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Embracing my CHD and Connection to Community

Wednesday, February 14, 2024

By Claudia Norman

To honor Black History Month, ACHA board member Claudia Norman is sharing the history of her own CHD journey. What follows is a breakdown of her story and making the decision to increase her impact by becoming a part of ACHA.

Why was I born this way? Why does my heart race? Why are my feet swollen? Why do I suddenly just feel crummy? Whenever we’re confronted or facing a health crisis, it can be scary, uncertain and it could lead you to think “why me”?

I was born with a heart murmur. That is what the doctors told my parents when I was about eight years old. My primary care doctor likely detected my heart dancing to its own unique irregular beat! Thankfully for me, nothing changed; I felt fine, so for most of my childhood and adolescence growing up in the 70s and 80s life was normal, life was good.

Fast forward to 2013. I’m working, I feel crummy, and think that I have the flu. I went to the onsite health center and the doctor who took my pulse was alarmed because it was racing. She wanted to give me an EKG, but I refused. I just wanted an antibiotic, thinking that would “cure” everything—ha! She recommended that I go to my primary doctor, so the next day I did, only to experience the same the same thing—racing heart, lethargic, and sweaty.

I should note, I was being seen periodically by a cardiologist. I had been tested and scanned but nothing was ever conclusive as to what kind of murmur I had, or if it needed to be repaired. So, I’m still thinking I have the flu. My primary doctor, with a raised sense of concern, sent me to my cardiologist and got me in the same day (that rarely happens!). After running some tests, the cardiologists sent me to the ER. I believe they thought I was having a heart attack!

But it was endocarditis (an infection) that had me in the hospital for seven days, and about six weeks of IV antibiotics 3 times a day. But then I was… fine. Well, the cardiologists were intrigued, but still were not quite sure what was wrong with me.

Summer 2018 was the last straw. My heart started racing. I would sweat and have to sit down—it felt like I had just completed a marathon. I had to be cardioverted and was prescribed medication by my adult cardiologist. But this was just a stopgap. It wasn’t until my adult cardiologist sent me to the adult congenital heart specialist team at Connecticut Children’s Medical Center located in Hartford, CT, that answers came.

After running tests, this team finally:

  • Knew what was happening.
  • Knew how to correct it.
  • Communicated a plan of action with confidence.
  • Took the fear out of the message of hearing I needed open heart surgery.

In May of 2019, I had open heart surgery to repair a coronary cameral fistula and a maze procedure to correct my atrial flutter. I was ready. And to God be the glory, my surgical procedure and subsequent care has me healed, healthy, whole and happy!

During this time, I was fortunate to connect with a community of individuals with adult congenital heart conditions. I had to give back—my support, resources and time to spread awareness. The Adult Congenital Heart Association (ACHA) serves as a champion for individuals with CHD and their families. What an awesome platform!

I’m glad I was chosen for this. And I embrace my scar, especially since I keloid! My CHD has been an unexpected blessing.

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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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