By Michael Pernick

As a child growing up, my mom, like all loving mothers, always told me I was special. She always told me I was the smartest, nicest, and cutest boy in the world (now she looks at me and asks “what happened?”—but that’s besides the point). But I knew I was different, and not for the reasons my mom mentioned. I was the only child in school with a big bump on my chest. I was the only child in school with scars running up and down my upper body, side, and back. And I noticed that when I went out to the playground, I would get tired much more quickly than the other children. I knew I was special, but not for the reasons my mom told me.

By Paul Willgoss

We are more than our heart conditions, so let us have a good moan!

Normally this is a genuine battle cry for holistic medicine—and that’s holistic as in whole person, not in any new age, mumbo jumbo sense!

Usually, it’s a recognition that although we have our various heart conditions, some of us have attendant scars (physical and psychological), implantable technologies, occasionally funky bits and a level of knowledge about medical issues that leaves most general practitioners a tad confused.

For me, this last couple of weeks it’s been about the rest of my body not being able to do what the heart is ready and up for. I’ve been injured!

By Melissa Nelson

Technology is a part of my daily life—between the three computers I use, my iPod and my phone, I really can’t get away from it. And even if I wanted to get away and I went out to the woods where I had no signal and no internet connection, I would still rely on technology.

My pacemaker is my most expensive technological device that I own and the one I rely on at all times. Although it can’t be a Wi-Fi hotspot or gold plated or even do anything cool that people can see with their eyes, it has the best operating system of any device I have ever seen.

By Clare Almand

Last year, I received a letter from the company that manufactures my ICD informing me that there’s a 1 in 9,000 chance that I have a defective device. Not enough of a problem that it demanded a recall, but just something that I should be aware of. The “defect” that my device might have would result in the battery depleting to 0 suddenly.

For someone who needs the device for the defibrillator only, it may not be an immediate crisis. But for someone like myself, who needs the device to pace my heart constantly and has needed this for more than 15 years, a defect of this magnitude would cause me a lot of trouble.

By Becca Atherton

It's pretty obvious when you meet me that I am generally a happy person. People have told me more and more recently how they love my sense of humor and my attitude about life. I've learned through my life that laughter does help you feel better—which probably explains why I love comedies, whether it's a TV show or a movie.

When people make weird comments about my scar (like the lady who thought my scar was a drink I spilled on myself), I usually don't get offended—unless they are purposely trying to be rude—and instead, I laugh it off and find it amusing. I'll go home and I'll tell my family about the newest and weirdest comment. We find humor in some of the things people say. Because if I didn't do that, I could have a chip on my shoulder from all the things people have said to me. But when I laugh it off and get a kick out of the stupid things people say, it makes for great stories!

By Krista McIlmoil

We all need help sometimes. There are times when we need help with something simple like figuring out how to spell a word correctly, or how to figure out that weird-looking algebraic formula. Then there are times in life when we need a lot of help—when we are feeling sad or lost and need a loved one to help pull us (emotionally) from the rubble.

Because of my CHD, I find that I have several moments when I feel low, but am fortunate enough to have not only supportive friends and family members, but also have great resources at my fingertips to help answer any outstanding questions that may come with my CHD. I recently joined a group on Facebook for women with CHD, my zipper sisters. Before meeting this group of incredible women, I never realized just how many other women there were out there experiencing the same trials and tribulations that I go through every day. It’s important to remember that we are not alone.

By Stephie Goldfish

For part 1 of Stephie’s post, click here.

My journey to the lost horizon and beyond has shed some light into my bruised and broken heart.

Coincidentally, two weeks before I decided to leave my home in North Carolina, I met my neighbor with whom I bonded right away. A retired respiratory therapist/nurse, she was concerned about me, because my sister had just moved, and my neighbor knows how important it is to be near a specialized hospital able to handle my CHD.

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 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 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.