Misty Sharpe is a CHD survivor and advocate that works with the Adult Congenital Heart Association (ACHA). She is passionate about ensuring adult CHD patients are not lost to care. She is a heart warrior, daughter, wife, and aunt. Her nephew, Drew, was also born with a congenital heart disease. They share a bond like no other.
Drew was born with Truncus Arteriosus. He had several open heart surgeries and medical interventions throughout his infancy and teenage years. He did not hide the fact that he had CHD. It was part of who he was but certainly did not define him. “He proudly showed his scar and lived his life to the fullest,” Misty said.
Misty remembers a family lake day when Drew insisted they look for a waterfall that he remembered being there. They searched and could not find it. Drew would not let them give up though, he had a drive and passion about him. It spilled into every aspect of his life. He was going to find this waterfall. They rounded the second bend and there it was. A beautiful cascade of water spilling over. And in that moment, everyone was happy.
About a month later, on a morning just like any other, Drew woke up to just another day. He had breakfast, went to the grocery story — life was happening as normal. It was a Sunday so he did what he did every Sunday, went to play soccer with his friends. He had been gone for less than 30 minutes when Misty’s mom got the call. She was told he was having a seizure. He was actually in cardiac arrest. Drew was gone. A regular Sunday turned into a day that changed Misty and her family’s life forever.
Drew’s passing was a shock to everyone. There were no signs that he was not doing well. He didn’t have health insurance at the time of his passing so he had not seen his cardiologist for an annual checkup. Drew had been lost to care for less than two years. He was set to start a full time job that would have provided him with insurance just two weeks after he passed.
“I think Drew’s story is an example of why lifelong care is so important. He fell out of care for less than two years and now he is no longer here with us,” Misty said. His multiple surgeries were not a cure. His medical interventions were not a cure. There currently is no cure, just temporary fixes.
Because of those temporary fixes, we’re in a new frontier. More and more CHD patients are living to adulthood thanks to research. Now that adulthood is not such a far off hope, ACHD patients need to know how to get proper care so they do not have to be lost to care. “Seeing an adult CHD specialist is vital to diagnose those potential issues early on so they can be properly managed,” Misty said. She also believes that ensuring patients remain in care is much more than just education. People can know they need to be seen but may not have access. Lack of insurance, denial of appropriate care, how close you are to an ACHD program — these are only a few of the barriers that many ACHD patients face.
“With each person we lose to CHD, we are reminded why there is a need for more public awareness, research funding, and resources,” Misty said. Project Heart and the Adult Congenital Heart Associated have partnered to fund 3 CHD research projects this year. CHD research is needed and it’s needed now. That’s what we’re here for.