Welcome to My Personal Page
My name is Misty and I am passionate about spreading awareness for congenital heart disease!! When I moved to Nashville nearly 5 years ago to work as an RN in the Pediatric Cardiac ICU (and eventually as a Case Manager in Outpatient Cardiology) at Monroe Carell Jr. Children's Hospital at Vanderbilt and saw how many children and families were cared for through our cardiology services, I just knew we needed something more for these families! Something outside of the hospital setting to bring these amazing kids and their families together with the medical staff who cared for them. I found out about walks specifically for congenital heart disease and with the help of some fantastic committee members, Nashville is now celebrating its FOURTH Walk this year! My professional role has changed over the last yearr but my passion for CHD awareness most definitely has not!
I am a congenital heart disease survivor. I was born with coarctation of the aorta and bicuspid aortic valve. At 7 days old, I underwent an end-to-end anastamosis to repair my coarctation and again at 18 months old. I developed aortic stenosis and underwent an aortic valvotomy at 26 months old. Unfortunately, I ended up having to need an aortic valve replacement and at 4 1/2 years old, I underwent the Konno procedure to replace my native aortic valve with a 19mm St. Jude Mechanical Valve. I take Coumadin daily and will celebrate my 31st birthday this year with no interventions since my last surgery!
I not only walk for myself, but I also walk for my nephew, Drew. He was born with Truncus Arteriosus and underwent multiple surgeries throughout his life, including several as a teenager. On November 10, 2013, our family's lives changed forever. Drew was living with my parents and this particular Sunday was like any other day. Drew went to breakfast with my parents and then grocery shopping, which he actually loved to do! He then left early that afternoon to attend his weekly get-together with his church friends to play soccer at a local park. Before they started playing, Drew began to complain that he didn't feel well and went to sit down. He was conscious long enough to tell his friends to call my mother and after several resuscitation attempts both at the park and in the hospital, he was gone. My family would learn later through my cardiologist that arrhythmias can be very common in individuals with truncus arteriosus in later years. He was only 20 years old. It was the worst day of my life, my family's lives. Drew was full of life and lived each day as if it were his last. He made friends wherever he went and had a smile that could make even the angriest of people happy. His laugh was contagious. He truly lived each day as it came and took such joy in nature and the little things that are taken for granted each day. He loved family and spending time with them, especially during the holidays. He is a light that went out far too soon and he is missed every single day.
It is because of my nephew and every child who has been 1 in 100 that have lost their battle with CHD that I choose to walk. It is because of the uncertainty ahead for myself that I walk. It is for every child I have cared for that I walk. It is for every family that is impacted by congenital heart disease that I walk. I want people to know the devastating effects that CHD can have on individuals and families but I also want people to know that children and adults with CHD can live full and wonderful lives. I want to help raise money for two wonderful organizations that help further research for CHD, support initiatives to ensure continuity of care for CHD patients, and provide aid for families dealing with a CHD diagnosis. Thank you for taking the time to visit my page and support children, adults and families affected by congenital heart disease.
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