Finding an exercise routine I could do with CF made all the difference

I was extremely active growing up. I was the point guard on my elementary school’s girls’ basketball team and the catcher on the softball team. I had no problems playing entire games and participating in multiple practices each week. My cystic fibrosis (CF) physician always encouraged my mom to keep me active for airway clearance and overall health.

But as I grew older, became a mother, and worked full time as a nurse, I struggled to maintain a consistent exercise routine. It always blew my mind that laundry, cleaning, and being on my feet all day didn’t count as workouts. I certainly felt tired after completing those activities! Still, I’ve always tried to incorporate “real” exercise into my weekly routine.

I should give myself a little grace, though. As those of us with CF know, we have some great days and others that feel like hell. My childhood CF physician would often explain that my heart and lungs had to work extra hard to properly oxygenate my body. He’d say it was like I was jogging on a treadmill, even while asleep. That analogy has always stuck with me.

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Finding a program that works for me

Over the years, I have joined gyms and dabbled in all types of classes — aerobics, spinning, kickboxing, you name it. But after a few months, I tend to fall off the wagon, and then I get into a rut of not exercising at all (though I’m still doing the laundry, cleaning, grocery shopping, and cooking, which never end).

When my lung function dropped from 45% to 26% seemingly overnight, I went to my care center for a lung transplant assessment. I stopped working and made my CF my full-time job. It was then that I realized a sustainable exercise routine was paramount. I didn’t have the breath or energy to do much, but walking slowly for a few minutes on the treadmill and adding one additional minute every few days slowly improved my endurance.

During that time, I also stumbled upon Taylor Lewis, PhD, and his Pulmonary Performance Institute (PPI) on Facebook. He was creating exercises specifically for people with lung disease. I reached out and completed his initial evaluation, and then started a personalized program.

The exercises are simple, using bodyweight movements to help balance out strength deficits. They also helped me to expand my rib cage and the skeletal structures supporting my lungs. This program was something I could stick to easily, even while using supplemental oxygen.

My team kept emphasizing how important my leg strength would be during my recovery from transplant, as I wouldn’t be able to use my arms to help me stand up for a while. I agreed to participate in a research study through my care center to measure my quadricep muscle condition before and after the surgery.

During the 21-month wait for new lungs, I lost a lot of weight and experienced muscle atrophy. But I still kept up with the PPI program.

A few days after my transplant surgery in 2020, I distinctly remember having an ultrasound done on my quads for the research study. The therapist commented that my muscles were in perfect condition. He asked what kind of exercise I’d been doing and said that, whatever it was, it was highly effective.

Since then, Taylor and his PPI program have become integrated with the CF community. The PPI website shares testimonials from both adults living with CF and CF physicians, and I recently saw his classes being offered through the Cystic Fibrosis Research Institute.

I continue to do these exercises with my new lungs. They involve simple movements that I can easily incorporate into my day. It’s the only exercise routine I’ve been able to stick to long-term. While I still dabble in other activities, I always have these effective go-to moves.

I know we’re all tired due to CF, but I highly recommend working with your doctor to find a form of exercise that suits your body and daily routine. It’s vital for lung function, muscle and bone strength, cardiovascular performance, blood sugar and blood pressure control, flexibility, balance, and weight gain.

What is your go-to exercise routine with CF? I’d love to read about it in the comments below.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.