Father with ESLD

hello this is my first post .my father was diagnosed about 2 months ago with end stage liver disease.he has gotten fluid taken out 4 times now out of his abdomin. he is in alot of pain- low sodium levels to where he is cramping badly in his hands and legs we had an appointment for a liver transplant evaluation but his sodium levels are dropping rapidly .it was still 2 weeks till eval. we went to his doc and my dad asked if he did not go to get eval and decided not do do anything further- with his labs what they were how long would he have the doc never answered that before but after discussions with his heptologist who said nothing they were doing was working they said probably around 2 months . so my dad said he has decided not to get the eval he feels it would be 2 late to even get on the list he is in terrible pain and confused alot of the time he cant hardly stand up and walk he has no muscle left his cirrosis is due 2 hep-c does anyone know at what point can hospice come in we r going to see his primary doc tuesday and let her know his decision to not go through with eval

Post Edited By Moderator (hep93) : 10/18/2012 9:43:49 PM (GMT-6)

Hi, Calypsa, and welcome. I do think your dad should go ahead with the evaluation for transplant. He can change his mind about transplant all the way right up to the actual event. If you have his lab scores of INR, bilirubin (bili), and creatinine, you can get his MELD score online. The higher the score, the closer he would be to transplant. See link below:

http://www.mayoclinic.org/meld/mayomodel6.html

Hugs,
Connie

Calypsa, I agree that the evaluation would be very difficult for him. It was hard on me and I'm basically well except for hep C fatigue and pre-transplant liver cancer.

His heart problems may also prevent him from transplant, as well as the strokes.

Hugs,
Connie

Did you explain to dad that the salt restriction is to help prevent swelling? Salt makes one retain fluid. Depending on what his meal is, he can ask for lemon slices and squeeze some juice on chicken, broccoli, etc., for better taste. It has a salty taste.

If you have recent lab values, I'd go to the link and calculate his MELD now. One and a half mos. ago is a long time in liver disease. The MELD could be significantly higher now.

If he's not diabetic, get him the candy. If he is, get something sugar-free. He's so miserable that he should have something that makes him feel better without adding to his present problems.

Hugs,
Connie

Calypsa,
His sodium level being 120 means he is severely dehydrated . . the doctors should have him on a saline drip . . . a very slow drip. so it hydrates instead all going to the belly!! iWhen your father wasnts to have something to drink, give him ice chips to suck on or frozen fruit . . no large glasses of anything to guzzle down.It's kind of a vicious circle . .take the diuretics to keep the water off, and then dehydration is an issue. It's really tough to keep up with . . we were on a first name basis with our first responders when we were going thru this. My husband became dehydrated so often . . he would stand up and his BP would dump to 55/35 . . life threatening. Ammonia in the blood is another issue . . much worse than the dehydration in my opinion. With both of these issues, someone will have to be there or checking on him all the time. It's a rough road either way your father chooses, but like Mamma Lama said (I think it was her), get him on the list , if he gets the call and decides no, so be it.

good luck

Debbie

Calypsa,

I'm glad your Dad is in the hospital until they can do the paracentesis. He'll be a bit more comfortable for a while then.

The symptoms of End Stage Liver Disease are very difficult. For the patient and for the loved ones and caregivers. The patient feels terrible, and often is cranky and obstinate...which isn't much fun for anyone.

You are in a fix with him not quite well enough to be an out patient for transplant evaluation and and not quite ill enough to be an inpatient.

He (and his loved ones) have to think this dilemma through.

Mike was a mess, but we did the evaluatioin over time...a few things at a time over 6 months. He was horrible the entire time. But it worked, he has his transplant about 18 months ago now and is pretty good. Not perfect, but pretty good.

Let us know how the situation unfolds,

Hugs,
Carol

Post Edited By Moderator (hep93) : 10/22/2012 6:38:49 PM (GMT-6)

Calypsa,

This is sad news indeed. Yes, he must have known how far along he was in the disease process.

I'm glad you had help from Hospice at the end.

Best to you and your family as you plan for whatever is appropriate in your family and cultural background.  Don't be a stranger, others may want to hear your wisdom, learned during a sad difficult time.

Carol

I'm very sorry for your loss, Calypsa. Glad that he had hospice at the end and died at home. My condolences.

Hugs,
Connie

ty kisses and hugs to u all

So sorry for your loss...I had hospice for when my dad passed and it was a good thing.  Again, so sorry, take care of yourself.  Pat