30 Days of PH: I Slowly Began to Accept My New Normal

Photo courtesy of Terra Carter

Day 6 of 30

This is Terra Carter’s (@Realslimmshadey) story:

My twin sister was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) more than 10 years ago. I was tested and showed no signs of having it. I lived a normal life, exercising, working multiple jobs, and getting tattooed.

In 2016, I started to have random syncope, or fainting, episodes. My doctor thought it was anxiety due to a car accident I was in.

In 2020, the episodes became worse after I had been working out heavily. I was sent to a cardiologist who believed a pacemaker was the solution. I asked for a referral to get a second opinion, but was refused and told that without the procedure, I would die. Fortunately, my twin had her yearly checkup and explained to her doctor what was going on. The same week, her cardiology team began working to figure out what was wrong with my heart.

On Dec. 1, 2020, I was diagnosed with IPAH. At first, I was depressed and angry trying to wrap my head around it. My dogs, Rocky and Liberty, truly kept me from feeling like my life was over. I had distanced myself from friends and never went back to the restaurant where I used to work.

Slowly, I began to find myself and accept my new normal.

A few months later, I met my boyfriend, Dalton, who accepts all that I am. From the start, I was extremely honest about the good and bad things that come with IPAH. With his love and support, I began feeling normal, going out and doing things after a long time of hiding due to the fear of another syncope episode. But my doctor assured me my medication was working, and I shouldn’t have any more episodes.

Dalton races dirt bikes so we started traveling around Ohio for the local motocross races. The dogs also love going. As soon as I start packing their bag, they know it’s camping time!

This entire year I’ve treated my IPAH like the elephant in the room, not wanting to talk about it. Sharing my story, I hope it helps others talk about their rare conditions without fear of judgment. I am beyond grateful for my doctor, her amazing team, OSU, and Dayton Children’s.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.