Well, it’s been 1 year on the wonder drug and I have to say it’s been quite a ride.
My journey on Kalydeco started pretty rough. The insurance battle was rather minimal but once I was approved all hell broke loose in my body. First, was the insane cough, every night, all day. Then was the acne all over my face. Next came my runny nose and some feminine issues (I’ve posted about it previously). It was as if my body was going through some crazy detox and I couldn’t make it stop.
After months that felt like years of trying to get everything together and numerous specialist visits, I slowly began to feel a bit closer to myself. I still get lots of sinus headaches, and I still cough. But my cough is more like clearing my throat than hacking up my lungs.
I sometimes forget to take my pill, mostly when I’m out living and didn’t put one in my purse, but I try to be good about it, and I can definitely tell a difference if I’ve missed one. I cough more and the headaches are excruciatingly worse.
While I understand that Kalydeco is not the perfect solution, I have come leaps and bounds from where I once was. Kalydeco has made me feel relatively normal. I no longer have to walk away from friends, out of parties, from dinner tables or out of work because I’m coughing.
For the people who are more into the pft function, I already had great percentages and was averaging 96-98%. So there hasn’t been much of a difference there. But sometimes the numbers don’t reflect the true story, and for me Kalydeco has been more than a change in my numbers, it’s been a change in my world.