31 Days of CF: The Unexpected Side of Trikafta
Day 25 of 31
This is Luisa Palazola’s story:
Three months before I started Trikafta, I went to Colombia with my FEV1 at 62%. Toward the end of my trip, I coughed up blood on the side of the street. At that moment, I felt overwhelming pride to be able to pursue my dreams, even if it meant something as scary as hemoptysis in a foreign country. These are the risks I took to live and, to an extent, I expected them.
I started Trikafta through the study trials, and no one knew what to expect. My lung function shot up to 84%, which was unbelievable, and that number alone shattered my concept of self.
Becoming healthy and having stability is not something I could have ever imagined. I haven’t had a hospital admission in more than two years. Sure, I had a relentless hope that something would change, but to fathom what life would look like with stable health was incomprehensible to someone who had never had that.
What do you do when you’ve lived your whole life diagnosed with a terminal illness and then are suddenly diagnosed with new health? For me, it was not a whimsical or magical moment — bop, I’m healthy!
It was and still is a development of trust in my body. It is an acknowledgment of unconscious expectations that are knotted in my brain. It’s a long-term deconstruction of 25 years of health trauma. And there is grieving, lots of grieving: grieving the child and adolescent who was always sick, and grieving my old life and how I had to live to exist.
On the other side of those hard emotions and realizations, there is awe and appreciation for the person who tried. It wasn’t until Trikafta that I started to fully appreciate what a CF diagnosis meant, and how hard it is to live life with broken lungs. I now understand from an almost observer’s point of view. For me to say I pursued wild dreams with a chronic and terminal illness is empowering, and provides perspective for the mundane problems before me, like: what do I do with my life, now?
Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.