Kidney March-Take Two

Tomorrow morning, while many of you are still sleeping, or at the very least are in your cars, on your way to work, shaking your fist at the September traffic, I will be boarding a bus to Millarville. It is there that the 2012 Kidney March will kick off, starting hundreds of marchers on a 100KM journey over three days through the foothills of southern Alberta.

Tonight at the sign in/orientation meeting the executive director of the Southern Alberta & Saskatchewan.Branch of  The Kidney Foundation of Canada  told us a story. It was about a marcher from year one of the march, two years ago. This marcher named Didja, a dialysis patient who was actually dialysizing every night of the march at camp, was determined to make it every step. She was often at the rear of the pack but she didn't care. She was going to do it.

At one point during the last day, Didja climbed one of the larger hills, exhausted. When she reached the top she looked back and realized that for once, she wasn't the last marcher. There was another lady who had fallen behind her and was struggling up the hill. Didja proceeded to turn around, go back down the hill she had just climbed. She grabbed the arm of the lady who was struggling and helped her up the rest of the way. Together they made it to the top and kept on marching.

This story meant a lot to me for a few reasons. One, I am slow like a turtle so if you are looking  for me on the march route, I'll be somewhere near the back. Slow and steady wins the race - not that this is a race. But the thing that really resonated with me was what Didja did. Because over the last year, and certainly over the last few weeks, there have been so many people like Didja that have gone back and helped me up the hill (so to speak).

When I started to wonder if I was out of place in promoting organ donation, so many people stepped up to tell me I needed to continue. They shared personal stories that helped me remember the value in talking about my donation experience. They cheered me on and encouraged me to keep on keeping on. Sometimes when the self doubts get loud, you need other people around you to step up and be louder. And that happened for me which is great. I will always have cynics and naysayers in my universe, but a whole lot of people made them easier to ignore.

In recent weeks I was also starting to panic about raising the minimum amount ($2200) needed for the Kidney March. If you don't raise it by October, you pay the difference. Some of the donors I had last year weren't donating this year which meant I needed to find new donors. I'm pretty shy and don't have the largest networking base so this was extremely daunting to me. I made flyers and handed them out in my neighbourhood. Nothing. I talked about the march on Facebook and Twitter. Nothing at first. but then slowly but surely, donations started coming in. And within hours of my orientation meeting tonight, I hit, then exceeded that minimum donation. Huge.Weight Lifted.

I don't even know where to start in thanking my donors. They are all so wonderful to me for so many reasons. Over my next few posts about the march I'll probably get into the "why" but in the meantime, here are a few fun, random facts about my fantastic Kidney March backers.

• My "furthest away" donor is from Louisiana. Despite a hurricane looming, she still took the time to not only donate, but promote the march to her friends and family
• Four of my donors have had transplants. One liver, two double lungs and a kidney. People who would not be alive today if it wasn't for both living and deceased donors.
• I had 36 donors. Seven of them have names starting with J.
• Three of my donors I have never met in person
• Six people I have only met once in person
• I had donors from Edmonton, Calgary, BC, Ontario (many parts), Texas and Louisiana

Thank you to everyone who has supported me along the way. Tomorrow (and the next three days), I will walk for you. 

Another Choice

I've been a little slow in posting here for a few reasons. The first is that this summer has been very busy! I was involved with the CanadianTransplant Games (more to come on that in possible future posts). I also took a trip to Ontario to see the family and some friends. For many of them, it was their first time seeing me since my donation in June of 2011. While they all knew I was fine, I think it helps some people to physically see you to believe it. (Yes, a few did want to see the scars!).

The other reason I’ve stayed away from the blog I guess is what you could call a crisis of faith (of sorts) about what role promoting organ donation should have in my life. I’ve done a fair bit of thinking about it but still haven’t come to a place where I am totally comfortable.

This is the situation. There are a few people in my universe who would like me to stop talking about organ donation (and for that matter, marching for kidneys, encouraging blood donation etc). They don’t understand why I care so deeply about it, or why I want to spend my time talking about it, sharing success stories and educating people about its many facets. Sure I’ve explained it but the message isn’t being received. Now some people would say to just ignore them, who cares what they think and so forth. But it is hard when they are close to you and you value their opinion on things in general. It’s not that they don’t support organ donation – they’d donate on death if that was an option - they just don’t think I should be actively promoting it. And they are vocal about it, frequently telling me to stop and on occasion mocking it by calling me things like “organ girl” or implying  that’s the only thing I ever talk about.

I‘ve tried to get to the root of “why” they feel this way. There are several  different reasons I was given although two common ones seemed to stand out. The first is that they think it is weird to talk about things associated with body parts/death/illness. The second is reason is being as I/my family/friends have never needed an organ, I’m creeping on a cause that I have no business being involved in.

It’s tough. I’m not sure what to do to be honest. Yes, when you talk about organ donation, you do talk about body parts/death/illness. But you also get to meet and learn from some pretty interesting, inspiring people. That’s what I like about it. I’ve learned so much about science and the medical world – which is very cool to me. I love reading medical journals and websites and then taking that info and being able to make it relevant to the everyday conversation. On the flipside, I’ve also had a chance to learn so much about the human spirit and the strength people can find in themselves to carry on. That intrigues me as well and really puts life in perspective.

Yes, no one in my family has ever needed an organ – it’s true. Does that make me some kind of fraud, speaking about things I shouldn’t have an interest in? Some would argue my being a kidney donor makes me part of the transplant community. I think for others though, the fact I donated to a complete stranger should have been enough (and was weird enough all on its own). My involvement in the transplant world should have ended when I left the hospital. All the stuff that has come after it (the blogging, social media promotion, media stories, volunteering) is overdoing it, taking things too far. Is it?

Here is what I do know. In September of 2010, I suddenly had a strong feeling of something big being around the corner for me, something that would deeply impact my life and “make everything make sense” if you will. As flakey (and not me) as that sounds, the “kidney thing” was the start of that. The idea came to me (to look into living donation) and it totally made sense. I started writing about it, which again, totally made sense to me. I felt like I had found a purpose, something I could do to help other people. And it has continued. The funny part is, I’ve never been that person who really wanted to help other people. Not that I was a Scroogey Grinch;  I’d just never really volunteered for anything, I hadn’t really been involved with any kind of fundraising and I didn’t really have any “causes” I actively cared about. Donating a kidney changed everything for me. Two of my best  friends have both independently said that I seem to have found my calling. I’d never use those words but there is some truth to that. I love being involved in the transplant  and kidney communities, talking about it and sharing stories with people to raise awareness. Learning about the medical processes intrigues me. I get excited whenever I sit down to write a blog post or attend an event. Despite being shy in new social settings, I have loved meeting people involved in the transplant world and hearing their stories, asking them things I’ve wondered about transplant patients. I’ve met patient and donor families as well as some pretty amazing medical staff and I’ve learned a lot from all of them.

One of the people I met during the Canadian Transplant Games had an interesting comment about my involvement that has stuck with me. She said that in my situation, I probably have some advantages over people in the transplant community when it comes to raising awareness. She said that because I am not sick myself, didn’t receive an organ, nor am I worried about saving  a sick family member, people outside the transplant community might listen to me first.  She said “They might perceive you to be more unbiased - someone they can better relate to. Just like the kidney donation, you don’t have a specific person or reason you are doing it for. You aren’t getting anything out of it.”

Other than of course, the fact that I like to help and I have a passion for it. Despite that though, I've found myself lately quite hesitant to share organ donation news articles via Twitter or Facebook or even talk much in person about people or things I experienced at the transplant games. I know I’ve definitely had a case of writer’s block too despite having a lot of topics and stories to write about. I don’t want to stop what I’ve been doing the last year and a half (because I love it and think its important) but at the same time I don’t want to alienate people who are close to me either (because I love them and think they are important). I am hoping to find some kind of middle ground but so far, it hasn't happened.

Parade of Hope

Everyone loves a parade. There is excitement in the air, cheers, laughter and easy-going anticipation. For Calgarians, the Calgary Stampede Parade is the mother of all parades. People camp out overnight to secure a seat along the parade route. I've never seen anything like it - it just takes over the whole downtown core.

This year as part of my involvement with the Canadian Transplant Games, I decided to head down to the parade staging area to take some pictures of the float the Canadian Transplant Association was putting in the parade. I'm organizing their Facebook page and Twitter account and thought pictures would be a great way to help create awareness about the games and of course, organ donation.

Walking through the staging area itself was very cool. I've never seen so many different horses...or so many horses in one spot (there are something like 750 horses in the parade...I only saw a fraction of that and was impressed).  Eventually I found my way through horses (and one very giant bull tied to a small trailer) to where all the floats were waiting. I could spot the Canadian Transplant Association float no problem...lots of green! As I got closer, I couldn't help but be taken with it. It really did a fantastic job of telling the story of organ donation. The back part would be where several recipients would ride, waving, cheering and showing people what a second chance at life looked like. 

They had great shirts made for recipients which showed what they had received and when. It was a great visual. While I was watching one of the youngest recipients put on his shirt, I was reminded of one of the magical side effects of the games - connecting people with similar health experiences together. Being a place where transplant patients can feel more normal. When the boy had put on his shirt that said "Heart 2004" one of the moms of another little girl there said to her daughter  "Look - he has the Same shirt AND year as you". I remember what it was like being a kid that age and I can only imagine how neat it was for both the kids to find another kid who had a heart transplant the same year.

The car pulling the float was decorated in a beautifully simple tribute to the donors. I have to admit I was a little overwhelmed when I first saw it. While the donors were of mixed ages, the majority of them were so young, with so much life ahead of them. I confirmed later  what I suspected - that most if not all the photos were indeed deceased donors. It was sad to know that there was tragic situations that had impacted the lives of all these people. At the same time though, knowing that each donor may have donated to up to eight people (not including soft tissue, bone donation which can help dozens more), these pictures represented easily over 100 lives saved. Pretty inspiring. The donors are most definitely heroes, as are their families that made the choice to give that gift of life. I found myself wanting to know more about the people in the pictures  - who they had been and what made their families make the choice they did. It is an amazing legacy to leave.

Someone (not me) did comment a little later in the morning that perhaps some photos of living donors should have been added. I can't speak for all living donors but I kind of liked it the way it was. Sure, we are all donors but a part of me thinks deceased donors and their families are in a league of their own - this was an opportunity to let what they did be the focus.

A few family members of donors were there to be part of the parade and honour the gift their family member made. I briefly got to know one mother and neice who were there to honour their "Tiffy". Tiffany Lynn Cox was a 19 year old who had her whole life ahead of her when she died as a result of fire in 2009. Three years later, it was evident that their pain was still raw and still very much there.Their participation in the parade was part of the healing process for the family. As I listened to Tiffany's Mom talk throughout the morning about her daughter, the fire and her decision to donate Tiffany's organs, I was struck by how much she reminded me of my Mom. In reality they are nothing alike but the pride, the fierce love and they wanting to protect her daughter very much mirror qualities I have seen in my Mom over the years. What was also interesting was that Tiffany's Mom was not originally a supporter of organ donation. But when tragedy struck their family, she knew what Tiffany would have wanted, even if it went against her own beliefs. And in doing so, she said it has helped her immensely to know that Tiffany lives on in five other people. 

I met another Mom who was on the other side of the spectrum. Her son, Jason Letourneau, was born with a major heart defect and spent much of his childhood travelling from Saskatchewan to Sick Kids in Toronto as well as Edmonton to get treatment. When he was 22 he received a heart transplant, a gift his family will be forever grateful for. He worked hard to honour that gift, working and volunteering for many community organizations including the Canadian Transplant Association. Sadly, Jason passed away early 2012 of Pneumonia. "His heart was still doing fine" his mother boasted to me.  "He just was unlucky and seemed to get everything else...H1N1, you name it". She said even though they lost him at 40, he had lived so much longer than they thought he would as a child and they were thankful for that transplant every single day. Being so close in age to Jason, I couldn't help but reflect on how much living I had done in the last 18 years. While forty is too young to die, those 18 years of quality life post transplant he had were an amazing gift he wouldn't have had otherwise. We can do a lot in 18 years, especially we we make the most of everyday. When his Mom learned of my social media love/involvement she lit up and asked if I had known Jason. He had loved Twitter and all that "other social media stuff". I knew of him but hadn't known him. I wish I had gotten the chance.


At the last minute, I ended up having an invitation to walk along the float in the parade. It was truly an honour and a once in a lifetime experience - how could I say no? What was most wonderful was how awesome Calgarians were all along the parade route. When spectators realized what our float was all about, the cheers and clapping grew louder. People yelled out things like "Yay organs!" and "Congratulations transplant people" and "Organ donation rocks!". I found myself a couple of times overcome with what I have become a part of, as a donor. Yep, there I was, tearing up in the middle of 6th Ave, walking in a parade, somewhat behind a dancing horse mascot and ahead of a marching band. It was a pretty surreal, but awesome experience.