OUR JOURNEYS

Patient story

Edna Irene Ohrbom

"I asked questions of the PA from my knowledge from years prior. I was dismissed and told that there was nothing to do with pulmonary hypertension until the late stages and that I should not have asked questions."

Edna Irene Ohrbom

I first heard the words pulmonary hypertension about ten years ago when a radiologist thought he saw thickening on the right side of my heart on a chest x-ray. He wanted prior chest x-rays to compare. At that time I did research on the web and was scared when I saw that life expectancy was two years. I was grateful when I was told that I did not have it.

Edna OhrbomFast forward to December 2010 when I was at a physician’s assistant (PA) appointment to go over an echocardiogram which stated that I had pulmonary hypertension. Those words jumped off the page. I asked questions of the PA from my knowledge from years prior. I was dismissed and told that there was nothing to do with pulmonary hypertension until the late stages and that I should not have asked questions.

Having learned the importance of being my own advocate I did not take the PA advice. I called the Pulmonary Hypertension Association helpline and received life affirming advice about how to get a PH specialist. I found one on the web site. Thus began my journey with being diagnosed with pulmonary arterial hypertension. The specialist was great and at the first meeting spent an hour with me explaining the different groups of PH and the tests I needed to determine what type I had.

In July 2011 a few days after my 53rd birthday, I was on the table for a right heart catheterization when I heard the team called for the drug Flolan to be sent up. Since I was told that if the pressure were too high they would do a Flolan follow up study, I knew that I had pulmonary arterial hypertension. I started to cry. I said, "Lord I cannot even dry my own tears" because my hands were tied down for the procedure. I was put on Letairis and my most recent echocardiogram shows that my pressures are in the normal range. I am grateful to PHA for the support and research they provide.

 

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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.