Transplant

[Catmeow]

Hello, hope everyone is as well as can be. It has been quite a while since I have written anything on here but I do still regulary read your stories.

I still wonder wether my partner will ever be offered a transplant, he has done so well and has been abstinent for more than 2 years. He has a decompendated liver, he suffers regulary with back pain,stomach pains,nose bleeds etc... I just feel that we are not moving on. He said he feels so drained and fed up. I have to pick.up.the pieces of his mood swings as well as coping with my own issues which include depression and have now started going through the menopause of all things.

I'm finding it hard to find the strength for both of us, hes 46, I love him dearly and forever but I feel I am slowly crumbling. Sorry to bang on about myself but how do people cope with the uncertain and how do things get better?

[AyrshireK]

I think your previously said that doctors have said that hubby is too well for transplant at the given time if that continues to be the case and the symptoms you describe are still his only ones then as he is probably still not transplantable. As we've discussed previously it is only a life saving operation and sadly due to the shortage of organs and the fact there is no guarantee that things like fatigue etc. will actually improve post transplant they can't give them on those grounds. Although you state that hubby is decompensated - unless he has ascites and bleeding varices he wouldn't be considered decompensated at all. The way that cirrhosis is categorized is :-

Stage 1 - Cirrhosis but with no varices, no ascites. (Compensated)

Stage 2 - Varices but no ascites. (Compensated)

Stage 3 - Ascites, +/- Varices (Decompensated)

Stage 4 - Bleeding, +/- Ascites (Decompensated)

As you may recall my hubby was listed back in 2014 but delisted when he became 'too well' for transplant. He still has symptoms of chronic fatigue, sleep deprivation, minor HE type symptoms, some small varices, minor tremors, problems with cognitive function and concentration etc. However, he remains too well for transplant. It is a case of learning to make the most of the life you do have, ok it's not the one you'd desire but it's the one you've got and you've got to make the most of any decent days. My hubby has gradually gotten over the adjustment depression he was originally diagnosed with and has learned to live with his condition. Yes, some days he still mourns they guy he was or the things he'd love to do but sadly can't. But we have got to remember that transplant isn't always the golden ticket as someone on here has recently been told at transplant assessment between 5-10% of patients don't even make it off the operating table and there can be all sorts of complications from there on. Not everyone gets the 'life renewed' we'd all hope for and if hubbies life isn't currently in danger they arn't going to potentially take it away from him but putting him under the knife.

I can't recall if your hubby is being seen at one of the transplant centres or not. If so they will be on the ball and when/if the time comes right for him to need transplant they will get him though the assessment procedure. If he isn't currently at a transplant centre then there is no harm in pushing for him to be referred to one - that's what we did. Hubby now gets seen by a local consultant but his care is directed by the liver consultants based at the transplant centre in Edinburgh even though he no longer attends the transplant clinics he remains under one of the consultants over there & we trust that if he deteriorates again he will go back into the transplant system.

All the best to you both, I know it's hellish living this sort of 'half life' but if that's all our hubbies have then that's what we need to live with and make the most of but do push for him to be assessed if you feel he is deteriorating.

Katie