Dyane introduces herself and describes her experience living with pulmonary fibrosis.
Hi, I am Dyane. Eight years ago I was diagnosed with pulmonary fibrosis. Most people, when they look up pulmonary fibrosis on the Internet see that it’s usually fatal in two to five years. I am here to share my story with you and how I’ve fought for these eight years and to tell you that there is no expiration date stamped on your behind.
My mother died of pulmonary fibrosis in 1996. She was one of the people that did die. She was diagnosed and died five years later almost to the date. At that time, nobody knew much about it and after my mother passed away I didn’t think I’d ever hear about it again.
When I moved back to Phoenix we lived near the North Mountain Preserve and my daughter and I would go hiking all the time and I was short of breath, which I blamed on being out of shape and having smoked for a lot of years. I had quit smoking and I kept expecting that the shortness of breath would go away, but it didn’t.
And when we were moving, we had just moved into an apartment; we were building a new home and I laid down and I couldn’t breathe. So the next day I went to the hospital and they put me in because my oxygen saturation levels were off and they didn’t know what was wrong with me.
Three days later I passed out on the way to ICU on the way to be put on a ventilator. I was on a ventilator for eight days and was given a 50:50 chance of living. They did a thoracotomy on me to send a slice of my lung out. They really didn’t know what was wrong with me except for the fact that I was having some sort of an autoimmune response that was attacking my lungs.
Three and a half weeks later I got out of the hospital. I was told that I had idiopathic interstitial pneumonitis, which is basically a form of pulmonary fibrosis. I kept asking the doctor, “Is this the same pulmonary fibrosis that killed my mother?” And he said, “No, or you’d be dead by now.”
For three years I was watched over by my pulmonologist. I had CT scans, I had pulmonary function tests and they all stayed the same. I was very stable, and after three years he said, “You are fine. Go live your life. I don’t need to see you anymore.”
Two years later I noticed a decline in my breathing and my husband who was ill at the time, I went out and bought an oximeter to measure the oxygen because he was sick, and just to find out where I was I stuck it on my finger as I walked around Safeway and my oxygen saturation was at 75%. The doctors don’t want you going below 90.
I immediately went home, put on the nose holes, and I have been connected to a 50-feet leech ever since. I went to my new pulmonologist. She is my pulmo-dudette as opposed to the pulmo dude, and had a CT scan and a pulmonary function test and my lung function had declined down from 55% to 38%. Technically, I am eligible for a lung transplant, but I weigh too much thanks to the heavy doses of prednisone, which make you eat everything in sight.
So here I am, fluffy. I am on eight liters of oxygen or more when I am walking, which scares a lot of people that don’t understand pulmonary fibrosis and I still work 40-hours a week as an accountant.