Trikafta and Life Without My CF Cough
Before Trikafta, it was difficult to imagine life without… a cough.
That cough. The cough we all know too well.
I believe everyone who lives with a chronic illness hope and pray that one day they will be healthy. I guess, I never truly took the time to think about what that could really look like.
"Sick girl" free
Most of my sick girl free fantasies went something like having the luxury of travelling around the world neb-less. Zero hospital admissions, not another blood test or, never needing to chase up another damn prescription sounded great! You know what never crossed my mind? What "cough free" would feel like.
I never thought becoming a healthier, fitter version of myself would present challenges. That was until I laid my hands on those two peachy pills that literally turned CF on its head.
The cost of being "cough free"
At first, living without this essential part of myself felt unsettling. My breathing needed to adapt. Learning to navigate a normal style of breathing was hard. Less air gulping from all the shallow breaths and more deeper regulated breaths felt unnatural. I always avoided deep breathing as it always triggered a rattling rumble or an aggressive spew.
After starting Trikafta and losing my cough on day 4, my body and brain was miffed. Instinctively I kept trying to cough out of habit. All I could manage was a very, very poor attempt at a dry hack. It was not one that any CFer would be proud of. Gone were those juicy, deep rumbles.
What life without that cough really looks like
For the first time in my lifetime, breathing is wheeze free, phlegm free, pain free and cough free. Mornings no longer require relentless hacking as I peel my eyes open, reaching for my closest pot to spew green, rancid gunk into. Walking the dog doesn’t mean multiple stops to clear that wheezy tickle in my chest. I am not caught off guard mid-conversation with an unstoppable coughing frenzy. I don’t live in fear of a pelvic floor accident when I am taken by surprise at the gym because uncontrollable coughing fits just don’t happen anymore.
Less is more
Losing the thick, green phlegmy frog in my throat has literally changed my life more than I have ever envisioned. The physical changes look like improved posture, an end to my back pain, even my voice sounds different. My confidence has grown leaps and bounds, not only do I not feel like that sick girl but I don’t sound like her.
Less coughs. Less phlegm. Less inflammation. Less infections. Less sleepless nights. Less hospital admissions. Less time spent on physio.
More lung capacity. More sleep. More breathing. More air. More time. More life.
Shedding my sick girl skin
These things may sound like small, insignificant changes but they are by far the most notable change in my CF journey to date. Learning to live without a chronic cough has been an overwhelming yet utterly wonderful exploration of who I am beneath the grumbles.
Yes, Trikafta has come with its own challenges along the way. I’ve had to weigh up the good, the bad and the memory loss. But without this drug, I would have never been able to shed my sick girl skin to discover this cough-free version of myself.
If you or your loved one are taking or have taken Trikafta, has the experience been positive or negative?
How much of a financial burden has dental work been to you?