If you google "Rich Peverley" you'll find 10-12 articles about what happened to this man last night.
Last night during a PROFESSIONAL NHL hockey game between the Dallas Stars and Columbus Blue Jackets, Rich Peverley (centre for the Dallas Stars) collapsed on the bench after a shift. Although the media is reporting it as a "cardiac event" from what they're describing, my best guess would be he suffered cardiac arrest. Thanks to quick response and a defibrillator nearby he is stable and recovering nicely in the hospital.
I've never been allowed to play ANY contact sports. What happened to Peverley is a major reason why. I believe every athlete (from high school to college to the professionals) should be required to have an EKG and an echocardiogram prior to being cleared to played. Say what you want, but I've lived with a pre-existing congenital heart condition for 29 years, and this is my greatest fear. That one day I'll suffer cardiac arrest while doing something as simple as playing tennis with my friends.
Tuesday, March 11, 2014
Thursday, November 22, 2012
Treating Adults with CHD
I came across this article today not realizing it was first published on August 20th.
Needless to say, I've been inspired to write a post about it.
As an adult who is a "survivor" of this disease, I applaud The Wall Street Journal for bringing national attention to this complex disease. I saw a pediatric cardiologist until I was 19 and since then had to travel to find my annual care. By about 17 I was starting to get uncomfortable with going to a pediatric cardiologist where the majority of their patients are 12 and under. By 19, my cardiologist felt comfortable to give me a name of a cardiologist specializing in "adult pediatric cardiology" (the type of care featured in the article) in California. So, from 19 until this last summer I went once a year to UCLA Medical Center for my annual care. Both these cardiologists have since retired and thankfully I can drive to my cardiologist's office every year (3 hours to Philadelphia).
The biggest difference between my situation and the situation most of the patients that were featured in the article, is I've known since the time I could understand the situation that life-long care would be necessary and multiple surgeries would be required. My next surgery will be open heart surgery #4 for me.
More than anything, I'm thankful that medical technology and research have allowed almost 90% of children born today with a congenital heart disease live to be an adult. That being said, more research is required and there's still those 10% who die prior to adulthood and no explanation for why the heart doesn't develop properly in 1% of all children born in the US.
I can only hope that as more and more "survivors" live to adulthood, the disease will get more attention and more money will be raised.
Needless to say, I've been inspired to write a post about it.
As an adult who is a "survivor" of this disease, I applaud The Wall Street Journal for bringing national attention to this complex disease. I saw a pediatric cardiologist until I was 19 and since then had to travel to find my annual care. By about 17 I was starting to get uncomfortable with going to a pediatric cardiologist where the majority of their patients are 12 and under. By 19, my cardiologist felt comfortable to give me a name of a cardiologist specializing in "adult pediatric cardiology" (the type of care featured in the article) in California. So, from 19 until this last summer I went once a year to UCLA Medical Center for my annual care. Both these cardiologists have since retired and thankfully I can drive to my cardiologist's office every year (3 hours to Philadelphia).
The biggest difference between my situation and the situation most of the patients that were featured in the article, is I've known since the time I could understand the situation that life-long care would be necessary and multiple surgeries would be required. My next surgery will be open heart surgery #4 for me.
More than anything, I'm thankful that medical technology and research have allowed almost 90% of children born today with a congenital heart disease live to be an adult. That being said, more research is required and there's still those 10% who die prior to adulthood and no explanation for why the heart doesn't develop properly in 1% of all children born in the US.
I can only hope that as more and more "survivors" live to adulthood, the disease will get more attention and more money will be raised.
Friday, October 26, 2012
Helping Others
I'm always inclined to share my story with anyone who will listen. It's even more wonderful when I get to share my story with a family who's dealing with CHD. At the same time, I really don't know what to say. At 27 and relatively healthy, I feel like an anomaly, an exception to the rule. Minus the 3 major surgeries and the (now) yearly visits to a cardiologist, I experience no symptoms. Not only that, I've never had any complications due to surgery (or otherwise) after the age of 2.
The best part about my experience is I've lived a "normal" life. I went to college (and grad school), got a job, and pay my own bills. Most people don't believe when I tell them I was born with a congenital heart condition. Then they see the scar. I have many but the most prominent is an 11 inch scar running right down the middle of my chest. If it were up to me, you wouldn't even see it; however, the best laid plans always have some flaws. I've had complete strangers ask me what the scar is from, then look at me like I have 2 heads when I tell them. Usually because they have no idea what a CHD actually means. I'm a very typical woman in her late 20s just trying to figure out the next 50 years of her life. And maybe that's the biggest problem.
Congenital heart defects are not very well known by the general population. Although they affect children, they certainly don't get the media or national exposure of other diseases, such as cancer. Hell, even the American Heart Association doesn't really supply much money for research for CHD. The Children's Heart Foundation is the ONLY large non-profit organization in which all the money raised goes to research for congenital heart diseases. Worst part about that, the organization has only been in existence for 16 years. Think about that, I'm 27, there was NO non-profit organization providing money for research for CHD until I was 11 years old. I know for a fact, had I been born even let's say 5 years earlier than I was, I probably wouldn't be here today. In a lot of people's minds, I shouldn't be. I've outlived 2 pediatric cardiologists retiring (one of which I was his SECOND patient).
Anyway, I've sidetracked. I'd wager to guess that for those of you reading this post, 90% of you don't know another person who lives with CHD. That may have something to do with although it affects 1 out of every 10 children born in the US, it also kills more kids than all childhood cancers combined. Basically, up until recently (let's guesstimate and say within the last 5 years) children born with this disease weren't given that high of a survival rate. Hell, when I made it to 7 doctors were perplexed. At 13 (at my Bat Mitzvah) my parents threw a giant party for me because well... they could. Little did they know that 8 months from April, 1998 I'd have my 3rd surgery and finally live with a pulmonary valve. By the way, I've had that same valve since, and it's been 13 years. Yep, I've finally gotten to the point where I've lived almost the same number of years with a pulmonary valve than I did without one.
So back to the point of this post, what do I say to these parents (and their children) who live everyday dealing with this illness? Well, I guess, something like this: I'm lucky, really lucky. And there's not a day that goes by that I don't remind myself of that fact.
The best part about my experience is I've lived a "normal" life. I went to college (and grad school), got a job, and pay my own bills. Most people don't believe when I tell them I was born with a congenital heart condition. Then they see the scar. I have many but the most prominent is an 11 inch scar running right down the middle of my chest. If it were up to me, you wouldn't even see it; however, the best laid plans always have some flaws. I've had complete strangers ask me what the scar is from, then look at me like I have 2 heads when I tell them. Usually because they have no idea what a CHD actually means. I'm a very typical woman in her late 20s just trying to figure out the next 50 years of her life. And maybe that's the biggest problem.
Congenital heart defects are not very well known by the general population. Although they affect children, they certainly don't get the media or national exposure of other diseases, such as cancer. Hell, even the American Heart Association doesn't really supply much money for research for CHD. The Children's Heart Foundation is the ONLY large non-profit organization in which all the money raised goes to research for congenital heart diseases. Worst part about that, the organization has only been in existence for 16 years. Think about that, I'm 27, there was NO non-profit organization providing money for research for CHD until I was 11 years old. I know for a fact, had I been born even let's say 5 years earlier than I was, I probably wouldn't be here today. In a lot of people's minds, I shouldn't be. I've outlived 2 pediatric cardiologists retiring (one of which I was his SECOND patient).
Anyway, I've sidetracked. I'd wager to guess that for those of you reading this post, 90% of you don't know another person who lives with CHD. That may have something to do with although it affects 1 out of every 10 children born in the US, it also kills more kids than all childhood cancers combined. Basically, up until recently (let's guesstimate and say within the last 5 years) children born with this disease weren't given that high of a survival rate. Hell, when I made it to 7 doctors were perplexed. At 13 (at my Bat Mitzvah) my parents threw a giant party for me because well... they could. Little did they know that 8 months from April, 1998 I'd have my 3rd surgery and finally live with a pulmonary valve. By the way, I've had that same valve since, and it's been 13 years. Yep, I've finally gotten to the point where I've lived almost the same number of years with a pulmonary valve than I did without one.
So back to the point of this post, what do I say to these parents (and their children) who live everyday dealing with this illness? Well, I guess, something like this: I'm lucky, really lucky. And there's not a day that goes by that I don't remind myself of that fact.
Wednesday, March 2, 2011
Another year older...
...another year to be thankful to be alive.
A lot of people don't like to make a big deal of their birthday... I'm not one of them. I'll make sure that everyone I speak to that day knows it's my birthday. Why? Well, I'm 26 years old now, and without modern medicine and some people with the patience to go to medical school, I wouldn't be here right now.
I completely and totally understand that I'm one of the lucky ones. REALLY LUCKY. I've had the chance to live for 26 years overall fairly healthy, when really I could have easily died the day I was born. My greatest wish would be to NOT have parents with children with congenital heart conditions (mostly moms, known in the CHD circles as Heart Moms) say to me, "You're the first person I've met over the age of 7 that has a congenital heart disease." I'll be honest, I don't remember who said that to me, but it was back in December, and I'll never forget it.
I also understand where this woman is coming from. Honest - until 1999 and in the hospital recovering from the latest surgery, it was the first time I remember meeting ANYONE with CHD. And I was 13. Since then, with the help of a little thing known as the internet, families can meet other families close to them who have kids with CHD. Those kids from there on out - almost automatically have someone who can relate to exactly what they've been through. I wish I had someone like that.
Interestingly enough - often I'm closer in age to mom and dad, but I can relate better to their 5 year old who's had 6 surgeries. I do know what they've been through, and I do understand the emotional toll that it takes on that small child and (in some ways) their parents. I only pray and hope that these kids are as lucky as I am, and 20 years from now they can look back and be thankful to be alive.
A lot of people don't like to make a big deal of their birthday... I'm not one of them. I'll make sure that everyone I speak to that day knows it's my birthday. Why? Well, I'm 26 years old now, and without modern medicine and some people with the patience to go to medical school, I wouldn't be here right now.
I completely and totally understand that I'm one of the lucky ones. REALLY LUCKY. I've had the chance to live for 26 years overall fairly healthy, when really I could have easily died the day I was born. My greatest wish would be to NOT have parents with children with congenital heart conditions (mostly moms, known in the CHD circles as Heart Moms) say to me, "You're the first person I've met over the age of 7 that has a congenital heart disease." I'll be honest, I don't remember who said that to me, but it was back in December, and I'll never forget it.
I also understand where this woman is coming from. Honest - until 1999 and in the hospital recovering from the latest surgery, it was the first time I remember meeting ANYONE with CHD. And I was 13. Since then, with the help of a little thing known as the internet, families can meet other families close to them who have kids with CHD. Those kids from there on out - almost automatically have someone who can relate to exactly what they've been through. I wish I had someone like that.
Interestingly enough - often I'm closer in age to mom and dad, but I can relate better to their 5 year old who's had 6 surgeries. I do know what they've been through, and I do understand the emotional toll that it takes on that small child and (in some ways) their parents. I only pray and hope that these kids are as lucky as I am, and 20 years from now they can look back and be thankful to be alive.
Thursday, February 10, 2011
Superbowl Commercial
If you watched the superbowl, you got to see a fantastic game between the Green Bay Packers and Pittsburgh Steelers. You also got to see some so-so commercials. Well, there was one that stood out to me more than any of them. It was the Darth Vader Volkswagon commercial. The kid was just so damn cute. If you haven't seen it, you can view it here: http://www.youtube.com/watch?v=R55e-uHQna0.
Well, on Monday, the Today Show interview him and his mother. The kid is 6 years old, and has a pacemaker. Pretty cool. What I find interesting about the segment is that Matt Lauer, almost said his congenital heart condition as an afterhtought. It's a great interview, he's super cute, and pretty amazing considering what him and his parents have been through. Watch his interview here: http://www.msnbc.msn.com/id/26184891/vp/41455621#41455621.
Well, on Monday, the Today Show interview him and his mother. The kid is 6 years old, and has a pacemaker. Pretty cool. What I find interesting about the segment is that Matt Lauer, almost said his congenital heart condition as an afterhtought. It's a great interview, he's super cute, and pretty amazing considering what him and his parents have been through. Watch his interview here: http://www.msnbc.msn.com/id/26184891/vp/41455621#41455621.
Wednesday, January 5, 2011
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.
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.
Monday, July 12, 2010
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.
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.
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