I was in Washington, DC for Lobby Day 2009; attending as a member of the Adult Congenital Heart Association (ACHA). My original plan had been to blog the event for a little while, visit one or two of my Congressional Representatives, and then return and resume blogging. My hernia had different ideas; it flared up and I was pretty much out of the game. So I was asking some of the groups if they would be willing to call me with their results and giving my business card to those that said they would keep me up to date.
My card was accepted at that table and the lady paperclipped it to the file folder she planned to carry. A young woman – just a little younger than me – glanced at it and then her face lit up.
“You’re the Funky Heart! Way cool!”
Well… if you mean that I am the guy behind the keyboard, then yes; I am the Funky Heart. But I am not the only Funky Heart. You’ve got a Funky Heart too, young lady. I don’t know you – I had never even seen you until just a few moments ago, but you and I could sit down to talk and instantly be on the same wavelength. We’re fighting a common foe, both of us have war stories that are similar, yet different.
And we need to get out there and tell those stories. There are a little over one million adults living with a Congenital Heart Defect (CHD) and we don’t have a national spokesperson. No huge, well organized THINK PINK campaign generating awareness and donations. And even the group that you think would do these things, The Big Red Heart, focuses mainly on another issue. We’re all alone out here.
But when one million people start talking, it can generate a huge amount of sound. (This place holds 107, 500 people, that’s a tenth of the adult Funky Hearts in the United States!) And if we could all start talking about CHDs we’d make a heck of a lot of noise!
We need to start talking about how a Heart Defect is not a death sentence anymore. People seem to have that idea, but more than 90% of the children who have surgery for a Heart Defect survive to adulthood. A lot of Cardiac Kids grow up to become Heart Warriors, and we’re living full, useful lives.
We need to emphasize how important it is to get good Congenital Cardiac Care throughout our lives, to keep ourselves as healthy as possible. To do this, we’re going to need more Cardiologists trained to work with us, and it would be wonderful to have some kind of health care plan that will accept a pre-existing condition without draining our bank accounts or making us jump through hoops to get it. Wishing won’t make it so, if we want those thing we have to work for them.
We need to teach Heart Moms and Heart Dads how to care for their Cardiac Kids when they’re young; how to instill in them the need to seek out that good doctor when they grow up; and always, always, always keep up with their health. And it’s up to the Heart Warriors to teach them because we’ve Been There and Done That.
A lot of us grew up thinking we were the Only One. Now we know we aren’t, so it is time to start passing along what we’ve learned.