Continued from previous post….
Living with cystic fibrosis feels as if I’m desperately clinging to the side of a mountain’s ragged and crumbling edge, my face pressed against its side as I hold my breath with arms outstretched wide - my hands desperate to find something that will hold my tired grip. I can feel my toes tightly curled within my shoes trying to anchor myself to the thin rocky ledge which isn't wide enough to fit both of my feet. I feel the wind daring to pulling against my body as I try and steady myself. If I lose my focus to the rocky terrain that surrounds me, and I catch a glimpse of the world below. I feel myself begin to sway unsteadily as my body becomes disoriented - losing any shred of balance as I feel my own body being pulled from beneath my tight grip.
Then, this drug called, “Trikafta” came into my realm of possibility. And I dared to cautiously dream - to not only release my grip from the side of this crumbling mountain called CF, but to reach out, grab hold of a new ledge, and begin to climb. That I might look out at the beautiful vista before me and deeply breathe in a beauty I never thought possible. But, I also knew that these lungs are filled with decades of irreversible scarring and bronchiectasis that stubbornly have become a part of who I am. This craggy landscape that lives within the walls of this chest simply cannot be transformed within day. Or, possibly ever. But, I know the progression of CF. I’ve watched it take its merciless toll on those I love and a community for which I will be forever connected. I knew, with no guarantees, Trikafta was my only chance at slowing the unforgiving progression of CF within myself.
Changing the Unchangeable
So, I took my first dose of Trikafta 28 days ago and cautiously hoped - guarding my heart and my mind against exaggerated expectation while staying rooted in grateful, yet pragmatic possibility. Woven within the freefall of life-defining numbers etched within the walls of my being. Is the unchangeable changeable?
I had a lung function test yesterday in which I blew an FEV1 of 56%. This is an 8% increase since my PFT in November and since beginning Trikafta. I haven’t seen over 50% in a year, and a value even close to 56% in over five years. I have been unable to keep it anywhere near there as it has always found its way back into the 40s for which I’ve always fought to maintain. I’m speechless and my heart is overwhelmed with gratitude at this opportunity to see such a number again. It’s as if in that very moment I felt my body relax a bit, and I could merely enjoy the view from where I am at. That I could literally and figuratively breathe. There are still no guarantees in this life with CF, but for this moment, this is hope realized in a simple set of numbers - numbers with which I hope these lungs will continue to wholly embrace.While I may feel like CF itself is a mountain, I actually haven’t seen the mountains in many years because of these lungs. I can only dream that with such realized hope that I may see such a beautiful perspective born of possibility again while fighting for more tomorrows for everyone with CF so they also may enjoy such a breathtakingly beautiful view. Love to you all.
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