If you think you might benefit by being matched with a Peer Mentor, please click here for a support request application.
I was born with Tetralogy of Fallot and had my full repair at 11 months of age. Growing up I went to yearly checkups and was reminded by my mother on the importance of continued follow-up care. It wasn’t until I was 23 and started my career as a pediatric cardiac intensive care unit nurse that I met someone else with a congenital heart defect. Living life not knowing anyone like myself, I wanted to connect with others and become a Heart to Heart Peer Mentor. I want to spread the message on the importance of continuation of care and give others the tools and resources to achieve a healthy and fulfilled life while living with congenital heart disease.
I was born with truncus arteriosus in 1989. I became a member of the “zipper club” at four days old with my first repair. My second repair took place when I was 12. My third repair when I was 25 involved replacing my aortic valve with a mechanical valve, which now requires me to take blood thinners. At 30, I received a diagnosis of having a malformed brachiocephalic vein. With each repair, I’ve gained confidence, resilience, and education that I love to share with others. I’m passionate about helping those in the CHD community to become confident advocates for their health needs and goals. I can’t wait to be a part of your journey to thrive in the best way possible!
My older sister was born with a bicuspid aortic valve and coarctation of the aorta. She has had surgical repair of her coarc, transcatheter stent placement for recurrent coarc, and a valve-sparing aortic root replacement. I have watched her attend frequent follow-up visits, undergo multiple medical procedures, and unfortunately suffer several severe complications that required emergency surgery. As her sister and POA, I have had to give consent for some of these emergent procedures, and I know how important it is—not only for CHD patients, but also for their loved ones and caregivers—to receive support. She is my heart hero, and I have had the honor of also witnessing her do amazing things: graduate college, pursue her master's degree, have two beautiful children, and lead a very fulfilling and meaningful life. As a Heart to Heart Peer Mentor, I hope to provide support and offer resources to other family members and caregivers. You are not alone!
I was born with coarctation of the aorta and bicuspid aortic valve. When I was nine years old, my heart began to show signs of strain, so I underwent aorta coarctation repair. I recovered well, then before I started my first year of college, I was told that I actually needed lifelong care by an ACHD specialist—and learned so many new things during that first ACHD visit. I went on to study medicine, and eventually worked in the field of pediatric cardiac surgery and everything seemed to come full circle! A couple years ago, I became pregnant with my first child. My beautiful, perfect baby girl was diagnosed with a coarctation of the aorta after birth, and this news completely rocked my world. She had surgery at one month old, which was the hardest thing I've ever had to endure. We are all thriving now, but I continue to learn that CHD is not just something you "go through." It is a perpetual, lived experience with new challenges, joys, innovations and relationships at every step of the way. I want to be a Peer Mentor to nurture and support CHD patients and moms that are going through the vast CHD experiences that I have gone through as a patient, medical provider, and mommy to the strongest heart warrior I know.
I was born with partial AV canal and had two open heart surgeries as a child. At the age of 10, my mitral valve was replaced with a mechanical one and I have been taking Coumadin daily since then. My heart defect led me to become a pediatric cardiac nurse. Through my career, I have traveled all over the world to provide pediatric cardiac care and education in developing countries. I also volunteer with Camp Del Corazon, a nonprofit that provides year-round opportunities for children and young adults with heart disease. My father diagnosed with CHD at the age of 57, and unfortunately passed away from complications related to his CHD surgery. As a Peer Mentor, I’m looking forward to providing support and education to other adults with CHD. I believe education and advocacy are vital components to thriving with CHD!
I was born a blue baby with transposition of the great vessels that required surgery at 36 hours old. Then at age six, I had the Mustard procedure. From that point on I lived a fairly healthy, active life with few limitations. I went to college, got married and had two beautiful girls. I was followed by a pediatric cardiologist until I turned 19. From there I was transferred to an adult cardiologist and continued my care with her; at age 50 my heart began to fail and was then referred to an ACHD doctor. Although I received excellent care from him, it was decided I’d need a transplant. In November 2018 at the age of 55, I received a heart. My condition has now changed as I’m no longer a CHD patient, but a transplant patient. I know the challenges of living with CHD and the challenges of being a transplant patient. Both conditions are unique. I have been very blessed to have received this gift. Since my transplant I have gained two sons-in-law and two grandchildren!
I was born with tetralogy of Fallot and had my first surgery in 1956, a Blalock-Taussig shunt. I had a complete TOF repair in 1960 and was “cured.” I visited my pediatric cardiologist a few times over the next 15 years and then had no contact with any cardiologist until around age 45, when I needed an examination for life insurance purposes. Over the next 10 years, my cardiologist thought it would be a good idea to perform a stress test and carry a Holter monitor every couple of years. An arrhythmia was observed and an ICD was installed at the age of 55. My cardiologist recommended that I transfer to an ACHD clinician—he recognized the need for a more specialized care due to my medical history. Diagnostic tests were performed and I will eventually need a pulmonary valve replacement. I am thankful to ACHA for all of their efforts in so many ways—education, advocacy, training, patient and clinician assistance, and so much more. Becoming an ACHA Peer Mentor is an honor. I want to get more involved with helping others.
I was born in 1970 with a loosely diagnosed “heart murmur.” I dutifully attended cardiologist checkups in New York City as a child, never asking any questions. It wasn’t until I was 29, an avid runner living in Los Angeles, that my symptoms became more acute. I had not been to a cardiologist in more than 10 years—lost in the transition to adulthood. After a series of mishaps, tears and one very lucky referral I found my way to a center specializing in ACHD. I went from having a closet heart condition to being a patient overnight. Surgery was scheduled to remove a subaortic membrane previously undetected in my left ventricle and repair my damaged aortic valve. I took a crash course in clinical vocabulary, insurance, disability, surgery prep and recovery. I have since married, have two wonderful children, completed marathons, learned to surf and have a new sense of purpose. There may be another surgery in my future, but this time I will be prepared. Through the Peer Support Program, I hope to make sure others are not lost in the transition, as well as help with specific questions or simply listen and understand.
Even though I have had many struggles with my condition, corrected transposition of the great vessels, I can also say I have been able to live an active and productive life in spite of the challenges. I was diagnosed at 9 years old. When I was 14, I was hospitalized for six weeks, with a diagnosis of bacterial endocarditis. At that time, my mother forgot the necessity of requesting antibiotics before dental procedures. Since my mid-20s, I have received continuous care from a major CHD medical center, and yes, I had to travel from Alaska to get there. I was able to receive specialized diagnostic testing and treatments in both pediatric and adult congenital heart clinics. I was 26 years old when I had my first open heart surgery to replace a tricuspid valve. At 30 years old, I received my first dual chamber pacemaker, at 46 I received my first ICD, and at 50 years old I had my second OHS valve replacement and a partial Maze procedure to treat ventricular tachycardia. I am now 66 years old, and married.
I have always been drawn to serving in my community in various ways. Now, I am a retired schoolteacher, and a mother of one healthy adult child. I feel it is a great privilege to serve as a Heart to Heart Peer Mentor. My hope is that I can help others navigate challenges and overwhelming aspects of living with CHD, to encourage, support, and serve other families. ACHA is such a great organization that provides resources and support to those with CHD.
I was born with anomalous left coronary artery from the pulmonary artery (ALCAPA) and diagnosed at six weeks old after suffering cardiac arrest. I was the first ALCAPA infant in the United States to receive the Takeuchi repair in Jan 1983 at two months old. I underwent a second open heart surgery at the age of two and being 1 in 300,000, I often felt isolated even in the world of congenital heart disease. In 2020 I learned I would be needing a third open heart surgery to replace my pulmonary valve and I sought support through the Heart to Heart Peer Support program. My experience during the program inspired me to become a mentor to offer support for others, especially those living with rare forms of CHD.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.