Advice for Living with Pulmonary Fibrosis
Living with pulmonary fibrosis (PF) is not easy. Randy shares his tips on what he’s learned after being diagnosed with idiopathic pulmonary fibrosis (IPF) and his tips on how to live your best life with this rare lung disease.
Produced with support from Three Lakes Partners.
I couldn’t walk from the back door of my house to the garage without taking a break. That’s what pulmonary fibrosis did to me. I was diagnosed with idiopathic pulmonary fibrosis, also known as IPF, in 2008. IPF causes scarring and hardening in the lungs and makes it very difficult to breathe. With IPF, there is no known cause or cure. When I was first diagnosed with IPF, I was really lost. You don’t know which way to go, which way to turn, and I want to share with others what I've learned about living with IPF.
With pulmonary fibrosis, it’s just so hard to breathe. It just takes so much out of you. You feel like giving up, but you just can’t do it. You've got to stay active. You've got to keep moving. For me, that was the most important thing. If your doctor recommends oxygen therapy, you got to use it. It did so much for me, made me breathe easier. It makes it so you can be more active.
You can’t do this alone. The disease is overwhelming. It’s going to turn your life upside down, and you're going to need support to get through it. Whoever your support group is, they’ve got to be there to keep you positive, and for me, that was my wife, Marlene. The doctors are there to help you, but you're your best advocate. Do your own research, whether it be on the internet, there’s groups out there that can help you. The American Lung Association, they got me in contact with people that were also suffering from IPF. There’s answers out there but just keep asking. Even though many people you meet will never have heard of pulmonary fibrosis, you're not alone. There are great resources out there for patients and caregivers facing pulmonary fibrosis. Start your research today at Lung.org/pf.
Approved by Scientific and Medical Editorial Review Panel. Last reviewed February 5, 2018.