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 9/27/2012 8:53 AM

By Christy Sillman

I’ll admit it—I’m a control freak. I’m a type-A, people pleasing, perfectionist wacko. I don’t know if it’s from growing up around medical personnel (they’re generally all type-A people) or if it’s genetic, but it’s just who I am. I’m often up late at night reassessing my five-year plan and adjusting as needed. I like to plan—I don’t formulate only plan A and B, I’ve got at least through plan F prepared.

One of the most frustrating parts of living with CHD is not being able to truly plan. With the unpredictability in the nature of our disease—the periods of “normalcy” followed by huge life upheavals when there’s a new procedure or surgery we have to face—it’s sometimes easy to feel out of control or depressed. When I was diagnosed with cardiomyopathy after my pregnancy I was devastated and fell into an angry depression; I was focusing on what I couldn’t control and I felt helpless.

By ACHA on 9/24/2012 12:08 PM

By Meghann Ackerman

There are some unintended health benefits to being married to a guy with a congenital heart defect. While trying to wean Victor off take-out Chinese and meat-only meals, I’ve started eating better. And, as an attempt to get us both exercising more, I’m learning how to roller skate.

Aggressive inline skating has been Victor’s exercise of choice since his teen years, but as the falls have started hurting more and other responsibilities take priority he’s gone to the skatepark less and less. My learning how to skate ensures Victor skates and doesn’t let one of his passions fall to the wayside. And, you know, also gets me up and active.

By ACHA on 9/21/2012 10:28 AM

By Clare Almand

When I first told my cardiologist about my plans to move to New York in January, she recommended I see a cardiologist there, just to let them know I was there and so I would have someone to see in case anything went wrong. Because I need to be told 18,000 times to complete a task, I didn’t do that.

I stalled at first because I knew there was a chance that New York wouldn’t work out. My internships might not be what I wanted or they wouldn’t turn into a job or maybe I just wouldn’t be able to transition to city life. When it became clear that I was staying in April after being offered a job, I still didn’t make an appointment, because I planned on going home to see my regular cardiologist in June, like always.

By ACHA on 9/19/2012 1:53 PM

By Paul Willgoss

It’s getting closer, time has stopped being measured in months—or even weeks—and it’s just days now until I line up in Sherwood Forest and start running for 50 km (31 miles) in one go.

The Ultra is so beyond anything I’ve ever done before that the nerves are beginning to jangle; the old demons are trying to resurface.

The nerves are runner’s nerves—how will I do, will I make my target time, will I get injured in the last couple of days, how should I carbo-load…

By ACHA on 9/17/2012 11:10 AM

By Becca Atherton

This Friday I will be traveling up to California to see my doctors there. Lately I have been having a lot of memory problems, which we think may be because of one my medications. The problem becomes, though, that this medication protects me from a certain type of arrhythmia and right now, we are not sure if there is a medication I could take besides this one that wouldn't have the memory side effects.

By ACHA on 9/13/2012 11:07 AM

By Alissa Butterfass

As I write this, it is 9 p.m. on September 11th. Eleven years ago, I was on my way to work at the World Financial Center. I exited the subway train at the World Trade Center station only to be rushed by a police officer to the street-side exit, away from the exit that led to the two towers. My initial thought was that there must be a mugger with a gun in the station. If only…

I wasn’t going to bring up September 11th to my kids quite yet, but at dinner my 6-year-old son asked if I knew that today was a holiday. I asked what holiday and he told me it was the day we remember the fighting in the two towers.

By ACHA on 9/11/2012 10:03 AM

By Ken Woodhouse

This week—September 15, to be exact—marks the one year anniversary of receiving a recommendation for my second open heart surgery. One year ago, I was scared, overwhelmed, confused, and completely unsure of what the next 12 months would hold for me. Truth be told, I wasn’t even thinking that far ahead anyway. Rather, I was only focused on those immediate decisions that I had to make in the upcoming weeks.

This last year has been an incredible journey for me and one that I never would have imagined. When I think about The Power of One, I think about a few things: 1) the impact of one ACHA staff member (Thank you, Paula!); 2) the effect of one ACHA Ambassador (Thank you, Russell!); and 3) the things that I have been able to accomplish as just one individual over the past year.

By ACHA on 9/10/2012 12:26 PM

By Krista McIlmoil

When I was a kid, I knew I was different. I couldn't run like the other kids, my heart would sometimes beat in a fast, erratic rhythm, and I had a long, skinny scar on my chest. I had a handful of close friends and a great family, but I didn't have anyone who really understood what I went through.

That is, until I met Gabe.

I was scheduled for my second open heart surgery, but the first I would actually remember. I was more mad than scared to be having open heart surgery. I was in the sixth grade and I was missing so much! I would be missing out on the annual sixth grade vs. teachers softball game, the "graduation" Great America trip, and the last day of elementary school.

By ACHA on 9/6/2012 12:51 PM

By Stephie Goldfish

Mom knew we were coming. We had phoned her on our way and she even said she would prepare some Haitian chicken.

After the long eight-hour drive, around 11:30 p.m., we arrived at our mother’s senior high-rise apartment building. My twin sister and I each carried up our cat in its carriage and a few of our personal items. It’s a cumbersome routine, and although there is an elevator, I had to stop outside of the elevator to catch my breath before we knocked on our mom’s door. I do this so that I don’t stand there panting and out of breath when Mom opens the door, and my sister waited with me to make sure I was OK.

By ACHA on 9/4/2012 2:19 PM

By Jon Ritchings, Jr.

Note: read Part 1 of Jon’s post by clicking here.

The second thing that helps me at the hospital is to find things to do. Anything that takes your mind off the monotony of sitting in a hospital bed staring at the ceiling is going to help you get out of the hospital sooner. I'm not talking about watching TV, either. Most hospitals provide a personal TV with a few crappy cable networks but really, it's like a token way for them to occupy your time.