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 2/28/2012 12:57 PM

By Jon Ritchings, Jr.

Let me tell you a little about my journey over the better part of this last decade. I have lived in congestive heart failure for almost 12 years. In that time I have been mostly able to lead a normal life. In fac,t I would go as far as to say I was more active in my life than many people that I know.

It hasn't all been peaches and cream, though. Eight years ago I was forced to leave work. I had numerous tests done and a new ICD put in due to episodes of V-Tach. During that time I found that my EF (ejection fraction) was only 15%. There was talk about the possibility of getting a transplant or maybe surgery.

By ACHA on 2/27/2012 10:10 AM

By Clare Almand

Ever since I was born, following a surgery, friends, family and acquaintances would ask my mother, “Is she OK now?” or “Is she all fixed up now?” And my mother would always say, “No.” I think it was difficult dealing with the same question over and over again and not wanting to have to explain that her daughter had something that couldn’t just be “fixed.” (And after reading this, my mother maintained that it is still difficult to answer that question as she still gets asked that even now).

By ACHA on 2/24/2012 11:33 AM

By Ken Woodhouse

Next week, I will be traveling to Washington, D.C.—along with other CHD advocates—to participate in my very first Congenital Heart Lobby Day on Thursday, March 1. This year’s theme is Celebrate and Motivate. The celebrating is important because of our recent successes, namely the passage and funding of the Congenital Heart Futures Act, which calls for increased research and increased surveillance for the CHD community. The motivating is equally, if not more, important, both for ourselves and for our members of Congress in order to keep this momentum going.

By ACHA on 2/23/2012 9:49 AM

By Kim Edgren

One of the things that I have enjoyed about writing for this blog is reflecting on what I have had to say, especially since it is often current to what is going on in my life at the moment. Reflecting on the posts is like reviewing my life and seeing how quickly things can change from one point to another. My last post ended with my realization that changes with my health will happen and sometimes, that sucks.

By ACHA on 2/20/2012 11:28 AM

By Lorelei Hill

Hello my fellow CHDers. You haven’t heard from me lately as I had a bit of a setback in December. Hee, hee. The doctors thought it was the end, but I’m simply not ready to go. Not just yet.

As per the doctors’ “suggestion,” about five weeks ago my mother and I moved to a furnished apartment in the heart of Toronto, just five short minutes from my team at TGH (Toronto General Hospital). The move came together so quickly, so seamlessly that it felt like it was simply meant to be. The hope is that I will get the call for my new heart before springtime.

By ACHA on 2/17/2012 9:08 AM

By Kelly Deeny

I have a confession to make—I am absolutely, positively, unequivocally a hopeless romantic! Phew…it feels wonderful to get that off my chest. I read romance novels, watch soap operas, love fairytales and believe in the concept of soul mates. If a support group existed for those of us with this “affliction,” I’d join in a heartbeat (pun intended). Maybe I’ll have to start my own!

By ACHA on 2/16/2012 3:02 PM

By Stephie Goldfish

Recently, researchers at Rice University and Texas Children’s Hospital have turned stem cells from amniotic fluid into cells that form blood vessels. Their success offers hope that such stem cells may be used to grow tissue patches to repair infant hearts. Read more here.

By ACHA on 2/15/2012 1:19 PM

By Alissa Butterfass

If you’ve read my previous posts, or at least my bio at the bottom of this one, you know I am a self-proclaimed chocoholic. I also don’t really like to exercise. You can do the math: Chocolate + (No)Exercise = OVERWEIGHT.

Well, I am now officially five weeks into doing something about it. Woo-hoo!

By ACHA on 2/13/2012 12:56 PM

By Paul Willgoss

My definition is an athlete is anyone who does a couple of things:

  1. Trains for something—has a goal in mind and works towards it
  2. Times his or herself—just to check for improvements
  3. Keeps going—also known as sheer pig-headedness

So, anyone who signs up for any event—be it a 5k walk in their local park, a 10k run, a half marathon or anything—really is an athlete. That we have a heart condition is just an added complication.

By ACHA on 2/8/2012 1:45 PM

By Jennifer Rice

This time of year always reminds me of one "The Great Heart Debate of '96," a.k.a. a Valentine’s Day party in particular when I was in third grade. I was in Miss G.’s class when I got into a heated debate about hearts with another girl. This girl swore that a heart was the normal hand-written, Valentine’s Day, Hallmark card heart. You know—the one that you drew on your textbooks in high school and then filled in with your boyfriend’s initials. That was her heart.