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Changing Cities, Transitioning Care
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Taking Your Scars International
When I Finally Met People With CHD
Learning to Live Life at a Safe Pace
I Am the Only Person I Know with CHD
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CHD is a Lifelong Disease
My Transplant Brother
“Healthy Enough”
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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 3/30/2012 11:34 AM

By Clare Almand

Moving to New York has opened my eyes to many things, including a secret that society and even my own mother tried to keep from me.

Brussels sprouts are delicious. Like, for real.

I was fortunate enough to live with a health-conscious friend who cooked dinner every night. She regularly made dishes with a heaping side of brussels sprouts, kale, or spinach. I’d always had a variety of vegetables at dinner growing up (except for sprouts), but I had become accustomed to my mother serving me fewer of them, because I’m Clare—I spread my food around my plate and eat my vegetables last. However, a combination of being a guest, having the desire to eat more healthfully and my roommate making really delicious meals caused me to clean my plate and even ask for seconds.

By ACHA on 3/28/2012 10:42 AM

By Kelly Deeny

I’m defective. Or so I’ve been told. While the initial response may prompt hurt feelings and/or shock, I accept it as truth. I have a defect—one that I was born with.

The word "defect" tends to inspire negative connotations, as though there’s something lacking. Sometimes it’s physical. Other times emotional or even mental. You’re labeled as “less than” when, in fact, we all have something that can be improved upon. There are those who’ve battled addiction. Others who’ve struggled with challenging weight issues. What some would determine to be defects, I view as simply part of an individual journey. Their lives are their own to live. They have choices to make just as I do.

By ACHA on 3/26/2012 2:07 PM

By Jon Ritchings, Jr.

A recent comment about faith on an online ACHD group I belong to got me thinking. I listen to people talk about faith—people in the CHD community, my regular community, the religious community for sure. I see a lot of people go to church, temple, synagogue, and pull out their prayer rug. If you ask them why, they tell you it is their faith. They do these things because they have faith in their religion, their religious leader or their particular religious scripture. They have faith, as if faith were an object. As if the person who belonged to the right religion had the real faith and everyone else’s faith was somehow counterfeit.

By ACHA on 3/21/2012 10:10 AM

By Jennifer Gooden

Ziggy and I had been engaged for quite some time and we kept putting it off and putting it off. The whole wedding thing. Between both of us going to school full time, having full-time jobs and me seeing a new doctor every week, who has time to plan a wedding? Not us, that is for sure. We could barely find time to think about colors (purple and silver, by the way), let alone assemble a guest list.

By ACHA on 3/19/2012 1:12 PM

by Stephie Goldfish

Last week, as my sister and I were taking a drive, I mentioned to her that I may not write this blog, that I may not write anymore blogs, and that I want to take a break from CHD—and everything and everyone, actually.

If there’s anything I’ve ever been consistent about, it is in being inconsistent.

By ACHA on 3/16/2012 2:45 PM

By Paul Willgoss

I’ve had a bit of a scare recently—a measurement went wrong and I was yanked in by my cardiologist for an urgent check-up. If the numbers had been actually been right then I’d probably be typing this while prepping for a new pulmonary valve. The full story is here.

Anyway, I’m not prepping for surgery, but it has had an impact. I’m a confidence runner. If I run and enjoy it, and I’m not thinking about the heart, I run and for me I run well.

By ACHA on 3/14/2012 11:19 AM

By Christy Sillman

“I wish I never knew congenital heart disease,” posted one of my heart mom Facebook friends. I get what she is saying—that none of us chose to know CHD, but it is all we know so we’re forced to face it head on. I think about all my family members and how CHD has changed their lives and the guilt starts to sink in. It’s so silly because it’s not like we asked for CHD; it just hurts to feel like a burden.

There are heart moms, heart dads, heart grandparents, and even heart siblings who I know wish they were ignorant to a life with CHD.

But what about the heart spouses and the heart friends? These are the unsung heroes of the CHD support team. When you really think about it, they are willingly choosing to invite CHD into their life. That is something really astounding.

By ACHA on 3/12/2012 12:03 PM

By Jennifer Rice

On March 1 I attended Lobby Day hosted by ACHA and Mended Little Hearts in Washington, D.C. It was an amazing experience. This was my first Lobby Day and I was not sure what to expect. To be honest, I was a little hesitant to go because it was super early in the morning—7 a.m. in D.C. traffic is awful—and I am a terrible public speaker.

By ACHA on 3/9/2012 9:58 AM

By Ken Woodhouse

When I first heard about Lobby Day, I knew I wanted to go. But there was even more to it than that. Knowing that I could go made it even more important that I did go. Even as a newcomer approaching this Lobby Day with high expectations, I was certainly not disappointed. Not only did I meet some incredible people—fellow patients, parents, and staff and board members from ACHA and Mended Little Hearts—but I also had the opportunity to interact with some great Congressional staff members on behalf of the CHD community.

By ACHA on 3/7/2012 2:44 PM

By Kim Edgren

I almost didn’t make it to Congenital Heart Lobby Day. I decided at the last minute to go (boy are flights expensive when you book them two days in advance!); my mother-in-law ended up in the hospital; and my flight almost didn’t happen because of “severe” weather. But, I made it to D.C. There were many great highlights—the wonderful reception at the Heart House, meeting with my Massachusetts Senate and House aides, and of course navigating the buildings and standing in the security lines. But what really stuck with me, and often does in my life, are the people involved in Lobby Day and their stories.