On November 7th, 2012, at 72-years-old, my dad started having trouble breathing.
It was unusual for him, so we quickly rushed him to the emergency room. A nurse checked his oxygen level and saw that it was in the low 70’s. They administered a few tests and x-rays, and he was diagnosed with Pulmonary Fibrosis.
I’d never heard of PF until then, so I immediately started researching the disease to see how we could help him. It didn’t take long for me to realize just how serious this disease was. After two nights in the hospital, my dad was able to go home, but he was required to wear oxygen 24/7. His oxygen prescription started off at just two LPM (liters per minute) but soon rose to four LPM. That’s when I realized how quickly his journey was going from bad to worse. Prednisone seemed to help my dad some. But he had to be on 40 mg a day just to see a small difference.
My dad had a cough for a few years before he was diagnosed. We just kept thinking it was new carpet he had installed. But other than the cough, he didn’t have any other signs. We were shocked that it was PF. And even more shocked to find out there was no cure.
We went back to the doctor and he was put on liquid oxygen. By the time I had gotten a grip on all of the research, he was already in a worse state than I had realized. I just couldn’t believe that he not only had a disease with no known cure, but he was fading away right before my eyes.
My dad started struggling to even walk to the car. By the middle of November, he couldn’t even walk to his mailbox.. And he was a very active person: he walked, played golf, went shopping, etc. My dad loved to be outside. And a few weeks before he passed away, I took him for an hour drive. He didn’t feel like going, but he was so glad he did. And he had my aunt pick me up a birthday card. That made him feel good to sign it. I will always treasure that!
To patients or the loved ones of patients with Pulmonary Fibrosis this would be my advice: I would recommend going to every doctors visit, ask ANY question you can think of (there are no silly questions), research as much as possible, write down anything you don’t understand, then ask someone what it means, and more than anything, validate your loved ones sickness. They need to not only know they are loved, but that you realize how serious their sickness is.