30 Days of PH: My Experience With Genetic Pulmonary Hypertension

Photo courtesy of Sarah Beth Shingler

Day 15 of 30

This is Sarah Beth Shingler’s story:

Twelve and a half years ago, my family first heard the words “pulmonary hypertension” (PH) when my sister was diagnosed. Little did we know that seven years and three months later, we would hear those words again when our cousin was diagnosed. Eight months after that, on March 18, 2019, I was told, “You have pulmonary hypertension.”

I remember talking to my sister on the phone, and she cried telling me how sorry she was that I too needed intravenous Remodulin (treprostinil). I’d despised the medication long before my own diagnosis, but unfortunately, it was my only choice out of such few treatment options.

That evening, after my boyfriend and my mom left the hospital, I was enraged — enraged at the medical field, enraged at the pharmaceutical companies, enraged at this horrific disease and all of the lives it has affected.

Then, I cried, but they were tears of relief and hope. Even though pulmonary hypertension is genetic in our family, I knew from my sister’s and cousin’s example that I was going to be OK because the same strength and determination runs through my veins.

My nieces are everything to me, and I PHight every single day for them. I am going to be at their high school and college graduations and I will dance at their weddings. “Oh Honey I Am That Aunt.” (I have the shirt that says it.)

I’ve had to let go of some dreams because of PH. I let go of my dreams to travel, get married, and run the Boston Marathon. But I still dream of owning a Doberman pinscher, I still dream of owning a Sphynx cat, and I still dream of being able to soak in a bathtub again.

I am a certified domestic violence victim advocate, and I do case management at a licensed domestic violence and rape crisis center. My biggest fear was that I wouldn’t be able to go back to work, because I genuinely love my job. I am very blessed to work with an amazing team of people who all are uniquely talented. Having PH has made me a better case manager and a better advocate. I have decided that I am going to get my Master of Social Work because I am not stopping anytime soon.

I refuse to let this disease define who I am, and I am a PHighter. I have started working with the Pulmonary Hypertension Association to advocate for PH patients and caregivers because I want to live in a world where PH patients can say, “I used to have PH” without needing a lung transplant.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.