I have been fighting all my life so that someday I would be ready for a drug like Trikafta that could improve my lung function. And here I am at age 46 with the ability to finally do so. I often hear people say if they won the lottery, they would quit their job and just relax.
I know a lot of people consider Trikafta to be the lottery but I’m not quitting my “job.” I’m working harder at it. My job is to take care of myself by doing my treatments, my meds and exercising. If I stop doing that, I forget about the guy who worked so hard for 46 years to get to this point — and I don’t wanna forget about him. I can’t forget about him. That identity is so valuable to me.
My doctor said it would benefit me to do two treatments a day instead of three and so I have done that, but am using that time efficiently. Now I am running more than ever before. I was running between 13 to 15 miles a week before Trikafta. Now I’m running 20 miles a week. I’m also working out harder, and running faster and farther. And I’m doing all this with barely a cough. Trikafta is doing its part. It’s my turn to do mine.
I’m hearing about a lot of people who want to do less with regards to treatments, meds and exercise because of the magic of Trikafta. It bothers me. There are so many people out there who would trade with us in a second to have a drug like this. So now that we have all these magical powers, we don’t want to take advantage of them.
All of a sudden we could be Superman and we’re content with being Clark Kent? We have to continue to fight. We owe it to the people we’ve lost before us to CF. We owe it to the people whose genotypes, age, previous transplants, or country of residency will not allow them to take this drug. Most of all, though, we owe it to ourselves.
Our fight didn’t end thanks to Trikafta. It’s only just beginning.
Live your dreams and love your life.
Andy