I Forgot My Treatments and I Am OK
Some things always go together, like cystic fibrosis (CF) and airway clearance. It’s no surprise that airway clearance is an important part of CF maintenance. For decades, most people with CF completed frequent and cumbersome forms of airway clearance to shake loose the sticky, thick mucus.
Trikafta and airway clearance
After Trikafta was released, the relationship between CF and airway clearance changed a bit. With healthier lungs, thinner mucus, and less coughing, some people were able to cut down their treatments, decreasing the number of medications or time they spend doing the airway clearance with guidance from their CF care team. Believe it or not, some people completely stopped treatments altogether. How crazy is that?! (The impact of Trikafta still blows my mind two years later!)
However, many people with CF continue to need the same airway clearance routine as before to keep their lungs healthy. Even though I had a remarkable improvement on Trikafta, I seem to be one of those people. On a normal day, I still complete two rounds of airway clearance with four inhaled medications, followed by an inhaler. Although I have tried some time off inhaled antibiotics, I find I feel the best when I take them. So, I “keep on, keepin’ on” to do what’s best for my lungs.
How does it feel not to do treatments?
I will admit that it’s intriguing to see others who have benefited so much from Trikafta that the burden of airway clearance is lessened. How do they feel? What do they do with the extra two hours a day? Is it weird not to do airway clearance after doing it for so long?
I try not to let myself get caught up in the comparison game because I have made improvements as well. Overall, treatments are still an important part of my life, but I don’t need them first thing in the morning to function as I once did.
Beautiful CF amnesia
In fact the other day, I walked around my house feeling as if I forgot something but I couldn't figure out what exactly. Hours later after I was coughing more and clearing my throat, I realized I had completely forgotten to do my morning airway clearance. I didn’t skip it on purpose or vow to do it later, I just plain old forgot! I think that's the first time it’s ever slipped my mind like that.
On one hand, it’s a beautiful form of amnesia. It means that I’m doing better. That my lungs are much more stable to the point that I don’t wake up and count the minutes for relief. I can get up, take care of my children, and function on a more normal level. My CF can wait a few minutes to be attended to first thing in the morning. With Trikafta, some people miraculously regained their time and energy, but I am at peace with the fact that I can be still for a minute and be OK.
Have you seen a change in your airway clearance regiment? Tell us about how you have coped with the changes below!
Have you had a flare on Trikafta?
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