Breathless: Living with pulmonary arterial hypertension
Posted: November 22, 2022 | Word Count: 479
Provided by Merck.
When Colleen was 35, her life was going exactly as she’d planned. She had a management position in a large company that she loved and was thrilled to be expanding her family with her husband after giving birth to her second child.
But shortly after, she noticed something wasn’t right as she became out of breath after little effort or exercise. When she didn’t feel any better a year later, she went to see her doctor about it. And that’s when her medical journey began.
Her primary care doctor initially diagnosed her with asthma, but Colleen found herself getting worse, not better, as the years went by. After two and a half years of escalating asthma and COPD medications, her primary doctor finally referred her to a cardiologist.
After some tests, the cardiologist shared difficult news. He told Colleen she had pulmonary arterial hypertension (PAH), a rare, progressive (worsening over time) disease that often leads to limited physical activity, heart failure and reduced life expectancy due to the heart’s inability to deliver sufficient blood to the lungs. Most people have no known family history of the disease.
“It took so many years and doctors to figure out why I was so sick. When I finally learned it was PAH, I had no idea what it meant,” said Colleen. “I was only 38 when I read that I had only a few years to live. I’ll never forget that. By that point, my oldest was 7 years old and my youngest was 3 years old so I was so worried for them and my husband. It’s now been 15 years since my diagnosis, and I’ve been able to manage it thanks to excellent care. I’m so grateful to be alive.”
While some people with earlier stages of PAH often do not look outwardly sick to others, Colleen wants others to know that having this condition is not easy. The lives of people with PAH may change dramatically due to the physical burden created by PAH. They may also experience financial burdens, unemployment or social isolation.
“As my disease progressed, I had to make lifestyle changes. I couldn’t make it to the sidelines of a baseball field to watch my son play in a game,” said Colleen. “I was truly relegated to living on the sidelines myself. Eventually I had to leave my career to focus on my survival.”
Leaning on a support system of loved ones helped Colleen cope, in addition to working with her doctor. Since her diagnosis, Colleen has dedicated her life to helping people with PAH and raising awareness of the disease.
“Whatever others can do to lift up the community and spread awareness of this devastating disease is appreciated.”
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