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Organ Donation #6
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Dare, P. (2007, Dec. 9). Life on the List; The story so far. The Ottawa Citizen. Retrieved
March 17, 2009 from E Library Database.
It's June 29, a Friday, and Jack Quinte is in the University of
Ottawa Heart Institute struggling with bad news.
A healthy heart pumps at least 55 per cent of the blood out of
its left ventricle with every heartbeat. Jack's heart is pumping
just 16 per cent.
His heart is simply not pumping as much oxygen-rich blood
as his body needs, and it's getting worse.
advocate for organ donation. But she says it's tough to ask
family members to think about others when they are so
submerged in grief in a hospital.
For Jack Quinte, the possibility of a new heart means
everything. When he arrives in Ottawa for his June visit to
the Heart Institute, he can barely make it from the taxicab to
the reception desk.
He has lost weight but Jack is still a bear of a man, 274
pounds. There aren't many hearts available for big men. The
Elliot Lake businessman has been on the waiting list for three
years and his window of opportunity for a transplant is
closing.
Looking pale in his hospital bed, he confides that he can't do
the things he did just a few years ago.
He wonders what he will tell his wife, Elaine, upon return to
his home, 650 kilometres from Ottawa.
His day at home consists of getting into his truck and driving
to the mall a couple of kilometres away, where his wife,
Elaine, has a restaurant. He has coffee with the guys for a
couple of hours, returns home for lunch, then sleeps between
1 p.m. and 3 or 4 p.m. Then he makes dinner, watches
hockey or a movie and heads off to bed.
The main reason there hasn't been a heart for Jack Quinte in
three years is because organ donation rates have remained
stagnant in Ontario, and across Canada, in recent years.
The fate of patients needing a new heart rests with families of
the small number of brain-dead patients at hospitals.
About one per cent of hospital deaths involve patients who
are brain dead. These are typically patients who have
suffered a catastrophic injury because of a car crash, a
ruptured aneurysm, a stroke or accident that causes trauma to
the head. They are completely unresponsive and the brain
shows no activity.
Their other vital organs keep going with the help of a
ventilator and intravenous medication to maintain blood
pressure. Sometimes a warming or cooling blanket is used to
keep the body at normal temperature.
If the organs are in good condition, medical teams make
plans to collect them at a designated time, co-ordinating with
several transplant teams. A single donor can often save the
lives of several patients because the heart, kidneys, liver,
pancreas and lungs can all be retrieved. Other donations, such
as cornea, eyes, skin and bones, are less time-sensitive.
In Ontario, there are around 400 brain-death cases in a year.
The big problem is that only about half of the families of
brain-dead patients consent to donation. In all of Canada last
year, there were 177 heart transplants.
It's a huge frustration for transplant patients and the medical
staff who try to save their lives.
Refusal to donate is attributed to the emotional upheaval
families face when there's a sudden fatal accident or illness,
confusion about what their religions teach about organ
donation and uncertainty about what the loved one would
want.
"It's a surreal time. It's a tragic time. You're so confused,"
says Diane Craig, whose 11-year-old daughter, Sandrine, was
killed in a 1999 school bus accident. Craig made the decision
to donate her daughter's organs and became an inspiring
"I don't cut the grass. I don't shovel the snow," he says. "I
don't clean the windows."
In the three years he's been on the waiting list Jack has felt
his life draining away. His enlarged heart has been rendered
nearly useless by cardiomyopathy, a muscle-destroying
disease.
He takes water pills so he can pee. His big bass voice, which
used to sing hymns, is barely audible. A new heart is his last
chance.
He's been close before. Two years ago, the call came from
the Heart Institute. "It was such a dramatic feeling," says
Jack.
An hour later the institute called again after discovering the
heart had an irregular beat. There would be no transplant.
He couldn't sleep properly for two days after that.
A donor heart must be not only a compatible blood type, but
also from someone of similar weight and size. Earlier this
year, Jack's cardiologist, Dr. Haissam Haddad, told him that
if he lost weight, he would increase the pool of possible
donors.
Jack lost 34 pounds in the three months leading to his June
checkup. He did it by cutting portions and carbohydrates,
eating more balanced meals and lighter foods such as salads
and soups.
As he lies in his bed at the Heart Institute in June, the 60year-old ponders the important things in his life: His wife,
Elaine, whom he married in 2001; his four grown children;
his faith in God that "helps me face each day."
He thinks about how a new heart would change his life. He
longs for the energy to do the little things. He misses those
little things. Elaine loves to dance and he wants to take her
dancing again.
The window of opportunity may be closing but he doesn't
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want that to squeeze the hope out of their lives.
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"Everything's in God's hands," he says.
point in time when you've got to lay down your sword," he
says. "You don't want to be a mental or a physical vegetable.
You allow the person a dignified death."
After a week of tests, he watches the Canada Day fireworks
with other patients from an upper floor lounge in the Heart
Institute.
He has been in the Heart Institute for three weeks and will
soon be discharged, unless a heart that fits comes in for
transplant.
Jack is discharged on July 4.
Jackie Grenon, the Heart Institute transplant co-ordinator,
notes that the availability of hearts is unpredictable. Last year
several came in during a single week and were transplanted.
This year, there hasn't been a transplant at the Heart Institute
in May or June. "I'm keeping my fingers crossed for him,"
she says.
He is deep in thought for the seven hours it takes to travel
home by bus to Elliot Lake. He wonders how he will tell his
wife the heart is getting worse and time is running out.
When Elaine meets him at the bus, she asks how the checkup
went.
Jack manages a single word: "Fine."
He will tell her eventually.
--On June 18, Lorne Maddeaux celebrates his 56th birthday in
his hospital room, with a coffee and cruller from Tim
Hortons. It's a rare sweet treat for a man who is normally
scrupulous about his diet.
The Heart Institute's doctors are worried enough that they've
elevated his case to a Status 3, the second most severely ill
condition for a heart patient. If he were any sicker, he'd be in
an intensive care unit on a ventilator.
He wonders whether surgeons will install a ventricular assist
device to help his heart pump, or do an aortic valve
transplant, as a bridge to transplant. Maybe he will go
straight to a transplant if a heart can be found. Things remain
uncertain.
In preparation for possible surgery, he takes blood-thinning
Heparin intravenously. He calls the IV pole his "dancing
partner."
Lorne's case is complicated by previous surgeries: he had a
tumour removed from his abdomen in 1981, followed by
radiation; then open-heart surgery for a quadruple bypass in
October 1992. He had a massive heart attack in 1989.
Doctors worry about scarring and adhesions from the
previous procedures and whether he will bleed profusely in
surgery.
"All I can do is take my wait-and-see pills," he says. "We've
got A, B and C, all crap shoots. That's just the reality of it."
Days pass before he is given the news that doctors won't try
to install a heart-assist device -- the bridging operation -- and
will only go straight to a transplant.
"You're all revved up, ready to go and somebody pulls the
cord out of the wall," he says from his hospital bed. "All the
energy is just drained right out of you. It's just wearing."
By June 26, Lorne has given power of attorney to his sister,
Sandra. He makes it clear to several staff at the Heart
Institute, including his cardiologist, Dr. Haddad, that he
wants there to be no extraordinary measures should his sick
heart fail.
"It's one thing to put up the good fight, but there comes a
Lorne hopes there might be a heart donated over the
upcoming American and Canadian long weekends, given the
higher number of road accidents during holidays.
Traffic accidents used to be a major source of donated organs
in Canada, accounting for 22 per cent of deceased donations
in 1999. But safety measures such as seatbelt laws, improved
highway and vehicle designs -- coupled with ever more
sophisticated emergency medicine -- have kept more
Canadians alive after accidents. By 2006, motor vehicle
accidents accounted for only 10.9 per cent of deceased organ
donors in Canada.
The decline in road fatalities is one of the reasons why the
supply of hearts remains stagnant. At the same time, the
demand for hearts -- for an aging population and the
increasing number of patients who survive heart attacks and
heart disease -- is going up.
The long weekend passes. There is no heart.
Lying in bed, Lorne's blood pressure is exceptionally low.
"The heart is weakening," he says. "There's less blood flow
and less oxygen flow. All my organs are starving for
oxygen." Lorne's kidneys are having an especially difficult
time. There's talk of installing a balloon through his groin to
assist the heart in pumping blood as an emergency procedure
if the heart starts to fail. It would buy him a week or two.
"That's what we're down to," he says.
After five weeks in hospital, he is given a two-day pass to
visit his sister in Russell. He has visions of a small, mediumrare steak.
He doesn't like hospital food: the sad-looking "garden salads"
-- just lettuce browning at the edges -- and steamed
vegetables and potatoes that "smell like compost." He eats
fresh fruit, nuts and vitamins instead. He loses 18 pounds in
June and July. The good news is it lightens the load on his
ailing heart. He's down to about 160 pounds.
But he is growing tired of the hospital and the wait for the
call.
--Sharon Quesnel, who wants a new heart so she can guide her
three nieces into adulthood, is having a bad summer.
She is down to 74 pounds and has episodes where she is left
gasping for air, unable to talk or move. She is in congestive
heart failure and is in and out of hospitals all summer.
On Aug. 21 she's in a bed at the Ottawa Hospital, hoping
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surgery will be done to get blood around a clogged carotid
artery in her neck.
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It's Valois with news about the 48-year-old donor: His heart
is damaged.
Her health is so fragile that the surgery does not proceed.
"Everything's falling apart," says the 52-year-old.
They turn the car around and head home. For the longest time
there is dead silence.
Sharon wants to be there for the three nieces she has raised:
Christine, who is turning 19; Amber, who is 20; and Sarah,
21. She is worried about Christine, who doesn't seem
interested in school.
They each start to think about what's next, given Brian's
recent decline: Long-term hospitalization. Brian thinks that's
the last call for a transplant he will get, given the rarity of his
blood type.
When she's in hospital, she worries about the girls. When
she's at home, she expends precious energy with housework.
Once home, sleep eludes them.
Money is a worry. Sharon has disability from her job as an
assistant manager with Employment and Immigration, and
Canada Pension Plan, totalling about $1,800 a month. She
has a mortgage and bills.
Her boss keeps calling to ask if she is going to quit. She can't.
She needs the benefits.
Sharon spends hundreds of dollars travelling to and from
Ottawa home to Trenton. She's been doing so for years, only
she's deteriorating quickly now and the trips have increased.
Between January and September, she makes about 30 trips
from Trenton, most of them by train.
When she was placed on the heart-transplant list more than
two years ago, Sharon figured it might be six months or a
year before she got a heart.
"Now I've pretty well given up hope."
Later, Brian tries to put it in perspective, calling it "an
excellent test" run for when a healthy heart becomes
available.
"At least there were two families that tried to help," he says.
In Ontario, during the one-year period ending in March of
2006, 402 families were approached to consider organ
donation. Only 169 became donors. Big hospitals, such as the
Ottawa Hospital and the London Health Sciences Centre,
lead the way in organ donation in Ontario, with high consent
rates translating into more donated organs.
But across the province, the consent rate for donation
actually went down in 2005-2006 to 43 per cent, from 50 per
cent the previous year.
In 2006-2007 the consent rate recovered to 54 per cent. This
improvement was likely the result of additional training for
organ donation co-ordinators in hospitals and a new approach
to families that emphasizes the values of the deceased person
and the legacy he or she could leave.
--At 1:30 a.m. on June 25, Brian Wilson, half asleep, hears his
cellphone ringing. It's Kim Valois, night co-ordinator at the
University of Ottawa Heart Institute. A heart has become
available that matches Brian's six-foot, 198-pound, B+ blood
type profile.
Brian is surprised. His blood type isn't common, though he
had a heart offered the previous July. That heart turned out to
be unsuitable for transplant. Sometimes there are blockages,
disease or defects that only become clear after special tests,
or when viewed up close by a surgeon. Cancelled transplants
are a bitter reality in the waiting game.
Valois tells Brian he doesn't have to rush into Ottawa from
his home in Warkworth, near Peterborough.
The provincial agency that runs organ donation in Ontario,
the Trillium Gift of Life Network, has also been able to
slightly increase the number of donated organs by reviewing
more cases and approaching more families. But the number
of transplants performed in Ontario only increased by three
per cent in the year ending in March of 2007.
For Brian Wilson, the cancelled transplant means a return to
his routine at Warkworth.
He leads a restricted life because, with a weakened heart, he
is susceptible to illness. Family and friends know not to come
by if they have a cold or even a sniffle. He washes his hands
all the time and is careful about social events. When his two
grandchildren visit, he can't bounce them on his knee. He
sleeps often and has little energy.
It's 1:30 a.m. and the donor's heart -- from a brain-dead
patient whose organs are functioning with the help of a
ventilator -- will only be retrieved and made available later in
the morning.
"Every six months there's a little less that you can do," he
says.
Brian and his partner, Sue Knox, pack calmly. Brian calls his
35- year-old daughter and 33-year-old son and tells them the
news, and that he loves them.
Brian and Sue are in her Mini Cooper and heading down
Highway 7 for Ottawa within the hour. They are on the road
for some time before realizing the car has almost no gas. It's
the middle of the night, but they find an open station in
Madoc.
On July 18, he is back in Ottawa for tests and a consultation
with Dr. Ross Davies, his cardiologist. One of his tests is an
echocardiogram, an ultrasound of the heart. Brian can see his
own flawed heart, with the line to the pacemaker that keeps
the weakened left side going. The left ventricle -- which
pumps blood to the rest of the body -- is enlarged. It is 6.5
centimetres. It should be 5.5 centimetres. He can see how
weak the heart muscle is, how it beats in a ragged rhythm and
doesn't pump enough blood.
Halfway to Ottawa, their cellphone rings.
In a small room, Dr. Davies sits across from Brian and looks
Even a short excursion into the garden leaves him breathless.
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over his file. Brian's blood pressure is low but the rest of his
test results are stable. He is a good candidate for transplant
because he hasn't had previous cardiac surgery and his other
organs are in good shape. Dr. Davies urges Brian to get more
mild exercise, a walk twice a day, to keep his muscles
functioning and trim a few pounds. He must steer clear of the
salt shaker.
Dr. Davies considers Brian a good candidate for transplant.
For patients with such serious heart trouble, there's a high
risk of suffering depression. It's something of which Brian is
acutely aware. He has suffered from depression in the past.
But he's doing a good job of keeping a positive attitude. This
will be crucial to successful recovery.
"He's not someone who wants to sit at home and be sick,"
says Dr. Davies. "He'd be keen to get on with life. He's tired
of being tired."
Dr. Davies reminds Brian that being on the transplant list is a
little like playing a lottery. You have no idea whether a heart
will come, but you've got to be on the list to play the game.
"It could be tomorrow. It could be in a year," says Dr.
Davies. "You just have to wait."
Dr. Davies tells Brian that if he has a major downturn, he'll
have to be hospitalized. If that happens, he might become a
Status 3 patient, which means he'd have higher priority on the
transplant list than Status 1 and Status 2 patients. He would
have a better chance of getting a heart. But it's not something
he looks forward to.
"You know the 3 is coming," says Brian. "You just hope it's a
long way away."
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