Posts Tagged ‘ Surviving CHD ’

Lauren Gray our CHD Awareness Chair is Surviving CHD

December 30, 2012
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Lauren Gray our CHD Awareness Chair is Surviving CHD

You can’t tell it to look at me, but I have had 4 bouts of pneumonia, 5 catheterizations, 2 open heart surgeries, numerous blood transfusions, countless iv’s, ekg’s, echocardiograms, x-rays, trips to the cardiologist or ER and have taken a plethora of antibiotics in my 40 years. I’ve had many otherwise minor health issues compounded by my heart defect but, the reality is that I am one of the lucky ones. I was born with Tetralogy of Fallot in a rural town in North Carolina. They were not equipped to handle my condition so I was sent to a medical school in a larger town where they performed what was supposed to be a temporary repair. That temporary repair lasted for 17 years with minimal intervention. At age 17 it was determined that a more stable repair was needed. You can probably imagine that as a young teenage girl I was not exactly thrilled about having surgery. In the vainness of my youth I was far more concerned about the scar that would be left on my chest than about the extension and quality of life the surgery would produce. Plus, it wasn’t exactly my definition of how to spend […]

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Nicole Sanchez is Surviving CHD

August 25, 2012
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My name is Nicole Sanchez and I was born on January 4th, 1983 with tricuspid atresia. With TA also comes normally related great arteries with a small ventricular septal defect and rudimentary right ventricle. Basically this means that I was born without a tricuspid valve, and because the valve did not form, neither did my right ventricle. I had two closed-heart surgeries as a baby including a BT shunt placement. In November of 1988, I had open-heart surgery, a Fontan procedure. Since my Fontan, I have been fortunate enough to not need any more surgeries. I do see a cardiologist every year for an EKG and Echo, and there’s the occasional heart monitor or stress test, but so far, so good…Not to say there haven’t been a couple of tiny bumps in the road, but at the end of the day I have led a relatively normal life. I grew up with two brothers (one older, one younger- both heart healthy), went to public school, had a job since I was 14, traveled with friends and studied abroad during college, and have even walked in a half marathon through the streets of San Francisco.  My mother once told me that […]

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Brittany Paquette is Surviving CHD

July 26, 2012
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Last week I announced our newest blog feature “Surviving CHD,” a blog series about our adult members with a lifetime of experience. We have an awesome group of adults who are excited to share with us. This week Brittany Paquette is our very first guess blogger in this new series. Brittany is the Teen Coordinator for one of our newest groups MLH of Portland Oregon. This may be a new group, but they have taken off running, participating in many community events. Meet Brittany Paquette: Hello my name is Brittany Paquette. I was born with Tetralogy of Fallot. I’m now 22 years old and have had 5 Open Heart Surgeries with more to come. I’m really passionate about Adult Congenital Heart Defect support. I grew up with the just the support of my family and friends. There was no such thing as a group like Mended Little Hearts. I want to incorporate as many teens and young adults as I can into Mended Little Hearts. I want to be able to give teens and young adults hope and be able to communicate with them about our struggles as CHD survivors. CHD is not something to hide from or be ashamed […]

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Surviving CHD

July 21, 2012
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Did you know that some of our Coordinators and Members are Adults Surviving CHD? We have been introducing you to Coordinators from across the country, we now have close to 70 groups! Soon we will be introducing Adults Surviving CHD in a new blog series. They will be sharing life experiences, what it was like to grow up with a Congenital Heart Defect in times when Awareness was not important, what it was like to transition into adulthood, and how their Congenital Heart Defect has shaped them. Some of them are parents, and some of them will never have children. All of them are Surviving CHD. As adults Surviving CHD they play an important role in helping new CHD parents understand the future of our children. Many times we enter the world of CHD blindsided, without any real understanding of what our future will hold, without any real understanding of what the future has in store for our child. While every pregnancy, birth experience, childhood, Congenital Heart Defect and Adult Surviving CHD is different, it is important to understand that in most cases CHD is not a death sentence. Join us as we get to know the Adults Surviving CHD, […]

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