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.


  1. Big hug. Breathe. Take each day as it comes.

    Easy for me to say, but that's what I got... HUG HUG HUG HUG.

    What feels good to your body? Are there moments and places in your body where you can feel some comfort, whether by pressing a cool wet cloth to something hot, or by letting wind go over the skin, or by sinking into your favourite place to lie down? Wrapping a thread of bright color around your wrist?

    Just some thoughts...


    I'm glad to see you post, I wonder how you are doing in between the posts.

  2. Anna,

    Thanks, I think a colorful wristband is just what I need. I have been feeling very weak and tired, but I think this cold has really knocked me for a loop.
    Hope you are doing well and everything is good.

    I agree. :)

  3. Try your best to focus on the positive. Savor the good moments in your day. My husband has been sick more often than not the past 3 years, and it has been a very tough time. But we are slowly learning to take things one day at a time -- one moment at a time -- and to squeeze the joy out of the ordinary tasks of life. He is pretty much unable to do anything but the ordinary, so it is a necessary thing, and it has been a learning experience that's for sure. But I can honestly say that with God's help you can come to a place where you can find something good in every day. Keep your chin up. Better days are coming....

    Linda, Wichita

  4. oh sweet friend...I am praying for you would be MORE, far MORE than enough to just feel the way you do...but the torture of waiting and sick must one be to be "sick enough"? But Lois is wise...someone else needed a sacred liver more...but yours will come...and God bless the soul who leaves his or her body so that you will be able to live.

    rest, rest, rest.

    gentle steps

  5. Linda,
    I am always happy to receive feedback from you. I am however sad to hear that your husband hasn't been feeling well for so long since his transplant. I truly hope that this is just a setback and that one day - hopefully soon - that things will begin to turn around for him. You are both in my prayers.
    I did get word from my coordinator today and she said that even though my score went down, I am still one of those at the top of the list.

  6. Laura,
    Yes, Lois is very wise. I love her dearly.
    Thank you so much for keeping in touch with me. As awful as I feel right now, I know it will get better. I have been sleeping for the past two days and I think I'm starting to turn around.
    I am wishing you well and I hope Rosewillow's
    Nashua Crop Walk for Hunger
    is going well.
    My best to you and your family.

  7. So sorry to hear that you have been feeling under the weather. I hope your cold starts improving soon - they are annoying, aren't they?

    I cannot believe you guys are working on home improvement projects. Do you need help?!?

  8. I haven't check this blog in ages and my jaw dropped when I read about events over the past 6 months or so. I'm especially floored by the change in your MELD score and understand all that it means, both the good and the bad.

    Reading your symptoms brought back a flood of memories - the nose bleeds (people staring at you because they happen spontaneously and they notice it before you do); leg cramps (sadly, nothing really worked for me, either, and the cramps are outrageously painful); edema; and most of all, fatigue. I also craved soup - it was the only thing I wanted to eat.

    What may I do to help? I'd like to help if I can. I'll be praying for you and your family.

    Be kind to yourself now. No guilt about sleeping, fuzzy brain, asking for help putting on socks (leg cramps sometimes means someone else needs to do this for you), and whatever else you need. Simply staying alive can feel like a lot of work now.

    Please shoot me an email and give me your email address, if you don't mind. I don't know that I have the correct email address for ya.

    Oh - hey - have you checked UNOS to find your transplant center's status for liver transplants? You can see how many people are in your MELD score range, have your blood type, age range, etc. etc. If not, let me know in the email and I'll give you details about how to find it. Discovering this resource before my transplant gave me a small sense of control, whereas everything else was seemed chaotic.

    Lots of hugs to you and your family,

  9. Just to wish you and your beautiful family a Merry and Peaceful Christmas and a New Year plenty of health.

    My thoughts and prayers are with you all.