Congenital Heart Defect Awareness Week 2010


Congenital Heart Defect Awareness Week is something I try and participate in every year in one way or another. This year I'm hoping to spread awareness through my blog and social networks. If you have no clue about this or why I participate, let me inform you.

Congenital heart disease is the most common birth defect and the leading cause of birth-defect related deaths worldwide. Oftentimes the defects are genetic but in many cases, the cause is unknown. To see a full list of congenital heart defects, go here.

CHD affects approximately 1.8 million families in the United States alone but sadly there is little funding that goes into research, support and education for patients and parents. The organization CHIN (Congenital Heart Information Network) hopes to raise awareness by sharing real-life experiences and providing information. They hope that in educating the public there will be improved early diagnosis, more funding and research.

CHD has affected me personally. I was diagnosed with Mitral Valve Prolapse my senior year of High School. Mitral Valve Prolapse (MVP) is – in non-technical terms – when the valve separating two of your heart's chambers doesn't work right. In my case, the valve regurgitates blood back the wrong way, which in turn causes my heart to race extremely fast.
The Mayo Clinic states: "Although MVP is a lifetime disorder, many people with this condition never have signs and symptoms. When diagnosed, people may be surprised to learn that they have a heart abnormality because of the absence of signs and symptoms." My symptoms started slowly and then got gradually worse until I couldn't even participate in Marching Band or most physical activities anymore because I felt like I couldn't breathe. It felt like my heart was going to burst out of my chest.
My regular doctor referred me to a cardiologist because of my fast heart rate and breathing problems. I wore a halter monitor for a few days so he could see what was going on. According to the monitor, my heart rate fluctuated and at times when I was active or stressed it would go upwards of 160 beats or more per minute. If I was stressed or tired, I would often have panic attacks that felt much like a heart attack. He recommended that I start taking Toprol. Toprol is a beta-blocker that helps slow my heart rate and lower my blood pressure. (Although I've never had issues with my blood pressure.)
I also found out from my cardiologist that I have a small hole in my heart – a congenital heart defect that I have most likely had since birth. It's really nothing to worry about - for now - but I have to get an echocardiogram done once a year to check it out and make sure that it hasn't gotten any bigger or changed in any way. I have an excellent cardiologist who is really on top of everything and I completely trust him.

So I take medicine and it helps my problem but it's never fully going to go away. It's something I'll have to live with for the rest of my life. I have to check out every medication I take with my cardiologist to make sure there's no drug interactions. If I were to take anything with aspirin in it while I'm taking my beta blocker, it could make me seriously ill. I can't forget to take my medicine either – if you just stop taking it, it can cause a lot of problems. Whenever I get pregnant, I have been classified as high risk, although I've had no issues whatsoever giving birth. Eventually I could have to have a valve replacement - but that's a long way down the road, if it even comes to pass. MVP has also caused me to occasionally have panic and anxiety attacks, among other assorted symptoms. Luckily, I've been able to keep this to a minimum with breathing and relaxation techniques.

I could have it a lot worse and I'm thankful that I don't. I'm one of the lucky ones that gets to take medicine and feel better. But there are many people out there who have to go through procedure after procedure and surgery after surgery. I've gotten involved in advocacy of heart awareness because I think that every child that is born should have a mandatory heart screening and because I want people to be more aware of these issues. I hope you'll take a moment to visit one of the websites listed below or pass the information along to someone else!

*Facts and information for this blog post were taken from:

This is one in a series of posts on heart awareness:
~ CHD Awareness Week 2010 and more of my story *You're currently reading this one
~ CHD Awareness Week 2012
~ CHD Awareness Week 2012: CHD Facts

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