Recent Entries
Summer Vacation: Tips for Traveling with CHD
How Do You Start Your Morning?
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


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 4/26/2013 8:53 AM

By Paul Willgoss

Luck is intangible, but not insubstantial—please give me a smidgeon, for both my next big event and for something that could help ACHDers.

Last year I mainly concentrated on running, and I had a hellishly good year of it. This year is a bit different. With the distances for events I’m looking at being so long, or the terrain so extreme that my normal training routines aren’t up to scratch, my normal thinking just won’t cut the mustard.

By ACHA on 4/24/2013 12:56 PM

By Jon Ritchings, Jr.

I've been playing a lot of disc golf the last couple of weeks. Between the coach of the local high school team leading his kids through the middle of the course and interrupting play, the vandalism to the course, and the amount of garbage that people are leaving, it's given me pause to think about—why? I think it comes down to a lack of respect. All three of those things can be tied back to a lack of respect for the people who use the course on a regular basis. But, I don't want to talk about that. I want to talk about the lack of respect everyone sometimes shows for themselves.

By ACHA on 4/22/2013 12:35 PM

By Meghann Ackerman

It had taken me a few weeks of debating politeness versus curiosity to approach someone I barely knew and ask him about his medical history. But, I reasoned, in his introduction to the class I was coordinating he had mentioned having heart surgery—it wasn’t a secret. Still, I didn’t want to be rude.

I also knew that my motivation was selfish. I wasn’t particularly interested in his actual condition or surgical procedure; I just wanted reassurance that heart surgery was not the end of the world.

By ACHA on 4/18/2013 10:52 AM

By Becca Atherton

If any of you follow me on Twitter, you may know that I was in the hospital. I was having irregular heartbeats and my heart rate was getting up into the 130s. On top of that, these episodes were lasting up to two hours. Needless to say, when that would happen, I would be exhausted afterwards. So while in the hospital, they put me on some more medication to help stop these irregular beats from happening. While these episodes are not dangerous or life-threatening, they were extremely uncomfortable and made me beyond exhausted.

By ACHA on 4/15/2013 1:19 PM

By Alissa Butterfass

Recently I read a memoir by a man who was a year ahead of me in high school. At age 19, he was paralyzed when a truck slammed into the bus he was riding. The author decided to write the book as what he termed his “half-life date” approached—the day when he would have lived exactly half of his life pre-accident and half post-accident. Throughout the book, he reflects on what his life was like before the accident, and describes how life has changed for him since then. As I read Half-Life: Reflections from Jerusalem on a Broken Neck by Joshua Prager, a few ideas struck me in particular.

By ACHA on 4/12/2013 9:29 AM

By Clare Almand

It’s a quote from one of my favorite movies, “Almost Famous,” a film about a teenage boy who gets his dream job to write for Rolling Stone and goes on an adventure touring with one of his favorite bands. I used the quote in a blog post I wrote about my own adventure—when I first moved to New York a little over a year ago. But as I’m on to a new phase within that same journey, I think it’s worth repeating: It’s all happening.

By ACHA on 4/10/2013 1:37 PM

By Ken Woodhouse

Advocacy Day 2013—formerly known as Lobby Day—in Washington, D.C., was simply amazing! As many people know, this annual event, co-hosted by the Adult Congenital Heart Association and Mended Little Hearts, brings volunteers from across the country to Capitol Hill to advocate for congenital heart disease awareness and funding at the federal level. Everyone who attends it comes away with his or her own story of excitement, accomplishment, and admiration. And I am no different.

But what was most impressive to me this year (only my second year attending the event) were the overall numbers:

By ACHA on 4/8/2013 11:44 AM

By Gwendolyn Russell

As I was driving home from my latest doctor’s visit, I began pondering why I have trouble accepting my heart disease. I was born with a heart defect—my mother was unaware of the severity of my illness and she often told me that I was born with a veil over my face—which symbolized that I was going to be someone special. Could it be that I was born blue—with visible signs of a heart defect? I was born at home with only the assistance of a midwife, and no another means of medical attention was accessible.

By ACHA on 4/4/2013 11:19 AM

By Yvonne Hall

Raising a child with CHD can present more than its share of crisis, but I have learned over the years with my daughter Lorie that such times are part of a greater plan. Many setbacks over the years rendered her survival tenuous but were actually stepping stones to unimaginable positive outcomes. I have named these invisible connections my silver thread and learned to be hopeful despite present realities.

My scariest moment in Lorie’s journey occurred four years ago when she suffered an embolism. Most people, even without her fragile condition, don’t recover and for the first time I had to consider the unthinkable possibility she wouldn’t survive.

By ACHA on 4/2/2013 10:32 AM

By Kelly Deeny

So, perhaps my heart’s not actually being torn in three places, but it’s the closest analogy I've got. On Sunday, June 9, there are three different events happening simultaneously and I haven’t decided which one(s) I’m attending.

The past two years I’ve been honored to participate in the Delaware Valley Congenital Heart Walk in support of the Adult Congenital Heart Association. I am proud to help bring consciousness to a cause that matters to me and to an organization that does tremendous work for those of us whose lives have been changed due to congenital heart defects. This year, the Delaware Valley Congenital Heart Walk is taking place on Sunday, June 9, and I’m not sure I’ll be present.