Trikafta: The First Dose
A Prayer for my Cells:
As Michelle was nearing the end of the prayer she wrote, right before she took her first dose, her computer froze. On zoom, her image froze and the audio stopped. Why would that happen right at the very moment we were there for?! We had spent half an hour together finessing her background, lighting and angle. We then spend another half hour talking about our experiences, how she felt right before her first dose, and her hopes for how this medication would change her body’s function.
Michelle
When I first heard the news that it was approved in Canada & that we had coverage I could not stop crying. Think I cried for a week straight.
It is very very hard to explain the profound overwhelm of it all.
It's happening!!!!!!!!!!
We have a second chance at life!!!!!!!!!!
Richard
Richard had a friend film his first dose on his phone. He wanted the moment to be with his wife and close friends, but he was happy to send me a copy of the recording.
I barely slept last night...listening to all the crackles in my chest wondering what it will be like to actually breathe.
I don’t think it’s a game changer like many people call it. The game is still the same, it’s still us against CF...no one has ever won the game and even with Trikafta, CF will still win every time.
We have to keep fighting for ourselves, and for everyone that Trikafta doesn’t work well or can’t take Trikafta at all!
Steve
Steve’s Trikafta arrived a day earlier than expected. We had a scheduled video call for the next day, but once it arrived, he couldn’t wait! We’d all had to wait for so long already, for federal and provincial approval, for individual approval, and then delivery delays. Progressive diseases don’t wait for approval deadlines, efficacy reports, or funding delays. Our collective sense of urgency to get started on Trikafta was exemplified in Steve’s actions. He filmed himself taking his first dose for this project.
“Orkambi and Symdeko couldn’t get me off the oxygen, but I'm hoping Trikafta can.
Nothing but positive thoughts but the negative experiences I have had with the others have started to creep in my mind...As I have high expectations with this med..
I swear I felt my body feeling the med only after a few mins... and still feeling like things are happening ... hard to describe really”
Amy
“Do you have like a thing that you said you will do once you feel better?
Example. I live in Gibsons on the most intense hill ever. And my claim is that I will walk it
But then they told me I’m accepted. I’m like oh shit.
Do I actually have to do it hahaha
Omg it’s like a 21 % grade hill. I’m not sure exactly what that means. But it’s insane
This feels like your car will flip backwards while you drive up
Anyway. It’s my goal”
Meta
“I feel like I’ve been waiting my whole life for this. I have so much hope and cautious optimism. I really hope this works for me.
I took Orkambi for a few months several years ago and had to stop because of side effects. I really, really hope I can tolerate Trikafta.
I had this weird side effect that hadn’t been documented at the time.. it was kind of a mental health thing. But I was really physically tense and agitated too. I don’t know what to call it exactly. But it was awful. I couldn’t really function. I hope Trikafta is better than that for me.”