Brother with cirrhosis

[Claireholexx]

Hello, I haven't written on here for quite a while, I wrote then about my 55 year old brother with end stage liver disease he was taken into hospital in January and is still in today we have had an awful 3 months the roller coaster that has been spoke about is the worst I have ever been on the stage we are at now is that there is a chance he can come home within the next week as there is nothing else they can do in hospital he seems to be ok although he looks awful he has lost so much weight it's shocking he also has ascites so his stomach is swollen although I want him to come home I'm scared of what lies ahead of me and him I have to go back to work soon and not sure how I'm going to be able to cope with it all awful thing to say but I don't trust him not to drink again in all the time he has been in hospital some days on deaths door he has never said that he won't drink again in fact the opposite sorry for the long post just needed to say a few things. Wondering how long I really have got left with him I do feel that the funny , full of life brother whom I love dearly has already gone and that breaks my heart xxxxx

[h0b0]

My heart goes out to you. My partner is 54 & has cirrhosis. The difference is though that he's sworn never to drink again. Just had a stomach drain but now an infection. He's been in hospital since beginning of Feb although he's come home a couple of times he's had to return in a very short space of time. All we can really do is be there for support & love.

xx

[Claireholexx in reply to h0b0]

Thank you , I also feel for you since he has been in we have been through every every symptom this disease throws at you we have found out recently that he has know his liver was decompansated in November 2013 and didn't tell any of us I'm surprised that he has lasted this long he is now detoriating a lot not sure what the next couple of months will go suppose I just have to hold on tight . Hope you are dealing with it the best you can xxx

[Robbo_c]

I do sympathise, I posted the other day about my mum who is in a similar situation. She has said that she doesn't drink anymore, and I do believe her. Even, so I worry that the damage has already been done. She clearly needs a transplant to get any sort of quality of life back, but I think she may be too weak at present

I think the uncertainty is one of the worst things. My mum is clearly very ill, but her consultant mentioned the other week that her liver function is "stable" and if she stays off the alcohol, she might get some liver function back. But who knows if this will happen, and how long it will take!

Obviously your brother needs to stay off the alcohol, maybe it's worth contacting one of the alcohol support groups. I think there are some links on the British Liver Trust website and the NHS website. I wish you all the best in dealing with this - I know how hard it is xx

[Claireholexx in reply to Robbo_c]

Thank you for replying he has been offered the help I was with him at the time he was very reluctant to agree saying he thinks he has conquered ( he hasn't ) I then stepped in and he agreed for help still waiting to hear from them as much as I would like to see him out of hospital I think this is going to cause more stress and bad feeling between us as I don't trust him I can't be with him 24 hours as I do have a family of my own plus an 85 year old Mum that I'm trying to keep as much about my brothers illness as possible she do know that he has cirrhosis but not that it's end stage and his only survival is a transplant . Sorry I'm ranting on again just nice to voice my concerns and have logical views back xxxx

[Catfishjumpin in reply to Claireholexx]

Sounds honest to me, not at all like a rant. You must respect your feelings. This is their disease not yours. Love and food is all you can offer them.  Good luck.

[Footygirl]

Hi. If your brother is terminally ill, have you contacted Marie Curie. They help anyone, with any terminal illness free of charge. They do a great job.

Good luck

🌹

[Claireholexx in reply to Footygirl]

Thank you , I didn't realise I could contact them always thought they were for cancer patients, I will give them a ring thanks again xxx

[Catfishjumpin in reply to Footygirl]

Wow wish we had someone like that, i would call them to help me!

[Footygirl]

Hi. No any illness. If you are diagnosed as terminal they will help, free of charge. Please do ring them. If they possibly can, they will help.

Love

🌹

[Claireholexx in reply to Footygirl]

Thank you xxx

[Bolly in reply to Claireholexx]

I'm not 100% sure but I think you can only access their care if the patient has a doctors diagnosis of only a few weeks or months to live. With ALD as we know on here people can be listed for transplant yet improve or live for much longer than a few months.  Have the doctors definitely said "terminal". If not I don't think Marie Curie will provide free care.

If you need care at home you could try domicilliary care agencies many of whom offer care to anyone over 50.

[Catfishjumpin]

I am so sorry. Its all up to luck, chance, fate and will power now. Its all on him. Believe me I know. I live in liver failure and with liver cancer, I was an alcoholic, highly functioning one for a lifetime. I am 54 now. I have been sober a long time. I did not want to die so I gave it up. I must rest most of the time but I still have 2 to 4 hours a day I can cycle or swim or hike. I live alone. My suggestion is leave food and fluid near him and go to work, go ahead living. Clearly you love him. He could rise again to a degree but only if he is fiercely determined to live. I do not eat unorganic food, no meat, no dairy other than the best organic yogurt. Alll food choices should be easy to digest as we have very little if any bile. Good luck. Try to be happy in YOUR life, he must do so in his life, thats not your job. Love is the best thing you can offer along with a nice diet. Keep it simple. ALOHA

[Claireholexx]

Thank you for your reply. My Niece whom I am very close to has said the same thing and deep down I know that myself you can lead a horse to water but can't make him drink it, I'm praying that he will have the same mindset. Thank you again xxx

[briccolone]

you have my sympathies-as everyone esle has said-if your brother stops drinking he has a fighting chance-if he doesn't-he doesn't. Some people on this site have pulled through this..depends how much he wants to live? sounds a bit glib I know-often alcoholics have such low self worth they dont care anymore-also depends on any support network. I posted here recently on an old friend of mine who was 63 and had been drinking for years having cirrhosis and jaundice-eventually led to liver failure. Despite that he pulled through with  a lot of time in hospital but succumbed sadly later due to infection. If your brother gets out of hospital-he has to stop somehow... best wishes

[Claireholexx in reply to briccolone]

Thank you for your reply. Friday he was discharged from hospital as they said medically there is nothing they can do they offered him care at his home and he refused telling them that I would do it I can't give him this commitment as I have a family of my own we had a few words he can be so nasty I'm finding all this too much to handle I was with him yesterday he hasn't eaten a thing hadn't taken his tablets so I sorted all that out left him with food and drinks he has now realised that he does need some sort of help so I have to sort that out now aswell don't get me wrong I love him with all my heart and will help as much as I can but at the moment I'm finding him very selfish . I hope nobody thinks that I'm heartless I'm just finding it really hard trying to balance my time for everybody xxxx

[briccolone in reply to Claireholexx]

not heartless at all-you're in an  invidious position. I'm afraid the selfishness is common in these cases-I think you're doing all you can. I sincerely hope he pulls through although its not looking great. 

all the best

K

[Claireholexx in reply to briccolone]

Thank you xxx