Elizabeth Freyr was born with a congenital heart defect in 1991. Thirty years later, she learned she had pulmonary arterial hypertension. Navigating multiple medical conditions has taught her to be courageous, live in the moment and put herself first. Freyr, of Warrenton, Oregon, shares her story to uplift the PH community.
Before I was diagnosed, I didn’t realize I was experiencing pulmonary hypertension symptoms. Although I was born with a congenital heart defect and had open heart surgery when I was 6 months old, I felt relatively normal from age 10 to 30. When I began experiencing shortness of breath, I thought it was because I was wearing a mask and face shield during the COVID-19 pandemic.
It wasn’t until my doctor noticed the high blood pressure in my lungs that I realized something else was going on.
Navigating life
My doctors warned me that PH could be an invisible disease since most people look at me and see a healthy person. I think it’s difficult for others to understand what PH is, and it’s interesting to see how they react. It bothers some but others not so much.
Managing my medication and finding a happy balance is hard. I’ve struggled with gaining water weight and have tried different water pills to help manage it. A low-sodium diet has been effective, and I’ve officially reached the target weight my doctor set for me.
Despite the physical challenges that come with my condition, I believe PH has caused more mental distress than physical. Since I didn’t realize I was experiencing symptoms of PH, I’m constantly worried about other medical concerns I might not be noticing. Practicing mindfulness and listening to my body has helped mitigate some of my fears.
On bad days, I hope my friends and family know to go easy on me and validate my feelings. Sometimes, I just need a little reassurance that I am doing my best and that it’s OK not to be perfect.
New beginnings
Since 2021, I’ve been married, divorced, moved to a new city, met new friends and started new relationships. PH has taught me to live more in the moment and put myself first. It has given me the courage to go back to school to study psychology, move to the West Coast where I have always wanted to live, and not be afraid to reach out to others who might be struggling.
I’m fortunate that four years post-diagnosis, my PH is controlled and my day-to-day life looks similar to what it was before. In my free time, I enjoy going to the beach, painting, playing with my dog and spending time with my boyfriend.
To anyone who is newly diagnosed, just know that you are always stronger than you think you are. Give yourself grace and time to work through what you are feeling. Never give up and keep picking yourself back up again.
