Tuesday, June 13, 2023 marked the day of my open lung biopsy. I went to the follow up appointment to meet with my new doctor at VCU to go over the results. They weren’t able to determine what I had, but they were able to rule out sarcoidosis. That was the positive news, but I was still in the unknown. I was referred to the interstitial lung disease (ILD) clinic and was to see a leading ILD pulmonologist. It was this man who would change my life forever.
I had my first appointment with my new ILD doctor on July 11, 2023. After seeing my X-ray he said there “seem[ed] to be a lot of airway centered scarring and inflammation, most suggestive of a potential exposure driving [my] symptoms.” In August, the pulmonologist presented my case to the ILD conference, which consisted of a panel of doctors of varying disciplines. After discussing my case, my “presentation was thought to be most consistent with unclassified ILD with a prominent inflammatory component.”
I will always remember the date August 15, 2023. It was the day of my follow-up appointment when the doctor shared the outcome of the ILD conference and also discussed the plan for treatment. I was eager to hear the action items that would bring me permanent relief.
The plan was broken down into A., B., C.’s: A. Begin another immunosuppressant at a higher dose; B. Begin an antibody therapy medication; and C. Lung transplant.
This was the first time I had heard “lung transplant” as a course of treatment. The doctor said that the evaluation process for a lung transplant is quite lengthy and involves a lot of tests. He referred me to UVA for the evaluation to get the ball rolling so I’d be ready when/if the time came for a transplant. When the doctor stepped out of the room to gather some resources I teared up immediately and called Evan. I left the appointment feeling stunned. “Of course it won’t get to that,” I thought to myself. But the thought of a lung transplant was incomprehensible. I got to the parking deck, sat in my car and cried. It was a brief release because I had to get to work…
“Holy Trinity”