British Liver Trust

A little bit of advice

Hi, new here so hoping I'm posting in the right section....

My brother who lives with me and my partner is a recovering alcoholic he had been drinking heavily for a good number of years. He has been extremely ill over the last 5 years with cirrhosis, ascites build up, HE, 2 occasions of Spontaneous Bacterial Peritonits which very nearly killed him. He has all the known issues that come hand in hand with liver disease. His ascites build up is awful to see and has spread down to his scrotum which is the size of a large melon.

When he had his episode of HE it was horrendous, the hospital sent him home to us with his HE and left us to care for him 24 hours a day for 5 days. I finally managed to get him into hospital after he had a bad fall and split his head open. Three days earlier he fell and cut open his back. I called the doctor and he came to the house to check him but my brother refused to go to hospital so he was just left.

My brother will not tell me everything medical and I'm left to search the internet for answers to symptoms.

He has (this morning) been refused to be added to the liver transplant list because of his past drinking habits. Hes been in hospital for the last 2 weeks and to start with we were not aware of why he was going into hospital as he never said. He finaly told us as he was told by the doctors they would need to speak to family.

I get no help and struggle to cope with his deteriorating health, he can't do basic hygiene like wash or shower and urinates in bottles. His room is a shocking stinking mess, I'm not allowed to clean his room as he says it's his private place (my house)

I've been in touch with our local integrated alcohol social work department but still waiting for a call back, they arrange a time to call me but it never happens.

My brother has terrible issues walking due to back pain, sometimes he would screen in pain. The doctors and hospital were aware and he was sent for xrays months and months ago - we were only advised yesterday he has a fractured bone in his spine and no one had told him. He was only advised to take painkillers and rest.

I'm his next of kin and I'm desperate for answers and to know where we are at, what happens next and who can help us but I don't know who to ask.

I'm not sure if anyone can offer advised but it writing it all down helps me

6 Replies
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Are you down as NOK with the hospital/GP? If you are, you can go direct to them and ask what the situation is. Is he still drinking, because if he is and the doctors will know from blood tests, he will not get much sympathy from the medical profession. Also they will not consider a liver transplant with someone who is still drinking.

You will get good advice here, just keep coming back and responding to the replies. First is, his current drinking status.

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Thank you for your reply. No he isn't drinking as he physically can't, he can hardly walk to the toilet or downstairs so thankfully can't make it to the shop. He was getting a lot of shopping delivered but I managed to log into his Tesco account and no vodka was including in his deliveries. I'm not sure if I'm down as his next of kin at the hospital or doctor, I will need to ask him.

I've just come off the phone with him and he sounds very down. I asked what the reasons for the no to the transplant and he said it was down to his drinking history but I will get more info next week from the social worker.

I struggle to cope with it all and the not knowing what's going on.

His health is extremely bad, he is 47 this year and he could easily pass for being in his 60's. He is skin and bone and it's heart breaking to see. He use to be a married man and high up in an oil company now he lives his life in his bed not speaking to anyone.

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with some folk all you can do is see all his affairs are in order,

is he not drinking because he cant get any, or does not want it

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that comment is in no way helpful

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Good morning,

You are clearly in a terrible situation and its really difficult to give constructive advice. You do seem to be stuck between the medical team and your brother.

Its wrong to leave everything to you without proper support and information.

You say the hospital want to speak to his relatives. Have you been able to speak to the team at the hospital ? If not, that's what you need to do as soon as possible.

Just to reassure you, if so far, he has survived two episodes of bacterial peritonitis and two weeks in hospital he must be reasonably strong. I had one episode of peritonitis and 80 hospital admissions in one year. I know full well how serious that can be, my partner was even warned at that time that I might not make it. I lost a lot of muscle mass with the ability to walk and properly care for myself.

However, I stopped drinking completely and went on to have a completely successful transplant.

I must take to task what was said in a previous reply to your post.

It is correct to say that a transplant will be denied to somebody currently drinking, but it is completely wrong and unhelpful to say that he or anybody else "will not get much sympathy from the medical profession." The nurses and doctors who are caring for your brother are all professionals who care unconditionally with a positive regard for all regardless of anything other than their illness and their right to treatment with respect and fairness.

My liver disease was entirely alcohol related. When at the referring hospital and then the transplant unit, I had, without exception nothing but positive help and support from every member of staff.

Please don't think that your brother has been written off. Just keep trying to get the right information and support for yourself and your brother.

Take care,

Jim and Lucy

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Thank you for your taking the time to reply and your advice. My brother has been in and out of hospital for the last 5 years. His longest time was about 9 weeks then on other occasions it was a couple of weeks to a couple of days.

I have spoken to one of the nurses in the transplant unit and was told that my brother is very sick. I didn't like to ask to many questions as I'm not sure what I'm allowed to ask. I also spoke to the transplant unit social worker. I'm hoping to get a social worker in our area and try and get the ball rolling for some care.

I have the email address for the transplant unit social worker who was going to call me with the transplant decision but not heard from no one - was hoping she can explain the reason behind the decision as my brother is a bit confused with it all.

I've made contact with the local Integrated Alcohol services but because my brother has stopped drinking he would need a different kind of social worker?? He did give me information on local support groups that I can attend to get some help and help me deal with it all.

I've read so much information on the internet and also on here which has been brilliant

I think I just want someone to sit me down and tell me everything that is wrong and what the future holds.

I have gone through all his medication and found pills for epilepsy which I knew nothing about. I just worry when he is out of hospital and what will happen.

Thank you again for taking the time replying to me

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