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Patient story

Nikki Rogers

I was diagnosed with primary pulmonary hypertension back in June 2004 at the University of Colorado. I am 26 now. I have a five year old daughter. At the time I was diagnosed, I had gone in to the hospital here in my own town in Cortez, CO. I went into the hospital after staying home for 5 days in massive pain. My liver was swollen so much I looked pregnant. My blood pressure was said to be 3 times the amount that it was supposed to be.

I stayed in the hospital here for 2 days and then got flown out to University of Colorado Hospital where I believe I stayed for 5 days. They took very good care of me. One of my doctors that I remember was Dr. Karen Fagan. She was great.

I was put on medication and my heart catheterization showed that my blood pressure had dropped back to its normal level. I still take my medication and check in with my primary care physician here in Cortez. Due to financial situations, I haven’t been able to get anywhere else or up to Denver. I am 26 years old with a five year old little girl. We only have each other. And most of all she only has me. This disease has changed my life in many ways. I still don’t understand it. But the more aware we become the better. Maybe one day we will have a cure.

 

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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.