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When You Find a Member of the CHD Club

Monday, February 09, 2015

By Daniel Spandau

I was dropping off my dry cleaning the other day. As I was helping the lady sort out the shirts, I noticed that thin, telltale scar on her chest. “Oh,” I thought to myself, “she is a CHD club member.” I’m the kind of person who doesn’t feel uncomfortable sometimes stepping over the line and saying something too personal to a stranger.

“Open heart surgery?” She looked up with a smile and “yes.” The woman looked to be in her 50s and she very proudly told me that she had the surgery in Cali, Columbia, 45 years ago. She said she was the first person ever to have surgery in the city, continuing with “….and I don’t take any medication.”

I told her my story—almost identical, surgery 54 years ago, no medicine, NYC. But I was concerned that she was not getting follow-up care. I asked her if she sees a doctor to get checkups. “Oh yes, last year, but he is a general practitioner.” I think she had TOF, but her English was not very good.

My ACHA radar went up. I wanted to make this conversation a bit more personal – “What’s your name?” “Carmen,” she replied with a smile.

“Carmen, you really need to get better follow-up care from a cardiologist who understands our CHD condition better.” I explained the issue that we were repaired but not cured.

She looked at me with a bit of concern. I so wished I had my ACHA Ambassador card with me so she could connect with our organization. I told her about my ACHD cardiologist. He is still classified as a pediatric cardiologist in a Children’s Hospital – that was a bit strange for her to understand. I explained that the cardiologists who are local do not have the training for our conditions. I wrote down my ACHD cardiologist’s name and the name of the hospital.

I will be picking up my dry cleaning in a day or two. This time I will have my ACHA card with me and I will definitely follow up with Carmen to see if she has scheduled an appointment.

I have actually had only half of this type of conversation a few times before. Before ACHA awareness that many of us are not getting the follow up we really need, the conversation stopped at recognizing an open heart surgery scar, maybe a smile and thumbs up. Now I ask about their follow-up care.

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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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