Recent Entries
You Are Not a Tree
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


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 12/28/2012 2:30 PM

By Ellen Greenberg

I believe the holidays do something to people. I think it makes us introspective. Such as, what can I change about myself, where did the year go, was I a good person? People begin to share and care. Is this for real or is it for show to make them feel better about themselves and end the year on a high note? I do not know; I cannot speak for others.

But I can speak for myself. I know that I have worked extremely hard and conscientiously at all of the above all year. However, I am closing in on a big educational accomplishment—achieving a Masters Degree in Early Childhood Education and Early Childhood Special Education.

By ACHA on 12/27/2012 3:08 PM

By Terri Schaefer
ACHA Communications Manager

As 2012 comes to an end, and the inevitable year-end numbers are crunched, we here at ACHA would like to say thank you to all of our bloggers—this year, more than 15 bloggers wrote more than 135 posts! Our bloggers are volunteers, and we could not be more appreciative of them being so giving of their time, but especially of them sharing about living their lives with CHD in such an open way.

By ACHA on 12/21/2012 11:05 AM

By Amy Verstappen
ACHA President/CEO

Every November, I plant an amaryllis. Amaryllis are magical plants whose giant flaming flowers arrive straight out of “Jack and the Beanstalk.” Plant the fist-sized bulb, and watch as the sprout peeks up, slowly growing into a stem wider than your thumb. In a few weeks, a bulging bloom appears and travels up more than a foot on the thick, green stalk. Finally, the flower opens in all its glory, a wonderful addition to the New Year.

As ACHA approaches its 15th birthday in October 2013, it strikes me that ACHA is like an amaryllis. It began with a sprout: A small group of passionate patients and family members, dedicated to improving the lives of congenital heart survivors.

By ACHA on 12/19/2012 1:35 PM

By Meghann Ackerman

It must be the time of year. Santa, Jack Frost, Frosty... winter is full of mascots and spokespeople, which reminded me of an earlier blog about who should be the face of congenital heart defects. And, I think I’ve got a candidate.

The Grinch!

By ACHA on 12/17/2012 1:49 PM

By Christy Sillman

You know that list they’re required to read to you before surgery? The one that states all the possible complications—I mostly remember death or dismemberment. I closed my ears, swallowed hard, and signed the paper with a silent prayer. I don’t, however, remember them saying “you could lose the ability to speak.”

Prior to my last surgery I was quite a chatty person. I used to talk all day and night to anyone who would listen. As a teenager my parents had to get me my own separate phone line and I practically had the phone glued to my ear. Then, at 17, the height of teenage talkativeness, I had my pulmonary valve replaced, and I woke up from open heart surgery without a voice.

By ACHA on 12/14/2012 12:53 PM

By Jon Ritchings, Jr.

Inspiration can mean different things to different people. It can be a picture, a movie, a poem, a person—well, really, anything that makes you want to do better. The only thing that can be said about inspiration is that everybody at some point needs it.

By ACHA on 12/12/2012 2:19 PM

By Clare Almand

The sternotomy scar gets all the attention, all the press. It cuts us right down middle, peeking over our shirts. But while it’s the most publicly known and associated with CHD, my zipper scar was not my first and it’s not my favorite. It’s one of many scars that make me the person that I am.

My first scar was for a coarctation of the aorta repair, which, as a newborn, was easier to fix by operating on my back instead of my front. It now takes over the upper left quadrant of my back, starting a couple inches to the left of my spine and below my left shoulder and following the curve of my shoulder blade. It ends a few inches under my arm.

By ACHA on 12/10/2012 3:47 PM

By Becca Atherton

Last night I went to my little sister's church choir concert and they sang this song at the end. I was so close to tears, as was my mom. I knew that I had to share this song with you all. It's called “Go Light Your World” by Chris Rice:

There is a candle in every soul
Some brightly burning, some dark and cold
There is a spirit who brings a fire
Ignites a candle, and makes his home

By ACHA on 12/7/2012 1:08 PM

By Stephie Goldfish

Compliance or non-compliance: that is the big C word. And compliance is a topic that needs to be addressed here, in all seriousness.

I never thought of myself as someone who doesn’t follow doctors’ orders. But at my last appointment I got the wakeup call of my life.

Over the past few months, thinking that I’d try to go natural and holistic, I tried going off some of my medicines. One of the reasons I did this is that one of the main medicines I take causes really bad heart burn or acid reflux. I had begun to feel too toxic with all of the medicine I was taking, and had thought my liver or kidneys were failing, not to mention my heart.

By ACHA on 12/5/2012 1:25 PM

By Alissa Butterfass

Last month, I had an MRI. It wasn’t my first, though I can’t remember if it was my second, third or fourth (ugh, aren’t I too young for a “senior moment?”). For those of you who have never had this test before, I’d describe it as “definitely not pleasant but definitely not as bad as you think it’s going to be.”

The most common question I’ve gotten about taking an MRI is, “Did you get claustrophobic?” Not really. Here’s my trick. I closed my eyes before going into the machine and did not open them—not even for a second—until after I was out of it. Between the movement of rolling into the MRI and the change from light to darkness that I could sense even with eyes shut tight, I knew exactly when I was in the machine. But I did not realize that the tube was just inches away from my face (or so I’ve been told) and did not get the panicked “get me outta here” feeling. Phew.