When Heidi first began to feel ‘off,’ she didn’t think it was the start of a life-changing diagnosis. It was winter, she had just lost her grandfather and she had recently stopped fertility treatments. “I attributed the weight gain and swelling to hormones and maybe grief eating,” she says. Even when shortness of breath crept in that spring, she assumed it was allergies or a sinus infection.
But by July 2018, something started to feel unquestionably wrong. Heidi was walking on a sandy beach when she began to experience what she called ‘trombone heart.’ “It felt like my heart dropped to my feet, and it took forever to beat back making me nearly pass out,” she explained. Though the feeling soon passed, she began to look back at all the other symptoms she had been experiencing.
A few weeks later, when she collapsed going up a flight of stairs, she knew she had to address the problem. “I went down like a ton of bricks,” Heidi said. Her husband found her unresponsive on the floor. “He thought I was gone.”
An emergency department visit labeled the event as syncope, but her primary care provider and cardiologist pushed for answers. An alarming echocardiogram prompted the cardiologist to stop a planned stress test and send her straight to the hospital. A suspected pulmonary embolism was ruled out, but the urgency remained as the doctor demanded a right heart catheterization (RHC), procedure immediately.
By the end of August, Heidi had a confirmed diagnosis of pulmonary arterial hypertension (PAH), a specific type of pulmonary hypertension that affects the arteries of the lungs and strains the right side of the heart.
Getting the Care and Support She Needed
Heidi had never heard of PAH, so she wanted to do her own research. “I work in pharma (pharmaceutical company) and I had health literacy, but I had no idea what it was,” she explained. She found the Pulmonary Hypertension Association (PHA) which helped her identify a PH Center of Comprehensive Care where she secured a second opinion within weeks. By October, she had a formal diagnosis and a treatment plan. Her new specialist started her on medication immediately and she began to see improvement.
Learning to Manage and Live Fully with a Chronic Disease
PAH is treated with targeted therapies that relax and widen the pulmonary arteries, lower pulmonary pressure and reduce strain on the heart. Lifestyle changes, such as a low-sodium diet may also be recommended for people with PAH. After two months, Heidi was feeling better and her lab tests showed improvement. By March 2019, she was enrolled in pulmonary rehab where she could rebuild her strength in a safe, monitored environment. “Being able to exercise again was huge,” she recalled.
Her husband and mother attended appointments, offering support and making sure Heidi wasn’t alone during early recovery. “I was handled with kid gloves, but lovingly,” she joked. “With their help, I was able to gain a lot of my independence back.” She even went skydiving with her dad for his 70th birthday, with the approval of her physicians of course.
However, PAH requires close monitoring by your specialist and can result in unexpected health concerns. A fall that injured Heidi’s arm required surgery, disrupted her medication routine and led to right-heart failure. “It was a mountain to climb back,” she said. This is just one example of the peaks and valleys that Heidi has learned to navigate as part of living with PAH. “It takes a tremendous amount of resilience.”
Finding Community and a New Purpose
As she struggled to adjust to her new normal, Heid found tremendous comfort in the PAH community she had become a part of thanks to her earlier research. She became deeply involved with PHA, which led her to discover the American Lung Association. “I’m inspired by other patients,” she said. “If people on oxygen and pumps are out there living their lives, I’m a jerk if I’m not making the most of mine.” Heidi currently attends meetings across the Greater Philadelphia region, helps plan the events and even is a mentor for new patients who feel overwhelmed by diagnosis.
She has fully embraced her diagnosis, bringing her voice to her work in pharmaceuticals as well. There, she is able to put a face to a disease that many people know little about. Additionally, she has a front-row seat to any problems or barriers patients may face. “My voice is one of my strongest tools and I’m going to use it for as long as I can,” she said. “If I need to use my voice for people who can’t use theirs, I will.”
Heidi has found her purpose in supporting others and bringing awareness to an underrepresented disease. “I strongly believe that there are many more of us, and that we are just heavily undiagnosed,” she continued. “We need to make sure everybody gets the help they need and so I want to pay it forward and make sure no one is left behind.”
Blog last updated: February 2, 2026
