Don't Boil the Ocean

Here is a guest blog post I did last year for mindyourmind.ca about my donation and volunteering. Mindyourmind is a non-profit mental health program that engages youth, emerging adults and the professionals who serve them to co-develop reliable and relevant resources. These resources are designed to reduce the stigma associated with mental illness and increase access and use of community support, both professional and peer-based. Through the use of active engagement, best practice and technology, mindyourmind inspires youth to reach out, get help and give help. It was an awesome opportunity to partner with this organization and speak to you not just about organ donation, but about the power of each of us as individuals to make changes in our communities.

Don't Boil the Ocean

I've always wanted to volunteer-I mean its good to help others right? Support a cause you believe in? The trouble was, whenever I’d decide I was going to finally do it, I didn't know where to start. There are so many people, places and organizations that need help. So many diseases need cures, there are so many environmental causes and people support volunteer roles always seemed to need more time than I thought I could offer. I kind of felt defeated before I started-how could anything I do as one person make a difference? It seemed like I was trying to boil the ocean.

So I put it off. Every couple of years I'd think about it again, start to look into organizations and where they needed help and I’d become overwhelmed all over again. I just found it hard to believe in the “power of one”.

Last summer I kept getting the feeling like something big was around the corner for me…that there was something I was supposed to be doing but just hadn't got to yet. But I couldn't figure out what that thing was. A couple of months later I was watching back seasons of Grey’s Anatomy and I saw an episode about a chain of kidney donations. One of the donors in the story was volunteering to donate to a complete stranger.

As crazy as it sounds, as soon as I saw that I realized that I wanted to do that-I wanted to donate one of my kidneys to a stranger. It somehow made sense to me and I realized that this was what I was supposed to be doing-this is what the big thing around the corner was. The more I researched, the more it made sense.

After a few months of tests and evaluations (and a few more of just waiting), I donated my left kidney to a stranger in early June. I thought I was helping one person. But I was wrong.

My donation started a chain of four transplants that wouldn't have been possible without a “non-directed” donor like me coming along. I've been told the last recipient in the chain likely had been on the waitlist for a donor for a very long time. I was a part of something that not only helped four people, but had a huge impact on their families and friends as well.

At the beginning of this journey, I started a blog about my experience mostly to help my friends and family understand my decisions. What I quickly realized was that other people across the world, interested in Living Donation were finding it and using it as a resource. On top of that, my friends and family were sharing it with people they know, raising awareness of living donation as well as kidney disease. As my coworkers found out what I was doing, we saw a direct increase in blood donations at our company blood drives (I had a few say to me “I can't donate a kidney but I thought I could at least start donating blood”). In addition, a lady in the US who I have never met has used my story to teach preteen kids at her Sunday school about paying it forward. She told them they don't have to feel helpless-there are so many things they can do to help others and that sometimes even just sharing your life experiences can inspire and help people learn something new.

I think that’s the biggest thing I've learned in all of this. Like I said, I thought I was doing something for one other person. But it’s brought me the opportunity to share my experience and what I’ve learned. Without realizing it, I've been getting people thinking about what they can do to make a difference in a way that makes sense to them (I get that not everyone wants to donate a kidney). It has helped me understand that I don’t need to boil the ocean or try to save the world-that one thing can have a ripple effect that goes further than you can ever see or know. I definitely understand now that there is power in one.

I Think I Can

Actually I know I can.

I will admit I am still a little intimidated about walking 100km with a bunch of strangers for a cause I didn't even really know existed a year ago. This afternoon, I was in my car, fretting about sharing a tent with a stranger, meeting new people and how to perfectly duct tape my feet to prevent blisters. As I drove to the kick off "Day Zero" meeting I wondered, yet again, what have I gotten myself into-what was I thinking?! Talk about distracted driving.

Then exactly halfway down to the hotel where the meeting was being held, a pretty strong inner voice spoke:

"Um hello!?!? You donated a kidney. You got through that. This is no big deal".

My friend Crystal posted a very timely quote this afternoon on Facebook. "It's not who you are that holds you back, it's who you think you're not." I am starting to realize that I am a lot more than I give myself credit for. I've accomplished a lot (not just kidney related) and I can do a whole heck of a lot more. It's taken me almost 36 years to realize this and really believe it.

So this 100km should be a piece of cake*.


*My feet do not necessarily endorse this last statement .

You Do It to Yourself, You Do...

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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Late May 2011,

I'm about a week away from the "kidney thing". I have about three to-do lists on the go-work things, home things, life things. I seem to have an uncontrollable urge to plan and execute complicated meal menus-I think its my form of nesting or stress relief but it leads to more cleaning and dishes so it's a bit counter productive. I also have somehow added extra "out of the ordinary" activities to my plate like volunteering to speak not once but twice at Momentum, a non-profit organization, about marketing and product placement tactics. And I have a big presentation due to the CFO at work-my first as the new eCommunications advisor for the bank. Oh and we got a second dog last week (two dogs under 2 years old!). And she needs to go to an hourly class once a week, starting this week, (at 8:30 PM!!) to improve her leash reactivity. Have I bitten off more than I can chew? Quite possibly.

One thing I never anticipated in all of this is how unfocused I would be in the week or so leading up to the surgery. It's not so much that I've been distracted of thoughts or worries about the surgery or its outcome. Sure there has been a little bit of that. But what I have noticed more is how unable I am to keep my mind on any particular task without jumping to another within five minutes. It's one thing to be a little side tracked for a morning but a week, especially a week you need to accomplish a lot in, is a bit much. By early on this week I was so overwhelmed it wasn't even funny.

Sometimes in life when you are in a place like this, with truly too much to do in a little bit of time, unusual things happen.  These things, in the long run, help you out, save you from yourself. In my case, it was my foot/ankle. A couple of days ago I was putting away leftovers from one of the elaborate meals I had made and took a regular step towards the fridge with a bowl of potato salad. "Sproing-pa-pop" went something, somewhere, deep in my left ankle/foot.  Sharp shooting pain ensued. "Ow" I yelped, wondering how it was possible to hurt my foot taking a simple step. Charlie looked up surprised, and quickly rescued the potato salad from my clutches, lest I drop it. "What did you do?" he asked.  I shrugged...I couldn't explain what I had done to my foot but it hurt like hell every time I put weight on it.

I stayed off of it most of the night, sure that when I arose the next morning it would be fine.  Except it wasn't.  In fact it was more tender and more swollen.By the end of that day at work, I could barely walk and it was double the size. Walking the dogs was next to impossible (with two of course skipping a daily walk is not a good idea) Charlie suggested we go to a walk-in clinic or emergency. But I didn't want to. I was terrified that it would somehow delay the upcoming kidney donation either because I'd need to take drugs I wasn't allowed to take or worse, I had done something that would make me immobile. Because getting up and walking soon after surgery is so key to better healing, I thought they wouldn't do the surgery if I wasn't in tiptop walking shape. What if it got worse and I couldn't do the surgery? I thought about how many people would be disappointed. What if I had wrecked everything simply by carrying a bowl of potato salad across the kitchen?

I somehow managed to solider through a pre-op appointment without the program coordinator noticing I couldn't really walk. I hid out at work and avoided leaving my desk for the same reason. I even attempted to walk the dogs one night to prove I was okay. I don't know why I felt like I needed to hide it from everyone but I did. It hurt a ton but I was going to try to keep that secret safe with me. I quickly realized though that in order to get through this, I had to get some rest which would mean trimming some of the items off my to do lists.The fact of the matter is, I really couldn't do some things physically. As much as it pained me to admit I couldn't I accomplish everything I wanted to on those to do lists especially some of the things I really was looking forward to like the speaking engagements, I felt a sense of relief. I was able to get the really important (for me personally) stuff done and done well. The other stuff would have to wait.

I still have no idea what happened with my foot. It seems to be getting better. Maybe it was one of those "all in your head" things that the brain does sometimes to protect you from yourself. I guess there is no way of knowing.  I still feel a bit guilty about the things I wont be getting to this week but I'm hoping that this falls into the "everything happens for a reason" category.

Fear & Dreams

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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May 26, 2011

I had another little anxiety moment while lying in bed last night about this "kidney thing". I don't know how the thought came about but all I could think of was "what was I thinking and why would I do this to myself.  Its going to hurt and its going to suck". What scared me more is the weird clarity I felt when having these thoughts, like the whole rest of this journey had been clouded somehow by optimism and goodwill.  I worried that going forward this was the only feeling I would have and that naturally it would only get worse with time. For some reason I thought the feeling would erase all the mental preparation and plans I had built up thus far.

Eventually I fell asleep but dreamed of nothing but kidneys, being late to the hospital and not having the right things at the hospital. I dreamt of trying to catch a bus to get there in time to prevent my bed from being given away. In one particular dream they were not going to let me into the operating room if I didn't have three books to read afterwards.  I was frantically trying to call Charlie and explain to him where those books might be (still in their Amazon mail wrappings, on the floor of the spare room as they are in real life). I woke up several times in the night very stressed, always having to use the washroom (which in my half awake state lead me to wonder if something was wrong with my kidneys-I mean why else would I have to urinate what seemed like every hour. I wondered if they were secretly angry with my decision).

I eventually woke up for good with my alarm at 5:01 AM. What a night-I was tired and felt like I had been running or something physical for hours. I got up, tripped over one of the Amazon books and started my day. In the shower I contemplated my initial fear and the dreams it created for me as I slept. Luckily the fear and anxiety had subsided for the most part and I was back to my cloudy optimism. Or sleepy optimism, depending on how you look at it. With a little over a week to go, let's hope that was it in the fear category.

The Dark Horse

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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May 21, 2011

It's funny how at the eleventh hour in any project or experience, something or someone comes along that surprises you. I think that is the universe's way of making you do one last shoulder check before the point of no return.  In this particular case, the dark horse that seemed to come out of nowhere was the husband of one of my closest friends.

Apparently they were watching the late evening news one recent night. I should preface this by saying that with toddler kids, the fact that they were both awake and speaking at this time of night was an event in itself. As the story goes it had been a regular evening with regular chores and family time. I was not a part of any of there conversations nor was anything related to kidney donation. The hubby, who we'll call Billy, has had actually very little to say on the subject of my kidney donation and he has known for months. Even at family gatherings or at other times when his wife brought it up as a conversation subject, he wasn't one to comment on it. Except that the other night, as they were both zoning out in front of the TV, he had something to finally say on the subject.

"Do you think we can get Lauren to change her mind?"

It's strange to have someone so close to your inner circle wait that long to voice opposition to something like this. It even came as a bit of a surprise to my friend (his wife). Billy is someone I've known a long time and I care about.  I value his outlook on things.  He's a very smart, logical guy and while I haven't agreed with every opinion he's had in the last 15ish years I've know him, I respect him greatly. So when this message made its way to me, I couldn't help but pause and think about it for a moment (or several hours actually).

Am I making a mistake? Is this a dumb idea? I was really surprised how much his opinion was causing me to doubt my decision. For some reason it was almost embarrassing to me that this was happening-like I didn't want to get caught having doubts. Was it just timing or was it because I was uncertain of my choice to donate now that it was real? What was with all this doubt? Why were these comments, out of all the ones I've received good and bad, affecting me so much? When did Billy become my voice of reason?

But I'm glad it happened. I think doubt is good when you know you’re ready for what’s next, even though you don’t know exactly how its going to go. When clarity and understanding is temporarily replaced by the shadows of doubt, the doubt can be very good at making you run through your decision one more time and review all the supporting factors (and consequences) to be sure you haven't missed anything or that the situation hasn't changed significantly. I ran through everything-from the scientific logic and statistics, to the emotional stuff. I tested myself.  I purposely read some "anti donation" web posts I found on some online forums-surgery horror stories and debates about it being unethical. I thought about the worst person in the world I could think of and then pondered how I would feel if THEY got my kidney. I went over all the what ifs, making sure I wasn't sugar coating anything too much.

While Billy's comments seemingly came out of nowhere, and I did lose a little sleep over it, in the end I think it's made me more confident in my choice to donate. I think I'm at peace now with my decision and I guess maybe I wasn't as much as I thought I was before this happened. Yet another great learning I've had along the way!

A Watched Pot Never Boils

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 15, 2011

Or does it?

Did your mom ever say that "watched pot" line to you as a kid? I heard it a few times although was always a bit skeptical about the physics behind what I thought was my mother's theory. In case you have been living under a rock, the idea behind the advice is that if you want to heat water until it boils, and you watch it while you wait, then it seems to take a very long time. Walk away and it will happen. As a teenager I learned the same logic applied to the phone, especially if I was waiting/hoping for the hunky lacrosse player at school to call.  As much as I stared at the dusty rose phone in my room (my mom made sure it matched the colour scheme), I could not use my mental powers to make it ring, and the staring seemed to have little to no impact on the phones ability to start ringing.  Go figure.

Here I am, 20 years later (yikes), staring at my office phone, wondering if its ever going to ring with a (403) 944 number with kidney news. On occasion I've picked up my iPhone and check to see if it had a message waiting for me.  Nothing. Yesterday morning I was lying in bed thinking about my week ahead and I wondered if this would be the week I found out my fate (or the fate of one of my kidneys). In the past, writing a blog post has seemed to prompt movement in the testing process when I was starting to get impatient so maybe this will work?  Ha! 

I've been tempted to call or email but I know that something is holding them up and calling isn't going to change that.  Whether Dr. N is mulling over my "nephrological suitability", someone who needs to read something in my file is away or if the lab test results are in the mail, I need to wait. It would be nice to receive a "Hey-we haven’t forgotten about you" call that let's me know where things are but I do understand they are busy. 

Being a "planner", I'm just looking ahead to the summer, vacations (Kelowna and Louisiana) and wondering (read: worrying) if I am able to proceed with donating, how it will impact plans we've already started to make. That and my mom keeps asking, every time we talk or email.  I guess I should just tell her a watched pot never boils.

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 TED Conference 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.

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.

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.

Negative Nellies

As much as I don’t want to spend much time at all focusing on the negatives of this experience, its time to talk about the “Negative Nellies”.  That way if someone finds this one day and is considering making a living donation, they haven’t been mislead into thinking that the feedback I have received is all sunshine and lollipops.

When you decide to look into donating a kidney and you start to tell people that, you have to be ready for the feedback good and bad. People love to give their opinions and many assume that you are telling them your plans because you are uncertain and in need of advice. Many assume you are asking for their approval.  While this almost always wasn’t the case for me, I still had to take a deep breath and deal with whatever reactions came my way.

When people are saying something positive, the likelihood of it “coming out the wrong way” is pretty low. But if people are concerned, emotional or down right against an idea, there is a very good chance they won’t choose their words carefully or curb their “tone”.  Here are some examples of some of the concerned, emotional and negative feedback I have received so far (keep in mind it was a big deal for me to tell some people and I was really putting myself out there when I did)

On the subject of my donation idea in general

“Isn’t donating blood enough?”

“This could be career limiting”

“That’s just a stupid idea”

“This is going to turn into some kind of Seven Pounds thing isn’t it and you are going to end up in a bathtub full of ice with a jellyfish”

“Do you think you have magic kidneys?”

“I think you just need a hobby”

On the subject of the fact I have thought it through/researched my decision

“I think you must have misread your research.  The risks of this sort of thing are very high”

“I don’t think you've really thought this through.  If you had you wouldn't be thinking about it”

“Just because someone donates an organ on Grey’s Anatomy Lauren doesn't mean you should do it.  You do understand that is a TV show right?”

On “Donating to a Stranger”:

“Who are you giving it to?...No I mean who....A stranger?  What do you mean a stranger? Why would you want to help a stranger?”

“Well that’s just selfish.  What if someone in your family needs a kidney down the road? You won’t be able to help them”

There has also been a small little group of people who aren’t negative-but they aren’t positive either.  It’s like what I told them went into a giant black hole never to be spoken of again.  These are people I interact with regularly and they don’t talk about it, ask about it and they never made a single comment when I told them about it.  They glossed over the news and in doing so have created a bit of the elephant in the room.

I know from previous life experience that life doesn't come with a manual. Our initial reactions to things are natural and we can’t always react "appropriately" to news that surprises us.  I guess what I don’t get is the aftermath-why so many of these comments are made after they've had time to digest and choose their words more carefully or why people don’t come back after they have reflected and try to “fix” any damage they may have caused.  I’m not referring to strangers here-these are people I know and consider myself to be close with.

In the end if any good can come from this relatively small ‘bad” part of what has been an overall positive experience, I would like to offer a couple of suggestions.  If someone is telling you of a major life decision they’ve made, organ donation or not, just listen.  Be honest and genuine but be sensitive.  Try to choose your words carefully and try not to leave them hanging (say SOMETHING!).You don’t have to agree with their decision but at the same time there is no good that can come out of making them feel bad about it.

And that's all the time I am going to dedicate to Negative Nellies.

“Being normal isn’t one of my strengths"






"No Doctor, this is not what my kidney
 looks like in my mind..."

  Insane people are always sure that they are fine. It is only the sane people who are willing to admit that they are crazy. ~Nora Ephron

On Saturday I get to go for the "crazy test".  At Foothills they prefer the term "Psych" but either way, we know what they are after.  I will have to rein in my "One Flew over the Cuckoo's Nest" mannerisms for 45 minutes bright and early on a Saturday morning. At least I have 3 days to practice.

In all seriousness, from what I have read the psych test is really just an interview with a psychiatrist or psychologist-I can remember which one is covered by Alberta Health. The good doctor will just be looking to see that there is no coercion, history of depression etc that could jeopardize my emotional well being should the transplant move ahead. From what I understand, they also want me to have a realistic view of the outcome.  This is important for for altruistic donations I guess because I may not find out who receives the kidney or how it turns out in the end (I might though as they are loosening up guidelines around that should all parties be willing). They probably will dig to see if any major life event like a family death or something has triggered this decision. So in reality I should be fine.
It is funny but I think that being adopted has actually been the best preparation for this psych test.  I grew up not knowing my birth relatives and had to accept that.  Then in my 20's when I was given the opportunity to reach out to them through the Ontario government, I had to be prepared for the chance that they may be a) dead or b) unwilling to provide any medical information or c)they might not want any kind of contact.  I also had to be prepared that they might want contact but that they themselves might be crazy (I see a theme here! LOL). My point is that I am not donating a kidney for any reason other than giving a kidney and hopefully helping someone who needs one.  I am OK if I never find out where it went or if it worked. I am also OK if the recipient wants some form of contact whether it be a letter or an in person meeting.  I do have to say that I'd have to draw the line at the telephone though!!. 

We're all crazy and the only difference between patients and their therapists is the therapists haven't been caught yet. ~Max Walker