Soz for all the questions

[Fauncey]

Hubby back in hospital, major hemorrage this time. He has had 5 varices banded and still sedated. I'm just about coping, but question is with decompensated liver disease can you still get on the transplant list even if you have came out if hospital in the past and drank. I asked the consultant today about it and she said they look at this and with his history of this even though he has had no alcohol from August she doesn't think he will be successful. Should I still pursue this.

[AyrshireK]

I would still push for him to be referred to a transplant unit.

According to the updated guidance (which I posted before) if there has been no improvement by the 3 month mark the patient should be referred and multi disciplinary team will assess suitability for progress to t/p assessment.

What MAY help is if he signed up to some abstinence support programne to PROVE he has the commitment/coping mechanisms to live the rest of his life without booze.

A doctor in a local unit can't make the decision re. suitability for t/p unless there is an absolute contraindication at play ....... total non-compliance, ongoing alcohol consumption etc.

To put things rather starkly you are fighting for his life because continued decompensation is putting his life at risk.

He needs to go to one of the t/p centres to allow them to intervene and assess suitability for progression to transplant assessment.

Best wishes to you both.

Katie

[Fauncey in reply to AyrshireK]

Thank you, yes I'm going to say to them again I just feel the are fobbing me off continually. Every time I ask them they give some excuse. He has a physiatrist a support worker all in place. They said the 3 month time frame you mentioned was people serious but he is ive been told to mabye expect the worst and every time he gets a bit better something else happens. I feel I'm getting nowhere with them.

[AyrshireK in reply to Fauncey]

What can be more serious than repeated admissions due to variceal bleeds?This is stage 4/ decompensated cirrhosis and the new assessment guidelines clearly state the referral protocol.

Get your requst for referral put in writing to his current hospital and that way it is in his notes and there could be a hint of 'comeback' if he isn't referred.

When my hubby was referred to Edinburgh a year after his initial bleed and diagnosis he had no symptoms of decompensation and we were sent over to 'touch base'. They took over hubbies treatment and it was a year later before he was assessed.

Keep pushing and if he wants it then make sure he is asking too.

Katie

[Rshc]

they do have to weigh everything up and assess risk of relapsing. My partner is listed due to ARLD and was told that the fact he gave up alcohol at first presentation was in his favour. That said I would in your shoes keep pushing and you should start putting things in place now which will help his case, for example if he engaged in some external relapse prevention, that would be looked upon very favourably by the transplant assessment team

[wurzle]

Well I wouldn't give up. Keep pushing for it. Good luck to you and your husband xx