“But If We Can't Live Together... We're Gonna Die Alone”

The title of my first blog post is a quote from my favorite show Lost. And after a recent trip to Hawaii, and my first real “episode” of congestive heart failure, it got me thinking: Can we ACHDers do this alone or do we really need to “live together” to survive?

Almost 45 this past spring, it was easy for me to chalk up being tired and not as full of energy to my age, full-time job, and three children—so gym visits became fewer and fewer. Night sweats? Must be that early menopause thing everyone talks about. Dull chest ache that I reported to my pediatric cardiologist back in February? “Most ACHDers don’t experience chest pain, must be gastrointestinal.” OK, lay off the salsa.

But a trip to D.C. to visit schools with my oldest daughter scared the you-know-what out of me—not because my oldest was almost off to college, but because I got off the plane and was exhausted. And the more I walked, the worse it got. By the time we left the airport I was ready for a nap. The few days we were there included a lot of walking, and even my daughter started to ask what was wrong when I opted for cabs.

I had a physical scheduled on my return, two days before I was to get back on a plane to L.A. for the ACHA conference then on to Hawaii for an early childhood conference. A funky EKG (I am blessed with a primary care physician who takes me seriously when I complain that I don’t feel right) started the ball rolling....

So sparing all the details, turns out my conduit was extremely blocked. My right ventricle had doubled in size, my ejection fraction had gone down to 19% and I got my first heart failure classification.

Both my pediatric cardiologist and my new adult congenital cardiologist said “we’ve never seen this before” and “we haven’t seen these symptoms presented before.” I can’t help but think I am not that original!

This brings me back to the quote: Our stories are important. Our collective data is important. We are here because of countless hours of labor and love by our parents, researchers, doctors, nurses and advocates. And now, more than ever, it is important that we all be part of that labor. If my story and hearing my symptoms can reach one other person who may have similar symptoms and encourage him or her to check them out, then think of what all of our stories can do!

I want to live. And I want to do it together, sharing our stories, triumphs, sorrows. Because in the end, no one wants to go it alone.