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Jonathan Power had no idea his kidneys were failing. He was in his early 20s, an avid hockey player and otherwise healthy. Though he frequently felt tired, it was nothing he couldn't chalk up to school-related stress.
After all, he was a university student in a demanding field; he had recently transferred from Engineering to a Biopharmaceutical Science program at University of Ottawa, with his sights on pursuing a career in pharmacy.
Jonathan found out he had end-stage kidney disease through a turn of events that happened, he says, "almost by accident."
What followed was a year of hospital visits, dialysis, complications and eventually a kidney transplant at Toronto General Hospital (TGH) from a living donor that saved Jonathan's life.
Jonathan and his mother, Monique Barbeau - a Radiological Technology professor at The Michener Institute of Education at UHN and now an organ donation awareness advocate - shared their story to raise awareness of organ transplants, and the importance of registering to be a donor.
A shocking diagnosis
National Organ and Tissue Donation Awareness Week
April 23 – April 29, 2017
"I was in a Shopper's Drug Mart – one of the ones with the machines to check your blood pressure," recalls Jonathan of an unremarkable fall day in 2014.
"Some friends and I were hanging out, waiting for another friend, and we were all checking our blood pressure with this machine. It said mine was really high, but I didn't really think anything of it because I had just been exercising."
Although Jonathan wasn't concerned, advice from his mother and a family history of hypertension encouraged him to keep an eye on his blood pressure. When Jonathan returned home to Richmond Hill for the winter break a few weeks later, a visit to his family doctor and a series of blood tests revealed shocking results.
"We received the phone call from the doctor's office at 8:30 in the morning, which was a little odd during the holidays," Monique recalls.
"They asked to speak to Jonathan, who was barely awake. He picks up the phone, and I'm wondering if he's even hearing what they're saying. Then I hear: 'What? Like, right now?' The conversation went on and I hear, 'Do I have time to shower?'
"They were telling us he was in renal failure," Monique says.
Jonathan was told to go immediately to the York Region Chronic Kidney Disease Clinic at Mackenzie Health, where he stayed for the next month for tests and to begin treatment.
In January 2015, Jonathan was diagnosed with focal segmental glomerulosclerosis (FSGS), a disease that causes scarring in the kidney, damages the kidney's ability to clean and filter blood, and is the leading cause of kidney failure in adults. By the time he received his diagnosis, Jonathan had only 15 per cent kidney function.
"I was asymptomatic," Jonathan remembers. "If I didn't happen to check my blood pressure, I would have eventually had complete kidney failure, and there would have been nothing we could have done at that point."
There was only one viable, long-term treatment for Jonathan: he was going to need a kidney transplant within a year. In Ontario, however, the average waitlist for kidney transplants is seven years.
Jonathan was considered to be a top-priority transplant recipient, due to both the severity and speed at which his kidneys were failing, and also to his age and otherwise good health.
"He had his whole life to live," Monique says simply.
For the next year, Jonathan underwent regular rounds of dialysis while he waited for a kidney transplant. He was able to do most of his dialysis at home, using a transportable peritoneal dialysis machine. The machine, no more than two feet in length and width, sat on a tabletop with approximately six feet of tubing connecting it to Jonathan.
"I looked like a guy walking around with a printer," Jonathan describes of the dialysis unit. "The tray where the paper would come out, that's where the bags of fluid would sit."
For nine or 10 hours overnight, a dialysis solution filtered toxins from his blood through a catheter surgically inserted into his abdominal cavity. The dialysis fluid filled his abdomen and later drained at the end of the session.
The portable machine meant that, for the most part, Jonathan was able to maintain an enjoyable quality of life. He could go out, spend time with his friends and even join his girlfriend's family at their cottage over the summer.
The dialysis, however, was not without its complications, and it was not an ideal long-term solution. Jonathan had to take time off school because the dialysis made him too exhausted to continue. As the disease progressed, the dialysis sessions increased to 12 hours a day.
At one point, the catheter tube that was inserted into Jonathan's abdomen had moved out of place and lodged itself behind Jonathan's liver, pushing fluids against his organs, causing significant pain and discomfort.
"It felt like such a long time, having to wait one year for the transplant. I can't even imagine waiting seven years," says Monique. "It is so difficult to watch your child deteriorate so rapidly and have no control over the outcome."
'Without her, he wouldn't be here'
In the end, it was a living donor who saved Jonathan's life. The donor wished to remain anonymous to everyone but Jonathan's family and her own immediate family because, as Monique says, "she didn't want the fuss."
Monique explains that from very early on, the donor just wanted to help Jonathan.
"She didn't even tell her dad until she was on her way to have the surgery," Monique says.
Almost exactly a year after receiving his diagnosis, on January 22, 2016, Jonathan received his new kidney at TGH through UHN's Kidney Transplant Program, which is the largest in Canada, performing 150 transplants each year and providing follow-up care to more than 2,000 recipients.
UHN is also home to Canada's largest living donor program; almost half of the kidney transplants performed in Canada are from living donors, which helps reduce overall transplant wait times and has the benefit of a scheduled surgery and better outcomes for organ donation recipients.
"Because she was a living donor, they are treated very special," says Monique. "They rolled out the red carpet for her at Toronto General. It was unbelievable the treatment that both of them got."
"Not that she didn't have a special place in our hearts before, but now she's got an even more special place. Without her, he wouldn't be here."
Turning to donation awareness
The surgery was a success, and within four days Jonathan was back at home.
"The recovery was really quick," Jonathan recalls. "They wanted to keep me for a week, but because thankfully I'm young and bounced back, they discharged me after a few days.
"They had a lot of other patients who were waiting for beds or waiting for transplants."
Jonathan could feel the benefits of the transplant almost immediately, and what stuck out to him was how different he felt.
"Right after the surgery I had so much energy, especially compared to how I felt before," he remembers. "I was like, this is how everyone feels all the time?"
"He's a completely different person," Monique adds. "I don't remember him having the energy he has now."
Now, Jonathan is back at school looking forward to a career in pharmacy that will allow him to give back and help patients in ways that he was helped.
Jonathan and Monique are sharing their experience as a way to raise awareness of organ donation, and to encourage more people to register to be a donor. For more details on organ donation, click here.
"You can save so many lives," Jonathan says. "You can completely transform someone's life."