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I Am No Longer the Only Person I Know with CHD
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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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 4/27/2012 11:17 AM

By Kelly Deeny

Walking: One of the few forms of exercise that I enjoy. When I walk, be it around my neighborhood, a local park or my office building, I’m able to enjoy my surroundings. It’s time to think, to ponder and to daydream. To get some “fresh” air and have time to catch up with friends and family. When I start thinking about walking for my health I recall how I came to become more involved with ACHA.

By ACHA on 4/25/2012 11:52 AM

By Jon Ritchings, Jr.

I think of everything around us as a tool. As part of the CHD community, I know that technology is definitely a tool. Technology has allowed us access to new surgical techniques and devices that have allowed many of us to live longer, more productive lives.

Experience is also a tool. Simple trial and error has answered many questions for my generation and the ones that are coming up now.

By ACHA on 4/23/2012 3:01 PM

By Clare Almand

I find myself in a strange position. I have friends in New York who have known me for years and know all about my heart condition, but I don’t see them every day or even every week. I’ve actually spent the last two weeks in a sublet with two new roommates who don’t know about my heart. I’ve also been interning with a company for three months and they’ve seen my scar, too, but they don’t know any of the stories behind it either.

By ACHA on 4/20/2012 10:46 AM

By Jennifer Gooden

Stress tests. Many of us ACHDers have had one. We have walked them, ran them, huffed and puffed our way through them. Any way we can, we just get them done. My first—and to date, only—stress test was done about four years ago. And I failed with flying colors. Seriously, people, it was an epic fail.

By ACHA on 4/18/2012 1:36 PM

By Christy Sillman

Note: I compiled these tips after informally polling some adults I know with congenital heart disease. I don’t intend to speak for us, but I want our voice to be heard by you—the cardiologist—because without you we’d be the lost survivors.

First off, I want to thank you for devoting your career to caring for adult survivors of CHD. It’s a specialty within a specialty and you’re on the cutting edge of lifelong congenital heart care.

Here are some things I have compiled after my informal poll that I think you should know about us:

By ACHA on 4/16/2012 11:54 AM

By Lorelei Hill

On March 10, 2012, my hospital status changed from congenital cardiac patient to cardiac transplant patient.

It was 5:45 on the evening of March 9, the Friday evening of March Break. As customary since the move, things were quiet in our little apartment. Mike and the kids were scheduled to arrive on Tuesday or Wednesday, and so I was writing when the telephone rang.

By ACHA on 4/13/2012 2:28 PM

By Ellen J. Greenberg

For my first blog, I wanted to talk about all of the letters that are a part of our lives—specifically LD, which to me stands for learning disabilities. No one knows exactly why, but people with CHD are more likely to have learning disabilities. As if life can’t be hard enough sometimes, you add all the labels or acronyms to our lives. Whether we want to be “labeled” or not, we somehow are. We receive labels from our doctors, from our schools and teachers. Eventually friends catch on. Therefore, if you wanted to keep these things private, forget it—because society already has the letters that label us.

By ACHA on 4/11/2012 11:25 AM

By Paul Willgoss

Two walks, two weeks, two completely different ways of enjoying the Welsh countryside…

One of the delights of living in Liverpool is that by train, bus or friend’s cars, much of England and Wales’ countryside isn’t too far away.

That said, it’s unusual for me to take two walks, starting within five miles of each other, around different parts of the same range of hills that are so completely different.

By ACHA on 4/10/2012 12:48 PM

By Kim Edgren

This blog post is late. And it is very short. Terri (who edits the ACHA Blog) is very patient. I had high hopes for writing this reflective blog about my adventure as Congenital Heart Walk – Boston Metro committee chair. I wanted to write about the whys, the hows, and the thoughts behind why I took on this great experience, but I have been too busy with the actual planning of the walk! I am attending to a lot of little details as we come upon the final weeks leading up to the walk, as well as to all those other little details in all the other areas of my life—which took up my writing time. I am sure you understand, and I promise a long, reflective, post-walk post!

By ACHA on 4/6/2012 11:38 AM

By Ken Woodhouse

As someone who has always loved cycling and never really thought too much about running, I didn’t expect that I would one day write a posting like this … until now!

For cyclists, runners, and all-around outdoor enthusiasts, this time of year is especially exciting, as it marks the beginning of spring and the promise of warmer weather just around the corner. In the coming weeks, Chicago’s lakefront path and other outdoor trails will see a noticeable increase in the number of walkers, runners, rollerbladers, and cyclists. Even though I’ve already gotten in a couple brief bicycle rides in mid-March thanks to some unusually warm weather we got here in the Windy City, we’re coming up on the days when we can expect warmer weather with more consistency.