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 9/27/2013 1:52 PM

By Jon Ritchings, Jr.

Last night after a day of 16 hours spent on my feet, I went to bed and lo and behold, for the first time in more than a year I had some edema in my left ankle. I tell you this because I know exactly why it happened.

Over the summer I've put on about 10 pounds. I haven't been exercising regularly or eating very well. Seems simple, but I think it can happen to anybody. You see, I lost my focus on my health. Often in today's world of go-go-go, we lose focus on the things important to us. It could be anything—family, success, or in my case, health.

By ACHA on 9/25/2013 11:27 AM

By Yvonne Hall

A few months ago I was discussing with an author friend how I couldn’t seem to get to my writing. I didn’t know where to go with it. She immediately asked me one simple question that got the creative juices flowing again.

“What ten pieces of advice you would offer a parent of a congenital heart patient?” She then followed with, “That will give you the first ten chapters of your book.”

By ACHA on 9/23/2013 1:54 PM

By Alissa Butterfass

I’ve written before about speaking with my kids about my heart condition, but as a parent of young kids it is really hard to discern what my 4 ½- and 7 ½-year-old truly understand about it. Or about my younger son’s birth through gestational surrogacy (which I wrote about here and here). My husband and I have generally taken the approach of just incorporating the topics when appropriate—not to hide anything but not to sit the kids down and have “the talk” either.

By ACHA on 9/20/2013 9:46 AM

By Michael Pernick

This blog series will feature a story involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association. The names of the parties involved in this matter have been altered.

Medical malpractice is a controversial issue. I’m not going to wade into this debate—instead, I will share two stories (in two separate blog posts) involving children born with CHD, each of which resulted in a medical malpractice lawsuit. My goal is not to pass judgment on whether these cases where rightly or wrongly decided, but instead use these cases to help answer a simple question: What does it generally take to win a malpractice suit?

By ACHA on 9/19/2013 9:19 AM

By Stephie Goldfish

I wish this blog could be a continuation of my last blog, a follow-up story of where I was at just a month ago, where I wrote about getting to a new team of doctors and making progress in some of my personal goals. I wish I could say I was a little more stable than I was a month ago, that I finished the pastel portraiture I promised my poetess friend and her twin daughters.

It’s not like I’m telling these big fat lies, intentionally misleading everyone about what I’m doing, what I intend on doing. It’s not that I don’t know what I’m talking about. Honestly, I don’t want to come off as some protagonist BS artist confusing the truth, nor bringing about some perversion of the truth.

By ACHA on 9/16/2013 12:28 PM

By Meghann Ackerman

Having a doctor who communicates well is a huge help in managing your health. But, it’s when the doctor has nothing to say that I’m the happiest.

By ACHA on 9/12/2013 1:31 PM

By Clare Almand

Every Sunday, a blog called PostSecret posts the images of several postcards or pictures containing anonymous secrets from around the world. I like to check every Sunday and save the ones that I like or that I relate to. Not too long ago, a secret was written on a St. Jude’s Children’s Research Hospital notepad that read: “I wonder what wealthy parents of healthy children worry about.” Like I imagine many of you will, I connected with it immediately. I don’t quite know from personal experience, but I know two pretty awesome parents who know this feeling all too well.

By ACHA on 9/10/2013 1:50 PM

By Paul Willgoss

I got my annual cardiac check-up letter this week, and as I suspected I’ve been given a new cardiologist. My old one is retiring—and let’s face it, I’m not known for giving cardiologists an easy time!

So new cardiologist, new relationship…

I’m fortunate that with my advocacy roles I know most of the ACHD specialists in the U.K., so I know he’s an expert in us. First hurdle over, the rest plays out like internet dating. At least it can seem that way.

By ACHA on 9/5/2013 1:16 PM

By Jennifer Gooden

It's always nice to have work buddy—someone who has your back during a bad day, who understands your stressors, and shares in your accomplishments. You can also talk to your work buddy about life outside of the office, or in my case, my unit. The right work buddy can be more like a work wife or hubby.

The large majority of nurses are female. And I am lucky to have a cool work wife. I hate to brag but my work wife—Tracy—is super special! Not only do we share a bond at work, but we also share a heart bond. She is an ACHD warrior, too.

By ACHA on 9/3/2013 12:10 PM

By Kim Edgren

A few weeks ago I went to Purgatory Chasm for a hike with my sister and her family. One thing I love about my current state of “heart healthy” is doing things like this—being out in nature, enjoying the elements. As we walked, we talked about going to the Grand Canyon. I am all for the concept of visiting the canyon, just not so much a mule ride.

So I spent the rest of the hike adamantly proclaiming I could hike down the canyon (no, I am not so naive to think I can hike up—still working out that plan!). Now, mind you, I know I am a heart patient, but still, I am all for the hike down one of the seven natural wonders of the world!