30 Days of PH: When PH Is In The Family

by Colleen Steele | November 19, 2020

Day 19 of 30 Days of PH⁣
Topic: When PH Is In The Family

This is Joanne’s Story @Zoanna6464

My PH story is a family one. My mom’s sister, Josephine, died at 23 in 1963. She was newly married, and her symptoms really came out once she became pregnant. She passed very quickly, with an enlarged pulmonary artery. Thirty-two years later, my brother John was 34 and started passing out whenever he exerted himself. He went on an odyssey to find out what was causing this, seeing multiple doctors, and having every test possible. An echo revealed an enlarged heart and pulmonary artery. The doctor suspected pulmonary hypertension. This jogged mom’s memory, and we had Aunt Josie’s hospital records pulled. Her diagnosis: primary pulmonary hypertension.

John was referred to Columbia Presbyterian and placed under the care of two expert cardiologists that specialize in PH. Three years later, I started having the same symptoms and was diagnosed by my brother’s doctors. We realize that there’s a genetic factor at work in our family.

Following our diagnoses, mom’s other sister and her kids all get tested as do my brother’s two daughters. Regular echos become a routine thing in our family. We participate in every genetic study that comes along, hoping to identify our family’s mutation. Researchers have found many genetic mutations linked to PH but haven’t yet found ours. We became very active in the PH community and formed the first local support group that still thrives today. We hold events to raise awareness and funds for research.

In 2015, our worst fears were realized, and we lost my brother John. He fought like a lion for 20 years and suffered not only with PH but two other illnesses. His loss was crushing, but we know he’d want us to stay diligent in the fight to thrive and survive. I’m considered a ‘long-term survivor’. My nieces are tested regularly and I encourage them to stay healthy. We don’t know what triggers a mutation to activate, but we’ve been told to take excellent care of our bodies and spirits. I think that advice can be applied to our whole lives.

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About the Author

Colleen Steele Colleen Steele was born and raised in New Jersey, and received a bachelor of arts in English from Immaculata University in 1994. She lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.