31 Days of CF: Working Out a Way to Not Waste Away

Photo courtesy of Julia Mahoney

Day 12 of 31

This is Julia Mahoney’s story:

Bombs. That’s what CF means to me. I was in sheer denial, wasting away, sitting at 18% lung function. I needed new lungs and it didn’t resonate with me. 

Back in 2016, I had a wake-up call and nearly bled out of my lungs in an intensive care unit. As soon as I woke up in a groggy state on a ventilator, I knew I had to make a few changes if I wanted to see my 25th birthday.

I had already undergone a liver transplant at eight years old and didn’t want to succumb to another one. I was on Orkambi, a brand new CFTR drug, and my lung function rose a little bit, but 34% just wasn’t enough. 

Reluctant but determined, I attended the gym daily with jeers and taunts about my decaying frame, aggressively coughing and gasping for air in between my sets. Slowly but surely… I made progress. I went from 80 pounds to 90. I was slamming back protein shakes and shaking up the classic CF diet to more nutrient-dense foods, although still high in calories.

I eventually underwent a metamorphosis and no longer was forced to undergo a lifesaving transplant. I was at 100 pounds and held a lung function of 44%. I persisted daily — attending the gym while striving to earn a bachelor’s degree. 

Flash forward five years later and Trikafta arrived. It was a life-changing event.

With Trikafta alone, I rose to 56% lung function and 120 pounds. I was able to move out for the first time ever and attend grad school. I never stopped working out though.

After being on Trikafta for a solid year and working out for four and a half years, I contracted Covid-19. And while it was not a fun time, I did really well with it. I even fought off my first cold without IV meds after Covid.

I just had my lung function re-tested and even with all of these major hurdles, I am now at 62% lung function, and you better believe I’m moving towards the 70s, one weight at a time.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.