bivins, welcome to the forum.
Four years ago, I was in your exact shoes. My partner, Mike, was a drinking man, a good man, but he loved his beer, wine and gin/tonics. A lot. He had known he was Hep C positive for many years and that he could not drink alcohol. He was sober for a year in 2003 when he did a treatment cycle for his Hep C. Then gradually he took it back up again...a sip here, a glass there, and a lot over time.
When his MELD was in the teens and his liver biopsy showed cirrhosis for the first time it was 2004. The Hep at Mt. Sinai in NY told him that if he stayed sober, he could go 15 years on that old liver before hie got himself in trouble. Wow...15 years. Party time. He was only dying after all, the he** with it!
What he got was 5 party years. By 2009 he was a sick man. All the symptoms you mention. By 2010 is was a walking dead man. His Meld was 26, he had every symptom in the playbook and was loony as well...the hepatic encephalopathy about
did ME in and I wasn't the sick one. He was dazed, confused, angry, aggressive, compulsive, and generally awful. He could not drive as he was not able to make good decisons, and forgot where things were.
When he could not stand the smell or taste of anything, he lost a lot of weight and quit drinking...Sept 27, 2010. A date I will always remember, for sure.
He started with the one week a month hospitalizations for kidney failure, sepsis (he almost died that time), more kidney failure, low sodium, horrible pancratitis, and more kidney failure. While he was in the hospital in early 2011, they started his transplant evaluation so that he would be able to be listed the second he reached his 6 months sobriety.
Meanwhile he took everyone's advice, went to AA 4-6 times a week and started feeling a bit better about
himself and his fate.
We planned his funeral just the way he wanted it. We got his estate in order with some participation by him. He signed a medical proxy and a DNR. We faced it directly...he was likely going to die.
Then two things happened at once...one bad, one good. They found liver cancer in a difficult to reach place, so it was not eligible for treatment. BUT is was very small and he got through the last sober month, got on the list. They gave him exception points for his tumore and he jumpted to MELD 22, and then his body really started to fail. He was transplanted 3 years ago May 1st. He has remained sober, has had a difficult recovery.
But now he is on an antiviral treatment for the Hep C and he feels better than he has in YEARS.
Who knows how long you get with a transplanted liver....but every day he is here is a miracle.
So...does your guy want to live? It is up to him.
But right now, being his caregiver is what you have chosen. Choose some other things too. Put his affairs in order, as Ziff said, get the power of attorney, get his medical proxy, know what he wants to do about
intubation, feeding tubes, dialysis, etc as his final days may be very difficult and it will be horrible to have to make decisions at that moment. Know what you might do and then you can implement the plan with a clear conscience.
Also, think now about
your plan...your "what if" plan.
I have another plan. If IF IF, my guy were to start drinking again, his liver center said they would not continue his care. And I will not stand by him again. If he wants to go back to that life, he will choose to do it alone.
I wonder if I would be strong enough to do that if there were a next time. I stood by him for many years, love him with all my heart, but our contract NOW is "sober forever."
I wish you well, this may be a bumpy ride.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant May 1, 2011, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014
Beginning Viral Load = 3,700,000
Week 1 Viral Load = 302
Week 4 Viral Load = <15 Undetected
Post Edited (MamaLama) : 4/26/2014 8:56:26 AM (GMT-6)