How Trikafta Changed My Life

Trikafta is "pure magic" in a blister pack. "The golden ticket, the sunshine pill, the miracle". The commentary I heard from consumers of this drug was astronomical in comparison to the feedback I had heard on Pulmozyme or Ventolin. The first medication that works for my gene combination, treating the cause not the symptoms. I did not fully understand what Trikafta would entail, and frankly I didn’t care to understand it. I just knew I wanted it more than I’ve ever wanted anything before.

A feeling of hope

I had seen the success other patients had with it and it was the thing I had been waiting for since I was old enough to comprehend what CF was. I knew that the process would be lengthy to get access to a $300k drug. So as soon as Health Canada approved its usage I got to work. Calling insurance companies, benefit programs, medical coverage applications, the works.

I’m not an angry person, but it was difficult to keep my cool. I felt like no one understood the urgency of the situation at hand. I nagged staff and volunteers on the phone for months. Regrettably, because I knew they were just doing their job and couldn’t speed up the process, even if they wanted to. Yet, every person I spoke to gave me a feeling of hope. I felt so lucky to even be in the process. I often cried but I didn’t know if it was because I was happy or sad or overwhelmed.

I practiced in the mirror every night what facial expression I would use when I received Trikafta. I wrote drafts of what I would type in my social media posts to announce it. I thought about what feelings would flow through my body.

On December 1st, 2021, I got a phone call from the delivery man who was outside my condo complex. I practically flew down the stairs and greeted him with the largest smile. He asked for my name and I nearly forgot it. I stomped up the stairs and showed my dad and boyfriend who were waiting anxiously. I didn’t feel any of the things I thought I would. Pure relief is the sole emotion I had. The weight of 21 years was lifted off my shoulders that day.

How I told my family

I knew I would be receiving Trikafta that day because I organized the delivery. My mom was in Punta Cana so I thought it would be great to surprise her. I FaceTimed her and told her that the advent calendar she got me for Christmas looked strange. She told me to go get it and show her what I meant. I popped the Trikafta box in the camera, which she was very familiar with after seeing dozens of photos online. She burst into tears and screamed in happiness. My dad was behind the camera and I took a huge spoon of peanut butter and downed the first 2 pills. It was a wonderful moment to share with my parents.

The dilemma I had was whether or not to tell my younger sister. She has CF as well but her Trikafta coverage process was delayed. We had done everything together CF care wise. We had been on the same medications, done our treatments together, gone to appointments together. This was the first moment that I would be leaving her behind.

But I couldn’t wait for her, health comes first and that was a hard decision to make. I did call her and let her know. She said she was happy for me but I knew this came with an element of heartbreak. The worst part was I knew how she felt because we had witnessed so many CF patients getting Trikafta in online communities which was bittersweet. I told myself not to be selfish but this was the one time that I wanted to be selfish. I just wanted it so bad and I felt sorry that I couldn’t give it to her too.

Immediate effects

The rumors were true. The effects Trikafta had on my body were almost instant. I had to ask myself repeatedly if I was experiencing a placebo effect, but my at-home pulmonary function test doesn’t lie. My lungs felt huge, like a balloon that kept expanding. My constant cough stopped and my strained voice was clearer. The crackling and pain in my chest with every breath vanished. The huffing and puffing that came when I jogged up the stairs to my apartment with the Trikafta box, was the very last time I would struggle with stairs. I got dressed without taking a break to catch my breath. I smelled fries for the first time.

I had so many firsts all over again, it felt almost childlike. So instead of worrying that I will only ever be a child, I could plan for the future and exist without fear. Trikafta was the closest to hope for a cure I’ve ever gotten.