Recent Entries
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
No Middle Ground?


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 4/12/2016 8:40 AM

By Terri Schaefer
ACHA Communications Manager

Nearly five years ago, on May 26, 2011, I had the pleasure of posting the very first volunteer-written ACHA Blog post, “Meeting My Own Personal Rock Star,” by Christy Sillman. Today, as I prepare for my final day as ACHA Communications Manager tomorrow, I’m posting my last blog. More than 600 posts later!

By ACHA on 4/8/2016 1:06 PM

By Breanna Roldan

As a child, I was under the impression that all kids who went to the doctor’s office had to have wires attached to them, have pictures taken of their hearts, and have to occasionally run on treadmills. Little did I know, this only happened to children with congenital heart defects—and I was one of those children. I didn’t quite understand the severity, long-term complications, and how having a defect would affect my entire life and future.

By ACHA on 4/7/2016 9:55 AM

By Robert Grabel

With my turn at the blog coming up, I realized I was tapped for ideas. That’s an interesting point in and of itself. As my fellow blogging colleagues might attest to, that first ACHA post can be pretty easy: You share your story (I did). The next one can be easy too: Talk about a post-surgery experience or realization (check).

But here I was three months post-surgery and I’m feeling like life is the way it was pre-surgery—but better!

By ACHA on 4/5/2016 1:54 PM

By Christy Sillman

[Editorial Note: I am writing this blog from my nursing perspective]

One of the biggest issues in CHD care that is often not discussed is the lack of an appropriate “medical home.” What is a medical home? It is a primary provider of care that will look at their patient in a holistic manner. Some patients feel more comfortable with their cardiologist acting as their primary care provider, but I’m here to advocate for a non-cardiologist primary provider.

By ACHA on 3/31/2016 11:22 AM

By Alissa Butterfass

My last post for the ACHA Blog was titled “Another New Year’s Cliché” and was about my resolution to (again!) try to improve my health through better eating, increased exercise and weight loss. Since it has been almost three months, I thought I’d share an update.

By ACHA on 3/29/2016 12:07 PM

By Kelly DiMaggio

I’m sure we have all heard the saying, “It takes a village to raise a child,” but I feel this rings particularly true for those of us with congenital heart disease and our respective family and friends.

My open heart surgeries were performed when I was three months old, two years old, and four years old. From the get-go, a strong community of loved ones surrounded me. My parent’s friends and my grandparent’s friends became regular visitors at the hospital and were by me just as much as my immediate family.

By ACHA on 3/25/2016 11:03 AM

By Misty Sharpe

There’s this wonderful group called the Zipper Sisters that I’m a member of on Facebook. It’s such a supportive place for all things CHD. One of the things I keep reading over and over again, however, are their interactions with people not familiar with CHD.

Some of these women have been told they are too young to have a heart condition. Now, down here in the South, people might think when they say that they’re being nice by making note of the fact that someone doesn’t look sick. But, for a CHDer, that’s about as bad as a “bless your heart.” Other members have received the occasional tips on how they can heal their heart through diet and exercise. Insert eye roll.

By ACHA on 3/22/2016 9:45 AM

By Stephanie Swirsky

Guilt is hard to let go. After Dan died, I couldn't stop thinking about all I could have done. I should have called his doctor when he was feeling strange a few months before he died. I should have known he was a month late for his annual exam. I should have known that something wasn't right.

By ACHA on 3/17/2016 1:35 PM

By Kathleen Hutchinson

I celebrated my 45th birthday last week. It’s been true for me—your mind never gets old, just your body. I feel great and I feel young as ever. 45 is the new 25, amirite?

I don’t feel old but 45 sure does SOUND old. I mean, it’s close to 50!! But, I digress…

30 years ago feels like yesterday. OK, maybe not yesterday, but last year? Today, I would like to take note of how far medical technology has come.

By ACHA on 3/10/2016 12:22 PM

By Paul Willgoss

We’re a funny bunch, us ACHDers/GUCHs (Grown Ups with Congenital Heart Disease)—we live in a world that can be very different from the world that others experience.

I’ve tried explaining this a couple of times, at conferences or at work—to give my colleagues some insight in to what come across as being inconsistent, moody, temperamental. Some of them get it, some not so much—so what do you think?