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

The Heart Disease Label

by Christy Sillman on Wednesday, Aug 10, 2011

I remember the first time I sat in an adult cardiology waiting room. It was refreshing to have adult-themed magazines to look at and I enjoyed the peace and quiet of the elevator music. I still stood out from the crowd, but this time instead of being the oldest patient in the room I was now the youngest. I wasn’t quite sure of what to expect when I transitioned into adult cardiology care, but I never anticipated how much I would ultimately need to advocate for myself in a world where the title “heart disease” is synonymous with coronary artery disease, or acquired heart disease.

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Some Candid Thoughts and Advice on Surrogacy

by Alissa Butterfass on Monday, Aug 08, 2011

For those of you considering gestational surrogacy, please know there is no one right way to go about it. Here are just some thoughts I can share based on my own experience (which I blogged about here and here). I am always very open and candid about what I went through, so if you’d like to discuss further, please feel free to contact me through ACHA.

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Push It

by Amy Verstappen on Friday, Aug 05, 2011

The joke in my family is that I never met a bureau I did not want to move. Although none of us have an athletic bone in our bodies, of my five sisters I am by far the most physically active. I am lucky enough to have had a pediatric cardiologist who, even back in the 1960s, believed in self-regulation. Told to do whatever I wanted “until my body said stop,” I took this instruction quite literally. When playing tag, my signal to stop was my heart pounding so loud I could not hear, combined with the distinct urge to both faint and vomit.

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Funding Research: Chocolate or CHD?

by Amy Basken on Wednesday, Aug 03, 2011

I love chocolate. Dove Dark Chocolate Promises. Well, and M&M’s, too. This should come as no surprise to anyone who knows me.

Any woman I know would agree that chocolate is wonderful—it reduces stress, renews energy, and may even be an aphrodisiac. Many women will also agree that chocolate may save lives—particularly those of our spouses. Thus, in our house, the tradition of chocolate for Valentine’s Day has morphed to the giving of a bag of Dove Chocolate once every 28 days.

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Writing Imprints

by Kelly Deeny on Tuesday, Aug 02, 2011

If you had told me that one day I’d write a young adult fantasy novel I would’ve said, “Wonderful! But I’d much rather be on Broadway.” Clearly, I’ve had a long-standing love affair with musical theatre—one which plagued me with hopes, dreams and doubts of my musical ability. So even though my writings were praised by loved ones and strangers alike, I didn’t value their importance in my life. I was going to sing on stage, not write! I didn’t fathom how the two would intersect so many years later.

In a previous post I mentioned my connection to the creative arts and how they helped me heal after my open heart surgery. Music may have been the initial form of spiritual healing but somewhere along the way writing became an even more powerful and instrumental tool.

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A Momentous Occasion for the CHD Community

by Amy Verstappen on Thursday, Jul 28, 2011

As President of ACHA, there have been a few peak moments where it really feels like, “We did it!” Last week was one such moment, when I traveled from Philadelphia down to D.C. to be present as the Social Security Administration (SSA) added seven congenital heart conditions to those fast-tracked for disability payments.

Spend a few days around congenital heart patients and you quickly realize that the disability system is a big problem. Although our members are often severely debilitated by their CHD, our conditions barely exist in the current decades-old review system. Members routinely report multiple rejections and years of fighting to get benefits. Disability payments, though woefully small, can be an essential lifeline for those too sick to work. Because we live in a country which perversely insists on tying health insurance to employment, being too sick for a full-time job often means no coverage.

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Seeing Myself in My Patient’s Eyes

by Christy Sillman on Tuesday, Jul 26, 2011

“Why did you want to become a nurse?” is a question I get often, especially after people learn about my congenital heart disease. I’m not even sure how to answer that. Some days I hesitantly ask myself the same question.

It’s not like I entered nursing school with the final goal to be working in the pediatric ICU; in fact, I feared that unit the most out of all our rotations—well, that and the operating room. They both hit a little too close to home. My goal was to get my RN license and go work in a clinic or another non-hospital related nursing area. But something happened when I started working with patients in the hospital—I related to them in a special way because of my experiences, and they appreciated it.

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What's Your Excuse?

by Alissa Butterfass on Friday, Jul 22, 2011

I did something yesterday that I almost never do and that I am not entirely comfortable with: I used my heart condition as an excuse.

The weather forecast had called for near 100 degree temperatures, and a heat index of 105. In other words, really really HOT. Usually on Thursdays I work in the city at my company’s corporate headquarters (on Tuesdays and Wednesdays I work from home). But the thought of commuting by rail, subway and foot to my office while carrying my laptop and a change of shoes, among other things, really was unappealing and was, according to “Dr. Mom,” dangerous (note: my mom is not a doctor but claims she has learned enough over the years to be one).

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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.