new to this and Frustrated

Mark is on both Xifaxan and Lactulose,the Dr said we have to not worry about his sugar level when his ammonia is high,which it has not been normal for 3 months now,we tried the Xifaxan w/o the Lactulose and his Ammonia went to high,so basically its a no win situation for him !

I'm very sorry to hear this. Yes, his binge could've caused more damage and it sounds like it did. He needs to get an upper endoscopy.

Hugs,
Connie

So you can see how this latest drinking spree could've made matters worse. Even though it has only been a couple of months since his last endoscopy, I would request one to see if there have been changes for the worse.

Hugs,
Connie

Dr visit was scary,her exact words were "Mark should have died months ago,why he is still here is a puzzle" Took lots of blood,will hopefully find out results tomorrow !

I asked Mark that if his leg got cut off and he could see how bad it was would he do things right? I think because he cannot see his liver and pancreas and spleen, ect ,it doesn't seem real to him ! And it is hard for me to sit back and watch him destroy himself when I am trying so hard to keep him together as much as I can !

NEH, it's not your job to "keep him together." It's his. I hope he has realized that this is very real. I'm thinking perhaps you should go to Al-Anon as Emma is. There it's about YOU.

Hugs,
Connie

NEH, I hope so, too, but don't count on it.

Hugs,
Connie

NEH,

One day at a time, my dear.

Today is the first day of the rest of your life.

Live it the best you can.

Hugs,

Carol

 

Hi, NEH. I'm sorry to say that none of this sounds hopeful. It seems he really needs a transplant, but of course it cannot be considered since he had that drinking binge. Has he talked to you about transplant? Is it something he would want and be willing to go to AA on a regular basis to get his attendance documented?

As for the HE, you can try increasing the Lactulose dosage. It doesn't appear that he is having enough BMs. The red palms are known as palmar erythema and are common in those with end-stage liver disease.

Hugs,
Connie

Q: can one person react to a lower high level then others ?

A: yes. Many docs don't care so much about the ammonia number per se, they go more about the mental status of the patient. My partner, Mike, was unreasonable, ugly, and confused. He had the tremors in hands and feet. He dropped everything. He said I hid things. One day I hid his apple sauce in his lunch bag...we were going to be away from home through lunch time. The bag had a spoon, a napkin, a turkey sandwich and one of those little apple sauce containers...and I hid it on him!!!! So sad. The one thing that was important is when he started to get frisky driving the car...so we had to take his keys and his doc told him no more driving until or unless he had transplant.


Q: Short term memory,says I don't tell him things,or he did or didn't do something,its crazy.So my question here,is this all normal ?

A: Completely normal for End Stage Liver Disease. Mike couldn't follow TV shows, books, conversations. He'd forget where we were going, that he had appointments, that he'd eaten lunch, if he took his pills, which pills were which. AFTER transplant, I discovered that he pretty much has amnesia about the whole year before. People came to see us from all over...Germany, Utah, Californnia, Connecticut, New York...to say goodbye to their dear friend. He says they never came, that I made this stuff up to make him feel better. Sad. But true. After transplant he remembers almost everything again. He is changed in some ways...he does not have the cognative skills he once had. I think because he still as the Hep C.

Q: Red hands?

A: Yup yup yup. And being cold all the time. And swollen belly, edema in legs, potential for bleeding, sleep disorders....night and day confusion. All liver disease related. You are in for a bumpy ride.

Best,

Carol