The Diagnosis

I remember feeling so relieved and confident upon arrival to the university lung clinic in October 2004. A resident interviewed me, left the room then returned with an elderly doctor. At that first appointment, they said that I had a Restrictive Lung Disease and it was now going to be a challenge to discover which one of 200 I had cooking in my lungs. I was so happy to put a name to it. To check my oxygen saturation and confirm their diagnosis, the resident and I ran up 2 flights of stairs then checked the O2 meter. 72%. Confirmed. (A marker of this disease group is fast de-saturation during exertion.)

“No more exercise until we figure this out,” he said. No more of our beloved walks along the ocean in the morning. They ordered Pulmonary Function Tests and a CT Scan. PFT’s are a series of breathing tests to measure specific functions of the lungs. I vomited afterwards. It is like asking a person who has a broken leg to jump up and down on it for two hours. The CT Scan revealed “ground glass.” Clearly something was wrong. For those lung people reading this blog, my DLCO was 7.7. They transplant at 7.

After a disappointing bronchoscope in November, it was decided that I needed a lung biopsy. On January 12, 2005, they deflated one lung then remove a small pie wedge from each lobe. That was fun. I won’t go into the draining tube coming from my lung and out near the shoulder blade, nor the removal of said tube with no pain meds on board, nor the tear in my bladder due to catheter problems, nor the month recovery. It was all worth it to have a correct diagnosis.

I waited to hear the diagnosis. Left messages. Waited. Days passed. It was the 22nd when I finally heard from the resident who “forgot” to tell me the results. HYPERSENSITIVITY PNEUMONITIS. He said that it was not even in the top 10 of their suspected Restrictive Lung Diseases. An environmental trigger of organic dust, fungus or mold causes it. He said that we would try to find out where I am being exposed and, after removal from the trigger and with the help of Prednisone, my lungs would heal. He also said that my lungs were better than expected and that they were going to see if they would heal on their own without drugs. We were so hopeful. He was so wrong.

Next: The suspected exposure