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

Pacemaker Check, Reality Check: Implanted Cardiac Rhythm Devices and Hacking

by James C. Perry, MD on Friday, Sep 22, 2017

There has been a small amount of coverage in the news cycles lately about the potential for pacemakers and defibrillators to be subject to hacking. Notably, in a 2012 episode of the Showtime series, “Homeland,” a Vice President character’s pacemaker was hacked and reprogrammed, causing his demise. This certainly resulted in some increased patient phone call volume in physician’s offices at the time, with people asking, “Can my pacemaker be hacked?”

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The Beauty of My Oxygen

by Becca Atherton on Friday, Sep 15, 2017

I was a counselor this year once more at a camp for kids with CHD. The camp is Nick and Kelly Children’s Heart Camp in Prescott, AZ. My cabin was wonderful. I had three campers that I had last year, so it was great getting to see them again this year.

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Navigating the Detours

by Misty Sharpe on Wednesday, Aug 30, 2017

As children, we all have dreams of what we want to do or be when we grow up. At one point, I was convinced I was going to be an actress or comedian. If you could sit down with my mom and listen to the stories—or worse yet, watch some of the embarrassing videos of me as a child—that very well could have come true.

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The Importance of Research to the ACHD Patient

by Melissa Hartman on Thursday, Aug 24, 2017

Perhaps what any of us may think about our congenital heart disease (CHD) may not necessarily based on scientific fact. It may stem from us clinging to our thoughts or beliefs despite any scientific evidence. For example, in sports, we are often superstitious. I know I am! If I do not watch the game, my team will win. If I watch, they will lose. I have no actual evidence to support this belief, of course.

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My Struggle with FOMO is a Real Thing

by Mary Beth Meyer on Friday, Aug 18, 2017

FOMO—fear of missing out. I think it’s a real feeling and an even bigger one for people with a congenital heart defect.

As I’m not too far away from closing out my 20s, I haven’t gotten the chance to have my own apartment, be settled in my career, or even really have a social life (yes, that means dating). The last five years, I have gone through two open heart surgeries, four months of recovery, endless doctors’ appointments (not even just for cardiac related), multiple physical therapy sessions, a few jobs here and there, graduate classes, and many many many times where I have had to say no to events due to my health.

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On CHD and Traveling

by Stephanie Swirsky on Friday, Aug 04, 2017

When I found out that I was going to Cuba with CubaOne on their TuCuba Literary trip, I thought about the Cuba I see in photos on the news and Instagram. A run-down Cuba and beautiful Cuba. A Cuba that is trapped in time, and Cuba that is rapidly progressing forward.

I also couldn't help but wonder, if Dan were still alive, could he travel to Cuba? Dan had tricuspid atresia, an uncommon and serious form of CHD.

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Advocacy in Action

by Susan Timmins on Wednesday, Jul 26, 2017

I traveled to D.C. recently, worried about the impacts the proposed health bill in the Senate would have on those with CHD. Attending CHD Advocacy Day with ACHA over the past decade (like earlier this year, pictured) has given me training and guidance from ACHA staff on advocating with our legislators.

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Empathy for the Routine CHD Patient

by Kelly DiMaggio on Thursday, Jul 20, 2017

As the first generation of adults living with CHD, I'm sure that just about all of us have faced an ignorant or beyond frustrating experience when dealing with a seemingly routine illness for a heart-healthy individual (like a stomach flu or upper respiratory infection) that is inherently more dangerous or has more severe complications for a CHD patient. Many of those who aren't familiar with complex CHDs, or who have never glimpsed into the life of someone with chronic illness, often have trouble grasping how these seemingly "run of the mill" illnesses can be much more serious for a CHD patient—including educated and well-intentioned medical professionals.

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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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