30 Days of PH: Potts Shunt

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by Jen Cueva |

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Day 20 of 30 Days of PH⁣⁣ Topic: Potts shunt⁣⁣ ⁣⁣ This is Teresa’s story @leavesfromthetre⁣⁣ ⁣⁣ Shaye turned 19 in May, she was diagnosed with PH at 9. Her symptoms of dizziness, shortness of breath, and palpitations started at 7. The doctors told us that Shaye had severe anxiety and ADD.⁣⁣ ⁣⁣ After she fell out at school and continued to complain about upper back pain, a chest x-ray was finally done. That showed an enlarged heart, they and sent her straight to TCH. She had a severe heart murmur. After numerous tests, they told us that she had PH. Without treatment, she had 1 year or less to live, with treatment, maybe 5. It was a devastating day for us, but we knew we would not give up on Shaye! ⁣⁣ ⁣⁣ Her journey with PH began. She has been on oral meds and remodulin. She has a line that infuses meds into her heart 24/7 since age 10. She's been unable to play sports or do the fun things a kid should enjoy. ⁣⁣ ⁣⁣ PH started progressing in 2017. We were told she would need a transplant. I am a moderator of an amazing parent support group on FB. I learned of a fairly new treatment for PH kids called the Potts Shunt. Few hospitals in the US were doing this surgery, St. Louis was number one. ⁣⁣ ⁣⁣ I sent Shaye's records to them, they responded and believed she would be a candidate. But more testing was needed there. This surgery could possibly prolong having a transplant. Last February, Shaye and I, with her Grandmama Debbie, traveled to St. Louis. She was a candidate and the surgery started. During the surgery, she had some massive bleeds Dr. P. Eghtesady, the cardiothoracic surgeon did everything in his power to save Shaye. ⁣⁣ ⁣⁣ The surgery was a success and it has improved her PH greatly! She is currently weaning off of her IV meds and started taking Uptravi (oral med) in hopes of getting rid of her line. This journey is not over, but along the way, Shaye has proven she is a warrior. Those whom she's met continue to PHight in her honor to help her beat this devastating disease, PH!⁣⁣ ⁣⁣ She has become an inspiration to many children and PHights alongside them. Shaye means "Admirable", fitting for this PH journey. You can follow her on IG or FB @PHenomenalsick

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About the Author

Jen Cueva avatar
Jen Cueva Jen is a Coordinator for Clinical Operations at BioNews Inc. (the publisher of this site) and a columnist and forum moderator for Pulmonary Hypertension News. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone. In her weekly column, she delves into the roller coaster of emotions that come along with PH. Having this opportunity to play a role in helping others become more informed and educated, so they are more empowered in their journey is meaningful and powerful for her. Working with Clinical Operations, Jen has the opportunity to help improve the quality of life for those in the rare disease community. She is grateful to work in Clinical Operations because of her lifelong passion for helping others. Jen lives in Southern California with her husband. Together, we PHight stronger.

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30DaysofPH, awareness, Potts shunt
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