Someone I care about with end stage liver disease

[Deen2]

Someone I care about has Hep.C, Cirhossis, Diabetes, Portal Hypertension, Barrett's Esophagitis, Pulmonary Hypertension, Thickening of the heart,and is not eligible for a transplant because he continues to smoke, drink, and abuse drugs. He has ascites and struggles with near chronic infections of various types but especially cellulitis. He lives alone and I worry how all of this is going to play out. Can you tell me what it will possibly look like or what we might possibly expect?  He is currently cognitive, working, driving, and still able to care for himself.

[Deen2]

thank you for writing.  i have no one to talk to regarding this matter. my "friend" is my (ex) husband and the father to my 6 children.  he is so "possessed" with the demon of addiction.  he has/had the most wonderful heart of anyone i had ever known. he was easy to fall in love with.  but, i was, unfortunately exceedingly blind and naive to addiction; what it looked like and acted like. he is a master of deception.  he lies to everyone about anything and everything.  even though i still care about him, we are separated 3 years because i just could not let him come back into our world and bring all the insanity back after he left.  i go to some of his dr. appt.'s, but it seems like the dr.'s are either completely loyal to him and his "privacy rights", or they "seem" disinterested because of his obvious unwillingness to give the very habits that are killing him. (i do not stand in judgement of them at all). today i saw his grown and married daughter from his first (destroyed) marriage. she wanted to know how much longer he was going to live, and how he was going to die.  of course, i could not answer that.  but, i too, desperately want someone to tell me, no matter how ugly, what i need to be prepared for.  i have read all i can find on the internet.  have i wrongly come to the conclusion that most esld patients die when their portal vein ruptures?  i have read that more than once. or, is he more likely to waste away? can anyone please help me to be better prepared for what lies ahead?

[cajunlady]

Very well put Avidreader.  I have had a friend and 1st cousin die of end stage liver disease.  My friend did not know he had hepC until it was toooooooooo late; and he partied until he found out.  He was so far gone that he did not even have the choice of getting cleaned up to do treatment; his liver did not have the time to wait.  He died within 4-6 weeks. Long, horrible and very painfull.
My 1st cousin knew and still abused his body with alcohol, he did try treatment programs many times and still went back to the drinking, for him the doctors refuse to give him the option of giving him a transplant, he was not going to stop drinking and they knew it. So, for about 3-4 weeks the family and friends just visited him until he died.

Deen2 :  Good Luck with your journey trying to get your friend through these times in his/her life.  He really does have his own disease with abuse as well as hepC.  Just keep him comfortable until the end.  You are a very dear friend to stand up for this friend knowing his weaknesses.  Try and keep things up lifting.

Cajun

[avidreader]

It's very difficult to watch someone you care about suffer and die from end stage liver disease. It's a slow and painful death. This difficulty is, of course, compounded when the person who is dying is also suffering from the disease of addiction and is unable to curtail or control the behaviours that in caused the illness. My heart goes out to you and your friend. Be a good listener. Be non-judgmental and care. Sometimes that is all that you can do.

From a practical point of view, your friend is probably exhausted and has very little capacity to help himself right now. If you can, help him make and keep medical appointments and get what treatment he can to make him as comfortable as possible. If he will let you, go to the doctor with him--with his permission, the doctor can share the prognosis and disease progression with you. When the time comes, find a good hospice program. Try to keep his fridge stocked with easy to digest comfort foods. Share memories and laughter. Don't forget to be good to yourself during the journey. Please take care of yourself. You sound like a good friend. Good luck--I've been there and done that and while it was very hard, I'm a better person for it and have never regretted the final hours I shared with friends who just couldn't get better.

[antman]

sorry to hear that this person is continuing on their self destructive path, knowing they have all those health issues. really, the only thing you can do for them is to encourage them to get help to quit all their deadly habits. their is really no point to giving someone a good liver if they are going to destroy it anyway. their are too few livers to go around as it is. good luck to you and your friend. it sounds like they have a death wish and don't care if they live or die anyway. i can't feel sorry for someone so selfish that their habits are put before their health and life.