Pulmonary fibrosis and me
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 hereditary.
According to the doctors, there was a 75% chance that either my sister or I would inherit the gene from our mother. Just a 25% chance that one of us wouldn’t die from a terminal disease.
It hangs over you like a leaden cloud. It affects your decisions. Makes you crazy. My cousin died when he was seven years older than me. Did I only have that long to live? Why couldn’t I have accomplished more? Lived more? My mother was the second in our family to get it — the first to make us realize it was familial — and from the moment she was diagnosed, we realized we could die too.
They urged us not to get the DNA test. What if it was positive? How would we live then? What if they withdrew protections for pre-existing conditions and we couldn’t get healthcare? What if it made us crazy and miserable until the day we died? But we had an ace in the hole: the right to go live in Europe. If we couldn’t get healthcare here, we’d go have free healthcare there.
So we got it, together. The uninsured cost was less than the out of pocket insured cost, so I did that, hanging both of our futures on my credit card balance. We spat into a tube and waited.
A 25% chance.
“You’d better come in right away,” the genetic counselor had told me over the phone, a few weeks later. I feared the worst.
When she told us, it was better than winning the lottery. But what was better still was telling our parents. We called them immediately. My mother wept, her guilt for having passed on the condition torn away with a single sentence.
And then, when the call had ended and the moment had passed, we took a breath — really took a breath — and wondered what we would do with the rest of our lives.