I am "Exceptional"
Now *that* is the blog entry I've been waiting a long time to post! I received word yesterday that UNOS granted my exception so as of yesterday afternoon, I have moved from the bottom of UW's lung transplantation waiting list to the very tippy top. Any new lungs that come in from here on out will be run past my profile before anyone else's to see if they are a fit (literally). Again, the main criteria they use are blood type and size and then there are other factors they will use to find the best possible match for me. There is no way to really estimate how long it will be before I get The Call: could be days, weeks, months. But I'm definitely on a high alert now, for the first time since I was listed last year, and I will have my phone on my person FOR SURE from now on. And most transplant patients get at least one "dry run" call. A dry run is when there's a set of lungs on their way to the hospital so they call the potential recipient and have them come in to the hospital. But although they've run tons of tests on the lungs and there has been constant communication between the donor hospital procurement team (the amazing Life Center Northwest) and the UW team, it's not until the surgeon, Dr. Mulligan, actually looks at the lungs himself, that it's really a go. Some people have gotten as far as to be anesthetized only to wake up and sent back home...but they will NOT make a cut until those lungs are deemed perfect for me!
I'm on a roller coaster of emotions. This feels a little like when I've gone past my due date (twice) and you just feel like you're on borrowed time -- it could happen any minute and the nesting instinct is kicking in. I think I'm finally going to be able to go through some of my piles of junk around the house and throw things away. I'm also getting a list a mile long of things I'd like to get done, everything from buying a frame for my picture with Jay and President Clinton last month (what, you didn't see that? I'll post it below!) to updating my kids birthday books to cleaning out emails to painting our bedroom. The one huge thing that I'm feeling good about today is the support from family and friends, those who are now also on high alert and ready to drop things in their lives to help us through the post-surgery time.
I don't want to go on and on right now (did you see that list of stuff I have to do?!) but I'm sure I'll have more thoughts as I go through my notes from all the transplant work-up we did a year ago. And, as always, if you have questions about this, I'd love to hear them -- it helps organize my thoughts, too.
I'm on a roller coaster of emotions. This feels a little like when I've gone past my due date (twice) and you just feel like you're on borrowed time -- it could happen any minute and the nesting instinct is kicking in. I think I'm finally going to be able to go through some of my piles of junk around the house and throw things away. I'm also getting a list a mile long of things I'd like to get done, everything from buying a frame for my picture with Jay and President Clinton last month (what, you didn't see that? I'll post it below!) to updating my kids birthday books to cleaning out emails to painting our bedroom. The one huge thing that I'm feeling good about today is the support from family and friends, those who are now also on high alert and ready to drop things in their lives to help us through the post-surgery time.
I don't want to go on and on right now (did you see that list of stuff I have to do?!) but I'm sure I'll have more thoughts as I go through my notes from all the transplant work-up we did a year ago. And, as always, if you have questions about this, I'd love to hear them -- it helps organize my thoughts, too.
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