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Introducing My Daughter to Advocacy
A New Sense of Living
My Accidental Heart Journey
Half a Century with Half a Heart
Four Years
Not a Piece of Cake
To My Son on His 25th Birthday
I’m Just Jen
A Look Back and a Look Forward
Another New Year’s Cliché
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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.

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 2/11/2016 9:33 AM

By Anne Gammon

Washing dishes at my sink Monday morning, it seemed hard to fathom that just a week ago I was in Washington, D.C., for the kick off to the 2016 Congenital Heart Legislative Conference. This was my fourth advocacy day, but it had been several years since I was last able to be present. Even more noteworthy, it was the first time I would attend with my daughter with congenital heart disease, Shay, age 15.

By ACHA on 2/8/2016 11:47 AM

By Katherine Buchanan

A little over two years ago I had my second heart surgery. I was a sophomore in college and terrified of the prospect of putting my life in someone else’s hands. While the support of my family and friends was immense and so meaningful, it could not put my fears of mortality and pain at bay.

The period of waiting and recovery was long, dramatic and difficult and defined by a rollercoaster of truly dynamic feelings. I remember walking around my college campus during the fall semester of my sophomore year feeling defined by limitations and drowning in the immense weight of my depression and anxiety.

By ACHA on 2/3/2016 10:02 AM

By Robert Grabel

My name is Robert. I’m a 51-year-old husband, father, runner, guitar player and nonprofit professional. And after a 41-year break, I am a recovering heart patient again. I was born with tetralogy of Fallot. I had open heart surgery when I was 10 years old and never looked back. Until now.

By ACHA on 1/28/2016 1:24 PM

By Tracey Grasty

Sometimes I get scared I will be all alone. I'm scared my parents will leave me all alone because they are in their 80s. I need to have a Fontan revision sometime in the near future, but I'm scared I won't do well, or I will have to go it all alone because—let's face it—my mom won't fly, she has health issues of her own, and my dad, who is older than her, needs to keep her safe.

By ACHA on 1/25/2016 3:06 PM

By Damion Martin

This month marks four years since my open heart surgery. If you would’ve asked me back then what life would be like post-op, I would’ve told you that I looked forward to not having to worry so much about my heart. I would’ve said that it would be great to have that behind me.

Instead, I’ve probably worried about my heart more in the past 48 months than I did for 396 months leading up to my surgery. I talk about my heart more, am more aware of how I feel, and less certain of what I’m capable of.

By ACHA on 1/21/2016 2:18 PM

By Kim Edgren

Being a mom is a beautiful gift that at one point in my life I thought may never happen. Being a CHD mom comes with so many blessings, but worries as well. Along with all the worries for my children’s health and happiness comes fear of what my heath trials may put them through.

By ACHA on 1/14/2016 8:33 AM

From ACHA: We are reposting this letter shared five years ago on our website by ACHA Ambassador and former ACHA Board Member Martha Pauly on her son Andrew Paukstitus’s 25th birthday, with this updated note from Martha:

Andrew Paukstitus lived an excellent 30 years and 5 months. He filled those years with about 80 years’ worth of life. He died January 10, 2016, peacefully, in the loving care of his mother Martha, his sister Megan, and our always there guy, Jack. Donations can be made to Andrew's D.C. Metro Congenital Heart Walk team, Team Pauk. Click here for a direct link or visit the D.C. Metro Congenital Heart Walk webpage and search for Team Pauk.

August 10, 1985 to January 10, 2016.

By ACHA on 1/12/2016 2:12 PM

By Jennifer Gooden

I am not a heart hero. I am not a cardiac warrior. I am not a congenital heart survivor. I am not quite sure why it a plucks my nerve when people call me brave, strong or some combo of cardiac champion.

I am just Jen. I am me.

By ACHA on 1/8/2016 2:08 PM

By Deb Flaherty-Kizer

This New Year’s Eve, I reflected on how 2015 was challenging and yet awesome. The “main event” for me was my open heart surgery on May 21. Preparing myself mentally, physically, and emotionally took up most of the year’s first five months.

My two weeks spent at the hospital are somewhat of a blur—“by design,” as my cardiologist later told me. My three-week rehabilitation stay and the difficult and arduous recovery that followed (and continues) are forever etched in my memory. I am so grateful for the staffs at both facilities who took such wonderful care of me.

By ACHA on 1/6/2016 11:19 AM

By Alissa Butterfass

A new year is always an appropriate time to reflect on the year that has gone by and to think about our goals, wishes and hopes for the year to come. Last week, as my husband and I went on our last date night of 2015, we toasted to what a good year it had been.