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

Scarred

by Kelly Deeny on Thursday, Jul 21, 2011

Issues of body image have plagued me most of my life. Have I put on weight? Why can’t I be just a few inches taller? Why do I look like a cherub when I put my hair in a ponytail? And on and on…one could assume that having a large scar down your chest would affect my opinion of my body. And that it did. But, for the better.

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A Story of Surrogacy, Part 2

by Alissa Butterfass on Monday, Jul 18, 2011

For Part 1 of Alissa’s story, click here.

Hubby and I agreed that we’d look into surrogacy first (hey, we figured we had made one cute kid, why not try for another?), and if that wasn’t an option, then adoption. But we didn’t know where to even start our research. I was skeptical to look online as I had no idea what information would be valid, accurate and helpful. We didn’t know how to take the first step. We were saddened that pregnancy wasn’t an option and overwhelmed at the thought of trying to figure out what to do next on our own.

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A Story of Surrogacy, Part 1

by Alissa Butterfass on Friday, Jul 15, 2011

As a woman born with Transposition of the Great Vessel, I have many memories of my annual check-up at my cardiologists. And, if memory serves correctly, each check-up ended the same way, with my mother asking the same question: Will Alissa be able to have children? Dr. H repeated the same answer, nearly word for word, each year. “I see no reason why not, but we’ll have to see when the time comes.” At the time, when I was only five or six or seven that question, which was so important to my mother, barely registered with me. My mother never stopped asking the question each year, and Dr. H never wavered from his standard answer.

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Congenital Heart Disease Tests: 6-Minute-Walk

by Stephanie Hodgson on Monday, Jul 11, 2011

As a young girl, I often watched shows like The Bionic Woman in admiration of the ease and speed with which she moved. I dreamed of running a marathon, even though I had trouble running one lap around the track field. I had hope in modern medicine and what the future might bring.

Some of the medicine and technological advancements that have been discovered since 1983, the year I first was diagnosed with my heart and lung problem, require being seen by medical doctors and scientists who specialize in my specific heart and lung physiology, which is usually at a medical facility located in large metropolitan areas, such as New York, Cleveland, Pittsburgh, Philadelphia and Raleigh/Durham.

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Guinea Pigs

by Christy Sillman on Wednesday, Jul 06, 2011

“I apologize in advance that you are sort of my guinea pig,” Terri Schaefer told me before she posted my blog as the first on the ACHA website. It made me laugh. Doesn’t that sort of sum up the ACHDer experience—being the guinea pig?

I can think of all the medications, experiences, procedures, and surgery techniques that were used on me that were considered experimental or “new.” Some of these were breakthroughs in CHD care, such as the use of prostaglandins in the newborn with CHD to keep the ductus open while they awaited surgery. When I was born in 1980, this drug was experimental and my parents “took a chance” when their only other option was to take me home to die.

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Congenital Heart Disease or Congenital Heart Defects?

by Amy Basken on Tuesday, Jun 28, 2011

I love working with ACHA as they advocate to change the landscape for those living with congenital heart defects—or is it congenital heart disease? Ugh. A few months ago, I spent an entire day asking countless patients, parents and professionals about whether I should refer to CHD as congenital heart disease or congenital heart defects in our advocacy documents. I hadn't thought about what a difference a word could make.

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Life with CHD is Still Life

by Alissa Butterfass on Thursday, Jun 23, 2011

Note: While it is a Thursday, this post was submitted by Alissa on a recent Monday morning.

For my first ACHA blog, Terri had requested I write about my experience with gestational surrogacy—which is how my second son S. was born. As I sat at my computer the past two days, that was my intention. In a separate file I have a couple of paragraphs drafted but I couldn’t focus on them. You see, it’s going to be one of those weeks, and all I can think about is my over-extended so-called life. So, I promise to write about surrogacy in a future post but for now, at 8:52 p.m. on a Sunday evening, I share with you my week ahead.

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Open Heart Surgery Preparation Tips

by Heather Abbott on Tuesday, Jun 21, 2011

In June 2008, I had open heart surgery to replace my severely leaking pulmonary valve (PVR). This leak was a direct result of my original Tetralogy of Fallot repair back in 1977 so I’ve always known a valve replacement was possible. My surgery was not an emergency, though it was an inevitable necessity in my life. At the time, I was working full-time in marketing, had two Ivy League degrees, exercised almost daily, and traveled often for both work and pleasure. I had friends and a significant other. Pretty much a normal lifestyle for a young 30-something except that I was born with a heart defect.

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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.