12th Anniversary - CRAZY!

On January 5, 1999, I had surgery #3 at UCLA Medical Center.  Crazy to think it's been 12 years since I last had any problems (major or otherwise).  I'm certainly one of the lucky ones.  I can't say that enough. 

Back in December, I had the wonderful opportunity to meet some amazing parents and their children whom all have a congenital heart defect.  These are kids who've had more procedures/surgeries in their first few years of life than I've had in my 25 (almost 26).  It was nice for me to talk to them and let them see that with the advancements of medicine they're children have a long and happy life ahead of them.

When I was told I'd have to have a pulmonary valve replacement (although I didn't have a pulmonary valve at the time to replace) in October, 1998, I was also told that it would last between 5 and 10 years.  Well, now (and I'm a good testament to that) these valves last usually at least 15 to 20 years.  So, at 13 years old, I looked to the future, thinking that I'd have to take a semester off when I'm in college to go this hell again.  And let me tell you, it was pure hell.  It never really occured to me that complications could occur or my body would reject the valve.  Thankfully, it didn't.   I don't care how much I may dislike someone the physical pain that the recovery was and the emotional stress I experienced much later on are things I would never wish upon anyone. 

I can remember that recovery like it was yesterday.  It's all fairly clear to me.  My mother did her best to not allow me to throw a pity party, as much as I wanted to.  About a week after the surgery, I went into the area in the hospital where there are activities for kids to do while they recover from whatever surgery (think hell) they just endured.  There was an 8 year old boy who had open heart surgery and had complication after complication to the point where he hadn't been in school all year.  I distinctly remember my mom saying to me, see it could be worse, at least you got to go to school this year.  And that's how it was, for the next 8 months (until I had left for high school), my mother mad sure that no matter what I thought of my own situation, for someone somewhere they had it worse.  At times I may forget this, but ultimately she's right.  As Plato once said "Be kind, for everyone is fighting a hard battle."  My mother made sure I never forgot that.

I'm still amazed as the days, weeks, months, and years go by I've been lucky enough to not have to go through that all again.  However, I'm also not naive to think that I'm "cured" or that's the last of them - I can live with this valve for the rest of my life.  One day, I'll be told by the doctors that my valve isn't working and they have to replace it.  I'll once again look to a surgeon who has operated on the tinest of children to perform the same miracle on an adult.  As I wait for that day to arrive, modern medicine continues to advance and by then I may not have to endure the pain and stress of open heart surgery (yay!). 

I can't say thanks enough to an awesome team of doctors and nurses; an excellent and skilled surgeon (Dr. Lax); and a 29 mm porcine pulmonary valve.  They all saved my life.

Supporting Heart Disease

I know it's been awhile since I've posted; however, I'd like to share with you a few events I'm going to be participating in this fall in the DC area.

The first one is the Congenital Heart Walk which will be on September 12th at George Mason University.  The money raised from this 1.2 mile walk will benefit the Adult Congenital Heart Association and the Children's Heart Fund.  More information on this event in DC and the other 8 cities, please visit www.congenitalheartwalk.org.  If you would like to donate, please visit my page at: http://bit.ly/aRCTEN.  If you would like to join me and walk with me, please contact me and I'll help you get registered.

The other one is the Start! Heart Walk which will be on November 6th at Nationals Park.  The money raised from this walk will benefit the American Heart Association.  More information on the event, and to see where else there is a Start! Heart Walk, please visit www.startheartwalk.org.  If you would like to donate, please visit my page at: http://bit.ly/d48sOY.  If you would like to join me and walk with me, please contact me and I'll help you get registered.

Thank you for all your support.

I have something in common with an Olympian...

........and no it's not my athletic ability.

A rather little known fact about the most famous snowboarder in the world is that he was born with Tetralogy of Fallot (TOF).  Having 2 open heart surgeries before 1 years old, he has defied gravity for the last 8 years and not let his heart condition get in the way.

Most people had no idea he lives with his condition while completing in such a dangerous sport.  It's so unknown that one of my friends called me after watching the following video where he was interviewed ois n Larry King Live going "Did you know Shaun White had a heart condition?!?"  Yes, I did know but only very very recently.  Earlier this season, watching him compete in the X Games, I googled him and found his Wikipedia article where it mentioned he was born with TOF.

I'm glad to see him giving back to the CHD community.  He mentions on LKL that he recently donated money to a long term care facility in Memphis that allows families to stay close to the hospital while their child (brother/sister) has open heart surgery.  For someone with all that money and the ability to inspire children with his athleticism after facing something so terrifing, I give him props for talking about it and giving congential heart disease a world wide stage... AT LAST.

View the Larry King Live interview at the following link: http://www.cnn.com/video/#/video/bestoftv/2010/02/23/lkl.shaun.white.cnn?hpt=C2.

National Wear Red Day, February 5, 2010

On February 5, 2010, the American Heart Association, along with the Go Red for Women campaign, will be celebrating the power women have to fight heart disease and stroke.

Let's all raise awareness of the #1 killer among women in the United States by wearing red on February 5th.

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. :)