(also known as “Let’s Get this Kidney Show on the Road, Folks!”)
Flash back three years….
It was a random Thursday night in 2010 towards the end of June and I was checking my email from home. My inbox opened to an email with a photo of Laurreen, a colleague at another office that I knew casually) and her two youngest children, 2 and 5. The first time I met Laurreen, at my government job working with the homeless, I had no idea where our very casual work relationship would lead us. I have a vague recollection that she was friendly and helpful, but that all was overshadowed by the truly enormous amount of information and legislation that one needs to absorb in that first overwhelming three weeks. She then got transferred to another office, and, as casual work acquaintances often do, we lost touch. A year or so later, I found myself at her office over the Christmas period for two weeks, and would poke my nose in the door for a few minutes to say hello or ask a question.
The email alongside Laurreen’s photo was a desperate cry for help from her husband of eight years. Laurreen was dying of kidney failure. A young mother of four, with a rare blood type, at 9% kidney function, with no family members that matched, was headed for an early grave.My sense of justice was immediately outraged. Here was this kind, clever, beautiful young mother, my age, clinging to life with her fingernails. My instant, fundamental need to help kicked in, and an hour of research on being a living kidney donor gave me the essential knowledge I needed to follow up on my gut instinct reaction: the likelihood of any lasting harm to me was tiny, and the likelihood of her (and by association, her husband, children and extended family) having any kind of normal life without a donor kidney was zilch.
Kidney donor surgery itself has been around since WWII, so lots of research has been done. Pregnancy and childbirth are unaffected, your body functions completely normally with one healthy kidney, your likelihood of kidney failure is the same as a ‘normal’ person, and the surgery itself has the same basic risks that any surgery has, on par with a nosejob. Once healed, I would have the same quality of life that I had previously (although my childhood dream of being a pro wrestler would officially be kiboshed). Without a donor, she, on the other hand, would be trapped by dialysis, in the hospital four days a week for several painful hours at a time, with no vacations, no uninterrupted family time that wasn’t subconsciously aware of whether or not she was too tired to stay up to finish the board game or what the repercussions of playing tag with her two-year-old would be. And this constant maze of medical treatment and being attached to a hospital would likely end in an early death. The wait for the kidney from a deceased donor off the donor registry, given her blood type, would be approximately 8 years. That was simply NOT acceptable. I clicked on the link in Jesse’s email to find out more information and thus my journey as a kidney donor began.
My decision making process has always been swift, and occasionally has been known to makes peoples’ heads spin. As an example, I decided on a Sunday night in June that I wanted to go to grad school in the UK. By Monday I had chosen my top three schools, by Wednesday I had my reference letters, by Friday I had my applications in and two months later, I had moved to England. Eleven months later, I came home, MA in hand. The process by which I make decisions is by no means capricious – I do solid research to confirm my intuitive reaction before acting – but once made, there is no waffling on a decision. This decision was no different, and my desire to help was instantaneous.
It really came down to the very simple, very prosaic “if that were me”. And if those were my four children, if my two year old had never seen me run and if I was exhausted all the time and unable to take hold of the adventures the world has to offer, if I was facing the knowledge that I might not see my teenage daughter graduate high school, I would want someone to step up to bat for me. It wasn’t a question, more of an instinct. I couldn’t not help anymore than I could make my hair grow in curly (and let me tell you, I’ve been trying to make that happen for *years* with no success).
At my essence, I am practical, straightforward and not renowned for my patience. My answer to “when?”, regardless of the context, is always “now’s as good a time as any!” So I called my husband over to the computer and asked what he thought. One of the reasons that I married Jon is that we’re on the same moral page. While he’s also tall, dark, handsome, and very, very funny, what I truly admire is his sense of integrity and that he will always do what is right rather than what is easy. He had numerous, and valid, questions about the physical risks. While he didn’t exactly turn cartwheels at the thought of his pretty young wife going into surgery, he did understand the greater good, and the surgery itself is very safe (inasmuch as surgeries can be). So with his cautious okay, I started going through tests, one by one.
The first test is a simple blood match – which serves the purpose of ensuring you’re compatible with the recipient and has the bonus feature of weeding out the squeamish. While Laurreen’s blood type is rare, mine is O+, the multitasker of blood types (or, in hospital terms, the ‘universal donor’). This was followed up with a series of scans and tests and exams that ensured that I had the health of an Olympic athlete (minus the gold medal) in order to donate, as the health of the donor supersedes the health of the recipient at every stage. Soon, I was speaking a whole other language – one that used words like ‘laparoscopic’ and ‘creatine’. Though a language aficionado already (competitive tournament Scrabble makes me a keen collector of words), these became a part of my lexicon with a swiftness that I wish could be mimicked in my Scrabble play. The most interesting one in my mind was the tissue match, where they check to see if the recipient’s body has any negative immune response to your antibodies. This involves (in what may be my least scientific analogy ever) taking both my tissue samples and hers, collected at the same time and the same day for each of us, and putting them in a jar and shaking them up to see what happened and if anything attacked anything else. I imagined my little blood cells laying down their swords and her little blood cells laying down their shields and everyone sitting down to play Scrabble, and, in layman’s terms, that’s essentially what happened.
Meanwhile, Laurreen and I became friends, real, authentic, actual friends. We went for lunch, went to movies…low impact activities where we got used to each other and my resolve grew stronger. I admired her tenacity, that she still smiled even though sometimes it was through a fog of exhaustion, and that her dry sense of humour stayed constant even at 9% kidney function. She was getting weaker almost by the day but staving off dialysis, her two stubborn heels dug in deep, while I jumped through a series of seemingly endless health-hoops.
The day of my final tests at St Paul’s dawned, where I would get a final yay or nay. Jon and I met with the kidney specialist, the social worker, the surgeon, all of whom questioned motivation and emotional readiness and whether I had thought this through, yadda yadda yadda. (Yes, there’s a social worker. And a variety of ways where they ask you whether or not you’re being cajoled, or, my favourite, paid). Those were all fine – at this point, my decision was made, my motivation was solid, and, as I said to the surgeon upon first being introduced, “Bill, let’s get this kidney show on the road!”
They save the most invasive tests for last…one of them involved being shot up with green radioactive isotope goo with the hugest, almost Bugs-Bunny-cartoonlike needle you’ve EVER SEEN. I won’t lie and say that they were fun, nor would I choose to repeat them over, say, most other things, but they trundled along, and then Laurreen and I and our respective family members tapped our fingers and waited.
Two days later, my (unusual display of) patience was rewarded, and I got to call with the good news! Ironically, she was fast asleep when I phoned, and for a few minutes, it didn’t actually register when I told her I was a match. A very solid match. And then the shock came through in her voice, and I could almost see the tears welling up in her eyes. She went off to phone Jesse, and I went to tell my coworkers. Work was incredibly supportive the whole way along, and when I let my colleagues know, there were lots of hugs and tears and genuine joy – most of them had known Laurreen for quite a few years and had seen her health deteriorate, so there was a lot of emotional investment.
It’s interesting how viscerally people react when you tell them. There are often tears, occasionally fear, genuine gratitude, but never apathy or neutrality. It seems to be a topic that no one doesn’t have an opinion on one way or another. My best friend was not impressed – I believe her actual reaction was ‘are you out of your !@!&*@&! mind?’ – but she came around eventually.
Surgery was September 27th, 2010. We went into surgery together, each with our own surgeon. The last thing I remember was staring up at all of the masked faces surrounding me (much like being inside the ER set), the surgeon writing his initials on my hip (this apparently ensures that they take the correct kidney!), then the room started swirling and I woke up in post-op feeling like a very large truck had hit me and sped off. Surgery went well and the real sticking point was not having had any actual food in so long, which triggered a major migraine later on..the hours of throwing up and the open stomach wounds didn’t make for a good first night! That all settled down, though, and my friend Mr Morphine and I had a very intense two day fling.
Surgery was on a Monday, and I broke out of the hospital and was back home by the Thursday afternoon. The recovery time was eight weeks, which flew away in a blur of naps, movies, and short walks that gradually increased. (NB: For those of you who are American, we don’t pay any healthcare costs for surgeries, doctors visits, etc, in Canada, so this didn’t cost either of us anything. I had paid sick time for the recovery from my employer, so financially it was all moot).
So, here we are, three years later. Laurreen is on a cocktail of anti-rejection drugs daily for the rest of her life and has not returned to peak physical condition, but is walking, talking, saw her daughter graduate high school and can take her kids to hockey practice. Meanwhile, my remaining kidney (which I have named Sumo), is bigger, denser, and stronger, and I’m at the higher end of the ‘normal’ range for regular people (who have both kidneys). I have three one inch incisions where they stuck the camara inside and a three inch scar where they slid the kidney out, and those are my only physical reminders. So health-wise, I’m all good. In the meantime, I’ve had our first child, changed jobs and we’ve bought a house – lots of life changes! On Sept 27th, we’ll have our annual celebratory dinner with the four of us (Laurreen and I and husbands)… here’s to another 50 years!
So for anyone who is facing what seem to be insurmountable odds, there is occasionally a perfect dovetailing of willingness, hope and timing that can turn everything upside down in the best of ways. And for anyone who isn’t an organ donor, I urge you to sign up…little miracles can happen every day.
For more information on kidney donation: