Hi all, hope you are well as can be. I haven't been in touch for a while as nothing had changed with my hubby's condition. Saw his consultant today thinking he would be able to go on the list but again we were turned down because she said he seemed well. so not ill enough to be put on the list. It has been 12 months since diagnosed with decompensated liver cirrhosis, he has been abstinent from alcohol since diagnosis and also stopped smoking. My hubby is feeling let down because he has done everything asked of him but he isn't getting a liver transplant. His consultant said don't worry you have until the age of 70 to receive a new liver, he's 45. He has full blown lupus still been 7 months and still can't get that sorted, he is sexually frustrated cus that's not working! He just says what's the point. he just stays in bed all day, everyday. Sorry to going on for so long but I can see his point of view, it's sooo frustrating!! xx
Transplant: Hi all, hope you are well... - British Liver Trust
British Liver Trust
Life can be so unfair, it’s all numbers and spreadsheets and they don’t seem to take into account the phycological side of this disease. I feel for you both x
Presume you mean he HAS been abstinent from alcohol? Hope so.
It took three years for me to be sent forward for my Assessment. Yes it is exceptionally frustrating but you just have to hang on unfortunately. I felt terribly ill but was not ill enough apparently 👎🏻 during those three years.
Maybe ask him to read the post snorker65 has just posted?
I can only wish you good luck and do hope he can stir himself a bit and try and do something, anything, even if it seems trivial.
Thankyou both for your replies, yes, when I re read my post I realised it said, hasn't, when I did meean he has been abstinent since diagnosis. I do agree with snorkers65, that it takes its toll on you mentally. He just wants to shut himself away. If I suggest to him that he should get up and we could go for a coffee or something to get him out of the house, he just says he can't be bothered. I feel helpless x
Cat - you can edit your post - maybe stop further comments?
I don’t know what you can do then - the effort at some point has to come from him. Does he know the effect it’s having on you? Maybe show him your post so he realises what you think?
BTW when I had my two day Assessment at the QEHB last year I will never ever forget the anaesthetist saying to me “Good Morning Mr H..., you look well today”. I’m glad I didn’t say what I was thinking because I felt like sh...awful and was not amused.
Hope he snaps out of it.
My hubby has periods where he feels the exact same, he's too well for transplant yet living this 'half life' - sleep deprived due to a mixed up sleep pattern, no libido, unable to work due to fatigue, shakes, concentration issues, issues being out and about with people not giving him the time to phrase and get out his sentences so feels why bother chatting, also the frequent and unannounced toilet need that has frequently meant dashes into hedgebacks and woodland for the loo.
He was delisted from transplant list after 10 months waiting (as he was stable and all blood numbers normalized). At the time we felt like the light at the end of the tunnel had been snuffed out.
Sadly, transplant isn't always the golden ticket and it can go wrong or leave you worse than before so they don't take the risk when a person is relatively well. At the time of hubbies delisting we had members on here who were reporting the negatives of transplant so it sort of put things in perspective for us.
However, after getting over the initial feelings like that we now try and make the most of life, ok it's not the one we planned and hoped for but it's what we have, there are people in a worse situation. If your hubby has better days than others he needs to grab those and enjoy them. Exercise is necessary, with cirrhosis your muscles quickly get eaten up and without any exercise they will waste quickly - remember the heart is a muscle too and if it comes to transplant assessment he needs to be as fit as possible so that includes heart and lung health.
Hubby walks a minimum 20 minutes a day and often more, your hubby needs to somehow get over the depression of having this condition (mine was diagnosed with an adjustment depression due to his sudden ill health). He needs to try and live the life he has and not regret. My hubby has been ill since April 2012 with auto-immune related cirrhosis - there is nothing he can or could have done to prevent his condition but he now makes sure he follows doctors orders to the letter.
Hubby and I yesterday headed off on one of our caravan holidays, we are free, not bound by the t/p list and as I speak hubby is packing up a picnic lunch and preparing to drag me off a walk for the day. He buzzes when we get outdoors and active.
Hubbies motto before ill health was 'Life is not a rehearsal, you only get one chance, LIVE IT!!' Ok it's difficult to adjust to living a different life than the one you wanted but somehow you've got to.
Don't lie down to it, don't give in. Giving in and lying in bed all day will only make him more physically and mentally poorly and loosing his muscle and fitness might even deny him the chance of transplant if or when it becomes necessary. (Anaesthetist said this a t/p assessment).
Encourage him to try and get out and about, a short walk a day, a trip out, all do wonders. Hubby is now 4 years on from being delisted and just lives life day to day but makes the most of good days. He's now 58 (51 on diagnosis) - i've read this post out and he's contributed to it too - he's just said "get a cat!" - best therapy ever (ours was a stray and turned up at the door when hubby had first gotten out of hospital after nearly dying with a variceal bleed - we credit her a great deal with his improvement in mental health).
Best wishes to you both,
p.s. Treatment obviously required for your hubbies lupus as that brings it's own side effects.
Thank you for a great post Katie. It mirrors my life ethos now exactly.
Katie you are spot on again! It is so nice to hear from you about how it feels from the other side, you show a very clear understanding of the issues that we have and how you are coping with it. Your compassion for your hubby must be a great comfort to him. X
Thanks Katie. I understand that he need to make the most of life and his situation. He's admitted to me this morning that when he is awake which is quite a few times during the night he says he can't stop thinking about that he might die and how terrified he is. He also said he was worried that I will leave and find someone who can make me happier. I have truly promised him and tried to reassure him that I'm here for him, every step of the way and for the long haul journey we will take, we are both in this together. I love him more than life its self. x
Hi Catmeow, I am in the same boat as your hubby, except that I am 2 years past 70 ( I was 69 when diagnosed). I too felt I was being sidelined, after following all the advice given. It took me a long time to overcome these negative thoughts, but in the end I just thought it was out of my control, so why get depressed over it. My GP and Consultant both have the opinion, that they are only responsible for the physical welfare of the patient, not their mental welfare👎👎👎. I now take each day as it comes, and health allowing, try to enjoy my life. Your Hubby is much younger than me, and so has a much greater chance of being listed, although, as Katie said, it can be a double-edged sword. My thoughts and prayers are with you both.
A liver transplant isn’t the end of the story. It’s just the beginning of another chapter. Not being listed is a very very good thing in my view. The feeling like crap, no sex drive and the silly sleep patterns is all a part of cirrhosis. That can be managed.
I’m also Sick but not sick enough. It used to make me upset and like I was living in limbo.
Now I have to embrace what I have and build on that. Walk an extra step every day and things like that. Life isn’t fantastic but I make the best out of it.
Thankyou for your kind words and advice. I wish he could focus on some positive things to make him feel better.
I wish you all the best too and listening to you and others on here, positivity seems to be the best medication. x
Excuse me for asking , but when you say he is decompensated what symptoms/ effects from the cirrhosis is having.
Is there any chance of getting back to being compensated. Lots of people do.
Good luck x
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