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

Going Public

by Amy Verstappen on Wednesday, Sep 28, 2011

Last week, I gave one of the toughest speeches I have ever given in my life. What made it so tough was not that it was to a room full of Congressional staffers, although that certainly didn’t help. Nor was the biggest challenge the fact that there might be press there, or that I would be sharing the podium with some of the smartest people on the planet when it comes to congenital heart disease.

What made it so tough was that I was actually going to have to get up and talk personally about my own journey with CHD. Two days before the briefing, I discovered that my original small role as Q and A moderator had been expanded, and I had eight minutes to talk personally about living with CHD.

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Cycles of Life

by Stephanie Hodgson on Monday, Sep 26, 2011

Every month I order my congenital heart disease medicine. Every month I order my oxygen tanks. Every month, since taking this new CHD medicine, I have to get a pregnancy test. And, every month, since about the age of 13, Mother Nature orders my monthly cycle.

This month, however, when I called in to order my CHD medicine, I got past the normal questioning of setting up a delivery, etc., but then came the question asked every time I call in, "Stephanie, when was your last pregnancy test?"

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My Journey: Waiting for a Heart Transplant

by Lorelei Hill on Friday, Sep 23, 2011

Each morning, a choir of birds positions itself outside my bedroom window. Once in place, the concert begins.

“Ode to the morning! It’s a bright new day,” they seem to be singing.

Autumn has always been one of my favorite seasons, this year even more so. Three years ago, after a series of dizzy spells and ongoing arrhythmia, my cardiologist suggested I “make some lifestyle changes.” Up until then I never really considered how having tricuspid atresia might one day restrict my life. I scoffed and told myself I’d be okay. I’ve always been okay.

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Born This Way?

by Christy Sillman on Thursday, Sep 22, 2011

I made a promise to myself when I was lying in the Pediatric ICU as a 17-year-old recovering from open heart surgery – I would never endure an optional surgery such as plastic surgery. I’d been through enough. It didn’t make any sense to ever put myself through surgery if I didn’t have to.

Now I’m contemplating relinquishing that promise.

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Advice for Bus Stops, Heart Conditions, and Everything Else in Life

by Alissa Butterfass on Monday, Sep 19, 2011

It was bound to happen. After writing in my last post that I always have so many ideas of what to write about for this blog, this time I was stuck. (I believe in the jinx—I should have known better!) Last weekend, I considered writing something about 9/11. Like Stephie, I was at the World Trade Center that day, but after reading her post, I wanted to come up with a new idea. Then I thought about writing about my (negative) attitude toward exercise, but Kelly beat me to it. Even a few hours ago, I wasn’t sure I’d meet my deadline.

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Heart Health

by Kelly Deeny on Friday, Sep 16, 2011

I have an aversion to exercise. I know, I know. I’m a heart patient. I should be taking great care of my precious ticker. But I really despise exercise just for the sake of exercise. Going to a gym, running on a treadmill or doing weights just isn’t motivating to me. For others it is but this is about me so…I hate exercising!

I was a tiny child. My parents had to beg, plead and prod me to eat. Eventually I caught on and cheese became my favorite food. Ah, dairy—I love thee! Growing up I was never overly concerned with fatty foods or how much mayo I put on my sandwich. I didn’t start putting on some weight until my high school years. Part of my slim figure could be due to my metabolism, but I truly believe it was because I was an active child. Afternoons were spent riding my bike, walking to my friend’s house or playing hide-and-seek. As children we loved being outside. That was fun for us! I often wonder if the same holds true for this generation of children.

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Extra, Extra! Read All About It: Superwoman Traverses Land and Sea

by Stephanie Hodgson on Wednesday, Sep 14, 2011

When I think about how I lived through the horrifying and tragic events of 9/11, traipsed nearly eighty blocks after a major Northeast blackout, and survived a mass transit strike during one of the coldest winters, it doesn't surprise me that my twin sister and doctors call me Superwoman.

To me, though, when I think of Superwoman, it conjures up scenes of a super human with powers enough to have been able to avert a tragedy like 9/11 so that no lives would have been lost, or someone who has the power to prevent any undue hardships caused by a major blackout or transit strike. And, Superwoman's heart would be perfect, not needing to be repaired.

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Scar Wars

by Christy Sillman on Monday, Sep 12, 2011

I love how unsuspecting people are when they play a game of scar wars with me. You know—the game where someone shows off their gnarly bike accident scar and then the whole room starts comparing scars. I usually hold back, start off slow with my skin cancer scar, or my busted knee scar, and then—WHAM—I pull up my shirt a bit and the whole room goes silent. It’s awesome, and I’ve learned to use it to my advantage over the years.

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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.