Our ACHA bloggers cover many topics relevant to the CHD community. 

Preparing for a Natural Disaster When You Have CHD

by Misty Sharpe on Thursday, Sep 13, 2018

Natural disasters can cause catastrophic damage leaving many without power, food, water or shelter for days or weeks. While a natural disaster can strike at any time, if you have advance warning, it’s important to be prepared especially if you have a chronic illness such as congenital heart disease (CHD). In this post, we share a few helpful tips to prepare for a natural disaster.

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Miss West Virginia: The Paradox of My CHD

by Madeline Collins on Tuesday, Aug 28, 2018

For as long as I can remember, I have felt that my heart condition was a paradox in my life, an inconvenient reality that did not match my body or spirit. A dancer since the age of two, I have spent most of my life on a stage asking for attention, yet wanting the scars of my surgeries never to be noticed. I wanted to stand out during every performance while always hoping that no one noticed when I fatigued quicker than my fellow dancers, or that my coloring was fading to pale by the end of a piece.

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It’s All About Community

by Kathleen Hutchinson on Monday, Jul 30, 2018

I have found many of us share the same story: We thought we were “fixed,” then it turns out we weren’t. We go on to have life-changing surgeries later in life, uncovering hidden traumas we thought were buried forever. We thought it was OK to see a general cardiologist, then we learned the hard way—we need a specialist.

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The Reasons Behind The "Why"

by Jessica DiGiovanni on Friday, Jun 29, 2018

While fundraising campaigns like the Meil Family Foundation Valentine Match Challenge and #GivingTuesday are important to funding ACHA’s important mission and programs, as a non-profit organization, one of the biggest things ACHA depends on is funding consistency, so that we can continue to serve the ACHD community throughout each year. 

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Getting Good at Transitions

by Emily Earhart on Tuesday, Jun 19, 2018

It’s that time of year again where every weekend is filled with graduations and weddings. For many people, summer represents a season of transition—the transition from high school to college, adolescence to adulthood, student life to work life, single living to co-living. All these summer transitions bring changes to ourselves and in our relationships with others.

Those living with congenital heart disease know transition well. We often talk about transition as “THE transition”—moving from pediatric cardiac care to adult cardiac care. Until recently there were no universally accepted medical guidelines for this transition. I always thought I would see my pediatric cardiologist my whole life. It wasn’t until I was 30 years old, married, and thinking about family planning that I found out there was such a thing as adult congenital heart cardiologists.

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A Lesson on CHD and Acceptance

by Marissa Mendoza on Tuesday, Jun 12, 2018

I had been studying for my last college exam when a friend from the Adult Congenital Heart Association asked if I would become involved with a “Congenital Heart Disease (CHD) Assembly” in Northern New Jersey. The assembly was for third to fifth graders, and their school was doing a week-long CHD awareness/fundraising event prior to the assembly. Just over 22 years ago, I was born with six complex congenital heart defects, and I underwent three open heart surgeries before I was two. I was within weeks of finishing my nursing degree when I was asked about the assembly, so I was eager to get involved with an event so close to my heart not only personally, but also professionally.

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Unite to Fight Congenital Heart Disease

by Kelly DiMaggio on Thursday, May 03, 2018

I had the privilege of attending the 2018 DCMARVA Congenital Heart Walk this past Saturday and it was by far the most meaningful walk I've participated in thus far. My husband Mike first got involved in the Congenital Heart Walk even before I did, four years ago. I was out of town the weekend of the walk and Mike, within 72 hours, realized he could get the day off of work and attend the walk for the both of us.

In that short time, he raised more than $3,000, manned the registration table as a volunteer, and walked alone in my honor.

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Emotional Recovery after Open Heart Surgery

by Krista LaPunzina on Wednesday, Apr 25, 2018

Why did I have to go through open heart surgery TWICE? Why did I have to lose my favorite hobby (long distance running)? Why? I am so angry, sad, and I still just don’t believe this…

The mantra above goes through my head all the time. Two years ago I was a happy and healthy gym rat. Spin classes, marathons, sprints, swimming laps for hours—you name it, I was doing it. Then I had crushing chest pain (at the gym, of course) and was eventually diagnosed with anomalous right coronary artery (ARCA).

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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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