“I can’t even remember the name of that new drug Jo used,” my cousin told me, “but it did help improve the time she had left.”
Jo was one of my cousins, and we weren’t close. That side of the family was the larger-than-life, tall, “drinkin’ Irish” side of the family—and I say that with all affection.
Between our two families, 11 kids, four adults, and at least one cat and dog squeezed into their small house for Card Night. For me, it was both exhilarating and terrifying. Liquor—and loud everything—flowed, and ashtrays filled up, were emptied, and filled up again.
No one in my immediate family smoked (at least not openly), and though back then no good hostess would forget to put out plenty of ashtrays for her smoking guests, my mother never really approved.
Smoking was a character fault that launched one onto a slippery slope to trouble. And in my family, if you got into trouble, it was your fault. Period. So I grew up thinking people got what they deserved.
But Jo didn’t deserve IPF any more than my non-smoking friend, who was one of the most selfless and dedicated inner-city teachers I’ve ever met.
When my friend finally told her class of students—the kids everyone else had given up on—that she didn’t have much time left due to IPF, one boy offered to kill someone to get her a fresh set of lungs. He loved her so much that she didn’t doubt he’d do it, too.
She struggled with the decision to try for a transplant vs. trying to live the time IPF allowed her to the best of her ability. In the end, she decided not to spend her time chasing a transplant that she felt likely would never happen.
So having experienced that with my friend, my heart soared when my cousin’s sister talked about the new treatment Jo had tried.
Those of us who know someone (or several someones) who’ve received an IPF diagnosis know the power of a teeny weeny—barely a smidge, really—bit of hope.
In my mind, everyone I’ve met through IPF patient and care partner programs wears a superhero cape. And the scientists laboring in sterile labs every day, trying to understand how to improve IPF lives deserve unlimited funds for their research—and angel wings.
Their work is paying off… in 2014, the FDA approved two new therapies—Ofev (nintendanib) and Esbriet (pirfenidone)—that help prevent further scarring of the lung tissue. Stem cell treatments generated from separating out stem cells from a patient’s blood or bone marrow may be helping, too. Searching for IPF on the US government’s clinical trials website brings up 234 results (though searching for breast cancer brings us 7,545).
According to a recent report, 56 companies are “currently developing treatment strategies” for IPF.
Those are comparatively small numbers, but we’ll take ‘em because every step focused on finding answers for people with IPF is a hopeful one. And hope helps us all improve the time we have left.
If you want to learn more about IPF, or find opportunities for support, here are some not-for-profit organizations to check out:
