OUR JOURNEYS

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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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.