Recent Entries
Balancing Parenting & Congenital Heart Disease
The First Five Years
My Journey to a Grateful Life
Now What?
Medical Home Sweet Home
Still Cliché’?
To My Village: Thank You
Education is Key in Spreading the Word about CHD
My Own Distinct Voice
A Birthday Reflection on Medical Advancements


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: Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 7/28/2011 8:23 AM

By Amy Verstappen
ACHA President/CEO

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.

By ACHA on 7/26/2011 1:41 PM

By Christy Sillman

“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.

By ACHA on 7/22/2011 8:18 AM

By Alissa Butterfass

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).

By ACHA on 7/21/2011 9:45 AM

By Kelly Deeny

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.

By ACHA on 7/18/2011 8:44 AM

By Alissa Butterfass

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.

By ACHA on 7/15/2011 9:23 AM

By Alissa Butterfass

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.

By ACHA on 7/11/2011 11:07 AM

By Stephie Goldfish

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.

By ACHA on 7/6/2011 9:07 AM

By Christy Sillman

“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.

By ACHA on 6/28/2011 9:23 AM

By Amy Basken
ACHA Advocacy Coordinator

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.

By ACHA on 6/23/2011 10:22 AM

By Alissa Butterfass

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.