"Experimentation" by Ali Brown

A month after starting Trikafta, I had gained 15 points in lung function, 20 pounds, and a new personality.

Sort of.

Truth be told, I’ve always been impatient, a little anxious, and sometimes distracted… but not like this. My lungs felt clear—my head, anything but. I woke up with clenched teeth and fists, my head buzzing, thoughts dark, and patience gone.

At the time, I had two small children—a two-and-a-half-year-old and a newborn—and I had held off on Trikafta, unsure of its effects during pregnancy and breastfeeding. While pregnant with my second daughter, CF reared its ugly head. My lungs felt awful; I struggled with frequent hemoptysis, minimal weight gain, and zero energy. Three weeks after she was born, I landed in the hospital with a severe case of DIOS. Between that and my declining lung health, I knew it was time to start Trikafta. I could see the writing on the wall.

Or so I thought. What I didn’t see coming was trading my mental health for my lung health.

Still fresh from childbirth, I wondered if this new mental state was postpartum depression. Maybe it was, amplified by two pink pills and one blue. When the dreaded Trikafta rash hit me about six weeks in, I took a week-long break from the “miracle drug.” Within a day or two, the rash faded—and so did the rage and anxiety that had been overwhelming me. My cough, however, swiftly returned. My CF doctor suggested a modified dose, so I adjusted. My lungs cleared again, and this time, no side effects.

At first.

Then, a few months later, even on the modified dose, it crept back in—clenched fists, grinding teeth, waking up restless, uneasy, impatient, angry. Toddlers are noisy creatures by nature, and every dropped toy, shout, or slammed door sent vibrations through my teeth. My heart raced constantly, my thoughts spun. It felt like I was being chased by a bear, even when nothing was happening. I didn’t feel like crying much, but I sure felt like screaming.

I worried: Is this just who I am as a mother now? Grinning and bearing it but screaming on the inside (and sometimes on the outside). Maybe this is just what happens when you have more than one child. Maybe I’m not the gentle mother I hoped I’d be—the mother I was with my firstborn.

I adjusted my dose again. My patience returned. My mind quieted. Relief.

Fifteen months after my second daughter was born, I became pregnant again. Trikafta baby boom? Maybe! Either way, it was a joyous occasion, and I had a healthy pregnancy with clear lungs until the very end. If you’d told 18-year-old me that I’d be a mother of three, I wouldn’t have believed it. I’d never even heard of such a thing—a mom of three with cystic fibrosis! Post-Trikafta, it’s more and more common. No small miracle to me. 

Now, a year postpartum with my son, I’ve had to adjust the dosage once again. I’ve dropped the blue pills entirely and take just one pink pill every few days. My lungs still feel clear for the most part, and on the days I skip Trikafta, my mind feels lighter—though never perfect (was it ever?). I brace myself for the morning after a dose, knowing my mood can shift within hours. For now, deep breathing, prayer, time outdoors, and earplugs are my strongest allies.

Some days, I fantasize about stopping Trikafta altogether. But when I remember what my health was like before, I know it’s not realistic. I couldn’t care for my kids with the CF lungs I had—not in the way they need me to. I remind myself that being able to take deep breaths is a gift, one I hadn’t known for a long time. I remind myself how painful it was to be separated from my newborn while hospitalized with CF complications. I remind myself how much time I spent each day just getting through treatments and worrying about disease progression. I remind myself to be grateful for this imperfect drug. 

But my kids also need me to be patient, tender, and resilient. So it’s a balancing act and a bit of a "how low can you go" experiment with my dose. Wish me luck.