Pulmonary fibrosis and me

The moment that gave me back the rest of my life

When we got the DNA test back, my sister and I, sitting in the antiseptic hospital room with the genetic counselor and our tiny disposable glasses of water, we cried. Openly, right in front of her, as if she wasn’t there.

Pulmonary fibrosis scars up your lungs. One day it’s a cough you can’t seem to shake; another, maybe six months or several years down the line, you can’t breathe. There’s no cure except to get new lungs. My grandmother died of it. My aunt died of it. My cousin died of it. When my mother dies, despite her double lung transplant and the drugs she takes to keep the new lungs inside her body, it will be because of it.

We’re rare, they tell us. On the cutting edge. Because our whole family seems to have it — there are more, even now, starting on their coughs — researchers have been able to use is to look into a root cause. Eight years into my mother’s illness, they figured out that it’s got to do with telomeres — tiny caps at the end of your chromosomes — and how easily they’re worn down over time. My mother has the telomeres of a 110 year-old.

When they found that out, they also discovered a genetic marker. They’ve all got it: every single person in my family who died of the condition had this one gene. That explains why it’s…