Wednesday, October 27, 2010

Nothing Much Happened Today

There's not a lot going on. I seem to be really tired all the time. Every day this past week I have slept more than usual. One day I slept for almost 13 hours, plus I still took cat naps after I woke up. I have also had stomach aches in the mornings that usually last for a while. Sometimes all day. I am really getting tired of that.
I don't know if I mentioned it, but my coordinator called me after I got my last results and said that even though I dropped 3 points on my score last time, I am still somewhere at the top of the list. I take that to be good news. I will get new labs on Nov 10, when they have me come in again. I am worried about my score dropping though, it makes me nervous.
(taps fingers...)
I did manage to get my bathroom all sparkling clean and disinfected the way I wanted it. It makes me smile. I don't even want to go in there anymore. And I keep trying to stay current on house projects we have going on. Nothing big.
Today I have been on the waiting list for two years and two months.
Well, that is all.

Monday, October 11, 2010

Sick and Tired

So, pretty much every fiber in my body hurts these days. Ever since I took the beating from the hardwood floor, I have slowly slipped backwards. My muscles ache and my calves seem to be wrestling with edema. On top of this, I've been fighting a cold which I finally gave into yesterday. Every time I blow my nose I get a pounding headache and there is blood from the damn coumadin I am taking. Not just the watery kind that I sometimes get, but the very thick gloppy blood. It is bright red.
Lois and I worked on the molding yesterday and I probably have a couple hours left today, thank goodness. It should actually go pretty fast now that I have the bay window out of the way. The living room will look really nice when we're finished.

In other news, my MELD score changed considerably. I went in Friday morning and had my standard order taken. Around 4:30 that afternoon I decided I couldn't make it through the weekend without knowing my score. I was able to call the lab and one of the techs looked up my name and asked me what I wanted to know. I told him I needed my bilirubin, my INR and my serum creatine. After that I called Lois and had her get on my blog and call up the MELD/PELD calculator. As Lois typed in the empty fields, I already had a feeling that my score had dropped just by reading the numbers.
"Your MELD is 20." She said.
I'm sure my silence spoke for itself and that she would have wrapped her arms around me and gave me a big hug if she had been there. 
Later on Lois told me, "It will be all right. It just means somebody else needs a liver a lot more than you do right now." 
This perspective was all that I needed, even though it was hard to think about a 3 point drop. I was happy to see that my creatine level was still in normal range. The one thing that I pay close attention to is how my kidney functions are taking this assault.
The next thing I had going through my head was how far I had dropped. Did I fall out of the range I was now in?
No. I was still in the same range. 19 through 24.
"That's a good thing." I told myself.
While all of this was a little disheartening, it made me realize that the score can change at any time. It will bounce around and you will never be certain of anything until the final moment. It also made me realize that the weakness to my body has gained momentum; what once was is clearly a thing of the past. I am physically exhausted. It is certain that things will change again over the next four weeks.