My PH Story: Shaye Wallace

June 29,2018

Shaye just turned 18 years old and lives in Houston, Texas. Diagnosed with pulmonary hypertension (PH) when she was nine, Shaye started having symptoms of dizziness, shortness of breath, and heart palpitations at age seven. Her parents took her to the doctor only to be told Shaye had severe anxiety and attention deficit disorder (ADD). The symptoms continued for two years. Although doctors changed her medications, the anxiety and ADD diagnoses remained.

The true cause of her symptoms was revealed after she fell at school in physical education (PE) class and hurt her upper back. The doctors said she was fine and sent her home. After she continued to complain that her upper back hurt, they finally decided to do a chest X-ray to determine the cause of the pain. That’s when doctors saw Shaye’s enlarged heart and sent her straight to Texas Children’s Hospital.

The cardiologist told her parents she had a severe heart murmur and that something was terribly wrong. After numerous tests, she was diagnosed with PH. Without treatment, she had a year or less to live. With treatment, maybe she’d have five years. It was a devastatingly sad day for her family. From there, her long journey with PH began.

Shaye has been on oral medications, Remodulin, and has had a central line that infuses medication directly into her heart 24/7 since age 10. For eight years, she has endured this devastating disease, which rendered her unable to play sports, participate in PE, or do all of the fun things a kid should be doing.

Shaye’s PH started progressing in 2017, and her parents were told she would need a transplant within the next year. Her mom, Teresa Meyers, moderator of an amazing parent support group on Facebook, had heard of a fairly new treatment for kids with PH called the Potts shunt. Only a couple of hospitals in the United States were doing this surgery, and St. Louis Children’s Hospital was the number one.

Teresa sent Shaye’s records over to Dr. Mark Grady in St. Louis who said he believed she might be a good candidate for the procedure and asked Teresa to bring Shaye there for more testing. If successful, this surgery could prolong having a double-lung transplant and give her more years to live.

In February 2018, Shaye and her mom traveled to St. Louis to meet with the team there. Her tests showed she would be a viable candidate for the Potts shunt. During the surgery, Shaye had massive bleeds due to the size of her pulmonary artery, which was the largest the St. Louis team had ever seen. Dr. Pirooz Eghtesady, the cardiothoracic surgeon, did everything in his power to save Shaye, including having to go back in twice after more massive bleeds. The surgery was a success.

At 17, Shaye is one of the oldest patients to have had this surgery, and it has improved her PH greatly. She is currently weaning off of Remodulin, her central line IV medication, in hopes of getting her central line out after eight years. She can now run for the first time in more than eight years.

This journey is not over by any means, but Shaye has proven she is a warrior, and everyone she has met along the way still continues to PHight in her honor to help her beat this devastating disease called pulmonary hypertension. She has become an inspiration to many young children and continues to PHight alongside them.

To learn more about Shaye’s journey with pulmonary hypertension, please follow her at Smiles for Shaye on Facebook.

Team PH athlete Carl Hicks is riding in the 2018 Team PH Peloton Challenge for Shaye as part of the Let Me Be Your Lungs program.

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