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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