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 9/28/2011 9:52 AM

By Amy Verstappen
ACHA President/CEO

Last week, I gave one of the toughest speeches I have ever given in my life. What made it so tough was not that it was to a room full of Congressional staffers, although that certainly didn’t help. Nor was the biggest challenge the fact that there might be press there, or that I would be sharing the podium with some of the smartest people on the planet when it comes to congenital heart disease.

What made it so tough was that I was actually going to have to get up and talk personally about my own journey with CHD. Two days before the briefing, I discovered that my original small role as Q and A moderator had been expanded, and I had eight minutes to talk personally about living with CHD.

By ACHA on 9/26/2011 1:45 PM

By Stephie Goldfish

Every month I order my congenital heart disease medicine. Every month I order my oxygen tanks. Every month, since taking this new CHD medicine, I have to get a pregnancy test. And, every month, since about the age of 13, Mother Nature orders my monthly cycle.

This month, however, when I called in to order my CHD medicine, I got past the normal questioning of setting up a delivery, etc., but then came the question asked every time I call in, "Stephanie, when was your last pregnancy test?"

By ACHA on 9/23/2011 1:17 PM

By Lorelei Hill

Each morning, a choir of birds positions itself outside my bedroom window. Once in place, the concert begins.

“Ode to the morning! It’s a bright new day,” they seem to be singing.

Autumn has always been one of my favorite seasons, this year even more so. Three years ago, after a series of dizzy spells and ongoing arrhythmia, my cardiologist suggested I “make some lifestyle changes.” Up until then I never really considered how having tricuspid atresia might one day restrict my life. I scoffed and told myself I’d be okay. I’ve always been okay.

By ACHA on 9/22/2011 11:14 AM

By Christy Sillman

I made a promise to myself when I was lying in the Pediatric ICU as a 17-year-old recovering from open heart surgery – I would never endure an optional surgery such as plastic surgery. I’d been through enough. It didn’t make any sense to ever put myself through surgery if I didn’t have to.

Now I’m contemplating relinquishing that promise.

By ACHA on 9/19/2011 9:45 AM

By Alissa Butterfass

It was bound to happen. After writing in my last post that I always have so many ideas of what to write about for this blog, this time I was stuck. (I believe in the jinx—I should have known better!) Last weekend, I considered writing something about 9/11. Like Stephie, I was at the World Trade Center that day, but after reading her post, I wanted to come up with a new idea. Then I thought about writing about my (negative) attitude toward exercise, but Kelly beat me to it. Even a few hours ago, I wasn’t sure I’d meet my deadline.

By ACHA on 9/16/2011 9:19 AM

By Kelly Deeny

I have an aversion to exercise. I know, I know. I’m a heart patient. I should be taking great care of my precious ticker. But I really despise exercise just for the sake of exercise. Going to a gym, running on a treadmill or doing weights just isn’t motivating to me. For others it is but this is about me so…I hate exercising!

I was a tiny child. My parents had to beg, plead and prod me to eat. Eventually I caught on and cheese became my favorite food. Ah, dairy—I love thee! Growing up I was never overly concerned with fatty foods or how much mayo I put on my sandwich. I didn’t start putting on some weight until my high school years. Part of my slim figure could be due to my metabolism, but I truly believe it was because I was an active child. Afternoons were spent riding my bike, walking to my friend’s house or playing hide-and-seek. As children we loved being outside. That was fun for us! I often wonder if the same holds true for this generation of children.

By ACHA on 9/14/2011 10:56 AM

By Stephie Goldfish

When I think about how I lived through the horrifying and tragic events of 9/11, traipsed nearly eighty blocks after a major Northeast blackout, and survived a mass transit strike during one of the coldest winters, it doesn't surprise me that my twin sister and doctors call me Superwoman.

To me, though, when I think of Superwoman, it conjures up scenes of a super human with powers enough to have been able to avert a tragedy like 9/11 so that no lives would have been lost, or someone who has the power to prevent any undue hardships caused by a major blackout or transit strike. And, Superwoman's heart would be perfect, not needing to be repaired.

By ACHA on 9/12/2011 11:56 AM

By Christy Sillman

I love how unsuspecting people are when they play a game of scar wars with me. You know—the game where someone shows off their gnarly bike accident scar and then the whole room starts comparing scars. I usually hold back, start off slow with my skin cancer scar, or my busted knee scar, and then—WHAM—I pull up my shirt a bit and the whole room goes silent. It’s awesome, and I’ve learned to use it to my advantage over the years.

By ACHA on 9/8/2011 12:08 PM

By Alissa Butterfass

This is my seventh posting for the ACHA blog. For the first time outside a class setting, I have committed to and actually followed through on writing regularly. As it says right in my bio below, I’m a wannabe author. The only problem was that I wasn’t writing. Sure, I was great with a rehearsal dinner toast or a 40th birthday roast. I had taken a few fiction and memoir writing classes, loving the short in-class assignments but struggling with larger homework pieces. And, I never really sat down and wrote just to write. I hadn’t even kept a journal since studying abroad my junior year of college.

I was starting to think that maybe I wasn’t meant to be a writer. Maybe being an avid reader and a lover of the written word just wasn’t enough to actually make me a writer. Maybe it wasn’t going to happen.

Certainly of all the things I had imagined writing about, I never imagined that my writing would focus so directly on my heart condition. Yes, in any memoir it would certainly make an appearance, a recurring guest star perhaps, but I didn’t see it as the starring role.

By ACHA on 9/6/2011 12:50 PM

By Amy Verstappen
ACHA President/CEO

I am sitting in the airport in Los Angeles, on my way back from a wonderful trip visiting with HeartKids Australia, an organization that invited me to help kick off their planned expansion into adult-directed activities. I left highly impressed with both the HeartKids organization, which is well-funded and well-organized, and the ACHD care in Australia, which seems to be the same. One of the gifts of running ACHA is invitations to visit other countries and learn more about what living with CHD looks like in other places. Often I am reminded that each heart patient’s journey is as profoundly affected by their birthplace as by the shape of their funky heart.