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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.
Like many kids of my generation, I was diagnosed with congenital heart disease when my pediatrician heard a murmur and I had difficulties feeding at home. At 6 months of age, I was diagnosed with tetralogy of Fallot and at 9 months, I was surgically repaired in Birmingham, AL by Dr. Alberto Pacifico. To this date, I have been blessed to have only had this one surgical procedure. I am not naive to think that this will always be the case and recognize the importance of advocacy for CHD and for our community. The H2H Peer Support Program is a beautiful picture of advocacy and community and it is a great honor to be a part of it. I view CHD as a diagnosis and not my whole identity and would love to walk with other CHD patients in viewing themselves as such.
My boyfriend Dan was born with tricuspid atresia. We met when we were teenagers, and he told me about his heart condition three days into knowing each other. I thought of it as just another thing that made Dan who he was, not something that defined him. Dan was a writer, a sensitive soul, a guy who graduated college and then drove 3,000 miles across the country in a stick shift. While I knew there was the possibility that he could die, it wasn't something that we thought about every day. So when Dan died, I was completely shocked. I dove straight into my grief. Feeling and working through those difficult emotions was the best thing for me. I’m now in a place where I know I can help others. I wasn’t born with CHD, but it became an important part of my life. I am so proud to be an ACHA H2H Peer Mentor.
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.
I was diagnosed with tetralogy of Fallot after my first birthday. I had the Blalock-Thomas-Taussig shunt operation in 1960 and open heart surgery in 1963. Despite the uncertainty of my health in those early years, I have had a deep and meaningful life — as a mother of two adult daughters, wife, friend, business owner, writer, singer, bicyclist, swimmer, cook and baker. With an eye on health and well-being, I love to make tasty, nutritious, and visually appealing foods. Most recently I have been examining sodium levels in foods and developing modified recipes that provide flavorful morsels while lowering the overall consumption of sodium. Life is full of challenges and the responsibilities of care providers are many. As an ACHA Peer Mentor, I look forward to offering kindness and compassion to those searching for understanding.
While still in utero, doctors discovered that something was severely wrong with my heart. Once I was born, I was officially diagnosed with Shone’s complex as well as multiple holes in my heart. I was operated on at three days old and again at three years old, as I had finally grown big enough to have full open heart surgery. By the grace of God, I have not had any surgeries since then and now live a full life as a college student in northern Idaho. While I am met with with minor physical restrictions, my heart condition has not hindered me from living an adventurous and fulfilling life. I look forward to connecting with fellow heart patients and encouraging them to live joyfully within the unique circumstances they’ve been placed.
My defect is tetralogy of Fallot, but I am not the “typical case.” I use that term loosely. At 10 months during one of my repairs I had a myocardial infarction (heart attack) on the table. Because of that, I was always under cardiac care. I had my first implantable cardioverter-defibrillator (ICD) at the age of 19 and at 27 got upgraded to a cardiac resynchronization therapy device (CRT-D) as a result of congestive heart failure because of endocarditis. In the middle of all that, I found out that I contracted hepatitis C from a blood transfusion during one of my first surgeries before testing blood became a standard. Even though I have had many ups and down, I live life to the fullest and am encouraged to help others. I learned so much about taking charge of my heart health and hope to help other do the same.
A smiley optimist since a very young age, I am a lover of life, animals, adventures, and my husband Tom. Although I have a backwards heart, my capacity for helping others is what gets me up in the morning. At 5 months old, I had a ventricular septal defect repair, which closed the hole in my tiny heart. At 2 years old, I had another open heart surgery, and woke up with a new shiny carbon mitral St. Jude valve. At 15 years old, that needed to be replaced with a bigger valve. I currently have a biventricular pacemaker (my third device so far). The road on my heart journey has forked down a path of transition: From dependent pediatric care to independent adult congenital clinic care. Taking my care into my own hands, while trying to live in different states and countries, has been an exciting and interesting adventure that I imagine a lot of CHDers are going through. I am here for guidance, empowerment and support to others who have experienced life with a unique heart.
I was born with tetralogy of Fallot and had my first surgery at UCSF in 1975, when I was eight. As with many ACHD patients, I thought I was “fixed” after my first surgery. I had no subsequent problems; in fact, I was extremely active. Also, like many ACHD patients, I stopped going to see a cardiologist after I was about 21. I had no problems at all until I was 42, when I had to check myself into the ER due to severe shortness of breath and arrhythmia problems. In April of 2009, I had corrective ToF surgery, a Maze procedure, and my pulmonary artery replaced. Three months later I had an automatic implantable cardioverter defibrillator implanted, which is also monitored every three months. Luckily, I have basically no physical limitations and have returned to virtually all of the physical activities that I was doing prior to my second surgery. As with every ACHD patient, I suffer the ups and downs of dealing with my disability, and I’ve had all of the similar experiences of dealing with insurance companies, hospitals, ERs, pediatric ICUs, and pages upon pages of forms.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.