Patient story

Eleanor Everett

In 2002 I had gone to so many doctors but no one knew what was wrong with me. My legs and feet were so swollen that it hurt to walk. I then developed a dry nagging cough that seemed to bother me mostly at night. I was so short of breath that I couldn't walk to the lunch room. I even started coughing up blood.

On may 28 of that same year I was sent to Maine Medical Center in Portland. After weeks of testing I was diagnosed with Pulmonary Hypertension. Because I was seven months pregnant, surviving child birth was very slim. I was told that I could die. Although I told them that I was going to be fine, they were concerned. On July 14, I gave birth naturally to my son William -named after Dr. Williams who got me through my ordeal. I can no longer work, but I spend my time writing and taking care of my three children. I am on Flolan with no oxygen and I do very well.


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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.