I'm going to be honest with you all: at this point most of my days are fairly routine and -- dare I say it? -- even a little bit boring. I spend a lot of my time doing mundane stuff like treatments and airways clearance and IVs and appointments and exercise. It's a dirty job, as they say, but somebody's gotta do it. And by doing all these things I can at least hold out hope that I'll be the best darn Piper I can be for the rest of the time, when I get to do fun stuff like go to dinner with friends or take a walk with my family or even hit up some of that famous NYC shopping. You know, all those things that make the "boring stuff" worth it?
But some days, rare as they might be, are different. Some days are chock full of excitement and mystery and drama and plotlines that could have been lifted straight from your favorite primetime special. Days like today, for instance.
Today I spent my morning battling pure evil.
Well, okay, maybe not really. In reality I spent my morning blowing my lungs out over and over into this little guy:
...and then trying as hard as I could to figure out the results.
What I learned in the process was this:
1) Not all FEV1 calculations are created equal. I found a variation of up to about 5% depending on which formula I used for the calculation. Not cool. And furthermore, some prodding into the lives of my CF friends (because I apparently know no boundaries when it comes to this sort of thing) revealed that most people have some experience with wildly fluctuating FEV1 percent-predicted numbers, be it between their CF clinic and their transplant clinic, their pediatric clinic and their adult clinic, or (worst case scenario) their same clinic from visit to visit. All because the center is using a different formula, not because of any actual change. This made me think that all this "what percent are you?" nonsense is in fact, well, nonsense.
2) Obsessing over numbers will get you nowhere fast (unless where you're going happens to be your local psych ward). Seriously, I'm not kidding when I say that this little machine and I had a full blown battle this morning, one in which the prize was apparently my sanity. I came out the winner, barely, but it was a super tough fight. Granted, I'm sure there are a lot of CFers out there who can properly handle the responsibility of owning a little toy like this without compromising their mental health; I, quite clearly, am not one of them. Bottom line: while testing your FEV1 at home every so often to make sure you're not slipping into some random spiral of decline might be okay, really you should just trust how you feel. Period. Not seeing that one little number go up when you're working hard might just frustrate you right out of your motivational zone, and seeing the number stay the same even as you start to feel terrible might lead you to put off some much-needed treatment.
[Edit to add: I realize that this changes a bit post-transplant and that tracking numbers becomes super important at that point to catch rejection early. This comment is really only geared toward slightly neurotic pre-transplant CFers like me.]
3) I really hate technology. No, seriously. I really, really, really do. (This one is just personal, and has more to do with the hour it took me to properly set the date on the darn machine before it would even allow me to start destroying my inner peace than it does with the actual destruction of said peace. No, I'm not kidding.)
4) If you think my dislike of technology is ridiculous, you should see how I feel about math. Here's a couple of hints: I was an English major in college, I went to law school, and the one college math class I took -- seriously, the only one -- was "game theory" (aka: math for English majors). Seriously, people, I wasted my morning doing math because of this thing! And that's just inexcusable, end of story.
So cue up the cheesy music and let's end this not-made-for-TV movie right here, because I for one have officially removed the batteries from my FEV1 monitor (and since replacing them would mean resetting the date, I think that means I'm pretty safe). And like all good dramas, I guess this one ends with a lesson, which is don't lose sight of the forest for the trees. Or for the PFTs, for that matter. Because at the end of the day it really is how you feel that makes a difference, and putting too much weight on any one little detail of that is the first step to missing what really matters.
And a PFT ain't nothin' but a number.
- 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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