Columns

After my late daughter, Jasmine, turned 17, something new began to grow alongside the medical routines that had shaped her life with cystic fibrosis (CF). Every morning still started with the bronchial drainage machine loosening the mucus in her lungs. Nebulizer treatments followed, and pancreatic enzymes remained…

If you live with cystic fibrosis (CF), chances are you already know more about fall risks than most people twice your age. I certainly do, even six years after I had a double-lung transplant. When people think of CF, they usually focus only on the lungs. Most of this…

Note: This column describes the author’s experiences with tacrolimus and prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve been dealing with a different and unexpected symptom these past eight months, one that’s challenged my pain threshold on a…

Over the last two months, cystic fibrosis (CF) has summoned challenges that caught me by surprise. First, my body betrayed me in a way I haven’t experienced in more than 20 years: My small intestine became obstructed. Weeks later, my betrayer was not physical, but logistical: An airline lost…

I’ve been in pain so long that I can’t remember a time when I didn’t feel pain in one part of my body or another. Through surgeries, procedures, medication side effects, and the injuries of everyday life, pain has been a constant companion for me and continues to affect my…

By the time my late daughter, Jasmine, turned 17, our days had settled into a kind of uneasy peace. The routines that helped us manage her cystic fibrosis (CF) had become second nature. Every morning began with the bronchial drainage machine thumping away in the living room as…

I took part in physical therapy (PT) on a weekly basis to build my strength during the lead-up to my double-lung transplant nine years ago. PT was mandatory to complete the prerequisite requirements to be listed for a transplant, but I learned so much about myself in ways that…

Life at home never really went back to normal after Jasmine’s last hospital stay. She was 16 and wise beyond her years in ways that only kids who’ve spent too much time in hospitals can be. Every day was a balancing act for me, between being her parent and being…

I celebrated nine whole years with my new lungs on Aug. 18. My husband took me to my favorite lake, where we logged some hours at the beach, jumped into the cold water, and ate at our favorite local spots. The day gave me some much-needed time to reflect on…

I recently had the privilege of attending a virtual experience called Spit It Out. That’s a storytelling and public speaking training series created with a Cystic Fibrosis Foundation (CFF) Impact Grant. It’s led by Katherine Russell. And this Impact Grant truly impacted me. Russell, who has cystic fibrosis (CF)…