If you think you might benefit by being matched with a Peer Mentor, please click here for a support request application.
I was born with multiple VSDs and a bicuspid aortic valve. I had two surgeries by the age of three. Thanks to my family and my medical team, I only have happy memories of that time and am proud of my scars. I see my CHD as a superpower. It gave me tenacity, determination, and perseverance from the start of my life. Transitioning from pediatrics to adult CHD care was a challenge as I did not know anyone like me. I am incredibly grateful to have found a medical team and resources like ACHA to support me in taking care of my CHD throughout my adult life. I am excited to be a part of the ACHA Peer Mentor Program and am looking forward to offering support to those in the ACHA community.
My introduction to ACHA began when my 29-year-old seemingly healthy, athletic son was running in his third marathon. At mile 9, he went into sudden cardiac arrest. He left the local hospital undiagnosed and in a life vest. It took months to get a proper diagnosis and determine the next steps. Unbeknownst to any of us, he was born with a CHD, anomalous origin of the right coronary artery). He had open heart surgery almost six months from the day of the marathon. CHD isn’t only found in young children; it can manifest at any time. When my son was trying to navigate an overwhelming and difficult process, I contacted ACHA, who put me in touch with a Peer Mentor. Although unfamiliar with my son’s specific CHD, she was kind and reassuring; she listened. I want to pay it forward and be a support for someone else who is going through a tough time.
When I was born, surgery was not performed on babies like me with Ebstein’s anomaly and a large atrial septal defect. Growing up, I wasn't able to do most things other children could do. I had my first repair when I was 28. Since then I've had three more repairs, two valve replacements, and pacemaker implants. I am in third degree heart block and pacemaker dependant. Since my last repair I have felt the best I have in my life. I am able to do things I have never been able to do before, and that is my motivation. Within the next year, my goal is to run a 5K without stopping or walking. I know what it is like to go from a wheelchair to running, swimming, and biking. I became a Peer Mentor because I want to help fellow patients through all of the challenges of having a CHD and live a rich, full life.
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 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 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 transposition of the great arteries, which was corrected with a Mustard procedure when I was six months old. For the rest of my childhood and into early adolescence, I lived a normal life and just had to take preventive medicine. In my later adolescence, I experienced my first tachycardia, which then led me to getting my first pacemaker in 2002. After that, I was in and out of the hospital with tachycardias. I received an ICD pacemaker In 2007 and several months later, I was inappropriately shocked multiple times. After recovering, I have lived a fruitful and full life with my CHD. I am now married and live with a very supportive wife who is always there for me and our beautiful dog named Willow. I decided to become an ACHA Peer Mentor because I want to make sure people with CHD do not feel alone. I want to remind others living with CHD that this doesn’t define who you are or what type of person you can become. The ability to live a full, healthy, fulfilling life is possible no matter what your CHD condition.
My first-born and only daughter, Ruth, was born with complex congenital heart disease, including single ventricle anatomy requiring Fontan palliation. We spent many weeks over her childhood and early adolescence at the Children’s Hospital of Philadelphia; during that time I experienced the deep need for support among the families battling CHD along with their children, and had opportunities to share encouragement with those earlier on in this journey. Fast forward to Ruth successfully navigating the transition to adult congenital heart care, and even being supported by her medical team to study abroad during college, stretching me as a parent to let go more and focus on supporting her dreams. She has been able to thrive, engaged in meaningful work and great travel adventures. It was in 2008 that she discovered ACHA, which opened wonderful avenues for support, connections and resources for her, and also introduced opportunities for us to be involved as a family. Recalling those early experiences in walking together with other CHD families, being able to serve now as a Peer Mentor is a great honor. I desire to offer hope, support and resources to others who are seeking to empower their loved one to live to the fullest even with their health challenges, knowing that you’re not alone.
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.
Find out more
For additional information on the Heart to Heart Peer Support Program, please email info@achaheart.org.