In the summer of 2015, I had started to feel early symptoms of what would become a diagnosis of pulmonary arterial hypertension (PAH). My symptoms included shortness of breath, fatigue, heavy breaths, and becoming extremely pale at times. These are common symptoms of many diseases, which led me to believe there was nothing to worry about.
However, further down the road, my symptoms became more sustained. I was tired of feeling this way and, though reluctant to go to the doctor, I knew it was time. The first of many cardiologist visits and multiple tests came to the same conclusion, that I had clogged arteries.
Thinking that was a conclusive diagnosis, I had thought my final step to feeling better was a coronary angioplasty. I was wrong. The only tangible outcome of this procedure was being put on high dosages of medication. The result? My symptoms worsened. Each day was a chore. I had no energy to do everyday things, which took a toll on not only myself but my family.
Despite feeling awful, my family and I went out to lunch one day, and this is where my long journey began. During this time out, I passed out in the restaurant, and the only thing I remember is being in the ambulance and the EMT saying, “I can’t get a reading on his blood pressure.” By the time I woke up in the emergency room, I was surrounded by doctors. After multiple tests, my family had been told I was not going to make it, and after 5 days in the hospital, I left with no answers.
Read more about therapies for PAH
I was at a point where I refused to go to any more doctor appointments, I stopped taking my medication, and was convinced this is how I have to live my life from here on out. It was my wife who had convinced me to finally go back to the doctor I had started with, and he referred me to another specialist.
Instead of getting another coronary angioplasty, the specialist had ordered a right-heart catheterization. This procedure in 2017 led me to my diagnosis of PAH and getting in touch with a PAH specialist. I had convinced myself that I was not going to ever get a firm diagnosis, and I did not believe that this PAH specialist knew what I had. It was not until after my first visit and the right medication to treat PAH, that I was finally convinced I got my diagnosis.
After 2 weeks of being on the right medication, I felt a piece of my life come back to me, it was nothing major yet I finally felt I was a step closer to feeling better. I had gone 2 years with medication I should not have been on, and multiple diagnoses from doctors that had no idea what PAH was. To go from thinking I have to live feeling like this, to knowing I can finally feel better was a major change to my outlook on this journey.
The prolongation of this diagnosis took a toll on me. No question in my mind that PAH is something more doctors, cardiologists, and specialists need to be more aware of and how to treat it.