Thursday, May 20, 2010


For two years now I have been slowly getting sick. In those earlier days before they started bombarding me with medicine, I would get awfully sick. Sometimes I would curl up on my bed in a ball and cry out in pain. I had no idea what was happening to me. The pain would come and go and I just assumed I was sick. As it turned out I was sick. Very sick.
Lately I have felt a small change. Yesterday I woke up nauseated, thinking I was going to be ill. That is a symptom I haven't had for a very long time. I have also been very tired lately. That symptom is nothing new. I have been tired all along. But this has been a new kind of tired. It carries a different weight to it and it has been relentless.
I had new labs drawn on Monday. We are still checking my INR for the coumadin. This week we also checked my MELD score. The last time we checked it -- three months ago -- my score was 11. My new coordinator decided that we would wait until January before we checked it again, but then Lois talked to her about how often it changed and my coordinator agreed to let me get it checked again. Today she called to tell me that the coumadin is looking good and that my MELD had risen considerably. It was 18.
As I thought about the number, knowing that 23 to 25 can be a good average range for a transplant in this region, my heart started doing pitter-patters. And then my coordinator said something that I could barely comprehend. "Your placement on the list puts you at number nine, or thereabouts."
I understood what she meant by "thereabouts" because thereabouts implies all the factors involved in a MELD score. It is the derivative of every other person involved. It is weight and size, it is a score of someone who is at 40 and someone who is at 20. It is everything that happens between now and then. Illness. Infection. Death and dying. The list goes on.
Listening to my coordinator I suddenly realized that I was crying. Time seemed to be catching up. My thought was, "I am closer. This is happening."
I found Lois and told her everything.
Hugging each other, Lois asked, "Does this make it seem more real now?"
With my heart breaking, I could only nod yes.


  1. Oh, honey. I'm so happy for you. Crossing fingers and toes and eyeballs.

  2. It is sorrowful that you have to get sicker to hopefully be eligible to get better.

  3. Spatula,
    I don't think it's wise to cross the eyeballs. It could cause headaches.

    Supply and demand. Liver disease is one of the nations biggest illnesses.

  4. I am loving the number 9- and although my response is a bit delayed- I am sending lots hope and love-

  5. It was sad to hear you are getting worse, but also great that your MELD scores are increasing. Eric and I went through this same reaction when his did this.

    Keep the faith that you will get that transplant, and trust God that you will.

    Having a positive attitude is everything and as our coordinator said, without it -- there won't be a transplant. So hang in there friend.

  6. Im glad things seem to be heading n the right direction. But please dont start counting time and such. I am sure you are aware the numbers can go down as well as up. And transplant isnt always a cure all type of thing. That being said, hopefully it will make you feel better than you are now. :)

  7. I can certainly empathize with what you're going through. As Debi said, we hit that same reality, or should I say it hit us. Facing my mortality wrung every single emotion out of me. Eventually I arrived at a more peaceful and accepting place, but until that point, it was a roller coaster ride.

    Your post points out the unusual nature of liver transplants. End Stage Liver Disease is the only one I know where you are congratulated for getting worse. Your blog is named appropriately--it is indeed a paradox. While waiting on the list, our coordinator told us of one individual who was hoping they got liver cancer on top of their liver disease so it would move them higher up the list. Madness!

    Please know that Debi and I will be praying you receive a new liver quickly. While there are many things to deal with even after a liver transplant, it still beats the alternative.

    May you stay strong in spirit.