Posted 5/7/2016 11:26 AM (GMT -7)
Welcome to the HW Hepatitis Forum.
We are sorry to hear how ill your Dad is...End Stage Liver Disease is not pretty and is ultimately fatal without transplant. Some folks, those with alcoholic liver disease, can sometimes get a reprieve by quitting drinking, taking all the meds correctly, and continue for years. I hope one of our long term members will come in and post his story. Ziff was near death and has been YEARS on his feet again.
However, I don't understand one thing. You say Dad is on a transplant list. They don't generally put folks on such a UNOS list in the US if the patient is still drinking alcohol. Generally, they need a 6 month program, either AA or with a counselor or treatment program.
I know when my partner Mike's liver was cirrhotic, they had him come to the Transplant Center in Miami, FL, where they wanted to put him in the hospital until a donor became available. But the blood tests and his own admission suggested he was a drinker, so NO LUCK. They sent him home with all the meds your dad likely takes and told him to keep sober 6 months, go to AA, and have a blood ethanol test EVERY WEEK and then in 6 months they would put him on the the list.
It was a terrible 6 months. He was in the hospital a week a month, getting this or that treatment to keep him alive. But he did it and was transplanted 6 months and 4 days from that first meeting with the Transplant doctors.
When they realized he was serious about staying alive, they started their transplant prep....MRIs, blood tests, cardiac clearance, kidney clearance, etc. They give a lot of thought to who should get a donor organ. They won't give one to someone who is going to abuse the new organ.
Before he want to the Transplant Center I felt just like you, that things were out of control, and he would not do what he was supposed to do, and I actually wished "something" would happen that would get him to get sober and do what the doctors said.
That did happen, he had horrible Hepatic Encephalopathy. That is when the fluids (like the ones you Dad gets in legs and belly) travel WITH their toxins to the brain and start to cause odd behaviors. Confusion, poor decision making, inability to drive or operate machinery property, remember details, walk, find the bathroom...it can get really bad. Then Mike got Sepsis...where infection threatened to close down his kidneys, etc. and that can be really bad. We got the family here, friends, etc, because it was clear he was going to die.
BUT. He got sober, went to the AA meetings, wanted to live. And as I say above, he got his transplant. 5 years and 6 days ago...it is a hard day to forget.
BUT. He had to want it.
During the days we thought he was going to die, we DID get power of attorney, the will, medical POA etc. He was so confused, it was almost easier to get him to do these things than it was when he was angry and grumpy.
That your Dad is pushing and pushing without all that organized is a worry. You must be desperate.
But, in the end, I have come to understand, we are each able to make our own decisions. And if your Dad has chosen to work until he dies at his desk or in his hanger, that is his decision to make. It is a sad story. Not uncommon. But you and your sisters may have to wait until he falls so sick he is powerless to complain. Since he does not have his affairs in order, do you think you and your sisters will be able to pick up the pieces if he dies without organizing his personal and business affairs? Maybe you should talk to a lawyer, maybe even his lawyer and find out what might happen in such a case.
I am sorry that your Dad's lady friends seems to be standing between you and your Dad's good decisions.
We have many members here who have been either in your shoes, or the actual patient going through all this. I hope they pop in.
Is there any chance he would let one of you go to the doctor with him? If you had his blood tests and you posted the numbers here we might have some additional suggestions.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.