Pulmonary Fibrosis is an incurable disease that causes progressive scarring and stiffening of the lungs. Over time, it becomes harder and harder to breathe as the lungs’ ability to transfer oxygen into the blood stream declines.
Today is Pulmonary Fibrosis Awareness Day. It’s also the one-year anniversary of my diagnosis. Statistically, I have a 50/50 chance of living four years past my diagnosis. And after 12 months of living with and fighting this disease, I’m beginning to understand that statistic more clearly.
A year ago, I got winded walking up steps or an incline — without using oxygen. Now I get winded getting up from a chair or brushing my teeth with oxygen. Last fall, I made it to most of the high school football games to watch my daughter perform with the marching band. This year, I will probably attend one… and that will require careful planning and two portable liquid oxygen tanks. Both of my kids have colds right now and I live in fear of catching it. No hugs. No kisses. And every time they sneeze or cough, I fight the urge to recoil It wouldn’t take much to put me back in the hospital.
But there is hope. In the past two months, two of my PF friends on Facebook have received new lungs and a second chance at life. I hope that one day, I will receive that chance as well. So, in the spirit of building awareness of this dastardly disease, I’ve compiled a few interesting facts:
200,000 Americans who have pulmonary fibrosis
48,000 New diagnoses each year
40,000 Annual deaths (the same as breast cancer)
1 Currently available treatment – lung transplant
79 Number of organ transplants performed daily
18 Daily deaths among people waiting for a transplant
8 Potential number of lives saved and/or changed by a single organ donor
1 Number of people added to the transplant waiting list every 10 minutes.
Pulmonary fibrosis isn’t pretty. But you can help. Firstly, don’t be so quick to judge when you see someone using oxygen. I can’t tell you the number of scornful looks I’ve gotten from people who assume I have COPD brought on by a lifetime of smoking — usually followed by angry whispers that I got what I deserved. My disease is idiopathic, which means even after lung biopsy and dozens of blood tests, we still don’t know what caused it. And pulmonary fibrosis is very different from COPD!
Secondly, you can become an organ donor. It takes five minutes and you can sign-up online or at your local driver license bureau.
And finally, you can support ongoing research into the causes, treatments, and one day a cure, by donating to the Pulmonary Fibrosis Foundation.
PF Warrior Bill Vick curates a wonderfully informative newsletter on Scoop.it Check it out!