We have been reassured that he is now a top priority...
I thought he was keeping positive but tonight he burst into tears and said he can't see the end to this at all... And I'm not sure what I can say or do to help him... His bilirubin was almost 500 and today you can't actually see his pupils in his eyes due to the yellowing from the jaundice. I was joking about grand kids the other day and he said - well at least you will be lucky enough to see them... I feel so helpless and more still - useless...
Pear
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pear-shaped
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We was told that last year that he wasn't able to have a liver transplant.
its a right blow to the head cos all you think about is your hubby going to die an it's awfull feeling.
You just carnt seem to get motivated for nothing.
But we getting help he goes to hospice on a Thursday so that it gives me a rest from him cos it can pull u down with it love.
We just take one day at a time an enjoy what ever time he as left with us.
But he's doing great really which his weird we have had abit of a life since he was put on lactlouse to get rid of the toxins in his body with the liver not working properly.
He's asnt had to be drain nearly almost 11 months cos hes eating healthy.
so that why we get out when we can but I have to push him in his wheelchair where ever we go but it's good cos we not in an out at hospital.
I really admire how you are coping with such a dreadful situation. I know the 'what can go wrongs' but can't even imagine how I would cope. Your love and support for your partner is truly a symbol of strength and hope. Your positivity must feed into his and give him reasons to hold on... I take so much from you and all the other users of the site and try to be more focussed myself.
Wishing you and your partner lots and lots of love,
Hi pear, I sympathise with you all the way and beyond. I have days like this but Some how seem to pull out of it , may be it's bècause I get my backside kicked. I still think all will be ok in the end, I am here for you to chat to or even have a go at but keep hubby positive. Take care. xx
I think this caught me off guard and I just didn't know what to do as it's not something he has done before... It's clinic day today and I supported him to have a long hot bath and then a shower to clear all the dead skin along with all the negativity!
Pear sorry to hear your hubby is worse. He is top priority now so that's positive . The comment about the grandchildren must have hurt as you were joking and his comeback is a bit like a slap bringing you back to his reality as he sees it. Especially if he has been so positive . It's hard but a mix of empathy and tough love does help. Although physically it's not happening to you. Mentally and emotionally it is. He may not see that or the way his words hurt you. It's understandable he doesn't see that but he needs to try and be as healthy as he can should a liver become available. Can you tell him how you feel about situation. ? Sometimes it feels like walking on broken glass thinking you will say the wrong thing but sometimes they need to hear it. Always here for a chat. Tracy xx
We are in clinic today so hoping to have support in getting him back on track... It's such a vicious circle as you know there is more to go wrong against the chance of having a donor match... It's a reality check we probably needed...
If he is on top priority it shouldn't be long now until the new liver comes. Maybe the tears were there because finally a positive decision has been made even though it is scary. Never give up hope and let him know that your there for him and how much you love him, but I am sure you do this every day and he knows it. My thoughts are with you always as well as loads of positivity. Keep strong Pear and here's lots of hugs to keep you going. Good luck xxx Ruth
It just feels so never ending ... His bilirubin is so high and he is getting weaker as the days go by. He needs someone like the coordinators to keep touching base with him to keep him in check almost... But they seem to be so busy and therefore he doesn't get to see them. Our doctor is lovely and she always spends lots of time listening to him and he feels she does really care.
You helped me through a bad few days i was having earlier on in week, i know its hard but we just have them especially when your still looking for that light at the end of the tunnel he is tired of the whole thing as you are, we always take it out on people closest to us i think my husband and all the partners living with someone with liver problems need a sainthood you just dont know what to expect from one day to the next. So hang in there and you moan and shout at us take care xxx
The most unique thing about this site is the way carers and patients all give their perspective on such dilemmas. He is feeling a bit more positive again. He has lost some strength but has been told to build his muscle by walking.
I have nothing useful to add, you know your hubby, a good cry can clean out the mind, especially if after a good cry you can get back into positive mode (I know that was I how dealt with it) is H.E. an issue for him / you? thats a wild one to deal with, for me, having Angie support me in my quiet times, laugh with me in my lighter times, and just being there "whatever the weather" gave me something solid I could rely on, and holding onto that rock allowed me to get through it all. Love to you both, Charlie xx
I seem to be in so much dispair... His HE disappeared with this last transplant... It has taken some getting used to! We are grateful that he doesn't have HE or the cancer anymore. But like I said... He feels he has come out of one black hole and straight into another...
I'm not sure if this is of any reassurance but I was priority and it took a couple of weeks. My bilirubin was almost 600. I made it and 6 months down the line I feel amazing. Tell him that! I was at the same point, I'd stayed positive till the last few weeks but the anxiety and general unwellness finally took a hold. I didn't sleep, eat or think of anything else, I was totally consumed.
I had shared your story with him and he was so taken by your account! He has been listed since April as a priority so is feeling quite restless that the call has not come. He is so worried that he will become too ill or die waiting...
Hi, Hang on in there. I'm sure we have all been there, you both need to think more positively. Also you are not useless, you are his big help without you he would give up, so feel proud and kick his bum once in a while. Take care and keep us informed, it's good to talk.
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feeling really anxious 
Feeling fed up of feeling ill 
I;m feeling crap - head-wise
Silly but that’s just how I feel 
Feeling like there is no hope.
