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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 6/28/2013 11:53 AM

By Kelly Deeny

I feel incredibly guilty that I didn't participate in this year's Delaware Valley Congenital Heart Walk. There were so many goings-on that weekend and I missed a beautiful day. So, I've decided to start walking again.

A couple years ago, I found a fundraising website where you create a project and pick an organization to be the recipient of your fundraising efforts. I decided to create the Walking for My Heart project. For every specific amount of money donated ($10 or $25, I don't recall), I would walk one mile. I ended up raising enough money to walk eight miles thanks to my family, friends and colleagues.

By ACHA on 6/26/2013 2:53 PM

By Meghann Ackerman

Apparently, I haven’t spent enough time in hospitals.

I learned this a few weeks ago at my second annual trip to the ER for dehydration. As I was enjoying the restorative effects of an IV, Victor was taking note of all the equipment in the room.

“That’s a terrible design,” he said, after a nurse came in to check on my heart monitor. “She obviously knows how to use it, but it’s not very intuitive.”

By ACHA on 6/24/2013 1:34 PM

By Jon Ritchings, Jr.

If any of you have ever talked to me about my experiences, you would find out pretty quickly that I am notorious in my local hospital for destroying or wearing out everything that they put in me. Case in point: I’ve never had a pacemaker last longer than four and a half years and I even smashed one and had to have it and all my leads removed and relocated due to infection. So last summer I got all new hardware, including a new lead run into my right atrium.

Well, I’ve been up to my old tricks. Sometime in the last three months I’ve managed to pull that lead free of the heart wall. So what does a person do when they destroy equipment? I laugh about it, make sure I’m not in immediate danger and then take care of the situation. There isn’t much else you can do, because worrying about it isn’t going to change anything.

By ACHA on 6/20/2013 2:30 PM

By Yvonne Hall

The past few weeks have been filled with firsts for my daughter, Lorie. Sadly, we too often take many ordinary experiences for granted, but anyone with a compromised lifestyle understands ordinary doesn’t exist.

Lorie, a congenital heart patient, underwent a lifesaving transplant in March 2012. As a child she lived as normal a life as her health would allow, but there were restrictions on her physical activities. Riding a bike was one such restriction. Her one attempt resulted in catapulting over the handlebars, which signaled the end to her biking endeavors.

By ACHA on 6/18/2013 11:15 AM

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 ACHA on 6/14/2013 2:41 PM

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 ACHA on 6/12/2013 1:45 PM

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 ACHA on 6/10/2013 12:26 PM

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 ACHA on 6/7/2013 1:13 PM

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 ACHA on 6/5/2013 11:41 AM

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.