OUR JOURNEYS

Patient story

Brandi Stickney

"I had gone to see my primary care physician many times. He kept telling me it was asthma and gave me an inhaler. If that didn’t work, we’d do a chest x-ray. This went on for about five months until I’d had enough and quit going to the mall because I kept passing out."

I was diagnosed in November 2002 right before Thanksgiving, which was shortly after my daughter had turned seven months old. I was fairly healthy growing up, a little slower than the other kids, but I was told I was just lazy..hmmm. My husband, daughter and I went to have our first family Christmas portraits done when I became weak, dizzy, short of breath and ultimately, passed out at the mall. I was rushed to the emergency room where I was told I had an enlarged heart and would need to stay in the hospital to find out what was wrong.

Brandi StickneyI knew something was wrong prior to this. I had gone to see my primary care physician many times. He kept telling me it was asthma and gave me an inhaler. If that didn’t work, we’d do a chest x-ray. This went on for about five months until I’d had enough and quit going to the mall because I kept passing out.

I went through several tests during my week long stay in the heart wing. Finally they told me I had primary pulmonary hypertension (PPH) along with asthma. I was told I had six months to a year to live. YIKES!! At least I would make my daughters first birthday. I was a trooper and kept going. After a year of being almost bed ridden I was put on Tracleer. YAY!! Prior to this I was only on Lasix and oxygen. I was told Flolan did not work for me during the right heart catheterization trial. After being put on Tracleer, I no longer needed the oxygen. I was sent to Stanford in December 2003 for heart/lung transplant evaluation. I was told I needed to come back in March to be evaluated for any congenital defects.

In March 2004, we went back to Stanford and they found a HUGE atrial septal defect (ASD). I had probably had a hole since birth, but the strain from child birth probably made it bigger they said. In April of 2004 just after my daughter’s 2nd birthday, I had my ASD repaired and my diagnosis was changed from PPH to secondary pulmonary hypertension (PH) due to an ASD. I felt great for a few years, but just recently started to feel awful again. In April of 2012, I was put on IV Remodulin and have been doing pretty good. My daughter and I are active in raising PH awareness and she even made a PH video that is on YouTube =) It's called Paige for PH awareness. I love to meet and chat with PH patients and you can find me on Facebook also.

Thank you all for reading my story and please, breathe easy my PHriends,

Brandi Stickney

 

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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.