Crewing the Kidney March

From September 9-11 this year, marchers from across Canada will congregate in one of Canada's most beautiful regions and will walk 100KM in 3 days in support of the Kidney Foundation of Canada. Shuffling along from Kananaskis Country to Calgary, each participant will have raised at least $2,200 for the fight against kidney disease in the 2011 Kidney March.

I didn't have enough time to get my act together post surgery to raise $2200. Although to be honest if I could raise it in the next 3 weeks I would totally do the walk. So instead I plan to crew the event for the three days which essentially means being part of it, but from a volunteer worker perspective. I still need to raise $300 to do that-so if anyone is interested in sponsoring me, you can check out my page here:

My Kidney Fundraising Page

I'm really excited to be a part of this event. Last winter I was lucky enough to attend a celebration party for last year's Kidney March. At the time I felt like a shy outsider in the community and a little bit like a party crasher-I was a couple of months into my journey to become a kidney donor. I knew no one on dialysis or with kidney disease. I knew a quarter of what I know now about kidney disease. Now I feel a little more like I belong, although even the crew application doesn't have a category for donors (they had one for kidney patients, family, medical community...). I'm hoping that by being involved in this march I can get even more perspective as to what life with kidney disease is like, and maybe be inspired with more ideas about how to raise awareness of living donation. I do wish I was walking -you never know I guess...but being involved period will be fun and rewarding. I'm also looking forward to meeting some people whose stories I've discovered online. I am sure it will be an emotional experience for many but something that will only inspire me to do more to support living donation

Rolling Up My Sleeves

Today I rolled up my sleeve for the first time since last September (I can't beleive it was that long ago!) and let Canadian Blood Services (CBS) have some of my O+ blood. As the blood donation coordinator for my workplace, it was nice to finally be boarding the Lifebus instead of just trying to rally the troops.

The whole eight or so months I was being tested prior to my kidney donation I was frequently called by CBS when they were short on donors. Most of the time I missed the calls but was amazed at how frequently they called me. Finally back near the end of June they called and actually got me and I let the lady know I was not able to donate until August. She asked if it was a tattoo/piercing thing (um no) and when I explained about the kidney thing I heard her shuffle papers, looking for the response to that in their script aids. She ended up putting me through to a nurse so I could get a note on my file and limit the calls for another month until I could donate. (For the record I was given the all clear anytime after July 7th by the living donor program but I personally wasn't ready yet as I was still tired and not 100%). Once the nurse was on the phone she too didn't really know how to handle a kidney donor but once I assured her August was fine she noted it on my file.

However I discover this morning she put the hold on for longer so I had attempt to override that this morning with the nurse at CBS. I had checked off the box about being under a doctor's care in the last 6 months, explained verbally what that was for. She got out this giant binder to I assume see what the rules were around donating after that kind of procedure. I was shocked (OK not really) that kidney donation was not in the book. She apologized and had to go ask someone-totally understandable. She came back and said I should be good to go based on my information about the program being okay with it. She did warn me that the next 2 times I give blood (assuming I come in 56 days apart) they might be equally confused about how to deal with my surgical history.

 I was taken to a bed and they started to set me up for the donation. The nurse told me she had to check one thing with one other person before they could start. I could see her reviewing my file with a lady in the back and after a few minutes she came and gave the go ahead to the "blood takers" (sorry-I have no idea what these people are called). 

A coworker was beside me and he announced to the "blood takers" around us that they all better be nice to me because I just donated a kidney. They all looked at me (blinking...hmmm...where has that happened before?!?) but other than one asking if I donated to family, there weren't many questions. It was kind of nice. There were lots of comments about how nice I was to do that and how they all knew someone who was waiting for a kidney or who had received one and how important it is. Thankfully at least the concept of non-directed donation wasn't foreign to them so I didn't have to get into that. One lady had lots of questions about what the surgery was like, my recovery and how that went-not a question I usually get. They have a TV showing blood recipient stories with pictures-she had met some of the people in the slide loop and told me about the,. She asked me if I would ever get to meet the recipient and seemed disappointed when I said no. I reassured her that "you never know"-it seemed to make us both feel better.

The donation itself was fine. I've never felt woozy or weak after a donation although this time I was more tired right away than I usually am. I did feel a bit light headed but not to the point I was in danger of fainting. I made sure to drink extra fluids this time around as that seems to prevent any post donation side effects.

There was something about this appointment that really made me feel like life is getting back into some kind of normal pattern and that I myself am become more of a "normal" person again instead of being "organ girl" as Charlie would say.

The Need For a National Living Donation Plan

Why aren't there more living donors?

This has been a question my brain has been kicking around for awhile now. Granted, donating a kidney is not medically possible for everyone but why don't more people try? People give blood everyday, they donate money to charity. They take part in 3 day walk-a-thons and bike rides. People are willing to commit hours everywhere to support organizations in their communities.Yet living donation is rarely considered, especially the notion of donating to a stranger. Which is too bad because currently over 3,000 people in Canada are on waiting lists for a kidney transplant, according to the Canadian Organ Replacement Register (CORR). With about 35,000 Canadians suffering from kidney disease that number never goes down and has the potential to go even higher. Kidney disease can't be "fixed"; it can just be managed  with diet, medication, exercise (all depending on what the cause /illness is) until the kidneys get to the point of failure-then its dialysis till transplant or, sadly, death.

Is it just that the concept of living donation, especially in Canada, is relatively unknown? I think that is a big part of it. Living donation  has been happening in Canada for at least 40 years, although the option of donating to a stranger has only really become available in the last 5-7 years. Add to that that there isn't a really strong national program or body to promote living donation and, well, little-to-no awareness ensues. Did you see where I said "lists" above, in reference to the number of people waiting? If you need a kidney, you go on the list for your local transplant program. There also isn't a national list (like UNOS in the States) although Canadian Blood Services has been operating a paired donation registry since 2009. That's a bit different though as it does not incorporate all the people waiting for transplant, just incompatible donor-recipient pairs (where you want to donate to a love one but aren't a match but are still wiling to donate to another person so long as your family member/friend get a kidney) from across Canada. The registry compares the medical information on all the pairs in the database and identifies pairs that might be able to exchange donors. When a non-directed donor like me comes forward, they are sometimes added into the registry in order to create a domino chain.

My point is that I think there needs to be some kind of a national play developed out-a national living donation plan. First off, they need to get the logistics and process of these donation programs nailed down and make them the same across the country. Right now its about a dozen or so programs doing their own thing, with different policies, programs and testing processes in place. Some areas have more developed, robust programs in place while other (for example Saskatchewan) are struggling to keep their program open and running. If operationally things aren't consistent, then they will never get to a place where they can promote Living Donation. Secondly they need to promote awareness on a unified, national level. I kind of see where that is becoming an issue with deceased or cadaver donor campaigns and I'd hate to see that happen with living donation promotion as well. This year, Ontario launched the beadonor.ca campaign  to encourage all Ontarians to become registered organ and tissue donors and educate them on the impact of their generous decision to give. While this is a fantastic initiative, how hard would it have been to make this a national program? Even if registrant's information (behind the scenes) were funnelled into different "lists" managed by provincial health agencies based on their address information? It just seems silly not to mention redundant to have each province needing to develop out their own, likely very similar, ways of recruiting donors.

Picture a chain of restaurants, all of course using the same branded name, but each is developing out their own menus, way of operating and marketing strategy. It doesn't take a business degree to know that it isn't cost effective or the most logical way of getting things done and that they'd be far more effective joining together. There can still be slight regional variances but by sharing best practices and creating some standardization, everyone benefits.

I understand that there was a National Task Force on living donation set up a couple of years ago involving, doctors, nurses, program coordinators etc. I am curious to see if a national solution is something they are working towards. If they are, it would also be great to develop a program that allowed for non-medical staff involvement too-donor and recipient support/advocacy roles. Either way, a national strategy is certainly needed. I hope it happens because I think it's the best strategy, that in the end will lead to more people being helped.

And P.S. it's probably cheaper for you, governments!

Testing Differences

A few weeks ago, I made a new friend. I haven't actually met her in "real life" but she found this blog and contacted me. We've chatted with each other a few times now.  We'll call her Jess. I'm really excited because not only is she an interesting person but she's also on her way to becoming a living donor-(in Canada!!)-and has agreed I can share parts of her story.

Jess lives in the same province as I do, although she is in a different part of it. She entered the program in October 2010 (like me) and was slated to donate as part of a chain around the same time I donated Leftie. However due to some matching logistics, she has yet to have had her surgery. What I am finding most interesting about my conversations with her is the already apparent differences in the testing and process she has gone through. While I would expect there to be slight differences from province to province, I truly expected the programs in northern vs. southern Alberta to be the same, especially given that we started at the same time, are of a similar age (plus or minus) and are both female. I'm not sure why the tests would be different-kidneys are kidneys and I would think they'd want to equally mitigate patient risks throughout the various programs?

Here is how we were different-sometimes the differences were just technique, but in other cases there are entirely different tests given (or not):

• Jess had had a renal CT scan rather than a MRI
• For her Renal Scan, she had to lay down for a while rather than stand for the three minutes as I did (she also didn't get the dye stuck in her arm-lol!). 
• Jess did two separate 24 hour urine tests (I feel 50% of her pain as I only had the one). She however was not instructed to put the urine jug in her fridge as I was. At least they gave me the tool (hat) to pee in though-she didn't get one of those.
• She didn't have to do a 24 hour Blood Pressure assessment (instead she just to have four separate readings over three days). 

I'm definitely going to compare notes with her further as I think it would be a great exercise to explore the differences. Perhaps when I am finished, one of the programs can take it to the national committee/task force to look at what standardization could be done-especially with more donors travelling out of province to do paired exchanges. If there are others out there that would like to send me what their experiences were, that would be great.

I think consistency protects the patients and makes the programs stronger. It also might potentially prevent last minute "surprises" when tests maybe missed by one program are requested by another hospital who will actually be performing the surgery. And I can tell you as a donor-the more you know what is going on ahead of time, the better the whole journey is.

What's Next!?

It's been 2 months since Leftie the kidney departed. Hard to believe in some ways and in others its seemed much more time has passed.

I'm feeling great. My energy levels are almost back to where they were although I still have some days where I suddenly feel like I've climbed a mountain and need to sleep for days. Thankfully a good 6-8 hour night of sleep always makes that feeling go away. I can eat 98% of the time without feeling sick (and yes, I can now eat more than yogurt and oranges). My incisions are now purple lines on my belly. Overtime they will fade but truthfully it doesn't really matter to me because a) I will never be a bikini person and b) I am damn proud of them. They will always reminded me of the leap of faith I took and if I accomplish nothing else in my life, this was something I can be proud of.

I've started running and for the first time in my life I am enjoying it. I am slow, determined and am fairly certain I don't look completely awkward doing it. Every once in awhile if I push myself a little too hard I get a stitch and/or a pang in my upper left abdomen, somewhere just in front of where Leftie used to hang out. I figure right now that is probably the weakest part of my body so its the first to let me know when I am doing something a little physically stupid. I also know that it too, like my scars, will fade with time.

I am feeling emotionally stronger than I was before the surgery-maybe stronger than before I even decided on this whole crazy journey. I think some of that comes from setting a lofty goal and after a lot of hard work, reaching it. I think through this process I've learned a lot about myself I never knew, but more importantly found parts of myself I forgot I had. I feel like I am ready. I'm just not sure for what.

I made a promise to myself (and through this blog I suppose other people) that I would do what I could to create awareness about living donation, make people understand how many people need it and how easy it is for many of us to help. I'll be honest I have no idea exactly how I'm going to go about that or when I will know that I've accomplished it. I'm still trying to figure out what exactly is next for me and how I am going to find my own way of making a difference in all this. I suspect I will need to create some of my own opportunities but that some will also potentially find me (let me know if you know of any!).

I do want to take the opportunity thank everyone who has been along for the ride with me, whether you've just stopped in from time to time as a stranger or have felt every bump along the way. I'm sorry if this comes off as sappy but I've always believed thank you are the most underused words in the English language and I need to do this.

To my family, both my birth family, my "real family" and my "in-laws"-regardless of when you joined the party, you have cheered me on with a proud enthusiasm that has more than once taken my breath away. To my friends, especially Sally and Sarah, you have listened and asked all the right questions at the right times. You've reminded me why this whole journey is important. Along the way I've made a few online "kidney" friends and I cannot explain how much your tips, thoughts and feelings have helped me before and after the surgery. And while there are probably many others worthy of thanks, I hear the music playing and I'm about to get the proverbial hook off the stage so I'd like to finishing by thanking Dr. S and Tina, for showing me and sharing the passion they have for what they do, for being real and for making this for me, more than just donating my kidney.

I'm excited for what is coming up around the corner and I hope you'll stick around for the rest of the trip.