Two Years of Trikafta

This March marks two years since I started taking Trikafta. I remember getting the package in the mail. It was just a couple of weeks after the pandemic had started. My husband and I both hoped that this new medication would, at the very least, stabilize my dropping lung function. Little did we know what it would do for me.

We sat together on our bed and just stared at the box for a minute. I really wanted to sit with this moment and feel everything without rushing through the motions. This moment was something we had hoped for and prayed for since we had first heard of Trikafta. Now, it was in our hands.

Running out of options

At this point, my health had been deteriorating rapidly the previous few years. My lungs had cultured a new fungus that my body could not cope with despite my team’s best efforts. The amazing CF doctors at my clinic were throwing everything at it, and nothing was really working. To be honest, we were running out of options.

Before I was placed on Trikafta, I had been approved for Symdeko. If you aren’t familiar with either of these medications they are called modulators. They help correct the genetic mutation in the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR). That’s the fancy word for why CF patients have such thick mucous secretions. Our CFTR doesn't work because of genetic mutations.

When I started Symdeko in 2019, I was able to “take a breather” so to speak. It was the first time in over three years that I wasn’t hospitalized every three months. I remember talking to a close friend and telling her that I had forgotten what it was like to have to have a hospital bag ready to go at a moment’s notice.

As my family and I kept hearing stories of varying success with Trikafta, I remember thinking, “I will be happy if it stabilizes me. That’s all I want. I just want to be alive.” I remember crying with joy when one of my CF friends, Mary, got her Trikafta in the mail during the clinical trial. She saw immediate, positive results and I was overjoyed for her! I hoped that I would have a great success story with Trikafta, but we had to wait another year or so before we would find out.

First Trikafta dose

That warm morning in March is etched into my memory. While my husband and I sat on the bed reading instructions for how to take Trikafta, it felt surreal. I wanted to manage my expectations, but I remember my stomach was flipping. The excitement, anticipation, and hope were overwhelming. Soon after that, my friend, Mary, called me on FaceTime. We had agreed that my first dose of Trikafta would be taken together, and we did just that – and celebrated with our glass of milk in hand while both of our husbands cheered us on. After we hung up, I cried more tears of hope and happiness as my husband hugged me.

It was a few days before I experienced what CFers called “the purge”. For the first time in my life, my lungs and sinuses had thinner mucous that I could cough up. I remember being both amazed and grossed out by what came out of my body. And I remember whispering to my lungs one morning, “You’re doing it! Keep it up!”

Changes with Trikafta

As time passed, we quickly realized that not only would Trikafta stabilize me, but it would also increase my lung function and appetite. I was eating all the time and I was putting on much needed weight. Not only that, but I was no longer out of breath when I ate or when I walked from our bedroom to the living room.

Seeing my life change before my eyes with Trikafta was a humbling and emotional experience. Whenever I took my two yellow morning pills, I would often think of friends who weren’t able to take it or had passed away before this became available. I remember being overwhelmed with gratitude and thinking how privileged I am to not have access to this medication, but to be able to take it without severe complications or side effects.

Two years later

It has been two years since my husband I sat on our bed in that one bedroom apartment in a new city. As I drink my morning glass of milk so I can take my Trikafta, I look around and life looks a lot different than it did two years ago. We have moved to be closer to my parents. I’m able to be a freelance creator and I go on walks with my husband each evening at sunset. My nieces and nephew come over to hang out and play and most of the time I can keep up with them (kids have so much energy!). And I don't have a hospital bag packed ready to go at a moment's notice.

Trikafta has changed so many people’s lives and I am just one example, but there are still so many people waiting for this second chance at life. We cannot leave anyone behind in the CF community – every single one of us deserves access to life saving medication. Thankfully, there is a huge community behind each CF patient. There are advocates, researchers, doctors, nurses, scientists, and investors who want the same thing as us – for us to be healthy and live longer. The work isn’t done.