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Saturday, June 18, 2011

Is No News Good News?

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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March 10, 2010

No news is good news with Gary...but with Lauren...is it?
In a matter of a few hours it will be a week since I completed what I think (hope?) was my last test. I haven't heard from anyone at the program since my last email to the coordinator indicating the blood pressure test had been arranged. She did mention one or two of the blood tests might take a little while to come back but it didn't sound much more than a week.  I'm wondering (of course) what is going on or if my file has just been sitting untouched either waiting for results or for the right people around to read them. Luckily I've been very busy at work so haven't had as much time to think about it but the thoughts are creeping in.  I've also started dreaming about hospitals, doctors and operations.

Is no news good news?  I don't know. I'm still feeling less confident about the whole thing. I had hoped that would rally and my opinion would change on that with sometimes between me and that last doctor visit. But it hasn't.  I'm feeling so disconnected from the whole process and end goal right now it doesn't even seem like it was ever real. I still want to donate and ultimately help someone but it just seems different.

I've spent sometimes in the last while thinking about how I'd feel if it is a no. I think I will be more disappointed than I previously thought I would be. More so I think I'm going to feel like I failed in someway although this is definitely one of those cases where trying was a success in itself. But I'm still going to blame myself for being less than perfect. I'm kind of curious-if numbers are slightly off in one of these re-test or new test categories and its something weight related or environmental, can I work to improve that and then retry?  Would I start from scratch or just have some tests that need a redo? And could I even put myself through that again? That part I'm really not sure of.

But yet again, there's nothing I can do to move this along...wait and see, wait and see.

Work-Life-Balance

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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March 8, 2011

One of the cool parts of this process which I've mentioned a few times (and you would probably see in just about everyone else's blog or story who is part of living donation) is the fact that you get to do a lot of medical tests that you normally wouldn't face unless something was really wrong with you. I  think the 24 hour blood pressure test is definitely one of the more interesting tests I've had to do, albeit somewhat inconvenient. It was a really good reality check for me on many levels.

When I was given the opportunity to see the graph of my results by the nurse at the Hypertension clinic, it was right there in black and white: Work stresses me out.

Now granted, walking around buzzing and beeping in an office setting all day is going to add stress. Having to skirt around why I was wearing it or try to tell people in 30 seconds or less I wanted to donate a kidney to a stranger also bumps up the BP. And having some of the projects (and the crazed project team members) I have going on looming and lurking as they are, also can cause the extreme spikes I saw on the screen. But to take my regular blood pressure, which is low normal on a regular day and make it essentially stay above normal from the moment I started walking to the office to the minute I got in my car at 4:30 means, plain and simple, work stresses me out.

Now when you become stressed, your heart rate increases and your blood pressure does increase for a short period of time. However, as soon as your stress levels decrease, your blood pressure does tend to return to normal. But if you remain stressed for a long period of time, it is possible that your body could artificially induce high blood pressure. Not good.  I kind of started to wonder how many days in a week I had this going on. I wonder how many people around me, are working at this elevated level 5 days a week and just don't know it?


Don't get me wrong.  I LOVE my job. I, for the most part, like everyone I work with. I am hugely enjoying the challenge of building a new website and moving into my role as the eCommunications advisor for the bank. But I know myself and my short comings too. I sweat the small stuff. I worry about every little detail being right and on occasion put way more on my plate than I can probably handle (but I seem to manage to eventually get it done). I often find myself in positions where I am needing to do a lot of learning as I go and still lead projects and tasks. I concern myself with the big picture rather than whats right in front of me. I don't take lunch or breaks on an average day. Sometimes these can be good qualities (except maybe the last one)-but if its leading to my everyday BP looking like a seismogram of a bad earthquake, I may need to give my head a shake.


The clinic nurse kind of laughed when she looked at my graph and said "I know exactly when you went home from work last night".  I looked closely at the graph and the difference between my 4:15 and 4:45 readings were astounding.  In the former, my blood pressure was a jagged spike above normal.  The latter saw it plummet, straight down to the lower side of normal where it remained for the rest of the evening, going down a  bit more as I went to sleep. You can't argue with that-and it's clear I need to make some adjustments.


So moving forward I'm going to try really hard to not sweat the little things.  I am going to establish some boundaries for myself to make it clear what I should worry about and what is either not my problem, or out of my control. I'm going to take breaks and even if I eat lunch at my desk, I'm going to go for a walk afterwards. I'm going to get more exercise in general actually. I'm not going to check my Blackberry at home unless absolutely necessary and I'm not going to feel the need to answer every email I get within minutes of receiving it. I will still always be a keener, but I'm going to pull that back a bit.


Kidney donation or no kidney donation, this was a valuable chance for me to see what I'm doing to myself and make some changes. As my friend Milton has always said  "there are no prizes in the end" . No kidding.



Print-a-Kidney

March 5, 2011

My brother posted a link to the story below on  Facebook today with a note to me to perhaps think about "hanging on to my kidney".  We know science is heading this way but will it really work?  And how soon?  Is it really as simple as baking a cake? Alright I know its not that simple...but will this eliminate the need for people like me to donate their kidneys?


Food for thought.  Although...if you are reading this I either couldn't donate and am out of the program or I already have....pretty cool stuff nonetheless.
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A surgeon specializing in regenerative medicine on Thursday "printed" a real kidney using a machine that eliminates the need for donors when it comes to organ transplants. "It's like baking a cake," Anthony Atala of the Wake Forest Institute of Regenerative Medicine said as he cooked up a fresh kidney on stage at a TED Conference in the California city of Long Beach.
A surgeon specializing in regenerative medicine on Thursday "printed" a real kidney using a machine that eliminates the need for donors when it comes to organ transplants.

"It's like baking a cake," Anthony Atala of the Wake Forest Institute of Regenerative Medicine said as he cooked up a fresh kidney on stage at a  in the California city of Long Beach.
Scanners are used to take a 3-D image of a kidney that needs replacing, then a tissue sample about half the size of postage stamp is used to seed the computerized process, Atala explained.
The organ "printer" then works layer-by-layer to build a replacement kidney replicating the patient's tissue.
College student Luke Massella was among the first people to receive a printed kidney during experimental research a decade ago when he was just 10 years old.
He said he was born with Spina Bifida and his kidneys were not working.
"Now, I'm in college and basically trying to live life like a normal kid," said Massella, who was reunited with Atala at TED.
"This surgery saved my life and made me who I am today."
About 90 percent of people waiting for transplants are in need of kidneys, and the need far outweighs the supply of donated organs, according to Atala.
"There is a major health crisis today in terms of the shortage of organs," Atala said. "Medicine has done a much better job of making us live longer, and as we age our organs don't last."
(c) 2011 AFP

For another version of the story that has some different information (and a little more science) click here.

Friday, June 17, 2011

I Miss My Blog

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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March 3, 2011

I miss my blog. Plain and simple, end of story. Sure I've been "writing as I go" and just not publishing but its not the same. I don't write as often.  I'm not taking time to tell it as it happens the same way I did before.  After I was told to stop blogging, I sometimes put it off, partially because it reminded me how angry (not punch a way angry, more exhausted angry) the situation made me, and how disappointed I was in the decision that was asked of me to make. But mostly what I miss is the support I had, that is gone.

The program coordinator asked me probably a month ago if I was still able to keep in contact with people in Ontario, if I still had support despite having to end all "electronic communication". I heard myself tell her yes. But it's not the same. It really isn't. It's a sliver of a fraction of what I had before. Yes, my decision has been supported by my family, friends and extended family in Ontario, in other provinces and in the States. And if I asked any of them for help, I know they'd do what they could to deliver.With the blog though, not only could I have the "therapy" of writing about my experiences and my emotions, but I knew people were reading.  They'd give me feedback, they'd ask questions, they'd cheer me on. I could tell my Google Analytics who was reading where, when and how often they were coming back. I had friends I haven't talked to in a few years approach me to offer me words of support and encouragement which helped remind me I was on the path to something with all the tests, all the doubts.This blog allowed me to put myself out there in what for me is my best and most comfortable way of communicating-writing.

I also had the support of "strangers". I know the "stranger" factor was probably the scariest risk in the minds of people who asked me to end the blog. Someone might ask for my kidney! Someone might track me down and do bad things. I might be pressured. Valid concerns?  Maybe.  But it didn't happen, not to me at least. You know what makes the support of strangers nice? They aren't worried about me the same way my best friend, aunt or cousin is. They come at the situation with a different kind of advice and feedback (good and bad) I'd never get from people in my immediate universe. It's really about them and their experience-not me. I received a story from a mother with three children who have required transplants (one of them twice already). I heard from other donors, who like me were crazy enough to want to do this for a stranger. I heard from wonderful volunteers and employees in our local "kidney community" who saw what I could bring by generating awareness for the need to donation. I heard from a lovely lady who received a kidney last year who urged me along and helped me understand how her life had changed. I miss that momentum and I know that even though I can publish all these down the road, its not the same. The support will not be required the way it has been, people will care less as the end of the story in a lot of ways will be known and its not going to do the same in terms of educating and generating awareness. That makes me sad all around.

With this blog (when it was active) I kind of felt like those old Verizon commercials where the callers are going about their lives but they had a whole network following them, making sure everything was okay. Now I feel like that team of people have all been forced to leave.  I have a handful of people I try to keep updated via private email (illegal according to the policy but whatever...its 2011 people-get over it). It's not the same.  I think when you send an email you really think about who wants to read it, whose time you want to ask for and who NEEDS to know what you are saying (aka my mother). At least with the blog I could write it and if they had time to read it they could-I wasn't making them feel obligated. I write this a lot differently than I do my email updates as well so the process and feelings around it are so much different.

Anyway, I miss my blog and what it gave me. And that's all there is to it.

Beep Beep...Buzz Buzz

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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Today I am on the second of my 24 hour tests: 24-hour Ambulatory Blood Pressure Monitor (ABPM).

I had to show up at the clinic (at the site of the old children's hospital) at 8AM.  After filling out a few forms promising to return the machine (and not having to show my health card...I like how there is no rhyme or reason to when I have to do that), they sat me in a cubicle to watch a video. The one I've posted below is similar but not exactly the same as what I saw. It basically showed a man going through his day wearing the monitor and talked about the do's and don't of the process.

I was then brought into a room with a nurse who went over some of the key do's and don't as well as outlining which do's and don't in the video are "wrong". For example, the video mentioned to take it off for showering but she told me not to shower (and therefore don't take it off). She measured my arm to determine the cuff size I would need. They use the arm that is opposite to your writing had so in my case, the cuff is on my left arm.  The quickly determined where the pulse is most felt in the crook of my elbow and drew a black X in marker there.  There are markings on the cuff that are to line up with that X in order to get an accurate reading. To finish everything off, she took my BP at the same time as the machine to determine that the machine was functional.  I glanced at the number she wrote down-it was on the high side.  That seems to have been the case the last few times its been taken. Although I've never had what they call "white coat syndrome", I think I'm starting to develop it because of how drawn out and stressed/impatient I'm getting over this testing process, especially since everything went a bit sideways mid January with the blog etc. I think the fear of medically failing along with a lot of drama at work (unrelated to this) has me in an anxious state much of the time. Every time it beeps I know I can feel myself tense up a bit (which its going to do any minute now).

When it goes of, the machine at my hip emits two medium volume/length beep. Within a few seconds the cuff on my left arm starts to inflate and tighten on my arm, just like when they take your BP at the doctor's office.  It does seem to go a little tighter but its not overly uncomfortable. In my case the device does its routine every 30 minutes at 15 minutes before and after the hour. The beeps are not supposed to happen between 10PM and 6AM as it assumes I am asleep.  I'm pretty sure the arm squeezing with wake me up (I am a very light sleeper and this would wake anyone up).

I've made it through most of the day with only one messed up reading. It happened at lunch (which I rarely take but I had an offer of a free lunch from the boss and I had left mine in the car anyway at -25 degrees).  We were walking briskly to this little Chinese place on the edge of downtown.  I was hoping we'd get there in time for me to be sitting before the machine went off but the lights didn't work in our favour and then there was a helicopter circling overhead that we both seemed to get bedazzled by.  Just as we were walking, looking up, bumping into each other and slipping through the snow trying to figure out where the chopper came from, the machine started to squeeze. And squeeze.  And squeeze.  The nurse wasn't kidding when she said it can get a bit painful if it cant complete a reading.  Thankfully it managed to compete it a few minutes later inside the restaurant.  Although for the rest of the day it seems to have bumped the reading times by about 5-7 minutes.

It was a little awkward wearing it to work.  One meeting it actually did its think three times.  I think that was a sign the meeting was too long and I may have even said that (ha).  In reality though had I not already told several coworkers about the kidney journey, this would have been far more awkward to explain.  I'm not into lying and I don't want people thinking I'm in poor health so in a few cases today I did have to explain why I was wearing it in very brief terms as to not have my kidney thing take over the room in terms of conversation.
Although its comfortable to wear, its a bit complicated when you use the washroom.  When your pants descend, the tubing gets very short and its a more than a bit clunky trying to keep things from pulling etc.  I don't know what the solution is but it seemed to add stress to a normally not stressful activity.

I kind of wonder if this really does get rid of white coat syndrome as each time it goes off I have caught myself holding my breath and sitting in an odd position.  Even at night its going to make me "focus" on it.  I can only imagine too what some of my meetings did to the ratings this afternoon.  Probably bad timing to do this 12 days before we launch a brand new corporate website and a handful of new products. At this point while I still absolutely want to donate, these seemingly endless tests along with the vibe from the last doctor's appointment have really taken the wind out of my sails.  But this is it, this should be the last test and whatever will be will be.

CRYO what?

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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March 2, 2011
One of the tests I had to go for was to look at my cryoglobulin . We aren't always aware of what our blood tests are specifically testing for but because I initially went to the wrong kind of lab when I went to have the bloodwork done, i became more aware of the specifics of the test and what its looking for. Despite my many years of watching ER, Grey's anatomy and being a general geek when it comes to human anatomy, I had never heard of a cryoglobulin.  I couldn't even tell you if they were good or bad-until now! And because I thought what I learned was kind of cool I thought I'd share.

Cryoglobulin is an abnormal blood protein associated with several diseases. Normally testing for cryoglobulin is done when a person has symptoms of this protein or is being evaluated for one of the associated diseases.  I had slightly elevated C reactive proteins in one test and this could be the cause of it (although in my case not likely as I don't have any of the associated symptoms).  The associated diseases are things like cancers involving white blood cells, infections, autoimmune disorders, and rheumatoid arthritis.
So what does this protein do?  Well thats what I found interesting.Cryoglobulin clumps in cold temperatures-so at the microscopic level your blood gets clumpy. This causes people with cryoglobulin to have symptoms during cold weather: blanching, numbness, and pain in their fingers or toes; bleeding into the skin; and pain in joints.

How they test for this is pretty neat too.  Everything is HUGELY temperature sensitive (hence my having it done at a hospital I guess). Laboratory testing for cryoglobulin is based on the fact that cryoglobulin clumps when cooled and dissolves when warmed. The test is done on a person's serum (the yellow liquid part of blood that separates from the cells after the blood clots). The serum is kept warm from the time drawn until the cells and the serum are separated in the laboratory. Because of this, the lab folks at Foothills had to wait for th porter to arrive to transport the blood before they could start. It was first thing in the morning so they had to wait for that employee to arrive for the day.  My lab technician was actually standing in the hallway, watching for their arrival.  Once they had arrived he shouted "Cryo-I have a Cryo!!" and was met with an equally urgent toned response of readiness from the porter. They knew it needed to be handled with care.  It was also -37 outside that day and in a drafty old hospital building, even the room temperature could have impacted the test. 


Once it arrives at the appropriate testing lab, the serum then is placed at 33.8°F (1°C) for one to seven days. I'm not sure what the standard is here in Alberta but thats the norm I got off the internet. If there is clumping, cryoglobulins are present. The amount of cryoglobulins is determined by measuring the amount of clumping. They also look at the types of cryoglobulins present (there can be three) as that indicates what disease is likely at the root cause of their presence.

If you have cryoglobulin, the amount is reported back to the doctors.  A lot of it is often associated with white blood cell cancers or other white blood cell abnormalities while moderate amounts are assoicated with auto-immune disorders or rheumatoid issues. A little bit means an infection. There is often a type associated with each of these levels as well.

I think this is yet another part of medicine that is so fascinating-how did they figure this out?  What made them first look? The whole idea of something being temperature sensitive as well to that degree is really interesting. I understand the impacts can be painful, disfiguring and very unfortunate but at the very least it is identifiable-I can only imagine how it was viewed before science figured out what it was and its impacts.  It amazes me how much is understood about some parts of our anatomy and illnesses we get while others which seem simple remain so much more of a mystery to diagnose.



Thursday, June 16, 2011

Last Lab Tests-Take Two

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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February 28, 2011

I arrived at the Riverbend Calgary Lab Services this morning at 7:06AM with my bright orange jug of  fun.  I was surprised that the lab, having only being open for 6 minutes, had already issued 11 "numbers" for those who didn't have appointments or couldn't make appointments.  I took number 12 and sat down.  Not only did I like that my jug of fun (badly camouflaged by a cheap white plastic bag) had to stay with me, but that two other people arrived during my wait and also got to sit with their jugs at their feet.  I had no idea that the test would be performed at that level of frequency. Part of me wanted to make eye contact with the others ("Hey! Club Jug lady! I know what you did over YOUR weekend...how was it for you?") and it seemed as though they did too. But a larger part of all of us must have remembered what was in the jugs and that its better to just stare blankly at the floor, somewhere to the left of where our jugs sit. Awkward.

Eventually my number was called and I thankfully got to hand over my jug for good. The lab lady (who HAD to be the same one Charlie spoke so fondly of) took my two requisition forms and verified I was who I claimed and I returned to my seat to wait. She called me back a couple of times.  Once to verify who one of the requesting doctors was (because Dr N didn't seem to exist in their system).  They seemed to resolve that one on their own (more because I shrugged at where her office might be and said Foothills?").

The second trip back up to the counter was more perplexing.  One of the 6 blood tests I needed to have completed could not be done at that lab. It actually couldn't be done at any lab outside of one of the three hospitals. You also had to fast for it (which I would have been fine for as I hadn't had anything to eat or drink). So why did the Living Donor Program not know this when they said I could take the added blood tests to any lab? Its not a standard test but it is a common test if one of the initial tests comes back with a higher than normal C reactive protein result. Maybe a chart for reception/those making appointments to just double check fasting vs. non fasting, regular lab vs not regular, appointment vs. no appointment test status. It just really surprised me.

So now I have to pick a day (sooner rather than later) to make a special trip to either Rockyview or Foothills at 7AM to beat the rush, fast (as in no eating of drinking for 12 hours) and get this appointment over and done with.  Part of me is wondering if the other tests I did will have eliminated the need for this test by then or not but as that was not an option presented to me, then I will forget about that (the tests were all different but many of them are used to test for possible auto immune issues or infection and as a result I would assume the results might overlap a bit). I'm leaning towards Foothills as it means they might get the results at the Living Donor Program faster that way and there is less room for the information getting "lost" if I am getting things done in the same building. I do feel bad about being late for work again this week.  I know my employer has been great about everything but part of that I think is because its been pretty well organized and nicely spread out. My boss said "cool" when I emailed him about this second trip so I am not overly concerned except for the simple loss of time to get stuff done in this week.  Oh well.

I still have yet to hear from the blood pressure clinic who should be calling soon to set up a time for me to pick up my other 24 hour test-the blood pressure monitor. More on that to come.

There's a Strange Jug in my Fridge

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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February 27, 2011

Google can help you find
an image for everything
Today I get to pee in a jug all day. Yahoo! Actually, I get to put a contraption called a "disposable hat" into the toilet, pee in that and then I get to pour it into the jug. Once the transfer is complete, I return the jug (about the size of a bottle of liquid laundry detergent and the colour of a portable gas can) into the fridge in its plastic bag. I am not a germaphobe by any stretch of the word and I know also that urine is sterile.  But the fact that there is a bright orange jug of my "output" where the Tropicana used to be is weirding me out a bit. It's also strange to need to stop at the fridge on the way to the washroom.

I set the alarm for 5AM (which is not cool on a Sunday) so that I could start it early, making me able to finish it when I get up for work tomorrow at 5AM.   So far I've gone through the routine twice which isn't bad considering that its 11AM and I've had a cup of coffee. And at least I'm allowed to do this one on the weekend.  I'm not sure I'd be okay with doing it at work.
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It's 4:30 now. Another three (maybe?) trips under my belt almost lost one but saved it in the nick of time from tipping. We had decided to make the upstairs bathroom the designated bathroom to "wear" the hat because during a weekend day its used less.  It just means extra stairs which isn't a big deal unless I forget the jug in the fridge. Even then it isn't a big deal in the realm of things I guess.  All for the greater good right? I was just thinking to myself that even people who fail out of the tests should get something-I don't know what exactly...a thank you card? A "Thanks for Trying" postcard? Or a lollipop like when we were kids and we were "good" at the doctors. Only another five or so waking hours left in the day though so that at worst is another four to five bathroom visits.  Almost done!!

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Almost bedtime.  Hopefully (but unlikely) I will go through the night without having to get up and deal with all the hat and jug routine-mostly because it will involve going downstairs. Its hard to do that on autopilot and stay half asleep.. All and all this hasn't been too bad or as inconvenient as I thought it would be. I'm hoping that arriving at the lab right at open time tomorrow will see me move through the blood tests etc. as quickly as possible. Because of the jog factor, I couldn't make an appointment (and you can't make appointments for first thing in the morning anyway). As my past experience has demonstrated, the lack of appointment, even when impossible, seems to cause ill will at Calgary Lab Services. I'm going to a different lab this time but Charlie, who unfortunately has had more than his own fair share of lab time over the last 2 months, has informed me that this lab is not going to win any awards for friendliness either. But tomorrow is Monday.  Who doesn't start their Mondays off happy?

And Then There Were Three

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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February 25, 2011

C-reactive protein-a pretty protein
A third test has been added,  a blood test to be completed when I go and hand in my 24 hour urine test.  It turns out when Dr. N was doing her dictation after I left the appointment, she noticed that one test measured high.  I did have to ask which one (they don't normally  offer up which tests were normal, high or low) and I was told my c reactive protein., measuring my c reactive proteins, was high.  How high?  Just a bit. But enough that she wants to be sure, which I do appreciate.

Now unless you are one of the half dozen Calgary Health Authority folks who reads the blog, you might be wondering what a c-reactive protein (CRP) is, and what a high or higher than normal rating could mean. CRP is a protein made by the liver and is elevated in the blood when there is widespread inflammation somewhere in the body. It is actually a good marker (in combination with other things) to determine if people have heart disease (or the start of it).  I was told in my case thats probably not the cause because of my age and good health and the fact that I have no other symptoms of that. I was told by the program coordinator that it could be a result of a dormant infection like Lupus (???-because THAT would be better) or some other auto-immune disease. Anxious to better understand what some of the other causes are, I looked it up and this seems to be the most comprehensive list:
  • Hypertension
  • Alcohol use
  • High protein diet
  • Coffee consumption
  • Smoking
  • Aging
  • Sedentary lifestyle
  • Pregnancy or contraceptive use
  • Metabolic syndrome
  • Diabetes
  • Sleep Deprivation
  • Obesity (especially if in the abdominal area)
  • Infection
  • Burns
  • Elevated triglycerides
  • Auto-immune disease(Crohn's, Lupus, rheumatoid arthritis)
  • Gout
  • Cancer
  • Pancreatitis



You can see by the list that it can be caused by "just about anything". Quite a few of those options, while they appear to be scary, would likely not apply to me as other tests I have taken would have already ruled them out (like diabetes for example). I am not sure if "just a bit high" applies to all of these as well.  For example, if you had Cancer or Pancreatitis, would they always result in "sky high" or could they also make you register a little higher than normal?  I'm not sure.


While I didn't get the "it could be nothing" reassurance from the program coordinator, I'm hoping that it was "nothing" or something more benign like the coffee or lack of sleep (two things I am guilty of with more frequency). We shall see.  Mind you, if it comes back normal, the only way I will know that is if I get moved on through :)

Let's Get Clinical

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process. 
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February 23, 2011

Today I had my least favourite appointment to date. As you know, I was to meet with the nephrologist (we'll call her Dr. N.) and thought I would finally have the answer as to my suitability to donate. Not only do I still not have an answer to that, but I have more tests to do that rate high in the inconvenience category. To top it off, for the first time in this process I was left with the feeling that I might not be a realistic candidate because I did not perform well in the interrogation or the quick five minute physical exam.

Maybe interrogation is the wrong word. However when the first question posed to me was "What is the impetus of your decision" you can kind of tell how the conversation was going to go. Dr. N is clearly quite brilliant-it comes across in her language, how she carries herself and her obvious knowledge of human anatomy and medical conditions. However what was a bit troubling to me was her "bedside manner".  For example, she used several four and five syllable words frequently that could easily have been substituted with "regular speak". I am a smart lady with a pretty extensive vocabulary and I was finding myself having to listen carefully to what she was saying while mentally scrambling to decode some of the words (these for the most part were not even Latin-based medical or anatomical terms). It was intimidating to say the least. That, paired with her very stoic, emotionless demeanor was difficult to deal with.  Early on in the conversation I was asked to tell her all the risks I knew about the procedure.  Is this a test? I felt anxiety as I tried to remember all the risks I've repeatedly read on medical sights and personal blogs. She couldn't possible expect me to list them all.  Except I really think she did. When I stopped (or gave up) she suggested I was only focusing on the surgical and immediate risks.  I had to remind her I had given several long term risks. After pausing to think about it, she conceded that I had but it still left me feeling like I hadn't done well on a pop quiz-like I should have been more prepared. The rest of the appointment went much the same way. Several times I caught myself rambling partially because of how nervous she made me and also because she never changed her expression, never spoke to stop me and I felt like I needed to keep going until she acknowledged I had said all the right things.

Of course our favourite topic of social media came up. Have I mentioned how "over that" I am? I appreciate that as she said "she needs to hear I am okay with it".  But really?  Did she?  Because at least three others in the program have already asked that in about ten different ways on about five different occasions respectively. I do not agree with the policy but I am respecting it. I don't think its right in all regards but I am complying.  All the while holding no ill will towards to creators or enforcers of the policy. So please stop asking about it-the horse is dead and way over-beaten.

When the interrogation was done, she asked the program coordinator to leave the room so she could do an physical exam. It was quick. Dr. N's only negative comments at that point were that my legs were a bit swollen. I let her know that for a good 25 years my legs have been swollen despite my weight, time of the month, blood pressure or what moon we were in. I don't know why they swell but its never been a cause for concern with any previous doctors. I always assumed it was because of my knees and in the last few years a not great ankle.

It turns out that back in November, I was not given two tests that are now mandatory for new people entering the program. Dr N and the program coordinator hmmed and hawed in front of me a few times about it.  Truthfully it would have been better if they just gave it to me rather than giving me any hope that  wouldn't have to do them. Both are "24 hour tests" (one urine, one blood pressure) and more than anything it just extends the "waiting".  I appreciate they need to know if I am healthy enough but at the same time, I'm starting to want to get off this roller coaster.

I can't really articulate how overall this appointment made me feel except to say that for the first time I felt like I was being judged in a negative way. While I know Dr. N is there to protect me, and make sure medically I am safe to donate, I did not get the feeling that she had any interest in me as a person or had any intentions of being a "support" in this process. I don't mean that she should be there to cheer me on or hold my hand. But she didn't make me feel very good about what I am wanting to do. In fact she came off as though she were looking for reasons to declare me ineligible. It's as though she wasn't really sure she supports organ donation or though I was stupid for wanting to look into this. She didn't make me feel like she cared about anything to be honest except numbers, cells and stats. She talked about me, using medical terms, like I wasn't in the room or able to hear her. I wanted to wave my arms and say "helloooo....over here!"

Perhaps my impatience and frustration is starting to tire me out.  Maybe the fact that I've been fighting (unsuccessfully) a cold for a few days is making me more sensitive. Regardless, it just wasn't a positive experience and has left me feeling unsettled, small and kind of sad.

Wednesday, June 15, 2011

Stories

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process. 

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February 17, 2011
As I may have already mentioned, one of the most interesting parts of this journey thus far have been the number of stories people have shared with me about their own challenges with kidney disease. This so far has usually happened once I mention what I am planning to do to someone in person, or if someone else brings it up in conversation. People are eager to talk about their friends and family who have battled or are still battling kidney failure.  I should note that none of these people ever implied in the slightest that they were telling me their tales so that maybe I might divert my unassigned kidney their way. It seems they just want to help me understand as though without their stories, I might not go through with this.What was really surprising however, was how driven one family  I've never even met was to connect with me and share.

My grandma is a talker and especially likes to talk about her family. She's enormously proud of her 3 kids, her 8 grandchildren and her 2 great grandchildren and if given any window of opportunity, she's more than happy to tell you whats going on in their lives, good and bad. My very adoption into this family is a result of this quality in my grandma-she happened to mention to her family doctor back in 1975 that her daughter was still challenged in the child conception department. By fluke within days of that conversation, he learned a fellow colleague had a patient who was considering giving her soon-to-be-born baby up for adoption. He immediately thought of my grandma's story of her daughter, desperate to have a baby.  Less than 3 week later, I was home with them.

Thirty-something years later, after learning her eldest granddaughter was planning to donate a kidney to a stranger, my Granny started talking about it with an enthusiasm only a grandmother could have.  From the residents at her seniors complex, to people at church to her financial advisor, she let them know. She even told them about the "kidney website on the computer" (this blog).

I was sitting at my desk at work the other day when my phone range with a 416 area code and a name I recognized vaguely but couldn't place in the three rings I had to figure it out before it went to voice mail.  When I checked the message left by the caller later, I discovered that it was my grandma's financial planner. He wanted a call back so he, and his wife, could share their story. There was an urgency to the tone of his message and because of that and the fact that I knew my Grandma would expect me to call him back, I contacted him.

As it turns out, his wife had battled kidney problems for years and had spent time on dialysis before receiving a kidney transplant last October. His urgency in the message was nothing more than wanting me to understand how life changing this was for her, and the rest of her family. He also seemed to really need to understand why I would do something like this, which is understandable.  Being a financial planner, he also wanted me to make sure I had enough insurance-both life insurance and short term disability, ahead of the operation to be safe (note: he is not licensed in Alberta so he wasn't trying to make a sale!). He then asked if I could speak to his wife. Actually it was more like "I'm getting my wife so you can speak with her". My hatred of the phone was making this whole call feel very awkward but at the same time I felt compelled to listen to the story being presented.

His wife came on the phone with a very warm voice which made me feel at ease. She told me brief details about her kidney disease and her time on (home) dialysis. I found it interesting that she considered herself to be "lucky" that she hadn't been on dialysis that long (I think under 2 years) and was able to do it at home. This was yet another example of how positive I've found kidney patients to be-how they try to see the good in a not-so-great situation. She went on to tell me about her transplant and more importantly how different she felt from the moment she woke up.  It was amazing-like a weight had lifted.  Sure she was sore but she felt like a new person. She said the days, weeks even months after were filled with delighted moment where she would realize how she couldn't do certain things before but now they were easy.  She lamented how certain tasks were overwhelming before and now she could do them without a thought.  Her energy level different was night and day. She said she felt odd at bedtime just doing a "normal" bedtime routine of teeth brushing etc instead of being hooked up to dialysis. She said it was unreal how much of her life had revolved around her illness and treatment, how habitual and routine things were with dialysis and how wonderful it was to not have to live that way anymore. When I spoke to her, months after her transplant, she said she still gets the feeling sometimes she is forgetting to do something or should be doing things differently. It's as though she is still learning what it's like to be normal.

While I'm still sure about what I am doing, the reminder of how this donation could impact someone's day to day life in so many simple ways was humbling. Just like a good story, in our lives it's the little details that make the biggest impact on the experience.

Enjoy the little things, for one day you may look back and realize they were the big things
~Robert Brault

On Deck with the Kidney Doctor

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process. 
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February 16, 2011

Not the actual
Kidney Doctor
No sooner did I finish the last post than I got a call from the program. I'm on deck again with the Kidney Doctor (baseball reference for those of you thinking I might be on a cruise ship-I wish). The first call I received was actually from my social worker (who is really awesome by the way) to make sure I was "okay" after my chat with the doctor and the subsequent chat with her and the program coordinator.  There was a bit of the "are you still mad at us" in her voice although she didn't actually ask that. It was positioned that they appreciated they had (again) sent a lot of information to digest my way and they wanted to make sure that I had been able to process it. The funny part is that I was "over it" about 15 minutes into talking to the doctor-his acknowledgement and sincerity allowed me to let go of any doubt, concern or frustration I was still feeling. I am still perturbed by the limitations of the policy of course but I stopped having any misgivings about the program itself early in my conversation with him (although the entire conversation for an hour plus was draining).

Within moments of assuring her everything was fine, I got a second call booking me with the nephrologist next Wednesday (a quick kudos to the program coordinator for giving me the doctor's name, appointment time, location AND length of time I should expect to be there-its nice to have all the info ahead of time to know what to expect).  Despite the fact that the appointment conflicted with a marketing luncheon I really wanted to attend, I was so excited to be at this stage that I agreed to the appointment time. I mean, I can find other ways to learn about how campaign managers used social media to market/promote/propel Naheed Nenshi into the Mayor's chair last fall. Quite frankly knowing if I am a go or no go is far more important.  And that is not a reflection of my patience levels of late.  Really. Well it kind of is.

Do I think I will "pass"?  I want to say yes.  I know that my progression through all the test phases indicates I scored better than normal in most if not all of my tests. I think my only concern is the few extra pounds I have developed in the last year or so although by no means do I feel unhealthy or obese. It does worry me that they will think I am too pudgy to donate. And I could work around that right?  I am still curious about the "hmmmp" the surgeon made when he flipped through my file and glanced at my MRI.  If I get him again after this I'm going to ask him what "hmmmp" meant.

While I have never had a child, it kind of feels like Wednesday is one of those pregnancy milestones where you learn the sex of the baby or get to see the babies face via one of those semi-creepy ultrasounds that shows you exactly what your child looks like.  I guess the ultrasounds themselves aren't creepy if its your own child but when you see other peoples children, still in the womb, on Facebook...well its a little weird. But I digress...I guess to make another analogy I feel like I'm getting to open that present that's been sitting under the Christmas Tree for weeks, making you wonder what's inside.

I hope its not like the time I got the empty cell phone box for Christmas.

Patience Grasshopper...

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process. 
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February 15, 2011


Patience is a virtue. Or so they say anyway.  I've always been a fairly patient person.  Line up?  No problem.  Flight delay?  Great excuse to buy a book. Traffic?  Okay,  I might get a little antsy (I'm not a saint!) but I am still calmer that 99% of the drivers around me. As a child, I appeared even more patient than most in contrast to my severely-patience-challenged younger brother who often didn't want to wait the amount of time it took someone to complete the simplest of tasks for him.

Maybe I should have bottled some of that patience up and saved it for the future because I am really having a hard time "waiting" to see if I am approved to donate. Or even just to know when my next appointment is. Last week at the end of my pow wow at Foothills about the whole "social media" situation, I was told that the kidney doctor needed to postpone the appointment I had originally been booked for the next day. I understand the appointment being delayed but its been a few days and I haven't heard back about a re-booking yet. I would think that a calendar is a calendar and they can just look for his/her next available time no?  That particular appointment is the one that determines if I move ahead and if the surgeon appointment can be booked (which will be 1-2 weeks after that).

It's tough waiting.  People ask me what's next and I just have to shrug...I know the next step but I don't know when it is. You'd be surprised how much hinges on whether or not I am eligible.  Things like the level of volunteering I will do with a new organization I'm involved with with (Momentum-check them out as they are a pretty interesting resource in the Calgary community).  I've just started sitting on their micro business loan committee and I am interested in also doing some business development coaching.  I don't want to get involved with that though unless I know I can commit to the blocks of time required as my coaching could impact a start-up business plan's success. It's also making me wonder about the best timing for some role changes at work as well as the best time to take vacation.  I also was considering doing the Kidney March but if my surgery is not till later in the year that might not be feasible. However if its in the next 2 months (or not at all) then I could still do it and could start fundraising now!

I know, I know-when they are ready they will call and I will know when I know. I just need to be patient.  After all,  patience is the art of concealing your impatience (Guy Kawasaki).

Tuesday, June 14, 2011

The Power of Understanding, Acknowledgement & Change

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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February 10, 2011

Today I went for what I thought would be my "go-no-go" appointment with the program lead surgeon (We'll call him Dr. S)  at Foothills. Turns out that's not what the appointment was all about.  While I knew there would be some "social media" talking done as an add on to the end of the appointment, what I didn't know is that this blog was really the only reason he wanted to see me.

First off I do need to say that the good doctor was just as lovely as that one review I mentioned in a previous post portrayed him. In life, if we are lucky, we get to meet people from time to time who love what they do-they are what they do and not necessarily in that workaholic, rat race running kind of way. What I mean to say is that you could tell within moments that he believes 100% in what he does and is always wanting to excel at it, make it the best it can be. Plain and simple he wants to make people with kidney disease have better lives via transplants. He wants there to me more transplants (and no we aren't talking volume here-they need to medically, ethically make sense) because it would make more people live longer, with a better quality of life. Of course he didn't really say any of this but it was all over his face, in how (not what) he spoke and how he related things in our conversation.

He started the meeting my letting me know he had read the whole blog (I can probably attribute many of the Calgary Health Authority server hits to him!). Dr. S said in 12 years of being involved in the program, this was the first blog of its kind he's ever seen and he really liked it. He said what the blog does is so important for future donors as it will help them know what to expect, understand some of the feelings they will feel and could encourage more people to donate. Dr S encouraged me, should I donate, to consider turning my experience into a book.

Dr. S then went over his view of the social media policy and my case specifically. I really got the feeling he was explaining the policy and the risks it was attempting to mitigate, from his perceptive rather than a "corporate" one. I appreciated that. He wasn't trying to "beat a dead horse"; rather he was trying to create a dialogue about the potential good the policy can deliver while recognizing that in other ways, it might indeed be a cause of concern. He wasn't defensive or preachy-it was a really good discussion in which I felt very equal. More importantly, he was really genuine which really restored any linger doubts or reservations I had about the program as a result of how I felt I had been treated.

Towards the end of our conversation, the social worker and the program coordinator were invited into the room. Dr S had asked me to repeat some of my thoughts and feelings as to how everything had unfolded. Initially they were a little defensive although they said they weren't (their body language and tone said otherwise). I think as females there is something inherently defensive in everything we do and we don't even realize it. Its not a bad thing-its a protection thing.  We protect ourselves, our families and anything we put our heart and soul in. I would have been no different in their shoes. They were very receptive though and although I was emotionally exhausted and very hungry (given that it was part 1PM and breakfast was a distant memory), I appreciated their time spent with me and all that came out of it.

I am glad that hopefully things they learn from me and our experience together will help build a better program and ultimately help more people. I feel more confident that an administrative hiccup won't be the straw that broke the camel's back for someone else because there were moments where it came pretty close for me. I'm impressed by so many of the people who dedicate their professional lives to this program in some capacity.  Beyond their medical abilities, they have a hope, a grace and a human kindness that you don't see too often, let alone all within one group. I have often said that in life, its not about the mistakes you make but how you handle them-that measures your intelligence and success as a person. In a world where "it's not my fault" and hiding behind corporate speak and fear of liability is all too common, its good to see that real people can exist and be themselves, especially in a giant health care organization.

Medicine Gets Social

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process. 
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February 5, 2010
As you may recall, an episode of Grey's Anatomy was one of the catalysts that sent me down the path of this journey towards organ donation. Then, months later, just before I am to go back to Foothills to meet with the program in part about my "social media situation", an episode of Grey's Anatomy airs that touches on social media and medicine. In this particular episode, it was all about Twitter and tweet-teaching. It touched on many of the key debate points that have been ongoing in regards to my ability to blog while moving my way through the medical system and an "anonymous" or non directed donor program.  Sure the "discussions" in the episode probably over simplified some of the risks and benefits but I think overall it made an important statement.  Social media is everywhere, even in health care.




The episode highlights some of the key issues a lot of people (professionally and personally) are encountering with the social networks and the prolific sharing of information online. The first one is that often those in the position to make decisions on whether or not using social media in a work environment is "okay", do not have an awareness or good understanding of the different social media platforms and how they work. When something is new or unknown to us, it is human nature to default to more of a risk based way of assessing.  Is this going to hurt me?  Is this going to cause trouble for people. Could we get sued?
Another point the show brought up is that social media is one of the main ways that younger generations (in this case med students) use to access information. It's real time, it often is delivered in easy to understand short bursts of information.As I have learned from writing this blog, when you write as you go, so many smaller details are captured that would be lost in creating a larger volume of information. With social media, information can also be view virtually anywhere, anytime-it's quick and it's easy. It's also a great tool for group learning and collaboration and can extend the "community" of participates globally.  This allows people to leverage off the experiences and expertise of people they may not have ever had the opportunity to know and interact with otherwise.

But what about the risks? As this episode points out, what if something goes wrong?  What about privacy?  What if people change their mind about the fact that they waived their privacy? Absolutely there are risks. Bad things happen.  Sure, if a surgery went sideways, the whole world (or at least those following the tweets) would know. But is that such a bad thing especially if the goal of the sharing of information in the first place was to teach and learn? Is it only socially acceptable to learn from good things, situations that turn out perfectly or have a high rate of success? Now granted you wouldn't want to have social media be the CAUSE of a procedure not working (I did wonder aloud about how sanitary it was to have so many smart phones out in the O.R.) but I would think there would be steps in place to ensure that doesn't happen.

As for privacy, I will try not to get on my soap box about this one.  I will say however that we as individuals need to determine how much information we want to share with people under what circumstances.  This applies to our personal relationships, our working lives, our medical situations and everything else in between. Think it through.  What is your risk tolerance? How can sharing help or enrich your life?  What could happen by sharing information, good and bad?  What is important to you?  Listen when people present possible risks and benefits to you.  Read them, understand them, ask questions.  Then, when you are ready, make a decision (you may need to rinse and repeat this several places and times in your life). And then, guess what?  Take responsibility for your choices.  Just because other people are involved (there has to be when you share information) does not mean that you can blame them because something happened you weren't prepared for or didn't know. You can change your actions moving forward but you can't get angry, point the finger or sue the moment that things don't go exactly as you planned.

I think its pointless for me to even comment about whether or not social media has a place in medicine and health care because its already happening and its only going to happen more. I obviously do believe its an excellent tool for educating and sharing information-both scientific theory and personal experiences.  I think it has the potential to drive medical advancements at a greater rate of speed as information passes more easily between researchers.  I think, (as I have proven in my own experience of late with the blog) it's also going to keep policy makers and privacy lawyers busy trying to put guidelines in place while its already happening. I also think it has the potential to create greater, more open dialog between patients and their health care providers. There will be some ethical, legal and social bumps along the way but in time, we'll get used to it-and wonder how we ever lived without it.



The Stress Test

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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February 7, 2010

When I first started down this path of wanting to be a living kidney donor, a lot of the research and personal stories I read told me that there would be stress, worry and/or fears and there might even be a dash of anxiety for good measure. It's all "normal" and to be expected.

Except I really didn't have any stress about being a donor. None of the tests scared me (okay, the MRI didn't thrill me but it wasn't a terror thing and I was over it within a few hours).  I've been okay with watching vials of blood come out of my arm and telling my story to countless strangers in lab coats. I am comfortable with the risks of the surgery including the potential negative consequences the present and future Lauren might face. I've oddly enough even been at peace with taking the time off work (for those of you who know me well, that in itself should say something). From day one the commitment to donate a kidney to a stranger has not phased me-I am ready, willing and hopefully able. I've said it before-this has been a rewarding and interesting experience thus far and I'm very sure of myself as it pertains to this decision.

What HAS been almost overwhelmingly stressful to me is this conflict or disconnect with the Southern Alberta Transplant Program over the Canadian Blood Services "Social Media Guidelines". Everything from the way the message was delivered to when it was delivered has been upsetting, confusing and has lead to a real distrust of some people involved in the program. I'm not talking about the doctors and the technicians who have dedicated much of their working lives to making things better for people in need of transplants. I'm talking about the policy makers or even worse-the people who are not trained specifically in privacy and compliance at all who are interpreting the policies and what impact it should have on me as a patient.

On January 14th, as part of their communication of the Privacy Guidelines, it was stressed that they were not reprimanding me. But yet they went on to deliver an "or else" message to me. When was the last time as an adult you received one of those? They made me feel like a risk, a liability rather than a patient and more importantly, a potential donor. It's like I became a problem to them and not a solution for someone. It seemed like for the first week they were changing their minds on what I could and couldn't do-giving me the go ahead to talk to the media then doing a complete 180 a week later telling me essentially any communication outside of the telephone prior to surgery is prohibited (which they can't do...but whatever). How do I trust these people after that?

I've had this horrible feeling for almost a month now that their misunderstanding of privacy law and risks will lead to a decision to not let me donate. That has kept me awake at night.  Not worry about pain after surgery,  not worry about the logistics of the operation, its success but that. And to be blunt, that's crappy. I was doing a good thing and I feel like it was all for not.

I went back to them a couple of weeks ago with some questions and they have artfully delayed responding until I see the doctor this Thursday.  I guess "whatever will be, will be" but I could have done without all this.

Monday, June 13, 2011

Kidney March

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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January 29, 2011


Tonight I had the absolute privilege of being invited to the first annual "Thank You" celebration for the 2010 Kidney March. Held last fall, the march was the first of its kidney kind in Canada and was a 3 day, 100km walk through the foothills of Alberta.  The goal of the event was to raise awareness and research dollars for the Kidney Foundation and to also celebrate the community of people and their families living with kidney disease.  The inaugural march was a huge success by any definition. We were shown inspiring video showing laughter, tears, just a few blisters and people with spirits' mirrored only by the beauty of the Alberta landscape they marched through. Not only was awareness raised, they also brought in an astonishing $918 000.  Many single participants and teams of two raised well over $12 000, which to me is just mind boggling.

I felt truly honoured to have been invited to such an event. One of the local Kidney Foundation champions/employees (especially when it comes to organ donation) had thought it might be a good opportunity for me to hear some stories of people living with kidney disease.  And it was.

We heard from a man who was just about to celebrate his sixth anniversary of his transplant (courtesy of his son). Another lady (who was so full of energy it was almost a little scary) spoke of how, until she was affected by kidney disease due to an auto immune disease about 8 years ago, she believed kidney disease was something old people got. The video participants (many of whom were in the room) spoke of kidney cancer, dialysis dependencies and transplant received from mothers, sons and daughters.  I was reminded again by the lack of representation of "non directed donor" stories in the mix that I am still a rarity in Alberta-something that hopefully will change.

One thing that I really noticed (and maybe that some of the policy makers out there might want to take a look at) is that people with kidney disease and their families want to talk about it. They want people to know why they are sick, how their kidneys failed (because there are so many different reasons I guess).  They want people to know about their mothers, brothers and uncles who have been taken away by the disease too soon. For the lucky ones who have received transplants, they want to celebrate their donors. For those still waiting or not in line for a transplant, they want people to KNOW what life on dialysis is like, how changes life for their families.  People want to talk about their wait time for transplants, about the people they've lost who they've loved dearly.  They want to share their victories, their appreciation for those who have enabled them through organ donation to get their freedom and health back. What seems to make this group different  from something like the cancer community, is that first of all no one is hiding a thing and that they are a group that really bands together.  There isn't any whispering the way there is when people get "the cancer".  The Kidney Community is one where they talk about their problems and use them as inspiration to keep going.  They stick together and support one another. They share ideas, tips for living with kidney disease and most of all they really share a hope that things will get better, that with awareness will come a solution to the problem of kidney disease and failure. I think if they knew there were organizations out there trying to stop people talking about it they'd be upset. I think its possible that you can balance talking about disease, and raise awareness without making yourself a media target or really giving too much of your personal identity away.

I am seriously considering being a part of  Kidney March 2011 regardless of if I become a donor. Its not going to be easy but compared to what these people go through on a daily basis, it will be a walk in the park (albeit a very large park).