What I Wish I Would Have Known Before Trikafta

Although I had been told that my coughing would stop, I wish I had known more about the transformative change that Trikafta® would have on my life. It has almost made me wistful for the time when I was sick, back when I was more in tune with what my body was experiencing.

| 6 min read
Amanda laying down on a hospital bed smiling.

When I was approved to start Trikafta®, I thought I knew what I was in for. I had heard rumblings from my doctors and people who had participated in the trials and some friends who started taking it before I did. I heard the same thing again and again: "It's amazing. The results are incredible. The coughing has stopped."

A life without coughing wouldn't that be nice? As I barreled toward another winter exacerbation in December 2019, I was desperate to get my hands on Trikafta. I knew to expect what's known as "the purge" in the first few days. I remember being in my therapist's office when mine began and everything that had been stuck in my lungs came flooding out, like a dam that just broke. It lasted all day but by the next morning, I made no sounds. There was no junk coming up, no wheeze, and no pain. A day before, I couldn't walk more than a few feet without a deep, painful, unrelenting attack of coughing. I was visiting my parents during this time and while normally our house was constantly buzzing with my brother’s — who also has CF — and my coughs echoing throughout, suddenly it was eerily silent.

Shortly after starting Trikafta, I was heading into a new job and I couldn't wait because I finally wasn't going to be known as "the coughing girl," unlike previous jobs where that was all people could remember about me. I was ready to start fresh with a new identity. Everything was coming up Amanda. For the first time, I was able to walk in the freezing cold city without my airways spazzing and restricting. I felt like a new person! Although soon I would come to realize that a new identity isn't all it's cracked up to be ...

One of my favorite things to do after work was attend dance cardio classes and I couldn't wait to test out my improved lungs. But after a month on Trikafta, I felt extremely disconnected from my body. My limbs felt awkward and stiff I couldn't for the life of me get it together. After working out, my clothes and skin were no longer covered in crystalized salt. Even though my nickname since high school was "Salt Biscuit," I wasn't salty anymore. There was a point where I was convinced my sinus polyps were back. I knew my pre-Trikafta body so well that I quickly came to terms with the idea of another surgery. But imagine my surprise when my ear-nose-and-throat doctor told me my sinuses looked clean and clear. I was bewildered because I was certain I knew what my body was telling me. I was convinced I had polyps. It felt like my body lied to me, and I felt betrayed and scared.

Next thing I knew, COVID-19 came to town and life slowed to a crawl. I had what felt like brand new and improved lungs, and I couldn't show them off. My brother and I were back in my parents' house a house that used to be echoing with coughs and buzzing with machines and littered with remnants of Pulmozyme® wrappers and prescription bottles. It was now a quiet house, and I didn't know how to cope. Before I started Trikafta, I had no idea just how much my body would change. I was suddenly gaining weight in places I've never gained before. Even though I look more proportional now, all the clothes I used to love putting on feel awkward on my body. I looked in the mirror and couldn't recognize this frame.

Fast forward two years, I'm still on Trikafta and I haven't needed oral antibiotics, let alone a PICC line. I live closer to my family than I did when I was frequently getting sick, but now I have more independence with this improvement in my health, and I'm still not used to it. The changes I've experienced are so much more than just a reduction in coughing.

I don't necessarily miss coughing excessively and the IVs and the smell of alcohol swabs, but I miss how in tune I was with myself.


Imagine you're driving in a car it's old but you've had it forever. It makes weird noises, it stalls out, it spurts strange and gross fluids, and takes a lot of trips to the auto-body shop. A lot. It's a bumpy ride but it's a ride you know. You know what every sound, bump, screech, and fluid mean and you know how to fix them. Now imagine that suddenly you're in a new car. There are no more strange bumps or fluids. It doesn't stall out and the noises are different and quieter. You don't know what these noises mean. The road you're driving on is newly paved and there's an abundance of choices of routes you can take. It's good. The new car works. But you don't quite know how to drive it like you did the other one.

It's OK to miss the old car. It's OK to miss your life pre-Trikafta and pre-miraculous change. I wish I knew before that it was OK to feel that way. I wish I knew that my life would be unrecognizable and that even though the changes were mostly positive and wonderful, they were so intense that the unfamiliarity caused panic and anxiety. Most of all, although I couldn't have truly prepared for these changes, I wish I had known it was about so much more than coughing.

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Topics
CFTR Modulators | Emotional Wellness
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