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In 1970, I was born a 4 pound premature girl with unknown complications. At three, I had my only open heart surgery to repair my tetralogy of Fallot with a Teflon patch. Although I grew up normally, I was smaller physically and deeper mentally—feeling intrinsically different because of my entry into the world. Like many others I believed I was "fixed." It was by way of karmic happenstance, and a casual meeting at my gym by a nurse working for an ACHD doctor at OHSU that had “re-educated” me. Three weeks later, I was scheduled for an appointment. I was scared but now alerted of my current condition. I am here six years later being regularly monitored, without another surgery in store at age 48. The awareness of my continued good health led me to be an Peer Mentor, of service to this ever-expanding community, and in hope of inspiring and helping others.
I was born with patent ductus arteriosus, and I had my first surgery at 15 months. Doctors later found aortic stenosis, which was repaired twice by two open heart surgeries when I was a child. As an adult I had my aortic valve replaced, first with a porcine valve, and more recently (28 years ago!) with a mechanical valve. In that last operation, they found and repaired a ventricular septal defect that had been there all along! I have also had a number of dual chamber pacemakers. My life has been profoundly impacted by my CHD in a multitude of ways. I can see both how it shaped my childhood and the very different challenges it brings as adult health issues begin to arise. I’m extraordinarily grateful for ACHA for its information and support, and the opportunity to share with others as a Peer Mentor.
I was born in 1972 with HLHS, a very complex CHD. I was a “blue baby” and the doctors knew right away something was wrong. After weeks in the hospital, I went home and then underwent my first open heart surgery at about 10 months of age, and a second shortly after. I had close follow-up and later annual follow-ups until age 19 when I was told I’d need another surgery; fortunately, I recovered well after placement of a central shunt. Since then, I have been evaluated for a heart and lung transplant twice, diagnosed with kidney cancer, had a kidney removed and thankfully, returned to my normal level of functioning. Until age 45, I’d never known anyone like me, leaving me feeling alone and afraid. I have always, however, tried to live my life to the fullest and not let CHD define me! I went to the 2017 ACHA National Conference in Orlando and I met so many strong, inspiring and awesome people! It was then that I knew I had to be a part of this wonderful organization. To empower, inspire and support those going through life with CHD. No one should have to face CHD alone! That is the reason I am an ACHA Peer Mentor.
“You should not have stayed away so long! You need surgery, and I don’t want you to wait.” These were shocking words from my ACHD cardiologist. Like most adults, I had been living life without properly caring for my congenital heart defect, tetrology of Fallot. I was the lucky one who was the first TOF repair at Emory in Atlanta in 1972 at the age of four. With only a few interventions between four and 40, I figured I was set for life. When my cardiologist told me I needed another surgery, I was stunned. Once again, I was lucky. I was referred to a wonderful surgeon who was able to save my pulmonary valve and repair my right ventricular outflow tract. As I recovered and realized how truly fortunate I am, I decided I needed to help educate everyone about the importance of lifelong care with an adult congenital specialist.
A “patient pioneer” for correction of Tetralogy of Fallot, I was considered to be one of the first “successful” open heart surgeries in 1965 at the University of Pittsburgh’s Children’s Hospital. Prior to that, I had a Blalock (BT) shunt performed so that my cardiac condition could be managed until the later surgical procedure would have more optimal results. I was told that I was “cured” after surgery, and was not being monitored for quite a few years until one day, I had a happenstance conversation with a pediatric cardiologist who asked who was doing my follow-up. It was then that I learned that ACHD patients must have lifelong care. I feel very fortunate that up until now, post-surgery intervention has been primarily accomplished through annual cardiology visits combined with primary care. It’s been good to have a life. I pursued a relationship with ACHA so that I could offer some support and hope to families and patients who have experienced similar health issues.
I became a Peer Mentor in 2010 in support of my husband, Dave, who was born with tricuspid atresia. Dave had multiple surgeries and always had questions! We were referred to ACHA by our doctors in Boston. I left my banking job and became a cardiovascular technician so that I could understand what the doctors were telling me in order to help care for my husband. We moved to Phoenix, where I worked in Cardiac Care and Intensive Care Units, caring for other congenital heart patients. Dave passed away on his 52nd birthday in 2011, but I continue to work in the cardiac surgery division at a university medical center in Tucson, AZ.
My introduction to ACHA began when my 29-year-old seemingly healthy, athletic son was running in his third marathon. At mile 9, he went into sudden cardiac arrest. He left the local hospital undiagnosed and in a life vest. It took months to get a proper diagnosis and determine the next steps. Unbeknownst to any of us, he was born with a CHD, anomalous origin of the right coronary artery). He had open heart surgery almost six months from the day of the marathon. CHD isn’t only found in young children; it can manifest at any time. When my son was trying to navigate an overwhelming and difficult process, I contacted ACHA, who put me in touch with a Peer Mentor. Although unfamiliar with my son’s specific CHD, she was kind and reassuring; she listened. I want to pay it forward and be a support for someone else who is going through a tough time.
I was born with patent ductus arteriosus (PDA) and membranous subaortic stenosis. I had my first heart surgery at the age of 18 month to repair the PDA. When I was 21 years old I had my second surgery for aortic valve repair and my third surgery in 2009 for aortic valve replacement. I now have a permanent pacemaker as well. I, like so many others, fell out of the healthcare system when I was 12 years old, and learned the hard way the importance of finding a qualified ACHD cardiologist and being a good patient! Living an active and healthy life is my passion. I am a physician assistant in preventive cardiology as well as cardiac rehabilitation. I think my dual perspective (both as a patient and provider) gives me something valuable I can use to help others through the process.
When I was born, surgery was not performed on babies like me with Ebstein’s anomaly and a large atrial septal defect. Growing up, I wasn't able to do most things other children could do. I had my first repair when I was 28. Since then I've had three more repairs, two valve replacements, and pacemaker implants. I am in third degree heart block and pacemaker dependant. Since my last repair I have felt the best I have in my life. I am able to do things I have never been able to do before, and that is my motivation. Within the next year, my goal is to run a 5K without stopping or walking. I know what it is like to go from a wheelchair to running, swimming, and biking. I became a Peer Mentor because I want to help fellow patients through all of the challenges of having a CHD and live a rich, full life.
I was born in Guatemala to a German father and an American mother. Three days later I was flown to Children's Hospital of Philadelphia, where I was diagnosed with HLHS, TGA, pulmonary valve stenosis, an ASD, and a VSD. By the age of three, I had already undergone three open heart surgeries, including the Fontan, and when I was 16 I received a dual-chamber pacemaker. Due to my countless experiences with procedures, hospitalizations, and doctors’ visits, I am interested in empowering patients to take charge of their body by encouraging self-advocacy within medical settings. In my professional life I am a Registered Behavior Technician (RBT), and am completing my master's degree to become a Board Certified Behavior Analyst (BCBA).