OUR JOURNEYS

Patient story

Mary Ann Konola

I received my initial diagnosis in July, with confirmation in October 2006. University Hospital in Denver discovered the PH was caused by a rheumatic infection of my heart resulting in valvular heart disease and eventually PH.

In early 2007 I should be on the list for a heart/lung transplant after losing about 14 lbs.

In the meantime, Dr. Norbert Voelkel (bless the man!) and the cardiac staff inserted a main line above my heart and I began taking the drug Dobutamine which is delivered the same way Flolan is. For some reason I could not tolerate Flolan. Other meds are Sprironolactone, Lasix, Revatio, Lisinopril and Warfarin. They have all changed my life for the better.

My husband Kurt is the greatest support anyone could hope for, and my immediate family is wonderful. I thank God every day for Kurt, my mother and brother.

I am no longer able to work, so time is spent reading, researching PH, homemaking and trying to live every minute to the fullest!

 

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NORD

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.