Patient story

Amy Stephens

My name is Amy Stephens. I am a 36 year-old wife and mother of three beautiful children—a sixteen year-old daughter and sons of eight and two. I have been a Licensed Practical Nurse for the past 14 years. I want to say first of all that I have not been given a definitive diagnosis of PH yet, but that is what the doctors are leaning towards.

My story started in 2005 when I was hospitalized for most of my pregnancy with central lines and PICC lines that kept being infected with staph and even yeast. After the c-section I ended up back in the hospital and had my gallbladder removed. In the hospital, I came down with pleurisy and pneumonia and I had to stay for another week and a half.

I gained 77 pounds, with lots of help from my food source, hyperal (hyperalimentation). By that time, I became much less active. I couldn't walk stairs or even keep up with my kids at Easter egg hunts without being so short of breath. I continued to dismiss it as being overweight and out of shape.

I continued to feel worse but it all came to a head on the first of December, 2007. I became very nauseated at work and went home. By the end of that evening, I could not breathe and my chest was killing me. I thought it was pneumonia and went to a small town doctor who diagnosed me with pneumonia and bronchitis (no chest x-ray), gave me a shot and sent me home with more medication. I got worse, and went to my primary care physician, but he had no idea what was wrong. He ordered a chest X-ray and a CAT scan, but they were all normal.

I was still getting worse, so my physician sent me to a local pulmonologist. He ordered pulmonary function tests and an arterial blood gas. My oxygen pressure (PO2) was 65 but my O2 was 98%, and the pulmonologist admitted me for pulmonary embolus. I took test after test, but a clot was never found, so I was sent home with oxygen and Coumadin, but no diagnosis.

I was then sent to more pulmonologists about an hour away who did all of the same tests and found nothing. They sent me home on 24.7 oxygen therapy. Finally, at a hospital follow-up visit, they told me they thought it was PPH and referred me to a PH expert in Atlanta, Georgia. I recently had my first appointment with him. He repeated the same tests but he said with that his equipment was better. I have to go back to Atlanta this weekend for a sleep study, and then we will meet back for a pow-wow. Some of my symptoms are the same as what I have read about PH, but my sat’s are high and my oxygen pressure is always low. I am having chest discomfort and PVC’s, and breathing with oxygen therapy is not enough.

I am unable to work and, these days, making a bed is a horrific task. I am terrified because I am at the diagnosis phase. So far, I haven’t gotten any medicine and I feel worse every single day. I am definitely open to any advice to help calm some of these fears.


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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.