ESLD

[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?

[MichW]

Hi my husband age 28 has esld (auto immune) was activated on the list April 17th this year.  He had his 1st transplant 11 yrs ago aged 17.
He has gone through ascities, severe itching, encephalopathy, oedema, jaundice and he has bleeding due to hemmarroids which they have banded once. He has been hospitalised for a couple of months now.  He is so skinny but is fighting along in spirit. The anxiety whilst waiting for a match is torturous!
Just thought Id share with the forum. We are in Perth Australia.

[motheroffour]

The reason the doctor seems disinterested is that patients with liver disease must take the first step on their own, that being giving up alcohol, drugs and things that are already liver damaging.  How is a doctor to "help" someone who is frankly killing themself and has no desire to stop killing themself.  No one can tell you how your ex will die there are just to many scenarios which you already know if you've done your homework on the internet and none of them are very pretty.  If he is taking steps to clean up his life, then he should make sure it is well documented for the transplant evaluation or find out from the doctor what needs to be done.  As has already been said, there are many who have an initial diagnosis and manage to live long lives, this is one circumstance where the patient does to some extent control their own destiny. All you can do is be supportive if your ex seems inclined to want to improve his physical condition.

[gjonez]

The only person I knew personally who died due to Hep C had to enter outpatient drug treatment and be drug tested regularly to have a shot at transplant. He continually tested positive for marijuana so they wouldn't put him on the list. When I met him he wasn't in great shape but not horrible either - within six months he had passed.

[Mr Liver]

Once decompensation occurs, there is a 50% chance that a tp would be needed within 5 years. Appx 80% would need one within 7. These are general AVGS. A Child-Pugh-Turcotte score can be used to determine prognosis in these cases. Google it.

I'm not sure of the importance of knowing all of the possible scenarios that may precede imminent death in someone with fulminant liver failure. Besides, I'm not sure if the cart isn't being put before the horse. I have ELSD and have been doing rather well for 5 years now. Many symptoms can be medically controlled including,ascites,edema,varices, and encephalopathy.

How come there was no mention of transplant as a possibility for your 'ex' ?
He'd have to sober up, of course, but I've seen this happen once someone realizes they truly are staring death in the eyes.

I pray that there is a good outcome in your ex's future and for all who care for him.

Yours in truth,
Mr Liver