Time Traveling With Trikafta
Much like the entire cystic fibrosis community, I was eagerly awaiting my arrival of the recently approved CFTR modulator: Trikafta.1 Following the published research,2,3 community hype and amazing progress stories shared on social media, I became slightly obsessed with getting Trikafta into my hands. Desperately, I even went as far as calling my specialty pharmacy multiple times a day in hopes of speeding up the process. I wouldn’t be surprised if my picture is taped on their wall somewhere with a label that says, “Restraining order needed”.
After weeks of waiting (and calling), it finally arrived at my doorstep just as I was leaving to be admitted to the hospital to start IV antibiotics (again). Perfect timing!
My first dose of Trikafta
When my nurse delivered the first two orange pills in the paper cup swimming with a handful of other pills, my heart skipped a beat within my chest. My life could possibly be changed, little by little, moving forward with each dose but I attempted to act casual. My husband and two-year-old son were visiting at the time. We were enjoying lunch as I swallowed the first two orange pills.
Within hours of taking the first dose, I started to experience what I heard others refer to as the “purge”. Copious amounts of mucus was spewing out of my body from my sinuses and lungs. Even with the most pathetic and ill-attempted coughs, the infection would rise up like a reverse waterslide while I quickly filled specimen cup after specimen cup with my prize. I didn’t need to cough multiple times or use large force to attempt to dislodge the sputum up and out.
The infection slipped and slid. It wanted to escape my lungs. It wanted out furiously.
For the first time in a long time, it wasn’t an endless or unsuccessful battle to clear my lungs.
Experiencing progress with Trikafta
After two days of "purging", a strange and forgotten experience happened: I relearned what it felt like to take a deep breath. I’m not sure if this is exactly how the average healthy person feels when taking a deep breath in and allowing their lungs to expand.
The truth is, I still have 29 years of serious lung damage to work through. However, I could feel the air moving to places it had previously been obstructed from. My lower lobes, almost forgotten to be dead, felt movement and oxygen. Shocking! Any new air movement is a celebration when you have lungs overpowered by CF. And so, I celebrated by taking big deep breaths in and out, over and over again, until I practically passed out.
Starting Trikafta while admitted in congruence with IV antibiotics, steroids, intense airway clearance, and ultimately, rest, may have biased my experience. I felt better in those few days than I have in an entire year of frequent home IV antibiotics and various treatment plans. It felt as if someone handed me a piece of remembered time that CF had already left its stain on, and then asked me to relive it but as a healthier version of myself.
The decline I experienced this past year from disease progression could possibly be erased. The improvement was so simple and unusual compared to scraping for every pound, percentage point, and ounce of energy. I was time-traveling with the help of two tiny orange pills. I was more than ready for the adventure.
Have you started the new CFTR modulator Trikafta? What has your experience been? Please share below with the Cystic-Fibrosis.com community!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?