Born with a congenital heart defect or disease (CHD), I would often joke about having a broken heart. Although my story is an incredible journey of survival (perhaps that's a bit dramatic), it continues to be a battle. I might have been living with a broken heart since birth, but it wasn't until recently that it has really impacted my life. What used to be my parent's problem is now something I have to deal with - the unfortunate part of growing up.
Almost thirty years old, I've had three heart related surgeries. Luckily I can't remember the first two because I was an infant. The third surgery however is very memorable having been only four months ago. I very much remember checking myself into the hospital (alone on a cold December morning), walking into the operating room (the most horrifying scene ever), and waking up from what felt like a run in with a semi- truck. And recovery is not a picnic in the park.
While open heart surgery seems like eh, no big deal because they're doing it all the time now.... it IS a big deal. Most people haven't had heart surgery before the age of 30 and although CHD is quite common, it actually isn't that common when you think about it. I might not have to face major sugery like that again, however my condition will always require special medical attention and worse, will mean a continual battle with one of the major downfalls of a pre-existing condition: insurance.
There are several sources/communities for anyone with or related to someone with a congenital heart defect. Before I went into surgery, it only felt like my doctor was the only person I could rely on, and sometimes that isn't enough. It took me a while to face, to admit that I had this disease and I was seeking others that have dealt with a similar experience. I hope more people will reach out for assurance and knowledge, which really are the keys to accepting and living with this condition.
One resource I found very helpful was the Adult Congenital Heart Association (ACHA). This is a great place for information, webinars, fundraising, and community. Prior to surgery, I signed up for the ambassador program and connected with a young lady who had been though a similar experience. We spoke a couple time before and after my surgery. Her insight and support was something beyond what my family and friends could provide.
As I continue to use this blog as platform for reaching out to others who have experienced CHD and adoption, please feel free to contact me with your story or questions.
* Picture of a heart pillow from Tisch Hospital NYU. A souvenir after heart surgery.