Six Minor Ways Trikafta Has Significantly Changed My Life
Trikafta has changed the lives of many individuals and families in the CF community since it’s release. A lot of people with CF are finally feeling better and living different versions of the lives they once lived. Monumental changes are fantastic--but sometimes there’s joy in the details of our lives as well. In the long run, do these minute changes really matter? No, probably not. However, the minor changes to our day-to-day lives add to the experience of taking such a uniquely altering medication and are worth mentioning.
Random coughing reactions
Coughing was once the soundtrack of my days. With so much variation, there was the wet and productive cough, the dry coarse hack, and the scary will-I-ever-inhale-again before I suffocate coughing attacks. Truthfully, my close friends and family never reacted to my cough, especially my toddler son. My perpetual hack was just “normal” to him. However, now that I cough less on Trikafta, he’ll randomly ask me, “You OK, Mommy?” And, it always makes me laugh that coughing is alarming to him now.
Pretty painted nails
I never used to paint my nails because I thought nail polish accentuated my oddly shaped, or clubbed fingernails. Honestly, my fingernails weren’t that badly clubbed, but I wasn’t about to waste my time (or energy) highlighting something that didn’t make me feel good about myself.
Recently, I started giving myself some at home manicures because Trikafta has helped my nails look more normal. Does this matter? Nah, however, my nails look pretty.
Reading for pleasure
Before Trikafta, I was in a pretty heavy decline of health that took a toll on my mental health. I didn’t have the energy or the mental space to do many things outside myself other than exist in “survival mode” as a young mom and wife. That meant, I rarely watched new TV shows, movies, or read books. Something about starting a new storyline, which I would then have to carry around in my mind, felt so overwhelming that I couldn't do it. It’s a weird coping mechanism I have developed to protect myself from the anxiety of living with CF.
Now, I have more mental space to fill with content that I have been able to start reading again--something I have always loved. This year alone, I have read 22 new books so far!
Dry pants again
This one’s a bit more important in the grand scheme of things: urinary incontinence. After having a baby and coughing 24/7 for years, my pelvic floor was a wreck. Embarrassingly, I peed my pants more than I care to admit when coughing, laughing, or sneezing.
Since I started taking Trikafta and cough less, I think my pelvic floor has had time to strengthen and repair itself, meaning I hardly ever pee when I am not supposed to now. I am really proud of this advancement in my bladder control!
More fruits and veggies
Extra calories are the hallmark diet of anyone living with CF since gaining weight can be so difficult. Therefore, my focus was always on filling my plate up with the largest portions of the most calorically dense foods. I love fruits and vegetables, but they didn’t help me gain weight like I needed.
Now that I am able to maintain the Trikafta weight gain, I am feasting on healthy fruits and veggies without an ounce of guilt. It’s been so freeing to eat an apple and not feel forced to add obligatory peanut butter as a side.
For most of my adolescent and adult life, I have had relatively nice and clear skin. We always used to joke I got the nice skin because I dealt with so many other difficulties with CF--that was until I started Trikafta.
Hormonal acne has been an annoying and painfully self-conscious side effect of Trikafta that has caught me off guard. I have spent the last few months trying to find products that help with no success. However, if the price of healthier lungs is beauty, sign me up any day!
In what minor way has starting a new medication made a big impact? Have you or your loved one with CF noticed any unanticipated side effects of Trikafta? Share your stories below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?