61 posts tagged with Atrial Septal Defect.

Summer Woes

by Clare Almand on Thursday, Aug 01, 2013

I’m not a huge fan of summer. Before you crucify me, hear me out—I like warm weather, sure. But I hate sweating. Sweating is gross. So to somewhat alleviate the summer heat, especially New York City summer heat, I try to wear light clothing that covers enough but is still the of the tank-top-and-shorts variety. And then just when I think I’m looking pretty good, I realize that I have purple bruises everywhere.

And I mean everywhere. I’ve bruised hips, ankles, knees, calves, thighs, and sides. I’ve even gotten a bruise on the back of my shoulder where it meets my armpit. How does one even bruise there? That’s the worst part—I have no idea how I got 90% of those purple eyesores. Is it just the Coumadin? Or is that just making the bruises that I have anyway a little worse? Do I have extra sensitive skin? Am I sleepwalker, bumping into walls and furniture in my apartment all night? Not that I want another issue to deal with, but that would actually be a reasonable explanation.

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When the Solution Is the Problem

by Clare Almand on Monday, Jun 10, 2013

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.

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The Hood That Made Me Cry

by Ellen Greenberg on Thursday, May 30, 2013

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.

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It’s All Happening

by Clare Almand on Friday, Apr 12, 2013

It’s a quote from one of my favorite movies, “Almost Famous,” a film about a teenage boy who gets his dream job to write for Rolling Stone and goes on an adventure touring with one of his favorite bands. I used the quote in a blog post I wrote about my own adventure—when I first moved to New York a little over a year ago. But as I’m on to a new phase within that same journey, I think it’s worth repeating: It’s all happening.

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Pondering my Heart Defect

by Gwendolyn Russell on Monday, Apr 08, 2013

As I was driving home from my latest doctor’s visit, I began pondering why I have trouble accepting my heart disease. I was born with a heart defect—my mother was unaware of the severity of my illness and she often told me that I was born with a veil over my face—which symbolized that I was going to be someone special. Could it be that I was born blue—with visible signs of a heart defect? I was born at home with only the assistance of a midwife, and no another means of medical attention was accessible.

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Along Came Pacie

by Gwendolyn Russell on Thursday, Feb 28, 2013

On March 30, 2012, I got a pacemaker. I named her Pacie. The first few weeks after surgery, I didn't understand what was happening to me. I vaguely understood the need for a pacemaker, and I struggled with the concept for a few months.

Before my pacemaker implant, I felt like I was living in a fog and it seemed that reality was feigning. I spent most of my days walking around in what appeared to be a dreamlike state.

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Birthdays: Your Personal New Year

by Ellen Greenberg on Friday, Feb 15, 2013

Birthdays come but once a year. However many we have is up to us. I celebrate two birthdays each year. My actual birthday is February 15 and my other is my “Fontanniversary,” the anniversary of my Fontan revision (on May 10, 2006). I do not think it matters how many life-living achievements you celebrate; as long as you feel the need to acknowledge the day in some way, no one can say you are right or wrong.

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Let’s Talk About CHD

by Clare Almand on Wednesday, Feb 13, 2013

I don’t often associate Valentine’s Day with my heart condition. I think of it as a day that makes couples feel obligated to go out and spend money on chocolate and candy. For me, that’s just another Thursday. And normally, I wouldn’t even be paying that much more attention to my heart condition or the festivities associated with it during this month, but I feel a little differently after doing my first Congenital Heart Walk.

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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.