Feb 7
Cmm546209 , Posted on SUPPORT NETWORK Blog

Being Diagnosed With CHD as an Adult - My Story of Survival

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I didn’t know I had a Congenital Heart Defect until less than 2 years ago when I was 25. I spent most of my late teens and early twenties fighting to be heard and get a diagnosis from a doctor. I always knew something wasn’t right with my heart. Most doctors just wrote me off when I would go to their office and complain of a racing/pounding heart and chest pains. I remember going to the ER one time and having an extremely high heart rate that had the triage nurse very concerned. When I finally got to seeing a doctor (after having an EKG), he came in my room and asked me while he laughed, “So you think you’re having a heart attack, huh?” I had never said I thought I was having a heart attack, just that something wasn’t right. I had a couple doctors who believed I was having some type of issue (the proof was in my  consistently high heart rate) and tried to help. The first cardiologist I was ever sent to, had an assistant hook me up to a 24 hour holter monitor. It came back uneventful. I never even set eyes on that cardiologist. My primary doctor then came to the conclusion I had high blood pressure accompanied by a high heart rate. I took that as my answer and my life went on with on a new daily medication to control my blood pressure and help slow my heart rate. I still knew something wasn’t right and that I shouldn’t be feeling the way I was. Fast forward 5 years and I find myself working in a cardiology clinic. One day while working, my blood pressure and heart rate both spiked. One of the cardiologist I worked for saw me right away. He set me up for an echo. While my echo was getting done, it was determined it needed to be changed to a bubble study. Since I worked at the clinic, I knew that meant they had found an ASD. A couple weeks later, I was set up for my TEE to determine if I needed surgery to close it. I did. A few weeks after that, I was back at the hospital ready to undergo my laparoscopic surgery. I remember hearing them say during surgery, “We’re not gonna be able to do it; let’s pull out.” The first thing I asked when I was completely coherent (before anyone had a chance to say anything to me) was why they couldn’t fix it. My husband told me there were too many. I didn’t know what he meant by that. I didn’t know I could have more than one ASD. At that time, my cardiologist came in the room with a  Cardiothoracic  surgeon. They explained to me that it turned out I had a total of 6 ASD’s and they were all big. Open heart surgery was my only option. At that time, I had a 4 year old and a 7 month old. I broke down. How was I supposed to take care of my kids if I had to have open heart surgery. I wanted to put it off until my kids were older. My cardiologist explained to me why that would be a bad idea. He explained we were lucky they found these ASDs when they did, that my heart had been working so hard for so long, they couldn’t give me a time frame of how much longer it would continue to be able to keep up. I had my open heart surgery 2 weeks later. It was the most challenging thing I have every endured. I am blessed I have such an amazing husband who took care of everything while I healed. I was back at work 3 weeks after surgery. Everything happened so fast, that I have to slow down and remind myself how thankful I am that I was put in the job I was when I was. It’s been a year and half since my surgery and I feel so much better than I ever have my whole life. Now I’ve been concentrating on eating heart healthy and getting into an exercise routine so I can stick around as long as I can!  

  • AHAASAKatie

    Thank you for this wonderful story! Our Communications Team would love to talk with you more. Can you email us at SupportNetwork@heart.org? Thank you Katie 

  • jcummings26

    Hello! My name is John Cummings. I am a graduate student at NEIU in Chicago. I have found your story to be compelling and worth sharing. I would like to ask your permission to use it in a project for school – your name and picture will not be shown. My email is jrosswellcummings@gmail.com. Please contact me. 

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