"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.
I 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,