Jamie Barber experienced a childhood that most children don’t. He was diagnosed with
lymphoma at two years old and received chemotherapy until he was six. Doctors knew
that the amount of chemo he had would damage his heart, and it did. It left him with
dilated cardiomyopathy, a disease of the heart muscle that affects the chambers by
weakening their walls.
During a vacation in Florida, Jamie remembers feeling pain in his liver, being tired, and
sleeping all day. He didn’t know what was wrong and dismissed it as fatigue. However,
when he returned home to Calgary and visited the hospital, he was told that he had
heart failure and that he would be going on a heart transplant wait list.
“I was 14 when they told me I needed a transplant. That was the first time I had heart
failure,” Jamie told HeartLife. He spent over six years on the list at 0-1 urgency. Then at
age 20, he had heart failure again during a holiday in Mexico. After this he was moved
to number 2 on the urgency scale. He laughed as he remarked: “I don’t know why it
always happened to me on vacation.”
A life-changing moment
After six months on the organ donor wait list at a new level of urgency, 21-year- old
Jamie received the answer to his prayers with a heart transplant donor. It was 2004, he
was living in Calgary at the time and travelled to Edmonton for his transplant operation.
One of the most remarkable feelings he remembers during his recovery was the pulse
sensation in his fingertips.
“The pulse in the fingertips, that was something really cool. I never realized how sick I
actually was. When I was sick with heart failure I always thought ‘oh you’re lazy’. I never
totally put it together until after the transplant when I had the energy of a normal person.
I thought ‘this is incredible, normal people have this energy all the time’.”
Within six months, Jamie was playing hockey, something he was told he couldn’t do at
14. He notes that he has to be careful and spend longer warming up because he has no
nerves going to his heart now, but he feels that it’s getting better as time goes on.
Now, 14 years after his transplant Jamie is looking forward to the future and enjoying
things in life that he never dreamt were possible, including becoming a father for the first
“It’s unbelievable, I was sick my whole life and now I’m a new person. The recovery was
probably the most incredible thing I’ve ever experienced, that and the birth of my child.
On February 26 my wife and I had our first kid.”
The importance of organ donation
As Jamie celebrates life following his heart transplant, he encourages Canadians to
register to become organ donors. He feels that the current shortage of registered
donors nationwide could be due to the fact that many people haven’t had the
opportunity to do so.
“Register to become an organ donor. I wouldn’t be alive today without mine, I wouldn’t
have a son, I wouldn’t have a wife, I wouldn’t be playing hockey. It was a whole process
that saved me; my community, friends, family, and the village It’s about helping each
other out, and that’s really what being an organ donor is. A donor’s good deed goes on
forever as they live on through someone else,” Jamie told HeartLife.
More than 1,600 Canadians are added to organ wait lists every year, according to the
Canadian Transplant Society. BC Transplant reports that there are currently over 600
patients waiting for a transplant in this region alone.
The Canadian Transplant Society states how one donor can benefit more than 75
people and save up to eight lives. “The following organs can be donated from one
individual; heart, lungs, kidneys, liver, pancreas, eyes, and skin/tissue. Kidneys are one
of the highest of all organs in demand,” said transplant recipient, Sunny Tutt, and
caregiver, Manpreet Johal, co-founders of Jivana Organ Donation Society.
National shortage of registered donors
According to Health Canada, the rates of organ donation in Canada are much lower
than other countries, including the United States. More than 4,500 people were waiting
for organ transplants in 2014 and 2,356 organs were transplanted that year. But due to
a shortage of registered donors, 278 people died while waiting for a transplant in 2014.
Although 90% of Canadians support organ and tissue donation, less than 20% have
made plans to donate, as reported by the Canadian Transplant Society.
Sunny and Manpreet of Jivana Organ Donation Society believe that there are a number
of factors which cause Canadians to refrain from registering to become organ donors.
Common issues that they see at Jivana are associated with accessibility, and that most
people are unaware of the methods used to register. When individuals see their
information booths, they rush over to explain that they intended on registering for a long
time but didn't know how. “Some refrain from registering due to personal, religious or
cultural beliefs and/or misconceptions with Organ Donation.”
Jivana is a society made up of organ transplant recipients and care takers who share
their personal experiences with organ failure, donation, and transplant, to further
educate the community. The society spreads awareness in the South Asian community
where they see very low donor registrations.
“There are many countries that require individuals to opt-out from being organ donors.
As you know, in Canada we are required to register our decisions through BC
Transplant. Organ donation and the registration process is rarely discussed in today's
society, especially in diverse communities. This can often lead to misunderstanding the
process as a whole,” Sunny and Manpreet told HeartLife.
How to register
Jivana has found that people are “amazed that it only takes seconds to register their
decision” as many are “under the impression that they have to submit their medical
history.” Jivana Organ Donation Society often has information booths set up at events in
the Vancouver area where BC residents can learn more about organ donation.
At HeartLife, we’re advocating for greater access to patient care. We support patients
and their families in times of need, many of these patients are currently on heart
transplant wait lists.