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What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
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Thankful for My First Hospitalization
Thanking Our CHD Doctors
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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.

Author: ACHA Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 8/30/2011 12:37 PM

by Stephie Goldfish

“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?

By ACHA on 8/25/2011 10:43 AM

By Christy Sillman

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…”

By ACHA on 8/22/2011 3:50 PM

By Alissa Butterfass

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.

By ACHA on 8/18/2011 12:23 PM

By Kelly Deeny

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.

By ACHA on 8/16/2011 12:06 PM

By Stephie Goldfish

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.

By ACHA on 8/10/2011 8:38 AM

By Christy Sillman

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.

By ACHA on 8/8/2011 12:22 PM

By Alissa Butterfass

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.

By ACHA on 8/5/2011 11:09 AM

By Amy Verstappen
ACHA President/CEO

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.

By ACHA on 8/3/2011 10:11 AM

By Amy Basken
ACHA Advocacy Coordinator

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.

By ACHA on 8/2/2011 8:56 AM

By Kelly Deeny

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.