30 Days of PH: How I Cope With PH

by Colleen Steele | November 22, 2020

Day 22 of 30 Days of PH⁣
Topic: How I Cope With PH

This is Margarita’s Story @marmarango

My name is Margarita Arango. I am 39, and my PAH journey has been a long one.

At 19, I experienced symptoms of rheumatoid arthritis and Raynaud’s Syndrome while playing college volleyball. After my first lupus flare, I underwent treatments of high steroids and immunosuppressants for 2 years. Life returned to normal until lupus hit again my senior year. But first, an ER doctor misdiagnosed me with a pinched nerve.

Days later, my optometrist found hemorrhages in my retinas and infarction in my right eye. I was transferred to the ER, where my pinched nerve was diagnosed as vasculitis. While hospitalized, my heart’s ejection fraction dropped 30%. I now believe it was related to PAH. I couldn’t return to school and eventually underwent chemotherapy for 6 months. I have been in remission for 17 years now!

While living in NYC, I started to struggle with the train station stairs. My rheumatologist performed a few tests, and I was diagnosed with PAH.

Eight years later, I am back “home” in Miami and have the best doctor a girl could ask for. Uptravi, adempas and opsumit treatments are brutal at times, but they lowered my PAH by about 20%. I am at my healthiest thanks to the doctors, my family and friends, and self-advocacy.

Here is some hope and advice to those struggling to cope with PH:

YOU ARE YOUR BEST ADVOCATE! Make people take you seriously and defend your rights. whether at home or at the hospital. Nobody understands your body better than you. Also, help others learn to advocate by sharing your experience.

Know your boundaries and make positive changes. When I couldn’t play volleyball any longer, it left a void. Art was something I loved, and I decided to give it a try. I was accepted and received a scholarship to one of the top arts and design schools in the nation.

Take charge of your life! DO NOT let PH or other conditions control you. Live each day as if it were your last. Take care of your body and mind, but also take chances in life, experience new places, and meet new people. Live with passion and joy because you deserve to give yourself that chance!

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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.