We all have secrets. Big or small, good or bad, most of us have things we do not share, sometimes even with our closest friends and family.
My secret is that I have a chronic, irreversible lung disease that most people have probably never heard of. Idiopathic pulmonary fibrosis, or IPF, affects about 100,000 people in the U.S. every year, and I happen to be one of them.
IPF causes the progressive fibrosis—or scarring—of the lungs, and eventually results in the lungs shutting down entirely. IPF is a rare illness, meaning it affects less than 200,000 people every year, but its impact is profound; IPF is more rapidly lethal than many more common cancers, with a life expectancy of only 3-5 years. And because the symptoms of IPF are similar to other respiratory diseases, it is also frequently misdiagnosed as chronic obstructive pulmonary disease or emphysema.
Healthy Lung Month
October is Healthy Lung Month, and this year, I’m choosing to share my story about living with IPF.
The first time I’d ever heard of the disease was because of my mother. She had IPF, and she died from it 20 years ago. The second time was when I was diagnosed. Everyone knows someone, or knows someone who knows someone, with cancer. That’s not the case with IPF. Ever since my diagnosis in 2012, I haven’t met a single other person with it. Most afflicted don’t even know that they have IPF.
I found out something was wrong during a trip to Lake Tahoe, CA. While hiking with my family, I quickly noticed I couldn’t breathe. I stumbled back to the parking lot. After running a panel of x-rays and a test called a high-resolution computed tomography (HRCT) scan, my pulmonologist told me that I had IPF. If not for that hiking trip, it could have been another several months, maybe even a year, until I found out.
How my life has changed
This is an all-too-common occurrence for people with the disease. They brush off a persistent cough as just a cough, when it could be something far worse.
Prior to my diagnosis, I lived an active lifestyle. I worked for 40 years manufacturing outdoor products, and loved bicycling, hiking, backpacking and fly fishing. The change in my life since learning I have IPF has been huge.
People look at you differently when they know you have a prognosis. In their eyes, you’ve changed. You aren’t just Dan, you’re Dan with IPF, a disease with a finite timeline and no cure. That’s the hardest part. For someone with IPF, there isn’t much hope, apart from receiving a lung transplant.
How do you talk about a serious illness? My choice has been not to. Why burden those around me with something they have no control over? I’ve told those that need to know—my wife, doctors and recently, my daughter, but other than that, I’ve kept my diagnosis to myself.
Hope in the form of new medications
Until recently, sharing an IPF diagnosis was hopeless because there was little that could be done—no approved medicines, and certainly no cure. But in October 2014, the FDA approved medications for the treatment of IPF.
So when I told my daughter, I was able to say I’m on medicine that has been shown in some cases to slow the progression of my disease. Telling someone you love that you’re dying is unimaginably difficult, and being able to give him or her hope for more time with you matters.
Five years, just 43,764 hours—for some people IPF, this is the most time they’ll have left. What becomes most important is what you want with to do with it. Me, personally, I want to spend it with those I love. This Healthy Lung Month, newfound hope comes in the form of time, thanks to new medicines that may slow IPF’s progression and recently formed support networks that connect people to close the distance that secrets create.