Post Trikafta Flare-Ups
Last updated: March 2023
Receiving the gift of Trikafta didn’t feel like a cure, it felt more along the lines of a promise. It felt like it promised me a life back that I never imagined I could have again. It promised to keep me at or above my baseline until something better comes along. It promised to make me feel like a human being, instead of a human being patient. It did exactly this, for a whole year and counting. Unfortunately, promises can be broken.
My CF cough
The one cautionary tale I was told repeatedly is that Trikafta is tricky because it can hide things. I can feel on top of the world while a CF bug creeps up on me and wacks me from behind. This wasn’t my experience for the whole first year of being on it. It did not erase the anxiety I had of waiting for my sputum test results or completing a pulmonary function test in the spirometry lab. It did in fact show results. Results I was proud of and results that I wanted to post on social media and show all my friends.
Trikafta even got rid of my constant coughing which was one of the biggest life changes. I always feel like my cough bothered people based on the stares I would get, the comments asking if I was sick and how people would stop their conversations to gawk at a girl who is far too young to be a heavy smoker. I couldn’t help the cough coming out, I tried to hold it in, but that would only result in more coughing with choking noises. The escape from this symptom was one of my biggest reliefs.
Trikafta highs and lows
One morning I woke up and couldn’t clear my throat. I sipped my water from my bedside table, patted my chest and out it came. I was shocked that this could happen. I thought I was immune from this kind of stuff now, but I was wrong.
The return of my cough was followed by 3 weeks of exhaustion, chest and back pain, and wheezing going up and down stairs. Once again, I felt like I had CF. I do have CF, but Trikafta gave me a glimpse of what it would be like to not, and I almost believed that I didn’t anymore.
Whatever infection I had was cleared by 2 weeks of antibiotics, but I still didn’t feel like my post-Trikafta self. 4 weeks later I was struck with all the same symptoms rolling back in. Once again, I am using up all my sick days, troubling my boyfriend to take care of me and complaining to my parents about how unfair life feels. I have CF, that never actually went away. I needed a reality check and this was it. My lung function dropped a whopping 20% within days.
It is difficult for me to cope with the extreme highs and lows of my CF journey the past few years. Getting older with more disease progression, yet simultaneously getting a life saving drug. It is all confusing to organize my emotions.
What helps me
What has helped me cope with this rollercoaster is gaining a better understanding of CF. I know I feel like an expert when it comes to my own illness, but I never take the opportunity to relearn what I think I know, and understand how treatment and medications work scientifically.
Being real with myself and managing my expectations is important. It doesn’t have to take away from the joy and hope that getting something like Trikafta brings. It just helps me realize that nothing in medicine and illness can be 100% promised, there are no guarantees.
There are victories, frustration, defeat and celebrations. There is a spectrum of results in all things CF, it is not one way or the other, healthy or unhealthy. It’s easier to explain to others in the healthy versus unhealthy way, but I think a lot of that explanation was rubbing off on myself and how I believed Trikafta was affecting my CF’s function.
Learning more has also given me a clearer outlook on myself, my illness and what to do to cope when I have another day on Trikafta where I feel like I “have CF”.
Have you participated in clinical or market research before?