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I was labeled a “blue baby” when born and later diagnosed with tetralogy of Fallot. I had a surgical repair done in 1966 at the age of 8. At that time, I was told that my heart was “fixed” and the only restriction I ever had as a child was to stop and rest when I got tired from physical activity. I thought I was totally fine and went on to graduate from high school, college, work, get married, and have two heart healthy children, one grandchild, and another one on the way!. I was under the care of a various cardiologists during all this time. However, in 2000 I started having noticeable arrhythmias. After an electrophysiology study and ablation, I had a pacemaker/ICD implanted. Shortly after that, I was told I needed to have my pulmonary valve replaced, resulting in my second open heart surgery in 2001. About this time, I found the ACHA website and connected with others who could relate to what I was going through. I am so excited to be a part of the Peer Mentor program and look forward to providing support and comfort to others dealing with CHD issues.
I was born with tetralogy of Fallot and I’ve had three surgeries, most recently a valve replacement in 2011. Several months after my valve replacement, soon after moving to a new city away from my family, I was hospitalized with an infection in my heart. While I was recovering, I learned about ACHA and decided to get involved. I chose to become a Peer Mentor so I could be a voice of support and encouragement for people who are going through what I went through. I grew up on Long Island and worked on political campaigns and issue advocacy campaigns in northeast. I currently attend law school in New York City.
I live in Westerville, Ohio with my wife Theresa, where we have two grown daughters, Ashley and Rachel, living nearby. I am currently a strategic program manager for a specialty chemical manufacturer. Born in 1961, my CHD is a single ventricle and I have had three open heart surgeries including a cardiac banding (1962), Blalock-Taussig shunt (1977) and a modified Fontan procedure (1988). I developed numerous atrial arrhythmias throughout the 1990s, culminating in a successful ablation procedure for atrial flutter in 2000. I feel blessed to be thriving, enjoying a fulfilling life and am eager to give back to the CHD community through active participation in the Heart To Heart Peer Support Program.
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 corrected transposition of the great arteries, dextrocardia, numerous ventricular and atrial septal defects, and subpulmonic stenosis. I had my first heart surgery at age 11. After many complications and many weeks in the hospital, I went home with a “fixed” heart. My family and I misunderstood that the surgery was a “cure.” I was unaware that I would require future re-operations and that as I grew older I would face other types of problems. At age 27, I had my second heart surgery. I know now that I will require care by a physician specializing in adults with congenital heart disease for the rest of my life. I’m excited to be a Heart to Heart Peer Mentor so that I can help other families and adults understand that ongoing cardiac care is necessary for anyone born with congenital heart disease.
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 diagnosed with aortic stenosis due to a bicuspid aortic valve at age of 4. I always knew from very little that one day I would need a valve replacement. I was born in Brazil and came to the U.S. later as an adult due to my career as an engineer. I had my valve replacement in 2017, first attempted through a mini thoracotomy incision and a bioprosthetic valve placed, but when coming off bypass I went into ventricular tachycardia. This forced doctors to convert to a median sternotomy and a mechanical valve was placed. My combined “double” open heart surgery took about 13 hours and I had to overcome lots of challenges throughout my recovery process. After full recovery, I am very thankful and have a great positive perspective of life thanks to my heart condition. The reason why I decided to become a Peer Mentor is to reach out to people and not only share my story but ultimately listen and support those who need our help to overcome their heart-related challenges.
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.