Chain Reactions: A Son’s Story of His Life-saving Donation
One kidney donation can change many lives-including your father’s.
Whatever I was about to go through, on this fall morning in 2013, at least I wasn’t in it alone. From the clammy-palm moments before the anaesthetic takes hold to the agonizing wake-up in the recovery room, from choking down watery hospital soup to marvelling at my new scar, I had an ally.
As I prepped for surgery at an Ontario hospital, my father-thousands of kilometres away in western Canada-was awaiting his turn in the operating suite the next day. Over the next 24 hours or so, many more operations would take place, all part of a synchronized chain of transplants across Canada. For confidentiality reasons, I couldn’t be told how many people were involved in the chain or where they lived, but once it was all done, my father would have the kidney he desperately needed, and I would be one shy of a pair. As for the fate of my organ, it would be flown to a hospital out west and given to someone I didn’t know and may never meet. I’m not used to this kind of intimacy with strangers.
The decision I’d made three years earlier to volunteer as a donor didn’t impact just my life and my father’s; it connected us to other people queued for operations. When I wasn’t worrying about my own predicament (rare), I spent time imagining families a lot like ours: concerned, fearful, hopeful. We’d all seen the effects of kidney disease. For my brothers, mother and me, it was a potential end to decades of uncertainty, of watching my dad deal with dropping energy levels and an array of medical problems.
I wanted to give my dad a healthier life, without harming my own. My parents also had a complex set of emotions about what I’d set out to do. ”I love my children and wouldn’t want to see any of you go through the process,” my father told me. “But I know that’s my best chance of getting a kidney.” My mother was thankful, too, though she would have gladly taken my place if she’d been a viable donor.
Unlike Mom, I had made the cut-and was waiting to be cut open. I’d mostly quelled the worries that clouded the merry-go-round of blood workups, ultrasounds, chest X-rays, urine analyses and renal scans. In 2012, we’d been part of a chain that collapsed, as some do because of tissue incompatibilities, unrelated medical issues, life changes and other factors. My dad felt disappointed. I felt guilty. Small though it was, there was an unmistakable sensation: relief. While I was committed to seeing the operation through, I wasn’t necessarily in a hurry to go under the knife. I still had so many questions-then and now.
Was becoming a living donor the right decision, or would I need that spare kidney down the road? Would my dad get back to the kind of life he wanted? How long before I could lift my toddler? Why would I volunteer for pain by climbing onto an operating table, like the blue one a nurse was now ushering me onto?
Pain. I’d shattered an elbow in a bike accident in 2006, and it was excruciating. A doctor friend said that recovering from a radical nephrectomy-a kidney removal-wouldn’t be as bad. The only sensitive zone would be the incision site on my abdomen. As he casually informed me, it would be like recovering from a stab wound. Oddly, I was reassured.
Thinking of it in stabbing terms made me feel like a tough guy-even if I did find it a bit chilly in the operating suite. I soothed my nerves with thoughts of a day spent with my dad, doing what he liked best: golfing. So what if I hated golf? A minor detail in a much bigger picture.
I never would have been able to help my father if not for the growing popularity of “daisy chain” donations, more often known as living-donor paired exchanges. A kind of organized swap meet, these chains feature donors who are incompatible with their loved ones (as I was with my dad due to our different blood types) and are instead matched with people in the same situation.
Though the idea of paired exchanges has been around since the 1980s, it was only in the late 2000s that health-care systems and hospital networks worldwide began widely instituting programs to come to the aid of hard-to-match patients. Canadian Blood Services has been facilitating exchanges with its partners in the provincial health-care systems since 2009. Paired exchanges accounted for 10 per cent of the 456 living-donor kidney transplants performed in Canada in 2011. Though some chains in the United States have included dozens of participants, examples here typically consist of eight to 10 people to keep matters manageable. More often than not, they also include an “altruistic donor,” someone who doesn’t have a specific recipient in mind but whose participation can greatly improve the odds of making a viable chain.
The Kidney Foundation of Canada estimates that 2.6 million Canadians either have kidney disease or are at risk due to conditions such as diabetes and high blood pressure. Now 66, my father had been coping with kidney problems since he was diagnosed in his early 20s with glomerulonephritis, a disease that affects the kidneys’ ability to filter blood of waste and excess fluid and salt. He’d contracted it as a result of streptococcal infections that hadn’t been properly treated while he was growing up on a farm in southern Saskatchewan.
As a kid, I didn’t really notice my dad’s health, but I do remember how his energy flagged through my teens: there were fewer family trips, more long naps. By the time he was 44-only two years older than I am now-his kidney function had declined to the point he needed dialysis. As it does for 1.5 million people worldwide (and more than 23,000 in Canada), that meant being hooked up, multiple times a week, to a machine that filters the blood-though not as efficiently as a kidney can, and with a host of side effects like hypotension and anemia. My dad was on dialysis for less than a year before undergoing a first transplant with a kidney from a deceased donor. Equal parts optimist and pragmatist, he believes he’s lucky to have been ill at a time when dialysis and transplants were becoming widespread. “Had I been of a previous generation, I wouldn’t have lived past 45,” he says. “When they had kidney failure, they died.”
His replacement kidney lasted 15 years, very good for borrowed parts. In 2007, it was back to dialysis and the waiting list for a kidney. He was stable on dialysis, but years of medication regimes and other physical strains were causing problems (his heart being just one area of concern). Could the solution be as simple as me supplying him with a fresh one?
Most of us have more renal function than we will ever need: serious health problems occur only once function falls below 25 per cent, and you require only 10 per cent to stay off
dialysis. According to Dr. Peter Nickerson-a transplant nephrologist at the University of Manitoba who serves as the medical director of organ transplantation for Canadian Blood Services-just because a patient has only one kidney doesn’t mean they’ll max out at 50 per cent. “We’ve had patients who’ve had 70 or 80 per cent on one kidney,” he says.
It would seem life with one kidney isn’t necessarily different from life with two. So when all the tests confirmed I was a prime candidate, my father and I entered the database of possible matches. My journey to the operating table had begun.
I thought I might be sad about my parting with Left Kidney-newly educated, I’d only begun to appreciate its value. Instead, when I woke up in the recovery room, my first thought was, I want more drugs. Sensing I was not the stoic sort, a nurse offered me an epidural. I’d seen its euphoric effect on my wife after 23 hours of labour; I now understand the appeal.
The recuperation process wouldn’t always feel so fantastic. The incision took time to heal, as did the abdominal wall underneath, but by the six-week mark, I was moving without discomfort. As for my dad, his doctors were thrilled: unlike his first transplant, there were no rejection episodes. I could hear the excitement in his voice every time we talked on the phone to trade post-op health details and plan get-togethers. It would just be visits to each other’s homes at first, but now that he wasn’t tethered to a dialysis machine, maybe the trips could be more ambitious, like the European holidays from my childhood. It would be somewhere with nice golf courses, but good beaches, too, so my daughter could impress her grandpa with her sandcastle-smashing skills.
Odd as it may seem, I don’t often wonder who’s walking around with my kidney. When Nickerson asks me about my experience, I tell him I’m surprised by my lack of curiosity. To me, it’s as if there’s no stranger between me and my dad-he’s the one who received my kidney. This isn’t uncommon, apparently. Nickerson says many donors feel that way because they can see the direct impact the chain had for their loved ones. In our case, it’s not just the health benefits. There’s a new closeness between my father and me, born out of shared experiences (distance be damned).
I’m only beginning to understand the importance of my role in my dad’s story and in the stories of those nameless recipients. On my end, I’m happy it didn’t take me long to fulfill a major post-surgery desire: being able to wrestle my daughter into her snowsuit. I can’t wait until she’s old enough to hear the story about how Dad got his cool scar.