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 5/29/2012 10:16 AM

By Ken Woodhouse

I consider myself very fortunate to be an adult with a CHD who generally does not have to think about or actively manage his condition on a day-to-day basis. While I’m certainly always aware of it, my personal experience with CHD has been much less traumatic or severe than many of my peers. In part because of this, I feel it is especially important for me to be more involved in the cause. And it has led me to become an active volunteer with ACHA—as a blogger, as an advocate, and now as a runner (which has included being involved in helping to create ACHA’s very first endurance event team—Captain Cardio’s Pace Makers—to raise awareness for the cause and money for ACHA).

By ACHA on 5/25/2012 11:10 AM

By Jennifer Gooden

Many times in my life I have been faced with things I cannot or should not do. I am faced with what people think I can, cannot and should not do. I have come to realize that people who know about my CHD expect me to be a bit more slow, more tired and a little less “able.” And I will admit that sometimes I expect the exact same. I am a bit more slow, I am a bit more tired and sometimes I am a little less able. Because let’s face it, us CHDers—we’ve got problems.

But I recently stumbled upon this quote: “Happiness is not the absence of problems but the ability to deal with them.” I have come to realize that attitude is everything. I am my biggest barrier. Not my CHD. If I put my mind—and broken heart—into something I can usually achieve my goals. Sometimes I have to modify the way I get to my goals, but eventually I get there. And reaching my goals is much sweeter because I do have the ability to deal with those problems.

By ACHA on 5/24/2012 10:17 AM

By Clare Almand

When I was 21, I got an ICD as mostly a preventive measure. After an esophageal echo proved I was susceptible to ventricular tachycardia, I discovered that my brand new pacemaker of one year would be replaced with a bigger, bulkier device capable of electrocuting me. I was shocked (I had to say it).

The larger ICD was located slightly lower than my pacemaker, so that combination took some getting used to. But after the normal recovery period, life went on as usual. I wasn’t really afraid. Since I never experienced a long run of V-tach before, I didn’t dwell on the possibility of my ICD going off.

By ACHA on 5/23/2012 9:58 AM

By Paul Willgoss

Well, sort of (I’ll explain the reference at the end, bear with me)…

May is always a busy month, none more so than this year.

Marathons to run, awareness-raising to do, politicians to chat up (and not in a lusty way), nationwide reviews of services to participate in, more runs and walks to do… and the day job, and the arts course I’m doing for fun.

By ACHA on 5/21/2012 11:03 AM

By Becca Atherton

This past Tuesday I went to speak to a local sixth grade elementary class about bullying. I talked about how people would call me lazy for using the elevator instead of the stairs, how people would call me ugly because of my scar, and how kids in middle school locked me in a closet and refused to give me my medication. I wanted them to know that bullying is never OK and that before they made assumptions based off of how people look, they need to take a step back and realize that there is more to someone than what meets the eye.

By ACHA on 5/18/2012 10:37 AM

By Lorelei Hill

Before I begin, I would like to take the time to thank those who commented on my last entry. Your interest in my progress is heartwarming. It was my ninth week in the city when the call for my new heart came, and so, it only seems appropriate that I am writing this entry during my ninth week post-transplant.

On the evening of March 9th the call came. Just hours later, I was in the operating room. Life as I had previously known it was over. Little did I realize, the life my family had previously known, at least for the time being, had also come to an end.

By ACHA on 5/16/2012 10:48 AM

By Kim Edgren

Back in 2008, I headed off to Philadelphia to the ACHA National Conference with my partner Karen and our good friend Joan. This was my first conference and I knew a few minutes in it would not be my last. We had a great time, between the silent auction, the gala, and meeting new people both at the workshops and after. On the drive home we talked about wanting to do more—raise some money for this great organization. Maybe a big fundraising party or walk.

And then we got home. Life went on. Nothing got planned.

By ACHA on 5/14/2012 1:10 PM

By Jon Ritchings, Jr.

I'm kind of a silly guy in that I live my life by moments. I do my best to live my life in the moment, trying to notice everything that is happening around me. It is how I live my life these days. I no longer concern myself with things I have done in the past. Many of those things I can't do anymore and dwelling on that accomplishes nothing except developing resentment for what I have lost.

By ACHA on 5/11/2012 9:10 AM

By Abi and Livi

Note: Todays’ blog post is written by two of regular ACHA blogger Kim Edgren’s daughters. As Kim says, “I asked them to write a little something about having a mom with CHD and the post is their response.”

By ACHA on 5/10/2012 12:53 PM

By Alissa Butterfass

In honor of Mother’s Day, I interviewed my mother Nora Wiznitzer Stonehill about being a parent of a child with a CHD. Below are condensed and edited highlights of the conversation. Note: I am not a professional transcriber so I hope this captures my mother’s intent, if not her actual words. Many thanks to my mom for her honesty and candor during our conversation.