Angela Michelle of San Antonio, Texas, was diagnosed with CTEPH thanks to a friend, a Facebook post and her persistence to find the right doctors. After her January 2018 diagnosis, she had pulmonary thromboendarterectomy surgery in August of that year.
I have experienced shortness of breath since 2013 when I had first had an episode of pleurisy. For years I was misdiagnosed. They attributed my shortness of breath to allergies, asthma or my weight. Then in 2016 I had a stroke and they found multiple pulmonary embolisms.
They discovered I have antiphospholipid syndrome, an autoimmune clotting disorder. I started blood thinners and was told that the clots would resolve on their own and that my shortness of breath would get better once they did.
Another year passed, but I was getting worse and just walking across the room left me short of breath with a racing heart. Finally, an old high school friend who had become a heart surgeon saw my Facebook posts discussing my health challenges. He wrote me to tell me that based on my symptoms and history of the clotting disorder he thought that I might have chronic thromboembolic pulmonary hypertension.
It was the first I had ever heard of it. I brought it up to my doctors here in San Antonio. They were skeptical because they either didn’t know much about it or they said it was rare and they thought it was unlikely.
I continued to get worse and was on oxygen 24/7 at this point. With the guidance of my friend, my persistence and finally getting into the right doctors, I had the necessary tests done to reach the diagnosis.
Six months after first hearing of CTEPH I was finally formally diagnosed. Luckily, I was a surgical candidate and here I am almost three months post op and my life has been changed. I can breathe again!
Throughout my journey I have found that there is not enough awareness about PH and CTEPH. So, I have made it a personal mission to help raise awareness so that through early detection and intervention, lives can be saved.
