It has taken almost a year of waiting and tests for me, and my family, to get to this point. Last December I started having difficulties breathing when doing simple things like getting up and using the bathroom. This concerned my wife and in January I saw my primary care physician. At that time I was diagnosed with regular pneumonia. I was prescribed, and took, antibiotics & steroids for ten days. My breathing didn’t improve much from them, so I was then put back on steroids for another fifteen days.
My wife and I knew something was off with me. My mom is a practicing respiratory therapist who lives on the east coast, and we live in SE Kansas. She had previously sent a pulse oximeter since my wife and daughter occasionally have problems with asthma. I began to use it in an attempt to get an idea of what was wrong with me. It was to my surprise when I saw the O2 sat numbers fall into the 80’s. It was because of my difficulties breathing & symptoms of hypoxia that my pcp finally referred me to a pulmonologist. A long three months later, in July, we finally went to see him.
My symptoms did not improve any over this time. If anything they got worse, so my wife talked the pulmonologist into having a chest/ct done on the same day as our visit. This ct did not come back as the doctors expected. In showed problems with my esophagus, heart sac, and in my lungs it showed infiltrates, inflammation, and masses. From this ct I saw three other doctors. I also had a pulmonary & cardio stress test, pulmonary function test, and biopsy of my esophagus. My mom had been wanting a lung biopsy surgery, during all this time, as she was concerned that I may have had lung cancer. In the beginning of September, the cardio thoracic surgeon had another chest/ct done. This time the ct was done with contrast. When we finally got the results it was looking much more like I had lung cancer.
The lung biopsy my mom & wife wanted was the only test left to diagnose what was wrong with me. All the difficulties with my breathing, O2 sats, and shortness of breath had not gone away. On October 29th, I was scheduled to have a VATS assisted bronchoscopy & lung biopsy with a wedge resection. We had to wait an excruciating eleven days before we were called with the results. It was the morning, of Nov. 8th, when we got the call & learned I don’t have lung cancer. It was during this same call we were informed that my difficulties are from the disease called Non-Specific Interstitial Pneumonia, or NSIP. The next day, Nov. 9th, my wife and I celebrated our twenty year wedding anniversary. I’m now taking 40mg of prednisone daily. The pulmonologist wants to see me in Dec and wants another chest/ct done in January to track my progress.