Trial and error
When I took my first dose of Trikafta in March 2019, I felt, as the pills slid down my throat, that my life might be changing. And change it did. In just a few days, breathing was easier, pain was minimal, and energy was plentiful. After a euphoric six weeks on the medication as part of a clinical trial, the doctor called one Thursday night.
“Do not take another dose of the medication. Your liver levels are almost 10 times what they should be,” she said, dread in her voice.
I was in tears. How could this incredible experience be so fleeting?
A few days later, Ramón was diagnosed with leukemia. My already broken heart shattered. As Ramón stayed in his hospital room getting chemo, I walked all over the hospital for a battery of liver tests. Labs upon labs. An ultrasound. An MRI.
“Think of the money I’m saving on parking,” I told Ramón — a thought that would only cross the mind of a perpetual patient.
Trikafta was approved by the FDA in late 2019, and by summer 2020, I was curious to give it another try — this time freed from the constraints of the clinical trial. At the time, my physical health declined more each day as I endured the stress of Ramón’s uncertain prognosis. Would he regain more consciousness? Was this the future?
Before I ventured too far into my Trikafta Take 2 daydreams, Ramón died. After his death, waking up to face the day was a great enough struggle, so no part of me wanted to take a potentially life-prolonging medication. Then there was the vulnerability of another painstaking loss.
Last summer I decided to go for it — to take Trikafta again. I’d worked hard to improve my mental health and knew that I could handle the outcome, whatever it may be. Though things were stop and go during the first few months, my bloodwork leveled out, enabling me to stay on the medication.
Today marks one year on Trikafta!
I still have to do respiratory therapy and take many pills, among other things. But I never thought I could have this quality of life again. This is my toast to Trikafta!
P.S. For the people in the CF community who are unable to take Trikafta, I hope your miracle is coming. I haven’t ridden off into the sunset. I’m fundraising with the same passion I always have. If you’re one of the lucky CFers (oxymoron) also benefiting from Trikafta and similar therapies, I ask that you channel your improved health into doing the same — into supporting the entire CF community. We’re in this together.