“I’ve done a lot of cool things as a PH patient.”

By Shannon O’Donnell

“On May 31, 2001, after a year of misdiagnoses, I was finally diagnosed with primary pulmonary hypertension (PH). I was a few days away from kindergarten graduation, so my parents took me home and took me back the day after graduation to start the longest roller coaster ride of treatments and tests. My doctor started me off on an oxygen-based treatment but because I was so reactive to it, we switched to IV therapy (Flolan).

And now 18 years later, I’ve done a lot of cool things as a PH patient. Such as, I went on a ‘make a wish trip,’ attended multiple concerts and musicals, graduated high school, completed an associate’s degree with honors, working on a bachelor’s degree, working for my hospital as a volunteer, meeting the Red Sox baseball team from 2006, met Paul Newman and attended his camp for 10 years, along with many more things. Currently I am on Remodulin, Revatio, Warfarin, Tracleer and some other pills for different reasons.

If you or someone you love is struggling with PH, pass on these words from a very wise animated fish: ‘Just keep swimming’— Dory from Finding Dory, voiced by Ellen DeGeneres.”