That all said, I certainly have a lot to celebrate and a lot to be grateful for. All those things considered, I've done (and am doing) impossibly well. Not only am I still alive (which, I honestly didn't think I would be by now), but I am about as healthy as a twenty-two-year-old can get. My FEV1 currently sits between 115%-130%, I'm maintaining and even gaining weight. My tolerance for heat, cold, smoke, dust, moisture and other nature-related things that once really bothered me, is now at an all-time high. I can hike in the foothills and the mountains for miles without getting tired or woozy. The list goes on.
Trikafta really lifted the veil for me, in many ways. Prior to Trikafta, I didn't really think I was that sick. Sure, I felt like dogshit most days, but I was still a long ways away from requiring a lung transplant, and so long as I stuck to a super clean and calorie-dense diet, I could stay a few pounds heavier than clinically starving. But, what I didn't realize was just how bad things actually were, until Trikafta came along and completely changed my body.
Virtually overnight upon taking my first dose of Trikafta, I went from being an achy, scrawny, coughy, gassy, sleepy, mucus machine with no appetite, to having the energy, strength, and appetite of a fucking grizzly bear. It completely caught me and my entire family off-guard, but in the best possible way. To say my grandparents were impressed when I devoured an entire salmon, a half gallon of whole milk, an entire bag of frozen veggies, and a glass of eggnog as a dessert, all in one sitting during my first week on Trikafta, would be a major understatement.
Thankfully, that raging appetite eventually wore off, but everything else, from my lung function, to my energy, to my weight and height, to my sense of smell, etc, never stopped improving over time. Sure, my charts have since plateaued a little bit, but my health is still improving with time, almost four years after taking my first dose of that $350,000-per-year medication.
Yes, while it's been nearly four years since I took my first dose of Trikafta, I can't say I've gotten used to it yet. But, I'm working towards becoming a functional, independent adult, free from the shackles of Cystic Fibrosis. Though, I will say, freeing myself from my pre-Trikafta mindset has been... difficult... to say the least. Cystic Fibrosis has been my prison for the vast majority of my life, so far. I grew up with it. I grew up fighting it. I grew up being perpetually sick from it. I grew up being told that, even if I did everything right, and did everything in my power to stay alive by perfectly sticking to an extremely rigid routine designed to keep me alive, I would almost certainly be dead by my 40's. Though, given my health at the time, I was told that I could end up on the lung transplant list much sooner than later.
But, then, literally out-of-the-blue, the FDA announced that they'd approved a medication called Trikafta early, because of how promising it looked in the trials. A few months later, I got my first box of the stuff, which was when everything radically changed in ways I could've never prepared myself for.
Now, nearly four years later, I am still very much petrified. Though, not as petrified as I was when I first began to realize just what Trikafta did to me. Sure, I’m not yet a full-time college student, and aside from the occasional pet-sitting gig, I don’t make any money. Still, I’m four semesters and over twenty credits deep into my associate’s degree, and I’ve passed all my classes, so far, with flying colors.
I’m comfortable calling myself a college student, and I’m starting to narrow down my list of “possible careers”, based on what I can do, and what I think I can tolerate making money off of.
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