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 8/27/2014 11:00 AM

By Jennifer Gooden

Last month my husband and I went to Paris as a last hoorah before we would see how the rest of my cardiac year played out. The day we were flying out I was feeling particularly icky with nausea and being exhausted and I was glad to have a few travel “tricks” up my sleeve. So I decided to share a few of them I’ve found to be successful to hopefully ease your end-of-the-summer travels!

By ACHA on 8/22/2014 1:25 PM

By Paul Willgoss

One of the delights of the international GUCH/ACHD community is that in this age of social media an idea can be communicated from New Zealand to Norway, with sidesteps to the U.K. and Finland, in the blink of an eye.

The New Zealand congenital heart charity Heart Kids NZ launched a campaign to highlight the facts that many of us have scars, some more than one and that it is fine to show them off.

By ACHA on 8/21/2014 8:30 AM

By Kim Russell

While recently visiting with a social worker at an ACHD clinic, I found out that there are still adult CHDers who have never met anyone else with CHD. I remember that feeling. It wasn’t one that was talked about or that I verbalized, but it was one that was forever in the back of my mind.

“Am I the only one going through this?” “Wouldn’t it be nice to have someone to talk to who understands what this is like?”

By ACHA on 8/18/2014 3:53 PM

By Katherine Buchanan

Growing up in a household where exposure to the world’s diverse and incredible cultures was a priority, exploring the world has been a consistent dream on my horizon. After trips to Belize and Costa Rica, as well as an extensive number of classes in French and Spanish, my passion for world travel has grown and evolved.

Yet, after my diagnosis with congenital heart disease, worries about how my health would factor into this dream began to creep into my mind. With open heart surgery this past December, I was worried about my summer plans to travel to Europe and future dreams to travel to more remote and physically demanding places in the world. How would it feel to fly in an airplane? What if I had an emergency while abroad? Could my heart keep me from participating fully in the abroad experience?

By ACHA on 8/15/2014 12:52 PM

By Jorie Malone

I am the only person I know with Ebstein’s anomaly. In fact, I am the only person I know with congenital heart disease. For the longest time, this didn’t bother me. Growing up, I was fortunate to run around like any other kid. Having CHD was something I seldom thought about, and the reminder usually came every couple years when I had a cardiologist appointment.

Today, my circumstances have changed and I am very interested in making connections with people who have CHD. For that reason, I am excited to attend ACHA’s National Conference in Chicago for the first time, and it couldn’t have come to a better place at a more perfect time!

By ACHA on 8/13/2014 9:13 AM

By Christy Sillman

Sleep is incredibly important to our health. Without a solid 7-10 hours of sleep a night we’re cheating our bodies of the renewal process necessary to keep our body in an optimal state. Many CHDers tell me that they struggle nightly with getting their Zzzs.

There can many factors as to why we can have trouble sleeping—orthopnea (shortness of breath when lying flat), acute or chronic pain (from surgeries), anxiety/depression/PTSD, obstructive sleep apnea, and certain medications can inhibit melatonin production—the natural chemical that helps us sleep.

By ACHA on 8/7/2014 12:43 PM

By Jon Ritchings, Jr.

I know this is a website for adults with congenital heart defects, but I read something over the weekend on my Facebook feed that made me angrier than I have been in a long time—a web link to a story about a baby who was barely two pounds that had recently had balloon valvuloplasty to fix pulmonary stenosis.

I know what you’re thinking, how can this guy be mad about a little girl who had lifesaving surgery? Let me tell you, when I started reading I was really psyched to hear about how well this little girl and her incredible surgeon did.

By ACHA on 8/5/2014 9:40 AM

By Lorelei Hill

Last month, my husband Mike and I made our customary drive into the heart of Toronto to attend a 15-minute doctor’s appointment. I am sure that every CHD patient can relate to the long process of visiting their cardiologist. More often than not, it’s a hurry-up-and-wait game that involves blood tests, X-rays or ECGs and finally, what we came for—the face-to-face meeting with the cardiologist.

I hate to admit this, but over the years, these hospital visits have become such a habit that now, on those rare appointments where there are no tests, I almost feel let down. I mean really, what’s the point of travelling all that way just to see the doctor?

By ACHA on 7/29/2014 9:32 AM

By Kim Edgren

Back in grade school, pre-Rastelli procedure, I had a gym teacher say to me as I stood on the sidelines, “You look healthy enough to play!” The purple lips and purple fingernails along with my health record should've told her otherwise but yet, to her, I looked healthy enough to participate in her class.

The comment has stuck with me, and to this day I still struggle with looking like I should be able to be athletic and push myself more. And even in full congestive heart failure, I struggled with accepting the “I can’t” and still went with the “I’ll try.”

By ACHA on 7/25/2014 12:37 PM

By Beth Adams, DO

… as the morning unfolds, the patients who sticks in my mind is the youngest of the day, a 9-day-old baby with a very thick heart.

Anna (not her real name) was supposed to be a normal, healthy baby, after a normal, healthy pregnancy. But she’s not. Before going home from the hospital, one of her doctors heard a heart murmur, and her problem was discovered. No one teaches doctors how to give bad news—at least, no one did when I was training. You sort of figure it out as you go along, by watching what works, what doesn’t work, and trying to read people as you go along.