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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
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Disclaimer

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.

By ACHA on 4/12/2016 8:40 AM

By Terri Schaefer
ACHA Communications Manager

Nearly five years ago, on May 26, 2011, I had the pleasure of posting the very first volunteer-written ACHA Blog post, “Meeting My Own Personal Rock Star,” by Christy Sillman. Today, as I prepare for my final day as ACHA Communications Manager tomorrow, I’m posting my last blog. More than 600 posts later!

By ACHA on 10/22/2015 2:56 PM

By Paula Miller
ACHA Member Outreach Manager

I’m excited to share that the ACHA/ISACHD Adult Congenital Heart Disease (ACHD) Clinic Directory has been updated with full 2014 data! We’ve also added several new ACHD programs to our listings. All participants completed the 2014 ACHA/ISACHD ACHD clinic survey, providing us with the most recently available full years’ worth of data.

By ACHA on 8/27/2015 10:55 AM

By Terri Schaefer
ACHA Communications Manager

Have you seen our two new ACHA videos we recently shared via social media and our monthly e-newsletter?

By ACHA on 8/18/2015 12:24 PM

By Paula Miller
ACHA Member Outreach Manager

Over the past year, as a representative of ACHA, I have had the privilege of sitting on the Patient Engagement Council (PEC) of the Patient Outcomes Research to Advance Learning (PORTAL) clinical data research network, which is funded by the Patient-Centered Outcomes Research Institute (PCORI). There are 11 research centers in this network that is made up of four health delivery systems: Kaiser Permanente, Group Health Cooperative, Health Partners and Denver Health.

By ACHA on 6/12/2015 10:11 AM

By Paula Miller
ACHA Member Outreach Manager

As I wrote in the first part of this post, talking about heart failure brings up a topic that is seldom discussed in the ACHD world—end of life (EOL) care. Do ACHD patients want to discuss EOL? According to Dr. James Downar, they do.

By ACHA on 6/10/2015 2:02 PM

By Paula Miller
ACHA Member Outreach Manager

I was fortunate enough to be among hundreds of ACHD specialists, nurses and advocates who gathered in Toronto last week for the 25th International Symposium on Adult Congenital Heart Disease. Of particular interest was the one-day symposium on heart failure that covered all aspects of this evolving challenge in the rapidly-growing ACHD population.

Are you aware that as the CHD population graciously ages into adulthood, heart failure is the leading cause of cardiovascular death in adults with CHD?

By ACHA on 7/11/2014 2:50 PM

By the ACHA National Conference Planning Team

There are less than two months until our 7th National Conference in Chicago! We hope you will join us on September 5-7, and here's our top 5 reasons why:

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 10/30/2013 2:31 PM

By Paula Miller
ACHA Member Services Manager

In reality, the advent of the internet and what I recall as an AOL chat room was my initial introduction to ACHA. It was in late 1998 or 1999 and like so many adults living with congenital heart disease (CHD), I was looking for someone like myself. I knew I couldn’t be the only one alive who was born with the birth defect. There had to be someone out there who understood me.

Two of the young people I “chatted” with were Karen Klein McNulty and Anthony Cordaro, Jr. They, along with Bonnie Paulsen, Kimberly Ochs, Mary Kay Klein (Karen’s mother), and Tony Cordaro (Anthony’s dad), were the founding board members of ACHA. What a vision they had! And what a turn my life was about to take!

By ACHA on 7/2/2013 10:10 AM

By Amy Basken
ACHA Public Policy Manager

Last night I bought into the latest social media sensation—ice cream bread.

It is so easy, it’s ridiculous. One cup ice cream and ¾ cup self-rising flour. Well, navigating the grocery store to find the self-rising flour was not so easy. But mixing the two together, plopping it in a mini bread pan and baking? Piece of cake—or bread.

By ACHA on 5/24/2013 9:24 AM

By Amy Basken
ACHA Public Policy Manager

When I started in advocacy, it was shortly after Nicholas was born with a severe heart defect. I had felt blindsided by our experience and wanted to make a difference. Then I was invited to Washington, D.C., to tell my story.

What an addicting experience.

To think that I was in the nation’s Capitol—talking to someone who can change things, make them better. To think that my story could help.

By ACHA on 2/11/2013 1:23 PM

By Paula Miller
ACHA Member Services Manager

Valentine’s Day is a day for relationships—most often with people you love, like your parents, your significant other, your siblings, and your friends. It’s a day of chocolates and flowers. Yet for those of us with CHD, building relationships outside of those we naturally love is an important aspect of our life.

Who else is as important as those I love, you may ask? As an adult with CHD, I think my relationship with my ACHD healthcare team and with ACHA are—but like many, these are relationships I sometimes take for granted and don’t always work to maintain.

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 11/15/2012 10:29 AM

By Ann Gianola
ACHA Research Manager

It was still dark when I laced up my shoes for an early morning run. I’d charted my route along the Schuylkill River, hoping to get in eight quick and quiet miles before the rest of the city woke up. See, I’m training for a marathon and on that morning’s run (one of dozens of morning runs), I realized that conducting research is much like training for a marathon. Conducting research is hard, sometimes a constant uphill battle, and there are always bumps or curves in the road. Rarely do we get to sprint to the finish line when conducting research.

By ACHA on 10/10/2012 11:42 AM

By Terri Schaefer
ACHA Communications Manager

As I posted Monday’s blog, I couldn’t believe it when I glanced at the archived website link, which indicated that it was the 199th post to the ACHA Blog. Wow! It has been nearly a year and a half since the blog launched in May 2011, and in that time ACHA has been so proud and honored to share so many personal stories and experiences with the CHD community through this avenue.

By ACHA on 6/12/2012 9:35 AM

By Ann Gianola
ACHA Research Manager

I’m a geek. A quantifiable geek. I’m a geek because I attended and ENJOYED attending the Health Data Initiative (HDI) Forum III: Health Datapalooza in Washington, D.C. last week. HDI began three years ago with 10 people in a conference room and this year’s event drew more than 1,600 business leaders, academics, information technology gurus, non-profit leaders and policy makers. Comprised of keynote speakers, demonstrations, and group discussions, Health Datapalooza was an energetic, extraordinary opportunity to learn from key innovators in health information technology to promote access to and sharing of health data to improve patient outcomes.

By ACHA on 8/3/2011 10:11 AM

By Amy Basken
ACHA Advocacy Coordinator

I love chocolate. Dove Dark Chocolate Promises. Well, and M&M’s, too. This should come as no surprise to anyone who knows me.

Any woman I know would agree that chocolate is wonderful—it reduces stress, renews energy, and may even be an aphrodisiac. Many women will also agree that chocolate may save lives—particularly those of our spouses. Thus, in our house, the tradition of chocolate for Valentine’s Day has morphed to the giving of a bag of Dove Chocolate once every 28 days.

By ACHA on 6/28/2011 9:23 AM

By Amy Basken
ACHA Advocacy Coordinator

I love working with ACHA as they advocate to change the landscape for those living with congenital heart defects—or is it congenital heart disease? Ugh. A few months ago, I spent an entire day asking countless patients, parents and professionals about whether I should refer to CHD as congenital heart disease or congenital heart defects in our advocacy documents. I hadn't thought about what a difference a word could make.

By ACHA on 5/24/2011 9:14 AM

By Terri Schaefer
Communications Manager

On behalf of ACHA, and especially all of our ACHA future bloggers, I want to welcome you to our new ACHA Blog! Thank you for visiting, and I’m looking forward to you becoming regular readers to see all that we have to offer; we have quite a few bloggers on board who will post about many topics relevant to the CHD community.