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Lean Forward
Be Your Own Patient Advocate
Remembering the Caregiver’s Well-Being
What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
Thanking Our CHD Doctors
Fussing Over Your Features
Health Above All
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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.

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 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.

By ACHA on 6/21/2011 12:06 PM

By Heather Abbott

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.

By ACHA on 6/16/2011 10:06 AM

By Stephie Goldfish

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.

By ACHA on 6/14/2011 9:15 AM

By Stephie Goldfish

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.

By ACHA on 6/10/2011 9:15 AM

By Jessica Garner

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:

By ACHA on 6/7/2011 11:01 AM

By Paul Cardall

There are more than a million adults living with congenital heart disease.

A little over a month ago, the Adult Congenital Heart Association gathered for a conference in L.A. that brought together a majority of physicians who specialize in caring for potential lifelong survivors in the field of congenital heart disease.

I was fortunate to attend with my wife and meet many of these doctors along with several adult survivors who like me are enjoying a good life despite its many challenges.

By ACHA on 6/2/2011 12:43 PM

By Kelly Deeny

Music has been an instrumental—pun intended—part of my life since I had open heart surgery back in January of 1979. Not quite two years of age, I lay in a hospital crib waiting for my body to heal. Through what I can only guess were feelings of fear, loneliness and confusion at my situation, I do know one thing—my love affair with music began during that time.

I'm very thankful to have two parents who appreciate the creative arts. For whatever reason, they decided to play records for me when I was recuperating from my surgery. From what I've been told some of their choices included Disney albums and the soundtrack from “Grease.” Which explains a lot! Believe me, I consider myself a full-blooded Disney-fied girl and I know pretty much every word, spoken or song, of “Grease.”

By ACHA on 5/26/2011 10:04 AM

By Christy Sillman

Patient or nurse, nurse or patient — who am I? This was a question I faced often while I attended the Adult Congenital Heart Association's national conference in Los Angeles about a month ago.

I had intentions to stretch myself between both worlds — to attend both patient and health professional sessions. After all I am both a nurse and an adult with congenital heart disease.

My name badge didn’t specify “who” I was, but next to my name badge, my role was very clear. My “zipper” isn’t that red anymore, but it is visible to those who look for it. I caught myself staring at attendee’s chests, looking, wondering… professional or Zipper Club member?

By ACHA on 5/24/2011 9:14 AM

By Terri Schaefer
Communications Manager

On behalf of ACHA, and especially all of our ACHA future bloggers, I want to welcome you to our new ACHA Blog! Thank you for visiting, and I’m looking forward to you becoming regular readers to see all that we have to offer; we have quite a few bloggers on board who will post about many topics relevant to the CHD community.