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I Am No Longer the Only Person I Know with CHD

Monday, September 15, 2014

By Jorie Malone

Well, I can now say that I’ve met tons of people with CHD. I even spoke to one person with Ebstein’s, which is my fairly rare anomaly. Just like I hoped for (and blogged about prior to the conference), I was able to connect with people who have similar experiences, learn more about my future living with CHD, and make plans to become more involved in the organization. I’m very thankful I decided to attend the conference this year in Chicago!

The weekend of the conference fell directly after my first week as a 7th grade Language Arts teacher at a new school. It was a hectic and tiring week, so the ACHA conference was not in the forefront of my mind. Even when the weekend rolled around and it was time for me to go, I still had trouble detaching myself from my overwhelming teaching load. I decided to give myself Friday night and Saturday morning to regroup and then attend the conference beginning Saturday afternoon.

As my lazy Saturday morning progressed, I kept pushing back my departure time to the conference. I only live a few miles north of the hotel where it took place, so it was easy for me to justify leaving later and later. Finally, I quit procrastinating, got dressed, and hopped in a cab to make it for an afternoon breakout session. Upon arrival, I noticed that the schedule I had seen online was different than the final schedule. It turned out I was able to make it to a session about women with CHD and pregnancy, which I was so pleased to realize I could attend.

When I took my seat in the room, I heard someone greet a person by a very familiar name. At that moment, I discovered the person presenting was my cardiologist! After dragging my feet all day, I was finally at the conference and in the exact right place at the right time. What a positive start!

It continued to be a positive experience throughout the whole rest of the evening. My friend Katherine, who is a nurse, met me for the cocktail hour. We had some appetizers and wine while we walked around and mingled. We set our drinks down at a table of a few people in our age range, and became fast friends. It was a nice mix of patients, friends/family of patients, and a doctor in his residency.

At dinner, a few of us who met at cocktail hour sat together at a table with several others, including a couple of patients and board members. The man I sat next to had the same surgeon as me, so that was a fun coincidence. Conversation at the table was really entertaining and interesting, and the presentations were also really informative. I particularly enjoyed the speech given by the former president, Amy. I could really relate to her story and I loved how she has been able to live such a full and purposeful life despite her condition.

Toward the end of the ACHA evening festivities, the group of us who met at cocktail hour decided to go out for a drink. Since a few of us in the group are from Chicago, we were able to show the non-natives a taste of Chicago at night. We ended up sitting at a rooftop bar and chatting like we’d been friends for years. We talked about a wide variety of topics and laughed a lot. It was clear that our positive outlooks on life and shared experiences with CHD helped us form that quick bond.

Overall, I am so happy that I attended the conference. It seemed like all the stars were aligned that weekend in many ways. First, by allowing me to make it just in time for the one presentation I was most interested in (by my doctor)! Then, stumbling upon a small group of people who became fast friends. I had a blast, became more aware of what lies ahead for me, and most importantly, gained even more perspective from and appreciation for those who fight every day to stay healthy. Thank you for a wonderful experience, ACHA!


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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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