If you think you might benefit by being matched with a Peer Mentor, please click here for a support request application.
I was born in 1958 with the congenital heart disease (CHD) condition called tetralogy of Fallot. It was decided to wait before I had repair surgery. My first open heart surgery was at about age five at Naval Hospital in San Diego. Shortly after, I required another open heart surgery. In 2014, after a fairly normal active life, I was out of breath and dizzy most of the time. My adult CHD doctor prescribed a pulmonary valve replacement. In 2017, after a gym class, the electrical system in my heart was erratic and I required an implantable cardioverter defibrillator. Since my surgery in 2014, I, along with my husband who is also a CHD patient, see my ACHD doctor every year. I realize how challenging it can be to be a CHD patient and spouse. I would like an opportunity to help others through their CHD experiences.
I was born with Shone's complex/syndrome (multiple left-sided heart defects) and I am thriving! My surgeries have included coarctation of the aorta repair, Ross procedure, Bentall procedure, and mitral valve replacement. I grew up in continual cardiac care with significant physical limitations as a child. At the age of 15 I had valve replacement surgery that enabled me to thrive. I obtained Bachelor’s and Master’s degrees, went to culinary school, opened a restaurant, lived and worked in Europe and climbed Machu Picchu. At age 30 I became symptomatic again and was reminded that I am and always will be living with CHD. Now, after two open heart surgeries in two years (with two new mechanical valves), I am ready to thrive again! I am now living my dream life in a tiny home by the beach with my husband and dog. I am excited to be an ACHA ambassador—to be an advocate for the CHD community and to empower others to thrive.
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 in 1982 with total anomalous pulmonary venous return (TAPVR), a rare congenital heart defect. Over the years, I’ve undergone multiple open heart surgeries, lived with the effects of congestive heart failure, and relied on a pacemaker for four decades before ultimately receiving a heart transplant at age 40 in 2022. Today, I’m a husband, a father of two, and living a full and meaningful life. My journey has taught me resilience, perspective, and the importance of hope. I know how overwhelming it can feel to face complex medical decisions—especially the possibility of transplant—and I want to be a source of support for others in that position. As a Peer Mentor, I’m here to share my experience openly and walk alongside anyone navigating the realities of living with a heart defect. There is life on the other side of the hardest chapters—and it can be filled with strength, joy, and purpose.
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 was born with a unicuspid aortic valve that was monitored throughout my childhood and early adulthood. Other than a heart murmur, I was asymptomatic and didn’t need intervention until I was 31 when I had open heart surgery. Before my surgery, I found ACHA and I had the opportunity to meet with a Peer Mentor, which helped me overcome pre-surgery anxiety and connect with another CHD patient for the first time. Having a CHD has taught me to prioritize my health and wellbeing as well as to challenge myself to go beyond my comfort zone. Through my experiences I have found it’s so important to be your own advocate and to have a positive support team. I’m grateful and excited for the opportunity to help others navigate their own unique heart journey.
Hi, I’m Helen. At the age of 23, I was diagnosed with a rare congenital heart defect, Ebstein’s anomaly, a malformation of the tricuspid valve, and an ASD. I have had two heart surgeries—the first to repair the defects and the second to replace the tricuspid valve with a porcine valve. I have had several pacemakers since 2002. In 2023, my pacemaker was upgraded to a CRT-D. In addition, I’m in permanent A-fib. With all this, I am living a wonderful life. At 76 years young, I have been married for 47 years. I’m on a shuffleboard team, and play board games twice a week, and I love reading and photography. I have discovered that a positive attitude can get you through any roadblocks life sends you and I am a firm believer in self-advocacy. As a Peer Mentor, I hope to support, and encourage others going through the maze of congenital heart disease.
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.
I was born with pulmonary atresia with a ventricular septal defect and multiple aortopulmonary collateral arteries. By the age of three I’d had three modified BT shunts, closure of my VSD, and a conduit with pulmonary valve implant. I’ve since had my conduit replaced, two new valves (most recently a Melody valve), and an ICD implant in 2012. While my life has always been a bit of a rollercoaster, I wouldn’t change it for anything because it’s made me who I am. I love crafting, camping, and hanging out with my husband and two crazy cats. I’ve hiked through the Smokies and recently saw the Redwoods. As a Heart to Heart Peer Mentor, I hope to educate others and let them know they’re not alone. I’ve never let my CHD slow me down and I want to encourage others to live life to the fullest as well.
My name is Alison G. I was born in Inkster, Michigan, and I currently reside in Kalamazoo, Michigan. I am the mother of three girls and the grandmother of six. I was diagnosed with tetralogy of Fallot at birth, and since then, my heart journey has been pretty successful. When I was 11, I underwent a Blalock-Taussig shunt procedure. At twelve, I had a complete valve replacement. Just recently, this past August, I had my valve replaced again. Throughout my life, I have faced challenges with strength and resilience. The support of my family has been instrumental in my journey, and I am grateful for the love and encouragement they have provided. Despite the medical hurdles, I have managed to lead a fulfilling life, cherishing the moments spent with my children and grandchildren. My story is a testament to the advancements in medical science and the enduring human spirit. I continue to approach each day with optimism and hope, looking forward to what lies ahead in my heart journey.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.