Our ACHA bloggers cover many topics relevant to the CHD community.
I love working with ACHA as they advocate to change the landscape for those living with congenital heart defects—or is it congenital heart disease? Ugh. A few months ago, I spent an entire day asking countless patients, parents and professionals about whether I should refer to CHD as congenital heart disease or congenital heart defects in our advocacy documents. I hadn't thought about what a difference a word could make.
In June 2008, I had open heart surgery to replace my severely leaking pulmonary valve (PVR). This leak was a direct result of my original Tetralogy of Fallot repair back in 1977 so I’ve always known a valve replacement was possible. My surgery was not an emergency, though it was an inevitable necessity in my life. At the time, I was working full-time in marketing, had two Ivy League degrees, exercised almost daily, and traveled often for both work and pleasure. I had friends and a significant other. Pretty much a normal lifestyle for a young 30-something except that I was born with a heart defect.
I am a neonatal nurse and the daughter of a man affected by transposition of the great arteries (TGA). Growing up, I never saw or knew the effects of my father’s heart condition. Now, as a nurse working with newborns, I see firsthand what my father and his family went through. This is the story of my father, in his own words, that describes what he’s been through since birth:
There are more than a million adults living with congenital heart disease.
A little over a month ago, the Adult Congenital Heart Association gathered for a conference in L.A. that brought together a majority of physicians who specialize in caring for potential lifelong survivors in the field of congenital heart disease.
I was fortunate to attend with my wife and meet many of these doctors along with several adult survivors who like me are enjoying a good life despite its many challenges.
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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.