Hello My Name is Lauren and I Have One Kidney

When you donate a kidney, the medical folks tell you that going forward, you'll need to tell and remind ALL health care professionals (sometimes repeatedly) that you only have one kidney. This also applies to lab techs, massage therapists, dentists etc. This is so they avoid giving you drugs or treatments that can harm the remaining one. Also, in the event of an abdominal trauma, they will know upfront that there isn't a back up kidney in there.

In the beginning (post-donation) I was pretty good at communicating this. But I was met with one of two reactions...either "Who cares -  that shouldn't impact this medical treatment/issue" as though I shouldn't have brought it up or the onslaught of a thousand questions like "Who got it?", " When did you do it?" ,"You gave it to a stranger?". That kind of thing. On one occasion, when I brought it up halfway through an ER visit because I knew they wanted to do a CT Scan which uses a contrast dye that can impact the kidneys, the resident seemed really put out by the news. "Well where did it go?" she had asked in exasperation. "Now I have to check with my attending!".

Overtime I have become more reluctant to bring it up unless I'm sure it has relevance to the task at hand. I recently had a conversation with some of my fellow boot camp exercise participants about how long we had been attending the program. I had started right before the surgery, about two months and had returned about five weeks after surgery. One of the bootcampers remarked that she remembered how I hadn't told any of the trainers I donated a kidney. She wondered why. I had mentioned that I had had surgery (I think I had mentioned abdominal to at least one of them) but she was right - I hadn't really wanted to mention it.

I think quiet frankly I was, and still am, hesitant to mention it sometimes because I don't feel like talking about it or answering the questions I inevitably get. Don't get me wrong, in the right venue I welcome the opportunity to talk about it and to raise awareness about living donation.  But other times I flat out don't want to bring it up.

Today I had an ultrasound of the lower abdomen scheduled to check out my girly regions (I have bad time of the months - too much information?). I didn't think I needed to mention the kidney as they are a fair distance away from what is being looked at in the body  I was certain if I mentioned it I'd be told they don't need to know that, and they don't care. So I didn't say anything.

The exam started and she examined the lower abdomen as expected...the she went higher up on the right side, but not quite kidney height. Then she went to the left side. Examined for a bit and made me roll over. She hadn't done that on the other side. After several minutes, she asked, in a rather panicked tone, if I had ever had surgery. I told her about the kidney. She let out the biggest sigh I have ever heard. She had been looking for it and couldn't find it. Oooops. She seemed so... overwhelmed, I felt bad. She told me she had asked me to roll over because sometimes kidneys migrate up and down the abdominal cavity. I told her no, it migrated right out of the body.

She didn't really appreciate my joke. I guess I need to rethink my kidney disclosure policy.

David

David receiving a bronze medal at the
2012 Canadian Transplant Games

Back at the start of the summer, I attended a fundraiser for the Canadian Transplant Games. I’m pretty shy at social events and I hardly know anyone there (and those I did know were really busy organizing the event). I did my usual Lauren trick of finding a good people watching spot and leaned against a wall, nursing a beer. I noticed one guy almost right away. It was his hat. It was a simple ball cap, but the front had October 20, 2008 on it, and something about lungs. October 20 is my birthday, hence why the date stood out for me (although the year was slightly off  -  ha!).

Perhaps he saw me reading his hat or thought I looked like I needed someone to talk to so he came over. His name was David and he had indeed received a double lung transplant, on my birthday, in 2008. He was around my age, maybe a bit older (I've lost the ability to guess these things). He told me about his life before he got sick, what caused him to need a transplant (pulmonary fibrosis -I had to Google it as I had never heard of it) and what life was like since his transplant. He was a little gruff and seemed a little grumpy (and others later told warned me he could be negative at times or at least that had been their experience. But I never saw that – when I spoke to him, he was always an optimist. He had been through a lot over the past number of years and he was grateful for his lungs and that fact that he had more time with his wife and his young son. A lot had changed for him (he had once had his own business for example) and although he was living a very different life, he was quietly and profoundly thrilled to have the second chance.

Over the course of the Canadian Transplant Games I got to know him better. I learned that yes, he could be a bit gruff, but he was also good natured, funny and sympathetic. He loved his family so deeply and talked about his son whenever he had the chance. We connected on social media -  first Facebook and then I saw him learn and embrace Twitter, using it to promote organ donation. It’s funny how you really can get to know someone over social media, even if you have only met them in person once or twice. Many of us involved in the Transplant Games have formed great friendships after the games using these channels, I count David as one of mine. David even went as far as sponsoring me in the Kidney March last year to show his support which meant a lot to me.

David had hip replacement surgery about six weeks ago. A negative side effects of anti-rejection medication is a condition called avascular necrosis, which seriously diminishes blood supply to the hips. While otherwise healthy, some transplant patients end up needing surgery to fix this and similar issues (I am not sure if this is why he needed a hip but I do know it is common). David's surgery, by all accounts, went really well, but somewhere in the recovery process days later, something went wrong with one of the after treatments. He fought hard for weeks to stay with his family but in the end he lost the fight. David died Thursday.

I’m sad. I’m sad for David because he already had struggled so much and had come out the other end okay, only to be broadsided by something else. This wasn't an infection or the lungs rejecting…from what I was told it was a pretty rare complication unrelated to being a transplant recipient. I am sad for his wife and his mother and everyone else in his life. I’m especially sad for his son. Every kid needs their dad and he’s not going to have his for the better part of his childhood.

I’m sad for all the transplant friends he made too. I know for a lot of recipients, they are all too aware of how fragile life is and how quickly things can change. David’s death  probably hit closer to home for them than most. I hate seeing some of our mutual transplant friends go through that fear and worry that something might happen to them. Even though David’s situation wasn't necessarily directly linked to having a transplant, I can see where it would be making other recipients look over their shoulders a bit more.

It doesn't seem right that this happened. I’m going through pictures taken at the games and it just doesn't make sense to me. I fully expected to see him at other events (link the upcoming Transplant Trot) and that he’d be back posting on Facebook soon. I didn't know him well, but I knew him well enough to know that he and his family deserved more time together.

http://www.bowriverfuneral.com/index.php?f=obit%2C271

Getting the Word Out

Through my donation and the social media world, I've met a lot of great people involved in the transplant world. One of those people, whom I've mentioned before, is Amy. She donated her kidney to a family member of someone she didn't know too well after she saw a tweet about "Tiny Mom" needing help.

There seems to be a commonality among many donors (including Amy and myself) that donating was the first step on a much larger path for them.In choosing to donate an organ to someone in need, they found their calling in promoting organ donation. I am not sure that promoting is really the right word because it's more than that. Sure, we'd love to see more donors (where it makes medical sense) but it's also about supporting other donors as well, past, present and future. It's about making the systems donors navigate better. It's about transparency in the process. It's about making the journey the same for donors (same information, same treatment, same level of safety) whether you donate in Arizona or Alberta. It's about finding a way so that all the great things some programs are doing are shared and implemented in all the other programs at least across North America (I'd love to take on the world but let's be realistic).

Amy is taking a big, giant leap towards this by making a documentary about all of the things above and more. Here are her goals:

1) To educate the public on the huge but addressable problem of chronic kidney disease and kidney failure and the option of transplantation and living kidney donation

2) To create a film documenting real stories of living kidney donors across the nation

3) To highlight the safety of kidney donation

4) To highlight the additive potential of public awareness and public action

5) To continue to use Social Media to reach across distance to achieve success

6) To share personal and revolutionary stories of changing attitudes

7) To reveal the unlikely players in a very apropo movement

I am very excited and honoured to be a part of her project (the lone Canadian!). She'll be filming later this spring in a whirlwind tour of North America. Never in a million years did I ever think my choice to donate would have brought me here. It's exciting because I feel like I really can make a difference, even though I may never see what that difference actually is. I'm also excited because the more I hear other people's stories, the more I appreciate that despite the process issues beyond their control, my doctors and donor coordinator at Foothills are running a pretty fantastic program. They are doing a lot of things right and actually as a country, Canada is leading the way in best practices in a lot of ways. For me, this will hopefully be an opportunity to talk about how we do things here, from my perspective.

To learn more about the documentary, check out the link here. A little fundraising help is needed too, for expenses, if you are so inclined. Either way though, follow along in the journey on the website or on Facebook and be sure check out the documentary when its done.