I find it very difficult to believe that this condition can be so draining... I would have definitely left him by now had it not been for the glimpses of the man i married. It feels, at times, its a huge put on and his constant put downs etc are really a true reflection of how he really feels... When I try to discuss it, he denies doing any of it... The prof says, well its part of his liver disease so in a way we should just put up with it...
Its a horrible condition that drains any remaining personality of its victim....
Written by
pear-shaped
To view profiles and participate in discussions please or .
My thoughts are with you pear-shaped and I hope you don't have long to wait until you get that all important call and you get your beloved hubby back.
My hubby (thankfully) hasn't reached that stage yet but as we speak he is sleeping trying to get through the pain of yet another endoscopy and banding as his consultant continues the battle against his varices - he has now had 40 bands and it doesn't get any easier with each session.
All these conditions are robbing our loved ones of their active lives and it is horrid to see. We are not yet at transplant stage but the condition totally dominates our lives, every 4 weeks going to the hospital for banding, waiting for the appointments, dreading the procedure then up to 7 days post-procedure recovery. No energy, no drive and constantly desiring the life he had before, even the week before diagnosis he did a 16 mile walk now a short stroll through the country park is a drain.
Anyway as I say, my thoughts are with you, if you can you need to try and get time to yourself and not take it to heart what he's saying, it is like a dementia patient and my hubby and I know what it's like dealing with that so draining.
Hopefully though you will get that call and post-operatively you'll get your man back and you can start to live life afresh and he'll pamper you a bit.
Bless you, my husband has had banding, twice, which was bad enough, goodness knows how we would cope if it had to be so frequently... I have said before, its almost like having bouts of Tourettes, but only for a short period of time, although it can go on for hours on end, just non stop about anything, right now the subject seems to always be, i seem to be having an affair with just about anything that walks.... Its awful because he starts in front of his mum and my kids, i do hope the call comes soon and this time it matches... Hes put on so much weight and cannot move about as much as he use to...
Lots of us out here can identify with your feelings. Been there done that. Mine even had a bad attack of something bordering on paranoia/schitzophrenia after the transplant surgery. I felt he was never going to become normal again. But he came out of it. Think it was combination of run up to surgery, HE, meds, anaesthetics and bad dreams whilst under. He did come back to normal. So you see however bad it gets it does subside. Good Luck
Hello,my name is mike and I have been fortunate to have received a liver transplant 16 months ago. I hope my message to you wll give you some comfort and enable you to see a light at the end of what you see as a very long tunnel. My journey to receiving the gift of a replacement liver was a particularly long one,over 4 years. During this time my health slowly deteriorated to the point where my brain stopped working and I started behaving in an irrational manner,being objectional and rude to my wife,close friends and relations. Throughout this time my wife in particular, was a "rock" supporting me at all times. I am sure that without her I would no longer be around,suicide coming to mind on more than one occasion. Today I am largely back to normal,and a member of society again. Everyone I meet saying the "old mike" is back in action. Our life is transformed,socialising freely and also going abroad on holiday. If we did it so can you. My wlfe and I certainly know how you feel and our thoughts are with you. We both wish you the very best of good fortune and hope you remain strong. If you do you should reach you goal.
pear-shaped, My dear wife sticks by me, and I (we I should say) have some stories to tell - I suspect we might be able to help in some way, I will try to private message you, perhaps you could do the same to me so we can get to talk together - I had ONE moment when it hit me I had a problem, things are sooooo much better from after this moment, not cured or perfect but handleable.....
If it wasn't for the support on this site, I'm sure i would have left by now... Reading how patients and carers feel and cope makes me feel like i can go on... The prof says that apart from the refaximin, there is no other option... Only transplant can help... Hes putting on so much weight, finds it hard to stay mobile...
Thank you for sharing, gives me something to hold on for...
Bless you xxxxx ask about LoLa (L-ornithine L-aspartame I think) - since Rob has been taking it we have only had 1 major HE event - he is still really sleepy but doesn't get into rages or really confused states - it has worked wonders for him. Definitely worth asking xxxxxxxx
An amazing thing happened yesterday... My husband wanted to know why I was so upset... After building up courage... I told him that what he says to me and the kids is making me miserable and i feel as though this is how he really feels... So he then apologises! These are those rare moments I was talking about...
I'm trying to... Just want my husband back... This disease has drained his whole personality leaving a bitter, nasty and horrible man... Thank you for your warm thoughts...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
xx
Can he have liver failure already
Please which hospital in the UK would you recommend?
HE / Lactulose regimens
Father having a first episode of HE 
