‘Sometimes I … cry of pure happiness that I lived this long.’

Gwendolyn Brown has lived with pulmonary arterial hypertension (PAH) for more than 40 years. She has survived a heart attack, three strokes and 11 mini strokes. She leads the Pulmonary Hypertension Association (PHA)’s Cleveland Community Support Group and is a minister at Zion Pentecostal Church of Christ.

Gwendolyn originally shared her pulmonary hypertension journey in Pathlight magazine. The December 2020 issue launched the Pulmonary Hypertension Association (PHA)’s 30th anniversary with stories of the association’s early years, the journeys of long-time survivors and advances in pulmonary hypertension (PH) research. Read on for more of Gwendolyn’s story.

By Gwendolyn R. Brown

When I first showed signs of pulmonary hypertension (PH), I was misdiagnosed and treated for asthma for three years. I got worse, passed out, and my body started swelling up. I couldn’t go up a flight of stairs or do any activities around the house.

In July 1982, I had a heart attack. I was 25 with a 4-year-old daughter.

After a lung biopsy, I was diagnosed with primary pulmonary hypertension (PPH). The doctor told me PH was a rare disease with no cure. He said I should go home and get my life in order because I would not live to see 28 years old.

Living with PH in 1982 was very challenging. I didn’t understand why I had this disease. The only treatments available were channel blockers, blood thinners and water pills. I did what my doctors asked of me. They told me to lose weight, and I did.

New drug

By 1998, my illness took a toll on me. I was on daily oxygen, and my daughter Kennie had become my caregiver. I felt like there was nothing else my doctors could do.

Then I got a call from Victor Tapson, M.D., at Duke University Medical Center to try a new drug called Flolan. I responded well. It brought my pressures down, and I no longer needed oxygen. I was excited to be a part of a new treatment for PH.

Gwendolyn Brown (right) with daughter Kennie

Words to live by

My faith and family kept me hopeful. I knew God had a better plan for me. I told myself repeatedly that this wasn’t going to be the end. Since 1998, I’ve believed, “I have PAH, but PAH doesn’t have me.” It’s something that I live by to this day.

After my family and I moved to Cleveland in 2003, I met my amazing pulmonologist Robert Schilz, M.D., at the University Hospital Cleveland Medical Center. He put me on a trial for Remodulin, which I still take. In 2004, I became a support group leader. My group as brought me more joy than I ever could have imagined.

Living with PAH for this long has allowed me to see how PAH research has grown. Now, it doesn’t take as long to be diagnosed, and there are more pulmonary doctors and clinical trials.

I am amazed how far we have come. Sometimes I sit and cry of pure happiness that I lived this long and got to witness it all.

To read more first-person stories from people with PH, caregivers, families and friends, visit PHA’s Right Heart Blog.

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