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I was born with truncus arteriousus. I have had three open heart surgeries and currently have a cardiac resynchronization therapy and defibrillator (CRT-D). I am a research nurse in cardiology. I become Peer Mentor to help others, because someone once helped me. I know that sometimes it can be a struggle to find someone who understands what you are going through—that is why I became a Peer Mentor.
I was diagnosed at birth with a heart murmur and followed by a cardiologist through my teen years. In July 2017, at 57 years old, I began experiencing arrhythmias and scheduled an appointment with a local cardiologist. Following an echocardiogram, I learned that the right side of my heart was enlarged. I underwent several tests and was diagnosed with a sinus venosus atrial septal defect, partial anomalous pulmonary venous return (PAPVR), patent foramen ovale, and a persistent left superior vena cava. I was shocked and quite unprepared when my cardiologist recommended open heart surgery. I immediately began researching my CHDs and found ACHA. I utilized the resources by becoming a member and asking to be matched with a Heart to Heart Peer Mentor who helped me prepare for surgery and followed up with my afterwards. I accessed the clinic directory and scheduled appointments with several centers. I underwent surgery in January 2018 and greatly appreciate the support, guidance and information provided by ACHA. I wanted to be involved with ACHA to support others and become an advocate for appropriate care, clinical research, and insurance coverage.
Other than a few open heart surgeries and having a new pulmonary valve from being born with pulmonary stenosis, I’m just your average 46-year-old husband and father of two beautiful children. Life in general is a gift; I was born with an additional gift, my congenital heart disease. Because of, it I am not weaker, I am stronger. I am not disabled, I am able. I am not a quitter, I am a fighter. Becoming a member of the ACHA was like becoming a member of a second family, a family of several people that have walked in my shoes, a family that we all can relate to physically and medically, a family that stretches throughout the world. I wanted to become a Peer Mentor to have the opportunity to invite others just like us into our family and welcome them with open arms and open hearts—pun intended! I want them to know that life with CHD is no different than any other life.
In April of 2016, during an unexpected trip to the ER, I was diagnosed with anomalous right coronary artery. Open heart surgery was recommended. To say I was stunned with the news would be an understatement. Fear certainly held me captive and I struggled to accept the reality. Through a friend, I found the Emory Adult Congenital Heart program in Atlanta. Three long months later, at the age of 30, I underwent a coronary unroofing procedure. During my recovery, I was in search of an outlet to “give back” by providing support and resources to others like me, especially patients diagnosed with a CHD as an adult. I am thankful to have found that outlet through ACHA and the Peer Mentor program.
At two days old, I was diagnosed with aortic stenosis and bicuspid aortic valve, and so began my lifelong CHD journey. In college, I had an aortic valvuloplasty and a cryoablation to treat SVT. In early 2015, we found out that my husband and I were expecting our first child. We discussed pregnancy with my ACHD provider, so we knew I needed to be monitored through pregnancy. At 22 weeks, my heart wasn’t doing well and I went on bed rest. Our daughter was born early at 35 weeks. Six weeks later, I had the Ross procedure—a double valve replacement. After the experiences we had, I knew I wanted to help others—especially expectant mothers with CHD—and that’s why I became a Peer Mentor. We’re so grateful for the support we received, and I want to in turn support others who may face similar situations.
I was born with a single ventricle. I had a modified Fontan when I was 8 years old, and my childhood was a happy one with slightly overprotective parents. I grew up knowing that I had a “hole in my heart,” but thinking that I had been fixed and there was nothing to worry about. Unfortunately, I found out the hard way that having a heart defect meant having a lifelong challenge, and that there will always be something to worry about. That was when I found out about ACHA, and it was great to meet other people with CHD who had been through such similar experiences! It was nice to know I wasn’t alone—and that is why I am looking forward to being a H2H Peer Mentor, to help other patients realize they aren’t alone, and that we can share our experiences and give strength, support and friendship to one another.
I was born with tetralogy of Fallot in 1954 and in 1966 had corrective surgery. I was doing well until 1969, when I got my first pacemaker. I was small and the pacemaker was large, so it was placed in my abdomen, where it fit. I had it changed in 1972 and again in 1973. In 1980 I got my first dual-chamber rate-responsive unit; I felt better and it was the first time I had a heart rate that changed. I had my device changed several times until 2004 when I got my first ICD. I had that replaced in 2007. In 2010 I got a Bi-V ICD and now I am doing quite well. From the early days in the 1970s, my doctors would ask me to speak to other patients in the hope that seeing such a young person with a pacemaker would help them adjust to the idea for themselves. Since then, I have continued to speak to new patients and families in diverse forums as a patient and in my career as a medical administrator. Now, I am looking forward to meeting new people and sharing my experience as a H2H Peer Mentor.
It's hard to believe, but I was 61 years old before my congenital heart defect was correctly diagnosed! I have Anomalous Left Coronary Artery from the Pulmonary Artery. It is more commonly referred to as ALCAPA. I always knew I had a congenital heart defect but technology in 1953 did not exist to determine that it was ALCAPA. When I was 4 months old, I went into heart failure and was rushed to a hospital where some of the early pioneers in pediatric congenital cardiology had just started working. In 1963, I spent my 10th birthday in that same hospital undergoing my first cardiac catheterization. They still couldn't tell that I had ALCAPA but they did advise my parents that I would need to see a cardiologist every year. Three years ago, I had my first cardiac MRI. The cardiologist who saw my results identified ALCAPA and referred me to my first adult congenital heart specialist. The specialist introduced me to the Adult Congenital Heart Association and encouraged me to become a Peer Mentor. Serving in my role as a Peer Mentor has been part of a dream come true. I am now 64 years old and each time I advocate for others with CHD, I remember the little girl I was and am so grateful for the adult I have survived to become.
Tony is the father of Dr. Anthony R. Cordaro, Jr., one of the original co-founders of ACHA. Tony was involved from the beginning of ACHA as one of the first board members helping the organization through its initial growth phases in securing its 501(c)(3) designation and assisting in the success of its first conference. After taking a leave from an active involvement for a few years, and seeing the phenomenal growth of ACHA, Tony wanted to get back involved as a Peer Mentor for the organization. Tony says he is humbled at seeing what the organization is today with its exponential growth. Most importantly, he is deeply impressed at how many lives of individuals and families that ACHA has touched and is touching today in both subtle and dramatic ways.
I was born with transposition of the great vessels, pulmonary atresia and ventricular septal defect—just five years after my sister was born with the same defects. It was as if I grew up with my own personal H2H Peer Mentor. Having someone who shared the same experiences and understood what it meant to be living with CHD was priceless and made me feel “normal”—something I took for granted. I lost my sister in 2002 and it started to hit me that we weren't “fixed” and CHD was always going to be a part of my life. Thankfully, my mom and I discovered ACHA and attended a conference in 2011, which was life-changing. It was so incredible to be in a room with hundreds of people who shared similar life stories. Hearing about all of the hard work ACHA has been doing to improve the lives of patients and families was inspiring. Being a social worker, it felt natural to become a Peer Mentor and provide support and education to others with CHD. I'm thrilled to have the opportunity to be a part of this remarkable program and organization.