February 22, 2011

A confession gone wrong

Confession time. I cant count. Nor do I know the difference between March and May. Both months have very significant days in them. For the last month I have been anxiously counting to my one year mark on the transplant list next month. Yeah, about that, its not until May. And 3 months away. So good news is, I have only been listed for 9 months. Bad news is...Ive only been listed for 9 months. UGH! This my friends is what happens when you don't take your meds like you should.

I really have been slacking on my Kristalose. I am supposed to take it every morning. Every Day!! No if, ands or buts. BUT, some days I just cant. And I guess I'm just going to have to do it later in the day if not in the morning. Because I can feel the clouds rolling in. And by clouds, I mean the damn storm that is encephalopathy. My mind gets foggy. You know that feeling when you have been drinking to much and you are telling yourself you need to focus and stop acting a fool. That's what it feels like. I know what I need to do, but its just so hard to focus. And some days I just cant take it. Last week the boys were both sick. So I most definitely could not take it while they were home, because they needed my full attention and I could not be spending my whole day in the bathroom. I had planned on taking it in the afternoon, but trying to cook and having to run up the stairs to go, leaving the boys downstairs, not an option either. So I figured Id take it at night after everyone was sleeping. But then I spend the only few hours I had to sleep in the bathroom.

Who would have though mixing a packet of powder with some water, and chasing it with another bottle of water could be so hard. It is much easier to swallow than that dreaded Lactulose.  And for those of you who have never had to take it are probably calling me all sorts of names. And those that have taken it, may or may not understand. These meds are draining. No pun intended. I know I have to take them, and I usually am very good at taking them, but then weeks like the last happen and days like today happen. My mind is wandering. Its nothing to serious for now, but if I were to eat a bunch of red meat, Id probably have another episode like THIS. The good thing is, I know my body. I know the signs. And if I have to take them, I will. Just some days, I just cant.

So what exactly are these meds and why do I need them? Keep in mind, I am no Dr, but this is how it was explained to me. We all know that the liver is like a big filter. My liver is damaged. Therefore, it isn't filtering the toxins out of my blood. The toxins are then carried to my brain causing the H.E. This causes me to be confused and forgetful. I have horrible bouts of insomnia. I can get to the point where I slur and stutter and I just cant get the words out of my mouth. My Anxiety goes though the roof. My body gets so tired. And the treatment for all this...Lactulose/Kristalose. The main purpose of this is to prevent the liver from absorbing all the bad stuff. And getting it out of my body. The only way out...well yeah. So pretty much its a super laxative. Every have food poisoning. Its like that, except on purpose and every day. So when you add dehydration to the already horrible list of the symptoms of the Encephalopathy, you can see why, I say its physically and mentally draining. Ive recently switched from Lactulose to Kristalose. Mostly because the side effects were so horrible and painful. It seems to be working. It much easier on me and my insides than the Lactulose.

Have any of you taken this? Or knows anyone who has? I wouldn't wish it on anyone.

Until Next time...Bottoms up.


I do NOT miss this morning shot of nastiness :)

1 comment :

  1. Yep. I commiserate. I have to take Endulose 4x (!!!!) a day, and I hate taking that and the feurosemide and spironolactone and actolose that I have to take as well. I have enough to do in life without spending the majority of it on the throne. But if I don't take 'em, I get the brain fog. As it is, I was just reminded that I forgot my FIL's birthday this past weekend. Joy. Stay strong. You're doing great, and you're a real inspiration.