Monday, July 2, 2012

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.