OUR JOURNEYS

Patient story

"The hospitals, needles, medicines and doctors get old sometimes but I am blessed to finally have the knowledge that I am not a normal 19 year old nor do I have to try and keep up like one either. I am simply PHenomenal."

Haley Lynn

Haley Lynn

At 17 years old, I had had enough of not being able to breathe. I could never keep up at school, with friends or even my parents. Walking up the stairs was impossible and just walking anywhere caused me to completely lose my breath. This had been going on since I was 11 years old. And it seemed like no one was listening. "I can't breathe" was just something commonly ignored when it came out of my mouth. I had quit my competitive dancing, and I had never participated in any sport at school. Every doctor I went to was at a loss of words and would simply say, "It's asthma." Being a senior in high school, I was finished with this game. My father began to see how serious I was when I couldn't walk from the parking lot of Walmart into the store without passing out. And finally, two months after my high school graduation, I had an appointment with a cardiologist.

Hayley LynnElectrocardiograms, oxygen saturation tests and tons of questions later, Dr. Ray finally entered my room. He shook his head and said, "something is very wrong with you." All I could do was smile. That sounds weird, but I was so ready to know what was wrong with my body. After listening to my heart, Dr. Ray diagnosed me with atrial septal defect (ASD). I was scheduled to have a right heart catheterization to look at the hole that they thought was in my heart. In surgery, they found no hole and instead my diagnosis was pulmonary hypertension.

A little over a year now I have made a great recovery thanks to my pulmonologist, cardiologist and specialist. I was put on two vasodilators (Norvasc and Adcirca) and Coumadin. I couldn't have been more excited to be diagnosed, even though I will be dealing with this disease my whole life. I can truly say I am content. The hospitals, needles, medicines and doctors get old sometimes but I am blessed to finally have the knowledge that I am not a normal 19 year old nor do I have to try and keep up like one either. I am simply PHenomenal.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.