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

Cardio is Hardio: Running With CHD

by Annie Kaftor on Thursday, Dec 06, 2018

How I became a runner after many years of cardiologists telling me I “can’t” run still amazes me. I was born with hypoplastic left heart syndrome and had three open heart surgeries by the time I was one. I was always told I should do some sort of cardio but running is a no-go (“can’t” lift anything over my head and definitely “can’t” run a mile for gym class).

All that changed December 12, 2015, when I decided to run my “first” 5k with some friends at the San Diego Santa Run.

Read more

CHD and Finding “The One”

by Lauren Bednarz on Thursday, Nov 29, 2018

My husband, Chris, and I have been together 10 years and married almost seven. Some days I still can’t believe I found my soulmate and very best friend. I’m so grateful and blessed to have him in my life.

When I was born 31 years ago I was supposedly a healthy baby girl, but at 10 weeks old and in heart failure, I was diagnosed with complex congenital heart defects: tricuspid atresia, hypoplastic right ventricle, and ventricular septal defect. Medical technology to help save us complex CHDers was still so “new,” and my parents were living moment to moment never dreaming that 31 years later I would be happily married and living a wonderful full life despite all the challenges I have faced.

Read more

Bridging the Healthcare Gap: Satellite Clinics for Improving Access to ACHD Care

by Whitney Pack, BSN, RN on Wednesday, Nov 07, 2018

Let’s face it, not all patients want to travel to see a doctor, regardless of their diagnosis or symptoms.

In adult congenital heart disease (ACHD), it is estimated that more than 40% of patients live more than two hours away from an ACHD center. One of the most important obstacles we face is getting the affected patients in the door to receive care. Some patients never transitioned to adult care after they got “too old” for their pediatric cardiologist, some think they have been “fixed,” some lack insurance, some think seeing a general cardiologist is sufficient, and many lack the knowledge of how important it is to see an ACHD-trained physician.

Read more

CHD: When You’re a Physician and a Patient

by Sweta Shah on Friday, Oct 26, 2018

Everyone always jokes with doctors, “What happens if you get sick?” Some of us laugh off the question. But, I am a family medicine physician dealing with congenital heart disease (CHD). I was born with right ventricular hypoplasia, which means my right ventricle is just a small flap unable to adequately pump blood. The diagnosis of CHD for me meant multiple surgeries in my infancy followed by a lifetime of “being careful.”

Read more

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.

Read more

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.

Read more

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.

Read more

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. 

Read more

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.

Check out our profile