Who Am i?

WHO AM I?

I am a father, philosopher and person with a fatal illness. That creates some challenges, embarrassments and , oh yeah, ultimately death. In this blog I intend to write about that and, of course, incorporate some related topics - some distantly related, no doubt.

I have a disease called Idiopathic Pulmonary Fibrosis – a name that does not roll off the tongue particularly easily. It's an always fatal lung disease that gets progressively worse. Here is a definition based on what I have culled from the internet:

“Pulmonary fibrosis refers to scarring of the lung tissue (fibrosis of the lungs). The most common type of pulmonary fibrosis is called idiopathic pulmonary fibrosis; its cause is not understood. Treatment options for pulmonary fibrosis are limited as the disease is progressive (worsening over time). The prognosis (outlook) is poor for pulmonary fibrosis. The survival (life expectancy) for most patients is less than 5 years.

“With time, shortness of breath (dyspnea) worsens. Dyspnea initially occurs only with activity and is often attributed to aging. Over time, the dyspnea occurs with little or no activity. Eventually, the shortness of breath becomes disabling, limiting all activity and even occurring while sitting still.”

Because the diagnosis was given about a year and a half ago, I have moved along in several areas. First, while there wasn't denial, there was a kind of ignore it attitude. Anger didn't follow, it was part of the initial stage and it was aimed at the doctor who diagnosed me. He was a young emergency room doctor in a local hospital, who spoke to me about five minutes, ordered a chest x-ray and then had a male nurse hand me a piece of paper. The nurse said, "I am so sorry" and then gave me the death sentence on a standard print out. I am still angry about that part.

I have moved on now to accepting my situation. There was no magic involved in that - just "bummer, now deal with it." The two people closest to me have been very supportive, helpful and caring. I am very lucky in that regard.

Note: I am not a doctor or an expert on Idiopathic Pulmonary Fibrosis. I am just a guy who has that disease.