A driven Renaissance man, Kevin Leonard is an Information Technology researcher and innovator, a university professor, e-health scholar, public lecturer, creative & dramatic writer, and has even done standup comedy. He’s been one of those specialized accountants with the Bank of Canada. And an athlete before chronic illness erupted, in the world of NHL hockey he designed and implemented a computer coaching system that uses analysis of player and game video. (Sound familiar? When Kevin designed it, the approach was brand-new.) Is it coincidence that during Kevin’s years with the New York Rangers and the Vancouver Canucks, each team made huge leaps towards the Stanley Cup Playoffs? Now, he’s a researcher-lecturer with the University Health Network.
Yet Kevin Leonard agrees he could be the poster-child for patients who never quit. Since age 14 he’s lived with debilitating Crohn’s Disease and its multiple complications, had much of his bowel removed, and after years and too much inner scar-tissue, chose to have a colostomy. “You’ll need to speak up,” he tells people freely. “I took a longer course of antibiotics that made me lose a lot of my hearing. I’ve got hearing aids but they can’t do it all.”
None of this stuff has ever stopped him. As the figurehead and founder of Patient Destiny and a series of CAPCH-sponsored academic conferences called One Patient, One Record, Kevin is also the poster-child of ‘e-patients’ along with the likes of Dave deBronkart: patients who use email, web surfing, social media, and their own empowered sense of ‘can-do’ not only to find the health information they need, but to use both the information and the technology to proactively streamline their own healthcare.
Kevin’s whole life is about navigating problems so they don’t ruin the show.
“With my health, I’m fully aware it’s a balancing act, so I know that on any given morning I could wake up, try getting up, and not be able to do it. Being surprised by not feeling well is no surprise to me. So it’s December, Friday of the last weekend before Christmas, and I wake up, and I don’t feel like I can breathe very well. (I do have asthma, but it was only bad as a kid and then it was only exercise-induced, usually in damp and cold. It would last a couple hours and it was something I was aware of – but puffers came along and now they’re improved so much that a quick puff usually does the trick). This didn’t feel like asthma. But I took a puff anyhow. Then I took a walk to the washroom, and by the time I’d finished the walk there I was totally out of breath. Now I’m very worried. I can’t even shower. I’m just standing under the water too out of breath!
“At this point the average person is still just wondering what the heck has happened. Or if they have a history of something wrong with their respiratory system, they’re calling the doctor. But me, I’ve made it so I live in my own little test world. So I emailed my respirologist directly and told him the problem, and said, ‘I couldn’t make it to the elevator.’ I’ve had a history of pneumonia – I’ve had it many many times, I’ve worked and taught during it, when most people would be in hospital. It’s often due to being on too high a dose of something, or else that my system starts doing really well overall so I’m absorbing better then I usually absorb a medication – not 12% or 60% or whatever, but 100%. So I thought I might’ve gotten pneumonia because of the drugs I take to suppress my immune system.
“So I wrote my email and sent it, and my respirologist wrote right back saying ‘Okay, I’m sending you for 3 tests. You have a 9 a.m. appointment. Go to the hospital, you’ll have the tests already booked. You won’t see me, I’m in a board meeting, but I’ll get you to see somebody.’ So he does his ordering. I do my best to get in a cab and get to the hospital. I have a chest x-ray, blood work, and a lung function test. It’s 9 a.m. or shortly after, but these tests are not only ordered but one of his Fellows is seeing me afterwards!
“During the examination time the doctor’s asking me questions and I’m also scratching and itchy and I’m giving my wife heck for changing detergents (she hasn’t changed since the 1980’s). So he notices this and asks me to take my shirt off – and sure enough, there’s my trunk covered in a rash. He says to me, ‘You have methotrexate poisoning.’ This is a drug I’d been on, off and on, for about 14 years with no reaction. But this seems to be the history with this drug – that people on it long-term can overnight develop an allergic reaction that’s more like being poisoned. Suddenly, the body starts fighting the drug like mad! It’s taken by injection once a week, so it takes a while to be gone. If this poison reaction happens, you need somebody who knows what to do, because the drug’s half-life in your system is a full week! And the doctor says, ‘This is what you have.’
“So he gave me more prednisone, and Benadryl, and I go home. I was down to 10% of normal lung capacity. I went home and I felt better. I went to a meeting and gave a small presentation (sitting down.) There’s no way I could’ve done that if I didn’t have a world I created in which I could do what I did when I woke up and could barely breathe!
“But consider the opposite: I wake up unable to breathe. I try to call my doctor but my doctor’s out of the office. I don’t even know where other doctors are so I go to the Emergency Room, where I wait all day, without getting the right guy who can identify the rash. I would’ve been admitted to a hospital. I would’ve been there overnight, and without an idea about what’s wrong I would’ve been in most likely for two weeks, considering my other health issues. Rght through the Christmas holidays - ruining our vacation. Then? It runs out of my system if I don’t get someone who figures it out, and they say ‘Well, it’s nothing, just go home.’ Until I get my next methotrexate shot!
“I’m like the patient of the future. This system is what people NEED to have. And if it can work for a guy like me whose case is pretty complicated, then it can work for anybody.”