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I Am the Only Person I Know with CHD

Friday, August 15, 2014

By Jorie Malone

I am the only person I know with Ebstein’s anomaly. In fact, I am the only person I know with congenital heart disease. For the longest time, this didn’t bother me. Growing up, I was fortunate to run around like any other kid. Having CHD was something I seldom thought about, and the reminder usually came every couple years when I had a cardiologist appointment.

Today, my circumstances have changed and I am very interested in making connections with people who have CHD. For that reason, I am excited to attend ACHA’s National Conference in Chicago for the first time, and it couldn’t have come to a better place at a more perfect time!

Seven months ago, I had my second open heart surgery (my first surgery was at five months). For five years, I knew that surgery was inevitable. However, when the time came, I was still surprised. As a 24-year-old living a fast-paced life as an inner city high school teacher in Chicago, the timing for heart surgery was not ideal and somewhat difficult to accept.

On December 30, 2013, my amazing surgeon and his skilled team performed a successful tricuspid valve re-repair. For the next five days, I was under the supervision of the outstanding surgical team, my brilliant ACHD cardiologist, and the incredibly caring and competent nurses.

Immediate post-op life was a bit more intense than I expected. When I first woke up after surgery, imagining a full recovery was almost impossible. However, I took each day as it came and tried to stay positive at all times. The issues of pain, insomnia, terrible hair days, and being overfed laxatives made for a unique start to 2014. On a positive note, the buzz I had on this New Year’s Eve was much more powerful than champagne has brought me the past few years. Despite it all, I could not have asked for a better experience with heart surgery at my ACHD clinic.

Upon returning home to Chicago, recovery continued to be a roller coaster. I developed atrial flutter, which sent me back to the hospital for a couple days and left me a tad discouraged. After that, there were minor issues, but it was mainly smooth sailing. I was able to go back to full-time teaching responsibilities after eight weeks. Now, I feel better than ever and I am taking baby steps to becoming a runner by training for my first 5k this fall.

Throughout it all, my family and friends were absolutely amazing. They showed their support and love through funny cards, visits, meals, gifts, and calls. My medical teams were also helpful in making me feel comfortable and informed throughout recovery. I think the only possible thing that could have made my experience better would be to have been part of a community of people who have had similar experiences.

I have chosen to become more involved with ACHA through following the website, attending the conference, and writing for the blog because I am missing a connection with people who understand. After heart surgery, I have a new perspective on life. Getting a parking ticket or being stuck in traffic is no big deal any longer. Climbing multiple flights of stairs without stopping or running for almost 40 minutes feels as triumphant as finishing an Ironman to me! While my family and friends love celebrating these victories with me, there will always be a disconnect.

At the conference, I hope to meet people who actually know what Ebstein’s anomaly means when I mention it for the first time. I am interested in speaking to young professionals who have also had to put parts of their twenties on hold to have open heart surgery. I would love to get to know women who have been able to have normal pregnancies and start beautiful families. For the reasons mentioned and many more, I am excited to attend the conference and become more informed, get inspired by stories, and for the first time, meet people who I can relate to in this special way.


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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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