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Patient Story

Shaye's Story

As told by her mother, Teresa Meyers

"Her doctor would say her heart palpitations, dizziness, sweating, nausea, chest pains and shortness of breath were all due to anxiety."

Shaye is 12 years old, diagnosed with primary pulmonary hypertension (PPH) in March 2010. We live in Houston, Texas and see the pulmonary hypertension (PH) team at Texas Children's Hospital in Houston. Shaye has a central line and is on IV Remodulin, Revatio, Tracleer and Coumadin as well as Prevacid.

ShayeShaye was diagnosed with extreme anxiety in 2007, but during the two years that followed her symptoms would continue to get worse. Her doctor would say her heart palpitations, dizziness, sweating, nausea, chest pains and shortness of breath were all due to anxiety. What we would find out later is all of this was caused by something else, something we could never have prepared ourselves for.

Shaye's story begins on February 19th, 2010. She fell at school in her physical education class and hurt her back. The nurse said she was fine and sent her back to class. She came home and we did heating pads, Tylenol, etc and a week later she still wasn’t feeling better. We decided to take her to the pediatrician. Her dad took her, and they sent them to the hospital next door for x-rays thinking she hurt her back somehow. The doctors told them it would be about two hours before the results would be back and that they would call us.

A couple of hours passed and they called my husband and told him that she had fractured her spine. Of course, “Are you kidding me????” was our reaction. They said she needed to be taken to the Texas Children’s Hospital emergency room (ER). I left work and went by to get the x-rays to take with me. Then I picked up Shaye while my husband stayed home with the other three children. We left for the hospital, which was about a 30 minute drive from where we live. We waited and waited to be seen--it seemed like forever—and we finally were taken to a room.

"as soon as we were in there the heart doctor came in and told me they suspected pulmonary hypertension. We had no clue what that was."

The ER doctor first listened to her chest and asked, "She has a heart murmur?" I said no. He said, "She does now and it isn’t a good one." He said he was going to go look at the x-rays and would be back. When he returned about 45 minutes later, he had another doctor with him who he introduced as the cardiologist on call. Of course, when I heard cardiologist, my heart sank. He asked if I wanted the good news or the bad news first. I said the good news, I just wasn’t ready to hear anything else. He said the good news is that her spine and back were perfectly fine. The bad news is something is wrong with her heart! My heart sank.

"We have taken a step back and learned to look at life differently, because you just never know when your child or someone you love can be taken from you. Life as we knew it has been changed forever."

The cardiologst took over and told me that he was ordering an electrocardiogram (EKG) because the x-ray also showed an enlargement of the ride side of her heart. It took a very long time it seemed--at least an hour and a half. He told us they were admitting her for more tests. We were taken to her room at about 5 am. I thought we would be able to get some rest before more tests were done, but as soon as we were in there the heart doctor came in and told me they suspected PH. We had no clue what that was, but our lives as we knew it was about to be changed forever!

The reason for her back pain when she fell, the doctor said, was due to her lungs operating at full capacity because of the high pressures. When she fell, she felt pain. We have been told that without medication she would live about a year. With medication, they aren’t certain. It all depends on the medications and how they work. Her levels are severe and all we can do is hope and pray the medications keep her levels low to slow down the progression. PH is a progressive terminal illness, so there is no cure. Hopefully we can slow the progression down. We have taken a step back and learned to look at life differently, because you just never know when your child or someone you love can be taken from you. Life as we knew it has been changed forever.

 

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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.