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 1964. I was a premature baby, noted to have a heart murmur very shortly after birth. My condition was a blue baby with congenital heart disease, type unknown. At 10 months old, my complaints were persistent upper respiratory problems. I’ve gone through open heart surgeries at ages 3, 11, and 52. After the open heart surgeries during my childhood, recovery went well, and I was now an 11-year-old, ready to be sent home to be a regular kid. Forty years later I needed open heart surgery again as my repairs had outlived their lifespans. I have since lived a fairly normal life considering the limitations of my heart defects. I have stayed active, have a wife and family, and tried to eat pretty healthy. It’s been a goal to always work hard, take care of my body and share my experiences and understanding of CHD. Since I have experienced open heart surgeries as a child and as an adult, I wanted to offer the stories of my experiences to others who may not know what to expect. I was introduced to ACHA in 2016 after my last OHS here in Maryland. When ACHA presented the opportunity to apply as a Heart to Heart Peer Mentor, I felt like I would be a good fit and wanted to be part of it.
I was born with transposition of the great vessels and underwent the Mustard procedure open heart surgery at age one. After the surgery I stayed relatively healthy and active, with few limitations. The internet provided me the opportunity to connect and meet other ACHDers for the first time in my life. The early chat groups in the 1990s steered me toward the proper regional care when my husband and I wanted to start a family of our own. Finding the proper care was very important to us, especially when we were told that our daughter was merely the 8th child of a TGA patient to be born at our hospital in Chicago. I had a son several years later and I followed ACHA from the sidelines as I raised my children. I am grateful for the advice and support I received in the early founding of ACHA. The Peer Mentor role allows me to pay it forward.
I was born with a coarctation of the aorta in 1958. Within days I suffered from congestive heart failure. The prognosis was so poor that my parents had me baptized immediately. Thanks to a doctor on staff who had experience with CHD, I was treated and survived until I could undergo surgery. I had my first surgery at age 4 and my second at 13. Six years ago I was told that I would need a third surgery—a thought that, honestly, terrified me. I did my research online and learned about the ACHA and met with members of a local group—what a godsend! They gave me the hope and inspiration to move forward with confidence, hope that could only have come from someone who shared the common the experience of growing up with CHD. Today, I lead an active life. I hike, work, travel—even my golf game is improving! I am excited about being a Peer Mentor because it will allow me to provide the same kind of hope, support and optimism that I received from my friends at ACHA when I needed it most.
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 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 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!
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 with pulmonary atresia. Referred to as a “blue baby,” several doctors advised my parents to take me home and make me comfortable for my remaining days. However, thanks to my parents’ perseverance and a bit of being in the right place at the right time, we found our way to Mayo Clinic. Cut to more than 40 years later with eight open heart surgeries since 1972 and most recently, a heart transplant in 2014, and I am so thankful and excited to be a H2H Peer Mentor! Finding ACHA and meeting others with a CHD who share the same experiences and understand what it means to be living with CHD is priceless. It was important for me to get involved and hopefully be a positive example of living with CHD. As a Peer Mentor, I am so fortunate to be able to provide support, share the highs and the lows, and educate others who have CHD. I'm thrilled to have the opportunity to be a part of this remarkable program and organization and hope to inspire and support other adults with CHD.
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.
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For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.