This isn’t what I expected…
I’ve wanted to share something I experienced recently, although I don’t think my mind has fully digested it yet. The week before last, I was able to do PFTs in a lab for the first time in over a year. Throughout this pandemic, I haven’t known what my lung function is which, in a way, has been nice.
I’m a firm believer that, while PFTs are important and can certainly be a helpful tool, they are still only one piece of the puzzle. There are many other things that matter just as much or more: how well I feel, my stamina, whether I have the energy to complete the things I need and want to do, etc.
We know that CF is a progressive disease. The narrative has always been that as the body ages and this disease takes it’s toll, lung function will decline. This is what I’ve learned to expect. This is the way I’ve seen things play out for myself and for others.
When I did PFTs recently, I saw the highest number I’ve seen in over a decade. My lung function has increased on Trikafta, which isn’t entirely unexpected; it’s happened for many people! But seeing that number really struck me. I know I’ve been feeling well. I know it’s been a good year for me. I know I’ve benefitted from Trikafta in many ways (see all the things listed above). Even still, that number, — one I don’t generally put too much stock in — brought immediate tears to my eyes.
This wasn’t the way it was “supposed” to be. I’ve learned to separate myself from many of the stories we hear about CF. I know that my experience will be unlike anyone else’s. Our experiences are as unique as each one of us. But to see and feel myself exceeding expectations and defying the odds still feels unreal.
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