Update

Finally had a catch up with the specialist after two and a half yrs!! Saw a new Dr and she said that that she is 99% sure that I haven't got cirrohis!!!!! She has arranged for an ultrasound, which she herself will perform. I HAVE LIVED WITH THE GUILT FOR OVER TWO YRS THINKING THAT I HAD SLOWLY KILLED MYSELF!! I have suffered from depression, came out of a relationship because I didn't want him to go through seeing me die slowly, have not worked and abandoned my dreams. I don't know if I'm happy or extremely annoyed. I lost my career and confidence.

40 Replies

oldestnewest
  • HI

    If you could explain a bit more about your history, how much were you drinking etc? how were you diagnosed? Does the current doctors have the records from your original diagnosis ?

    My fingers are crossed for you, but you could be very very lucky here. Acute Alcoholic Hepatitis can present with the same symptoms as Cirrhosis. It is possible to fully recover from Hepatitis ! You could well have a fully healed Liver!

  • I was rushed to hospital with ascites and told that I had 2-5 yrs to live. I wasn't drinking a lot but I was drinking regularly. My GP told me I couldn't tolerate alcohol. I have gone from child's pugh C to an A?? I was lost in the system and have not been seen since the diagnosis. I haven't drank since either.

  • That's interesting. I never new that alcoholic hepatitis without cirrhosis can cause asites,  varicose veins etc. This does explain how some people have said they've made full recovery from these symptoms, because I never understood that. 

  • Yes it can indeed. I remember a famous one, Tony Curtis was once rushed to hospital with bleeding varices. It was reported at the time as Cirrhosis, but he lived another 30 odd years after that, he recovered and died of something unrelated , lungs or heart I think.

  • Yes but the cirrhosis caused the bleeding varices. His cirrhosis may not have killed him but it would have still been there.

  • He didnt have Cirrhosis is what I was trying to explain, he had Acute Alcoholic Hepatitis

  • According to WIKI which I acknowledge isn't always 100% spot on but it explains he did have cirrhosis due to alcohol and cocaine addiction.

    "In 1984, Curtis was rushed to the hospital suffering from advanced cirrhosis as a result of his alcoholism and cocaine addiction. He then entered the Betty Ford Clinic and vowed to overcome his various illnesses."

  • Yeh I know, But he didnt have "advanced cirrhosis" he wouldnt have lived for 26 years and also had a heart operation in 1994. He had Hepatitis

  • I can understand you're annoyed but trust me there are plenty of people on this site who dream of getting news like that.

  • Of course!! My point is that for nearly 3 yrs I've believed I've been on borrowed time. I have been told that I'm unfit for work etc. Even my gps thought I had cirrohis. I'm ecstatic but I'm also angry because I've wasted so much time.

  • Yeah I really appreciate that. I know you know what I'm saying too. But now you do at least get the opportunity to rebuild your life.

    I also don't really understand what happened to you. You went from child pughs c to a without treatment? Do you have any idea of the cause?

  • All I was told was that it could have turned either way for me when I was admitted and that I was a very poorly girl. My GP was giving me 3 month sick notes and then i got put on ESA which I then lost at the meetings they do to assess you. I went back to my GP and asked if I was fit for work and was told to appeal the dwp decision and he wrote me a supporting later and I won my appeal. He did chase up my follow up which is what this outcome is. I'm as confused as you my friend xx

  • rejoice in your news and go from here...none of us can change what has been..... as far as losing confidence not sure how old you are but i lost my edge when i went thru menopause...

  • I'm 42. I am ecstatic but I'm also angry xx

  • Deb, you can't do anything about the time you've lost. You can't go someplace and buy it back. I spent two years at two different hospitals telling me I didn't have cirrhosis. I could have done something at that time if I had of known I did have it and avoid it going untreated and getting worse to where I needed a transplant and almost died. Point is as much as I beat myself up now, I can't change what happened, and so I can only do something about what today holds, and tomorrow and beyond are my story yet to be written by me. It is sad but hopefully Deb you don't have any cirrhosis and you can get on with deciding the best way to enjoy the rest of your life.

    Good luck with everything.

  • Thank you for your reply, it's greatly appreciated and I hope you are well xx

  • Hi Deb that must be so frustrating for you, I was just wondering if you had a liver biopsy as most doctors do this as a total confirmation of cirrhosis diagnosis. There seems to a amazing discrepancy in diagnosis and treatments for liver disease it's luck if the draw where you live it seems and if your hospital has a dedicated liver department and a well informed GP (few and far between) I also have to keep ringing consultants secretary to chase up appointments, I'm currently waiting for one I was due in Feb! I hope you manage to get over this maybe you will get some answers from your consultant after your scan. Try and be a bit pushy and make sure you get it soon.

    Good luck 😃

  • Hi, I did have a biopsy but this specialist says that I never. I still have a small scare from it!! I was even a lab rat for the student Dr's who came to see me and ask questions every day!! This new specialist will be doing the scan herself and said there would be a 9 wk wait. I do need to speak to someone to get over it as 2 of the people I kept in contact with while in hospital have passed away. It's been like waiting for lightning to strike.

    many thanks for your reply

    Debs xx

  • You poor thing you've been messed about, I'm sure you'd know better than them if you've had a biopsy!!! They've prob lost the results. Keep positive. Thinking of you. 😊

  • Ahhh, thank you xx

  • Wow.

    But I've got to ask, with a diagnosis like that, didn't you find it odd you were not seeing specialists, having proceed res of any kind done?

    You said your GP knew also, but SURELY they would know about all the specialists, medications, hospital stays etc?

    I just find this all so weird.

    You had ascites? Did you have a drain? Ascites is one of the decompensated four, or, one of the four major issues that are cased by cirhossis.

    And didn't you think it was weird you weren't actually getting sick? Lol. Like, you weren't dying? I mean, when I got sick, I knew it. I felt It, everywhere.

    Have you been a member of this site for a while, or no? I only ask because you must have been confused hearing all of us chat about our appointments blood levels, etc.

    you did not wonder about the transplant list?

    I'd sue. Really. There has to be a record, especially if your GP knew also.

    I'd call my ex, and I'd start rebuilding my life and focusing on my dreams.

    Forgive the questions, I'm just so baffled by all of this!

    Cheering you on!

  • Yes can I second that. I said in a previous thread that there are a few people that are saying they've gone from ascities, varicose veins etc to no cirrhosis. I'm not a medic so I wouldn't deny this possible but it goes against what I understand about this disease.

    I do worry that people are misinterpreting de-compensated and compensated liver, and this is a very different thing. Can anyone confirm that these symptoms are actually completely reversible.

  • Symptoms can be treated but it is my understanding and I've never been told differently that Cirrhosis is not reversible .

  • I agree, but I suppose my question is, is ascites and varices veins possible without cirrhosis?

  • i don't know to be honest but the main cause of varices is portal hypertension / scarring caused by cirrhosis, once your liver is decompenstaed that is it your only option is a transplant. My husbands liver is decompenstaed he was going to be reassessed for a transplant having successfully been treated for hep c ...he was only diagnosed 6 years ago but it would appear he has had it for over 40 years ....sadly he took another stroke last week.

  • Well this is the thing, varices and ascites = cirrhossis, and this can't be fully reversed. So I do worry that Debs is misunderstanding her diagnosis.

    Hope you husband gets better, and gets his assessment.

  • HI my friend, I have had ascites, I've been on spironolactone since diagnosis. I was told I had cirrohis, my GP told me I was intolerant to alcohol and that I was just unlucky. Every sick note has said cirrohis. I was told I could have gone either way when I was admitted to hospital and that I was a very lucky girl. I was told I had a life expectancy of 2-5 yrs.

  • RodeoJoe,

    agreed. In fact, once you have either one of those, the liver is decompensated//It's like a pickle can't go back to being a cucumber..lol. Once your decompensated, you just are.

    I guess there might be special cases? but surely they were treated for either or both?

  • I think it's possible to go decompensated to compensated. But it's my understanding that the underlying cause is cirrhosis, and the cirrhosis itself can never be completely reversed.

    Hope that makes sense? Would you agree?

    So for Deb who says she had all those symptoms, I don't understand how her liver can now be cirrhoses free. I hope she's right but it doesn't add up to me.

  • The specialist has said that she is 99% sure it's not cirrohis and if it is, it was the onset and because I've not touched a drop since, she's wants to prove that it is not. I'm as confused as you my friend.

  • I know that although cirrhosis was previously thought to be irreversible there is new evidence to show that it can actually be reversed. Not sure to what extent but I researched it and checked with my heptologist and he agreed. Although there was a less qualified doctor in the room who didn't realise that. So under the right conditions who knows but it's definately not an overnight process. They're also doing some very promising research with stem cell treatment. I've heard that there is a stem cell treatment centre already in Thailand. Not that I'm reccomending going there I don't know enough about it but it's interesting.

  • I had ascites and varices on my esophagus and on follow up, when speaking to GP for results, I was told that I had one varices that was barely visible and that was good news. I appreciate what everyone is saying and I understand also, that I was admitted with decompensated cirrohis. That same specialist said that I needed my gallbladder removed also and now this new specialist has told me not to bother. I hope you can all see how I am confused??

  • Yes, I had 11 litres drained from Me. My Dr's are fully aware and all they say is that I've been lost in the system. I'm on spironolactone and thaimine along with anti depressents. As for thinking I was dying, I never thought I was when I was admitted. It has messed my head up a little as I have just been waiting for something to happen. In all honesty, I'm as confused as you.

  • Yes, I had fluid drained.

  • hmm.not sure..my doctors told me once you have one of those illnesses, showing de compensation, there is no going back. You can and might feel better, and your blood tests may be good again, for a period of time..mine sure were. Before transplant my blood tests were great..but the drains I was getting every ten days for ascites told the tale..you know?

    But, I could be wrong..Im not sure what other doctors say?

  • Exactly what I was told also. I have only been drained once, when I was admitted.

  • Yeah it is confusing. Are you still on spironolactone?

  • So sorry you have suffered so much from all this hope all goes well for you now !!

  • Thank you my friend xx

  • Hi guys!

    I've just read through this thread and I've got to say that everyone's kindness really stands out here, we all want the answers.

    Debate and expressing individual feelings is excellent and is it so nice to read that people on here don't take things to heart! ☺

    I'm just glad that I found you! ☺☺☺☺☺

You may also like...