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 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.
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.
In 1970, I was born a 4 pound premature girl with unknown complications. At three, I had my only open heart surgery to repair my tetralogy of Fallot with a Teflon patch. Although I grew up normally, I was smaller physically and deeper mentally—feeling intrinsically different because of my entry into the world. Like many others I believed I was "fixed." It was by way of karmic happenstance, and a casual meeting at my gym by a nurse working for an ACHD doctor at OHSU, that had "re-educated" me. Three weeks later, I was scheduled for an appointment. I was scared but now alerted of my current condition. I am here 11 years later being regularly monitored, without another surgery yet at age 52. The awareness of my continued good health as I have navigated this and recent breast cancer leads me to be a Peer Mentor—of service to this ever-expanding community, and in hope of inspiring and helping others.
I was born in 1972 with HLHS, a very complex CHD. I was a “blue baby” and the doctors knew right away something was wrong. After weeks in the hospital, I went home and then underwent my first open heart surgery at about 10 months of age, and a second shortly after. I had close follow-up and later annual follow-ups until age 19 when I was told I’d need another surgery; fortunately, I recovered well after placement of a central shunt. Since then, I have been evaluated for a heart and lung transplant twice, diagnosed with kidney cancer, had a kidney removed and thankfully, returned to my normal level of functioning. Until age 45, I’d never known anyone like me, leaving me feeling alone and afraid. I have always, however, tried to live my life to the fullest and not let CHD define me! I went to the 2017 ACHA National Conference in Orlando and I met so many strong, inspiring and awesome people! It was then that I knew I had to be a part of this wonderful organization. To empower, inspire and support those going through life with CHD. No one should have to face CHD alone! That is the reason I am an ACHA Peer Mentor.
“You should not have stayed away so long! You need surgery, and I don’t want you to wait.” These were shocking words from my ACHD cardiologist. Like most adults, I had been living life without properly caring for my congenital heart defect, tetrology of Fallot. I was the lucky one who was the first TOF repair at Emory in Atlanta in 1972 at the age of four. With only a few interventions between four and 40, I figured I was set for life. When my cardiologist told me I needed another surgery, I was stunned. Once again, I was lucky. I was referred to a wonderful surgeon who was able to save my pulmonary valve and repair my right ventricular outflow tract. As I recovered and realized how truly fortunate I am, I decided I needed to help educate everyone about the importance of lifelong care with an adult congenital specialist.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.