While growing up, I honestly didn’t sweat doctor’s appointments very much. (Perhaps sweat is not the right word since I have CF – LOL!)
Why? I guess it’s because I did not understand the significance of each pulmonary function test, blood test, X-ray, and sputum culture. In my teens and early twenties, I was generally around 90 to 110 percentile in my FEV1 (Forced Expiratory Volume in the first second) which is what doctors use to decide whether a patient is doing ok or needs a boost with IV antibiotics. I took those numbers for granted. It was like being the undefeated number one team in the country. No need to worry about the next opponent because I’d never been tested before. Now, that I am living life on Trikafta things are changing for the good.
That has changed over the last 20 years or so. I’ve had large dips in lung function, have been on IV antibiotics, and haven’t reached 90 percentile in nearly three decades. My FEV1 has generally been between 80 to 82 percent, has dropped as low as 65, and has been as high as 87. I work hard during my workouts doing chest, biceps, triceps, legs, abs, shoulders, back, jump rope, jumping jacks, forearms, and running one to four miles every single day. Most of the time during those runs I’m coughing three to four times per mile, and at least a few times while lifting weights.
Since starting Trikafta, my pulmonary function numbers have suddenly increased for the first time in years. I am running two, three and four miles while barely coughing, and I seemingly have an extra burst of energy with less need for rest during my workouts. I have gained a few extra pounds, feel overall stronger, and for the first time in a long time, I can take deep breaths.
Monday, January 13, I go see my doctor who will measure where my numbers are and whether I hit 90 or not.
I’m ok with the results because I know I’m getting stronger. This past Saturday, I blew a 91percent FEV1 on my home Spiro PD monitor. My numbers at my doctor’s appointments are usually a few points less, something I blame on white-coat syndrome because I get very nervous when I go to the doctor. Still, I know I can finally hit 90 again.
This time I won’t take it for granted.
Live your dreams and love your life!
Andy
Read more about my experience on the drug Trikafta here!