“Whatever It Takes” is the song from Imagine Dragons that I’ve been listening to most of the morning. Those three words have also been my approach to fighting this disease ( cystic fibrosis) for the last 46 plus years. This was going to be one of the biggest days of my life so far.
Today was my first doctor’s appointment since starting the life-changing cystic fibrosis drug, Trikafta.
I walked into the appointment optimistic after I was able to run 3.8 miles in 34 minutes without a single cough this morning. I did two therapies and also lifted weights for 30 minutes.
I got to the doctor’s office at 10:30 AM. My weight was up as expected. It’s normally around 175. Today it was 179. Good ole Trikafta. My blood pressure was down a little bit which was great because it is usually high predominately because I get nervous at the doctor’s office. It went from around 140/90 to 132/80. The rest of my stats were pretty good as I prepared myself for my pulmonary function test.
My goal was to hit 88% because I had scored 91% at home and my numbers at home are usually 3% higher than they are at the doctor’s office. I did the first PFT and it was around 88% or 3.50 Liters. I was happy but I also knew that usually the second go around I do a lot better. So I blew with everything I had and the numbers ballooned from 3.50 to 3.63 and 93%. That is the best I’ve had since my college days 25 years ago. I could not believe it.
At my last appointment in October, I was at 80% or 3.13 Liters and my baseline was 83% or 3.30 Liters. I just jumped half a liter and 13% in three months.
That is crazy.
I have never had that kind of increase in lung function without IV antibiotics and numbers that weren’t severely low to begin with.
The doctor said my chest sounded clear and that he is happy with how things are going. All I can say is that I am so grateful for Trikafta.
It has changed my life and I’m so glad it’s changing other people’s lives too. This makes me more adamant that we have to give people all over the world 100% access to this drug and we need to find drugs that can help 100% of the CF population including children under twelve.
I’m still shocked as I sit here in my car. This disease was supposed to take my life before I could go to college, get married or have children.
I am a CF warrior just ike 70,000 other people around the world. We just can’t give up, we need to do whatever it takes.
Live your dreams and love your life.
Andy