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 5/29/2014 8:46 AM

By Michelle Browning Coughlin, JD, MSW

As part of my 37-37-37 challenge, I was honored to be invited to “virtually” participate in a 5k being held in another state to benefit congenital heart defects research and support. Running “virtually” meant that on the day of the race, I headed out to a local park wearing my race t-shirt, turned on my running app, and ran a 5K by myself. There was no “On Your Mark, Get Set, Go,” no cheering fans on the side of the road, and no loudspeaker announcements congratulating winners at the end of the race. It was just me, running alone.

And yet, every step of the way, I knew that—at least figuratively—so many people were running beside me.


By ACHA on 5/27/2014 2:53 PM

By Becca Atherton

After the frustrations in my last post, the plans to go to the new hospital were canceled because I got the stomach flu. This weekend I am headed up to California for a quick doctor appointment and to see my brother's girlfriend graduation! (Note: this post was written and submitted last week before the trip.) I don't expect too many tests or big changes to come from the appointment. I am meeting with my doctor to ask him questions about the upcoming heart cath that the new hospital I wrote about it my last post wants to do.

By ACHA on 5/23/2014 10:44 AM

By Lorelei Hill

Wow, it’s hard to believe that five months have passed since my last post. In March I submitted an entry about my life after transplant, but at the last minute the piece was pulled due to an emergency hospitalization. What had begun as a series of migraines rapidly grew into an abscess deep within the left hemisphere of my brain. The swelling inhibited my ability to communicate or even comprehend, rendering me comatose. This was brand new territory for my family as well as my doctors.

I’m not sure when exactly I woke up. When I did, I was in a new hospital, with three new medical teams! Too weak to read or write, I sat for the first few days and became a witness to my world. Time and space had no meaning. It didn’t take long for me to comprehend how much I had lost.

By ACHA on 5/21/2014 12:20 PM

By Brenna

I grew up "normal." What does that even mean? For my family, "that" meant "cautiously optimistic." That was the way my family dealt with my heart condition: We didn't know what to expect, so why dwell?

The first two years of my life were hard on everybody, from what I was told. My father was scolded at the market for having a blue baby who was "obviously cold." My brother spent a lot of time with our amazing grandparents. And my mother, who didn't even want children until meeting my father, couldn't do anything but watch and hold on. So once it was done—after all the surgeries, tubes, and support groups—we were a "normal" family.

By ACHA on 5/19/2014 12:36 PM

By Paul Willgoss

The running magazines in the U.K. have two approaches to advising runners after they’ve done a marathon: 1) You’ve done it, now go do something else (probably shorter), and 2) You’ve done it, now get faster!

I’m in neither. I’m this one: I’ve done it, after six long years I’ve done the London Marathon, I’ve smashed my personal best (PB) by 12 minutes, I’ve got the medal, I’ve got the t-shirt and I know what's coming next…

By ACHA on 5/15/2014 2:00 PM

By Meghann Ackerman

Victor has never been one to shy away from going topless. He tends to run hot so, unless required, he rarely has a shirt on in the summer. Not wearing a shirt means his surgical scar is visible, and that tends to draw in the curious. Victor generally doesn’t mind answering a few questions about his scar, but heart surgery isn’t exactly what you want to be thinking about during a day at the beach either.

By ACHA on 5/12/2014 1:23 PM

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

Jessica Rice was born in March of 1987, and her story began the same way as it does for many in the CHD community, including me: Soon after birth, she started turning blue. The doctors did an echocardiogram and based on their initial testing they diagnosed Jessica with pulmonary hypertension, but did not discover her congenital heart defect.

By ACHA on 5/9/2014 9:24 AM

By Katherine Buchanan

I biked up the steepest hill on campus yesterday morning after leaving my last fitness class of the semester. After my open heart surgery this Christmas I decided to come back to school and take a personal fitness course, hoping to build my strength and endurance to better than it was before the operation.

Our first class was a little over a month and a half after my surgery, and so my abilities were pretty limited. I was slower than my classmates, and while I did feel more energized than I had first semester, I was still sluggish and tired. However, as time distanced me from the surgery, I gained more energy and ability.

By ACHA on 5/5/2014 11:59 AM

By James Bachenheimer

Being born with a single ventricle, my life was filled with challenges before I even knew how to hold my head up. By the time I was five years old I had already undergone four open heart operations, so I never really knew what it was like to be a healthy, active boy. I was Jimmy, the kid with the bad heart, the kid who you couldn't tackle while playing football, the kid who wore heart monitors to school—my health would always be what defined my life.

I reached adulthood and already had another operation under my belt (I was 11), the only one I truly remember before my 20s. I honestly never thought I would live to 30 but here I was about to turn 29. I was feeling pretty decent. On my 29th birthday I walked into a bar and sat down and chatted with a pretty blonde bartender.

By ACHA on 4/28/2014 11:25 AM

By Beth Adams

Much of my day-to-day work routine involves seeing patients in our outpatient office suites. Interestingly, and purely by chance, the building containing the pediatric cardiology clinic and the building that houses the adult congenital heart disease clinic happen to be directly across from one another—across the parking lot, as I like to say.

When is this important? Well, when it comes to transition, this may make all the difference in the world.