Hi all, my ex-husband was recently refused a transplant due to the fact the doctors felt he could not be abstinate from drinking if he had a new liver. I think they also thought he was too ill to withstand such a huge operation.
A few weeks down the line he has deteriorated badly. His platelets are very low, he has dreadful bruising all over. His muscles have wasted away so his arms are like sticks but the fluid is being retained all over the lower half of his body, penis, testicles, abdomen, legs, feet.
I fear the end is now quite near. The latest hospital discharge letter recommended Gold Standards Framework for him and the GP wants us to sign a dnr form.
He's not fully aware of what is happening although thankfully doesn't have HE at the moment. I think he just hears what he wants to hear.
I'm not asking for advice but just wanted to get it out of my system on here. There is no advice that we as a family need now. I probably know more about this disease than the average GP...I'm quite an expert. This is a horrible slow debilitating disease that drains the life out of the patient and the family looking after the patient...it is actually a living death for him.
Anyone who is still drinking (he stopped about a year ago but too many years too late) please please think about what you are doing to yourself and your family. My chiildren are still young and my heart breaks for them.
Written by
Diamond101
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My heart goes out to you, as for drinking he has got to want to stop. It's ok to rant on here we are all good listeners. Maybe he may change his mind all of a sudden.
'I'm not asking for advice but just wanted to get it out of my system on here. There is no advice that we as a family need now. I probably know more about this disease than the average GP...I'm quite an expert.'
First part noted and the second part, I don't doubt it, most of us become more knowledgable than GPs.
So, please feel free to sound off, nearly all of us are on one side or the other and by that I mean, the one who has to watch and hope and the other which is the patient. I fall into the latter, although am I probably at the better end of the scale than most.
My heart goes out to you, and I hope it makes you feel a little better by getting your feelings on paper, I know before my husband had his transplant, it did help me.
Well, it sounds like he did stop drinking. Seems like he did what he could once he knew he had an issue. That does seem to be a big problem with liver disease. Often you don't know you have a problem until it IS too late. My heart goes out to you and your dear family. It has to be tough.
I think everyone who's ever had an alcohol-related liver condition can relate to what your poor ex-husband is going through. I can hear people now just thinking, "There by the grace of God go I", that could so easily have been me. Sadly what a lot of us don't realise at the time, is all the pain and hurt we cause to others. You are being so brave Diamond and your love for this guy still shines through. I have nothing but total respect for you being there for him. My heart too goes out to you too. Try to stay strong and brave.
Thanks for the replies. Yes he has given up drinking now. I'm not sure where we go from here. All he wants to do is sleep. He looks dreadful and seems to be getting pain around the liver area now for which he's been prescribed morphine. He's fighting a losing battle and we all know it. I fear this is the beginning of the end
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