At my birth, one of the nurses told my mom I wasn’t going to live. I had something “wrong” with my heart, but none of the doctors at the time knew what. Well, at 59 years old, I guess I proved that nurse wrong!
I was 19 when I was eventually diagnosed with the rare congenital heart defect - Ebstein’s Anomaly. I felt truly alone with this disease, not knowing any person my age with any heart problem. I felt alone and scared.
Thankfully, I started seeing an adult congenital cardiologist at a hospital in Massachusetts. I realized then how unique my heart was, which made me feel more alone with my condition. At every checkup, at least three interns would come in to listen to my heart. I should have charged them!
Since I felt asymptomatic, I really didn’t think much of my condition. Career, marriage, children got in the way and I fell away from my annual congenital cardiologist appointment. We had moved to upstate New York, so the annual trip to Boston was just too much to plan. Plus, I was seeing a local cardiologist and everything seemed fine. Or so I thought.
Around 1995 my cardiologist noted that I was getting older (no kidding), and that I probably should be seen by an adult congenital cardiologist. He recommended right where I had started in Massachusetts!
So, from that point on, I diligently made every annual appointment with my new adult congenital cardiologist. At one point, she mentioned that I might need surgery “down the road.” I hoped the road was long.
At my 2014 appointment, my exit came up—I would need surgery within the next two years. I set May 21, 2015 as the date, figuring I would be home by Memorial Day. I did not want to hold it off until 2016 since I wanted to be dance floor ready for my son’s May 2016 wedding!
I would not have gotten through my surgery and recovery without the support of the Adult Congenital Heart Association (ACHA). This was my first open heart surgery and I was petrified. I had no idea what to expect. Sure, I read many books on the subject about preparing for surgery and recovery, but I didn’t know how it would relate to me.
In particular, two ACHA Webinars were extremely helpful. The first one - “What Adults Living with Ebstein’s Anomaly Need to Know” - helped me better understand my condition and available treatment options. I felt I had the tools to have a meaningful discussion with my congenital cardiologist and surgeon. The second one - “Coping with Life’s Challenges and Changes”- helped develop an arsenal of coping strategies to deal with pre-surgery and post-surgery stress. I worked on changing what was in my control—positive thoughts, healthful eating, and exercise.
What I found most valuable was knowing, through ACHA, that there were others like me who had survived not only one, but multiple surgeries. And they were now thriving. The support of my fellow ACHA Heart to Heart Ambassadors was overwhelming. They listened to and alleviated my fears. I was really stressed out about waking up with all the tubes and wires. I was concerned how painful it might be when the breathing tube and other tubes were removed. Their words of wisdom truly calmed me. After all, they had been through it before and if they said not to worry, I wouldn’t.
My recovery was much longer than I expected. I returned home the Monday before Fourth of July weekend! I had a walker and was on oxygen. Thank goodness for the AHCA and the ACHA Ambassadors —I received support and encouragement during this trying time. I no longer felt alone.
Truly, an organization is only as good as its staff, volunteers and members. I am grateful ACHA was there for me in my time of need. I am honored to serve as a Heart-to-Heart Ambassador and help other adults living with congenital heart disease.
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