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.

Tuesday, May 11, 2010

Plus ca change, plus ce le meme chose

A lot has been happening and yet nothing at all.
Last week I celebrated 2 years of not smoking. I have also been on the waiting list for 20 months. It's hard to believe so much time has passed by.
I started taking Enbrel again and I wouldn't let Lois give me a shot for 2 days because I'm a big baby and I hate needles. Now that we've picked a day I have to do it every Thursday. I'm sure that once the psoriasis starts getting better I'll be happy about it. In the meantime, I will probably whine for the next several months. The last time I was on it, I steadily got worse from week to week and dreaded being stuck. I would almost cry every time Lois gave me an injection.
(Taps fingers)
My coumadin labs were all berserk and I am getting labs drawn once a week as they adjust the dosage. I've had a few bloody noses, so something is happening. One day I had a bruise on my hand about the size of a nickel and then it disappeared a couple of days later. I wonder what it does if you have already had varices? My last endoscopy showed varices in the stomach. That kind of makes me nervous.
My muscle cramps have returned. I wondered what would happen when they took the medicine away that was helping. It really is a bummer. They usually come when I stretch and it can be a rude awakening while lying in bed.
The sky, however, was fabulous tonight. And the cat with the really good fur is letting me rub my bare feet on him, so life could be worse.