Sweet Charity

When I think of lung transplant recipients, there are a few words that always come to mind. Words like strong, patient, courageous, determined, resilient, and, yes, even lucky. We may come from diverse backgrounds, we may have different diseases and look as different as night and day, we may not share a political persuasion or a continent or even the same general philosophy of life, but all of us have been through something fairly close to hell and back, and all of us have managed to survive. When I look at my fellow lung transplantees, I see a group of individuals who form a true community of souls (both our own and those of our donors) -- each of us together strong, and each of us individually exceptional in our own right. Or, to put it another way, I stand forever in awe of lung transplantees, of donors, of those waiting for transplants, of our families and our doctors, and of anyone living with disease. I'm pretty sure I have a seriously bad case of Chronic Admiration Syndrome for you guys, and I truly hope it's contagious.

So you can imagine my super excited reaction when, a few weeks ago, I received an email from an amazing woman, fellow Colorado native, and (two time) lung transplantee. Oh, and did I also mention FAMOUS OPERA SINGER?! Because yeah, she's got that box checked off too. Talk about putting your new lungs to some seriously good use. 

Meet Charity Tillemann-Dick, beautiful people, who has been wonderful enough to share her TED talk about lung transplant (times two) and her own powerful "Discourses from The Undead." This woman (a survivor of Pulmonary Arterial Hypertension) has long been one of my transplant idols, and I'm delighted to welcome her as a guest blogger here on MLB. 

Without further ado, Charity, take it away. And thank you, sincerely, for an engaging insight into life and lung transplant. And everything in between.

Transplant is one crazy ball of wax and when I first was facing one, I was SO grateful for the bloggers like Piper who take this issue, head on. I blog too, but I do it with four of my (very healthy) sisters. But even those of us who aren't tx blogstars like Piper can talk with our friends and family about organ donation. We can share our status on facebook. We can ask friends if they're signed up as donors. More importantly, I think we can shift the nature of the conversation on this issue. While 90% of Americans say they support organ donation, fewer than 40% are actually registered as donors. We need to look at what's actually causing the disconnect. I talked about this very topic last fall. 

So let's talk about it. Pass this video on via facebook, twitter and your blogs. Talk about this with friends and family. Mortality is an essential part of life. Let's make sure organ donation is part of it too.

Lots of love!  CharityTD 

Discourses from the Undead: Charity Tillemann-Dick at TEDxMidAtlantic

Transplant: The Fairy Tale

Oh, hello again, beautiful people.

I've struggled a little with how to begin a blog after so long (nearly 2 months) of total, selfish absence on my part. I do know I want to say a sincere thanks to all those who emailed/messaged/commented to check in on me. I'm so grateful to be a part of this community, and I do promise to be a little better going forward on the blogging front -- or at least to try. And to make it up to y'all, I thought maybe I'd tell you a little story. So settle in, grab the popcorn, and get cozy, and I'll tell you the (mostly) true story of Transplant: The Fairy Tale.

Once upon a time there was a totally drop-dead beautiful young woman named, um, well let's call her Pipperella. Pipperella was smart, sassy, fun, kind, warm, loving, and just all around awesome*, and Pipperella had been blessed with a very wonderful life.

*As an aside, she was also incredibly humble. Always.

Now Pipperella also happened to be born with a couple of funny, mutated genes that sometimes made that very wonderful life a little more complicated. One day her wizard doctor told her that those pesky little genes meant that she needed to consult the special wizard doctors a few floors up to see if they could magically help her breathe again. These special wizard doctors told Pipperella that they could indeed help her, but that she would have to wait for a brave, unknown donor prince or princess to come along first. Then the wizard doctors would put the young woman into a deep, dark sleep and work a special spell to see if the amazing donor prince/ess could be just the right match for our beautiful heroine. They also explained that, in exchange for this wonderful magic, Pipperella would have to do some "amazing things" for the rest of her life to help keep the amazing donor prince/ess happy and keep the magic working. They explained that it would be a long journey with lots of bread crumbs dropped along the way and plenty of witches and goblins and trolls (oh, my!) hiding in the shadows. And they also said that they were pretty sure it would be worth it, because this is, after all, some really damn special magic.

And so she accepted the journey. And she decided to blog it.

It's been over 2.5 years since my amazing Donor Bob saved my life. In that time, I have travelled home to Colorado, I have worked toward a cure, I have met new people, I have tried new things, I have (almost) achieved a new degree, and I have LIVED. And, of course, I have blogged -- sometimes more than others. I'd apologize for that last part there, but I also know that this is a community of people who totally get it. And by "get it" I mean that you all get that life is a balance -- between body and mind, between public and private, and between taking the time to share our stories and taking the time to live them.

In the past 6 months or so I have been receiving treatment for a variety of "fun" little ailments ranging from the Rejection That Would Not Quit (But Finally Did) and The Tunneled Dialysis Cath From Hell of 2012 and the current Pneumonia That Will Not Quit (Yet) of 2013. And, if we're being honest here (and we always are), I have to admit that a few of these little buggers have proven to be some pretty nasty trolls hiding out under my transplant bridge. I'm currently back on IVs and trying hard to "rest" and "take it easy" so that I can hopefully regain some of the lung function I've misplaced along the journey. I'm also trying, truth be told, to grapple with the fact that just a few weeks ago I was able to run and take huge deep breaths and sing at the top of my lungs if I wanted to and now I'm breathing a little harder and spending my time waiting for the aztreonam to finish infusing. It's not a fun plot twist, even if I am totally confident that it's just a temporary one. I waited an awful long time for my magic spell, guys, and I'm frustrated that some of my goblins keep on rearing their ugly heads. I mean, sure, I know I'll slay this dragon, and the next (and the one after that), whatever it might look like, but that doesn't mean I have to enjoy the fighting.

But that's the funny thing about fairy tales: there's always some question about what to do with your happily ever after. Real lives don't stop when the last page is turned, after all, and real people are always going to have some residual issues after they eat a poisoned apple. My current self is a testament to the stories I've lived through, with Pipperella's determined attitude toward her disease to help me fight my monsters and Prince Donor Bob's sweet spirit reminding me of the importance of patience -- because truly great things can come to those who wait. And somewhere in the middle of all of that, between the stubborn and the kind, is where the real magic happens.

And we lived happily ever after.