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.

By ACHA on 11/22/2013 10:31 AM

By Clare Almand

I used to be a real health nut. I worked out at least five days a week, watched what I ate, and read all those fitness magazines. I felt strong. I felt healthy. I was 18 and terrified of gaining the Freshman 15.

My hard work and constant fear of being overweight successfully kept the pounds off for most of college. But over the years, the fear and discipline has gradually declined to the point where I have finally gained those 15 pounds, albeit eight years later.

By ACHA on 9/12/2013 1:31 PM

By Clare Almand

Every Sunday, a blog called PostSecret posts the images of several postcards or pictures containing anonymous secrets from around the world. I like to check every Sunday and save the ones that I like or that I relate to. Not too long ago, a secret was written on a St. Jude’s Children’s Research Hospital notepad that read: “I wonder what wealthy parents of healthy children worry about.” Like I imagine many of you will, I connected with it immediately. I don’t quite know from personal experience, but I know two pretty awesome parents who know this feeling all too well.

By ACHA on 8/1/2013 11:34 AM

By Clare Almand

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.

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 4/12/2013 9:29 AM

By Clare Almand

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.

By ACHA on 2/13/2013 9:39 AM

By Clare Almand

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.

By ACHA on 12/12/2012 2:19 PM

By Clare Almand

The sternotomy scar gets all the attention, all the press. It cuts us right down middle, peeking over our shirts. But while it’s the most publicly known and associated with CHD, my zipper scar was not my first and it’s not my favorite. It’s one of many scars that make me the person that I am.

My first scar was for a coarctation of the aorta repair, which, as a newborn, was easier to fix by operating on my back instead of my front. It now takes over the upper left quadrant of my back, starting a couple inches to the left of my spine and below my left shoulder and following the curve of my shoulder blade. It ends a few inches under my arm.

By ACHA on 11/5/2012 1:11 PM

By Clare Almand

I’m extremely lucky. My condition is not so severe that it affects my everyday life all that much. I take medication daily and once a month I test my INR and transmit my ICD reading over the phone. And of course, every six months I see my cardiologist. But that’s basically it. And while that’s a good thing, there are some instances where I believe my lax attitude about my CHD is a disadvantage.

Hurricane Sandy hit New York City pretty hard. My roommates and I were fortunate enough to be in an area of Brooklyn that got through practically unscathed. We lost our cable and internet Monday night, but regained it by the next morning. Because the subway was flooded (like it was everywhere), we were able to spend most of the rest of the week in our apartment with electricity and water.

By ACHA on 9/21/2012 10:28 AM

By Clare Almand

When I first told my cardiologist about my plans to move to New York in January, she recommended I see a cardiologist there, just to let them know I was there and so I would have someone to see in case anything went wrong. Because I need to be told 18,000 times to complete a task, I didn’t do that.

I stalled at first because I knew there was a chance that New York wouldn’t work out. My internships might not be what I wanted or they wouldn’t turn into a job or maybe I just wouldn’t be able to transition to city life. When it became clear that I was staying in April after being offered a job, I still didn’t make an appointment, because I planned on going home to see my regular cardiologist in June, like always.

By ACHA on 7/30/2012 9:19 AM

By Clare Almand

I write a lot about strength. How my heart condition has made me stronger and given me the resilience to take on any challenges that may come my way. But recently I’ve been thinking about the other side of the equation. What do my heart condition—and my experiences as a result of it—take away from me? How am I really dealing with all of it?

By ACHA on 6/27/2012 9:19 AM

By Clare Almand

I’m not saying that I want the world to end on December 21, 2012, the last day of the Mayan calendar. I’m saying that should I live to see December 22, I will be living to my 26th birthday—also known as my last day with health insurance.

This is not a political essay, but I owe a wealth of gratitude to Obamacare. The new healthcare plan is the reason that I was able to quit a government job that was slowly crushing my soul, get on my parents’ insurance, and try my best to use this amazing one-year gift to break into the entertainment industry. And you know what?

By ACHA on 5/24/2012 10:17 AM

By Clare Almand

When I was 21, I got an ICD as mostly a preventive measure. After an esophageal echo proved I was susceptible to ventricular tachycardia, I discovered that my brand new pacemaker of one year would be replaced with a bigger, bulkier device capable of electrocuting me. I was shocked (I had to say it).

The larger ICD was located slightly lower than my pacemaker, so that combination took some getting used to. But after the normal recovery period, life went on as usual. I wasn’t really afraid. Since I never experienced a long run of V-tach before, I didn’t dwell on the possibility of my ICD going off.

By ACHA on 4/23/2012 3:01 PM

By Clare Almand

I find myself in a strange position. I have friends in New York who have known me for years and know all about my heart condition, but I don’t see them every day or even every week. I’ve actually spent the last two weeks in a sublet with two new roommates who don’t know about my heart. I’ve also been interning with a company for three months and they’ve seen my scar, too, but they don’t know any of the stories behind it either.

By ACHA on 3/30/2012 11:34 AM

By Clare Almand

Moving to New York has opened my eyes to many things, including a secret that society and even my own mother tried to keep from me.

Brussels sprouts are delicious. Like, for real.

I was fortunate enough to live with a health-conscious friend who cooked dinner every night. She regularly made dishes with a heaping side of brussels sprouts, kale, or spinach. I’d always had a variety of vegetables at dinner growing up (except for sprouts), but I had become accustomed to my mother serving me fewer of them, because I’m Clare—I spread my food around my plate and eat my vegetables last. However, a combination of being a guest, having the desire to eat more healthfully and my roommate making really delicious meals caused me to clean my plate and even ask for seconds.

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 1/24/2012 3:34 PM

By Clare Almand

I just did something huge.

I moved from my parents’ house in our suburban town of Arlington, Virginia, to my friend’s couch in New York City.

By ACHA on 12/22/2011 10:44 AM

By Clare Almand

Today is my 25th birthday. I will be spending at least four hours of it on a bus home from New York and then who knows how many hours of it at the DMV to renew my driver’s license so it won’t be illegal for me to operate a motor vehicle the next day. While it’s not the ideal way I’d like to spend my birthday, I know that it could be much worse.

Over the course of many years, I have experienced what it’s like to spend each day from December 11th to December 25th in the hospital. And as someone who would call December her favorite month, having to spend any of it in the hospital sucks.

By ACHA on 11/30/2011 2:47 PM

By Clare Almand

As an avid TV and movie watcher, I often think of how I would apply my experiences with CHD to the cinematic arts. Instead of a two-hour film filled with tears, laughter, heartache and triumph, I’m leaning towards TV sitcom. While an hour-long drama seems more appropriate given the subject matter, my experiences usually lean toward the comedic side.

By ACHA on 11/4/2011 10:24 AM

By Clare Almand

After reading several blog posts about growing up with “expiration dates,” it really got me thinking about how different my childhood was. I never thought I had an expiration date. No one told me to watch out for a certain year. My life since day nine has been problem, solution, problem, solution. Problem on day nine: cardiac arrest. Solution: coarctation repair. Problem two months later: ventricular and atrial septal defects. Solution: my first open heart surgery. And so on and so forth.

By ACHA on 10/10/2011 12:11 PM

By Clare Almand

My freshmen year of college, I was required to take a course on public speaking. We had to present one persuasive speech at the end of the semester and I chose to speak about giving blood, which is very near and dear to my heart—pun intended. During the middle of my speech, which I thought was going well, a tall and lanky student slid out of his chair and hit the floor.