30 Days of PH: Why I Raise Awareness

by Colleen Steele | November 7, 2020

Day 7 of 30 Days of PH⁣
Topic: Why I Raise Awareness ⁣

This is Barbara’s story

The main thing pulmonary hypertension patients have in common is being misdiagnosed for too long. Prior to my diagnosis, my husband, Chuck, took me to 14 doctors. I had 3 hospital stays and many trips to the ER.

Chuck took me to doctors because of bronchitis that would not go away. Eventually, I was seen by a PCP with the University of Tennessee Medical Group. We thought a group of recent medical graduates would be more up to date on “newer or rare” diseases.

In 2002, an echocardiogram was ordered to check for fluid buildup around my heart. The echo ended up diagnosing my PAH. It went right over my head. Since I had never heard of PH, it couldn’t be too serious, right? I attributed my shortness of breath, the heaviness of my chest, swollen ankles, extreme fatigue, hoarseness, and lightheadedness to my weight, being deconditioned, asthma, or ulcerative colitis.

I missed working with Chuck, our daughter, and son in our family-owned wedding business. I was bedridden and it took over two years to be diagnosed. Since I was not getting sufficient oxygen, I don’t remember most of those years, but my family remembers.

I wondered for a long time why God took away all that I loved so much: the weddings, my girls – the brides – and working with Chuck. I know now that it was so I could raise PH awareness. The PH Association launched a campaign around 2012 using the zebra as a mascot to raise awareness. I wear something with a zebra print every day of the year and have become known as The Zebra Lady. I developed a business card that I give out regularly that explains the zebra analogy and briefly describes PH. Included are graphics of my zebra named PHyllis.

A sad truth about this disease is that PH can be indicated by a non-invasive test called an echocardiogram – if only more physicians knew about PH and its symptoms! The problem is many do not. I don’t blame anyone. If you don’t know about a disease, you just don’t know. But this has GOT to change. The public must be made aware of PH and its symptoms.

http://www.SometimesItsPH.org/

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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.