month, seen consultant last week to see if these were ok and now says i likely have ammonia in my blood so has prescribed lactulose also. Does this mean i am going from compensated cirrosis to decompensated cirrhosis. I am also now sleeping 14-15 hours a day and very fatigued. I am worried this seems to be progressing quite fast and feel i don't have many years left in me, only in 2014 they said i had hep b and a bit of a fatty liver no cirrhosis. I'd appreciate any comments.

7 Replies

  • Oh dear, i've had Hep B for 40 years and was untreated until about 6 years ago when i was like you put on Tenofovir, but like you after a while it has started to cause kidney problems (a common side effect apparently) and I may have to switch to Entecavir. It hasnt caused protein or ammonia issues for me, just reduced kidney function.

    I have compensated cirrhosis Childs Pugh A, and seem to be stable. Have you ever had a Fibroscan? They are good at being a non-invasive check on how 'stiff' or scarred your liver is. How are your liver function blood test results, if they are at all abnormal your hepatologist should be acting on improving things.

  • thanks for replying bolly, yes i've had a fibroscan F3 - F4, 12.8kPa CAP value 380 perormed in march 2015. I have not been told any Childs Pugh score. in May 2016 my ALT was 6 and i only know my creatnine? level was 60.

  • My fibroscan on diagnosis was 12.3kpa so similar to yours. An ALT of 6 is well within normal range, in fact very low, mine is usually in the upper 20s though i do have another liver disease (AIH) causing inflammation. Your creatine is also in normal range.

    There may be something else going on. I would suggest asking your consultant or your GP for a better explanation of your blood test results and a better explanation of where you are liver wise. Prescribing Lactulose on a 'likely' rather than a definite test result is a bit vague.

  • I was infected with Hep Bin 1979 and it was also left untreated until 6 years ago . I take tenofovir and it has suppressed the virus. I have known about the the cirrhosis for 10 years when a scan prior to my gall bladder removal showed the fibrosis . I has taken a few years for my cirrhosis to become de-compensated . I progressed through the various stages , varices, one bleed , 3 bandings , portal vein thrombosis , acute kidney injury , massive weight loss and have now been assessed for liver transplant ( going on the list) I bad leg and hand cramps and have an ascitic drain every 10 days usually 12 or 11 litres. The fatigue has always been the great problem along with the inability to lose weight and the loss of muscle mass ergo no strength. I know how concerned you must be , for me the greatest help has been knowing what is happening to my body and the knowledge that there is a solution especially if caught in the earlier stages. I try not to second guess what is next in the progression and when it comes try to be thankful I am one of the lucky ones who no about it before it is beyond help. I hope for you that thinga are not as bad for you but try to remember knowledge is strength. I wish you well.

  • thanks for your reply Andy, yes i have bad fatigue but from 1992 i was diagnosed with M.E. so i understand your fatigue but it did improve for a number of years allowing me to live and work but since 2012 i have felt much worse, with the ME i was drained but this is sort of different? (I must be super- sensitive as i feel everything that's happening in my body long before the hospitals ever find anything). What hospital are you under, i am with Leicester Royal?

    I'm so sorry you've already been through some awful stages and yes i agree it is important to know and understand what is happening as it helps to keep things in perspective. I'm so glad you're being put on the transplant list and you remain positive.

    It's good there is this forum as there is such good advice and knowledge from everyone. Bolly is very good with her knowledge and answers everyone quickly. It helps a lot as when you see your consultant you don't question until after and then you've another 3- 4 months to wait. I'm sure like everyone else it's quite difficult to get to see your G.P and then they just say you'll need to speak to your consultant!

    I wish you all the best Andy and Bolly and thank you.

  • Interesting to learn how differently we respond to the Hep B virus. Andy and I should be the same - had the virus for the same time, had the virus un treated for the same time, been on treatment for the same time. But Andy is de-compensated and I am compensated (despite having progressed to HCC cancer on one lobe of my liver 5 years ago, and despite ongoing attacks and inflammation from my immune system as i have AIH also). So what has made a difference? Lifestyle, genes, diet? Or just luck? I was advised 5 years ago i may need a transplant in the future, but have since been pretty stable, thanks to the good care and careful monitoring by my GP and hepatologist. I have blips - i contracted Hep E in 2013 which had me back in hospital, and have had a few viruses and infections which have elevated my readings, but nothing that hasnt resolved itself. I still work, although part-time, and find my fatigue has lessened and stamina improved by daily exercise (I walk dogs for the terminally ill via a charity called the Cinnamon Trust).

  • yes i agree Bolly. We three all have had Hep B about the same time and all have varying symptoms. I agree it would be interesting to know what factors play a part in this perhaps someone should do a research study. Of all three I think i have probably come off the best so far .

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