Meet Our Ambassadors
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I was born with truncus arteriousus. I have had three open heart surgeries and currently have a cardiac resynchronization therapy and defibrillator (CRT-D). I am a research nurse in cardiology. I become an ambassador to help others, because someone once helped me. I know that sometimes it can be a struggle to find someone who understands what you are going through—that is why I became an Ambassador.
I was born with tetralogy of Fallot and had my first surgery at 6 months, a Blalock-Taussig shunt. Shortly thereafter I had two additional surgeries, one at age 2 to repair the congenital defects and replace the pulmonary valve and one at age 4 to repair the repair. I had my most recent valve replacement in 1999. About six weeks later, I was a freshman in college at UC Davis and haven’t slowed down since. I am an avid long distance backpacker and endurance cyclist, with two crazy cats, fish and a husband who lovingly puts up with my “not to be slowed down” attitude. I became an ACHA Ambassador because I want to meet others like me and be able to have the ability to share in cardiac experiences with others and give an empathetic ear when it is needed. I want to encourage others to live life fully and embrace their congenital heart condition and not be ruled by it.
In January 2010, I had surgery to replace my pulmonary valve, a follow-up to surgery I had for tetralogy of Fallot in 1972. While my physicians were terrific and shared excellent information with me, I would have benefited from the emotional support that a fellow ACHD patient could have offered. As a working mother with two young boys, ages 6 and 8, I had so many concerns about my situation and how I would get through it. Fortunately for me, I had a great recovery and when I learned about the Ambassador Program shortly after my surgery, I knew I wanted to get involved. My experience as an Ambassador has been immensely statisfying, as I am now in a position to offer the type of peer support and informational resources I had been seeking myself.
I was born with aortic stenosis and had my first heart procedure when I was 3 ½ years old. Throughout my childhood and teen years I led a pretty “normal” life, just going for annual checkups to my pediatric cardiologist. At the age of 13 I had one more procedure which helped me until the age of 17—when I had my first open heart surgery. As someone who grew up with a congenital heart defect, I always felt somewhat abnormal, but as my life has evolved I have realized how truly special this condition has made me. It has made me into a very kind and caring individual who is extremely strong for others when they may be weak. I became an ambassador so I could help others thrive and succeed with other CHDs.
I was born with a single ventricle. I had a modified Fontan when I was 8 years old, and my childhood was a happy one with slightly overprotective parents. I grew up knowing that I had a “hole in my heart,” but thinking that I had been fixed and there was nothing to worry about. Unfortunately, I found out the hard way that having a heart defect meant having a lifelong challenge, and that there will always be something to worry about. That was when I found out about ACHA, and it was great to meet other people with CHD who had been through such similar experiences! It was nice to know I wasn’t alone—and that is why I am looking forward to being a H2H Ambassador, to help other patients realize they aren’t alone, and that we can share our experiences and give strength, support and friendship to one another.
Other than a few open heart surgeries and having a new pulmonary valve from being born with pulmonary stenosis, I’m just your average 45-year-old husband and father of two beautiful children. Life in general is a gift; I was born with an additional gift, my congenital heart disease. Because of, it I am not weaker, I am stronger. I am not disabled, I am able. I am not a quitter, I am a fighter. Becoming a member of the ACHA was like becoming a member of a second family, a family of several people that have walked in my shoes, a family that we all can relate to physically and medically, a family that stretches throughout the world. I wanted to become an ambassador to have the opportunity to invite others just like us into our family and welcome them with open arms and open hearts—pun intended! I want them to know that life with CHD is no different than any other life.
I was born with a complex congenital heart defect, and although I have had many surgeries and procedures throughout my childhood, I spent most of my life running from the fact that I had a CHD. In 1999 I met my wife and it changed my life. She also had a CHD and I immediately had someone who understood and was behind me 100% in whatever I thought I wanted to achieve—and she was there to tell me it was OK when I couldn’t achieve it. While she was active in ACHA, I was still hiding from my CHD, failing to acknowledge that I was like a lot of ACHA members. When my wife passed away, it was ACHA that came to my rescue. The people I tried to distance myself from were the very ones who helped give me comfort. It was then that I decided to help others with this disease and at the same time honor my wife.
I was born with tetralogy of Fallot in 1954 and in 1966 had corrective surgery. I was doing well until 1969, when I got my first pacemaker. I was small and the pacemaker was large, so it was placed in my abdomen, where it fit. I had it changed in 1972 and again in 1973. In 1980 I got my first dual-chamber rate-responsive unit; I felt better and it was the first time I had a heart rate that changed. I had my device changed several times until 2004 when I got my first ICD. I had that replaced in 2007. In 2010 I got a Bi-V ICD and now I am doing quite well. From the early days in the 1970s, my doctors would ask me to speak to other patients in the hope that seeing such a young person with a pacemaker would help them adjust to the idea for themselves. Since then, I have continued to speak to new patients and families in diverse forums as a patient and in my career as a medical administrator. Now, I am looking forward to meeting new people and sharing my experience as a H2H Ambassador.
Tony is the father of Dr. Anthony R. Cordaro, Jr., one of the original co-founders of ACHA. Tony was involved from the beginning of ACHA as one of the first board members helping the organization through its initial growth phases in securing its 501(c)(3) designation and assisting in the success of its first conference. After taking a leave from an active involvement for a few years, and seeing the phenomenal growth of ACHA, Tony wanted to get back involved as an Ambassador for the organization. Tony says he is humbled at seeing what the organization is today with its exponential growth. Most importantly, he is deeply impressed at how many lives of individuals and families that ACHA has touched and is touching today in both subtle and dramatic ways.
I was born with tetralogy of Fallot and had a full repair done at 9 months old. I fell out of care for 10 years believing I had been fixed. When I was 17 I learned that being born with a CHD required lifelong care. I had two healthy sons who were just four and one when I needed my pulmonary valve replaced in 2012. It was then that I turned to the Heart to Heart Ambassador program for support. I’m currently working as a swim instructor and keeping up with my two busy sons. ACHA is a wonderful organization and this program was an immense help to me. I am honored to have the opportunity to work with them and give back to others.
I was born with tetralogy of Fallot and underwent my first corrective surgery at nine months of age. In 2008, I had my pulmonary valve replaced. I live in upstate New York and work as an attorney and a campaign fundraiser. Growing up, I wished I could meet someone else with a congenital heart defect so that I didn’t feel so isolated. When I underwent my second open heart surgery, I wished I could speak with someone else who had also had the same experience so I could gain their prospective. Imagine my delight when in May 2011 I learned about ACHA and the Heart to Heart program—all my wishes came true! Because I have been in the position of needing someone to talk to, I look forward to giving that support and guidance to other people living with CHD.
I was diagnosed at birth with transposition of the great arteries. I had my first procedure when I was a few hours old to make my heart more suitable for surgery. When I was a week old, I was the seventh infant my surgeon performed the arterial switch on. I grew up restricted from many activities and missed out on a lot of experiences. When I was 23, I discovered ACHA, which instantly connected me to so many great people and gave me the tools I needed to finally transition into an ACHD clinic the following year when I started experiencing symptoms for the first time. I became an ambassador to inspire people to get the care they need and deserve and to make sure everyone with CHD gets connected to this incredible community.
I was born with transposition of the great vessels, pulmonary atresia and ventricular septal defect—just five years after my sister was born with the same defects. It was as if I grew up with my own personal H2H Ambassador. Having someone who shared the same experiences and understood what it meant to be living with CHD was priceless and made me feel “normal”—something I took for granted. I lost my sister in 2002 and it started to hit me that we weren't “fixed” and CHD was always going to be a part of my life. Thankfully, my mom and I discovered ACHA and attended a conference in 2011, which was life-changing. It was so incredible to be in a room with hundreds of people who shared similar life stories. Hearing about all of the hard work ACHA has been doing to improve the lives of patients and families was inspiring. Being a social worker, it felt natural to become an Ambassador and provide support and education to others with CHD. I'm thrilled to have the opportunity to be a part of this remarkable program and organization.
I was born with tetralogy of Fallot (TOF), then had a BT shunt at age 1 and “corrective” surgery at age 5. I was blessed with a very normal and rambunctious childhood, blissfully unaware that I would need more intervention as an adult. But at 24, I collapsed at work, discovering my ventricular tachycardia in the coming months. After weeks in the hospital, I left with a prescription, lots of bruises from four ablations and a new determination to help others in my situation. I was working with very well-meaning, hard-working “regular” cardiologists, but neither of us knew that they were not equipped to help people with CHD. As a last-ditch effort I went to a new institution and literally fell into the right hands. By age 27, I had a new pulmonary valve and the world opened up to me. I used the ambassador program a few years ago while experiencing a new, frightening issue with my heart. I am so eternally grateful to ACHA for doing all they do for adults with CHD, I just had to jump in and help in any way that I can. So here I am—thrilled to be an ambassador!
I do not have a single heart defect; in fact, it’s my heart condition that makes me an effective voice, as I am a dextrocardia, single ventricle, situs inversus, Blalock-Taussig shunt, Fontan procedure baby. I make each day count and try my best to live my life to the fullest. Every now and then when I forget have CHD, my heart reminds me to take it slow and enjoy life. My condition has given me the determination and willpower to get through life and try to make it better for those around me, reassuring them there is a reason I was born with this condition and that perhaps it’s to help others. My decision to become an ACHA Ambassador is based on my own life experience. I want others to know that we are and you are not alone; there are tools that can help manage CHD so you can live a full life.
I am a mother of three with transposition of the great vessels, pulmonary stenosis and ventricular septal defect. Over the years I have had two stents, a Rastelli procedure, my conduit replaced twice surgically and in 2011, received a Melody Valve and two shunts after finding myself in congestive heart failure. I have always had a great medical team close by and know how lucky I am to have quality care available to me. I have been involved with ACHA for some time and I am excited to be an Ambassador and look forward to meeting and supporting others on this livelong journey!
I was born with transposition of the great vessels, which was repaired in 1976 with the Mustard procedure. As a teenager and young adult I was an athlete and after college pursued a lifelong dream to become a professional soccer player. After playing at that level for 12 years it was time to retire because my heart was starting to fail. After going into acute congestive heart failure and receiving my fifth Pacemaker/ICD in 2008, I was listed for heart transplant in October 2010. After waiting 1,039 days I was transplanted in September 2013. One year later, I decided to become an ACHA Ambassador because I needed to give back to the CHD community. I am doing so by focusing my time and effort spreading the word about how we can live and enjoy life as an adult CHD patient. I endured and exceeded all expectations, but the great thing is that I am not the only one to do so! As ACHD patients we have all beat the odds and every day we get up is another day we do so!
I was born 12 weeks early with tetralogy of Fallot with absent pulmonary valve. I had my first repair at 16 months and pulmonary valve placement and replacements at 21 and 24 years old. I also recently had cardiac arrest and subsequently a Melody valve and ICD implanted. Despite all of my issues, I grew up playing every sport and even had the opportunity to play soccer in Europe while in high school. I continue to compete and have in the last two years completed three half marathons. I want to show people that a heart condition does not define you and need not limit you. The ability to work with others and to provide hope to them and their loved ones is something that I have long desired to do and working as a Heart to Heart Ambassador affords me that opportunity.
I am the mother of two daughters, both born with similar heart defects (transposition of the great vessels, ventricular septal defects and pulmonary stenosis). Unfortunately 12 years ago, at the age of 24, my oldest daughter Stacey passed away. My younger daughter Jill continues to thrive and live a wonderful life in spite of her CHD. Jill and I found ACHA in 2011 and it has been life-changing for both of us. We both have learned so much and receive comfort knowing there are so many other people in our situation. I am hoping as a Heart to Heart Ambassador, I will be able to offer support and provide resources to others as well.
I have tetralogy of Fallot with an absent pulmonary valve. After a surgical repair when I was four, I was blessed with an uncomplicated childhood and early adulthood. At age 26, I had open heart surgery. With such a drastic and unexpected turn, the way I viewed myself as an individual and my future changed from a healthy newlywed and grad student with a life full of possibilities and excitement to a sick, heart patient living on borrowed time. I didn’t think I could possibly survive a second open heart surgery. After three months of living in isolation and fear, I learned that surgery was not yet necessary. That was four years ago, and I am now back to viewing my heart defect as a small part of my life rather than the thing that defines it. The friends I have made through various opportunities with ACHA make sure I know that I am not alone every time I go to the cardiologist. They (and my mom!) are what get me through each appointment. Being an Ambassador provides me with the opportunity to provide support for others so that they are not alone either.
I was born with pulmonary atresia with a ventricular septal defect and multiple aortopulmonary collateral arteries. By the age of three I’d had three modified BT shunts, closure of my VSD, and a conduit with pulmonary valve implant. I’ve since had my conduit replaced, two new valves (most recently a Melody valve), and an ICD implant in 2012. While my life has always been a bit of a rollercoaster, I wouldn’t change it for anything because it’s made me who I am. I love crafting, camping, and hanging out with my husband and two crazy cats. I’ve hiked through the Smokies and recently saw the Redwoods. As a Heart to Heart Ambassador I hope to educate others and let them know they’re not alone. I’ve never let my CHD slow me down and I want to encourage others to live life to the fullest as well.
I was born blue. My mom was told I had some heart “problem” and would probably not survive. At 18, my heart defect was diagnosed as Ebstein’s anomaly, a malformation of the tricuspid valve. I had my first open heart surgery recently in May 2015. I have learned during recovery to simply live one day at a time and to celebrate each accomplishment along the way, no matter how small. I strive to maintain a lifestyle as active as possible, and can't wait to be back participating in 5K walks, indoor triathlons and swimming. My goal is to walk an 8K to be held exactly one year from my surgery. I’ve learned to thrive, not just survive, with Ebstein’s. ACHA has enabled me to not feel alone with my disease. I’m hoping that as an Ambassador I can empower, support, and encourage others with congenital heart defects to live their best lives possible.
I was born with pulmonary atresia with ventricular septal defect, and have undergone several surgeries and procedures as a result (Blalock-Taussig shunt, Rastelli procedure, pulmonary stent, radiofrequency ablation, two vascular surgeries, and most recently a Melody valve). As a child, I was always told that my CHD would require ongoing care, and have worked with an amazing team of CHD doctors since infancy. As a teenager, my CHD was something I went to great lengths to hide, as I was terrified of being seen as different. As I got older, I realized my CHD instilled a sense of calm and inner strength in me that I could be proud of, and I never let it set me back. I’ve traveled around the world, practice yoga three times a week, and go on hikes with my dog Charlie. Currently, I work on policy and legislation for a national non-profit organization, am happily married, and have a fantastic group of friends.
I was born in 1958 with tetralogy of Fallot. I have to consider myself fortunate and do not take life for granted. As I always say “I have a congenital heart defect. I live with it, but it’s not my life.” I had my major correction in 1967 when I was 9 and not until 2006 did I have my pulmonary valve replaced. I had a heart healthy son in 1986 whom I lived through vicariously through his athleticism. Since I can remember, I’ve always wanted to give back and be supportive of others who are like me. I never found anyone until 1998 when I met many with all types of heart defects on an online listserv; then, ACHA was formed. I have been very active from the beginning and chose to do so by joining the Ambassador program. It is important to me to help others understand that they are not alone and that there is a resource available to them.
I was born with a single ventricle, which includes: hypoplastic left heart syndrome, mitral valve atresia, double outlet right ventricle, total anomalous venous return, and pulmonic stenosis. Being the only child out of six born with a heart defect, I never felt as though I belonged, but always had a fighting spirit. I have met children and a handful of adults living with CHD, and then the nurse in my cardiologist’s office told me about ACHA. The first time I went to the website I was in complete awe of the amount of us that are out there. I have participated in Congenital Heart Walks, but when I heard of the ambassador program, and I knew this was what I wanted to do. I look forward to getting to know more adults with CHD, and I hope to be a positive addition to Heart to Heart Ambassador program.
“You should not have stayed away so long! You need surgery, and I don’t want you to wait.” These were shocking words from my ACHD cardiologist. Like most adults, I had been living life without properly caring for my congenital heart defect, tetrology of Fallot. I was the lucky one who was the first TOF repair at Emory in Atlanta in 1972 at the age of four. With only a few interventions between four and 40, I figured I was set for life. When my cardiologist told me I needed another surgery, I was stunned. Once again, I was lucky. I was referred to a wonderful surgeon who was able to save my pulmonary valve and repair my right ventricular outflow tract. As I recovered and realized how truly fortunate I am, I decided I needed to help educate everyone about the importance of lifelong care with an adult congenital specialist.
I have tricuspid atresia, atrial septal defect, ventricular septal defect and pulmonary stenosis. I've had the Blalock-Taussig shunt, hemi-Fontan and Fontan procedures. At 16 I had an assignment to write a personal memoir. I remember complaining to my parents about how boring my life was and how my body was covered in ugly scars. My parents responded by offering me plastic surgery to remove all 10 surgical scars. I realized then and there how much self-hate and denial I had about my CHD. My journey to acceptance, knowledge and empowerment began that day. Every day I strive to live life to the fullest, wear my scars with pride and take advantage of the amazing gift of life that I have been granted—I have paraglided the Teton Mountains, sky dived in the beautiful Pacific Northwest, zip-lined down mountains at 50 miles per hour and I play soccer year round. Life with CHD is an amazing and challenging journey. I became an Ambassador so no one has to go through the journey alone.
I was born with patent ductus arteriosus (PDA) and membranous subaortic stenosis. I had my first heart surgery at the age of 18 month to repair the PDA. When I was 21 years old I had my second surgery for aortic valve repair and my third surgery in 2009 for aortic valve replacement. I now have a permanent pacemaker as well. I, like so many others, fell out of the healthcare system when I was 12 years old, and learned the hard way the importance of finding a qualified ACHD cardiologist and being a good patient! Living an active and healthy life is my passion. I am a physician assistant in preventive cardiology as well as cardiac rehabilitation. I think my dual perspective (both as a patient and provider) gives me something valuable I can use to help others through the process.
I became an ambassador in 2010 in support of my husband, Dave, who was born with tricuspid atresia. Dave had multiple surgeries and always had questions! We were referred to ACHA by our doctors in Boston. I left my banking job and became a cardiovascular technician so that I could understand what the doctors were telling me in order to help care for my husband. We moved to Phoenix, where I worked in Cardiac Care and Intensive Care Units, caring for other congenital heart patients. Dave passed away on his 52nd birthday in 2011, but I continue to work in the cardiac surgery division at a university medical center in Tucson, AZ.
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 an ambassador 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 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 65! 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.
I was born with transposition of the great arteries and coarctation of the aorta. I had two major heart surgeries in my first year of life. Growing up I lived a normal childhood, playing both tennis and baseball competitively. At the age of 25 I had a life-threatening cardiac emergency requiring an ICD. Ever since, I have been active with ACHA and now look forward to contributing further as a Heart to Heart Ambassador. I hope to bring encouragement to other congenital heart patients, and emphasize the importance of living life to the fullest. This disease should not define any of us, but merely make us stronger. By Being a Heart to Heart Ambassador, I look forward to helping others with CHD to thrive and face life with a positive outlook.
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 Ambassador, I will help provide guidance, education, and empathy for patients and families and help them embrace their unexpected and ever-changing path.
I was born with a coarctation of the aorta and was diagnosed at 16. I was told I "should" be fine and fell out of care until April 2012. At 36, I was diagnosed with a grapefruit-sized aneurysm in my aortic arch and had my first open heart surgery in May 2012 to repair both issues. I had a frozen elephant trunk graft procedure along with several stents and a left subclavian artery graft placement. After I underwent my OHS I desperately wanted to find others who have experienced what I just went through. My family and friends are all very supportive but it was different to find others who could relate. I consider myself extremely lucky and continue to live an active lifestyle with my husband playing tennis, running, hiking, snowboarding and doing yoga. When I found ACHA I was delighted to know there was this amazing group of CHDers offering education and advocacy to others. I'm grateful to have the opportunity to work alongside ACHA as a Heart to Heart Ambassador.
I am the mother of a 30-year-old son, Jason, who has tetralogy of Fallot. He was born premature (4 pounds, 6 ounces) and initially diagnosed only with a ventricular septal defect. Jason suffered failure to thrive, which continued until 8 months old, when he had a gastrostomy tube inserted for feeding. He ate nothing by mouth; all food was received via the tube until his open heart surgery when he was 3 years old. After the heart surgery, Jason was fine and living a normal life with few restrictions. When he was 26, heart issues began to reappear, and that is when we realized that ACHA was filling a great need. I decided to be an Ambassador so that I could be available to help people in need of finding information, resources and support during a usually very emotional time.
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 dextro-transposition of the great arteries and atrial septal defect. I had my first surgery (the Mustard procedure) in Texas in March 1976. My heart is remaining strong in terms of function but I have had a few rhythm issues that resulted in an AICD in November 2012. About the time I turned 40 I really understood how amazingly blessed I have been and continue to be. I had/have an extremely proactive mother who taught me to advocate for myself, world class physicians and medical care, and a partner who knows as much about my condition as I do. Moreover, I was blessed with two heart healthy sons, who are now living their lives to the fullest at college. I'm so honored to have the opportunity to be part of ACHA and pass on some of the things I've learned through my CHD journey with others.
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 Ambassador 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 an Ambassador 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 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. 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 Ambassador program and look forward to providing support and comfort to others dealing with CHD issues.
I have been to Lobby Day every year since 2007 with my son, Andrew, who is now 27 and has been through seven open heart surgeries. He has single ventricle and transposition of the great vessels. We both work full-time and believe ACHA will improve and extend the lives of people with congenital heart defects. I became an Ambassador to provide support to other parents going through the ups and downs of navigating the medical needs of children and adults with congenital heart defects.
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 an Ambassador 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 was born and diagnosed with tetralogy of Fallot. A Blalock-Taussig shunt procedure was performed prior to my first open heart surgery in 1975. I was monitored by my pediatric CHD specialist until my late teens and then was told to find a new doctor as I was too old to be treated. An adult cardiologist did his best to help me during my 20s and 30s. In late 2010, after seeing my cardiologist for an illness, he mentioned to me that a local university heart center was treating CHD in adults; he connected me with ACHA and told me that I should talk with them. After a heart study we found that my pulmonary valve was failing. My pulmonary valve was replaced at a different ACHD clinic in California in June of 2011. ACHA has been a big help as a resource and knowledge base for my wife and me. I am now proud and honored to help participate in the Heart to Heart Ambassador program to help support others living with CHD.
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 Ambassador program and to be able to offer support to others.
I was born with a ventricular septal defect, tricuspid atresia, and pulmonary stenosis. At six weeks old I had my first open heart surgery, a Pott’s shunt. After 20 years of being “blue,” I had my bidirectional Glenn and six months later my lateral tunnel Fontan. Since then, I have done very well and feel lucky to be here. I am thankful that I found ACHA. I went to the National Conference in 2014 and met many people just like myself! They understood how I felt growing up and now as an adult. The experience made me realize that this was something I really wanted to be involved with. I became a Heart to Heart Ambassador because I want teens and adults with congenital heart defects to know that they are not alone. I want to empower others to stand up for themselves and get the care they need and deserve.
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 an Ambassador 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 congenitally corrected transposition of the great arteries, pulmonary stenosis, dextrocardia, a VSD and an ASD. My first open heart surgery was at age 5, then again at age 12, 20, and 32. I had a pacemaker implanted after my first open heart, and replaced many times since then. I have also had an ablation for atrial flutter. I always focus on living as a person who happens to have a CHD, and not let it steer me away from my goals. I am married and have an amazing 16-year-old daughter. I have been fortunate to know others with CHD since I was a teen, thanks to a local group. Sadly, it fizzled out. When I found ACHA, I knew this was a great opportunity to get involved again. As an Ambassador, I hope to help others with CHD live the fullest life possible!
I am a twenty-five year old living with truncus arteriosus and when I say living I mean, going skydiving, snowboarding, hiking, and truly experiencing life! I was diagnosed with truncus arteriosus when I was around six months old and throughout my experience, I have had many doctor appointments, three open heart surgeries, and tons of support from family and friends. Growing up, I always wanted to know other people who had CHD but struggled to find anyone. For me, the Heart to Heart Ambassador Program is an opportunity for me to share my experiences with others and hopefully provide others with some support and comfort.
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 Ambassador 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 in 1960 with a double inlet single ventricle (left) with pulmonary atresia and chronic cyanosis. I was diagnosed two weeks after birth, because a medical professional in my family noticed how blue my lips and nails were. The diagnoses came with the doctors telling my parents I probably would not live to be one month old. At three months I had my first Blalock–Taussig shunt and at age four, I had another. My final surgery was in 1992, at the age of 32. I am now 51 and doing well. All along the CHD journey, my parents and I knew no one else with CHD. It was difficult not having anyone with which to share information and concerns. That is why this ACHA Ambassador program is important me. No one else should to have to grow up or experience any CHD issues alone. We are all in this together!
I was born with a “normal” heart. I was introduced to the world of adult congenital heart disease when I got married in 1981. My wife Kim is a survivor who has a single ventricle with double inlets. Over the years she has had three heart surgeries. The most difficult part about being the spouse of a survivor is figuring out what health issues to worry about and what health issues are normal. In my day job I work as a human resources professional. I work closely with recruiters, managers and legal staff to understand the complexity of various employment laws and how they affect hiring and retention decisions. My hope is as a Heart to Heart Ambassador, my experiences as the spouse of a survivor and in human resources will allow me to provide information to spouses, as well as familial support to those who struggle with these issues.
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 Ambassador is an honor. I want to get more involved with helping others.
I was born with an ASD and pulmonary stenosis. When I was 18 months old I had open heart surgery to repair the ASD and remove my defective pulmonary valve. I had no restrictions as a child and reveled in showing off my EKG print-outs during show and tell at school. At 23 I had pulmonary valve replacement with a bovine valve that I lovingly named “Ed.” I had always considered myself a “heart baby” and never really thought I would have other health challenges, but in 2013 I suffered from a brain hemorrhage that was ultimately connected to a rare, benign brain tumor. I had the tumor removed via surgery and am happy to report that I am free and clear in the brain department. I love to sing in my chorus and cook for my friends and family. I am originally from Charlotte, N.C., but currently live in the Seattle area with my husband, Thomas, and two cats, Pickle and Barley.
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 Ambassador 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.
I was born without a wall between my atriums. I have had five open heart surgeries—at 9 months, three years and five years to build/repair the wall, and at ages 24 and 36 for a mitral valve replacement and more ASD repair—in addition to three pacemaker surgeries. At age 39 I found out I also have polysplenia (several mini spleens), which is in line with my heart defects. When I was out of high school, I was moved into adult cardiology, where I was cared for until I started doing research for some symptoms I was having. That's when I found the ACHA website and directory, and was able to locate an ACHD clinic in my city. I'm married to a police officer, and we have two dogs and two cats. I'm so excited to be a part of this program and help others in the ACHD community.
My boyfriend Dan was born with tricuspid atresia. We met when we were teenagers, and he told me about his heart condition three days into knowing each other. I thought of it as just another thing that made Dan who he was, not something that defined him. Dan was a writer, a sensitive soul, a guy who graduated college and then drove 3,000 miles across the country in a stick shift. While I knew there was the possibility that he could die, it wasn't something that we thought about every day. So when Dan died, I was completely shocked. I dove straight into my grief. Feeling and working through those difficult emotions was the best thing for me. I’m now in a place where I know I can help others. I wasn’t born with CHD, but it became an important part of my life. I am so proud to be an ACHA H2H Ambassador.
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 40 years later with eight open heart surgeries (first in 1972 and most recently in 2010) under my belt, I am so thankful and excited to be a H2H Ambassador! 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 an Ambassador 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.
My defect is tetralogy of Fallot, but I am not the “typical case.” I use that term loosely. At 10 months during one of my repairs I had a myocardial infarction (heart attack) on the table. Because of that, I was always under cardiac care. I had my first implantable cardioverter-defibrillator (ICD) at the age of 19 and at 27 got upgraded to a cardiac resynchronization therapy device (CRT-D) as a result of congestive heart failure because of endocarditis. In the middle of all that, I found out that I contracted hepatitis C from a blood transfusion during one of my first surgeries before testing blood became a standard. Even though I have had many ups and down, I live life to the fullest and am encouraged to help others. I learned so much about taking charge of my heart health and hope to help other do the same.
I was born with tetralogy of Fallot and had my first surgery at UCSF in 1975, when I was eight. As with many ACHD patients, I thought I was “fixed” after my first surgery. I had no subsequent problems; in fact, I was extremely active. Also, like many ACHD patients, I stopped going to see a cardiologist after I was about 21. I had no problems at all until I was 42, when I had to check myself into the ER due to severe shortness of breath and arrhythmia problems. In April of 2009, I had corrective ToF surgery, a Maze procedure, and my pulmonary artery replaced. Three months later I had an automatic implantable cardioverter defibrillator implanted, which is also monitored every three months. Luckily, I have basically no physical limitations and have returned to virtually all of the physical activities that I was doing prior to my second surgery. As with every ACHD patient, I suffer the ups and downs of dealing with my disability, and I’ve had all of the similar experiences of dealing with insurance companies, hospitals, ERs, pediatric ICUs, and pages upon pages of forms.
I am a 53-year-old living with transposition of the great arteries, ventricular septal defect, atrial septal defect and pulmonary hypertension in a town 10 miles south of Boston. I have never had any type of surgical repair. Because of the wonderful care I have had access to in my life as well as receiving the gift of finding several others with ACHD via an internet chat room several years ago, I have been able to live my life to the fullest. I am a Heart to Heart Ambassador to help those touched by CHD. Whether patient, family member or caregiver, live life as well as possible.
A smiley optimist since a very young age, I am a lover of life, animals, adventures, and my husband Tom. Although I have a backwards heart, my capacity for helping others is what gets me up in the morning. At 5 months old, I had a ventricular septal defect repair, which closed the hole in my tiny heart. At 2 years old, I had another open heart surgery, and woke up with a new shiny carbon mitral St. Jude valve. At 15 years old, that needed to be replaced with a bigger valve. I currently have a biventricular pacemaker (my third device so far). The road on my heart journey has forked down a path of transition: From dependent pediatric care to independent adult congenital clinic care. Taking my care into my own hands, while trying to live in different states and countries, has been an exciting and interesting adventure that I imagine a lot of CHDers are going through. I am here for guidance, empowerment and support to others who have experienced life with a unique heart.
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 with coarctation of the aorta and bicuspid aortic valve, and have had the privilege of having pediatric and adult congenital care throughout my life. It is a lifelong journey living with CHD, and as a heart patient, I find myself among an ever-growing population of surviving and thriving CHD patients. I value ACHA for its focus on education, advocacy and research, as well as the community it fosters—including through the Ambassador program and the multitude of opportunities to connect, build relationships and be active on the local and national level. To me, the Ambassador program is a community of support and a way to educate, advocate, and spread the message: You, too, are not alone!
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 in 1978 with a single ventricle, transposition of the great vessels, cyanosis and other defects. I underwent a modified Fontan procedure in 1982. By 2008, I was in atrial fibrillation. I had a Fontan revision and a Maze procedure in 2009, and three weeks later had a pacemaker implanted. When I heard about the Ambassador program, I immediately wanted to apply. In 30 years, I had never met any other person with a CHD. I wanted to be a part of this to help people see that living with CHD is not always a bad thing. My heart defect has really made me the person I am today, and I want to be able to meet others just like me and relate to each other in ways that I cannot with my family or friends. I believe that each one of us so unique in our way and that we are so blessed. Even though we live every day knowing life is short and precious, it’s that reason we want to give back even more and help as much as we can.
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 an Ambassador 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 Shone’s syndrome (aortic coarctation, bicuspid aortic semilunar valve, insufficient muscles operating my mitral valve). A fall out of bed one night when I was four landed me in the emergency room for a concussion. The doctor asked my mother about my heart condition—her response was, “What heart condition?” A few days later I was being seen at Children’s National Medical Center in Washington, D.C., where I grew up. A month later, I had my coarcted aorta repaired. That was fall 1982 and I have been in cardiac care ever since. By spring 2010, my aortic root had dilated to the point that I needed additional surgery, so I had valve-sparing aortic root replacement, though at some point I may need one or more valves replaced as well. New scars, more stories, better health! I am a spouse, a parent, a daughter, a friend, a statistician, a teacher, an H2H Ambassador and an adult who does what she needs to in order to thrive with CHD.
I was born with pulmonary atresia, ventricular septal defect and tetralogy of Fallot—we were told to go home and pray. When I was 10 years old, our prayers were answered and I had an experimental surgery at the Mayo Clinic to start correcting the defect. I followed this first surgery up with another one at age 11. The next 29 years I lived my life to the fullest. I got a degree in business and in nursing. I became a traveling nurse and traveled all over the United States. I had fun by jumping out of an airplane, flying in a hot air balloon, hiking the Grand Canyon, and traveling the world. This all came to an end when I turned 40 and had to have my third open heart surgery. This included an ablation, extensive surgery and placement of an AICD. By the grace of God I survived. I wanted to become a Heart To Heart Ambassador because I wanted to use my unique experience both as a patient and cardiac nurse to help others going through the same situation.