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

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.

Read more

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.

Read more

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.

Read more

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.

Read more

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.

Read more

Moving Mountains and Hearts, Continued

by Stephanie Hodgson on Thursday, Jun 16, 2011

For the first part of this blog post, click here.

The first ACHA Conference I attended was in the summer of 2005 in the New York/New Jersey area. I remember that day so well. I had been going through a separation from my now ex-husband. I was feeling sort of emotionally raw, having been out of touch with everyone at ACHA, and I was feeling isolated and sad. However, at the conference, I met some of the best doctors for my specific heart physiology and defect.

Read more

Moving Mountains and Hearts

by Stephanie Hodgson on Tuesday, Jun 14, 2011

When I first was diagnosed with a large ventricular septal defect (VSD) with Eisenmenger’s physiology at age 17 in 1983, I finally understood why I was always so blue. And, after the numbness wore off from knowing that surgery was not an option for my heart defect, unless I were to have a complete heart and lung transplant, I set my heart on graduating high school with high honors, going on to Art School in Pittsburgh, PA, and graduating at the top of my class in December 1985.

Read more

About My Father, A Man Affected by TGA

by Jessica Garner on Friday, Jun 10, 2011

I am a neonatal nurse and the daughter of a man affected by transposition of the great arteries (TGA). Growing up, I never saw or knew the effects of my father’s heart condition. Now, as a nurse working with newborns, I see firsthand what my father and his family went through. This is the story of my father, in his own words, that describes what he’s been through since birth:

Read more

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.

Check out our profile