OK, quick housekeeping note: the modem on my Mac was fried during a thunderstorm, so I'm sending it off to Apple to be fixed. Blogging will, consequently, be light on both my sites, if not totally non-existent. So I haven't forgotten about you all, it's just I don't have a computer. :)
Anyway, back to the story. So shortly after the insurance brouhaha was resolved, and we returned from Pittsburgh, I was officially "listed" on the UNOS list. I 'debuted' (hah hah) at #1 on the AB positive lung list, so if any came my way that I could use, I was the first up. But, me being me, that wasn't going to be easy. For one, I was AB+. That's a pretty rare blood type. Second, I'm a "small animal" (thanks Piglet) so we needed small adult lungs.
Once you're listed, your life revolves around the phone. Karen had everyone's cell, home and work phone numbers (even my brother and sister). When the phone rings you get kind of jumpy. We knew that most transplant calls came at night/evening, but technically it could come anytime. I went to bed with my cell phone--I'm not even kidding. Once I was cantoring at Mass when I saw Dad get up and scurry to the vestibule to answer his phone. Well I just about had a heart attack on the altar. It turned out to be nothing, but I told my dad not to do that ever again unless it was the call. And we knew when that would be cause Karen would call us, and we had her number programmed in every phone, too.
To top off all this fun waiting, it was also budget time at work, which is the busiest time in the whole 2-year GA (it's coming up again next year...oh, the joy). My boss (the Chief of Staff) and my immediate boss (Maggie, the Communications Director) both knew about my situation (OK, the whole Senate did, because I had to ask people to donate extra leave time so I'd be covered) and they were, consequently, also in tune to my cell phone. Once it rang during session and when I left to answer it, Maggie'sface mirrored my own. It was kind of funny, having so many people waiting on my phone to ring. Teri (the Chief) was hoping that I'd make it until post-budget, and that I did.
By this point, Dr. M had "suggested" that I be on supplemental oxygen at night "if I needed it." This is what I loved about Dr. M; while she could lay down the law (and did) when she had to, she also made things seem more like "suggestions" than commands. While I don't know if the oxygen did me any good, we still did it.
On June 2, the day after we passed the budget out of the Senate (and some of the staffers were at work until 2 a.m. writing the release), I went into the hospital for a few weeks. My body was just worn out at this point, and all those "opportunistic" infections were having a field day. The other side to all this was the only drugs that were even somewhat effective were also, slowly, eroding my hearing, which kind of annoyed me, because I'm a singer. I'm in Communications. I need to talk and hear other people talking. But at this point, it was a choice between surviving and hearing. I chose surviving. We could deal with the ears later.
I think I was in the hospital about two weeks, until I went home on IV therapy (of course!!!) and the oxygen, even though it was per need only. Dr. Rusakow, the attending for June, did a stat study on me the night before I was discharged, where you wear an O2 probe all night and the machine mesasures your oxygen saturation at different intervals. The test came back OK, and right before I left he looked at the monitor and saw it was registered 97%. "I don't know anyone who's on the list for a transplant and has 97% sats without oxygen," he said.
"Yeah, but I'm weird."
So I went home with the fun drugs (that we actaully had to mix and constitute at home, because it was so unstable you couldn't make it ahead of time...that was fun) and the oxygen compressor thing, which ended up in my bedroom and raised the room temperature about 10-15 degrees. This would've been great in, say, January, but was not so great in June, especially when it was 75 degrees at night anyway. The tiny electric fan I had didn't help much.
So there was nothing to do but wait. I was started to get a wee bit anxious--what if I didn't get them? What if I became one of the 18 people who dies everyday waiting? I saw Dr. A every week and he kept saying that we'd find them. I trusted him, but I still didn't know. Work was getting ridiculous. Even though I went every day (why, or how, I did that, I still don't know) but I only worked until 3:00 because I had to go home and get drugs. There were some days I just could not get there, and Maggie was good about that, but those days didn't happen too often. Most of the time I was just trying to stay awake. I couldn't walk from one end of our office to the other without feeling like my heart was going to beat out of my chest. It was rough sledding. Each day that I woke up and the phone hadn't rung was horrible. If I could have willed the phone to ring, trust me, I would have. So would the 90,000+ poeple on the list.
June turned into July, and eventually my biggest pasttime became sleeping. I would spend entire Saturdays camped out on the couch, just sleeping like a cat. I hated doing that, but it didn't seem like much else was going to happen. Fourth of July was horrible--hot and muggy. My friends wanted to walk the 1/2 mile or so to downtown Pickerington to watch the parade, but I couldn't a) walk it and b) sit in the sun for 2 hours. So I drove home, feeling frustrated because my body was totally prohibiting me from doing anything at all.
Even shopping, one of my all-time favorite things, was tough. Easton, an outdoor shopping center in Columbus, is one of my favorite places to go, period, because it has great shops, food, and a theater and movie complex. it's a great place. But I couldn't do it without my dad dropping my mom and me off at one store, picking us up when we were done, and then driving us to the next one. It was very exhausting. One Sunday night, July 10, we went to three different stores, had dinner at the Irish pub (mmmm), and I bought a new bag for work. We left around 6, my body totally exhausted.
Around 8:00 I was perched on the couch, slowly taking my evening pills so as not to disrupt my stomach, and was thinking of ways to get out of work the next day. OK, so most people do that, but I was trying to think of something better than "I just got run over by a truck."
Then the phone rang.