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I was born with Tetralogy of Fallot with an absent left pulmonary artery. My first open heart surgery was a Potts-Smith shunt at age two months and “corrective” surgery right before my 12th birthday. My (original) pulmonary valve was replaced when I was 40. I have lived a pretty normal life while participating in various activities, working full-time and giving birth to two children who are now in their mid-late 20s. Attending the most recent ACHA National Conference reminded me how important ACHA is to CHD patients from meeting people “just like me” to learning more about the lifelong care needed for CHD patients. It’s heart wrenching to know that less than 10% of CHDers are getting appropriate care. As an older ACHA Peer Mentor, I’d like to change that and use my experiences to provide hope and encouragement to CHD patients and their parents.
In 2008, I was diagnosed with coarctation of the aorta and a bicuspid aortic valve after three years of improper diagnoses. Within six months, I had a repair for the coarctation. I was 33 years old and in the middle of graduate school. Despite the shock and anger I felt, I knew that there was only one way forward—to keep taking care of myself. I hike, I do yoga, and I cook and bake healthy things! Even with all the different diagnoses and symptoms among CHD patients and their support teams, there are several things that we all need: ongoing care, emotional support and a healthy lifestyle.
I was born in 1980 with tetralogy of Fallot. In the fall of 1983, I had my corrective surgery. I also had the mitral valve widened in 1992 by a valvuloplasty. I grew up not knowing anyone with a heart condition, much less my heart condition. I was told by my mother from a young age to not let my condition stop me from having a normal life. She insisted I see a cardiologist yearly and I still do! In 2008, my CHD specialized cardiologist, whom I found on the ACHA Clinic Directory, said I would need my pulmonary valve replaced in the future and that scared me. I sought out support and found ACHA! I want to help others to not feel alone and to have the support I never got growing up.
I was born with tetralogy of Fallot and had my first surgery at the age of eight months. Like many adults with CHD, I thought I had been fixed and was lost to cardiology care as an adolescent. For more than a decade, I lived a normal and active life, never really thinking of myself as a heart patient. Following a bicycling accident in August 2011, I was suddenly reminded that I am not fixed. Later that year, I got a transcatheter stent for a severely narrowed artery; in January 2014, I had my pulmonary valve replaced. I decided to become a Peer Mentor so that I could help other adults with CHD and their family members navigate some of the more challenging and overwhelming aspects of life with congenital heart disease.
I was born with tricuspid and pulmonary atresia and underwent the Fontan procedure. I had a total of five open heart surgeries by the age of four; the first surgeries when I was four hours old. I began studying medical anthropology to understand and examine the treatment of people in a non-clinical setting, especially those with invisible disabilities. My personal experience with CHD shaped my research, and I began to focus on people with CHD and how to share their unique stories and experiences with people and raise awareness of the prevalence of CHD. I became a Heart to Heart Peer Mentor to share my knowledge, experience, and research with people within the CHD community who may benefit from it. I hope to be able to help grow and connect the CHD community and provide support and resources to those who need it.