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 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.

By ACHA on 4/25/2014 12:04 PM

By Ellen Greenberg

Previously I blogged about how I felt “like the smelly girl on the playground” because the state of my healthcare had declined to such a point that doctors were turning me away for migraine headaches. They would see my incision and basically turn me away.

Unfortunately, my cardiac care was not what it used to be when I was in pediatrics. So this was an extra frustration, especially as I am the one paying the copays. I am also the one taking a total of 15 pills a day. I have what I refer to as my "granny bag of meds”—and that’s exactly what it is only because my grandmother is on a few of the same.

I am happy to report things have changed for the better!

By ACHA on 4/23/2014 12:08 PM

By Jon Ritchings, Jr.

I find little life lessons everywhere. After my last surgery I made the decision to change careers and go back to school. One of the classes I’m taking is an office keyboarding class. The teacher for that class is a runner and about two-thirds of the way through the semester she talked to us about what the rest of the semester would hold.

By ACHA on 4/21/2014 11:18 AM

By Steve Graham

Growing up with a congenital defect usually means that your parents serve as your healthcare advocate. Adults can also have help and support, but it is wise to be your own patient advocate. You should be familiar with your condition, keeping your medical records and making sure that you communicate with other healthcare professionals about your condition. As we age, there is a greater need for coordinated care with other medical specialists beyond congenital cardiology.

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.