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When I was born, the doctors noticed a murmur in my heartbeat. They diagnosed me with ventricular septal defect (VSD) and tricuspid valve regurgitation. I had my first open heart surgery at the age of one to repair my VSD. When I was six, I had my tricuspid valve repaired. Growing up, I did not know anyone else who missed weeks of school for hospital stays, wore Holter monitors, or had a zipper scar. I felt confused when I received comments that I was too young to have a pacemaker and atrial fibrillation. This all changed in 2022. I joined the PACE community of Camp del Corazon, where young adults ages 18 to 25 with CHD meet for a weekend camp retreat in Southern California. I became a peer mentor because I want to bring the feeling of finding connection to those who thought they were alone. Our heart defects are diverse, but our fears and hopes are similar.
Although I have a severe congenital heart defect, I try not to let it stop me from living a full life. I was born with transposition of the great arteries. I underwent three open heart surgeries early on in life. At the time of my last surgery when I was 4 years old, I was diagnosed with Eisenmenger syndrome, which means that I have severe pulmonary hypertension. This limits my physical ability significantly but despite this, I am as active as possible with raising two children, practicing Tai Chi and until recently, working full time in medicine. Unfortunately, due to the progression of my pulmonary hypertension I have had to cut back on work. I still want to help people and give back and am excited to do this through being a peer mentor.
I had congestive heart failure in 2011. After a month in the PICU, I had my first open heart surgery to repair my failing mitral valve, where my surgeon noticed my congenital mitral valve dysplasia and a quadricuspid aortic valve. In the next five years, I accumulated an open heart valve replacement and an emergency transcatheter valve-in-valve procedure. Needing surgery again in July 2021, I had the most transformative summer as I had to decide between a tissue or a mechanical valve. I chose the latter. Adjusting to Coumadin and the responsibilities of adulthood, I deeply craved a space to connect with other heart patients. My "heart journey" is a lifelong embarkment, and I am so grateful to have ACHA to accompany me. Through my experiences, I seek to uplift and support others on their journeys. I enjoy attending music shows and writing poetry. I am finishing my undergraduate degree with aspirations in graduate school and medical school.
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 subaortic stenosis. In 1985, I had my first open heart surgery at Riley Hospital. In 1995, I was one of the first patients in Indiana to have the Ross-Konno procedure. The surgery was such a success that it allowed me to become a successful collegiate swimmer, specializing in the breaststroke. In 2008, my pulmonic valve had become stenotic and resulted in an aneurysm in my aortic arch. After that procedure, I thought that I was finished with the procedures. Unfortunately, when you are born with CHD, sometimes, things don’t always go as intended. Since 2008, I have had seven ablations, three additional open heart surgeries, a thoracotomy, and in October 2023, had a Boston Scientific dual-chamber ICD implanted. Although the path hasn’t always been easy, I feel blessed to have a great support community within the ACHA, along with wonderful friends and family.
I was born with multiple VSDs and a bicuspid aortic valve. I had two surgeries by the age of three. Thanks to my family and my medical team, I only have happy memories of that time and am proud of my scars. I see my CHD as a superpower. It gave me tenacity, determination, and perseverance from the start of my life. Transitioning from pediatrics to adult CHD care was a challenge as I did not know anyone like me. I am incredibly grateful to have found a medical team and resources like ACHA to support me in taking care of my CHD throughout my adult life. I am excited to be a part of the ACHA Peer Mentor Program and am looking forward to offering support to those in the ACHA community.
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 with tetralogy of Fallot in 1947. I've had four open heart surgeries so far: a Blalock-Taussig shunt in 1958, a Waterston shunt in 1967, the total repair in 1980 and a pulmonary valve replacement (PVR) in 2005. I consider myself fortunate to have survived as long as I have; after all, I'm in my 70s! I needed help in making decisions before my PVR surgery and members of ACHA helped me immensely. I just want to return the favor and give back to the CHD community. I know I didn't have any contact with other CHD patients my entire life until just before my PVR surgery when I was introduced to ACHA by my medical providers. It's a great organization and I want to add what I can to it.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.