Hi again to all, its been a long time since I last posted, although I am a regular reader of your posts.
After my hubby seen his consultant he was deemed to well for transplant, although he is decompensated and her final words to him were "oh well you have got until you're 70 for a transplant" . He's 45.
He been abstinent for over a year.
We have noticed that his stomach is swelling again and he seems to be tired 90% of each day. Mood swings can be hurtful and stressful.
I feel I am going mad!
Hi Catmeow
Your hubby's tiredness might not be just down to liver issue's.
I'm presuming he's had full bloods taken recently and maybe an ECG to check alls well in that area.
I'm not saying he has depression but concerns about his health can make you feel tired too.
If he has any breathing or walking issue's along with the tiredness or pins or needles in arms then I would get him to have a chat with his GP if there's no improvement with his health.
Hope things improve soon and please take care of yourself to as I know how mood swings can drag him and you down.
Love to you both
Trish
Hi this is all normal. When waiting for transplant. Husband use to sleep about 3 times a day. Yes he was also moody some days. He had a tummy drain. He also had varies had a bleed and had to have 7 Bandung. 7 weeks after transplant he’s a new man. He’s 51. Has he said yes to transplant? My husband is 51
My hubby does want a transplant so he can feel more like his old self. He's fed up of feeling like a pensioner with no energy and unable to do things that he used to enjoy. His consultant said you can't be too well or too ill. My hubby said well what's the point. He has may have to live like this for another 25years, if nothing else happens of course x
I know we've spoken at length in the past regarding your hubby (and my hubby). What are the signs you decompensation you mention? Is the lupus not more of a problem than the liver at the moment? What treatment is being put in place for the lupus as it might go some way to improving his general condition. Is he getting up and about, last time we conversed you said he wasn't getting up - that's going to do nothing positive for his mental health and when mental health is low it definitely contributes to negative physical health.
If hubbies major symptoms are the fatigue, energy and depression type symptoms then transplant won't yet be an option.
My hubby as you know is in the same boat. Desperate to live the life before liver disease but not poorly enough to be listed for transplant.
We were told when they delisted hubby that they couldn't do transplant for lifestyle improvement only, since, in some cases the meds and post transplant regime can actually leave some folks more fatigued than they were before.
It is a life saving operation only as there are so few donor livers.
It is cr*p I know that they have to live this sort of half life, limited life but you have to make the most of any good days as i've explained in the past. He might never get any worse and if he looks after himself and gets his head into some sort of order plus exercises etc. he could actually go a long way to improving his health.
My hubby still has low days, he's had a particularly low spell this last fortnight after coming back from hols but yesterday took himself out a 4 mile walk round our village and came back tired but happier having had fresh air and exercise.
Your hubby can't lie down to this, he has to keep going. Maybe transplant will never be needed or maybe like some a deterioration will happen that makes t/p necessary but he'll have to be fit enough for it - if he's laying in bed all the time, wasting muscle and not eating properly it could be that he won't be fit enough come the time.
He needs to live on, both of you need to live with this thing, don't fight it or dwell on it all the time but live any good days.
Katie
Good morning Cat, l sympathise with this dilemma. The are a number of reasons as to why a person is considered suitable for a liver transplant, and some conditions are more urgent and demanding than others. In your husbands casevit could be argued that a transplant would greatly improve his, (and indirectly, yours too) quality of life.
Like Trish has said, l too suspect your hubby would have had a full bloodwork carried out. Has he ever been told that he has diabetes? I ask this as the build up of sugar in the blood can cause fatigue and tiredness. It is quite common for a damaged liver to become insulin resistant. It is believed that insulin is the chemical signal that tells the liver to stop dumping sugar into the blood system. If the signal doesnt get through, then the liver acts like a sugar factory working overtime. This is just a thought.
It maybe considered, that all your husbands damaged liver problems are treatable without the need of a transplant.
I would go back to the consultant and ask him/her to reconsider their decision. If he then gets to be assessed as a suitable candidate by the transplant assessment team, then the final decision will be made by a team of around five or six different people and not by just one individual person.
This decision could be more acceptable for you both.
Hi, he is not diabetic, they said his bloods were ok. His last liver scan results said that he has around 10cm of liver left that's trying to function as best it can which led them to say that he's decompensated. His lupus is being controlled by medication as the creams didn't work, but the tablets he's on damage the liver over time so he can only take them for 6 months.
He gets up around lunch time each day but he doesn't want to go anywhere and is asleep on sofa again by around 3pm.
Hello again Cat,
This isn’t leading a life, but merely existing in one.
Some of the drugs could well be having an impact upon his tired state.
It’s hard at times to find the strength to want to carry on.
I, like a few on here have been in the same position and can truly empathise with this cruel disease. This is where the mental aspect of it all comes into play and a person can sink into a depressional decline. The “why bother?” or “What’s the point?” syndromes come into play.
A person can then just seem to want to give up, as they can’t see any light at the end of the tunnel. This can have a profound effect on family members and on those who care. Often when a persons like this, they tend to want to push people and love ones away.
It's like wanting to lock yourself away inside a bubble, or to what to climb back inside the womb again .
What your hubby needs is to try and refocus. To fight this, and want to win. This is very much a mental battle he’s now going to have to fight.
Staying in bed all morning, and then spending the day laying on a sofa is only going to cause muscle wasting disease, if muscles aren’t used, they’ll just waste away and turn to fat. If allowed to continue, then he won’t be fit enough to endure a liver transplant later on.
He needs to break the mental depression cycle and find that spirit and the will to want to fight on again. He can do this. Do something different, plan a day out and stick to it. He needs to become assertive and positive again. To be able to tell himself that he can beat this.
I’m sorry if I sound hard, and these are very much dark days for all concerned. But I would defiantly go back to your GP and speak of the mental anguishes aspect of your husbands liver disease.
This will only help to strengthen your case for a transplant, as in your hubby’s case, there is no quality of life, but just a existence.
Good Luck.
Thankyou Richard, you're not being hard, just being truthful. You're message inspired me, to try and get him to change again. You're right,he does need to fight back now as much as he can. We all wish we could turn back the clock but unfortunately we can't. Muscle wastage is a major problem, his arms and legs are really thin and with his bigger belly he looks a very strange shape. He doesn't see his consultant until Feb 2020. But there's nothing we can do about that. Thanks for understanding
Hi Catmeow
It must be a very stressful and worring time. Can you perhaps ask for a repeat appointment with the consultant to ask for a clearer rationale why they have made their decision?
There may have also been a multi disciplinary team meeting, where different specialists get together to discuss your husband's case and what to do next, if so, you could ask the consultant to talk you through what was discussed.
Best wishes
Trust1
Liver transplant waiting times.
No treatment no transplant nothing
engaging with alcohol support for transplant assessment
Post transplant confusion
Transport to transplant & being accompanied
