I was unexpectedly diagnosed with a hole in my heart as an adult, and I had no idea where to start to find information. I stumbled upon the Adult Congenital Heart Association, and they were helpful from the very first time I reached out. The organization (and Paula in particular) helped to connect me to the right doctors in my area, and the forum allowed me to voice my concerns and fears of being a first-time heart patient and get helpful feedback from long-time heart warriors. I am indebted to the wealth of information that the ACHA was able to provide me at a time when I truly needed it.
Finding out about the ACHA has been the best part of a rather unexpected journey for me. After having had successful open heart surgery when I was 10, I was surprised to learn of the need for a 2nd surgery 41 years later (I'm 51). Finding myself a "heart patient" again after so many years could have been a frightening experience; however, the connection and resources provided by ACHA did so much to mitigate that possibility. Within a few weeks, I was introduced to my ACHA Ambassador who was a wonderful sounding board for many of the concerns I had. Beyond that, the organization provides a wide ranging library of resources, webinars and information that can answer all your questions. Perhaps most importantly, for many old/new heart patients, the organization provides you with a community of individuals that provide support, encouragement and inspiration. In short, they rock!
The Adult Congenital Heart Association—Helping Adults with Congenital Heart Disease Thrive, Not Just Survive
“She’ll never live.” These were the first words a new mother heard from the attending nurse when her child was born. The baby was blue, weighed less than four pounds, and had some type of serious heart “problem.” That child was me.
As a child, I never really understood exactly what condition I had or its severity. My pediatrician only noted that I had a heart murmur. In hindsight, I can appreciate that in the late 1950s, medical science and diagnostic tools weren't where they are today, making an accurate and complete diagnosis difficult. I only knew that I got tired easily during gym class, couldn’t run as fast as everyone else, and had trouble keeping off weight.
Not knowing the severity of my condition and any limitations it posed, I was determined from an early age to attend the Naval Academy. My dad was a U.S. Naval Academy graduate and was killed serving his country when I was six months old. It was my long-standing goal to honor his memory by attending the Academy and becoming a career officer. Finally, it seemed that my wish would become reality--I was thrilled when I was in the first group of women selected to attend the Academy, pending medical clearance.
It was when I had to undergo the pre-admission comprehensive medical exam that my complete congenital heart issues were made clear. I had Ebstein’s Anomaly, a rare congenital defect. I was denied admittance to the Academy because my heart posed too much of a risk. I was devastated.
This was the first time I had experienced any major limitations or discrimination based on my heart disease. I was angry, and vowed I would do my best to stay as fit and healthy as possible.
I always felt somewhat alone with my disease, having a condition that many doctors didn't even know about. I would go for checkups and more often than not interns would come in to listen to my heart. Then, one day while at work, I was discussing weekend plans with a colleague. I mentioned that I was going to Boston for my annual cardiologist visit. She inquired why I was traveling so far (I worked in New Jersey at the time) and I informed her that I had a rather rare condition called Ebstein's Anomaly. She broke down in tears, and I couldn't understand why. Through her tears, my colleague told me that her baby daughter was just diagnosed with the same condition. She had been told that most children born with Ebstein's do not make it to adulthood. She said knowing that I have this condition gave her hope. Seeing her pain turn to joy planted in me the desire to one day work with women and children with heart disease.
Somehow, somewhere, I found the Adult Congenital Heart Association’s website, www.achaheart.org. In reading through its mission, I immediately felt a connection and knew that I wanted to volunteer with this wonderful organization.
The mission of the Adult Congenital Heart Association (ACHA) is to improve and extend the lives of the millions born with heart defects through education, advocacy and the promotion of research. The ACHA website, print materials, media outreach, educational events and advocacy events allow ACHA to reach out to adults with CHD and advocate for the ACHD community. ACHA offers information directly to patients and families, and provides materials and services through health-professional members. ACHA was founded in 1998 by a group of adult congenital heart defect survivors and their families as a national 501(c)(3) not-for-profit organization.
ACHA is dedicated to promoting excellence in ACHD care. Thanks to medical improvements, the number of adults living with congenital heart disease is now greater than the number of children. It is critical for these adults to receive life-long care with a cardiologist specializing in adult congenital heart disease. Advocating for the availability of such care is a main goal of ACHA.
It has been an honor and privilege to volunteer with this wonderful organization. Through the ACHA Heart-to-Heart Ambassador program, I am able to provide one-on-one peer support and encouragement to those living with congenital heart disease. The Ambassador program not only provides one-time matches but 3 month matches, enabling Ambassadors to help those with longer term concerns, such as preparing for surgery.
One of my most memorable experiences with ACHA was volunteering at the Congenital Heart Walk in Boston, Massachusetts. In spite of the nasty rainy weather, hundreds came out to walk a mile in support of or in memory of those with CHD. Along with raising funds for congenital heart research, these walks provide a communal opportunity for congenital heart “families” to support and encourage each other.
The ACHA has been there for me as well. I had my first open heart surgery—at age 57--6 months ago. The support, encouragement, and advice from fellow ACHAers was a true blessing. With ACHA, I no longer feel alone. With ACHA, I intend to provide support for other adults living with congenital heart disease for a long time, helping them thrive, not just survive.
Review from #MyGivingStory
VITAL to an underserved population, ACHA has been a huge advocate for awareness, sensitivity and compassion. I've benefited from the expertise of ACHA for over 10 years and seen it grow from a great intention to a primary source of information, advocacy and support. Every person involved is more than just an employee or a board member or officer - they genuinely believe in reaching out to the communities on both a local and national level. Medical institutions across the country are expanding their services to adult congenital heart patients because this organization is bringing them together. Medical professionals and patients alike are receiving outstanding support!
ACHA has been a powerful tool in aiding me with research, answers, physicians and others with same defects. I'm an adult with CHD since 1965, this has been my ticket to confidence and education..Thank you for being available and my secruity blanket!!
My daughter was born in 1983 with serious complex heart defects. Today she is 29 years old. This site has helped with transition from pediatric to adult doctors. We have used the directory to find good ACHD doctors.
I'm the mom to a 13 year old girl who has a heart defect. I pray everyday that she will grow into an adult with a CHD. I like to read the blogs & watch the webinars to gain insight on what the future holds for her.
I was told in 1972 that my congenital heart defect had been fixed with surgery and the only future treatment I would need was antibiotics when dental work was done. In 2006 I developed new symptoms that local cardiologists could not figure out. A newspaper article about ACHA led me to expert treatment and complete recovery. This organozation is helping thousands and will change the standard of care for all current and future congenital heart defect patients.
Our late son,Steve Catoe was very much involved with ACHA.The great people in this organization meant so much to him ACHA is managed by great people. We continue to support ACHA in his memory.
I'm an RN, specializing in pediatric cardiac intensive care - and I also am an adult with a congenital heart defect! I found ACHA a few years ago when I was searching for adult congenital heart clinics for myself. Their website offers lots of information for patients and families, as well as medical professionals. Their "health passport" and clinic directory as great resources. I especially enjoy reading the blog, because the stories truly reflect common thoughts & feelings shared by many CHD patients. I often recommend the ACHA website to my own patients and their families!