Updated: Jan 1, 2022
My plan was to be in Atlanta for MLK day just for the weekend of Jan. 15, 2016. Yet, my trip lasted an additional 5 months. After leaving the hospital in Tampa, I felt like my life was saved and I could resume back to my normal activities. But God has a way of altering your plans, so it can go according to his plan.
I sat in the living room of a friend's house preparing to go out for a night on the town. Yet, I could barely get dressed due to the excessive dry cough that I had. It was so bad that if I tried to say one word out of my mouth I would start coughing. I found myself constantly swallowing my spit to lubricate my throat and drinking bottles of water to clear my secretions. But nothing at all was working. I was severely short of breath and coughing so hard that I felt as if I would break every rib in my body. The distress that I was in, was so unbearable that the hospital was the only option.
Walking in the hospital again was so painful, I didn't know if I was going to go through what I had just endured a couple months ago in Brandon Hospital. The last place I wanted to be was there. After being there for a week with more extensive tests and highly trained physicians, I finally received a diagnosis. I had a Lung Biopsy done for the first time. The doctor walked in and said, “This is only going to get worse.” There was scarring (fibrosis) and inflammation all throughout my lungs, with the cause UNKNOWN. I truly lost all hope hearing those words, I was devastated. He told me the medications were just going to keep me stable but not cure the disease. “How could this happen to me at such a young healthy age”, I asked myself. I was only 33 years old. Well this doctor didn’t give me much hope and made me feel like I wouldn’t live past his office visit.
But Dr.Alex Truong, at Emory University Midtown an amazing Pulmonologist that completed a residency in pulmonary disease associated with autoimmune conditions. Walks in my room so casually and poised and sits next to me in the chair, and says “hun, you have Antisynthetase Syndrome”. Talk about looking at him like a “deer in headlights”, was an understatement. I literally froze for what felt like hours. He continued to talk and all I heard was Charlie Brown’s teacher saying “Wah wa wa wa wa”.
After processing and trying to pronounce anti-syn-the-tase (Antisynthetase Syndrome), I sat there trying to remember if I had ever learned this in medical school at Emory. I sat there and wondered if this was one of those days that I tuned out the lecture. I remember the lectures on the Autoimmune Diseases but I truly missed this diamond in the rough.
As gentle and with an amazing bedside manner, Dr. Truong explained to me the complexity, rarity, and challenges of the diagnosis. He informed me that I would be on immunosuppressive drugs to suppress the antibodies that were attacking my lungs. I would also leave the hospital needing supplemental oxygen. He gave me hope that I could still live a good life, and this diagnosis was not a death sentence. The condition is rare, affecting 1/100 people, making it a difficult diagnosis to make and understand by many health care providers. And unfortunately, not many doctors are even familiar with this condition and oftentimes misdiagnose it. The feelings I had at this moment was unexplainable. Thoughts of if I could travel again, would I ever breathe normally, how long could I go on living this way plagued my mind. I had so many questions, and finding the peace and hope in the “reality of now”, was the most difficult challenge at that moment.