Columns

“Cystic fibrosis is a genetic lung disease.” That’s an accurate statement, sure. But it doesn’t reflect the diversity of patient cases — the myriad mutations that cause each case of CF, and the unique medical contexts that shape those cases. And, as all CFers know, the mutations affect…

I’ve gone through life afraid of numbers. Not just math, although I’m really terrible at that. Numbers like “37”: the life expectancy of someone with CF, a number that was even lower when I was growing up. Numbers like “4”: the amount of antibiotics needed to…

I walk through a football stadium. I catch a whiff of the cotton candy and am smacked back to every procedure I’ve had, breathing in the stale cotton candy-scented anesthetic before I drift to nothingness. I am so overcome with fear that I feel like dropping to…

In the three years that I’ve spent away at college, I’ve learned oodles of life-changing lessons that can only be taught by good ole Professor Experience. Freshman year, I learned that duct tape won’t keep twinkly lights on your walls, but will allow…

I won’t lie. The first two months after my double-lung transplant were rough. I wasn’t in much pain, but my body was struggling to adjust to the cornucopia of transplant drugs, and I experienced the torment of withdrawal from the powerful painkillers I was on. After those…

You’re about to read something I wrote two years ago. I had been diagnosed with anxiety and depression not long before then. Both left me utterly crippled, and would continue to do so for several months, but what I struggled most with…

Last week I wrote about how lung transplantation isn’t the Boogeyman I once thought it was. After I had done my research, I finally considered being evaluated for a transplant. My doctors and I expected it to be at least a couple years before I’d need…

“OK, I have to go, Han. I’m sorry. I love you, OK?” “I love you, too.” My boyfriend leaned down, kissed my cheek, and walked through the hospital doors. He had just pushed my wheelchair inside the lobby, but this was only a drop-off — a…

There are two great fears in a person’s young life: “The Talk” and the Boogeyman. The Transplant Talk is an intertwining of the two for many with cystic fibrosis. My dad was deployed in Iraq when I hit puberty, so the duty of The Talk fell to my…

I was repulsed by my body. My arms were scarred and barren of muscle, thin as twigs. They hung from a bumpy, pale torso — bumpy from the ribs that protruded, the port-a-cath that sat beneath pockmarked skin, and the rubber feeding tube above my belly button.