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.
Interesting. I have learned to not depend on percentages because the percentage differs depending on what the projected expectations are. But if you watch the liters of air then the numbers usually are pretty close and accurate~ My micro spirometer gives me liters, so I just track those numbers. I HATE math as well, so I feel your frustration :) Post transplant carefully tracking your FEV1 is VERY important.
ReplyDeleteI am laughing--and all cfer's know how dangerous that is. I got a gizmo like that a couple of years ago and by looking at the numbers in the space of 10 minutes I went from buff to near death. I couldn't get them to remain consistent to save my life or my sanity either. It is now in the back of my "cf gizmos that seem awesome but really aren't" drawer--hanging out with my flutter. At least they keep each other company. Tootles :)
ReplyDeleteOOPS...sorry about the deletion. I thought I could correct a typo without anyone being the wiser but I got caught. Who knew a post you didn't want to show up would show up as not showing up....argh.
My clinic is actually part of a study to see if having one helps compliance, catching exacerbations earlier, etc etc - and my MD held it back from me and said, "I hesitate to give you this because I don't want you to become obsessive over it." We all laughed, ha, ha, ha. How very right he was.
ReplyDeleteWe're "supposed" to do it at least once a week, and then every day if we start feeling bad or it drops X amount, but I finally asked and got the OK to just pay attn to my body and use it, say, to do home pre-and-post albuterol tests to check asthma v. infection, and to have on hand to check to see whether it's IV-worthy bad, etc etc.
Doing it every week caused me to psych myself out ("AH! It's low! But I've felt great!" and "WHAT?! I feel HORRIBLE?! WTF stupid high number?! Is this all in my head?!" and "I KNOW it's actually better than this, must be my technique, so I'll just keep testing until my face turns purple and my heart jumps out of my chest to get the "right" number"...followed by "Oh God, they download these and track them, they will see I don't do it as often/they will see that I've done in 17 times in 20 minutes").
It even made it harder to "just keep swimming" when I felt bad but there was nothing more I could do and just had to wait for drugs to do their thing; something about doing, and feeling, the PTFs, then seeing the results, made it harder to keep psyching myself into going on about my day (kind of like when you know you have a fever, but otherwise feel mostly fine, so you go on about your life, but then take your temp and see the number and are rendered useless...or maybe that's just me :)
Great to have to save me a 3-hour drive to blow and confirm what I already know. Horrid to have on days when I'm feeling masochistic.
So... I almost hesitate to weigh in, but since math isn't my wife's favorite either, I created this Google Doc (http://bit.ly/cwFeIR), and you're welcome to use or copy it.
ReplyDeleteThe thing I've noticed more than anything else is that her technique has become more consistent, and she's able to maximize her performance because of the practice. And it seems that any kind of practice with the lungs is a good thing - pre- or post-transplant.
It's always interesting how different clinics have different protocols - the importance of the home spirometer wasn't critical for ours - especially with the danger of obsession that was an early concern for us too. Turns out that she's been able to accept regular use and look at overall trends rather than any one negative or positive number. Not every test is going to be higher (or lower) than the last - we're human - variation is normal.
I wish you the best in the battle against that obsession - feel great and forget the number! And I'm confident you'll be getting exactly the right lungs when they come!