Columns

Cystic fibrosis (CF) is different for everyone. I have two rare CF mutations, and my disease has never followed the “typical” course. But one thing I believe is true for all of us living with this disease is that we know our bodies better than anyone else. For the…

Even though my husband, Chris, and I have only been together a few years, he’s caught on to the steep learning curve of navigating life with cystic fibrosis (CF) and a double-lung transplant. Everything changed when Chris came on the scene. I no longer had to carry the…

For seven years, my Medicare prescription drug plan, Aetna’s SilverScript, has been one of the few things in my life I haven’t had to think much about. It simply worked. This fall, I learned that it will no longer be available in my state in 2027. Just like that, a…

Note: This column describes the author’s own experiences with various alternative therapies. Not everyone will have the same response. Consult your doctor before starting or stopping a therapy. I’ve used alternative therapies my whole life to fill the gaps in Western medicine. Through trial and error and changes in my…

After living with cystic fibrosis for nearly four decades, I’ve learned valuable lessons about support people. Chronic illness is not for the faint of heart, and not everyone can hang out in the uncertainty with me. I’m so grateful for those who can, and who have shown me what…

Longtime readers may recall that my first job after college was as a researcher in a cystic fibrosis (CF) lab at Cincinnati Children’s Hospital Medical Center. It was a transformative and deeply informative period of my life. I learned in the lab how frustrating science can be. For…

If I had a dollar for every awful word spoken to me over the years, I’d be a millionaire. “Are you anorexic? Or do you just throw up after you eat?” “Eww! You have alien fingers.” “Time to take your crazy pills at the nurse’s office, Lara!” These are…

For most of my life, food was medicine. Living with cystic fibrosis (CF) and pancreatic insufficiency meant my body didn’t absorb fat the way it should. Because of that, I also didn’t properly absorb fat-soluble vitamins. From childhood, I was taught to eat more: bigger portions,…

As a therapist who lives with cystic fibrosis (CF) and a double-lung transplant, I’m not immune to mental health struggles, and in my experience, it’s nearly impossible to talk about chronic illness without talking about mental health. For many years, I felt alone and separated from my peers, but…

At 55, and six years past a double-lung transplant, I sometimes catch myself marveling at how I’ve gotten this far with cystic fibrosis (CF). When I was a kid, nobody handed my family a map that stretched this far. Yet here I am, still learning how to live beyond…