30 Days of PH: Quality of Life Improved By Potts Shunt Surgery

by Colleen Steele | November 8, 2020

Day 8 of 30 Days of PH⁣
Topic: Quality of Life Improved By Potts Shunt Surgery⁣

This is Jennica’s story @jenn2104

Our 14-year-old daughter, Brooklyn, was diagnosed with Idiopathic Pulmonary Hypertension when she was 3 years old. After complaining of “her heart hurting” we took her to the doctor, where an ECHO revealed severe PH. She spent a month in Colorado Children’s Hospital after diagnosis and was started on IV medications, along with multiple other medications. After a year, with little improvements to her PH, her doctor recommended that we relocate to sea level. Our family moved from Southern Colorado to the north of Seattle, Washington in 2012.

We initially saw improvements in exercise tolerance and oxygen dependency, but two years after our move, Brooklyn’s PH began to progress at a rapid rate. Her Seattle doctor recommended that it was time to be evaluated for a transplant or consider a more experimental surgery, the Pott’s Shunt. The Pott’s shunt creates a passage from the Pulmonary Artery to the Aorta helping relieve some of the pressure on the right side of the heart.

On Sept 11, 2014, Brooklyn had a Potts Shunt surgery. She was the first child on the west coast to have this surgery and only one of a handful in the United States. The surgery lasted about eight hours and Brook remained on a ventilator for 48 hours after surgery. Recovery was difficult, but she was tough and determined to get home quickly. What was anticipated to be a 2-3-week hospital stay turned into a miraculous 8 days and we were back home with our family.

This surgery has improved her heart function and quality of life. A year after the surgery, Brooklyn was able to be weaned off her IV medications and switched to all oral medications. Her favorite memory of that time was the day that her IV line was removed. Her cardiologist and nurse took her down to the therapy pool and jumped in with her! It has now been six years since her Potts Shunt surgery and she continues to do well. Although Brooklyn is back on subQ Remodulin, her PH continues to be stable and she is able to enjoy her favorite daily activities!

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About the Author

Colleen Steele Colleen Steele was born and raised in New Jersey, and received a bachelor of arts in English from Immaculata University in 1994. She lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.