I’m Aware That I’m Rare: Sarah Sizemore (354)

The phaware® interview

PAH patient Sarah Sizemore discusses being diagnosed with pulmonary hypertension at a young age in Denver, her family’s decision to move from altitude and how positivity helps her face this disease.

My name is Sarah Sizemore. I live in South Carolina. I have idiopathic pulmonary arterial hypertension. I was diagnosed at four years old in Denver, and then we had to move to South Carolina for sea level. My dad owned his business in Colorado and my mom’s an ER charge nurse. I started having seizures. Dr. Dunbar Ivy is the one who diagnosed me. He said at the time just being diagnosed, I couldn’t handle the altitude. I was diagnosed in spring and that next year we moved. We sold our house. My dad quit his job. Then, my mom relocated to a hospital here in South Carolina. We moved to South Carolina, because my mom loves the beach. We did an in-between in North Carolina, a couple of hours, there’s mountains so we decided it was the perfect spot.

I have a sister and brother. I’m the baby. My brother’s 27 and my sister’s 23. I think their thought process was do whatever to keep me healthy or to try to get me stable. [My family] just decided that whatever needs to be done will be done. We’ve been here ever since I was four, so we’ve set roots. Then my siblings’, also, same thought process was, whatever we need to do for me, we’ll do it. Even though my mom was an ER nurse, she had no affiliation with pulmonary hypertension. She didn’t know what it was or how rare it was. She did not have knowledge until I was diagnosed. I was having blackout spells and then I was diagnosed from a seizure. I think when I was diagnosed, she had a meeting with Denver to try to see what it was. Over the year when we moved, doing any research she could to find out. Now she’s like another perfection of PH. It’s really nice having a caregiver who also has medical training just in case anything happens at home.

Early years, I remember mainly being on IV [therapy]. Flolan is what they started me on. I always remember…