After a childhood spent running, I had largely given it up by the time I became an adult. But five years ago, it became my outlet. CF and COVID-19 temporarily sidelined me, but as long as there is air in my lungs, I won’t ever give up.
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I never had the luxury of time to reflect on the hardships that I experienced fighting cystic fibrosis because I was too focused on that particular day’s struggle. Still, there are two experiences that have stuck with me even though they were more than 10 years ago.
I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
After gaining weight on IV steroids to treat my cystic fibrosis, my self-image became distorted, and I developed anorexia. I realize that I am not my illnesses, but they are a part of my life that I can’t hide anymore.
Having CF has always involved doing things nobody else around us is doing because, well, we have to — and COVID-19 won’t be any different. As a post-transplant CF patient who happens to be a practicing pharmacist, I am writing about the tools we now have in a world of limited universal restrictions and precautions.
I thought my exercise capacity on continuous oxygen would decrease. Thanks to the support from others and high-intensity interval training, my exercise capacity actually increased.
NextBreath is a free, biannual virtual event that provides support and connection for people with CF and their family members who are living with advanced disease or navigating through the stages of the transplant process.
My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.
Growing up, I struggled with wanting to feel “normal” because I was bullied and judged by my peers for my cystic fibrosis. But then I found genuine friendship in college and learned what it means to feel truly supported.