How People Respond to Pulmonary Fibrosis Diagnosis - Dyane's Story

First off, they think I did it to myself. Pulmonary fibrosis is not generally caused by smoking. It’s called idiopathic pulmonary fibrosis because they don’t know exactly what causes it. There may be a familial genetic component. I seemed to have gotten every lousy genetic component between my mother and father possible. I have diabetes and I have fought off breast cancer and all that is genetically part of a predisposition, and it scares people because they don’t know why.

They see me; I am overweight. They think maybe I am on oxygen just because I am overweight and it’s not that, although being thinner would obviously help. Nurses and doctors and oxygen techs are used to seeing people with COPD, which is an obstructive disease. Pulmonary fibrosis is a restrictive disease.

I don’t have any trouble getting CO2 out of my lungs and so they think, they are always worried about how I am getting CO2 out and I don’t have a problem, but if I don’t have my eight liters I can watch my fingernails turn blue because there is not enough oxygen in my blood. Normal people have kind of a bank of oxygen in their tissues at all time, we don’t. We’re like right there, right then, right now. Without the O2 nothing happens.

And, you know, it’s kind of scary, although kids are great. Kids will look at me and I am always telling them, this helps me breathe and, you know, they see me riding in the cart with my oxygen and it’s like, you know, it’s just because my lungs have an owie and it helps me breathe and I try and tell people as much as possible, and I have always been very shy, believe it or not, but ever since, in the last year and a half I’ve joined a pulmonary fibrosis board on Yahoo groups, it’s called ‘Breast Support’, and the people on that group let me become very proactive about my disease.