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

My Writing Comes into Focus

by Alissa Butterfass on Thursday, Sep 08, 2011

This is my seventh posting for the ACHA blog. For the first time outside a class setting, I have committed to and actually followed through on writing regularly. As it says right in my bio below, I’m a wannabe author. The only problem was that I wasn’t writing. Sure, I was great with a rehearsal dinner toast or a 40th birthday roast. I had taken a few fiction and memoir writing classes, loving the short in-class assignments but struggling with larger homework pieces. And, I never really sat down and wrote just to write. I hadn’t even kept a journal since studying abroad my junior year of college.

I was starting to think that maybe I wasn’t meant to be a writer. Maybe being an avid reader and a lover of the written word just wasn’t enough to actually make me a writer. Maybe it wasn’t going to happen.

Certainly of all the things I had imagined writing about, I never imagined that my writing would focus so directly on my heart condition. Yes, in any memoir it would certainly make an appearance, a recurring guest star perhaps, but I didn’t see it as the starring role.

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A World of Funky Hearts

by Amy Verstappen on Tuesday, Sep 06, 2011

I am sitting in the airport in Los Angeles, on my way back from a wonderful trip visiting with HeartKids Australia, an organization that invited me to help kick off their planned expansion into adult-directed activities. I left highly impressed with both the HeartKids organization, which is well-funded and well-organized, and the ACHD care in Australia, which seems to be the same. One of the gifts of running ACHA is invitations to visit other countries and learn more about what living with CHD looks like in other places. Often I am reminded that each heart patient’s journey is as profoundly affected by their birthplace as by the shape of their funky heart.

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Past, Present and Future

by Kelly Deeny on Thursday, Sep 01, 2011

I’ve been thinking a lot lately about whether I focus too much on the past. On what I could’ve done differently. What experiences taught me certain lessons? It’s not just the negative memories I focus on, though. I think back fondly when recalling good friends, happy moments and exciting adventures. Truthfully, I think looking to the past can be valuable—in certain situations.

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In the Face of Death, Follow Your Heart

by Stephanie Hodgson on Tuesday, Aug 30, 2011

“Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.” ~Steve Jobs

Three years from turning thirty, I came to an awakening about my life—where I had been, where I was at that moment in time, and where I was headed. It all hit me like a head-on collision. I’ve never been the same since. I wondered, at that time, why now, and not then?

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Music Helps My Heart Beat

by Christy Sillman on Thursday, Aug 25, 2011

One of the most vivid memories of my last open heart surgery in 1998 was driving through San Francisco on our way to UCSF with the music blaring. I felt a pit in my stomach as I contemplated whether that day would be the final day of my life. I felt an urge in my legs to tremble but instead I was forcing them to tap to the beat. The song was “Hit Me with Your Best Shot” by Pat Benatar.

“You’re a real tough cookie with a long history, of breaking little hearts like the one in me” — was I imagining God or my surgeon when I sang along to that lyric, or maybe just fate?

“That’s OK, let’s see how you do it. Put up your dukes, let’s get down to it. Hit me with your best shot. Fire away…”

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A Shout-Out to All the Moms, Especially Mine

by Alissa Butterfass on Monday, Aug 22, 2011

Usually when I think of my heart condition, it’s that—MY condition. Something that is a part of me. Part of my life. My issue. As someone who has been living with a CHD for nearly (cough, cough) years—ok, 40—I feel like I am an authority on the subject in a special way exclusive to only those of us who have been living with a CHD.

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No Smoking

by Kelly Deeny on Thursday, Aug 18, 2011

My beloved grandmother (aka Mom Mom) died of a heart attack when I was seven years old. I adored her. Loved her with all my heart. She was an incredible woman. One full of strength, love and unwavering support. But for all her tremendous attributes there’s only one that creates disappoint within me; she was a smoker.

It was the mid-80s, so smoking was still accepted most places, but when she died I lashed onto something to blame. And smoking became my nemesis. Even during a health presentation in elementary school I railed against it. Even if smoking didn’t cause her heart attack, it most certainly didn’t help the situation. And so, I vowed never to take up such a deadly habit.

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The Heart of the Matter

by Stephanie Hodgson on Tuesday, Aug 16, 2011

These days when I listen to my heart I hear things that are sometimes too hard to bring to the surface. Like the pain of being divorced twice and the reality of possibly never being in a successful relationship in the future. Like the pain of trying to have a child despite that I put myself in extreme danger by getting pregnant twice, but both times having ectopic pregnancies, which almost killed me.

I'm constantly being barraged by other outside forces these days too. My lately nomadic lifestyle, my impulsive decision making, and not being grounded, keeps these deep-seated feelings buried alive, keeps me at ground zero, prevents me from getting from point A to point B, and hinders me from making any real progress.

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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.