Misdiagnosis of Lung Disease

I have learned so much talking with other people with lung diseases. I have learned so much about the more rare lung diseases like Idiopathic Pulmonary Fibrosis (IPF) and other Interstitial Lung Diseases (ILD). What is common in these conversations is the misdiagnosis of these rare lung diseases. This can be deadly as people with IPF have a live expectancy of less than 3 years after contracting the disease. Some may never be diagnosed properly and die without knowing the cause.

Since the most common lung diseases are asthma and emphysema that is what the family doctors are accustomed to seeing. The average doctor will never see one of the rare lung diseases during their entire career.

I was misdiagnosed as having exercise-induced asthma for five months and, if I had not taken charge, would be dead because of it.

My family doctor at the local clinic decided with little thought that I had exercise induced asthma after learning my symptoms and reading my chest x-ray. My symptoms were not being able to inhale, being short of breath and coughing on exertion. He did mention that I had very small lungs in the x-ray and he even had a pulmonologist read them.

He prescribed an inhaler to be used just before exercise. There was no improvement. I went back to see him. He said to use the inhaler twice a day. Nothing. I returned again two weeks later. He said to use the inhaler three times a day. No improvement. Added another inhaler along with the first inhaler. Nothing. In fact, I was actually getting worse. Three months went by.

FIRST CLUE: People with fibrosis or ILD have lungs that get smaller as the scars in the lungs form scabs making them stiff.

SECOND CLUE: People with and ILD have difficulty inhaling. People with COPD or one of the more common lung diseases have difficulty exhaling.

THIRD CLUE:  People with an ILD have no relief or improvement using inhalers.

The doctor missed all the clues.

Finally, I called my endocrinologist who was a parent at the school where I got sick. He wrote the letter for me to be seen at the chest clinic two months later and the rest is history. I do need to mention once again that when I finally saw the wonderful doctors at the clinic, my first DLCO in the Pulmonary Function Test was 7.7. They transplant when it falls to 7. I also was functioning with no supplemental oxygen and was extremely ill though still working full time. I am so surprised that I survived all.

Had I continued on much longer, I would not be here now.