Tuesday, April 19, 2011

Only $2,300

I met my $2300 fundraising minimum today for The 3 Day!

*does a happy dance*

Time to raise the goal and get back to work.

What? You thought I was done at $2300? Nope.

Fundraising is a HUGE part of The 3 Day. There is a $2300 fundraising requirement. If by one month after the walk you have not raised that money, it comes out of your own, personal pocket. That's right, YOU are responsible for it! But the truth is, the majority of walkers raise their $2300 before their walk happens.

"Well, what if I want to raise $2300 and then stop?"

That is completely your choice. BUT... if that is what you're deciding to do, allow me to introduce you to a few people:

First up, is George. If you've been part of the Boston 3 Day, even just once, then you know George. He carries a stick with him... a very large stick. And whenever he arrives at a pit stop or lunch or camp, he yells out, "HONEY! I'M HOME!" And we all yell back at him in greeting. I had heard about George the first day I was in camp, and finally met him on Day 2 at lunch. His smile and laugh are contagious. He lost his wife in 2009 to cancer. Both of his daughters have passed away. And yet, he smiles and laughs and walks and passes out hugs.

Then there's Dusty. Trust me, you can NOT miss Dusty. He's the tall, bald headed dude... walking around in a pink bra. Yep. A pink bra. And it sparkles, or has tassels, or lights up, or something. But you can't miss him, and you don't want to. He will crack you up, motivate you to walk another mile, or run in to the street to retrieve your run-away water bottle (thank you, Dusty!). He's been on Oprah, has pictures of himself and Tim Gunn holding a pink bra, and shows up at nearly every breast cancer fundraiser in his area. I could tell his story, but he's much better at telling it himself: Why Dusty Walks

Finally, there is Betty. Unfortunately, you can't actually meet Betty because she passed away 11 years ago from breast cancer. I wear her name on my shirt and carry her picture around my neck when I walk. I was never able to meet Betty, either. But I have met her wonderful family, including her son, Danny, who has made it his mission in life to help end this disease. He's very blessed to have a celebrity platform to stand on from which to do it, but even if he didn't, I have no doubt that he would fight just as hard. I'm blessed to work with him on a website dedicated to her and the fight against breast cancer: RememberBetty.com

I can't imagine sitting down and explaining to any of these three people that I'm only planning on doing the minimum amount of fundraising. I have no doubt that, with a smile on their faces, they would all say that was great, because $2300 is a lot of money. But for me, it's not ENOUGH money. It will only be ENOUGH when there is a cure for breast cancer. Until then, I'll celebrate meeting my minimum for a few minutes, and then I'll raise the bar.

Friday, April 8, 2011

June 23

Bobbette will be receiving her new kidney on June 23. Thank you to everyone who has gotten tested, spread the word, prayed, or even thought about her during this time. On behalf of Bobbette, her family and friends, we love you.

Thursday, April 7, 2011

Dropping The Ball... or The Kidney

I don't really know how to begin this blog, but this seems like the most appropriate way. Vanderbilt University Medical Center, in particular their Organ Transplant Program, completely and totally dropped the ball with Bobbette's kidney transplant.

Since January, we have been told that the first person on the list of potential donors was going through the final stage of testing. While this testing is extensive, including a psychiatric evaluation, blood work, etc., it seemed to be taking a bit too long. The donors who had made themselves known to us continued to check in with Vanderbilt every so often. They were told the same thing each time, "We're testing the first person. Don't call us, we'll call you."

With Bobbette sitting at five percent kidney function, we became increasingly worried about the lack of progress. They have been doing all they can to keep her off of dialysis. The veins in her arms are shot after years and years of blood work and procedures. The alternative to using the veins in her arms for dialysis would be to put in an abdominal port. They are hesitant to do that because of her previous liver transplant, and because that would essentially create an open wound in an immuno-compromised patient. (Her body doesn't fight infection due to the anti-rejection medications she has to take.)

Bobbette received a phone call earlier this week to tell her that she was being activated on the waiting list for a kidney. This wait is approximately three to five years long. After asking why, she was placed on the phone with Margot, her transplant coordinator. Margot informed her that she was afraid some of the donors had "slipped through the cracks," and that we needed to have the ones we knew of contact Vanderbilt. Thanks once again to the power of Twitter, several of the donors contacted Vanderbilt. What happened next was nothing less than shocking to me.

One donor was specifically told to stop calling; that Vanderbilt had this under control and they were testing the first person. Even after explaining that they had been instructed to call, the donor was still treated in a disrespectful manner. After several phone calls to Vanderbilt, the next donor on the list was finally contacted. We're hoping that the final round of testing for them will begin soon.

It took calling out Vanderbilt publicly on Twitter to get a response. Their media department requested an email with information. After sending that, I was assured that things had been sent to the head of the Patient Advocacy program at Vanderbilt. Thanks to some wonderful friends, we were also given the information that allowed us to begin the process of lodging a formal complaint with UNOS, which handles all transplants. And thanks to a mother who is high up in the medical world, we are looking in to our options with Joint Commission.

Personally, I have lost a lot of faith in Vanderbilt University Medical Center. Yes, they are supposedly doing what they can now to rectify the problems that have occurred, but that's only been at the non-stop urging of family and friends who knew enough to ask questions and not accept half assed answers. What about the people who don't have someone to do that for them? How many times has this happened before? And how many times will it happen again? A link in the chain is broken, and it needs to be fixed.