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I was born with tetralogy of Fallot in 1947. I've had four open heart surgeries so far: a Blalock-Taussig shunt in 1958, a Waterston shunt in 1967, the total repair in 1980 and a pulmonary valve replacement (PVR) in 2005. I consider myself fortunate to have survived as long as I have; after all, I'm in my 70s! I needed help in making decisions before my PVR surgery and members of ACHA helped me immensely. I just want to return the favor and give back to the CHD community. I know I didn't have any contact with other CHD patients my entire life until just before my PVR surgery when I was introduced to ACHA by my medical providers. It's a great organization and I want to add what I can to it.
While living an active life into my 40s, I was diagnosed with a thoracic aortic aneurysm and bicuspid aortic valve that needed to be replaced with open heart surgery. Finding the aortic aneurysm saved my life. Surviving surgery changed my life. We lost my brother to aortic valve complications 15 years after his aortic valve replacement. So, I am passionate about increasing awareness for all congenital heart conditions. Awareness, information and knowledge is key. I’m a father of three and a husband of over 20 years. I’ve worked for many years in product marketing and sales of precise positioning and measurement solutions that improve infrastructure. I enjoy everything there is about northern California, from skiing to fishing, biking, running, and good red wine. I look forward to connecting with others who face adult congenital heart disease challenges.
I am a survivor of a major heart defect known as congenitally corrected transposition of the great arteries (CCTGA) along with a ventricular septal defect and pulmonary stenosis. In addition to undergoing numerous cardiac events and procedures throughout my life, I had my first open heart surgery at 19 years old and a second at 44. I graduated from Boston University with a concentration in finance and am now a successful community development financier for a major bank in New York City. I have drawn inspiration from my life to author the Harry’s Heart children’s illustrated book series, which reveals my experience dealing with a heart condition since early childhood. I tell my story through the life of Harry, offering an empathetic and inspirational voice to those faced with adversity. I maintain a fierce determination and positive attitude to conquer all of the difficulties I encounter. Residing with my wife and two children in Westchester County, New York, I enjoy karate (I hold a second-degree black belt), golf and drumming.
While I do not have a CHD, I am the older sibling of a CHD patient, Colleen, who has multiple congenital heart defects. To name a few, she has dextrocardia, double outlet right ventricle, right atrial isomerism with heterotaxy syndrome, transposition of the great arteries, complete atrioventricular septal defect, as well as a single ventricle. Growing up with a sibling with such a serious condition affects the whole family in ways that are not immediately obvious and makes for a new understanding of normal. I feel I grew up a little faster and I felt a calling to the medical profession at a very young age. I wanted to make an impact on patients and families like my sister’s doctors, nurses, medical assistants, and others did on our family. That is why today, I am a nurse. I feel that I have a unique perspective on what patients and families are going through as I continue to be on both ends. As an ACHA Peer Mentor, I will help provide guidance, education, and empathy for patients and families and help them embrace their unexpected and ever-changing path.
I was diagnosed at 4 months old with a ventricular septal defect, transposition of the great arteries, and double outlet right ventricle. Shortly thereafter, I had my first surgery to band my pulmonary artery. My cardiologist wasn't optimistic that I could survive my CHD to adulthood. I lived almost 15 years cyanotic and dependent on medication. My second surgery allowed for me live a somewhat "normal life" and then in my 30s I found myself needing open heart surgery once again. For the first time, I dealt with my CHD as an adult. It was uncharted territory, yet it brought back all my fears from childhood. It was an experience that made me see life completely differently. I am grateful to ACHA for all the support, education and empowerment they provided me at one of the most terrifying times of my life. It's important for me to encourage those who are facing the same situation or health concerns. I'm extremely blessed and fortunate to be doing great after my third surgery. It is my wish to inspire those affected by CHD and to be a strong voice for ACHA.
I was born with six complex congenital heart defects and underwent three open heart surgeries before I turned two years old. As a single ventricle Fontan, I strive to live my life to the fullest despite the challenges I may face daily due to my complex anatomy. I had to stop playing sports as a teenager, but I quickly fell in love with theater and music instead. Music is still very important to me today and really does help me during difficult times. I graduated from college in May 2018 and I now work as a cardiac nurse. I’m determined to continue living life to the fullest despite my complications, and I never allow my heart condition define who I am. I’m happy to serve as a Peer Mentor, as I truly enjoy empowering others to be their own advocate when they need it the most.
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 Tetralogy of Fallot. In 1959, I had what was at that time an experimental surgery to correct my defect. The doctors told my parents that my surgery had been successful, so I grew up with the common misconception that my childhood surgery had “fixed” my heart. For almost 30 years I had no problems and thus received virtually no cardiac care. Then in 2004, I started having problems that ultimately led me to an ACHD clinic for the first time. I was devastated and shocked when the doctor told me that not only was my heart not “fixed,” but that my problems were a late result of my original surgery and I needed to have a reoperation. For me, being a Peer Mentor means that I can offer the peer support, information and empowerment to others that I think I could have benefited from back in 2004.
I was born in 1965 with tricuspid atresia. I've had three surgeries: a Glenn, a Fontan and revised Fontan. I, like many others, believed that I was fixed after my 1976 Fontan, until I hit a wall and needed to have another surgery to replace the conduit and valve in 1999. This is when I learned that I needed to be going to a recognized CHD clinic, after wasting valuable time being somewhere that claimed they could treat me, when they really couldn't. In between the “speed bumps” of living life with CHD, I have been blessed with a wonderful life with my courageous wife, Karen. I'm a big proponent of taking responsibility for being informed about our own defects, because we're the ones who own them, like it or not, and we have the motivation to follow through with the details where others may not. Since through the years, ACHA has been a big part of my support system, which includes such heavy hitters as God and my family, I appreciate this opportunity to be involved with the Peer Support program and to be able to offer support to others.
I am married to a wonderfully supportive husband and we have a cat. We are active in our church youth group and love working with kids. I was born with Tetralogy of Fallot. When I was six months old I was given a BT shunt, followed by open heart surgery at two and a half. I saw my cardiologist every year for a check-up. Throughout my childhood, teens and early adulthood I was free from medication and played soccer and volleyball regularly. In 2008, I began to experience tachycardia and rhythm issues which led to multiple medications and eventually to numerous hospital visits and then several cardioversions. In June 2016, I had my second open heart surgery to replace my pulmonary valve and a maze procedure to address my rhythm issues. After my surgery I became passionate about helping others navigate through the process of living with CHD. Living with CHD does not define you. It makes you appreciate what is really important in life. I want to be the change and do everything I can to bring awareness and understanding of this disease.