Dad is in liver failure, need help!!!!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

stephaniemtodd0697
New Member


Date Joined May 2016
Total Posts : 1
   Posted 5/7/2016 8:01 AM (GMT -7)   
Hello,

My father is in the end stages of liver failure and we finally have him on the transplant list. My dad is 59 years old and owns his own aircraft maintenance business. It is a very small business, but he makes a lot of money, because of this we cant get him on disability. He REFUSES to stop working. I understand this because he is literally his income. He has to be present to sign off on inspections, etc. He has been at the hospital for days, get discharged and drive to work. He also has surrounded himself with people that are NO help and using him including a terrible woman who has him in her clutches because he is LONELY. He refuses to sign a Power of Attorney, he refuses to sell his assets to pay for medical care. He refuses to take his medicine correctly on some weeks because it makes him have to use the restroom constantly and when he is on an airfield there is no access to them. He also continues to occasionally smoke and drink.

My mother died in a car accident when my dad was 40. This leaves my sisters and I who are in the midst of raising our small children. Because of the disability not happening, we cant afford a nurse to be with him at night which is when he will fall asleep standing up and crash onto the floor breaking wrists and hurting shoulders, ALL of which is required to be healthy for his work.

The absolute best thing that we could hope for would be to go to an assisted living or rehab facility. But, at the same time, he is soo young, he wants independence.

My dad is also a person who does not consider others and is irresponsible with his care. For instance, as I type he is getting 4 gallons of water drained from his diseased legs in an ER. Had he gone to the doctor Monday when the fluids were building up we would not be in this situation. But, he knew he didn't take his medicine and that is why it happened, so he waited.

I am compassionate, loving and respecting daughter and I love my dad with all my heart. But, I am literally about to go crazy not knowing what I can do to help him. My sisters are the same.

If any one has gone thru this same situation, or knows of resources, or a route to take to get someone to help, please reply to this. Even the tiniest amount of help would be a mountain to me.

Sincerely,
Stephanie

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 5/7/2016 11:26 AM (GMT -7)   
Stephanie,

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.

Hugs,
Mama Lama
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.

rkayne
Regular Member


Date Joined Jan 2014
Total Posts : 93
   Posted 5/8/2016 11:09 AM (GMT -7)   
Mama is right, if he is in ESLD then he has to be sober to be on the UNOS list. My wife had a serious combo (at age 39) of hemocromatosis and AIH. And drank. That sober requirement is very serious.

She is 2 years post transplant now.

No, you cannot control him, but...the facts are there. Without treatment, without him doing his own checks and balances, he will die. And it will not be pretty or easy.

Has he talked to a doc who has explained the simple facts? It's not easy sitting there and having medical professionals explain how things are going to go. And they will. In graphic, shocking detail.

I am going out on a limb and assuming he has been seen by a hepatology team. If he has, and they have not explained what will happen...maybe you should go print it out and leave it somewhere. Somewhere you know he will read it. Maybe somewhere you know this lady friend will read it.

This is not going to be easy for you if he refuses to care for himself, but he might be one who insists there is nothing wrong, and continues until it is too late.

You can put your two cents in, but in the end it is up to ourselves as to our own ends.

I like the idea of talking to his lawyer, as there are times when one can get a power of attorney without the patient themselves accepting it. When you prove you refuse, or cannot take care of yourself...well...someone has to do it!

Good luck and keep us posted.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 5/8/2016 5:11 PM (GMT -7)   
Hello Stephanie, Sorry to have to introduce myself under these circumstances. If his fluid retention becomes chronic he'll have to face the facts. He's done with work until it's corrected or under control. The pain and swelling tend to persuade even the most hard headed sort. The encephalopathy issue can change from bad to worse at any given moment if he's not taking his meds.

Sorry to say it doesn't sound like he's ready to change. Without that one thing nothing further can be accomplished. Some people can live surprisingly long times in his current condition but most die painfully. What's in the cards for him? We can't say. I was told by my physicians 3 months max life expectancy (Been on this earth for 7 years). I wanted to live at whatever cost. Money is nothing if your in a grave. Pride is waaaay overated and a lot of humble pie will be all there is to eat if he chooses to fight his way out of this like myself and a few others.


Ziff
"The truth will set you free, but not before it pisses you off."

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 5/9/2016 8:56 PM (GMT -7)   
Steph, Are you still with us? Myself being a man of hard working principals can understand his situation. I'm sure he's a proud man and rightfully so. Not very many of us pay the price of child support and fewer less get to see the benefits of what we pay in. Allot of us dont set up with a mindset of being workaholics. The best way to stay outta jail and keep your ex from giving you a living hell is to pay. Nose to the grindstone. Meanwhile it hurts seeing someone else stepping up as a celebrated father role. Your just a financier to someone else dream.

There will always bills to be paid. There will always be injustice, But why oh why must we dwell on those issues? Doesn't each night bring a new morning? We are reborn again at first light when we draw that first breath is drawn. We jump in our ships wheelhouse and choose our destination. Our goal is less than merchants of old. We search for what it is we lost. Ummmmm, Oddly enough it's something we have looked over for years. Under foot as grass couldn't be so obvious. Saying these words and using all sincerity : I love you, I'm sorry, I'll do better to be a responsible human-being and a father. I'm not perfect although I did the best I could .

Daughter Stephanie, Dad needs to not only read it but live it. I been there. Alot of things will come flooding at him all at once just like buzzards to pick his carcass clean. He has to fight, Struggle through to find the man he needs to be to fix this time is of the essence.


Ziff
"The truth will set you free, but not before it pisses you off."
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 15, 2017 6:50 PM (GMT -7)
There are a total of 2,905,972 posts in 318,906 threads.
View Active Threads


Who's Online
This forum has 158250 registered members. Please welcome our newest member, 4som1.
348 Guest(s), 10 Registered Member(s) are currently online.  Details
1005tanner, Nostalgic Cowboy, Purrrsiankitty, Lissamarie, 3timechamp, js100, The Dude Abides, Skypilot56, WalkingbyFaith, Goat0724