Urgent Question

Post Edited (MamaLama) : 3/24/2012 7:08:56 PM (GMT-6)

We went to the ER this morning. She was very confused. Turns out her sodium is better at 125 so the confusion is not due to low sodium. The liver doctor said that she is experiencing short term memory loss as a side effect of the liver failure. Sound familiar to anyone? She knows what day it is, who the president is, what her maiden name is....but she doesn't know why she is in the car or where she is going. She didn't remember why we were in the waiting room at the ER.

The doctor said the leaking is fine and to keep doing what we are doing with the pads, and to keep it clean. He said that it was better for her to go home and for us to watch her than for her to stay in the hospital and risk infection. So....he sent her back home.

I stopped and got her a better pill organizer that has the 7 days and the morning, noon, evening, and bedtime slots. I set up all her meds for the week. I set her phone alarms to go off at the right times each day. I walked my brother thru everything to make sure he watches her behavior and makes sure she gets her meds. i made them some checklists for the times to take the meds, for her fluid intake monitoring, and what symptoms to watch for.

I left her house around 1:30 this afternoon as I needed to get back to my family and have a little me time at the beach with the kids. Around 6pm my brother called and said he thought the abdominal fluid had turned more yellow and pussish. So, I ran over there and checked her out. She was fine. The orange abdominal fluid was just changing colors on the pad because the pad had a little color to it. My brother seems a little unsure and anxious so I plan to stop by every morning before work, on my lunch break, and on my way home. Hopefully we'll get a call for a liver soon.

One other thing I wanted to run by you guys....when i was talking to the doctor in private in the hallway i told him i thought she was just scared with everything going on and with the memory making her even more confused. he said that she needed to talk to a counselor and i told him i have urged her to do that and  i would appreciate it if he told her that he really wanted her to do that. so he ended up telling her that he could tell she was very depressed and that was a concern because people who are very depressed don't do well post-transplant and that could make her an un-ideal candidate......obviously i wa snot expecting him to say all that. what do you guys this of this?????

oh, and is poke to my aunt and she is going to tell my grandparents to come down and help my mom. apparently they offered but my mom told them no. i told them not to tell my mom they are coming, to just show up.

Sara

Most with HE take lactulose.  Many who take lactulose also take Xifaxan.

For Mike it was a life saver while he waited for a transplant.  Without it, the poor man may have been done in by ME.  He became less beligerant and unreasonable.  He felt better about himself.  It really really helped.  He was able to articulate how he felt about dying, what he wanted done if he did die, how he appreciated what his daughter and I were doing to help him.  Can you imagine????

The problem wiht the Xifaxan is that is is super expensive and some insurance doesn't pay.

The manufacturer has a patient help program that has helped some.

Mike was flat out denied.  I wrote a really sob letter about what was next...denying the soldiers blown up by IED's in the wars would be denied morphine on their death beds?  That Mike had a terminal illness and the meds were helping him with a more peaceful passing.

In the end, Mike took the meds for 5 months and got a transplant.  So they are off the hook.

At first Walgreens said our co pay was $1300 a MONTH.  UGH.  It switched to ZERO.

Good luck.

Carol