take another little piece of my heart now baby

IOPO talk on local news

I went to my first IOPO (Indiana Organ Procurement Organization) presentation today. My stepmom has been doing this for several years with another woman from my clinic who is now 10 years post TX. I'd never heard my stepmom's presentation and I have never met Maria (though we have the same ENT and I know a lot about her from him - so much for HIPPA!!)

It was really hard to listen to my stepmom talk about the day my stepsister died. I'd really never heard her tell that story before.

It was May 25th, 2001 and I had put my son to bed, he was just 18 months. The phone rang. It was my younger brother. He said, "Kelly and Dan have been in a car accident and you need to get to the hospital." I asked how bad it was. He answered, "It's not good." I called my mom who rushed over to watch my son, affixed a silver crucifix to my neck and left. I'm not overly religious in a Christian sense and oddly enough, at that time of life I was really turning to the music of Bob Marley for spiritual inspiration. But the crucifix seemed appropriate and that action stands out in my mind. As a quick aside, Bob is not all ganja and beaches, you should take a listen, also, Rastafarianism has Christian roots. Anyway.

When I got to the hospital, I asked at the desk for my stepsister assuming they woud lead me back to an examination room where maybe she'd be hooked up to some monitors. But when they looked at one another and then took me to a small room where my step mother and stepbrother and a doctor sat silently, I knew it wasn't good. When the chaplain walked in, I said, "Oh God." and I knew. Kely had died from massibve trauma when the side of the car she was riding in was smashed up against a tree. Kelly was 24. She was also a tissue donor. They took her corneas and her skin, I know for sure, though I think they may have taken some bones as well. She died on the way to the hospital and wasn't a candiate for organ transplant for that reason.

It was also awakening to hear Maria's story as a cystic. Although I was in tune with her story as it is one so many of my friends are living or have lived nearing or in the throes of end stage lung disease, it still felt like this neon reminder of the path that CF inevitably takes.

I had asked my stepmom, who included my CF story in her talk - one daughter who was a donor, one who may likley be a recipient, not to call me out. It was odd to hear her refer to me in the third person though. But then when Maria spoke (who I had just met that day) I got the big fat call out when she referred to me (and pointed!)a few times in her speech. But you know, it was OK. I realize that is how far I've come in this. I was Ok with having a class of 50 teenagers look at me as the sick Cf girl.

I then registered myself online as a donor. I have been registered on my license since i have been driving, but I never did the online registry. I figured I should. Even though I usually feel like my future is neatly mapped out and the ending has CF stamped all across it, I guess you never do know.

calling out around the world

I was outed yesterday, by my own husband. Can you say AWKWARD?

We went up to a friend of mine's lake house, and took the kids out on the boat. We moored to go for a swim and I was trying to convince the huz that he should be the one to go in the water with the baby, as I am usually the one who does it. He replied with, "But you need the exercise." Our friends started laughing and saying that was "cold" and just jesting with G for what he'd said. I knew what he meant, but they clearly thought he meant it as if he were suggesting I was in bad shape (never mind that I am). So he said, "No, for her CF." Which of course they don't know about and quickly said, "Her what?" But, thank goodness, the manchild called our attention out toward the lake and the situation was diffussed - not withstanding the hairy eyeball I gave my husband.

I don't know how to better handle these situations. I find them terribly uncomfortable. The last thing I wanted to do was explain Cf on a boat in the middle of a fun, sunny day. I wish I could be comfortable enough in my own skin to just be matter-of-fact about it all, but I am not.

I've decided it's pretty pertinant that I go on abx before CA, especially if I am not going to take my vest. I don't want to, but only because I want to drink or imbibe in whatever other treats might come my way, which doesn't make sense, but hey - none of this shit makes any sense, does it?