Recent Entries
Remembering the Caregiver’s Well-Being
What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
Thanking Our CHD Doctors
Fussing Over Your Features
Health Above All
The Long and Lonely Miles
The Waiting Game


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: ACHA Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 4/16/2014 12:52 PM

By Yvonne Hall

Since my daughter’s transplant two years ago, each day has been one of relief and gratitude. Lorie’s recovery has been truly miraculous, even surprising her medical teams. Admittedly, I was becoming complacent. Then without warning, the proverbial “other shoe fell.”

How could she possibly be undergoing brain surgery and what were we doing back in the ICU waiting room? This past month has been a blur of doctors, hospitals, waiting rooms and travel. Lorie has contracted a bacterial infection in her brain diagnosed by a rapidly-growing abscess. Infection is the enemy of transplant patients, but a brain infection was almost beyond the comprehension of her family, as well as her transplant team.

By ACHA on 4/14/2014 1:46 PM

By Stephie Goldfish

Have you ever carried the burden that we are the forgotten Xs who will be Xd off and signed away? Some questions going through my mind lately are: What would you do if you found yourself in a precarious situation where you became either homeless or needing assistance with day-to-day living? Have you thought of your long-term care needs? Will you go to an independent living setting or decide to be in a nursing facility?

A person I recently met made me begin to think of the concept: "What's the patient's name?"

By ACHA on 4/10/2014 9:55 AM

By Kim Russell

Over the past few years, I have had opportunity to visit with many CHD parents across the United States. Listening to their stories, triumphs and challenges has made me realize that their work is much like that of a sculpting artist.

They find out their child has CHD, which is something they know nothing about—they have been given a precious amount of molding clay. So the first thing they do is gather all the tools and information they will need to form this precious child into a strong, independent adult. Then they begin their work of molding, so that each curve and edge is just the right shape.

By ACHA on 4/8/2014 8:49 AM

By Alissa Butterfass

It all started with a simple question to my cardiologist: “Do you think I could train for a 5K run?”

I have always been a walker. Come the warmer months, I lace up my sneakers and walk around the park or the neighborhood. When I am being good about my fitness, in colder months I will hop on an elliptical. But walking always felt kind of “lame” and I thought that if my heart could withstand the exertion and I could build up to a point where I didn’t get out of breath so quickly, I would enjoy running much more than walking. So on my most recent visit to the cardiologist I posed the question.

By ACHA on 4/3/2014 2:31 PM

By Jennifer Gooden

I was hospitalized for the first time in 20 years last month. It was a pretty scary situation but when I look back, I am thankful for many things. I always think that things are what you make them. Here is why I am thankful for this little “hiccup” in my health:

I am thankful that I was at work—a children’s hospital’s cardiac ICU—when my heart started to act up. I sat down to do some charting on my patient and I felt like someone dropped a blow torch on my chest and that I was going to vomit. When the pain let up a little I noted that my heart was racing.

By ACHA on 3/31/2014 1:14 PM

By Paula Miller
ACHA Member Services Manager

This past weekend I had the privilege of representing ACHA at meetings of congenital heart healthcare providers that were held during the American College of Cardiology (ACC) Scientific Sessions in Washington, D.C. I am in awe of all that this amazing group of doctors, both pediatric and adult congenital cardiologists, do to make sure we, congenital heart patients, get what we deserve – the very best care.

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 Isaacson

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.