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 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 Peer Support Program for support. 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 (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 Peer Support 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 a Peer Mentor!
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 Peer Mentor 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 a Peer Mentor and look forward to meeting and supporting others on this livelong journey!
I was born in 1956 with a large ventricular septal defect, pulmonary stenosis, L-TGA and was a “blue baby.” My first surgery was in 1960; I’ve been told I am one of the oldest (native) Michiganders with severe complex congenital heart disease. After that, I was able to carry on a fairly “normal” life including giving birth to a daughter. I also have five grandchildren. In 2009, I had sudden cardiac arrest due to v-fib, and after a month on life support, lived to tell this tale. My next step was another heart surgery with a shunt and an ICD implant. In addition, I suffered with a bout of CHF and have had several defibrillator surgeries. I have always been a proponent for CHD awareness, so when I learned about the Peer Mentor program, to possibly help more people, I decided to take that step. I am excited to lend hope, inspiration and encouragement to those who may benefit. I also would like to help empower individuals to be an advocate for their own care and to provide resources on how to live a more fulfilled life with CHD.
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 learned I needed another open heart surgery. With such drastic and unexpected news, the way I viewed myself as an individual and my future changed from a healthy 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 a decade ago! The friends I have made through various opportunities with ACHA helped me learn to view my heart defect as a small part of my life rather than the thing that defines it. Being a Peer Mentor provides me with the opportunity to provide support for others so that they are not alone either. As I embark on my new life as a wife and mom with a CHD, I am even more grateful for ACHA and the CHD community.
I was born blue. My mom was told I had some heart “problem” and would probably not survive. When I was 18, my heart defect was diagnosed as Ebstein’s anomaly, a malformation of the tricuspid valve. I had my first open heart surgery in 2015 at age 57. Recovery was a long, slow process and I learned to live one day at a time and to celebrate small successes along the way. I strive to maintain a lifestyle as active as possible by participating in 5K walks, indoor triathlons, yoga, and swimming. One of my favorite activities is walking our dog Kovu in the beautiful Pine Bush Preserve. I’ve learned to thrive, not just survive, with Ebstein’s. ACHA has enabled me to not feel alone with my disease. I am hoping that as a Peer Mentor I empower, support, and encourage others with congenital heart defects to live their best lives possible.
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 Peer Mentor, I will be able to offer support and provide resources to others as well.
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 Peer Mentor, 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 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 Peer Mentor affords me that opportunity.