I doubt anyone reads this, but I try to post anyway. If anybody pays any attention to whether Mom is doing well or not, they aren't speaking up about it. It would be nice if someone missed her. She has little reason to wake up in a day.
Mom's last ammonia test came back at 118. This is bad. It causes her to be unstable on her feet (she fell last night, in fact), moody, and it impairs her cognition. She still refuses to believe she has been diagnosed with hepatic encephalopathy. Sometimes she understands that her ammonia level is too high, and then it scares her. Sometimes she thinks she's just fine. I think she doesn't really connect the numbers on a piece of paper from the lab with what's going on in her body. As that number gets higher, her symptoms become more severe and more frequent. The doctor would like her level to be below 87. 118 means she's not quite thinking clearly. She cries constantly. She doesn't remember anything for very long and gets her days and nights confused. Last week, she looked for the sugar in the microwave. She has more trouble than usual in finding the right word. When her level got to 180 in the past, she started speaking complete gibberish. This is no exaggeration; she strung together sounds and syllables that didn't belong and couldn't make any clear words to form sentences. The step beyond that is coma. I'm trying to help her, but she is resistant and still believes she can handle this on her own. She doesn't understand how serious this is, and I can't actually do much. I can't force her to take more lactulose (though she is trying to drink more in a day, but who's to say if she actually IS or if she just THINKS she is...) and I can't micromanage her without her completely freaking out. I'm trying to keep her calm and tell her it will be okay when she cries.
The last appointment was very disappointing for her. The doctor finally told her the truth; that she'd never drive again. He said she would have to have stable ammonia levels for a year before he would consider it, and that's unlikely to happen. After the appointment, she asked for pickles (again....I hate pickles so much...if I never see a pickle again, it will be too soon) and I reminded her that the ammonia level goes up with her salt intake. She shouldn't have pickles if she wants to live. She said that she'd rather have pickles than drive again in her lifetime, even though she was crying over "losing her freedom".
Tomorrow is another appointment and another blood test.
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