Columns

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…

I used to measure my worth the way so many of us are brought up to do: by what I did and by how productive I was. Productivity is a conversation starter in most social circles. How much you’ve accomplished or how busy you are is celebrated like a badge…

I love my job and find the work that I do fulfilling. It’s cool to be a pharmacist. That said, a major issue in healthcare right now is caregiver burnout. Providing round-the-clock care to someone who is sick can be exhausting. Hospitals have all kinds of initiatives designed to…

There is a version of me that exists only on paper: a list of diagnoses, a string of acronyms — CF, DIOS, CFRD, CKD3, DVT — that would mean nothing to a stranger and everything to the people who share them. At 55, I negotiate with…

Before my double-lung transplant nine years ago, I frequently struggled with daily living tasks, simple ones that most people have no problem doing on their own. I was in my early 20s, on my own, and living with cystic fibrosis, but in a strange middle ground. I wasn’t sick…

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…