Episode IV: Hoping for Poop

Mom has been declining since the EGD, and it's become a much more rapid descent this last week. She hasn't been eating or taking kristalose, which means she hasn't been moving anything out of her system. I tried to get her help yesterday, but she gets extremely agitated and combative when her ammonia level is this high. I called the primary doc and the GI, but the primary only refers to the GI and the GI is on call at the hospitals all week and isn't taking appointments. They said to call 911. I called the EMT's, but they are limited both in knowledge and what they are allowed to do by law. They couldn't do anything. Saw the primary today and he referred to the GI and ordered blood tests (which speaks to his lack of knowledge on the subject as ammonia testing of the blood has been an abandoned practice because it is not indicative of the ammonia level in the brain). I made an appointment with the GI for tomorrow, but mom refuses to let me take her. She has agreed to let the secondary caregiver take her.

For those who are wondering about her current symptoms, some are things we all do and that mom already does more often than others, but is now doing more often than *her* baseline. Other symptoms are those that only occur when her HE is out of control.

The symptoms that are exacerbated during an episode, and that she is displaying currently and for the past week:
• problems walking (fallen into 3 walls today, and has trouble with steps)
• memory loss (so severe that she didn't recognize her own car)
• missing time/confused time (i.e. she thinks what happened two weeks ago happened yesterday)
• stuttering and mispronunciation of words or using the wrong words
• sleeping way too much and having difficulty waking her (this is how it leads to coma...eventually I won't be able to wake her)

The symptoms she is currently displaying that she typically doesn't:
• lack of comprehension of simple questions (this goes beyond confusion...I asked if she wanted me to get her scripts and she said yes, that her phone has a dead battery)
• illogical thinking (although that might belong in that top list..but she's so far gone now that she can look straight at something and not know what it is, even her dogs; didn't understand why she couldn't make a 1:30 appointment if it was already 3:55; she took her morning and night time meds together this AM)
• she is extremely agitated and she hates my ever-lovin' guts (note last November when she told hospital staff that I took her to the ER to murder her)
• staring into nothing for no reason - I call it freezing

I plan to do the only things I can do; have the caregiver take her to the GI and hope he calls 911 and orders her into the hospital, keep her safe and comfortable at home and hide the knives, encourage her to take kristalose and pray harder than I ever have for her to poop. I don't usually go into pooptalk on here, but it's the only way to get the toxins out of her system when the liver fails to be a filter, so our lives really do revolve around poop. Sad, but it makes for some great jokes and at least makes us realize what's important and puts things in perspective. It's such a different viewpoint on life when someone is running a red light, endangering everyone around them, so that they won't be late for work, yet my mom could go to sleep tonight and not wake up tomorrow because she isn't pooping enough and medical professionals aren't familiar with her condition to treat her even though they can recognize, as one EMT stated, "she ain't right." That red light and being late for work just seems silly in comparison to poop now, doesn't it?

So love your family, take care of your livers, remember to support the liver life walk because it is all about research and education to stop things like this from happening, and pray for poop. <3

Neuro tomorrow!!

The long anticipated, repeatedly rescheduled, vitally necessary neurologist appointment is tomorrow. Finally!! The first few appointments were rescheduled due to mom's previous PCP being a complete jackass, and the last one mom wasn't feeling up to going. We've been pushing for a neuro consult since 2011, and desperate for one since her seizures last November while in the hospital.

Let's hope he can order some valuable tests to tell us the damage already done, if and how we can repair it, and how to better prevent it. I'm really hoping he orders an EEG and cognitive rehab.

Please remember that you can join Team Kathy for the liver life walk without walking. Being on the team means you support us in spirit and help with fundraising. For instance, if I can set up a fundraiser in your area, you can help by spreading the word and asking for donations or sponsors. This is the only major fundraiser for the American liver foundation all year, so please click the link at the top of the blog and click on "join team" down by the roster. We can make a difference!!

Sorry Cody

At least, I think that was your name. I'm terrible with names. I apologize to the woman I met in the waiting room. I didn't know where you went for a soda, and the moron pharmacist was useless. Couldn't get my meds and was too upset to stay. Really not a great day.

Fabrication Example #486

Yesterday, mom and I had a conversation that serves as a great example of fabrication. Fabrication is a practice of making up information. It is a symptom of HE, among other things, and it's important to note that fabrication is NOT lying. People with this particular problem believe everything they make up as if it happened in reality - it IS real to them. Many people don't understand fabrication in HE patients. Thus, I've decided to post this as an example. This is intended to educate the reader. This is not judgement and I am not angry with my mother. She honestly doesn't know she does it, which is part of the issue. People in this situation do not have the capacity to see the fault in their memory. It is literally impossible for her to acknowledge or accept, or even understand, that she does this, and it's all from ammonia built up in the brain. Conversation as follows:

Mom: Do we have any chicken soup thawed?
Me: No, we ate all the thawed stuff. We have a lot frozen.
Mom: How much?
Me: That tub in the freezer.
Mom: That huge tub?
Me: Yeah...do you want me to thaw it out?
Mom: You can't thaw that thing...it's plastic.
Me: Why can't I thaw out stuff in plastic? We always do.
Mom: No, you can't do that. Plastic melts in the oven.
Me: In the OVEN??
Mom: The toaster.
Me: What?! I'm so confused. How would I put a tub of frozen soup in the toaster?
Mom: Not the toaster...the oven. The little one. The one on top of the microwave.
Me: Yes, I know what the toaster oven is...but why would I put the soup in there?
Mom: You just said you would...to thaw it.
Me: No, I didn't. I would not put a plastic tub in the toaster oven. That is not a good idea.
Mom: Well that's why I was wondering why you'd do it!
Me: Except I never said it! I never said "oven" or "toaster" or "toaster oven"...that doesn't even make sense.
Mom: I KNOW!! THAT'S WHY I DON'T KNOW WHY YOU'D DO IT!

I asked her if she realized that she had fabricated that, and that she was putting words in my mouth. She said no and was offended that I would "call [her] a liar." I tried to get her to see that she assumed that I would do something, even though it didn't make sense, and that I told her about it, but then she called me an ass, and I realized that she would never see it. She believed entirely that I said I'd thaw a giant plastic tub of chicken soup in the toaster oven. She did realize something, though, because she was overly sweet afterwards. Lots of "thank you's" I don't usually get and a "I hope you have a good nap and a good day..."

She's on the phone now, balling someone out. Don't know who, but apparently they are liars and stealing her money and I've heard "don't you DARE pass me on to someone else!" a few times. I'm sure she's giving some customer service entity a run for their money...or a run for her money...one or the other.

Laughed So Hard I Cried

Mom came into my room and looked at my long dresser- the kind that's short and long.

Her; You know, I used to have a chest...
Me: Yeah, I know, it's been a while.
Her: Hey! If you lose weight, you'll lose yours too!
Me: Uh-huh.
Her: Anyway! I don't know where that chest is.
Me: What chest?
Her: [pointing at my dresser] That one.
Me: Well that one is right there. How is it lost?
Her: Not that one, you ninny! The chest that matches it!
Me; You mean the one in your room?
[lightbulb appears over Mom's head]
Her: Ooooohhhhhh! Forgot about that.

Serious, I laughed so hard I cried. Scared the dog. No joke. Funniest crap ever.

You Know It's....

I'm thinking I should start a new series of one-liners, "You Know It's..."

I had this horrible nightmare where my ex kept coming back and thinking we were still together in his head, and then I had a dream where sheldon from the big bang theory was my boyfriend. I found myself thinking, You know it was a bad relationship if dating Sheldon seems like a dream compared to being back with the ex.

Bazinga.

You know it's going to be funny when Mom starts a conversation with, "I'm glad I'm not a man...."

Believe it or not, she had two reasons.