How the Pandemic Delayed My PAH Diagnosis

‘PAH might have my body, but I refuse for it to have my mind.’

Mark Snyder lives in Waxhaw, North Carolina, with his wife Julie. In his free time, he enjoys riding his motorcycle and is part of the Christian Motorcyclists Association. He is looking forward to fishing more often now that he’s retired. This is his story.

By Mark Snyder

In July 2019, I inhaled part of a taco that sent me to the hospital. The doctors discovered that I had pneumonia. I was in the hospital for eight days, and it took a month to recover. Once I was home, I found that I was short of breath when I exerted myself.

In December 2019, I was in the hospital with pneumonia again. I stayed in the hospital for a week and my shortness of breath became more troublesome. In January, I made an appointment with my pulmonologist. After an echocardiogram, she diagnosed me with pulmonary arterial hypertension (PAH). I did not have a clue what PAH was.

My pulmonologist referred me to a specialist, but I couldn’t get an appointment until March 2020. When I finally met with the doctor, he didn’t feel like I had PAH. He set me up for a cardiopulmonary exercise test. COVID-19 hit, and the test was canceled. I didn’t know if it would ever happen.

I became more and more short of breath with no sight of relief. My wife was concerned for me and started calling the PH team. She made a lot of phone calls. We could not get in to see anyone, so she asked about going elsewhere for testing. That got the wheels turning. I was scheduled for a right heart catheterization (RHC) in May.

The RHC determined that I had PAH, and I was put on medication. The feeling of the unknown was terrible. But it was almost a relief to know why I felt the way I did.

Since my diagnosis, I have not had any in-person appointments with my doctor, just video calls. I don’t really feel that I can be treated correctly this way. They can look at the reports and labs, but this does not replace the ability to see and talk to the doctor. I never went through an exercise test, and it took months to get on oxygen. Meeting in person makes all the difference in the world.

I have found lots of answers on PHAssociation.org. I was able to read about other PHers who had the same questions I did and shared their knowledge. My PAH diagnosis caused me to lose my job, my house and insurance. I moved from Arizona to North Carolina to be closer to two of my adult daughters. They are a great support to me and my wife.

PAH was not something I asked for. It took away my material things and my ability to do most things. Climbing stairs is like climbing a mountain, but PAH will not beat me! I decided to live my life with all the strength I have. If I allow PAH to control my mind, then it will control my life. PAH might have my body, but I refuse for it to have my mind. I will live the rest of my life enjoying the days I have left.