Recent Entries
The Silver Thread Returns
Stress, Anxiety, Fear, Oh My!
Not Cured
Moving Through Grief
CHD and Our Financial Futures
The Gift of Time
The Emotional Rollercoaster of Getting Bad News
My Very First Congenital Heart Walk
Announcing Our Updated Clinic Directory


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 11/25/2015 8:58 AM

By Yvonne Hall

Life tends to go in a straight line, sometimes wobbling a bit here and there until suddenly it doesn’t. During the calmer times it’s easy to be convinced that previously worrisome health situations have magically gone and to believe that you are finally “home free” from the stresses of the past. None of us want to admit setbacks may occur from time to time, but the reality is that they do.

We don’t have to like it. Unfortunately we may have no choice but to accept it.

By ACHA on 11/23/2015 9:33 AM

By Katherine Buchanan

The summer is gone, replaced by fall. I swear 24 hours are so much longer in the summertime. As a student in my first semester of senior year of college, I have experienced a noticeable change of pace since I last blogged. While my summer was no means lackadaisical, the pressure of 17 hours of class on top of project demands, a campus job, and the need to find a “big girl” career—all while appearing to have my life together—is noticeably taking a larger toll on me than balancing work and fun this summer.

By ACHA on 11/20/2015 10:52 AM

By Tracey Grasty

Hi readers, my name is Tracey, and I write to you today as a 49-year-old woman with tricuspid atresia (TA), hypoplastic right heart syndrome, atrial septal defect, and ventricular septal defect. I have had three heart surgeries: the BT shunt, the Waterston shunt, and the RA-PA Fontan (on the surgery front, I also have scoliosis and wore a Milwaukee brace for 5 ½ years, then had a Harrington rod placement surgery in 1983).

By ACHA on 11/18/2015 10:22 AM

By Stephanie Swirsky

This past November 3rd marked the 7-year anniversary of Dan's death. It was a strange anniversary for me; I felt better—better than I ever thought I could without Dan. When Dan died, I was incredibly sad. For years, I didn't know how to feel any other emotion.

By ACHA on 11/16/2015 9:38 AM

By Damion Martin

Of all the stresses that come with congenital heart disease, one that doesn’t necessarily sit front and center is the prospect of our financial futures. As a CHD patient, I often look at my financial situation in the present and am consumed with the finer points of insurance coverage and deductibles, and less so with investments.

With my most recent diagnosis of pace-induced heart failure, I was faced with the realization that I hadn’t done much to help my wife and children thrive, should the darkest of days come sooner than expected. I remember driving home with a growing lump in my throat, playing through the scenario of what their lives would look like without me in it.

By ACHA on 11/10/2015 8:06 PM

By Kim Edgren

“You do too much” is something I hear often, mostly from my mom—although I usually write it off as worry. Lately, however, I have begun questioning if there isn’t some truth to that. I feel as if the months have swept by at an unbelievable speed and each day is as busy as the next. I admit, I tend to take on a lot.

By ACHA on 11/6/2015 8:59 AM

By Becca Atherton

It's been a few weeks since we heard news concerning my transplant and since then, I've been trying to wrap my brain around it all. The hospital decided that I was too high risk for the transplant and denied me. Part of living with a chronic and/or terminal illness is that you are bound to get bad news from the doctors. But you never get used to it and each time you get bad news, you have to go through the healing and coping process all over again.

By ACHA on 11/3/2015 11:41 AM

By Jennifer Gooden

Last year I went to the Adult Congenital Heart Association Conference in Chicago with my zipper sister, Tracey. We both have tricuspid atresia, have had the Fontan procedure, and live in the same area. If that wasn’t enough of a bond, we also work together at a nationally-ranked pediatric hospital in the Cardiac Intensive Care Unit (CICU).

By ACHA on 10/28/2015 11:52 AM

By Ellen Greenberg

This month I had the pleasure of participating in my first Congenital Heart Walk benefiting the Adult Congenital Heart Association and The Children’s Heart Foundation. To say that I was motivated and excited would be an understatement, because my goal is always to raise awareness.

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.