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 5/30/2013 11:14 AM

By Ellen Greenberg

I feel that embarking on a new situation is extremely scary and comes with constant worry and doubt. People who appear confident might have that as a front so no one sees their fear, but everyone feels it. We wonder if this is the right choice, how long until I know for sure that this is what I want, or do I even like my decision?

People want to know what the easy way out is. Well, guess what? If you have the drive and want to be successful, there is no easy way out. We as patients and people know this on a daily basis. If you breathe, you are going to take chances and risks.

By ACHA on 5/28/2013 3:10 PM

By Jon Ritchings, Jr.

Summer made a brief appearance here in New England and I was able to go out and grill. I love this time of year because it is so easy for us low sodium, low cholesterol, low-fat eaters to have such delicious meals without a whole lot of fuss. I thought I would share my ideas of why summer eating is so great for us CHDers.

By ACHA on 5/24/2013 9:24 AM

By Amy Basken
ACHA Public Policy Manager

When I started in advocacy, it was shortly after Nicholas was born with a severe heart defect. I had felt blindsided by our experience and wanted to make a difference. Then I was invited to Washington, D.C., to tell my story.

What an addicting experience.

To think that I was in the nation’s Capitol—talking to someone who can change things, make them better. To think that my story could help.

By ACHA on 5/22/2013 1:17 PM

By Alissa Butterfass

It’s 11:22 a.m. and I am at 7,520. Steps, that is. I’m back to counting steps and points and pounds and ounces, in my seemingly never-ending challenge to get down to a healthier weight. When I first started in January, I was just minding my eating – trying to eat healthier, snack on veggies instead of cookies, and drink more water.

Next, I found my pedometer and started wearing it daily. I loved to see how high I could get it to go during an average day. Rather than make my son get his own sweatshirt, I’d offer to get it so that I could add a few more steps to my count. But no matter how many times I ran up and down the stairs fetching toys, books and sneakers for my kids (which they really should be getting for themselves anyway), I was barely reaching 5,000 steps. I knew what I had to do if I really wanted to slim down.

By ACHA on 5/16/2013 9:30 AM

By Paul Willgoss

One race cancelled due to the weather.

One event foreshortened due to an error on my part.

Thank you for the good luck wishes. Some things just aren’t meant to be.

It would be easy to draw the analogies to living with CHD, the sense of not knowing whether something is going to happen, and if it does happen—will it work as promised?

By ACHA on 5/14/2013 9:00 AM

By Jennifer Gooden

In March my husband and I went to Walt Disney World in Orlando. We went to celebrate our one-year wedding anniversary. We got a hoppper pass to see all four Disney parks and ran around like a couple of kids (figuratively speaking) and had an absolute blast.

Making our way around the four theme parks—combined with the Florida heat and standing in the Disney lines with that heat—made me pretty exhausted. Day two of our vacation was when the excitement worse off and the fatigue set in, and I realized that I couldn't keep up with the kids in the park or my husband and I started to feel a bit down.

By ACHA on 5/10/2013 9:11 AM

By Stephie Goldfish

Stories are told by my mom and older siblings that happened in the distant past—stories my twin sister and I were too young to remember, but are not lost. They are etched in memory, and are still fresh and vivid as yesterday.

One story is imprinted on my mind, like my infamous abnormal EKG, which will never read normal, unless I receive a combined heart and lung transplant.

By ACHA on 5/8/2013 2:09 PM

By Kim Edgren

Phew, what a month! The Boston Congenital Heart Walk just finished, my oldest will be home tomorrow after her first year of college, and spring and all its outside work is upon us. But today I will experience a role reversal of sorts as I bring my youngest daughter to the cardiologist.

By ACHA on 5/6/2013 12:40 PM

By Christy Sillman

As I reflect back on Sacramento’s inaugural Congenital Heart Walk in late April, there are a lot of things I feel like celebrating. We tripled our first year goal. My team came in second for fundraising. I felt so much support from the people in my life who walked with me as part of my team. But there’s one aspect of the walk’s raving success that I’m overwhelmed by – the local CHD community finding each other.

I spent two years as a pediatric ICU nurse in our local hub for cardiothoracic surgery, UC Davis Medical Center, and I was blessed to care for many local heart families during that time. So I knew there had to be a large CHD community in California’s capital city of Sacramento.

By ACHA on 5/3/2013 10:44 AM

By Alison Boerner

Camp Odayin provides life-changing camp experiences for children with heart disease. Thanks in part to a volunteer staff, each camp program costs only a $25 registration fee per camper. For most of the campers, Camp Odayin is the only chance they have to participate in a summer camp program, try new things, and be among other kids who understand the challenges they have faced in life. Eight–year-old Aidan didn’t know any other kids living with heart disease before coming to Camp Odayin. Aidan has an atrioventricular septal defect and goes through his daily life aside six healthy brothers. His family had attended Camp Odayin Family Camp, but like many parents, Aidan’s mom and dad hesitated to send their medically fragile child to Residential Camp. Aidan’s mom shared the following after Aidan’s week at summer camp...