April 15, 2009: I'm pretty sure most people think of today as tax day. (Or at least most American people anyway . . . some Italians probably know it as da Vinci's birthday, and the Germans might remember it as the day Bergen-Belsen was liberated.) It's also the day major league baseball was integrated, and the anniversary of insulin hitting the market for all you diabetics. For some political activists today is a major protest day and for one very lucky portugese water dog it's his first full day as official "first puppy." It's the day after my dog got a really really bad haircut that caused my mom and I to nickname him Sammy the Rat (his self-esteem will probably never recover) and it's the first night I have plans with friends since getting sick this last time. Oh yeah, and it's exactly one week since I last set foot in my office.
But hey, who's counting?
Last night I decided I was over being sick. I was being kinda whiney and pitiful and I just got sick of it (pun intended). So this morning I got up, ate breakfast, tackled my ridiculous morning IV schedule, and moved my ass out the door to the gym. I didn't do too badly, honestly. 25 minutes on the treadmill with an incline of 8, and I went 1.8 miles. I would have gone faster, but I'm trying really hard to keep my heartrate in the healthy cardio range for me (145-160) without letting it go up into the "holy shit calorie burning" range (165+) that my doctor wants me to avoid. So I kept myself on 2.5 liters and forced myself to slow to a walk everytime it threatened to go too high. Then I cooled off at a walk for 3 minutes to take my distance up to an even 2 miles. Anyway, I'm no Lance Armstrong obviously, but I'd say 2 miles in the middle of an exacerbation isn't doing too badly. And when I talked to my tx doctor the other day he told me that I was strong enough that I wouldn't need any rehab pre-surgery, which I took as kind of a gold star for my homework. I'm probably being a little bit overly self-congratulatory here, but I'm okay with that right now.
I'm not so okay with not working. That's gonna be a problem. There are all these factors to consider right now, and I'm feeling a little overwhelmed with having to make these choices. I know I'm lucky to have them, but it's still a lot to wrap my head around at 27. I'm not going to waste space boring everyone with this again, but yeah - it's still on my mind.
Last night I went to town looking up every single piece of information I could on my new little friend achromobacter xylosoxidans (which I have not-so affectionately termed "achromobastard"). It looks like it's another pain in the ass to deal with, but not associated with any significant prognosis changes for most CFers. And it's not a counterindication to transplant, apparently, which is huge, especially since the first thing I found on wiki simply said: "The Achromobacter are a genus of bacteria, included in the order Burkholderiales."
Yeah, I think my heart pretty much stopped when I read that initially. Apparently I'm easily freaked out. But I'm slowly trying to figure this one out, and slowly trying to figure work out, and slowly getting back into exercise, and probably slowly going insane in the process. But that's nothing new anyway ;)
I see my doctor tomorrow in the brand new CF center at Columbia Pres. I'm hoping I get to blow PFTs - I blew a 35% after 5 weeks last IV course, but never did them again after the full 6 weeks, and then I didn't do them at the start of this infection b/c my doctor doesn't really see the point of freaking me out with low numbers when we know already there's an underlying infection and we have to treat it. Have I mentioned that I think she's wonderful?
Anyway, here's hoping I can post again tomorrow with numbers back up to baseline, or at least pretty close. And maybe I can kick this achromobastard to the curb for good and not have it become another chronic aspect to this whole CF thing. Because if I'm really honest, I think I'm due for a break at this point.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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