Transplant Community

A little more than a year and a half ago, I stumbled into a world I had never known before: The Transplant Community.

It's a world made up of everyday people, families, friends, strangers and of course doctors and nurses. In the beginning, my view of the community was mostly medical staff and a small group of them at that. Over time, closer to my donation, I met a couple of other non-directed donors like myself. Post surgery I finally met one or two kidney recipients as well as kidney patients living on the edge of the community, waiting for their transplants.

A few months ago I threw my name in the hat to be involved in some kind of volunteer capacity with the Canadian Transplant Association, specifically with the Canadian Transplant Games. The games are held in a different city each year and this year happens to be Calgary's turn (July 16-22). I actually remember my living donor coordinator telling me about the games just weeks after my donation of Leftie, and how it would be great for me to attend the donor events as well as perhaps volunteer too.

I've been doing what I can to help out with the media team for the games, including helping with a fundraiser they recently did at Schanks here in Calgary. In doing so I've had the opportunity to meet a handful of "non-kidney" organ recipients. What an amazing experience. It is so refreshing to meet people who don't take life for granted. They've all faced some pretty serious battles in their lives and were given a second chance through someone else's gift. To say they are inspiring  doesn't really do it justice. They are so open about both their gratitude as well as the stories behind why they needed transplants. Medical jargon is tossed around the way most people would chat about sports and weather as is their appreciation for everyone and every thing that played a role in where they are now. It makes for great conversation!

One of the interesting things I've observed along the way in this community is how people define and introduce themselves by their organ related situation. For example, I met a volunteer who was introduced to me as "mother of a double lung transplant". Others introduced themselves as "double lung" or "kidney transplants". At the fundraiser, I found myself frequently being introduced by others to others as "kidney donor-to a STRANGER". (Remember the blinks I used to get on the stranger part? Yeah - they happen in this world too! )

Through these introductions and conversations I've been fortunate to hear a lot of great stories of hope and determination. I've learned a lot about diseases, some genetic and some very random, that have required people-many of them younger than me - to need transplants. Things like Cystic Fibrosis, pulmonary fibrosis, pulmonary hypertension and segmental glomerulosclerosis (Imagine trying to remember that last one for Googling later while at a lively bar function!). I've learned that there is such a thing as "surgeons choice" too for lung transplants (who knew there was more than one way to get that done!). It is inspiring to hear what recipients can do post transplant (almost anything anyone else can do) and what they need to avoid (buffets, large crowds, sun). More than anything, the stories these wonderful people have shared with me have reminded me that nothing in my life has been significantly hard and that we could all learn something about the human spirit from transplant recipients.

I'm not sure where I really fit into this community...I kind of feel like a visitor rather than a new arrival, which is fine. It really is a world focused on recipients (rightfully so) and their families. They've all been through so much.. It's also about celebrating the idea of donor families (most deceased donor recipients in Canada never know who their donors were) and the ultimate choice they made that made these second chances possible. Oddly enough I haven't met any living donors through the Canadian Transplant Association pre-games activities as of yet. I know we are a small group, with non-directed donors being an even smaller sliver of that. It will be interesting to see if I meet any at the upcoming Donor Family Luncheon that is part of the games.


Organ donation and the need for more donors takes on a whole new meaning as you start to surround yourself with people who are alive today because of organ donors. Meeting the friends and families who hoped and wished and prayed for a miracle for months if not years is also powerful. They fiercely support and rally around each other. They believe so deeply in raising awareness so that other can get their second chance too. In a way, the Transplant Community in Canada is a multi-layered family. I feel like if more people could get a glimpse of this world, get to know this giant "family", we'd see a rise in Canadians registering to be donors. I'm hoping that is something I can help with.

Presumed Consent

There is a movement forming in Canada to get the government to mandate a "Presumed Consent" organ donation policy. Presumed consent or "opt out" organ donation essentially assumes that everyone is willing to donate their organs in the event of brain or cardiac death unless they have opted out.

The presumed consent system is essentially the opposite of what we have now in Canada.  Currently, if you suffer brain death, your family is given the option of "opting in" or donating your organs. Also, depending on the province you live in, you may have had the option of registering your intentions via an online registry. In provinces without an online registry, you have the option of indicating your wish to be an organ donor on your drivers license. In the end though, the decision lies with your next of kin.

There are currently 24 countries in Europe who have adopted some form of the "opt out" model. In some of those countries (Spain, Austria for example) the presumed consent model has meant an increase in organ donors. A few countries actually have a lower than average organ donation rates (Sweden for example) but on average, countries who adopt this type of donation system do see higher donation rates. This is especially critical for people waiting for hearts, lungs, pancreas and some liver patients as cadaver donors are their only option. It also greatly benefits those waiting for kidneys (what 75% of Canadians on the transplant list are waiting for) as kidneys needed far exceed the number of living donors each year.

If Canada was to adopt an opt out system, advocates (including the Canadian Liver Foundation) believe the country could boost its donation rates, which is one of lowest in the world. Currently only 13 out of every million Canadians becomes an organ donor, compared with 20 per million in the U.S., and more than 31 per million in Spain.

The big question is this: are we ready for it in Canada? My opinion is a bit mixed. I think from a belief and attitude perspective we are - in some ways. When asked, most Canadians believe organ donation (in general) is a good thing. Most Canadians would have no problem accepting an organ if needed. However many Canadians simply haven't taken the time to register their choice to be an organ donor and have not discussed their wishes with their families. It isn't top of mind. Which obviously is part of the cause of our low donor rates. An opt out system would be an improvement in that regard. Which would definitely save lives.

Where I think we aren't perhaps ready is from a registry perspective. At this point, we don't have a national registry where people can note their intentions. Some provinces have great online registries while other provinces, like Alberta, are lagging substantially behind. In my mind we need a national database capable of housing the preferences of Canadians in regards to organ donation. The registry would need to be accessible to hospitals across the country somewhat similar to the UNOS system in the U.S. (but better of course). We would need a well defined national transplant program  instead of provinces working in health care silos as they do now. There would need to be a greater ability to coordinate the sharing organs across provincial borders as well. (I do know that transplant doctors, coordinators etc. do meet and share best practices across the country but it needs to be formalized and improved).

The other issue I see preventing a presumed consent system right now is the same issue that plagues our current system: awareness/apathy. There are still so many misconceptions about organ donation. For example, some people still think that religion prevents them from being donors or that doctors are less likely to save people who have registered as organ donors (not true on both counts). Under a new system, this could result in many people opting out due to a lack of understanding or fear. At least under the current system, doctors and coordinators can approach donor families  to get consent and can perhaps talk through some of the fears/misconceptions with the families of potential donors.

Most people don't have any idea what opt out or presumed consent means (here is a U.S. site explaining it). While I fully support the idea of a presumed consent system (it is a good idea and critical to saving more lives), I think we need to better educate Canadians on what that means (and doesn't mean) to them. If we expect Canadians to get on board and support the petitioning and lobbying of the government to change the system, we need to give them the "why". Without education in place, we run the risk of generating more apathy towards organ donation amongst Canadians or worse, decreasing the amount of organ donation support we currently have. I think petitioning the government is just one step of many to improve organ donation in Canada and it needs to involve an educational component so that people understand how it could improve things, while not impacting their rights and freedoms  or medical care.

I am confident we can overcome these hurdles in time-sooner rather than later with more national focus and collaboration from our medical systems as well as organ donation advocacy groups. The good news is that organ donation seems to be getting more an more press as time goes on which hopefully will create the momentum and awareness this cause needs to improve donation numbers, get more resources put towards improving the current system and so forth.

If you are ready to support an opt out system of organ donation in Canada, you can sign a petition here. To register to be an organ donor under our current system, here's a great list of links by province. Don't forget to talk to your family about your wishes.

Would love to hear your thoughts: Is Canada ready to start talking about a presumed consent organ donation system? Do you support a presumed consent system?

My Sticky Story

"Write what you know" was something I was taught a lot growing up. There is good reason for it too. Writing about things that mean something to you, whether it be football, cats, food or cars, helps create "sticky stories" or ideas. The idea of a "sticky idea" or story comes from the book Made to Stick: Why Some Ideas Survive and Others Die. It's a great way of explaining why some things stay with us, while others don't. Basically, a sticky story has a number of the following features (naturally, not in a fabricated kind of way-you can't fake it or it won't work):

• Simple — find the core of any idea
• Unexpected — grab people's attention by surprising them
• Concrete — make sure an idea can be grasped and remembered later
• Credible — give an idea believability
• Emotional — help people see the importance of an idea
• Stories — empower people to use an idea through narrative

Anybody can write about anything, but when you are passionate about a topic, people can feel it as they read, making your ideas more meaningful and engaging (sticky). It also means that readers will be more likely to share your ideas with others. As it turns out, I wrote a sticky story, by sharing an experience that was near and dear to me.

In February, I wrote a post about one of the main reasons I opted to become a living donor last year: the loss of my dad to cancer. It was a very emotional blog for me to write and I hoped it would explain my decision to donate in a way that might get other people thinking about the idea. I shared the post on social media (Facebook and Twitter), received a few comments from friends and life moved on.

Three weeks ago I received an email from someone who follows me on Twitter. She explained to me that she read my post back in February and it had stuck with her over the last few months. Being in communications, she was wondering if I'd be okay if she pitched my story to her media contacts and maybe they could include it as a Father's Day piece. She thought it would be a great way to increase awareness and possibly encourage others to become donors. I agreed and she put things in motion. It was really wonderful of her to take this on - I can't begin to express how much I appreciate her efforts. 

The Calgary Herald was interested and an interview was quickly scheduled.They ran the story over the weekend, for Father's Day. I think the reporter did a great job in making it even more "sticky". So far it has been shared at over 140 times (minimum) via social sites and hopefully has encouraged people to think about organ donation in general. At the very least, I hope it made people appreciate their dads a little more on Fathers Day. 

When I first started this blog it was for me -  a journal of sorts. It quickly became a tool for my friends and family to better understand my decision to become a non-directed donor. Along the way, I've had a doctor, a publisher and a couple of other people suggest (or in some cases insist) I write a book about my experiences to raise awareness about organ donation in general. I am not quite in a place where I am ready to write that book, but I'm getting closer.

My best friend made the comment the other day: "You do realize this is your calling right?". I guess it is. I love it and I am passionate about it. I feel like I can make a difference.In the last year, I feel like I've been presented with a huge opportunity and responsibility to speak to the need for more organ donors in Canada.

Earlier in the week, there was also another article in Metro Calgary by another reporter who had read my anniversary blog post. I am really grateful for both the Calgary Herald and Metro stories this week. Being a communications type professionally, I appreciate how lucky I was to get not one but two major publications to share my story and help put a face or a "sticky" story to organ donation.