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.
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.
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.
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 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.
I do not have a single heart defect; in fact, it’s my heart condition that makes me an effective voice, as I am a dextrocardia, single ventricle, situs inversus, Blalock-Taussig shunt, Fontan procedure baby. I make each day count and try my best to live my life to the fullest. Every now and then when I forget have CHD, my heart reminds me to take it slow and enjoy life. My condition has given me the determination and willpower to get through life and try to make it better for those around me, reassuring them there is a reason I was born with this condition and that perhaps it’s to help others. My decision to become an ACHA Peer Mentor is based on my own life experience. I want others to know that we are and you are not alone; there are tools that can help manage CHD so you can live a full life.
I was born in 1956 with a large ventricular septal defect, pulmonary stenosis, L-TGA and was a “blue baby.” My first surgery was in 1960; I’ve been told I am one of the oldest (native) Michiganders with severe complex congenital heart disease. After that, I was able to carry on a fairly “normal” life including giving birth to a daughter. I also have five grandchildren. In 2009, I had sudden cardiac arrest due to v-fib, and after a month on life support, lived to tell this tale. My next step was another heart surgery with a shunt and an ICD implant. In addition, I suffered with a bout of CHF and have had several defibrillator surgeries. I have always been a proponent for CHD awareness, so when I learned about the Peer Mentor program, to possibly help more people, I decided to take that step. I am excited to lend hope, inspiration and encouragement to those who may benefit. I also would like to help empower individuals to be an advocate for their own care and to provide resources on how to live a more fulfilled life with CHD.
I was born blue. My mom was told I had some heart “problem” and would probably not survive. When I was 18, my heart defect was diagnosed as Ebstein’s anomaly, a malformation of the tricuspid valve. I had my first open heart surgery in 2015 at age 57. Recovery was a long, slow process and I learned to live one day at a time and to celebrate small successes along the way. I strive to maintain a lifestyle as active as possible by participating in 5K walks, indoor triathlons, yoga, and swimming. One of my favorite activities is walking our dog Kovu in the beautiful Pine Bush Preserve. I’ve learned to thrive, not just survive, with Ebstein’s. ACHA has enabled me to not feel alone with my disease. I am hoping that as a Peer Mentor I empower, support, and encourage others with congenital heart defects to live their best lives possible.
I am the mother of two daughters, both born with similar heart defects (transposition of the great vessels, ventricular septal defects and pulmonary stenosis). Unfortunately 12 years ago, at the age of 24, my oldest daughter Stacey passed away. My younger daughter Jill continues to thrive and live a wonderful life in spite of her CHD. Jill and I found ACHA in 2011 and it has been life-changing for both of us. We both have learned so much and receive comfort knowing there are so many other people in our situation. I am hoping as a Heart to Heart Peer Mentor, I will be able to offer support and provide resources to others as well.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.