Yesterday I had quite a busy CF day. Not only did I have a clinic appointment, but I also had my drug study appointment as well. For those of you who don't know, I am currently on the head-to-head TOBI vs. AZLI study. I was assigned TOBI, which was no big deal because I'm already on it and the only difference now is that I get paid to do it!
First was my clinic appointment. I've been feeling a little off the last couple of days and after describing my symptoms, the nurse was worried that I may have the flu (which was later dismissed by my doctor). I wasn't feeling all that confident for my PFTs (click to see video of old PFT test) but it's clinic and that's what I went there to do. I'll spare you anymore story and just get to the good news: I blew my highest FVC since 2005 and my highest FEV1 since 2007!!! My numbers were 83%/68% using the same module that I used prior to this year. When adjusted to this years module they were still 80%/67%. To see a full history of my PFT scores please click here.
The second part of this story is also quite interesting. Remember that I also had my drug study appointment later on that day. Well at the drug study appointment I also had PFTs and get this, they were 4% LOWER. In just three hours my lung function dropped 4%? No way. That tells me (at least) two things: PFTs are finicky tests that do not always produce completely accurate lung function numbers and they were also done using two different machines which can also produce different scores. I often "preach" not to put too much weight on your PFTs because of this exact reason. It's SO much more important how you feel. Chances are, if you feel great, your PFT's will reflect that. Sometimes when you feel like crud, your numbers will reflect that also. It's not always the case however, yesterday I wasn't feeling all the great and ended up having my highest numbers in YEARS.
For me, it's ultimately how you feel and if you can maintain your energy to take care of yourself. My last hospital stay my PFTs weren't down at all, but I wasn't able to exercise and run the way I wanted to. My energy and drive were zapped. But after 2 weeks in the hospital, my numbers rose just a bit and I was able to get out and start on my exercise program again. Since then, my numbers have been on the rise!
I really hope that this can serve as a source of inspiration to those of you who are just thinking about starting a running program or being more faithful with your treatments. Take a look around, there are a countless number of CFers who have shown that with a little bit of hard work and commitment you CAN make a difference in your lung function. But here's the deal, no one can do it for you. It comes down to a choice that YOU have to make for YOU....question is, are you in?
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