The Telegraph-Journal (New Brunswick) Canada
April 24, 2012 Tuesday
Tireless crusader for organ donation; Advocacy After receiving three
organs, Saint John’s Kevin Standing says he’s simply happy to be
alive. Now he wants to increase the odds for others
by Jennifer pritchett Telegraph-Journal
SAINT JOHN – Kevin Standing is alive because two people died.
Since 1995, the 48-year-old diabetic has received a kidney, pancreas
and a liver in three organ transplants. And now, his replacement
kidney is failing and he’ll eventually need another transplant.
But despite it all, Standing is a tireless crusader to boost public
awareness about organ donation so that more people will sign up and
save a life after theirs has been taken away.
“We’re all designed to be recycled,” he says, with a laugh.
His latest challenge is to break the Guinness World Record this Friday
for the largest human awareness ribbon in support of national organ
and tissue donor awareness week, which runs April 22 through 28.
Standing and the committee he helped found, the New Brunswick Organ
&Tissue Donation Network, are hoping to create a live human ribbon
near Saint John’s waterfront with 4,000 people – one for each person
waiting for an organ transplant in Canada.
Last year alone, 195 people died before a donor could be found,
according to the Canadian Association of Transplantation.
Standing wants to change the odds for people waiting.
“Up to eight people can live from a death,” he says. “You can take the
corneas, heart, lungs, liver, pancreas and kidneys.”
Standing would like to see the provincial government make it easier
for New Brunswickers to become donors by making it possible to sign up
online, like other provinces such as Ontario and Manitoba already have
in place.
In an interview at an uptown Saint John coffee shop a few days before
the ribbon event, he’s boisterous and chatty, eager to talk about the
project. Dressed in a green-plaid flannel shirt and jeans, he sports a
salt-and-pepper beard and seemingly never stops smiling or talking. He
appears to have bounds of energy.
Standing is a man who has come close to death a handful of times and
is thrilled to be alive. He makes every minute count and it shows.
“I’m thankful to be alive, very thankful,” he says. “Words really
can’t express the gratitude I feel for that person who gave me his or
her (organ) after selflessly signing that card. I wouldn’t be around.”
Standing attributes his wife Tina and a multitude of friends with
helping him through the tough times. The couple lives in the north end
of the city with four dogs and two cats.
Kevork Peltekian, medical director for the Atlantic multi-organ
transplant program liver team, stresses the importance of organ
donation.
“The wait can take anywhere from a few months to a year … there is a
need for organ donation in Canada,” he says. “People die on the wait
list.”
The Halifax-based liver disease specialist says the donor rate in
Canada is less than 15 donors per million (population), while the rate
for some European countries is much higher, including Spain, which has
more than 40 donors per million. In Atlantic Canada, he said, it’s
between 15 and 20 donors per million.
“I think the best thing a person can do is not just sign their
donation card, but they should make it clear to their family members
and their loved ones what their wishes are,” he says.
In Atlantic Canada, 264 people are on the transplant list or at
various stages of work-up before listing. Of those, 142 are from Nova
Scotia, 61 from New Brunswick, 16 from Prince Edward Island and 45 are
from Newfoundland.
Peltekian says in order to increase the rates of organ donation, there
needs to be more awareness and discussion about it. He says that
having someone like Standing speak about it, is vital and key to
getting the message out.
“Transplant quite literally runs in his blood,” he says.
Standing’s health problems go back to his youth when he was diagnosed
with diabetes at age 12.
In the years that followed, he had trouble regulating his blood sugars
because testing methods were still somewhat rudimentary during the
1970s and 1980s. At that time, there was no blood glucose measuring
devices; blood sugars could only be tested through a urine test.
The sugar spikes eventually took their toll on his body and by the
early 1990s his kidneys were failing.
He was 31.
“I started bloating and got very tired,” he says. “My pallor changed
to a sickened yellow because of excess urea building up because your
body can’t get rid of that stuff.”
At the same time, he developed diabetic retinopathy and his vision was failing.
Legally blind but still with a little vision, Standing got on a plane
in the fall of 1994 and went to Toronto to go to St. Michael’s
Hospital. Without an appointment but armed with all the courage and
determination he could muster, he found his way to the subway and
eventually made it to the doctor’s office. He saw a specialist that
day and the doctor did emergency laser therapy, which helped save his
vision.
Within a few weeks, he was receiving treatment in Moncton to re-attach
his retina and his eyesight was saved.
Today, he has 20/30 vision.
But soon after his eyesight improved, Standing’s kidneys worsened and
he had to go on dialysis.
“My vision was coming along, but the kidney failed,” he recalls.
In 1995, his oldest brother, Arthur, came forward to say he would
donate one of his kidneys. While it was good news, Standing remembers
feeling uncomfortable accepting the kidney.
“I remember wiring his house for him afterward because I was so
grateful,” he jokes.
After the kidney transplant, Standing’s health steadily improved. He
got married a couple of years later and had gone back to work. Life
was good.
Then doctors approached him about the possibility of doing a pancreas
transplant, which would allow his body to produce insulin again and he
would no longer be a diabetic.
And so, at 3 a.m. on Jan. 3, 1999, he got the call at his home in
Saint John and headed down to Halifax, where the transplant was done
at the Queen Elizabeth II Hospital.
Standing remembers saying a little prayer to be able to see his wife again.
“This could be the last time I wake up,” he recalls thinking at the time.
The surgery went well and his body accepted the pancreas, but he ended
up spending three months in the hospital because of a serious
infection similar to flesh-eating disease that nearly killed him. He
says he lost more than 40 pounds in three weeks as a result of the
infection.
“I was rotting from the inside out,” he recalls. “You’d come in my
room and think: Who left the dead racoon in the bed? ”
After 12 surgeries that saw doctors manually remove the infection and
pus, it finally cleared.
Eventually, he was able to go home to Saint John with a new pancreas,
which allowed him to stop injecting insulin.
Standing had that pancreas for two and a half years before it stopped
producing insulin and it had to be removed. In 2002, he went back to
being a diabetic.
But as the years went on, his liver function went downhill and he
eventually learned he would have to have a third transplant. He was
suffering from nonalcoholic fatty liver disease, which describes the
accumulation of fat in the liver of people who drink little or no
alcohol.
Beginning in the summer of 2010, Standing languished at home waiting
for a new liver. Nine months later, he got a call from the transplant
committee in Halifax on Feb. 15, 2011.
Despite the snowy weather that day, his wife drove him to the Queen
Elizabeth II Hospital and he had the transplant surgery, which lasted
18 hours. He received as many as 30 pints of blood during the
operation.
“A year later, it’s doing what it’s supposed to do,” he says.
These days his problem is his failing kidney.
Still, he remains optimistic and dedicated to promoting organ donation.
His longtime family doctor Margaret MacCallum describes him as someone
who’s dedicated to advocating for other peoples’ health – even when
his own health is not doing well.
“He’s lived through a lot of this, but he still seems to have the
energy to advocate for others, which is amazing,” she says.
Standing says it’s his way of giving back.
“I’m so thankful to have had a second, third, and fourth chance,” he
says, with a beaming smile. “I’m proof that this process works. People
don’t have to die waiting.”