There's a certain kinship in us folks who have dangerous or life-limiting conditions going on, and with the whole Rise Of The Internet has come a greater ability for people to share and support one another. I came across Andrea's story through my association on the Blenderized Diet forum, a place of great community knowledge and support for tube-fed people and their carers who want to use real food, because Andrea's sister-in-law Shannon is a member there, and has a tube-fed son Ashton (who, as an aside, has one of the mad-craziest smiles ever seen on the interwebs). Shannon just popped a little post up one day about Andrea's story and new blog, and I started following.
I'll admit that there is a subtle and subterranean sense of ghoulishness involving yourself - even just as a witness - to someone in this boat. You're watching a life-and-death thing here after all and by saying hello and giving your heartfelt wishes you're now invested somehow in the outcome. There is a little of the car-wreck-watcher syndrome. But that's not really what draws one in.
Andrea's suffered from such bad heart problems that for a long time now as well as an implanted defibrillator she's been tubed up to an LVAD, essentially a battery-in-a-backpack powered artificial heart, and came pretty close to death on multiple occasions along the journey. It's trite to say, and these days it's almost completely expected to say, but Andrea is a rather special person, and so are the people around her. That's why it's been a privilege to watch and why last night was so terrifying and elating all at once for me - just some guy in at the other end of a computer in a faraway land.
Andrea's a pretty small lady, meaning that many donor hearts simply wouldn't fit. She knew that chances were she'd be waiting for a child's heart, just to add extra poignancy to the whole organ donor thing. It's not like a heart is coming from a live donor now, is it. This, some other factors, but mainly the woeful rate of organ donation in the US have all combined to make a lengthy wait. She celebrated her first anniversary on the list not long ago.
There was a false alarm a few months ago, with a possible donor situation......oh well. Never mind.
Last night (my time) she got the call, and the drill began. Status updates were made on Facebook, posts were made on the BD list, the blog was updated, and all the many, many people that have been sharing this journey - family, friends and strangers alike - lobbed in their blessings, wishes, prayers and tears that all would go well, that the heart would be a match, that all would go well.....
To say Andrea is a brave woman is also trite. Of course she is. She carries on living as normally as possible despite having this amazing burden of uncertainty, advocating for organ donation, sharing her story with all who will listen to aid that cause, and never complains of her own ills publicly. She has faced down unkind comments (can you believe it??) on news stories about her with grace and compassion, and has been it would seem in some ways a core of strength for all of her carers to draw from. So saying Andrea's brave or courageous or gracious or simply awesome is redundant. Because it's obvious.
What is less obvious at first glance though is the fortitude and sheer love of those around her, and this has been some of the greatest stuff to watch. I mean, just imagine for a moment being her husband. No really, just imagine it for a second. Shaun; kudos to you. That is all I have to say. The sort of man that can make you quietly proud to be a man. Props, fella. Shannon, a tireless campaigner and fierce sort-of protector, an unexpected gift when you get yourself a new sister-in-law. And all the innumerate family and close friends doing all their bits, pulling their little bits of weight, all in the same direction, towards a new heart for their loved one.
Maybe you had to be there, I dunno.
So anyway, yes, someone died yesterday. And it turns out they were an organ donor, and all the right boxes were ticked. It was late and I had yo go to bed still wondering if the heart was a match but when I got up and got online, well, there it was. As I write Andrea has a new heart, beating inside her, doing its thing, and the doctors are completely happy with the way it all went - even the operation was shorter than usual. It's early days of course, and I'm tipping she's going to be one SORE lady when she wakes up and for a while, but for now she's no longer dependent on wires and batteries and pumps and electric shock devices and what-have-you.
Look - a heartbeat.
All because someone had the heart - pun fully intended - and created or was lucky enough to have the family support to be an organ donor. Their life has given not new life, but rather renewed life. To Andrea, and to all the souls around her now weeping and throbbing with happiness and joy. This amazing woman and all the people who have grown in ways the planet just needs more of have been given a stay, a prolonging of life on earth; and for this we all would best be grateful.
Who knows? Yes, the thing that is almost never said is that of course this might not work, and Andrea may not make it through the recovery phase. And if that happens, OK, life has its sadnesses too. But even just taking all the time up until now, this moment, and all the good that has come from this journey for everyone involved and even those of us just able to barrack from the sidelines - hasn't it all been worth it?
So the question now remains: if you are not a registered organ donor, why not?
And lastly Andrea? Good luck.