THE BEAT GOES ON, ONE DAY AT A TIME
Last year, Kyle Morris received a new heart. Now he treats every day as a miracle of survival,
There is no such thing as getting up on the wrong side of the bed for Kyle Morris.
He rises every morning thankful he’s alive.
“Every single day I get up, I am so grateful,” the 19-year-old said. “It is the biggest thing in my life.”
It’s been a year since Morris received a new heart, a year in which the Sir Charles Tupper Secondary grad has had a steady heart beat and a new-found zest for life.
He scores well on post-transplant tests for organ rejection and he just went two months without a visit to the hospital. He’s down to “only 10” meds a day, a deal he gladly makes with his new heart.
It’s National Organ & Tissue Donation Awareness Week and Morris would like us all to be aware of how precious life is.
“To live, to not fear,” he said, “is the biggest thing in the world.”
Morris wrote a letter to his anonymous donor’s family, trying to express the inexpressible. How do you put those feelings into words?
“I can’t,” he said. “It’s the highest gratitude you can give to anybody ...”
At which point his voice trailed offforamoment.
Morris’s doctors have not given him an estimated lifespan for his new heart. It’s about how well he treats it, they said, about exercise, about eating well, about being healthy.
So far he’s doing well enough that recently he went to Mexico for the first time.
“My doctor said I was healthy enough. He said, ‘You go.’ I said, ‘Great!’ I do as many things as possible. You’re living, it’s like, ‘ Wow!’”
These days he hits the gym regularly, not bad for a guy who a couple of years ago got winded walking up the stairs.
Morris was 14 when his heart began beating uncontrollably during a ball-hockey game. He thought it was a panic attack.
“My heart started going bangbang-bang, like gunshots, and it wouldn’t stop. It scared the heck out of me.
“Up until that, everything had been normal. It started just like that,” he said, snapping his fingers.
After several attempts at fixing his heart surgically, tests showed Morris had Danon’s disease, a weakening of the heart. Males with Danon’s have a life expectancy of 19 years, Morris’s age now.
“When I heard I had Danon’s disease, I was kind of shocked,” he said.
“Some of the stuff that wasn’t great was I had to quit sports ... I had to slow down my life a lot. Like, I slowed down everything. The number of doctors appointments, you wouldn’t believe.”
The diagnosis meant no more hockey, no more rugby, no more judo, no more competing with his big brother, Evan. At just 16. He was supposed to feel invincible at that age.
Doctors didn’t tell him immediately he would need a transplant to live more than another two or three years. But his dad approached him one day and laid the facts on the table: He needed a new heart.
At 17, Morris was placed on a recipients list and the wait began.
“When they put me on the list, I felt really devastated. I need a new heart? Oh my God.
“In the beginning, you go through a whole lot of stuff and it’s like, wow, you get that big feeling.”
Feelings of despair, of fear, of the unknown.
“But on the other side, though, you’re like, ‘If I get this new heart, I can do anything. I can go out there and still live my life and not just be in a box.’”
The life expectancy for a boy with Danon’s was never far from his mind. “That stat was pretty crazy to me. I was about to turn 18.”
He was on numerous meds and he had a cardioverter defibrillator — a battery-powered pack wired to the heart to monitor and regulate it — implanted under his skin.
“A defibrillator in your body, right here,” he said, tapping his chest in wonder. “It’s uncomfortable, but you kind of need it.”
He got a lot crossed off his bucket list while he waited for a new heart: trips to Disneyland, Walt Disney World, Hawaii and the Philippines, where his mom’s family lives.
It was kind of like living while you’re dying, he said, but not really because at the same time you’re hoping for a new heart, a new start.
An average of 370 organ transplants a year are performed in B.C. They are done at B.C. Children’s, Vancouver General Hospital and St. Paul’s, where Morris received his new heart.
While there are 1.2 million registered organ donors in B.C., fewer than one per cent die in such a way that their organs can be donated, according to B.C. Transplant. Of last year’s 218 donors, 121 were deceased and 97 living. They contributed organs for 479 transplants. There was a waiting list of 638 recipients at the end of 2017, and 29 people died while waiting.
Transplant survival rates for recipients after five years are 53 per cent for a single lung transplant; 74 per cent for a double-lung transplant; 78 per cent for liver; 89 to the high 90s for kidney; and 81 per cent for heart recipients.
“We keep on learning, broadly speaking, how our immune system deals with a transplant. It’s not straightforward,” said Dr. Tom Blyt-Hansen, medical director of the pediatric transplant program at B.C. Children’s.
The last big breakthroughs in immune suppression drugs to battle rejection were cyclosporine and tacrolimus in the mid- to late-1990s. Since then, improvements have been incremental, Blyt-Hansen said.
“Those two drugs and that class of drugs were the first to extend survival beyond just a few years to what in many cases is now a decade or more,” he said. “There have been successive discoveries since then, newer drug classes that have slowly moved the bar ever so slightly decade on decade.
“I think the thing folks have wanted to see is that big ‘a-ha!’ — a new drug that is going to make all the difference, and that’s been harder to achieve. So when people look at the last two years versus the two years prior versus the two years prior to that, we don’t see the needle moving as quickly as many of us would like it to.”
Still, successful transplant surgery is one of the miracles of medicine, said Blyt-Hansen.
“It’s really remarkable to see and it’s why I still do this,” he said. “It’s one of my favourite parts, to see somebody perking up after their transplant.”
While there has been no new miracle drug in a generation, more work today is being done post-transplant, with greater attention paid to patients’ mental health, said Blyt-Hansen.
Anyone who has had a transplant has nearly died, he said, and psychological trauma comes with that. The old notion that people just need to suck it up isn’t acceptable, he said.
“Thankfully, we’ve moved beyond wagging our finger at people and telling them to be grateful,” Bly-Hansen said. “We need to help people learn how to live again.
“Many people come to the realization that my life is much better than before the transplant, but in many ways my life is no different, and that can be a letdown for people if you don’t prepare them.”
Kristi Coldwell was 17 when she received her new heart. That was 18 years ago.
“I was sick my whole life; low energy, low stamina,” said Coldwell, who grew up in Cranbrook with a congenital heart condition called Ebstein’s anomaly.
“When I was nine I had my first open-heart surgery.”
When she was 12, a pacemaker was inserted. She had more openheart surgeries at 15 and 16 at B.C. Children’s.
“By that time there was nothing really left for me,” Coldwell, now 35, said. “The only hope was, of course, a new heart.
“That was an incredibly difficult time. I literally didn’t know, every night when I went to sleep, if I’d wake up in the morning.”
She received her new heart, but it was infected with a virus associated with a type of lymph cancer.
“I lived and breathed the hospital and spent my days taking pills and feeling crappy from the side effects, all the while worrying I would develop cancer or reject my heart,” she said of her first couple of years following the transplant.
“The last 18 years have been amazing and I’m so grateful, but they haven’t been without a lot of struggles. I think a lot of people think that when you get a transplant, it’s a cure.
“It’s really not a cure, it’s really a disease itself. You trade one disease for another, which is why transplant research is so important.
“For me, being 18 years out now, I recognize the value of research,” said Coldwell, a senior advocacy adviser with the Transplant Research Foundation of British Columbia. “Without donors, we wouldn’t have life. But it’s really that research that gives recipients that longevity and quality of life.
“And transplant research is increasing the number of organs that are available for transplant, things like better preservation techniques for organs that previously would have been discarded. That’s huge.”
Doctors told Coldwell after her transplant that her heart might last until she was 27. So far, so good.
Both she and Kyle Morris have lost friends they’ve met through the transplant program, friends whose new hearts were rejected.
A positive sign for recipients: When Coldwell was at the stage Morris is at now, she was taking 42 drugs a day; Morris takes 10, so there’s been progress.
“My donor saved my life and gave me a second chance, but it is research that gives me hope,” Coldwell said.
“Hope that better drugs will become available, hope of a future without painful and invasive testing to monitor organ function, and hope that survival statistics won’t hang over my head.”
ORGAN-DONOR REGISTRATION
Online organ-donor registrations in B.C. spiked by more than 4,500 in the week after the bus crash that killed 16 members of the Humboldt Broncos hockey team in Saskatchewan earlier this month. The increase was inspired by the news that player Logan Boulet, who had just turned 21, was an organ donor. Six of Logan Boulet’s organs were donated to others.
B.C.’s online organ donor registry is at transplant.bc.ca. You’ll need your B.C. Personal Health Number, name, birthdate, address and, if you’re younger than 19, a parent’s or guardian’s signature.