Health awareness

VIDEO: Living with pulmonary arterial hypertension

One woman’s story shows the power of knowledge and support for patients with pulmonary arterial hypertension (PAH)

February 13, 2023

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Pulmonary arterial hypertension (PAH) entered Colleen’s life unexpectedly. She was 35 when she noticed she became short of breath easily. She thought it was due to the weight she gained during her recent pregnancy. A year later, Colleen lost the weight but was still gasping for breath after climbing a few flights of stairs. Colleen wasn’t only feeling fatigued; she was worried. She’d later learn these were symptoms of PAH.

Colleen was first diagnosed with asthma, but her condition continued to worsen. She searched for an answer while daily tasks became more difficult. It took two and a half years for Colleen to be referred to a cardiologist who properly diagnosed her with PAH, one of the five different types of a broader condition called pulmonary hypertension (PH).

What is pulmonary arterial hypertension (PAH)?

PAH is a rare and life-threatening blood vessel disorder that worsens over time. PAH has similar symptoms to other common lung diseases, such as asthma, which can make it difficult to diagnose.

In PAH, the pulmonary arteries — the blood vessels that carry blood from the right side of the heart into the lungs — become thickened and narrowed. This blocks blood from flowing through the lungs, which then raises blood pressure in the lungs. As a result, the right side of the heart must work harder to pump blood into the lungs to keep the body functioning properly.

Recognizing the signs and symptoms of PAH

The exact cause of PAH is unknown, and most people with PAH have no known family history of the disease. People may not notice any early-stage symptoms of PAH, but as the disease progresses, they may experience common symptoms, such as increased shortness of breath, fatigue, edema (swelling of the feet, legs and, eventually, the abdomen and neck), dizziness and fainting spells, chest pain, and heart palpitations (racing or pounding).

People with PAH may notice that their lips and fingers turn blue. PAH can hinder a person’s physical abilities and impact everyday tasks.

“Living with pulmonary arterial hypertension isn’t easy.”

“I had to purchase a scooter to do outside activities with my children. I couldn’t perform basic functions for myself and my family or make it to the sidelines of a baseball field to watch my son play. I was truly relegated to living on the sidelines myself. But through it all, I’ve never given up,” said Colleen.

Raising awareness for PAH

In addition to working with her doctor, Colleen found comfort through her support system. Since her diagnosis, Colleen has dedicated her life to raising awareness of PAH and helping others living with the disease. “It’s important for patients and the community to have knowledge and encourage each other. Whatever we can do to lift the community and spread awareness of this devastating disease is appreciated,” she added.

Colleen and friends holding sign that says "HOPE"