Recent Entries
Writing About My CHD Journey
Embracing the Imperfections
“Commit to Doing What You Love.”
A Life-Changing Event
The Aging CHD Patient: The Facts, Part 2
The Aging CHD Patient: The Facts, Part 1
When Your Doctor Retires
On Bravery and Strength
The Best Village Ever
Humor Makes It Better


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 6/30/2015 2:27 PM

By Kelly Deeny

I’ve been absent from the ACHA Blog for a bit, and there’s a reason for it: I ran out of things to “say.” Recently, every time I sat down to write a new entry and join my fellow ACHA bloggers in chronicling our CHD journeys, my mind went blank.

“What haven’t I written about yet?” I wondered. “What new perspective, insight, advice, or milestone do I have to share?” I felt like a broken record and all the drafts seemed inconsequential compared to those of other CHD survivors.

By ACHA on 6/25/2015 2:10 PM

By Misty Sharpe

On May 16, Nashville held its first-ever Congenital Heart Walk and as I sit here getting ready to start planning for 2016, I find myself reflecting back on this year’s event. I checked the weather app on my phone all week because of the forecast calling for severe storms. In my mind, I pictured this perfect event with sunny weather, news media, record attendance and a smooth, complication-free program and walk.

Want to know something? None of that happened. What did happen that day reminded me of a very valuable lesson, though.

By ACHA on 6/23/2015 2:25 PM

By Lorelei Hill

This is a phrase I often use with my children. My 13-year-old son Riley tells me that he loves to play the drums, but the truth is, the thing he has committed to is playing Clash of Clans on the computer! My 12-year-old daughter Kate, on the other hand, tells me that she loves to draw. After an artist friend convinced her to let her light shine, Kate committed herself to being the best cartoon pet artist she can be. Evidence of this adorns my home and can be found throughout my office. Her commitment is so strong that she often neglects her schoolwork and house chores!

Despite all that, I give her credit. It takes a lot of dedication to truly commit to doing what you love. Our society seems to be moving so fast these days that most people, myself included, have many things we’d love to do, with little time to actually do them.

By ACHA on 6/17/2015 12:18 PM

By Kim Russell

In 2004 my CHD cardiologist finally talked me into attending the first ACHA conference. At the same time, my local cardiologist got me to agree to volunteer at Children’s Healthcare of Atlanta’s Camp Braveheart, a camp for children ages 7-18 with CHD. Both events completely changed my life forever.

By ACHA on 6/12/2015 10:11 AM

By Paula Miller
ACHA Member Outreach Manager

As I wrote in the first part of this post, talking about heart failure brings up a topic that is seldom discussed in the ACHD world—end of life (EOL) care. Do ACHD patients want to discuss EOL? According to Dr. James Downar, they do.

By ACHA on 6/10/2015 2:02 PM

By Paula Miller
ACHA Member Outreach Manager

I was fortunate enough to be among hundreds of ACHD specialists, nurses and advocates who gathered in Toronto last week for the 25th International Symposium on Adult Congenital Heart Disease. Of particular interest was the one-day symposium on heart failure that covered all aspects of this evolving challenge in the rapidly-growing ACHD population.

Are you aware that as the CHD population graciously ages into adulthood, heart failure is the leading cause of cardiovascular death in adults with CHD?

By ACHA on 6/4/2015 1:40 PM

By Jennifer Gooden

I only have one more appointment with my ACHD cardiologist until she retires in July. My current cardiologist, we’ll call her Dr. L, is only my second cardiologist—ever. And my first ACHD cardiologist. I have been seeing her since I was about 19 years old. She is not only an amazing doctor—how many docs give you their cell phone number?—but she is a pretty cool person, too.

But while I am one of her biggest fans now, we have not always seen eye to eye.

By ACHA on 6/2/2015 10:31 AM

By Alissa Butterfass

There are two words I often hear in connection with living with my CHD, and more recently, when I had uterine cancer last year: “Brave” and “Strong.” I know my friends and family intend these words as compliments and as a way to encourage me when facing a challenging situation. But, I must admit, they make me cringe.

By ACHA on 5/28/2015 9:51 AM

By Kim Edgren

Gratitude: “the the quality of being thankful; readiness to show appreciation for and to return kindness.”

These past couple months I have felt a lot of gratitude for all the support our team received in raising money for the Boston Congenital Heart Walk and for the help I receive from my family and friends in planning for, working towards and showing up on walk day. It takes a village and I have the best village ever.

By ACHA on 5/26/2015 1:57 PM

By Yvonne Hall

I don’t know how you do it! That is without doubt the most common phrase I’ve heard over five decades of parenting my CHD daughter. It probably sounds familiar and if you’re also a parent of a child with CHD you’ve thought as I have: “What are my options? I just do it.”

Digging deeper, I realize a key element to navigating tough times was our humor. Norman Cousins got it right by deciding to laugh his way to recovery. Although not a scientifically proven antidote, he survived for decades beyond his “expiry date”—proof enough for me.