cirrhosis of the liver

my husband was diagnosed with cirrhosis of the liver with hepatic encephalopthy he has been in the hospital twice in the past three weeks and we still don't know anymore than what i have learned on the internet the doctors don't tell us much he has acute kidney injury and ascites,varices in his esophagus they are going to test him for prostate cancer because he had to wear a catheter for a week the urologist did not say much either so how long does he have no one is saying i have read everything online i can find he has bouts of confusion even on lactulose and rifaxamine he is like a little kid sometimes and then sometimes he can be so mean he is 66 years old will someone please let me know what stage he is in because i am thinking three or four his feet are staying humongous so he is taking on fluid but his stomach is staying soft he was disagnosed in january of 2014 it is 2016 now his lactulose went from 30ml three times a day to 60ml three times a day please someone give me some input here cause no else is .

13 Replies

  • Hi

    This sounds exactly like "end stage Cirrhosis" and also "hepatorenal syndrome" this is where the Liver has not been able to clean the blood properly so the kidneys start to get overloaded and damaged. Nobody can say how long he has left, it could be over night or he might pull some thing back and get a couple more years.

  • thank you so much that is more info than i have gotten from anyone

  • The body can sometimes surprise us on how much it can cope with. I was in similar state to your husband two years ago, my family were told to prepare themselves for the worst. I was on High Dependancy ward. As u can see I did manage to survive it all. It was a long road to recovery, having to learn to walk and feed myself again.

    Sadly this illness has no time limits, some manage to survive several years but others sadly become far to poorly to carry on fighting it.

    My heart goes out to you, this must be so heartbreaking. If you have questions, ask the doctors, you need to know exactly what is happening and what your doctors proffessional opinion is.

    You will be in my thoughts and prayers xx

  • Thank you I pray everyday and he is still retaining fluids in his feet and legs

  • Thanks for this. Now I will have hope if I fall into a state where the toxic feed is so powerful it takes over my ability to think. I live in liver failure, I have been in end stage for more than a decade. I have had untreated liver cancer for two years but today I cycled the trails in the woods and cycled the ocean highway then did resistence exercise for 2 hours on the beach in hot sun, a total of 3 hours of strenous exercise today. I think its what keeps my toxins from destroying my mental health. Its hard doing 5 to 8 hours a week of strenous exercise but liver disease is a hard disease to manage. Its wonderful you got a second chance after being so ill.

  • As Janey was and your husband

    I was in a terrible state 7 months ago same as your husband but with great doctors on my side and an almost 2 month stint in hospital I have to say the last 4 months are the best I have felt since I first got diagnosed 4 years ago. I am on no salt and everything is cooked from scratch and I also have a fluid restriction. My kidneys improved and also I hardly suffer with water retention now. Can I ask how long has he been on rifaximin?

  • Only a month

  • They do take a while to really make a difference but they are brilliant tablets my H.E is under control now it only plays up if I get an infection.

  • addiej Sounds tough. Others have commented on his condition in general,

    is he eligable for a transplant? is this under discussion? he sounds somewhat like my experience :

    I was diagnosed Jan 2013 (I had no idea there was ANYTHING wrong with me, I went to a well mans clinic!) and I had an urgent transplant Nov 2014 so just over 18 months from diagnosis to end stage.

    I am 62, male, had "chronic" HE and "click" with your description of like a kid, / so mean. I can relate to that! does he understand and accept that he is suffering from HE,? does he realise afterwards that he is being kid like or being nasty? can you // do you talk about it? (or is he in denial, something you can not talk about, etc.? )

    Before I understood what was going on I was in denail, got angry (with myself) for being incapable and making rudimentory mistakes / forgetting things / dropping things and took it out on the person around me, Dear Angie my wife, then I realised I was behaving like a mad man (after some time) and from that moment bad moments were not so bad.....

    Wishing you and hubby strength and love . Charlie.

  • he doesn't think he does anything wrong he is in strong denial because he thinks everyone is being mean to him but he is the one cussing everyone out he will be good as gold one minute and the next minute he is mean to everyone

  • Unfortunately it is the illness causing his mood difficulties, the anger & meaness as you described it.  Hepatic Encephalopathy can cause serious changes in the personality of the sufferer - PCBnPBC who has already responded has taken part in training for doctors and spoken at conferences about HE and the effects on the patient.

    It isn't nice to have to deal with but this isn't your husband doing this it is the illness - hopefully the Rifaximin will in time kick in to have some positive effect.

    Sadly though he is very, very poorly - what you are describing are all end stage symptoms of liver disease - his liver is decompensated at the moment and not being a medic I can't advise what can bring him back from the brink at this time - as others have asked has there been any discussion as to the possibilty of transplant?  Unfortunately the test for prostrate cancer (if this becomes a diagnosis) might rule this out.

    Sending you both much love. xx

  • Thank you so much for the info but now he has stage three chronic kidney disease and a enlarged heart enlarged prostate right now I don't know if it's cancer

  • I woukd say hes in stage 4 and is despeeste need of a transplant, im going through thus with my brother , were in the process of getting on the list

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