I resisted being listed for a lung transplant; but now, almost six years later I’m thankful — especially to my donor — for my new life.
Breastfeeding when you have CF is more complicated than it is for people who don’t have CF. Here’s what I’ve learned about it with my kids.
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.
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.
Today, the Cystic Fibrosis Foundation announced that it has awarded up to $400,000 to Life Edit Therapeutics Inc. to explore the application of their unique gene editing technology in CF.
I’ve learned that paying too much attention to the idealized lives of people on social media can give me a skewed vision of my own.