If you think you might benefit by being matched with a Peer Mentor, please click here for a support request application.
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.
I was born with coarctation of the aorta and a bicuspid aortic valve. Thanks to wonderful care from a heart surgeon and pediatric cardiologist, I was able to spend most of my childhood and adolescence believing that my condition was “fixed.” But after many visits with my ACHD doctor and a stent procedure last year, I’ve come to embrace the fact that my heart condition is something I will always need to monitor and tend to. ACHA has connected me with many individuals who have shown me what it means to thrive in spite of having a CHD. For me, “thriving” means getting to do the things that I care about, like exercise and work and spending time with people I love. I am excited to work as a Peer Mentor to hear what thriving means to other people — and helping them take steps to get there.
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.
Hi, I'm Jen and I'm a half-hearted entrepreneur of a brick-and-mortar DIY art studio in Northern California. Along with having only two chambers, I was born single vertical with situs inversus totalis. I've had a total of three open heart surgeries; the last was my modified Fontan in 1989. I'm grateful my parents raised me to not be a victim of my condition, but to go for whatever I wanted in life. I have been a graphic artist, a fused glass artist, an elementary school teacher and now have owned my own small business for 18 years. I have a major love for travel and backpacked to 15 different countries in Europe after college. While owning my shop, I've been grateful to host fundraisers for others with CHD who like me, struggle with medical expenses. I've had the privilege of meeting wonderful kids and adults with CHD and realized I want to give support to people with CHD on a larger scale. I want to be the Peer Mentor I wish I had when I was going through my surgeries and the tough times in my life. My goal as a Peer Mentor is to empower others to not let their heart condition defy them, but instead to help them thrive to live the best life they can.
I was born with tetralogy of Fallot in 1985 and gave my parents quite a scare, being the first born. But because of their advocacy and making sure I was always under the right care, I have been living a fairly normal life and advocate for my care. I am currently living abroad, so ACHA has been a great resource for me. Back in 2014, when I had my pulmonary valve implantation, I reached out to the Peer Mentor Program. My experience with my Peer Mentor made me realize that I want an opportunity to give back and support others in their CHD journey! I am blessed to still have the support of my family as well as my husband and two young children.
As a child, I witnessed my mother's struggle with a heart condition, unaware that it would become my own battle in adulthood. Throughout my twenties, I experienced unexplained symptoms, but they were dismissed by my doctor. This left me feeling hopeless and questioning my mental health. Then, on February 26, 2022, everything changed. During a life-altering incident on the freeway, I felt intense chest pressure, a racing heart, and nearly passed out behind the wheel. Recognizing that something was seriously wrong, I sought a second opinion. Finally, I was diagnosed with a heart condition, underwent surgery, and regained my ability to breathe and have energy. This journey led me to embrace natural healing through diet, yoga, meditation, sleep, exercise, and water intake. Currently residing in LA County, I'm pursuing my dream of learning herbalism to open a healing-focused cafe. I believe that what we consume can either heal or harm us. Through becoming a peer mentor, I aim to provide support to CHD patients and anyone impacted by it. I want to inspire hope and spread awareness. Joining the ACHA Heart to Heart community, I'm grateful for the chance to share my journey and make a difference. Together, we can find strength and inspire hope.
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 diagnosed at birth with Ebstein’s anomaly but was lucky enough to not have surgery until I was older. At 7 years old is when I underwent open heart surgery to replace my tricuspid valve with a porcine valve. About two weeks after my surgery, I developed arrhythmias, specifically atrial flutters, due to the scar tissue left from the surgery. A couple of years later my original porcine valve had calcified and needed to be replaced. At this point technology had advanced so much that I was able to have a bovine valve implanted via catheter instead of open heart again. While I still suffer from flutters from time to time, I live a very active, “normal” life. I have never allowed my defect to define me or to limit me and I want the same for my mentees. I decided to become a mentor to give someone in my similar situation the hope and strength to know that they are strong and can overcome anything that comes their way.
I was born with tetralogy of Fallot and had a full repair done at 9 months old. I fell out of care for 10 years believing I had been fixed. When I was 17 I learned that being born with a CHD required lifelong care. I had two healthy sons who were just four and one when I needed my pulmonary valve replaced in 2012. It was then that I turned to the Heart to Heart Peer Support Program for support. ACHA is a wonderful organization and this program was an immense help to me. I am honored to have the opportunity to work with them and give back to others.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.