Sarah Sizemore - phaware® interview 354

Dec 8, 2020

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 wearing a backpack, having a central line, knowing that the medicine in the backpack was very important and to protect it. I think I was on Flolan for about five or six years. Then I switched to inhaled therapy. I went to oral pills. Then after that, I went to subcutaneous [therapy] in my sophomore year of high school. I'm back to IV Remodulin now, two years ago.

The school staff, the administrators, they had meetings. Every year with school, we have meetings with the school board. Then with me, I think it was maybe open and closed. With the backpack kids could see. I just told them it was, my body needs this medicine and that was it because I was so young. Mainly closed in middle school. Then high school is when I opened up and told my whole class and everyone, all the students and made them aware about PH.

Junior, senior year is when I started being in and out of the hospital. My senior years is when things have taken a toll and my PH has gotten worse. They found out from me being in the hospital and also me telling them. They were at first shocked because of course, I've been with them since seventh grade. They didn't even notice that I had a chronic illness at the least, or PH. They were welcoming. They were so loving. I wish I would have told them sooner, but they were awesome. Then they surprised me. The whole school got shirts made with #SizemoreStrong on it and surprised me one day with the whole school wearing them after they found out about my illness. I definitely cried. It was truly incredible to see that they were trying to be aware of it. My parents also cried. Pretty much everyone cried. Then I was given an award my graduation day called Tried By Fire, which is where a student, they excel dealing with a struggle or a chronic illness. They gifted that to me. The whole school was crying. Pretty much everyone was crying. I couldn't make it to that ceremony, because I was really sick, but my parents and family were there. It was truly remarkable to see.

I am not in college right now. I'm a little nervous about that due to my health right now. I think right now, I'm trying to get my health more stable, trying to get the PH more stable. Any daily activities right now takes a toll on my body. I don't want to over-stress it, but I would love to go to college and study, but right now, I think my PH is too aggressive right now to do that. I think my passion right now is I work at my high school as the assistant director for the theater program. I started working for our theater program sophomore year. I was backstage stage manager. I worked all through my high school career. Then after I graduated, I wanted to officially work there as an assistant director and stage manager for the theater program. I grew up with all those kids when I started sophomore year. I hope go into theater in college. That's probably my one passion that I love.

Getting diagnosed is stressful, but lean on the PH community. Ask questions. Try to get to know everyone. The PH community, for me, has been the greatest blessing with having PH due to the support and the huge family that I've gained by PH. Then just searching through therapies. I know it's definitely the hardest diagnosis that you could have, but having the PH community and just the will to fight and not to let PH win. Lean on others. Try to find therapies. Ask questions. Take a step back, try to focus and just fight. It's big, but I will never let PH win. Try to stay positive. I know that's hard, but I think, with me, what I've been trying to do is spread positivity. Fighting PH while spreading positivity or trying to make someone else's day better by trying to be positive every day. I think those are the biggest ones.

My name is Sarah Sizemore and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials