Our ACHA bloggers cover many topics relevant to the CHD community. If you are interested in blogging, please email info@achaheart.org.

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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An Open Letter to my CHD

by Ken Woodhouse on Wednesday, Jul 12, 2017

Dear Topher,

I hate you! What have I ever done to you? I mean, seriously!? For seemingly no apparent reason, you have put me through some of the worst times in my life (both physically and mentally), and you caused my family and friends to worry about my very survival in the face of major surgery—not once, but twice. And knowing you, you may very well have plans to do so again in the future.

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CHD and Sports

by Deb Flaherty-Kizer on Friday, Jul 07, 2017

Sports? Me? No way. “Sports” and “athlete” were never words in my vocabulary. My CHD diagnosis was not made until I was a young adult—it was thought I just had a heart murmur—so I never linked my tiredness to a heart condition. I was not athletic as a child, never understanding why I couldn’t run as fast as the other kids or keep up with them in gym class. I was usually the last one picked for a team, and was often bullied for my lack of athletic prowess. For me, team sports did not work. I felt like a total failure in all things athletic. Thank goodness, I excelled at academics.

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Adult Congenital Heart Disease: Changing Habits And Modifying Lifestyles

by Allison M. Callender, PA-C on Monday, Jul 03, 2017

Even though we are part of Texas Children’s Hospital, at the Texas Adult Congenital Heart Center (TACH Center) we see adult patients every day. Our patients, like many adults, face the challenge of changing habits and modifying their lifestyles.

As a physician assistant, I embrace my responsibility not only as a healthcare provider, but also a health educator. For example, I look for opportunities to empower each patient to take responsibility of his or her health plan. I stress that we need to be partners in this process; we are equal partners with equal, though different, responsibilities. This arrangement makes sense to patients, and they outwardly embrace it.

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The Guilt of Living with a Heart Condition

by Emily Moore on Wednesday, Jun 21, 2017

Throughout my childhood, my heart condition was never something that defined me. Growing up with it, it was almost like I didn’t even know. More recently, with getting married and wanting to start my own family, it has come to the forefront of my mind. My heart condition was always just a part of me, and I honestly didn’t do anything different because of it.

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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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