Early screening can and will save lives

I was reading an article on CNN, and after reading it and watching the video by Campbell Brown, I cried for 5 minutes.  You can read the same article by following this link.  I've had the benefit and privilege of being able to afford specialized treatment for my heart disease that my parents (and I) have known I've had since the day I was born.  The hardest thing is for children and adults who have no family medical history and seem relatively healthy, when in fact just like the children and teens in that article, could drop dead at any moment.  If your child isn't born with heart disease, you'll probably never know if she or he has a problem with their heart until they collapse on the soccer field, or worse die of a heart attack while in high school. 

Congenital heart disease patients know better than anyone the price of cardiac care and the number of tests it can take to diagnose and treat patients.  However, with a simple EKG partients and their children can easily find out if they are at risk for sudden cardiac arrest.  Is it really going to take a pro athlete to die on the basketball court, baseball field, or hockey arena for doctors, insurance companies, and most importantly parents to realize the importance of early detection and screening?  I certainly hope not.

It's my hope that one day EKGs to detect possible cardiac conditions in children and young adults will be just as common as the flu shot.

It will save lives.

Grey's Anatomy

Sometimes I wish that science would take a page from tv shows.  Tonight's episode of Grey's Anatomy is a good representation of this wish.  When people don't have to die because they need a heart transplant, and a machine can take the place of that heart (even if it's just for a little while), then that's what I call science.

DC Heart Walk 2009

Sorry it's taken me so long to post again, but work and life kind of got in the way... that and I didn't have much to talk about or post.  I do now.

Today, November 14, 2009 I participated in my first ever Heart Walk here in the nation's capital to benefit the American Heart Association which helps prevent heart disease and stroke.  We walked 2.9 miles around the main part of the National Mall.  For those of you unfamiliar with Washington, DC this is a large grassy area between the Washington Monument and the US Capitol building.  The walk itself started at 10 am, but they had some booths beforehand so I went early to check them out.  Needless to say, I was slightly disappointed in the type of booths they had.  Very little of the information was about how to prevent heart disease, and most were just tents where large corporate groups could meet up prior to the walk. 

This was apparently the 15th year they've done this in DC; however, it's quite apparent that they don't do good PR about it because I've lived in DC for 6 years, and this is the first time I've ever participated (and trust me if I knew about it... I would have participated years ago).  The other thing that I found disappointing what their lack of emphasis on congenital heart disease... those of us who had no control over our own heart health and battle with it everyday.  At the survivor's area, they only concentrated on those who've had a heart attack or a stroke.  Although I myself have had a stroke, it's not the same way I think of when I think of people who've had a stroke.  I had mine at 1 and it was related to my second open heart surgery.  I think if there was one thing I would change about the information they tell people the day of the event is I would put a little more emphasis on CONGENITAL heart disease.  About 1% of all children born in the US are born with a congenital heart disease.  So as much as we celebrate those who've recovered from a heart attach and/or stroke, let's also celebrate the children who have survived open heart surgeries and have lived into adulthood.

Geico sponsored a tent in which you could write someone who you were walking for... The top part said something like I walk for... and I added

children who live with congenital heart disease and those families who have lost children to heart disease

Prior to the walk starting, I walked close to the stage where they were doing the announcements so I could hear better and get away from some of the mud.  While I was standing there, a guy came up to me and asked if he could read my back to see what I wrote.  He read it and said that's nice.  I said thank you and then mentioned that I was born with a congenital heart defect.  He goes oh really, which one?  I said Pulmonary Atresia and have had 3 open heart surgeries.  He then asks when the last one was, and I said 10 years ago, and he was like well you look good.  I also found out he had 2 daughters (I'm sure he wife was around there somewhere too) and the younger one had a heart transplant when she was 9 weeks old.  Let's just say it took all my composure to not break down in tears.  As he walked away with his older daughter he goes... we are all here for people like you. 

All in all I'm glad I did it, and I raised almost $500 for the American Heart Association. :)

Washington, DC Heart Walk

On November 14, 2009, I will freeze my butt off in our nation's capital, as I walk around the National Mall (aka where all the monuments are, for those of you unfamiliar with DC) to raise money for the American Heart Association.  This is a cause near and dear to my heart (quite literally) as it benefits children and adults of all ages.  I am trying to raise $500 to benefit the AHA, and would appreciate all the help I can get. 

Please join me in this effort by either donating or walking me (I would love the company).  Click here to sign up and walk yourself visit.  Click here if you would like to donate to the American Heart Association. 

Thank you in advance to helping fight this disease, spread awareness, and educating people of all ages about heart disease and stroke.

Baby from India born with his heart outside of chest

Medical technology is AMAZING, and not just what they can do here in the United States.  For those of you who refresh news websites as often as I do, then you may have already heard about the baby boy born in a remote village in India with his heart outside his chest.  By the next day this newborn and his father had made a 1100 km (about 683 miles) journey to a hospital in New Delhi for an operation to contain the heart within the a space between the chest and abdomen as well as remove the infection the little baby suffered during the journey.

Read the stories at: http://www.cnn.com/2009/WORLD/asiapcf/09/03/india.dangling.heart/index.html and http://www.cnn.com/2009/HEALTH/09/02/india.heart/index.html and read the father's story at... http://www.cnn.com/2009/HEALTH/09/01/india.heart.father/index.html.

This is quite an interesting story, and isn't the first time this has happened.  In 2006, doctors in Florida did a similar operation.

Welcome

I've known about my heart condition from the beginning, and I always explained it very matter of factly as: "I was born with a congenital heart disease known as Pulmonary Atresia and I've had three open heart surgeries." What I've only recently understood is the impact that my own story might have on others. I've never met any children with CHD - other than in the hospital recovering from surgery - (surprising, I know) or anyone my age (I'm 24) who was born with a congenital heart defect. I know there are people out there, I've read the stories, seen the pictures, understood the facts and through all of that I've realized the greatest thing of all - I'm one of the lucky ones. If you take away my open heart surgeries I'm a healthy 24 year old woman holding a Bachelor's Degree, Master's Degree and a full time job which I happen to enjoy. I've never really been that sick, although I've seen my fair share of hospitals and emergencies rooms. I see a cardiologist once a year for my EKG, echo and anything else he (or on occasion she) deems necessary, but in reality my chronic illness is manageable, make that VERY manageable. I credit this to some fantastic pediatric cardiologists and surgeons, medical science and research, my family and friends for getting me through the tougher times, and LUCK... a whole lot of luck.


Since my pulmonary valve replacement (rather insertion in my case - I lived without one from the ages of 1-13) in 1999, I have yet to have any major medical mishaps (knock on wood). I should also mention my current doctors and their staff for taking the time year after year to answer my questions and give me the best advice they can regarding the current state of my condition as well as what may or may not occur in the future.
So there you have it - the brief history of my own story. From now on this blog will be used for discussion of CHD, the stories of others, medical research, and my own personal opinion about it. If you have anything you'd like for me to discuss please let me know, I'm always willing to share my opinion - but keep in mind it will be biased and it will have some bearing on my own experiences with my heart condition and other heartache I've endured.