Today marks two months off the cystic fibrosis “miracle drug,” Trikafta, and BOY have there been changes. I like to end things on a high note, so I suppose I’ll start with the not-as-good changes first. And that description is a bit of a misnomer because I expected these things as my body returned to CF mode.

The negatives include:

• Increased cough
• Frequent shortness of breath
• Lower energy levels

So, in other words, CF symptoms. I don’t mind coughing during the day (though I detest coughing fits in public places). But lately I cough for a prolonged period during the middle of the night, which is frustrating. When I went for a CF checkup at the end of May, my pulmonary function test (PFT) results had dropped to what they were before I started Trikafta in 2021. Again, I expected this would happen. I just hoped maybe the benefits would stick around longer.

The shortness of breath is my biggest complaint, as it’s a daily occurrence. I’ve added several inhalers back into my therapy regimen, but I still feel like I’m struggling to breathe, even at rest. Today I have an echocardiogram to make sure it’s not heart related. I REALLY hope we can figure this out because it’s hard to ignore something that happens every time I inhale. And I generally prefer to continue breathing.  

Together these things cause me to have less energy, but that’s why naps were invented.

Now, for the changes I’m most grateful for/make me want to breakdance if not for my leg:

• I no longer have intrusive thoughts like “I hate myself” and “There’s no point to anything.”
• I wake up without an overwhelming sense of dread.
• Life feels much more doable—even exciting!—which says a lot given the state of … things.

Can we all agree that this is AMAZING? I don’t think I realized how volatile things had become in the ol’ noggin. I was hypercritical of everything. I judged my thoughts, my feelings, my body, my capabilities—my everything, really. It was like an entire chorus of hecklers was squatting in my mind, ready to pick apart everything I did or didn’t do. Now my brain is comfortably quiet. Hooray for my new old mind!

So, was it worth it? 100% YES. Even if my celebratory dance ends with a cough.