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 3/28/2014 12:49 PM

By Kelly Deeny

I don't mind the scar down my chest. In fact, I accept it as part of what makes me unique. It's a reminder to me on stressful days of how much strength and determination exists within. Yes, it mirrors a heart that's endured physical pain, but the healed wound also signifies an emotional and spiritual journey that's had its share of challenges.

By ACHA on 3/25/2014 12:43 PM

By Brenna

Last night as I tried to pull my sleepy boyfriend off the couch, I realized that I might need to do more weight training. The fact that I can even consider lifting weights is a far cry from where I once was. If open heart surgery has taught me anything, it’s that the numbers on the scale don’t matter; being as healthy as possible is most important and should never be taken for granted.

After my first pacemaker implant, I was told that I would need a Fontan revision open heart surgery. I was 23 years old, didn’t even remember my first open heart surgery, and was deeply unsettled by this news.

By ACHA on 3/20/2014 11:53 AM

By Paul Willgoss

It’s getting close to the culmination of six years of desire, frustration and agonising waits…

The London Marathon decides its entry on the basis of a ballot (at least for ordinary mortals), and after six years I’m finally in—which has given me a refocus on training plan-based running and a desire to test myself and to do it right in ways that some of my running exploits don’t always allow.

By ACHA on 3/18/2014 1:07 PM

By Becca Atherton

A few weeks ago we got the good news that a hospital – although far from home – has agreed to evaluate me for a heart-lung transplant and see if they think they would be able to transplant me when the time comes. However, we haven't really heard from them for a few weeks now since the first time they called to talk to me about it.

At first we were told that the hospital was in-network with my insurance but now we are being told they still have to work things out with the insurance. My doctors in California gave the contact person my parent’s cell phone number as well as the home phone, but there was still an issue with a missed call left on our home phone.

By ACHA on 3/13/2014 10:55 AM

By Katherine Buchanan

When I found out I was going to have open heart surgery to repair my leaking mitral valve, I was terrified. Like others in the congenital heart disease community, I grew up thinking I was cured of my original defects—the cleft in my mitral valve and atrial septal defect—and had never heard the term "congenital heart disease" applied to me before.

When the doctors told me that this term was now part of my life and surgery was necessary within the year, I was overcome with fear. Before I knew of the heart problem I lived under the notion that I had the potential to live my life to the fullest—whether that be through my singing, studies or dreams of world travel. I envisioned an exciting future with many adventures ahead, but the news of open heart surgery tore at the foundations of my dreams.

By ACHA on 3/11/2014 1:30 PM

By Kim Edgren

What an amazing trip to Washington, D.C., in late February to advocate on behalf of all affected by CHD! As the lone Massachusetts rep, I was joined by ACHA’s own Terri! It was a treat to spend the day with her and the other ACHA folks as they took action. It is a true testament to the dedication of those behind the doings of ACHA. From start to finish it was a great experience that had tremendous impact on the decision makers of D.C.

As my fellow blogger and advocate Michael so eloquently described in his post, The One-Two Punch, we had some specific “asks” of our representatives and senators: Support CHD surveillance by appropriating $7 million to the CDC, continue to fund NIH research, and for our representatives, to join our Congenital Heart Caucus. Those are the facts – the impact comes with the stories.

By ACHA on 3/6/2014 1:07 PM

By Michael Pernick

Last week, I joined advocates from across the country in Washington, D.C., to meet with our elected leaders and their staffs and urge them to support Americans living with congenital heart disease (CHD). What we were asking for wasn’t unreasonable: We want the government to fully fund a Centers for Disease Control and Prevention (CDC) surveillance program. Millions of Americans are living with CHD; in fact, it is the most common birth defect. Nevertheless, the vast majority of adults with CHD – more than 90% – aren’t getting the care they need. In fact, we don’t even know who most of those people are, and we don’t have data on what happens to adults as they age out of the pediatric system.

By ACHA on 3/4/2014 10:38 AM

By Michelle Browning Coughlin, JD, MSW

“Breathe in. Breathe out. Hold your breath.”

The computerized female voice with a semi-British accent filled the MRI chamber, while the clanking and the whirring of the machine sounded all around me, muffled only slightly by the ear plugs the technicians had given me before I laid down on the table. My eyes were squeezed shut, hopeful to avoid a fit of claustrophobic panic, while my arms were held tightly in place by the straps that also held the X-ray plate against my chest. My lungs were silent, still holding my breath.


I inhaled as much as the anxiety in my chest would allow, preparing for the next bout of breath holding. The back of my mind raced with fear and with questions, while the front of my mind waited for instructions.

By ACHA on 2/24/2014 2:02 PM

By Meghann Ackerman

A few weeks ago, a friend told me she liked my blog posts and asked when the next was coming out. I told her when I was on the schedule, but admitted that I had no idea what I was going to write about. Nothing new is going on with Victor’s heart and unless there’s an impending doctor’s appointment (or blog deadline), it’s not something that comes up much in our daily lives.

“So write about that,” she said.

By ACHA on 2/21/2014 9:12 AM

By Christy Sillman

I thought pregnancy/labor was going to be the hardest part of being a mother with congenital heart disease, and let me tell you, it wasn’t exactly a walk in the park—but what I’ve found most surprising is how challenging motherhood itself would be in the face of my CHD.

Regardless of how you become a parent – old fashioned baby-making vs. surrogacy vs. adoption – you never really know what you’re getting into until you’re there. It’s a club only parents understand. I thought working 12-hour night shifts in a busy pediatric ICU was motherhood “training,” but little did I know that I’d later view those 12-hour shifts as my mommy breaks!