50 KIDNEY STORIES - The Kidney Foundation of Canada

50 KIDNEY STORIES
T H E K I D N E Y FO U N DATI O N O F C A N A DA
Inspirational stories
about Canadians
coping with kidney
disease, kidney
failure, and other
kidney disorders
www.newchallengecampaign.ca
Alex Lifeson
Michael Bublé
Terry Leon
Annette Verschuren
W. Brett Wilson
vx130043_01E_JAN_Renal_Supplement_Corporate_Ad_x1a.pdf
C
M
1
2013-01-31
4:39 PM
Our purpose:
Make a difference
Y
CM
MY
CY
Over the last half-century, we have brought together a family of innovative pharmaceutical
companies all with one overarching mission: to address and solve some of the most
important unmet medical needs of our time.
CMY
K
Janssen companies are committed to supporting patients and renal programs to develop
healthcare solutions for chronic kidney disease. We work with healthcare professionals and
other stakeholders to build a portfolio of meaningful solutions that make a difference in the
lives of patients.
We are people helping people — we work closely together to harness our combined
knowledge and resources, leverage the power and promise of outstanding science, and
enhance the length and quality of life for people throughout the world.
At Janssen, we passionately pursue science for the benefit of patients everywhere.
Janssen Inc.
19 Green Belt Drive
Toronto, Ontario
M3C 1L9
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© 2013 Janssen Inc.
www.janssen.ca
EDI T OR I A L
SUSAN MCKENZIE
Silver Linings
M
y impression, ever since I was a little girl watching
my father put together his huge dialysis machine in
the 70s, was that kidney disease was two things:
really confusing and scary, but also something that had
the potential to bond people together in a powerful shared
experience – a common understanding that is too often
left unspoken.
Throughout my childhood, kidney patients and caregivers
came from near and far to support my parents and help them
cope with dialysis. There is no doubt this camaraderie and the
information they shared empowered us all. We certainly felt
less alone.
Fast forward 35 years to when I was diagnosed with kidney
disease.
While kidney disease is much more prevalent today, patients
and their families and friends often find the disease, dialysis
and transplantation more confusing than ever. Many
people are still overwhelmed; some feel like they are the
only ones to have ever gone through it.
We have to work together to change that.
Inside these pages are the inspiring stories of people
who have risen above the challenges kidney disease
or kidney failure has introduced into their lives.
Despite their challenges, or sometimes because
of them, these individuals are making meaningful
contributions and engaging in society in highly
impactful ways.
There are common threads that underlie their
stories, and I have come to believe these are the
same threads that ultimately create the shared
understanding that so meaningfully connects us all as
one kidney community.
Sharing stories with, and writing about these amazing
people, has brought me new clarity about my own
kidney journey, how it changed me in ways I didn’t fully
understand, and how I can more fully harness the power
that, as Anne Verschuren so articulately states in her
interview, “turns liability into advantage”.
I think this more acute awareness of the preciousness of life
and its possibilities is the silver lining of kidney disease.
3
Novartis Pharmaceuticals Canada Inc. is one of the country’s leading
healthcare companies committed to improving the health of Canadians.
We discover and develop medicines that make a real difference.
There can be no delay.
Patients are waiting.
www.novartis.ca
DR . JULI A N MIDG LE Y
N AT ION A L P R E S IDE N T, K IDNE Y F O U ND AT IO N
Our Hope
W
e hope you enjoy this special magazine and that you gain new
insight and knowledge while reading these inspirational stories.
We particularly hope that these remarkable and very personal
testimonials will shore you up if you are travelling along your own kidney path.
It is likely that the experiences recounted and shared will inspire you to ask
what you can do to contribute to the larger kidney community.
In 2012, we launched the New Challenge Campaign, a campaign that challenges
us to pull together as never before to imagine unlimited possibilities for kidney
patients and their loved-ones – and to take kidney disease research and prevention to the next level.
Just think how much more difficult it was for those diagnosed with kidney disease 50 years ago. Now, imagine
what a more significant investment in research, prevention, and patient services could mean to those struggling
today. What could it mean for future generations?
We all have something to contribute to the greater kidney community, according to our own unique capacity.
Please consider what you can do.
Kidney Kindness
newchallengecampaign.ca
SPECIAL THANKS
CANADA’S #1
RUST PROTECTION
COMPANY
Please join us as one of our guests
at The Kidney Kindness Breakfasts.
Edmonton and
Northern Alberta
These free events are an opportunity for you to
learn more about the impact of the services that
The Kidney Foundation of Canada, Northern
Alberta and The Territories Branch offers.
OF OUTSTANDING SERVICE
As these events are fundraisers, guests will be
requested to consider making a donation.
Please know that there is no minimum or
maximum gift required. Join us as we learn
about the many faces of kidney disease.
Please contact us and reserve your seat today.
Thank you!
DESIGN AND PRODUCTION
Jeff Funston,
Bravada Communications
PHOTOGRAPHY
Pierre Charbonneau
Bryn Gladding
Tracy Riddell
AND ALL THOSE WHO
SHARED THEIR STORIES
To Learn More:
780-451-6900 • [email protected] • www.kidney.ab.ca
5
NEVER GIVE UP,
THAT’S THE NAME OF THE GAME
E
veryone knows Don Cherry, the colourful, tell-it-like-it-is
hockey coach and media personality best known as host
of “Coach’s Corner” on Hockey Night in Canada. Perhaps
less known is that while Don coached the Boston Bruins in
the 1970s, the Cherry family was also stickhandling their way
through a major family crisis: 15 year-old Tim Cherry had been
diagnosed with kidney disease.
Don says, “Timothy was playing and I noticed his feet were
swelling. I thought it was new running shoes or getting hit by
a puck or something.”
After a quick visit to the doctor, Tim went immediately on
dialysis. Says Don, “I had no idea what dialysis even meant.
When we were there, some fella said, ‘I’ve been on dialysis for
five years,’ and I said, ‘That’s good’. We had no idea. Well we
found out awful fast. You don’t really
know anything about kidney disease or
dialysis until it hits home.”
“Dialysis was tough on Tim,” notes
Don, who admits he was scared and
frustrated he didn’t know how to help
his son. “I was a chicken, and I let Rose
[his wife] handle it.”
“One day we were driving home and
Rose said, ‘That’s it! No fifteen-yearold old boy should have to go through
this. One of us is giving a kidney’.”
Tim Cherry, today a successful hockey scout and film and
video producer, says of his experience, “That first day I
was on dialysis was one I will never forget. As I sank into
the routine of being hooked up to a dialysis machine every
other day, I started to wonder if I’d ever see light at the
end of the tunnel. No matter how strong of mind or spirit
you are, the grind of dialysis slowly starts to wear you
down. For me, it wasn’t ‘til the talk of a transplant that I
started to get back some hope. When I got the transplant,
I realized I didn’t have to go on that
machine and that’s when I first
appreciated the miracle of receiving
the gift of life.”
“No fifteen-yearold old boy should
have to go through
this. One of us is
giving a kidney.”
Sister Cindy ended up being Tim’s best match. “They were like
twins. You couldn’t tell the difference,” their dad says.
Cindy, just 21 at the time, travelled down from Kingston
where she was attending college for a family meeting in
Boston. When the nephrologist asked Cindy if she was sure
she wanted to be the donor, she responded, “Well there’s
no question”. The doctor said, “Ahh don’t say that. Brothers
and sisters have refused to do it.” Today Cindy jokes, “We
aren’t a gushy, overly-emotional kind of family, but we do
give kidneys.”
“I never realized the seriousness of it all until I saw both of
them going down the aisle for surgery,” Don says.
6
After the transplant, Don remembers watching Tim’s colour
come back. “I hadn’t seen the colour in over a year. To see
his cheeks rosy red again was incredible. We thank God
every day for it. That was almost 40 years ago and he’s
going strong.”
What stands out for Cindy is “how
quickly we rebounded. Tim and I
broke a record for getting out of the
hospital. I was out in seven days and
my brother was out in 10 days.”
Cindy points out that the surgery
was more difficult back then. “In
those days they took a rib out, so I
wasn’t a hero getting out of bed too quick. It was all worth it,
100 percent.”
Cindy and Don agree that more awareness, especially
around organ donation and transplantation, is the key to
making life easier for many kidney patients.
“When I think of Tim and how desperate we were driving
back and forth in Boston, and we thought it was the end of
the world, and our lives were over – like I said before. The
Lord was good,” says Don Cherry.
Always in the kidney patient’s corner, Don says, “Never give
up. Try not to despair, keep plugging along. Never give up –
that’s the name of the game.”
DON AND CINDY CHERRY
Dominion Lending
Centres, Canada’s
largest and fastest
growing National
Mortgage Brokerage, wishes to congratulate
The Kidney Foundation of Canada on their
50th Anniversary. Keep up the great work.
7
A LE X
LIFESON
“Finding a
cure for kidney
failure is the
only real
answer.”
8
Where Hope Resides
B
y his own admission, Alex Lifeson is a pretty resilient,
easy-going guy. The world-renowned guitarist who
co-founded the iconic rock band Rush at age 15
believes these are traits he inherited from his father Nenad.
His father’s strong work ethic and irrepressible spirit carried
him successfully throughout his life, including a courageous
journey to Canada from Yugoslavia in 1947 and a number of
health challenges, culminating in a final battle with kidney
failure from 2000 to 2003.
“My father was someone who was able to adapt to constant
change all his life,” Alex says, “and if he ever did complain, he
always made a joke out of it. I remember being with my dad
at the hospital when the doctor told him there was nothing
more they could do for him and that he should live the last
years of his life the best he could on dialysis. I remember like
it was yesterday, my dad sitting up in bed, saying, ‘but I feel
like I am 24’.”
Alex recalls that, despite the initial shock, his father
handled the transition to in-centre hemodialysis three
times a week with his usual positive attitude and
great sense of humour. But it was clear dialysis was
hard on him. And life for the family, especially his
mom and dad, became much more restrictive. The
complex arrangements involved with traveling
while on dialysis meant his parents now had to
pass on the family trips to Florida they had all
enjoyed so much.
Because of the underlying health conditions –
heart disease and blocked arteries – which led
to his kidney failure, Alex’s father was not a
candidate for a transplant.
Now, as one of The Kidney Foundation’s
national spokespeople in a new campaign to
raise public awareness of kidney disease,
Alex is doing everything he can to help get
the message out to Canadians that the best possible way to
fight kidney failure is to stop it from happening in the first
place – by understanding and managing the risk factors and
underlying health conditions, like diabetes and high blood
pressure, that often lead to it.
“Once your kidney function is gone, it’s gone. It’s never
coming back and you can’t turn back the clock. Very often
you can successfully tackle the conditions that lead to
kidney failure with lifestyle changes or medication.”
Now 60 years young and still touring the world to sellout
crowds, Alex practices what he preaches and pays close
attention to his health. He’s well aware that in addition
to his dad’s strength of character, he’s also inherited a
predisposition to the same health conditions, including
kidney stones, which increase the risk of developing chronic
kidney disease.
Though a proactive approach to kidney health is crucial, not
all kidney disease is preventable, and Alex is unequivocal in
his belief that, “finding a cure for kidney failure is the only
real answer”.
For Alex, “getting to the cure means raising enough
money to be able to keep searching for better and more
effective treatments.” He has helped advance The Kidney
Foundation’s research efforts by participating annually
in the Foundation’s “Brush of Hope” art sale since 2006.
Proceeds from the sales of his original paintings and signed
limited edition prints have raised over $140,000 to support
kidney research in the last three years alone.
“So much is yet undiscovered and science is moving so
rapidly. Think of the potential of stem cell therapy alone. It is
the continued quest for new and better diagnostic methods
and treatments that will ultimately lead to a cure – that’s
where hope resides.”
9
TURNING LIABILITY
INTO ADVANTAGE
B
est known for her 15-year stretch as President and
CEO of Home Depot, Annette Verschuren was just 15
when a blow to her back during a basketball game
sent her to the hospital. Eight days later, Annette endured
her first gruelling set of kidney operations at St. Elizabeth’s
Hospital in North Sydney, Nova Scotia to treat hydronephrotic
kidney disease, a condition where the kidney swells and has
difficulty draining urine into the bladder.
Annette underwent another set of serious kidney operations
in 1976-1977. She was told she would be on dialysis by the
age of 25 or 27. But, by sheer will, and perhaps a bit of luck,
Annette would overcome the odds.
“Those years were very difficult. It was a tough, tough time,”
she says. “I didn’t understand what was happening or why.
For a few years, I felt like a victim, I felt sorry for myself.”
Annette says the things that got her through it were family,
excellent health care, and most importantly, her attitude.
Her father had had a serious heart attack at 42 after which
she and her four siblings kept the family dairy farm going.
“One particular evening after one of my surgeries, my dad
said, ‘Annette you helped me when I was sick, but I can’t
help you now that you’re sick.’ Everyone within earshot was
crying. It was the most emotional day in my life. He thought
he couldn’t help. But there he was. My mom and dad were
always there for me.”
Annette believes our exceptional Canadian health care
system is one of the reasons she came out on top. “My
parents were poor and they could never have afforded the
operations I needed. Canada decided it was important to
take care of me and I think the return on investment hasn’t
been that bad.”
As strong as our health care is, Annette is surprised there
is still such a general lack of awareness about kidney
diseases, and such a long wait for a kidney transplant.
“Waiting four years for a kidney is unacceptable,” she says.
As I dealt with my condition over the years, antibiotics got
better, treatment options, including transplant, got more
10
successful. That’s progress, but it’s not enough. At the
end of the day, what we need is more awareness about
the devastation kidney diseases cause, and a system
that makes decisions – and provides access to improved
dialysis and transplant – in faster, more efficient ways.”
Above all, Annette says her attitude made the single
biggest difference in helping her survive – and thrive.
“When you are that sick for that long, you really think
about what your choices are in life. Every time I woke up
in the recovery room, I was so glad to be alive and I have
such a great appreciation for every day.
“I thought of my illness as a liability until I realized I
could get the mental advantage. At that point, the liability
became the advantage. My strength is that when I have a
bad day I go back to when I woke up in the hospital – now
that was a bad day.”
Today, Annette continues to exemplify the can-do attitude
she embraced so early in her life and remains a force in
the business world. She has taken on the role of Chair
and CEO of NRStor, a company she hopes will become
the industry leader in the commercialization of energy
storage technologies.
Her professional accomplishments are perhaps only
outshone by her ability to so successfully manage her
kidney disease. With the help of her homeopath, a good
nephrologist, a personal trainer, and a learned ability to
understand and respond to her own body, Annette has
avoided dialysis and no longer takes the antibiotics she was
dependent on for 30 years. “I am one of those rare people
whose kidneys have actually started to heal,” she says.
Annette wants kidney patients to know, “If you adopt the
right mindset, your disease can be your advantage as it
has been mine. There is great progress happening. Focus
on that and think about that transplant you are going to
have, or that treatment improvement coming that is going
to make your life easier.”
A NNE T TE
V ER SCHUREN
Chair & CEO, NR Stor
“ I have a perspective
that comes from my
kidney experience
that is such an
advantage.”
11
brave
is trusting others to do the right thing.
We are pleased to celebrate the 50th anniversary of
the Kidney Foundation of Canada and of our support
in the pursuit of its mission.
Shire Canada Inc. is a biopharmaceutical company with Canadian
headquarters located in Montreal. We are a proud member of the
Rx&D association and take pride in contributing to the vitality of the
pharmaceutical industry in Quebec and elsewhere in the country.
To find out more about the Shire Chair in Nephrology Transplantation
and Renal Regeneration at Université de Montréal, please visit
www.chaireshire.com.
Shire Canada Inc.
2250, boul. Alfred-Nobel
suite 500
Saint-Laurent (Québec) H4S 2C9
514 787-2300
www.shirecanada.com
To be as brave as the people we help.
Dancing
to Life
HILDA GREGORY
“Have something
to live for and
dance toward it.”
E
ducated at the University of Manchester in England,
Hilda Gregory has received the Order of Canada and
the Order of BC for her dedicated work as Founder and
Principal of Vancouver’s Oral Centre for Deaf Children (now
Children’s Hearing and Speech Centre). The curriculum and
methodologies she developed are used at other schools in
North America.
Her determination to make a difference with her life is inspiring.
This is especially true when you consider that nothing – not
even kidney failure, could knock her off course.
back to work full-time within three months.
Having always had an open-door policy with her staff, Hilda
continued this tradition. But now, if someone popped in over
the lunch hour, she would be on dialysis. “People became
accustomed to my routine and began to feel at ease. They
would say, ‘Hilda we’re so surprised at you doing this in public
because you’re such a private person.’ It’s amazing what you
can do when you have to.”
Hilda remembers well the Thanksgiving weekend in 1997
when she collapsed alone in her apartment. Luckily, the
daughter of her landlady found her and called 911. Hilda
was put immediately on hemodialysis. “I’m fortunate to be
sitting here telling the tale,” she says.
Hilda received a transplant in 2001 that lasted until 2006,
after which she resumed PD. She has been on this latter
treatment ever since – 16 years in total. Having retired in
1999, she continues to lead a full and rewarding life which
includes providing regular peer support to other kidney
patients, both individually and in group sessions.
Once stabilized, she switched to peritoneal dialysis (PD)
because she thought it was the best option to get her back
to work and living her life. “I didn’t ask ‘why me?’ because
I thought ‘why not me?’ Just tell me what I have to do, so
I can resume my life. I had things I needed to do.” She was
Ever the teacher, Hilda approaches kidney disease as she
has everything else in her life, in part by asking, “What am I
to learn from this?” She notes, “There’s a quote from Ruben
Alves, a Brazilian theologian, that governs my life: Hope is to
hear the melody of the future. Faith is to dance it.”
13
G A É TA N F R I G O N & H É L È N E H É R O U X
“Donating a kidney
to a loved one is really
a gift of life.”
U
p to a few years ago, renal failure did not figure in Gaétan
Frigon’s universe. The prominent businessman and one
of the stars of Dans l’oeil du Dragon – the French version
of the television program Dragons’ Den – remembers that at
age 45 he was “turned down for life insurance”. A high creatinine
level was the reason cited for the refusal, yet he felt perfectly
healthy and wasn’t experiencing any negative symptoms.
About twelve years later, during an annual check-up, his
family doctor mentioned that his creatinine level seemed to
be creeping upwards every year and that this could indicate
kidney damage. He referred Mr. Frigon to a nephrologist who
provided a diet and nutrition plan to slow the progression of
kidney disease.
While symptoms remained silent, Gaétan’s creatinine level
continued to crawl upward. One day, his nephrologist warned
that when the level would hit 300, he’d have to start dialysis
treatment and go onto a transplant waiting list. “Now wait a
minute,” Gaétan remembers thinking, “this is more serious
than I thought.”
Gaétan didn’t consider the option of a living kidney donor
until the day his sister, Pierrette offered him one of her
kidneys. “It hit me then,” he remarks, “and I really didn’t
Astellas Pharma Canada, Inc. is a Canadian affiliate of Tokyo-based Astellas Pharma Inc.
Astellas is a pharmaceutical company dedicated to improving the health of people around the
world through the provision of innovative and reliable pharmaceutical products.
The organization is committed to becoming a global category leader in focused areas by
combining outstanding R&D and marketing capabilities.
In Canada, Astellas has an intense commercial focus on five therapeutic areas - Urology,
Immunology, Infectious Disease, Dermatology and
Oncology. Visit: www.astellas.ca
14
know how to react. It’s really important that doctors talk
about this option.”
When, for medical reasons, his sister had to withdraw
her offer, both his daughter and his life partner, Hélène
Héroux, decided to undergo compatibility testing without
discussing their decision with him. While both women proved
compatible, Hélène insisted she should be the donor. “It
was not easy to accept her offer,” notes Gaétan, “because
one can’t help but think of the risks. But Hélène said to
me, ‘Listen, I’ve really thought about it and I think the risk
is minimal. I really don’t want to discuss this further – I’ve
made my decision!’”
Gaétan says that of all the surgeries he’s had, his kidney
transplant was the least painful one. “I felt great immediately,”
he underscores, “and so did Hélène. My first medical
follow-up was six days later. Everyone in the waiting room
– all transplant recipients – didn’t believe that I’d had my
transplant just the week before. But I think the fact that
mine was from a living organ donor, made all the difference. I
consider myself extremely fortunate not to have gone through
the negative side of renal insufficiency. Donating a kidney to
a loved one is really a gift of life, a gift that adds years to their
life and life to their years,” states Gaétan.
Gaétan and Hélène approached The Kidney Foundation, offering
to act as ambassadors for living kidney donation. Their message
is intended for the families of those affected by kidney failure.
“If there is someone in your family that has kidney disease – and
you could be compatible,” says Gaétan Frigon, “don’t hesitate!
A kidney donation is not something you can ask of someone, it
is a gift that really needs to be offered.”
PETER HILL
Reaching Out
For A
Kidney Donor
P
eter Hill was born with Alport Syndrome and knew
from an early age he would eventually need a kidney
transplant. What he didn’t know was that he would
come away from the transplant experience with a renewed
faith in human nature.
Peter says, “In my third year of university, my doctor told
me that I would need a transplant soon.” Despite Peter’s
initial desire to keep his circumstances quiet, his parents
immediately sent out an email to let family and friends know.
requires renal transplantation. For the latter to occur he will
require a live donor who has matching blood group which is
O positive. [Peter’s doctor] has suggested that we first canvass
our family members who are willing to help Peter. We are well
aware that this is a serious decision. All potential donors would
be appropriately screened to ensure that their gift of life would
not jeopardize their health.
“Within minutes, my cousin Kirk from Florida responded
saying he would be willing to help me and that he had
already spoken to his employer to let him know he needed
to take some time off.”
“I was shocked,” Peter said. “I had only met my cousin
four or five times in my life and he was willing to do this
amazing thing for me. His act of kindness not only has
made me feel like an entirely new person, but it has also
restored my faith in people.”
Many kidney patients feel taken aback when told they
should search for a living organ donor. Peter Hill’s parents
share the note they sent to family for this purpose, hoping
it may help others.
Hello Everyone,
It has come... the time that we need to share with you all what
Peter has been going through since he was a baby. Peter has
Alport Disease. This is a disease which affects predominantly
the kidney resulting in kidney failure. There has been
progressive deterioration in Peter’s condition with increasing
symptoms of renal failure which is now affecting his daily
living. His Nephrologist is of the opinion that he currently
3 Days
100 KM
K Country to Calgary
Join us on an epic journey
to fight kidney disease.
Failure is not an option
kidneymarch.ca
15
MICHAEL BUBLÉ
Asking You to Help
Raise Awareness for
Kidney Disease
M
ichael & the Bublé Family are asking you to help
raise awareness of Kidney Disease.
“A good friend of ours is awaiting a kidney transplant
and donor. You too may have a loved one suffering
from this disease – 3.5 million Canadians have
kidney disease.
“Learn more and share this with as many people as
you can. Visit The Kidney Foundation of Canada
website at www.kidney.ca/organ-donation
or your local area Kidney Foundation to learn
about ways you can help.”
Creating a
better,
brighter
future
through
collaboration
16
Astellas is inspired by a vision for a
healthier world. Our bright employees are
determined to impact the world in big and
small ways. And while our primary focus is
on developing progressive therapies,
we are also dedicated to positively
affecting our local communities.
At Astellas, we are a group of driven
people compelled to change tomorrow.
J AYA K AT WA R O O
Waiting For
A Miracle
T
wenty-five-year-old Jaya Katwaroo is excited about
being able to enroll in her dream program, an esthetics
course at Toronto’s George Brown College. “As soon as
I am stable enough for nocturnal hemodialysis (HD), I will be
able to start school, maybe this fall,” she says hopefully.
Making plans for her career is an act of great courage for
a young woman who’s struggled with health problems her
whole life, and who has been on hemodialysis three to four
times a week for over six years.
Jaya explains, “I was born with one-third of one kidney and a
non-functioning bladder. So I’ve lived with everything – being
bullied, being teased for something I couldn’t help.
“Having to live with a disease like that – it changes you.
You find peace within yourself, you learn to deal with it and
accept it for what it is. I told my mom, ‘It’s not a problem, it’s
just life – it’s who I am.’”
The day Jaya started dialysis is a moment etched in her
memory. “After my bladder augmentation surgery at 17,
I thought I was invincible. I thought the worst had happened.
I knew dialysis was a possibility down the road, but I was in
shock when I got the call just three years later saying, ‘You
have to start dialysis – now.’
“I was in the procedure room getting a permanent catheter
[a plastic tube placed in the central vein in the neck that
connects to a dialysis machine; the machine removes
wastes and excess fluid from the blood] implanted so they
could start dialysis and the doctors had to hold me down
and say, ‘Jaya, if you don’t do this you will die.’”
“Having to live with a disease
like that – it changes you.
You find peace within yourself,
you learn to deal with it and
accept it for what it is.”
Now on the transplant list, Jaya is hopeful she will get
a call, or find a living donor before she gets sicker. She
admits some days it’s hard to keep up her naturally positive
outlook, especially without her mom around.
Looking at Jaya today, how gracefully and confidently
she carries herself, no one would guess what she’s been
through, or that she struggles daily to manage chronic
kidney disease.
Jaya’s mom was also on dialysis at the time as a result
of complications of diabetes. “The only thing that got me
through my first dialysis treatment was my mom holding
my hand and saying, ‘We are in the same boat now. Don’t
worry, you’ll be okay.’”
She bristles at the thought of anyone seeing her as a victim,
but she’s decided it’s important for her to tell her story
rather than pretend everything is okay. By doing so, she
hopes to raise awareness about the importance of organ
donation and transplantation and ultimately, help other
patients waiting for a transplant.
The pair went together to dialysis for three years before
Jaya’s mom passed away in 2012. Sadly, Jaya’s mom was
too ill to receive a transplant when she finally got the call
that a kidney was available.
A source of inspiration for her is her two-year-old niece,
Bianca. “I can’t imagine not being here to watch her grow
up or not being there for her sweet sixteen, her college
graduation or her wedding day.”
17
DR. JOHN B. DOSSETOR
“ The outlook for
kidney failure has
changed from
hopeless to hopeful.”
D
r. John Dossetor coordinated the first successful solid
organ transplant in Canada – and the Commonwealth
– in 1958. Shortly after that, in 1964, he co-founded
The Kidney Foundation of Canada.
“The changes since 1958 have been enormous. The outlook for
kidney failure has changed from hopeless to hopeful,” he says.
“It’s been 55 years since that first kidney transplant,”
Dr. Dossetor notes. “The first donor, Nola Johnson, who gave
a kidney to her identical twin sister Moira at age 15, lives
in Ottawa and is in good health. When the transplant was
arranged, we had no idea how long someone could live on
one kidney. All we knew was that the skin graft between the
two of them wasn’t rejected. Drugs to suppress the immune
system to prevent tissue rejection of the kidney came later.”
It’s fitting that the first meeting of The Kidney Foundation of
Canada took place in the Johnson home in 1964.
“Together with Dr. Guy Lemieux from the Hôtel-Dieu Hospital,
I had the privilege to be part of setting up The Kidney
Foundation while I was at the Royal Victoria Hospital in
Montreal,” Dr. Dossetor remembers. “We felt we needed
proper funding for kidney research to better understand the
causes of kidney failure. In the first few years, we raised
$3,000. It’s been around 4 million dollars a year raised for
research for quite some time now. This is what gives me
hope and inspiration.”
“If you’re worried about the future,” Dr. Dossetor says, “just
look back on the last 50 years. There’s been great progress.
And what do we expect in the future? Well I don’t know, but
18
why should it stop? I think there will be more prevention,
more knowledge about what predisposes people to kidney
disease, and the progress of kidney disease will be slowed.
People are dedicated to improving things.”
NOL A JOHNSON
Helping Moira and Others
Down the Road
A
s Nola Johnson, now 70, remembers it, “When Mom
said out loud Moira needed a transplant, I volunteered
right away. Anything I could do for Moira, I would do.”
Moira had woken up suddenly ill in March 1958, and then
fallen into a coma. She was diagnosed with kidney failure. Her
transplant was done just two months later. “A month after the
surgery, Moira was home and lived a normal life for 16 years,”
says Nola.
“In the fall of 1974, Moira had kidney disease again in the
donated kidney. She went on hemodialysis right away,
keeping her full-time job at Reader’s Digest Magazine and
dialyzing three times a week.”
She never complained,” Nola says. “I always said I wanted to
be like her.”
“Moira always said there was a reason she became ill. Our
transplant was a way to help people down the road,” Nola
notes. Moira survived for 29 years after the historic
transplant but passed away in 1987, after a battle with
breast cancer.
“We became closer after the transplant,” says Nola. “We
never really talked about what I had done for her, but I knew
she was grateful; and I was just happy she had a better life.”
Because the twins shared the same blood and tissue groups,
Nola wasn’t surprised when she was diagnosed with kidney
disease in 1974. But she continues to overcome the odds,
just like she and her twin sister did six decades ago.
“I follow doctors’ orders,” she says, “and am on blood
pressure medication and a strict low sodium, potassium and
phosphate diet. I was told in 1974 that I’d be on dialysis in 20
years. But it’s been nearly 40 years. It could be another 1020 years before I need dialysis.”
DR. R AY UL AN
Surprises and Inspirations
W
hen Dr. Raymond Ulan was
a resident under Dr. Lionel
McLeod at the University
of Alberta Hospital, nephrology was
not yet its own field of study. On
December 21, 1962 in collaboration
with Dr. Belding Scribner at the
University of Washington in Seattle,
this team started the first patient in
Canada on chronic hemodialysis therapy.
As he reflects on the many major advances in the field,
Dr. Ulan says, “I am disappointed by the fact that we still
haven’t solved the problem of organ donation. When I started
in this field, I thought that in 25 years dialysis units would
be like the tuberculosis sanitariums of the old days – gone.
But we haven’t solved it. I think organ donation is the major
challenge of the next decade.”
On the flip side, Dr. Ulan has been amazed by “how well
people do on dialysis even though the treatment only
replaces 15-20% of kidney function. People can live on
dialysis for 20-30 years – they can go to university, earn
PhDs, and go through medical school. If you’re on dialysis,
there’s no reason you can’t do what you always were
planning to do. Don’t stop living just because you don’t
have a transplant yet. Kidney transplantation is the best
replacement treatment for chronic renal failure and our
challenge is to make this treatment available to all
suitable patients.”
He recounts some of the most inspirational moments in
his career:
• A patient on hemodialysis for more than 40 years who
did her PhD in Education: she did as well as she could on
dialysis and didn’t want a transplant.
• Dr. Robin Eady, after two years in medical school in
London, England, was among the first dialysis patients
at the University of Washington in Seattle. He then
was transferred to the University of Alberta Hospital in
Edmonton in 1963-1964 for continued dialysis until a unit
was set up in the UK. After completing his medical school
studies, he trained as an academic dermatologist. His
research area of interest is Epidermolysis Bullosum and
he has made major contributions to our knowledge and
treatment of this devastating disease.
• Participating at a transplant centre in the Canadian
Cyclosporine Study led by Dr. Cal Stiller. “It’s still one of the
major contributions by Canadian nephrology,” says Dr. Ulan.
• The development of synthetic human erythropoietin,
which “greatly reduced the need for blood transfusions
for dialysis patients and had a positive impact on
transplant suitability.”
Above all, Dr. Ulan cites the greatest satisfaction of his fortyyear career had to be “calling a patient in the middle of night
to say, ‘we have a potential transplant for you and we want
you to come in.’ It was a game changer, a life changer, for the
patient that puts it all in perspective.”
DR. ROBIN EADY
Longest Surviving Kidney
Patient In The World
W
hen Dr. Robin Eady
began suffering terrible
headaches and high blood
pressure as a second-year, medical
student he was diagnosed with
end-stage kidney failure. It was
1962, and the diagnosis seemed
like a death sentence. There was no
dialysis anywhere in Europe.
Robin’s parents read about a
dialysis unit in Seattle, Washington,
and wrote to the coordinator, Dr. Belding Scribner. Though
there were no spots in Seattle, Dr. Scribner conferred with
19
Dr. Lionel McLeod in Edmonton and agreed to start Robin on
dialysis in Seattle and then move him to Dr. McLeod’s fledgling
dialysis program at the University of Alberta.
The now retired dean of dermatology at St. Thomas Hospital
in London, England, would spend 25 years on dialysis,
predominantly home hemodialysis, before having a transplant
in October 1987. Though he managed well on dialysis and
wasn’t putting his life on hold waiting for a transplant, Robin
says “the transplant was like a new lease on life”.
“As I’m now apparently the longest surviving kidney
patient in the world,” Robin says, “I might be allowed to
give some advice to other kidney patients: Never stop
believing. You have to continue thinking you’re going to do
all right.
“When I got ill, I could look up in any medical text book that
my days were numbered, but I didn’t accept that. It’s a
question of attitude. Nowadays there’s no need for people
with kidney disease to feel there aren’t options.”
D R . C A LV I N S T I L L E R
Making A
Mark In
Transplant
History
D
r. Calvin Stiller, a native of Saskatchewan, made
an indelible mark in transplantation history by
coordinating the Cyclosporine Study out of London,
Ontario in the 1970s. It was the first multi-centre clinical trial
in kidney transplantation in North America, involving 21 of
the 22 centres in Canada. This trial created the foundation
for future studies that put Canada on the world stage in
transplantation. Today, cyclosporine remains one of the drugs
of choice to combat tissue rejection after transplantation.
Swiss researcher, Dr. Jean-Francois Borel, first examined
cyclosporine, a drug derived from a fungus found in the
Norwegian fiords, while working for the company Sandoz.
He noted cyclosporine was able to inhibit T-cells [cells that
20
fight infection in the body], but because it didn’t have the
antibiotic properties that Sandoz was looking for, Dr. Borel
was asked to discontinue his research on this molecule. It
was a directive he did not follow.
Instead, Dr. Borel gave Dr. Stiller a vial of the drug after a
chance meeting at a conference in Rome in 1978.
Dr. Stiller’s team became one of the first in North America,
and the first in Canada, to use it successfully on humans.
From that moment, the transplant landscape completely
changed. “Before cyclosporine, we lost 50% of all kidney
transplant patients, many dying with functioning kidneys,”
he says. “After the introduction of cyclosporine, it was like
night and day.”
Kidney Patients Can Still Have
Their Dreams Come True
In addition to his ground-breaking work as a researcher,
Dr. Cal Stiller is a successful serial entrepreneur and an
optimist when it comes to the promise of research for
kidney patients.
“I would say to people on dialysis, or who have received a
kidney transplant and have limitations coming from that,
that they can still have their dreams come true. Based on
my experience with kidney patients, I think people with
disabilities can accomplish things in ways that people
without disabilities, frankly, never achieve.” He believes
kidney patients learn how to bring powerful latent abilities
to the forefront – abilities they may never have developed
otherwise.
Dr. Stiller also believes the ‘disability’ of kidney disease
is one that will diminish over time. He cites four major
breakthroughs coming in the not-so-distant future that will
dramatically improve the lives of kidney patients.
1. Genomics: “Polycystic disease, hereditary nephritis,
membranous glomerulonephritis and diabetic
kidney disease all have a fundamental metabolic and
structural abnormality. Once we find the pathways by
which they are formed, we will be able to search for and
design a molecule to block them – and we will find that
out through genomics.” He predicts this will happen
within 10-15 years.
2. Stem cell rejuvenation: “Using stem cells, we can
already form nephrons under the skin in mice. Now we
need to be able to do that within the structure of the
kidney. It’s a matter of time. My bet is there will be a
clinical trial on stem cells and kidney disease in the
next five years.”
3. Implantable artificial kidney. “Using a combination of
nanotechnology and stem cell technology, we will be
able to produce something which can be hooked up into
the vascular system to purify the blood. My estimate is
this will happen in about 10 years.”
4. lncreasing the lifespan of a transplanted kidney:
“Although cyclosporine and rapamycin have changed
the incidence of acute rejection, the incidence of
chronic rejection hasn’t really changed, and the half-life
of a transplanted kidney is still 10-11 years.” Dr. Stiller
believes this can be doubled through a combination
of more precise suppression regimes and a better
understanding of the biomarkers that first indicate
rejection. “I expect we’ll be able to double the life of a
transplanted kidney within the next 5-10 years.”
THE ECONOMIC BENEFIT
OF A KIDNEY TRANSPLANT
• The cost of in-centre hemodialysis, the most common treatment for kidney failure,
is about $83,000 per patient per year.
• Home-based dialysis such as peritoneal dialysis and home hemodialysis are less
costly, ranging from $30,000 to $58,000 per patient per year.
• Overall, regardless of the type, dialysis costs the Canadian health care system
$2.5 billion per year.
• The initial one-year cost of a kidney transplant is $120,000. Transplantation follow-up costs, including medication, drop to under $22,500 per year in subsequent years.
• Over five years, each kidney transplant saves the health care system $200,000
compared to the most common form of dialysis.
21
“By the end of my life,
I would like to see
nephrotic syndrome gone.”
Leslie Pearson
T H E P E A R S O N FA M I LY
D
r. Heather Reich, a Nephrologist and
Clinical Scientist at Toronto General
Hospital, is the recipient of one of the
two Pearson Family Research Awards.
Dr. Reich underscores that research
awards, “are essential... Governmentsupported research funding is
increasingly limited and donations are
critical to keep kidney disease research
moving forward.”
She explains that her research focuses on
“determining if one of the most common
causes of kidney failure in people under
65 years (IgA nephropathy) is triggered
by infections or changes in the balance of
‘normal’ bacteria.
“If the bacterial profiles and/or diets are
different in patients with this disease,
we could design a study to treat patients
with new interventions that are less
toxic and potentially more effective than
current medications.”
22
Taking On Childhood Kidney Disease
L
IN MORE WAYS
THAN ONE
ife as they knew it changed drastically
after Leslie and John Pearson noticed
their two-year-old son Christopher’s legs
were looking puffy. A quick call to John’s MD
sister, and they were off to the hospital.
that would reduce and reset his immune
system with the hopes of controlling this
condition. After 10 days in the hospital and
many infusions of albumin, a much lighter
Christopher went home with his family to
follow a very strict drug protocol as set forth
by the doctors. It was a frightening period of
“wait and see” for the young parents.
Emergency room doctors at Sudbury General
Hospital performed various tests then sent
them home to wait for the results. “We knew
Baby Christopher
“Over the next eight months,” Leslie says, still
something was very wrong when the doctor
struggling with tears after all these years,
(M. Storr) came knocking at our front door the
“Christopher’s condition improved very slowly, eventually
next day. He said tests confirmed that Christopher had a
going into remission and allowing him to function as a normal
kidney disease called nephrotic syndrome. Our lives changed
three-year-old.” Everyone was delighted, as the prognosis
in that instant,” says Leslie.
over the year-long ordeal was somewhat uncertain at times.
Dr. Storr started baby Christopher on high doses of
prednisone and followed his progress for many months.
Unfortunately, Christopher turned out to have
steroid resistant nephrotic syndrome and was
beginning to look like the “Michelin Man,”
Leslie remembers. His tiny frame was
carrying an extra 10 pounds of water. After
a few days back at the Sudbury Hospital,
Christopher was transferred to the Children’s
Hospital in London, Ontario.
Dr. Morrison Hurley, who has served as
President of The Kidney Foundation’s British
Columbia Branch, along with Drs. Matsell and
White, were charged with Christopher’s care.
Leslie and John recall that as they struggled
to understand exactly where Christopher’s
illness could lead, Dr. Hurley’s approach was
reassuring. “He urged us to take it one day at
a time, and deal with things as they come. The
doctors were our lifeline to hope.”
The doctors’ strategy was to perform a biopsy
and then administer drugs to Christopher
“Never give up hope,” Leslie urges other families struggling
with a kidney disease diagnosis. “Doctors know a great deal
about the kidney but there are still things about this very
important organ that are not well understood. This can be
comforting because it leaves room for surprises.”
Today, Christopher is fully recovered and is in his last
year of engineering at McMaster University, but the
couple remains powerfully impacted by their experience
and struck by how much more there is to learn about the
prevention and treatment of childhood kidney disease.
Leslie and John are determined to help other families going
down the same road they did.
In 2012, the couple established The Pearson Family
Research Award to support two researchers annually in the
area of nephrotic syndrome. Their awards support some of
the very best kidney researchers in Canada, as determined
by a rigorous peer review by experts.
“Dialysis and transplants are wonderful – but to me it’s about
solving the problem before you get to that stage. That’s my
goal. By the end of my life, I would like to see the mystery of
childhood nephrotic syndrome solved,” says Leslie.
23
CHANGE
WAS IN THE AIR
How mining CEO Graham Farquharson’s life took a
wonderful though unexpected path
I
t wasn`t the course Graham Farquharson, now President
of Strathcona Mineral Services, expected his life to
take when he started out his career as a young mining
engineer. “Early on, I was very focused on my job,” he says.
“Then I also got married and all of a sudden there were all
these medical challenges. Gradually, I became more involved
in understanding and supporting medical research. But that
wasn’t the original game plan.”
Change was in the air when Anna-Liisa, originally from
Finland, applied for a job at Strathcona in 1974. “She had
very good dictation skills which were important to me,”
says the well-respected executive who would later expose
the Bre-X mining scam. They spent the next 17 years in
constructive workplace collaboration.
“In 1991, she asked to speak with me, which was unusual.”
Anna-Liisa told him one of her kidneys had been removed
due to cancer years earlier, and now there was a spot on
the remaining one. When she went for surgery a few weeks
later, Graham visited and he says that was when “the light
bulb went on”.
He invited her out to dinner to celebrate the removal of the
cancer. It ended up being a five-hour meal. “A few days later,
I suggested we get married.
“We were married on Saturday, had our honeymoon on
Sunday, and were back to work on Monday. That day I called
the slightly astonished staff together to announce the
news,” he says smiling. They would be happily married for
another 17 years.
Cancer returned in 1993, and five years later, the rest of
Anna-Liisa’s remaining kidney was removed. She then had
to begin treatment for kidney failure, but hemodialysis did
24
not work well for her. She struggled with it for a year, during
which she suffered extreme hypertension and even grand
mal seizures.
After discussion with doctors about other treatment
options, Anna-Liisa and Graham learned about peritoneal
dialysis (PD), a treatment Graham still views as an
engineering marvel in its simplicity. Anna-Liisa started PD
and remained on it for 10 years. “It made a big difference.
She felt more in control of her life, and even started going
on regular 10 km walks.”
He hopes others can find inspiration in Anna-Liisa’s story
and advises other kidney patients not to give up hope.
“When Anna-Liisa was diagnosed in 1973 at age 35 with
kidney cancer, her prognosis was grim. She wasn’t expected
to live very long. Yet she enjoyed life for another 35 years.”
Together, Graham says, the pair learned to “seize the good
news and look for more”.
Though he may not have predicted he would eventually
marry that exceptionally proficient secretary from Finland,
to this day, Anna-Liisa’s incredible courage, and never-giveup attitude remain a great source of strength and inspiration
for him. “Despite the problems that kept coming along,” he
says, “she never gave up hope.”
The Farquharsons’ moving love story has also had enduring
and profound effects within the kidney community.
Inspired by his wife’s courage and resilience, along with
a desire to reduce the suffering of other patients, today
Graham is a strong supporter of The Kidney Foundation and
believes he is likely “the largest single supporter of kidney
cancer research”.
G R A H A M FA RQ U H A R S O N
“ Seize the
good news
and look
for more.”
25
JASON KROFT
“There were
no limits because of
my kidney disease.”
R
ecognized as a Leading Lawyer Under 40 in 2013 by
Lexpert® business magazine for lawyers, Jason Kroft
excelled not only in university and law school, but also
in keeping in check the chronic kidney disease he’d had since
he was a toddler.
legendary founder of Stikeman Elliott, Fraser Elliott, reached
out to him personally when he was a young associate in the
huge firm to share his own kidney transplant story. “I think he
wanted me to know there were no limits because of my kidney
disease,” Jason recalls.
The soft-spoken family man and active community volunteer
credits family support, proactive doctors, and careful
monitoring of his health with extending the life of his kidneys
for nearly two decades. But when he looks back, Jason
knows that declining kidney function was having an impact
on his life that he didn’t fully realize at the time.
In part because of the support he’s received, Jason does
whatever he can to help other patients. He and his family
have been steady – and visible – contributors to
The Kidney Foundation, supporting patients who depend
on short-term financial assistance, and he donates a lot of
time helping to strengthen the organization. He’s also the
Ontario Chair of The Kidney Foundation’s New Challenge
Campaign (www.kidneycampaign.ca). “I am involved
with a number of charitable causes,” says Jason, “but
The Kidney Foundation is different – it really feels like
a family.”
When his nephrologist proposed a pre-emptive transplant,
he was a newlywed in his first year of law practice. His mom
Sharon was first in line to be tested.
“Within minutes of the transplant on September 12, 2000,
people commented that I looked more vibrant, and had
more colour in my face. That was my first realization that I
had been sicker than I ever appreciated. We all have a great
capacity to live with illness, especially a chronic disease that
incrementally gets worse over the years.”
From his many years spent in doctors’ waiting rooms
interacting with other patients and their families, Jason
knows that many other patients do not navigate the kidney
journey as well as he has. “There’s a big segment of the
kidney population that is very sick, often marginalized. We
don’t see them because they’re usually at home and others
are doing things on their behalf.”
Jason believes it’s very important that members of the kidney
community reach out to do what they can to support each
other. He remembers how touched and inspired he was when
26
He knows there’s a lot more that can be done to help kidney
patients and their families, but he wants them to know
“there are lots of people working hard to improve things on
your behalf”.
Jason continues to manage his health issues, including
recovery from a heart attack in 2012; but overall, he feels
incredibly fortunate to be able to lead a full and active life. He
is optimistic about the future. “That is how I was raised,” he
says. “My grandfather used to tell my parents, ‘Jason’s life
won’t be easy – but it will be extraordinary.’”
“If you were to ask my friends and family about me, I hope they
would say, ‘He’s a good lawyer, he’s a great father, he’s gotten
involved in The Kidney Foundation.’ Hopefully, the story is just
in the middle and there’s a lot more to be written.”
R AICHELLE
AND REUMAH
ABRAHAM
Identical In Every Way
“They felt better after just a week on dialysis.”
I
dentical twins, Raichelle and Reumah Abraham have
overcome a lot in their short lives, including mitochondrial
disease (a disorder that occurs when mitochondria in the
cells do not produce enough energy for the cell to function) at
2 years old, and then kidney failure at ages 10 and 11.
Parents, Susen and Anil, say the girls’ kidney function
began to decline at age 7 – and continued declining over
the next three years, until December 2010 when their lives
changed drastically.
Raichelle started coughing uncontrollably at church.
Her parents took her to Emergency. “It turns out water
was collecting in her lungs because her kidneys had
stopped working. That’s when dialysis life started,”
remembers Susen.
After Raichelle’s life-threatening experience, doctors acted
proactively on Reumah so the same thing wouldn’t happen
to her, and started her on dialysis a few months later.
“Dialysis was a happy time for the girls,” Susen recalls,
“after three years of being sick they felt better after just
a week on dialysis.” Adapting to the dialysis routines
was understandably difficult for Susen, an occupational
therapist and Anil, an executive at IBM, who felt like they
lived at the hospital. Nurses found a desk for Anil so he
could work as the twins underwent dialysis.
After a year on dialysis, Raichelle received her kidney
transplant in December 2011, and Reumah received hers
just three weeks later.
“For three years their creatinine (the toxins in the blood
the kidneys normally filter out) count had kept climbing to
mid-600s. I was told that the normal count was 53 or below.
Immediately after Raichelle’s transplant, her creatinine was
down to 180. Just six hours before, it had been in the 600s.
That was when I started to cry. I was so relieved, I cried for
two straight days.”
Though their kidneys are working perfectly, and they have
so much more energy than ever before, the Abraham girls
have experienced some side-effects which they think are
related to the transplant medication, including serious vision
problems. Even so, Susen and Anil say it was all worth it.
They are deeply thankful for the kindness of the strangers
who decided to donate their children’s organs so their girls
could live normal lives.
A year after Raichelle’s transplant, Susen sent thank you
letters to the girls’ donor families. The notes read, in part,
“In the midst of your pain and grief, I have no words to say
for the brave decision you made to help others – who are
critically ill – through organ donation. Thank you does not
seem adequate, but it is all that we have.”
27
Unstoppable
A LLISON
Baxter Corporation is proud to support The Kidney
Foundation and to advance options in care for
kidney patients. A dialysis pioneer for more than
50 years, Baxter developed the first commercially
built artificial kidney, and worked with Canadian
nephrologists to develop peritoneal dialysis as the
world’s first portable home dialysis therapy, now
used daily by patients worldwide to help save and
sustain their lives. Today, Baxter remains dedicated
to innovating therapy options and helping kidney
patients live well. Learn more: www.baxter.ca.
28
K NUDSEN
A
rtist and Design Consultant Allison Knudsen isn’t a typical kidney
patient. She’s dealt with kidney disease (diagnosed as HenochSchönlein Purpura or HSP) since the age of six, after a severe bout
of bronchitis. Her kidney function slowly deteriorated until she agreed
to start peritoneal dialysis (PD) at 15. Now at 40, it’s clear she’s pretty
much unstoppable.
Allison’s first transplant at age 16 worked for two years until she was
diagnosed with Hodgkin’s Lymphoma at age 18. She’s proud to say she,
“Kicked cancer’s butt pretty well!” Unfortunately, the chemotherapy that
saved her life destroyed her new kidney and she was forced to return to PD.
Having been on some form of dialysis for over 25 years, Allison says,
“Dialysis seems to be the thing that works best for me. When I first started
on PD I was shocked at how well I did. I grew six inches, got stronger and
played sports again! As a teen, I was terrified of a tube in
my stomach, but when I finally agreed, I couldn’t believe
how great I felt.”
As a person who had kidney failure as a child, Allison
found the transition to the adult medical system
especially ‘shocking’. Reflecting on the transition, Allison
shared her first reaction: “You think, ‘Nobody’s looking
after this? Nobody’s taking care of that for me? I have to
do it myself - what?!?!’”
But she soon learned to cope – so much so that after
graduating from Commerce at Queen’s University, Allison
coordinated with Baxter Corporation and their world-wide
organization to travel across Europe in a Volkswagen van.
Nothing was going to stop this Belleville, Ontario native!
With dialysis being such a big part of her life, it was fitting
that Allison named her first puppy, a chocolate Labrador
retriever, “Baxter” after the company that produces
various dialysis supplies. “Baxter” was printed on the
boxes that were delivered to her home weekly. “No one
else could ever get those boxes apart, but Baxter loved
shredding every last bit of them down to puppy bite-size
pieces when I was out of the house.” Allison and Baxter
would spend 15 years together.
Allison had another transplant four years ago. Unfortunately,
it proved unsuccessful. Remarkably, all these ups and downs
have only made her stronger. “There have been happy and sad
moments dealing with renal failure,” says Allison. “But over time,
I’ve learned to roll with the punches on the roller coaster of dealing
with a chronic condition.”
“I realized at that point
that whatever was going to
happen to me, I had options.”
Allison says her most liberating moment actually came when her
first transplant failed and she’d “beaten” cancer: “I realized at that
point that whatever was going to happen to me, I had options –
that I was the best person to make the decisions that were best
for me. After that, I just knew I could get through anything.”
Allison says she’s not missing any opportunities in her life
and, given her past transplant experiences, she’s not ready at
this point to take a chance on another transplant. That being
said, she’s excited by new research happening in the area of
transplantation. “I’ve been reading about the research going on
now and the future possibility of having a successful transplant
without immunosuppressant drugs. Now that’s amazing.”
Home is where PD is.
Baxter Peritoneal Dialysis
(PD) gives you access to
the treatment you need in
the comfort of your home.
Ask your healthcare team
about your home dialysis
options.
29
DETERMINATION
ISN’ T ALL THAT RUNS IN THE FA MILY
B
usiness savvy has run in the Leon family since
Alban Leon, a hard-working Lebanese immigrant,
founded the first Leon’s Furniture store in Welland,
Ontario in 1909. Terry Leon took the reins of the company in
2005 and has helped the furniture chain grow to become the
largest home furnishings retailer in Canada.
But business isn’t all Terry knows about. He understands a
lot too about kidney disease. Yet the outgoing and dynamic
Leon’s CEO has an unusually calm and optimistic view about
a disease which has taken a toll on his family.
Terry’s optimism comes in part from the fact that he saw
his loved ones successfully manage the disease through
discipline and determination. “Their commitment to doing
what they had to do to live productive and meaningful lives
was very inspiring.”
“My father and two of my uncles were diagnosed with kidney
disease later in their lives. All three went on dialysis, and my
Uncle Joe is still on dialysis and doing really well.”
Terry was initially surprised by the fact that the treatment
methods, including medication regimes and dialysis
modalities, were actually different for all three affected
family members. “Because my dad was older and had heart
disease, hemodialysis was not an option for him, like it was
for my uncles. It’s a very complex disease, but treatments
can be tailored for each patient’s individual needs.
Discovering that was amazing to me.”
It’s clear that Terry has been profoundly affected by
watching his family members tackle kidney disease.
“When you have something like this in your family, it never
leaves you. I know from my experience that it’s just as
important for the family members of the kidney patient as it
is for the patient to reach out for support.”
What does the head of Canada’s top furniture retailer most
want other kidney patients and their families to know?
“You are not alone,” says Terry.
“There are great support groups out there for you and
your family that can make you feel more comfortable and
confident. No matter what your circumstances are, there are
a variety of medical treatment options available. You can take
advantage of the ones that will work best for you and live a
full and productive life for many years to come.”
Terry looks forward to the day researchers find a cure for
kidney disease. Until then, he believes that more education
and awareness are critical to help the general public, as
well as those at risk, to understand there are ways to delay
or even prevent disease onset.
That’s why Terry has become a national spokesman in
The Kidney Foundation’s new public service
advertisements aimed at raising awareness of kidney
disease and its risk factors
And Terry knows first-hand the benefits of being proactive.
Today, at 63, he is the picture of health and does not let much
slow him down. He has not left his health to chance either.
Over the years, he has made a point to learn all he could
about the disease that is so prevalent in his family. He has
taken important steps to ensure his kidneys stay as healthy
as possible, integrating a wholesome diet and regular
exercise into his lifestyle. He also sees a nephrologist and
takes preventative medication.
Terry is keenly aware that kidney disease is not isolated
to a few genetically predisposed families and is convinced
that more awareness will help everyone. Today one in ten
Canadians actually has kidney disease, and because the
symptoms are often silent, many of those who have it don’t
even know it.
This article is sponsored by Amgen
30
TERRY
LEON
CEO, Leon’s Furniture Canada
“I feel strongly
that if more people
understood how
prevalent kidney
disease is, more
people would take
the precautions that
are available to
prevent it.”
31
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" #" ! $#
!!
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%!
Finding Our
“New Normal”
Paralympian runner Jason
Dunkerley found himself heading
down a strange and unfamiliar
road when his wife, Colleen
Hayes, was diagnosed with
kidney failure at a Beijing hospital
during the 2008 Paralympics.
C O L L E E N H AY E S &
JASON DUNKERLEY
B
ack home in Canada, Colleen, who works for a
marketing company, saw her doctor, and began regular
clinic visits that confirmed that her “progressive renal
insufficiency” was linked to diabetes.
It took them a while to understand what was happening and
to arrive at what Colleen calls finding their “new normal”.
Says Jason: “We thought it had to be a mistake. Even after
the diagnosis, not a lot changed in our lives right away,
so it didn’t feel totally real. The prospect of dialysis and a
transplant seemed very distant.”
The couple, only recently married, and both legally blind,
were used to overcoming obstacles. They immediately
began to try to find out as much as possible about their
new predicament.
In their quest for information, they left no stone unturned
and were advised to look at The Kidney Foundation’s website
(www.kidney.ca). It helped them feel more confident.
As they considered treatment options, Jason recalls,
“I always knew I wanted to be tested as a possible donor, it
was a no-brainer for me. After I found out I was a match, it
started to get a bit scarier, a bit more real.”
Colleen inspired him, he says. “She approached it with
such grace. She didn’t complain and took everything in
stride. That really helped me with my nervousness. It
was overwhelming at first, going into the unknown – not
knowing what lies ahead.”
Likewise Colleen says the incredible support she received,
especially from Jason, was her main source of hope.
“From the beginning he was right there. He came to all my
appointments, and even changed his diet to the kidney
diet so we were eating the same things. When I eventually
went on dialysis, he stayed with me through the last hour
on dialysis and had meals ready when we came home.”
For his part, Dunkerley, now working toward a master’s
degree in World Literature and Cultures, was surprised by
“how quickly we were both back up on our feet” after their
transplant on March 14, 2013.
He urges more people to consider living organ donation.
“Colleen and I have shared an amazing journey. I
appreciate every day in a way I didn’t before. The
experience has made me a better person.”
DID YOU KNOW?
The Kidney Foundation of Canada has launched
an online nutrition and diet resource for people
living with kidney disease.
www.kidneycommunitykitchen.ca
33
Stopping Kidney Disease
Before It Starts
W
hen Dr. Shiv Jindal came to Ottawa in 1967, there was only one
dialysis machine in the city. Reflecting on his 40-year career in
nephrology, which involved helping to establish the first dialysis
unit and kidney transplant program in the Ottawa area, he says, “the
greatest thrill to me has been to see how much we can offer to kidney
patients today, when at one time, there was nothing to offer. Now we can
give patients longer life, and with a transplant particularly, give a good
quality of life. It’s been an absolute joy for me.
“Even though we have had great achievements, the burden of chronic
disease is still enormous. The number of patients is increasing, especially
patients on dialysis. The sad part is we can’t transplant more than 15-20%
of people on dialysis. What about the other 80 percent? That’s a big number.
That’s why I believe we have to go back to the basics of primary prevention.
“For 70% of end-stage kidney disease patients, their disease comes from a
combination of diabetes, high blood pressure and aging. We know how two
of these conditions (diabetes and high blood pressure) start, and how they
affect the kidneys. We know how to control these conditions so they don’t
lead to kidney damage, but we do not do it.
“I think the focus of a successful primary prevention strategy has to
be a comprehensive approach with an integrated team of doctors,
educators, dieticians, nurses whose collective role is to educate
and conduct basic research. We want to be able to diagnose at
the pre-clinical stage of disease. To really tackle the early part
of disease, we need involvement of parents and teachers – the
people responsible for on-going child care – to be part of a childoriented strategy. The Kidney Foundation can play a major role
in that. Legislation will help, and the food industry needs to get
involved. My hope is this happens not over the next 50 years –
but over the next 5-10 years. It’s long overdue.”
DR. SHIV JINDAL
THE PHIL ANTHROPIST
In 2007, Dr. Jindal and his wife, Sarita, donated
$1 million toward a Research Chair focusing on
the primary prevention of kidney disease at the
Ottawa Hospital. It’s a program he hopes will
one day reduce the need for people to undergo
dialysis and kidney transplants. Dr. Manish Sood
was appointed to the Chair in 2013.
34
A focus on primary prevention is more important than ever.
Dr. Jindal says, “There is hope for kidney patients – no
question. Researchers are working on solutions. But we have
to be realistic. There is no cure for end-stage kidney disease.
Our present efforts are simply to control the progression of
the disease as much as we can (secondary prevention); we
have to do much more in terms of primary prevention.”
Giving Voice
to a
Wonderful Gift
“Talking about it was more
important than I imagined.”
DAV I D B ROW N
I
t’s safe to say David Brown is not willing to waste a precious
second of his life. The many people who encounter the
respected Toronto financial planner and chartered life
underwriter would never guess the incredible odds he’s
overcome – but he’s quick to tell them.
At age 12, David was diagnosed with glomerulonephritis, and
went on peritoneal dialysis (PD) eight years later. David says,
“I was put on PD more than 35 years ago when it was a brand
new treatment. For a young guy, it was pretty scary. The ‘silver
lining,’” he says, “were the people I met and became friends
with, the doctors and nurses and other patients.”
was a young boy killed in a car accident and his family
wanted to donate his kidneys.”
David never had the chance to thank his donor’s family
but years later, he experienced a moment very close to
that while participating in an organ donation awareness
program at his synagogue. David spoke as a kidney
recipient, and parents who had donated the organs of
their child spoke from their point of view. “I remember
the parents were in tears listening to my story, and I was
equally moved to hear theirs. It was more important than I
imagined for us to be able to give voice to our experiences.
After repeated bouts of peritonitis (infection of the peritoneal
cavity which acts as a filter in PD), David began self-care
in-hospital hemodialysis and then graduated to home
hemodialysis three times per week, eight hours each night. He
was in university at the time and had to clean and set up the
huge machine himself before and after each treatment.
“I tell almost every client my story because I want them
to recognize the fragility of life and that life-threatening
diseases, like kidney disease, can happen to anyone.
I also want people dealing with such an illness to
remember there are lots of positive things that can
happen – for example, there are parents who make the
split-second decision to donate the organs of their child.
“Even though transplants weren’t as successful as they are
now,” David says, “after approximately four years on dialysis,
I put my name on the transplant list after my final exams
on April 23, 1979 – and I got a call the next morning! It’s a
moment engrained in my mind,” he recalls. “I was told there
“I am the custodian of that young boy’s kidney. It’s part
of my duty to take care of it and do some good things
in the world – not only because I have been given the
chance to, but because I’m also propagating some of the
good things he might have been able to do.”
35
RON LOVEYS
Too Many
Kidneys?
Finding support through
The Kidney Foundation
M
ississauga’s Ron Loveys faced a situation
few people encounter – he was born with
too many kidneys. Though three kidneys
may sound better than two, when Ron learned
he had an additional underdeveloped kidney, he
also found out that it was putting his two wellfunctioning kidneys at risk.
President of one of the most highly-awarded
Ford Lincoln Dealerships in Canada, and the
Chairman of the Canadian Automobile Dealers
Association, Ron recounts how reoccurring back
pain and blood in his urine led to exhaustive
testing at St. Joseph’s Hospital in Toronto and
news that his third kidney would have to be
removed as soon as possible.
He notes that because this happened 45 years
ago, the operation was tremendously invasive
and “quite an ordeal for an active, healthy
20-year-old young man.
“I know now that I was very fortunate that my
kidney problem was discovered early enough to
prevent kidney failure; at the time, I was scared
to death. I also remember thinking, ‘Why me?’”
Ron’s harrowing experience in his youth, as
well as the fact that kidney failure has affected
a number of other family members, has made
him acutely aware of the urgent need for public
education and research related to kidney
disease and disorders.
Ron has some sage advice for anyone going
through the kind of experience he endured:
“Once you get past the ‘why me’ stage, you
can pick up the phone and find there is a lot
of support out there. Knowing The Kidney
Foundation is behind you should be reassuring
to everyone.”
36
Live Life And Pass It On
HÉLÈNE CAMPBELL
G
oogle her on the Web, and you’ll see she’s the girl
from Ottawa who danced on the Ellen DeGeneres
show after undergoing a successful double lung
transplant.
Hélène Campbell, now almost 23 years old, garnered
international attention when she spoke to Ellen Degeneres
on Skype, and then boogied onto her popular talk show set a
year later in time to a Justin Bieber tune.
Though Hélène’s illness came on suddenly, the fact that
she’d worked in a dialysis unit for almost three years before
she got sick, meant she already knew a lot more than most
people about organ donation, how successful transplants
can be, and their potential to both save and transform lives.
That first-hand knowledge helped keep her hopeful.
What surprised her most about working in the dialysis unit
was how many people needed the life-saving treatment, and
how courageous they were, showing amazing resilience.
“So many of us have no idea what it’s like to be on dialysis for
four hours, three or four times a week. We have absolutely no
idea what it’s like to be dependent on a machine.”
Says the young woman who is perhaps Canada’s most famous
transplant recipient today: “It’s terrible that we don’t have
as many organ donors as we should. In a country where we
have such amazing health care, we should be among the top
countries in organ and tissue donation and transplantation.”
Hélène is resolute about the importance of talking about
organ donation.
But having just come off of a national speaking tour
promoting organ donation, she wonders aloud, just for
a moment, if it might have been easier for her had she
not gone public and had her story not garnered so much
attention. “But then I think of all the other people who are
waiting for a transplant – and I know how tough it is to wait.
For those of us who have had a transplant, why not be proud
of the fact that we are still here, show our gratitude? Live
life and pass it on. Someone has literally passed life on to
us, so why shouldn’t we pass it on to other people?”
“Just because I
received a transplant
doesn’t mean I’m
going to take
it and run. I’m going
to let people know
why I can run.”
37
PAYING IT
FORWARD
“Use. Love. Repeat.” is the whimsical tagline for AG Hair
Cosmetics. But the sentiment seems more like a life mantra for
the company’s spirited founders, John and Lotte Davis. Over
13 years ago, Lotte donated her kidney to her husband John,
and the Vancouver couple have been paying it forward and
telling their powerful story ever since in an effort to raise
awareness for organ donation.
John was diagnosed with polycystic kidney disease in 1992,
a hereditary condition that had taken his mother in her 30s.
He says he didn’t feel particularly unwell in the years leading
up to the transplant, but a doctor’s appointment eight
years after the original diagnosis revealed his creatinine
had soared suddenly to over 800 [normal creatinine level
is between 70-100] – and he was told it was time to find an
organ donor.
The successful business couple struggled with the sudden
gravity and urgency of John’s situation. There were so
many questions and so many things they didn’t know – for
example, they didn’t yet know a pre-emptive transplant
was even an option. “We just figured somebody had to pass
away for John to get a transplant,” says Lotte. But as things
got worse, and it looked like John would soon have to go on
dialysis, Lotte asked the doctor what she thought at the time
might be a crazy question: “Is there any way I could be a
donor?” Once testing confirmed that Lotte was a match, the
whole transplant experience was over in just five months.
And they would be forever changed.
John says he had mixed emotions in the weeks leading up
to the transplant, while Lotte was ecstatic from beginning to
end. “I didn’t expect to come out feeling so wonderful about
the whole thing,” she says, “It was a gift from the moment
the hospital called to say we were a match.”
38
Says Lotte to John: “I remember your face over mine, with
your cap on, and tears coming down your face.”
“We celebrated our 16th wedding anniversary in hospital
on October 20, 2000,” recalls John smiling. “We had cake
and champagne smuggled in after the transplant. There are
pictures of us snuggled in bed together.”
The couple, who have an uncanny ability to finish each
other’s sentences, say it was one of the most amazing
experiences of their lives. But John knows that having
Lotte by his side to help advocate and ask questions
during this difficult time was critical.
They advise anyone dealing with a similar
experience to “find someone (family member or
friend) who can advocate for you if you cannot
do it for yourself.”
As a result of their experience, John and Lotte
believe strongly that more education and
awareness is needed for people to better
understand what’s involved in a kidney
donation and with living donation in
particular. John mentions a friend, touched
by their experience, who wanted to donate
her kidney. “When she came forward at
that time, no one knew what to do with
her. I am not sure why organ donation and
transplantation are still issues in Canada
– why people are still dying waiting for a
kidney. We have to get more information
out there – we need to work harder to
change social behavior.”
“I had a bit more difficulty with it,” John says, “I remember a
lot of emotions swirling around.” He decided to write a letter
to their daughters (then aged 13 and 16) to let them know
what was happening and try to allay their fears.
INTERESTED IN BEING A
LIVING DONOR?
He recalls the poignant moment waiting for his surgery,
when Lotte was wheeled out of the operating room. “You
don’t know what’s going to happen,” he says. “The most
powerful thing was her coming out and she was smiling.
There were tears in her eyes, she was so happy.”
A list of all Living Kidney Donor Programs can be
found on the Canadian Blood Services website
at: www.organsandtissues.ca/s/english-expert/
organ-registries/join-the-ldpe-registry
“I am not sure why organ donation
and transplantation are still issues
in Canada – why people are still
dying waiting for a kidney.”
J O H N & L O T T E DAV I S
39
AC HIE V ER S
CLAUDE JODOIN
H OWA R D S I LV E R M A N
Successful Montreal businessmen Claude Jodoin, Howard Silverman, and
Danny Lavy are all living proof that there is life after dialysis and kidney disease
and that it can be amazing.
40
CL AUDE JODOIN
New Beginnings
Q
uebec-based tax lawyer Claude Jodoin has learned not to let kidney
disease slow him down. Diagnosed with a rare form of kidney
disease 10 years ago, and on dialysis for six, Claude says his
experience on dialysis has been positive. “I felt better right away. Dialysis
isn’t the end, it’s the beginning.”
He vividly remembers being diagnosed: “You think your life is over. I was
moved seeing a little girl on dialysis in those first days, and I thought to
myself, if this little girl can do it, I can too.”
Claude does hemodialysis at the hospital four hours a day, three times a
week, and has found ways to make it work. “I travel a lot for pleasure and
work, and have dialyzed in over eight countries. I used to feel faint getting
my blood taken; now I put my own needles in. And I arrange for dialysis
wherever I go – Barbados, Mexico, Italy – there’s nothing holding you back
other than finding a suitable place and making the arrangements.” He’s
even thinking of writing a guide for people who travel on dialysis.
“(Dialysis) doesn’t stop you. You can choose to be limited or you can
choose not to be; I chose the latter.”
Claude, who has been recognized five years running as one of Canada’s
best tax lawyers by The Best Lawyers in Canada, is often asked to speak
to new patients. He is always surprised by their lack of awareness about
kidney disease and the information overload they experience when first
diagnosed – especially concerning the kidney diet. He often relates his
cauliflower story.
DANN Y L AV Y
“When you’re trying to figure out what you can eat, you look at these charts
they give you with pictures of vegetables – green being good, yellow not so
good, red is bad. I was always eating cauliflower, which was supposed to be
good, but my potassium was really high. I mentioned I was eating cauliflower
and then learned it had to be cooked. I said, ‘well your chart doesn’t say
cooked, it just shows a green cauliflower.’ Here I was eating cauliflower with no
idea I was heading for a heart attack.”
Even though he sees opportunities for improvement, including shorter
dialysis runs, and better transplant protocols, Claude says, “Dialysis hasn’t
stopped me from doing anything. Kidney disease is not the end of your life.
It is what you make it. You can choose to live a full life with kidney disease. I
hope I’m proof of that.”
His words of hope and caution remain. “Ce n’est pas la fin. Dialysis is not
the end. And remember to boil your cauliflower.”
Postscript: Just two months after this interview, Claude Jodoin received
a transplant. He is now embarking on yet another new beginning.
41
ACHIEVERS
HOWARD SILVERMAN
Secrets to Success
W
hen successful Montreal businessman
Howard Silverman crash-started on dialysis in
2008, it really shook him. “For the first months of
my dialysis experience I had these tubes coming out of my
neck and I looked like Frankenstein,” he remembers.
The President and CEO of The CAI Global Group makes light
of it now, but it wasn’t funny at the time. He’d lived with
diabetes for 35 years and he knew kidney failure could
result, but Howard admits he was in denial. “I had just been
to pre-dialysis clinic, and was admitted to emergency.
Fortunately dialysis was there for me, or I wouldn’t be
here,” he says.
Howard struggled on in-centre hemodialysis. “You come off
the dialysis machine so exhausted. I needed a driver to take
me to and from dialysis. Yet when I got home, I couldn’t sleep.
Sitting for five hours in a chair is an awfully long time, an
eternity. The last half hour was always the worst.”
A new day dawned when he began home hemodialysis
in 2011. “Dialysis at home gave me a new life,” he says.
“Instead of going to hospital and being restricted in terms
of my work hours, I get on the machine at 10:30 p.m., wake
up at 5:30 or 6 a.m. after dialysis and start my day. I eat and
drink what I want. It’s almost like having your kidneys.”
Once headlined as “Mr. Montreal” on the front page of the
business section of the Montreal Gazette, Howard remains
a role model in the business world and, also , in how he’s
learned to thrive on nocturnal home hemodialysis. “The
most important thing I’ve learned is that by being positive
I not only help myself but also my family – because your
family suffers along with you. When you live a positive,
productive life, your family benefits too.”
DANNY L AV Y
It’s About Attitude
D
anny Lavy, President of Elite Group and Montreal
landlord, was diagnosed with kidney disease more
than 22 years ago, but says he doesn’t see it as a
disease. “It’s something that happened. It’s behind me. If
anything, it’s been a positive and a plus. It has helped me
appreciate life more.”
After his kidneys failed, Danny received a kidney donation
from his wife at the Royal Victoria Hospital in Montreal.
Making a planned gift to
The Kidney Foundation of Canada
is a way to make an especially
meaningful gift with lasting impact.
“We simply have to ensure that kidney
advances continue. That is why I have included
The Kidney Foundation of Canada in my will.”
John B. Dossetor, OC, BM BCh (Oxon:), FRCPC, Ph D. (McGill), Professor Emeritus
(Medicine/Bioethics, U/Alberta) and Founding member of
The Kidney Foundation’s Legacy Giving Society
If you would like to find out more about making a gift in your will,
please call 1-800-387-4474 x4987
or visit www.kidney.ca/planned-giving
42
“I just enjoy my life and don’t think about the downturns.
I think positively all the time. I don’t think about anything
negative. I was always like that. I just go full force ahead. The
present is a present – it’s a gift. I honestly think people just
need to have a great attitude. Just don’t let anything get
in your way. Are you going to sit around and feel sorry for
yourself – who has time for that?”
Danny believes more public awareness about organ donation
is critically needed to drive up transplantation rates.
He points out proudly that his wife, Susan recently ran the
Paris Marathon – that’s 26.2 miles. “She gave me a kidney.
She has gone through a lot. She is a real survivor.
“If people understood the operation for a kidney donor takes
only about two hours and that they can then go home a
few days later, knowing they gave a life to someone. It’s an
incredible thing. That should be the ultimate message.”
A MAN OF
ACTION
W. B R E T T W I L S O N
C
anadian entrepreneur and philanthropist,
W. Brett Wilson is the first to admit he doesn’t have
a solid understanding of the full impact of kidney
disease and kidney failure. Even so, he’s had his own serious
health issues and can offer some valuable advice about
surviving a life-threatening illness.
Born and raised in North Battleford, Saskatchewan, the
three-season panelist on CBC’s Dragons’ Den was first
exposed to “the challenges of the kidney,” in 2001.
When he experienced the excruciating side pain of his
first kidney stone, he associated it with the double
radiation treatment he’d undergone that day. He would
experience the same severe pain of a kidney stone in
2004, and again in 2013.
His third kidney stone “had been growing for 4 or 5 years and
was sitting resident in my kidney,” Brett says. The doctors
had to surgically remove the stone before it could fracture or
cause more serious problems. Fortunately, the reoccurrence
of kidney stones has not had a negative impact on his overall
kidney health.
Beyond his experiences with kidney stones, of which he
jokes, “this too shall pass,” Brett’s also a strong advocate of
organ donation.
“It’s shameful people don’t think harder about organ
donation. It may sound provocative, but I don’t think you
should be allowed a driver’s license in Canada unless you’ve
given serious consideration to organ donation,” says Brett.
Unlike many Canadians who support organ donation in
principle but never actually take any concrete action, Brett
is true to his reputation as a man of action. “I have a signed
organ donation card in my wallet and have included organ
donation in my personal directives,” he reveals.
Though he doesn’t consider his experience with kidney
stones life-threatening, his courageous battle with prostate
cancer certainly was. And that experience gave him some
powerful insight on overcoming a major health challenge.
“The first thing I did when I was diagnosed was look at
what I could do over and above what western medicine
could do. I engaged in the genres of humour and
inspiration through books, music and movies to help me
with my mental toughness.
“I always refer people to the movie, Rudy, a movie I watched
every other night during my primary treatment phase. It’s
a story about tenacity – and there’s absolutely nothing like
tenacity to help you get through a tough time.”
The 1993 motion picture “Rudy” was based on the reallife story of Rudy Ruettiger, who despite his small stature
achieved his dream of attending the University of Notre
Dame and playing for the Fighting Irish football team. Rudy
says in the movie, “Well, you know what my dad always said,
‘having dreams is what makes life tolerable.’”
43
DR. EILEEN FREEDM AN AND
TR ACY ARTHURS
“Along with wanting
my friend back at the
cottage, I wanted her
feeling better again.”
P
aediatrician, Eileen Freedman and Tracy Arthurs,
who works as a Program Manager for the Ministry
of Children and Youth Services, were childhood best
friends. Years later when Eileen and Tracy each got married
and had their own children, they vacationed together at
nearby cottages in Parry Sound. Childhood friendships that
last into adulthood are rare enough, but these two women
would become closer than they ever imagined.
In April 1999, on her 40th birthday, doctors found cysts on
Eileen’s kidneys. She had had no symptoms of kidney disease,
and no one in her family had known the disease. Yet the
prognosis was clear: Eileen had polycystic kidney disease.
Ten years later, after a decade of reasonably good health and
maintaining the belief that kidney failure was still decades
away, doctors told Eileen that dialysis was imminent and
that she should start looking for a kidney donor.
“Several family members and friends were willing to be
tested to be a kidney donor for me. But when push came
to shove, I discovered finding someone who was willing to
donate and also healthy enough to be considered a living
donor is not that easy.”
When Tracy reconnected with her friend at the cottage that
summer, she was surprised at how sick Eileen looked and
had no idea several of Eileen’s family members had already
been tested and declined as possible kidney donors.
Tracy knew she was the same blood type as Eileen, and as it
became clear dialysis was near, she called Eileen and said,
44
“Let’s just go do it.”
At the end of three days of comprehensive testing, Tracy
was in shock when the nurse told her she was an A blood
type, not an O as she had thought, and that she could not be
a donor for Eileen. “But this is not necessarily the end of the
road,” the nurse told her. That’s when Tracy learned about
The Paired Donor Exchange Program, a program that brings
donor and recipient pairs who don’t match into a Canadawide pool of un-matching donor-recipient pairs to form a
chain of matches.
The pair entered the program, and Eileen started dialysis
shortly after. She found the transition to dialysis difficult.
“I am a physician,” says Eileen, “I know kidney disease,
supposedly, but I really had no concept of it, no idea you
needed two 15 gage needles. I was overwhelmed by how
little I understood about kidney disease and dialysis – how
you feel on dialysis. It is not a cure. The public perception of
dialysis is so wrong.”
Eileen found ways to cope despite her rough start, including
nocturnal dialysis, which allowed her to work during the day.
She also reduced her work week to four days. “Dialysis isn’t
the end of your life. You can keep doing what you want to do.
You learn to adjust your life,” Eileen says.
Eileen would be on dialysis for over two years before she
got the call telling her the transplant was arranged. But just
five days later, the friends were crushed when they were
told the chain had been broken. “I cried,” Tracy said, “it was
When asked why she did it, Tracy says simply, “Along with
wanting my friend back at the cottage, I wanted her feeling
better again.” Tracy doesn’t want any attention as a kidney
donor, but does feel ‘an obligation’ to share her experience and
tell others about the Paired Donor Exchange Program.
absolutely heartbreaking.”
The friends braced for another long wait, but fortunately,
they only had to wait two months before they received
another call saying the chain was repaired. The surgeries
were booked shortly after that: Eileen’s for March 7 and
Tracy’s for March 11.
“I think about the Good Samaritan all the time. What she did to
make the chain possible,” Tracy says.
Eileen explains how the chain worked, “The six-person
chain started with a woman whose husband had passed
away. Tracy and I call her the “Good Samaritan”. The Good
Samaritan donated her kidney to a woman whose husband
gave his kidney to me. Tracy gave her kidney to a person at
the top of the deceased donor list.”
The friends both wish they’d known the post-surgery signs
of a kidney donor at the time of their surgeries. If only they’d
watched for that woman limping down the hall with the little
pillow pushed tight against her lower abdomen. How they
would have thanked her.
DR. A MIT GARG
“If I had a family
member with kidney
disease, I would consider
kidney donation.”
D
r. Amit Garg is one of Canada’s foremost researchers
in the area of living kidney donation. The Medical
Director for the Living Donor Program in London,
Ontario has helped develop guidelines for living donor
programs in 12 cities across Canada.
“We know living kidney donation has a significant survival
advantage for the recipient.” Dr. Garg says, including shorter
pre-transplant wait period, more controls around the surgery
and better outcomes for the recipient.
But what are the risks for kidney donors? Dr. Garg
responds, “Donating a kidney is a low-risk surgery which
compares to having elective gallbladder surgery. The risk of
death is rare – three per 10,000 surgeries. Most donors are
back to work in 4-6 weeks,” he says.
The evaluation process kidney donors go through has its
own pros and cons. “Something could be discovered during
testing that could impact your future insurability – we tell
donors to have their insurance in place before they start
testing. Of course, the positive side of uncovering a health
problem is that it can be treated much earlier,” he says.
There can also be financial costs related to time off work or
travel, but these costs are often picked up by the transplant
program, the hospital or The Kidney Foundation.
(see www.kidney.ca/financial-assistance)
Dr. Garg notes that though kidney transplant lists are growing,
deceased donor transplant rates have stagnated – and living
donation is helping fill that gap. In fact, he says, “There’s been
a marked increase in living kidney donation. According to
the Canadian Institute for Health Information (CIHI) Report
released in March 2013, there has been a 114% increase in
non-related living donors in Canada since 2003. We are also
seeing more altruistic kidney donors coming forward who
don’t have a specific person to donate to, but want to help
society,” he notes.
Based on the cumulative knowledge gathered so far, Dr. Garg
says, “If I had a family member with kidney disease, I would
consider kidney donation.”
45
GR AEME CASWELL
Making A Difference
“I am not squandering the life that
was given to me.”
S
econd-year student at Western University, Graeme Caswell, is an
uncommonly dedicated young man who is driven by a powerful desire
to make a difference with his life.
Shortly after starting Grade 10, Graeme became suddenly ill with what he
learned was kidney failure. He received a transplant from his mother Lisa,
but that kidney started to fail too. Graeme’s doctors discovered that he has a
rare condition in which the liver fails to metabolize certain toxins, so that they
eventually build up and destroy other vital organs. A liver transplant was the
cure needed.
So Graeme went on the transplant list for a double transplant. This time he
needed both a kidney and liver transplant. During this time he did hemodialysis
overnight at home. “I never really felt overwhelmed by dialysis, but I think my
parents did.”
“ What’s really needed is
a fix for the system of
organ transplantation
in Canada.”
Graeme’s mom, Lisa, who is Vice-President at an independent investment
firm in Toronto, says she “is
incredibly grateful for the gift
that Graeme received. But I was
surprised and disappointed to
learn how long an adult must
wait for a deceased donor
transplant. The reasons for long
transplant lists in Canada are
Proud to support
incomprehensible.
“We already know raising
awareness for organ donation
Lisa Caswell
is only a part of the solution,”
she says. “What’s really needed
is a fix for the system of organ transplantation in Canada. We don’t need to
invent or discover anything new – the necessary resources already exist.
There are many people and organizations that really care about making the
necessary changes, but so far the proper amount of money, business savvy
and commitment has not been applied to the problem. We need to get the
required incentives in place. We even have a road map – Canadian Blood
Services’ Call to Action, www.kidney.ca/Call-to-Action.
For his part, Graeme wants his donor’s family to know: “I’m not squandering the
life that was given to me. I’m making a difference, I’m doing presentations about
organ donation awareness, I’m being a good student and all that kind of stuff,
exercising and taking care of my body. I’m obviously so grateful. It’s amazing
when you think about it. I’m an 18-year-old guy and my life was saved because
of a decision this person made.”
46
The Kidney Foundation
of Canada and their
contributions to kidney
research and awareness.
A Family
Achievement
“ My father was a very strong
and determined man, with a
tremendous will to live.”
M ARGARET CASSON
M
argaret Casson’s father, celebrated Group of Seven
painter A.J. Casson, was diagnosed with kidney failure
at the age of 88. While some people his age may not
have opted to extend their life with dialysis, Margaret says
her father was a very strong and determined man, with a
tremendous will to live. He forged ahead on dialysis and lived
another six years. “And it was very much worth it,” says the
artist’s only child, without hesitation.
A.J. Casson didn’t necessarily have an easy time of it. Not
only was he elderly, but he also lived alone (his wife was in
a nursing home with Alzheimer’s disease), and his eyesight
and hearing were failing. Her father was exhausted before and
after dialysis, and as someone with a great love of food, he
was especially frustrated by the rigidity of the kidney diet.
Helping her father through these years became a real family
affair. Margaret’s supportive
husband, by then retired, did
most of the driving to and from
appointments (which began at
7 a.m.) and Margaret did most of
her father’s shopping.
Margaret feels the gains of those
extra six years were as much a
family achievement as they were
a family responsibility.
She sums it up this way: “My
father endured kidney disease
and grueling dialysis treatment twice a week from the age
of 88 to almost 94. If you were to ask me, ‘Were the extra
six years worth it?’ – I believe my father would answer
with a resounding ‘Yes.’ He saw both his granddaughters
married and his first great-grandchild born over that time.
“He also lived to enjoy a performance of the Toronto Symphony
Orchestra as well as a performance at the new Roy Thompson
Hall. He spent many congenial evenings with friends, attended
a Group of Seven gala, and received the Order of Ontario during
those last six years.”
Margaret urges older patients and their families not to rule out
dialysis: “I’ve been involved with The Kidney Foundation for a
long time and I know the kind of research that is going on. You
don’t know if they are on the cusp of a new discovery. Kidney
disease patients have good cause to hope for the future.”
Painter, artist, and national
treasure A.J. Casson passed
away in 1992 at age 93. His
life – his family’s lives – and
ours – are richer for those extra
six years.
A.J. Casson (1898 - 1992)
White Pine c. 1957
oil on canvas
76 x 101.3 cm
Gift of the Founders, Robert and Signe McMichael
McMichael Canadian Art Collection
1966.16.119
47
“I didn’t want to be
known as
‘the kidney guy’.”
GARRY KELLER
48
Reluctant Kidney Guy
A
young hardworking political staffer in Ottawa,
Garry Keller found himself diagnosed at age 28 with
kidney failure. From 2005 to 2012, the year he had a
successful kidney transplant, Garry advanced by merit of an
enduring work ethic, irrepressible positive attitude and an
unrelenting regime of peritoneal dialysis treatment for nine
hours every night. After mounting a wide-reaching campaign
to find a kidney donor, Keller did what he had to, and became,
however reluctantly, the ‘kidney guy’.
In 2005, after rapid weight loss, comments he “was looking
kind of green” and a near collapse in the shower, he saw a
doctor. Tests confirmed it was kidney failure, and he was
down to 6% kidney function. (Anything below 15%, without
proper treatment, puts your life at risk.) While the source of
the damage is not certain, it’s suspected to be frequent bouts
of strep throat when he was young.
He had to dialyze within 48 hours, and chose the peritoneal
treatment option. He felt it could work for him with his hectic
travel schedule, and he was trained on it in a day and a half.
Over the seven years he was on dialysis, Garry was Chief of
Staff to the Minister of Foreign Affairs (his current position),
Chief of Staff to the Government House Leader, Chief of
Staff to the Chief Government Whip, Executive Director
of the Conservative Party Research Bureau, Director of
Communications to the Minister of the Environment, and
Director of Parliamentary Affairs to the President of the
Treasury Board. “I had no time to think about the dialysis side
of things. It was a means to an end.”
A “really positive attitude” was key to getting through this
rough period. “I had my down moments,” says Keller. “But I
didn’t let them get to me. The possibility of a transplant was
the light at the end of the tunnel.”
For Garry, with his less common B+ blood type (shared by
less than 10 percent of the population), it would be a longer
than normal route to the transplant at the end of the
tunnel. And he would write a new chapter on how to get
there. “Around 2010, I was told I wouldn’t be able to stay
on peritoneal dialysis: it was wearing out my peritoneum
(membrane lining the abdominal cavity), and I needed to
start looking for an organ donor”.
“My wife and I decided that I should go public with my search
for a donor. But we were concerned that explaining the
number of steps involved with being a kidney donor might
discourage people. We knew we needed to do part of the leg
work and thought, what if we bring a blood clinic to Parliament
Hill to do the testing?
“Minister John Baird was kind enough to host an information
session on Parliament Hill which allowed people to learn
about the process and to come forward to get tested if they
wanted.” House Speaker Andrew Scheer’s lounge became the
test centre.
The result: “I’d had eight people in the previous 5 or 6 years
come forward to be tested. Now I had 58 in one day, over a
two-hour period.”
A donor did emerge from the attention generated by the
testing clinic: someone, as it happened, who was aware of
Garry’s situation but didn’t know it had become so serious.
Garry’s transplant happened on June 7, 2012, a date which
he now calls his “new birthday.”
While Edmonton-born Garry has a can-do mindset, his
trailblazing path to success hasn’t been without hurdles. He
mentions the concerns some people expressed about doing
the testing clinic.
The bottom line, according to Garry: “You’ve got to be your
own best advocate. No one’s going to do it for you. You’ve got
to do it, full stop.”
He urges people not to be shy about telling their story. For
him, one of the most important unexpected benefits of going
public was that “it started a debate on organ donation in
the House of Commons. It raised awareness.” And it made a
lasting impression on Kitchener MP Harold Albrecht.
In the end, Garry credits kidney patients who came
forward with their stories before him as helping him
navigate his own kidney journey with greater strength
and enthusiasm.
“I just said to myself, ‘let’s get
this done because there’s a whole
life out there waiting for you.’”
49
Mom’s Beautiful Heart
B
eyond the House
of Commons
debate about organ
donation, Garry Keller’s
act of going public with
his story in 2011 had
other unanticipated
effects: it also prompted
Kitchener MP Harold
Albrecht to come forward
with the story of his wife
Betty’s life and legacy.
Betty collapsed suddenly,
while she and Harold
Betty Albrecht
watched the 2011
election together. She died a few days later in hospital.
Harold says, “My children and I were approached sensitively
and compassionately at the hospital about donating Betty’s
organs. And after a short conversation together, we agreed
this would be in keeping with her wishes.”
In addition to his own faith, supporting Garry and being
involved in the House of Commons debate helped
Albrecht in his own healing process.
“To know five other people continue to enjoy life
because of Betty helped remove some of the edge of
separation and loss. It didn’t take away the pain, but it
definitely helped.”
Since Betty’s death, hearing the stories of the many
transplant recipients he has met has reinforced that he
made the right decision.
He will never forget the night in intensive care after
doctors had checked if her organs were healthy enough
to be transplanted. “‘Your mom’s heart is beautiful,’ the
doctor told us. At that, we cried and laughed, thinking –
‘if you only knew how beautiful it was.’”
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www.hubinternational.ca
Remember How Far We’ve Come
F
ormer school teacher, Marcia Bell was only 15 when she
learned she had kidney disease in 1955. “Those were
the bad old days, when there was no dialysis or organ
transplantation,” she says.
Doctors told Marcia she had a “horseshoe” kidney which
required three serious surgeries over that year. They
managed to retain part of one kidney but did tell her that it
was just a matter of time before her kidney failed. While her
horseshoe kidney didn’t bring much good luck, Marcia would
prove to have an uncanny ability to beat the odds throughout
her journey with kidney disease.
Almost three decades would pass before Marcia would need
to start dialysis, which she admits was one of the biggest
shocks of her life. “Even though I had known for a long time I
would eventually need dialysis, and I thought I was prepared,
going on dialysis was overwhelming.”
The former National President of The Kidney Foundation of
Canada (1995-97) says she really had
to work at shifting her mindset in
order to cope. “I used to tell other
kidney patients, ‘the day your life
changes is the day your mindset
changes from ‘I can’t do these
things’ to ‘these are the things I can
do’. The minute
your attitude
changes,
your whole
life changes
because
you realize
there are a lot of things you can do.”
By the time Marcia went on dialysis, she and husband Larry had
accepted the fact that she might not get a transplant. “At that
time in B.C., there were only about 35 kidney transplants done
each year, and the cut-off age for getting a transplant was 50.
I was already 44,” she says.
But Marcia was successfully transplanted in 1987 and doctors
told her the odds were her new kidney would last about nine
years. Twenty-six years after her transplant, Marcia considers
“every year a bonus”.
Larry, became involved with BC Transplant Society as a board
member and accompanied his wife every step of the way. He
has strong feelings about the need to improve Canada’s organ
donation and transplantation system. “Today there is a more
urgent need than ever to provide more transplants,” he says.
“I think if you’re willing to be part of a society that offers you
a transplant if you need one, you have a societal obligation to
donate to someone else if you are able.”
Married for over 50 years, the couple agrees there’s still a lot
that could be done to improve transplantation rates as well as
quality of life for dialysis patients. “It’s understandable when
you first go on dialysis,” Marcia says, “to worry about the long
road ahead, and sometimes it doesn’t look good.
“But, when I think about how far we still need to go, I
think about how far we’ve come. Remember, when I was
diagnosed almost 60 years ago, everyone with kidney
failure died. The Kidney Foundation has contributed over
$110 million to advance kidney disease research, which
has improved things dramatically. Yes, things could always
be better, research could move faster, for sure. But just
remember how far we have come.”
DID YOU KNOW?
The Kidney Foundation launched a new online
social network where people in the community
can connect, exchange and support each
other. Visit KidneyConnect.ca
MARCIA & LARRY BELL
51
“Patients
deserve even
better therapies.”
DR. BILL CL ARK
An inside look at what drives one of
Canada’s foremost kidney researchers
L
ondon, Ontario nephrologist Dr. William (Bill) Clark has
an almost encyclopedic knowledge of how far his field
has come over the course of his 38-year career. And it’s
been a dynamic one, which included leading the landmark
study of Walkerton’s tainted water tragedy that linked E. coli
poisoning to kidney disease.
Reflecting back, Dr Clark says, “I’ve had the opportunity
to treat patients with very different problems, patients
who I must say are often very brave and deserve even
Proud to support The Kidney Foundation of Canada.
52
better therapies. I’ve had the opportunity to run a research
program, and to teach thousands of undergraduate students
and post-graduate students. It has been, and still is, an
exciting challenge. I can honestly say I’ve never been bored a
day in my life.”
He notes, “Things have changed quite a bit since I first
began my studies. Everything has improved. When I began
nephrology, the kidney transplantation success rate was
about 50%, now it’s almost 95%. We can now treat rare, as
well as rapid and progressive, forms of kidney disease that
were previously untreatable. The success of preventive
approaches to chronic kidney disease is resulting in a
reduction in the growth rate of end-stage kidney disease.
This is largely due to research by several investigators,
many funded by The Kidney Foundation here in Canada.
“What I’m most happy about kidney replacement therapy
is that for patients where transplantation is not an option,
more choices are available about which other modalities
of therapy fit their lifestyle best. In the early days, we only
offered hemodialysis (HD) or ambulatory peritoneal dialysis
(APD). Now there’s home nocturnal PD via a cycler or home
ambulatory PD, nocturnal HD, nocturnal home HD, in-centre
short HD, in-centre HD, and satellite HD.”
Beyond ensuring the wide spectrum of modality choice is
available to all patients, as well as “optimizing of the delivery
of preventative therapies,” Dr. Clark believes the next frontier
in kidney research is “the development of new strategies to
prevent kidney disease from progressing– especially related
to the impact of aging on kidney function.
“Everyone begins to lose a small amount of kidney function
each year after the age of 20,” he says. “If you can delay the
impact of aging on kidney function, you could reduce the
number of patients requiring renal replacement therapy by
as much as 50-60% over the next ten years.”
Dr. Clark, who co- chairs The Kidney Foundation’s Research
Council, feels an enormous impact would result from the
development of “a permanent framework for running
national randomized controlled trials to explore better
strategies to prevent and slow the progression of kidney
disease. These platforms provide a perfect opportunity
for a collaborative interaction between investigators,
government, research granting agencies and industry
to hasten the too lengthy process of discovery for
better treatments.
“I think the existence of such a platform, where researchers
could compete for access through a peer review process,
would be a transformational research achievement. It would
be a major step forward in improving the lives of people
suffering from chronic kidney disease.”
Of his involvement with The Kidney Foundation’s National
Research Program, Dr. Clark says the Foundation’s
research model is an excellent one. “Researchers compete
with their peers for funding to do original research they
are driving. So the program funds the best researchers
doing the best and often most innovative research. Really
innovative research often but not always requires time and
a certain distance to achieve a major breakthrough.
Hence the need for more funding for organizations like
The Kidney Foundation of Canada.”
Alexion is a global biopharmaceutical
company focused on developing and
delivering life-transforming therapies
for patients with severe and lifethreatening ultra-rare disorders.
53
HARRISON OSBORNE
“What’s been hard for us is
that no one knows about
this disease. We’ve had
to educate ourselves, our
family and our friends.
It kills more people than
prostate cancer and breast
cancer combined. And still
no one knows.”
54
Hope for
Harrison
H
arrison Osborne’s parents,
Jarrett and Angie, both
teachers, knew before their
second son was born that he had
polycystic kidney disease. An
ultrasound revealed his kidneys were
an alarming stark “white”. Ironically,
Harrison was born on March 8, 2012,
World Kidney Day.
“It’s the hidden disease. You’d never
know. He’s the healthiest looking kid
I’ve ever seen,” says his dad.
Harrison is tested regularly. “He
continues to defy all expectations,”
says Jarrett. “But it’s not like the
problem has gone away. His kidneys
are the size of that of a 10-year-old.
His cysts are getting bigger and 50 %
of his right kidney is blocked.”
Though the young parents try to
prepare themselves for the fact that
Harrison’s kidneys will fail someday,
they’re told neither dialysis nor
transplant is in his immediate future,
partly because they’re doing so much
to keep his condition stable.
Take, for example, Angie’s red binder:
“Harrison was so upset at his last
appointment we had to skip a lot of
tests. That’s why I have my red binder.
The doctors laugh at me. It’s filled with
every single test result from day one.
It’s all there. The doctor and I will be
talking, and I’ll say, but a few months
ago, you said he had 4 cysts, why are
there 6 now? And then we’ll talk more
about what’s going on.”
They’ve also upgraded the water
quality in their home so it’s on par
with a dialysis unit. Angie prepares all
his food, using organics and avoiding
salt, and they keep his blood pressure
stable by keeping his schedule as
consistent as possible.
Before Harrison was diagnosed, the
couple knew nothing about kidney
disease. “For a long time,” Jarrett
admits, “I kept thinking Harrison
would get better, possibly grow out of
it, or maybe get a transplant and be
cured. I was quickly corrected by the
professionals – that’s not how it goes.
That was a shock to my optimism. It
still doesn’t make a lot of sense that
there can’t be a fix to this yet.”
Angie’s found strength closer to home by
looking for support groups and opening
up about her worries and her fears.
“What’s been hard for us is that no one
knows about this disease. We’ve had to
educate ourselves, our family and our
friends. It kills more people than prostate
cancer and breast cancer combined, and
still no one knows,” Jarrett says. “But it
didn’t break us. It made us stronger and
we were already strong.”
Jarrett sums it up this way: “Harrison is
in a position to make a real difference.
Look at the education he’s going to bring
people. He’s going to change the face of
this disease. He will do that. He has too.”
Angie’s first questions were, “Will
he have a normal childhood? Will he
go to school; will he be like the other
kids? You want your child to fit in with
everybody else.”
With more questions than answers,
Jarrett derives strength by working
in his own way to bring attention to
the disease. “My hope and inspiration
is my son,” he says, “so I’m using
what I am passionate about, art, to
raise education and awareness.”
His concept is “POP Remedy” a
comic strip syndicate that merges
traditional print syndication with web
comics to create and distribute comic
strips to new readers. Proceeds from
sales go back to support charity.
(See www.popremedy.com)
The most recent statistics show that
1 in 10 Canadians has kidney disease
and millions more are at risk.
Are you at risk?
Find out. Take the Online Risk
Assessment.
www.kidney.ca/risk
The online risk assessment tool was made
possible through generous support from
55
T W O K ID S
T W O TR A NSP L A N T S
Together They Made It Through
T
he Bouskill family – Dale, Deb, Stephanie
and Blair – made it through a double crisis
most families never have to experience
once, let alone twice.
With few warning signs, Stephanie, aged 17, was
diagnosed with kidney failure in July 2006. She
started hemodialysis immediately and then
switched to peritoneal dialysis before going back
to school. She remembers being in the hospital,
“I was trying to comprehend it all. There were 8 to
10 doctors in a circle talking around me. The whole
process was really a foreign world for all of us.”
Steph’s parents,
Dale and Deb,
were tested
immediately as
possible donors,
and both were a
match. The family
decided that
Dale would be
Steph’s donor.
Her transplant
took place just
six months after she started dialysis on
January 31, 2007.
“The kids made it
so much easier for
us. Their attitudes,
courage and inner
strength came out.
They taught us
a lot.”
Almost two years to the day after Steph’s
diagnosis, younger brother Blair, then aged
17, was also diagnosed with kidney failure
and needed emergency dialysis. Blair says his
sister was his inspiration. “When I went into the
hospital, Steph gave me all these pointers. It
was a lot easier having her knowledge,” he says.
Dale, an executive at Jamieson Laboratories,
says, “It was absolutely unbelievable, reliving
the same thing two years later – an exact
repeat. But we had to get through it. And change.
56
The way life is and the way you think changes
overnight. You are not always strong at the
same time – you feed off each other.”
Deb recalls, “The kids made it so much easier for
us. Their attitudes, courage and inner strength
came out. They taught us a lot.”
This time around, Deb would donate a kidney
to Blair, six months after his diagnosis, on
July 29, 2009. “As a mother, all you want
to do is take their place. So the first time,
when I found out Dale and I were both a
match for Steph, then later, finding out I
was a match for Blair – I don’t know how
long I cried, I was so relieved,” she says.
Now in her mid-twenties, Steph is a
university graduate and just starting
to look for a career in her chosen field
of psychology. Blair has completed a
diploma in theatre production and is
looking to further his art studies with
a goal of becoming a graphic designer.
Both are working hard and saving for
their futures – and both seem wise
beyond their years.
When asked how he thinks his future will
be impacted by having kidney disease and
a transplant, Blair says, “I don’t think my
future will be impacted at all. I have a newfound strength after getting through it. I think
I can do anything.”
Steph echoes her brother’s sentiments,
“Everyone with kidney disease should know
their dreams can come true. I feel that my
transplant has made me stronger, happier and I
see the world with a different set of eyes. I wake
up smiling every day. You never know what will
happen tomorrow but this new kidney has given
me the motivation to do great things.”
T H E B O U S K I L L FA M I LY
57
CL AIRE & CHANTEL L ARGE
58
“There is a light
at the end of the tunnel.
It just takes time.”
LIVING THEIR DREAMS
C
laire Large has accomplished a lot since being
diagnosed with Lupus in 1986, a disease which left
her kidneys, heart and lungs damaged and eventually
led to kidney failure in 2005. She urges others dealing
with kidney failure to set goals and stay focused. And this
remarkable lady seems to have it down to a science.
or psychologically, you are not a suitable candidate for
living donation.”
Claire, who went back to school to finish her BA in Social
Work while she was on dialysis, found strength in setting
goals for herself and in being able to work toward her
dreams of “making a difference in someone’s life. You can’t
let your illness take control of you,” she says. “Once you’re
stable, you know your body and what you can do.”
Claire, of the Saddle Lake First Nation in Alberta, went
on peritoneal dialysis first, then hemodialysis for a total
of eight years before receiving a transplant in 2012. Her
Daughter Chantel, now in her early twenties, has walked
teenage daughter Chantel was her primary caregiver,
a considerable distance down this path with her mom.
providing invaluable physical and moral support, including
Chantel says it was sometimes
driving her back and forth from
hard being her mom’s main
dialysis and helping her with
support, but overall her mom has
the dialysis machine when she
North
America’s
First
been a huge inspiration for her.
dialyzed at home.
“I would get stressed about
Nations’ Communities
In addition to support from her
school and work – but then I
daughter, Claire relied on advice
suffer from kidney disease
would think how she’s doing it
from two older cousins who were
with her illness on top of it –
in much greater proportion
on dialysis before her.
doing her schoolwork while in
than other populations.
Her cousins, who both passed
hospital. One time she suffered a
away while she was on dialysis,
Over 50% of aboriginal
double heart attack, and when I
are very much on her mind when
saw her later in the hospital, she
people are estimated to have
she says, “There needs to be so
was doing her homework.”
kidney disease.
much more education about kidney
The close connection between the
disease and the transplantation
two is something special. In fact,
process in the First Nations
the two will be working on their respective Masters at the
communities. For First Nations people, it seems even harder
same time.
to find a living donor. First Nations people don’t seem to have
as many transplants as others.”
Though the two navigated Claire’s kidney path together,
Chantel recalls aspects of her mom’s struggle that Claire
Claire says, “It’s important the whole family sit with their
doesn’t. Says Chantel: “She was sick all the time, exhausted.
social worker to hear about the transplant process. My
When she was on dialysis she was emotional, sometimes
brother really wanted to be my donor two years before my
very depressed, just not herself. Some days when I came to
kidneys failed, but I wasn’t sure I wanted to take it from
pick her up she would be crying. At one point she told me she
him. By the time we were both comfortable, he had gained
couldn’t do it anymore. I know it was really hard on her but I
weight after knee surgery and become a borderline diabetic.
don’t think she really remembers that part.” Claire admits,
Because of that, he could no longer be a donor and that
“I think I do sometimes forget, perhaps purposefully, about
affected him badly. We just needed more information at an
the suffering I’ve been through.”
earlier point in the process.”
Claire believes another reason it is hard to find a living
donor has to do with the health of potential donors in
their community. “First Nations people have such high
diabetes rates and so many of us are still healing from
residential schools. If you’re not well physically, mentally
Chantel offers this insight to other family members or
caregivers of kidney patients: “Just be patient. It felt like
mom was sick for a really long time; now we can breathe and
take a second to enjoy life. There is a light at the end of the
tunnel. It just takes time.”
59
MA X & TIE DOMI
Disciplined On and Off the Ice
W
hen Phoenix Coyotes’ first round pick, Max Domi,
was diagnosed with diabetes at the age of 12, it
changed his game.
His father, former Toronto Maple Leaf hockey player Tie Domi
says, “Initially it was a shock to the whole family, especially
Max who handled it better than anyone. The shock lasted
only a second because as family we rallied around him to help
him adjust his life. He is a role model for kids with diabetes
by showing them that if you have a dream, you can achieve
anything you want. You just have to manage it properly and
be on top of it and not let your guard down. Max is proof it is
possible because he is living with it every day and living his
dream as a hockey player.”
Mom Leanne explains how it happened: “On the way home from
hockey camp in Michigan, Max was unusually tired and thirsty.
The next day, our family doctor gave Max his first finger prick to
test his blood sugar and promptly told Max he had diabetes.
“Neither Max nor I really understood how that would change
his life but I remember Max’s first question to the doctor was
‘can I still play hockey?’
60
“Then the doctor reminded him of two-time Stanley Cup
winner, Bobby Clarke. The Flin Flon, Manitoba native had
diabetes throughout his fifteen year NHL career. This not
only inspired Max, but eased his concerns.”
Max acknowledges that, “For a guy to live with diabetes
and play in the NHL is one thing. To have done it back then
is even more amazing. It’s definitely pretty cool and I look
up to him and wear number 16 because of it.”
His dad says the family hasn’t worried too much about
the possible consequences of diabetes, which include
increased risk of kidney failure: “Obviously we know the
side effects of diabetes and what happens if you don’t
take care of it, and Max is well aware of those. That’s why
it’s important for him to keep his numbers in line and eat
properly and keep on top of it.”
“In the end, it’s made me a better person,” says Max, “and a
better hockey player – being more disciplined about what I
eat, working out a lot and taking care of my body.”
This story is sponsored by
DR. DAVID CHERNE Y
Diabetes and Kidney Failure
Dr. Cherney is a Clinician Scientist and Assistant Professor of
Medicine at The University of Toronto. His research focuses
on the connection between diabetes and kidney disease and
he holds a KRESCENT-Canadian Diabetes Association Joint
New Investigator Award, funded by The Kidney Foundation of
Canada and the Canadian Diabetes Association.
What’s the connection between kidney disease and
diabetes?
High blood sugars increase levels of harmful hormones
in the kidney. These can lead to increased and unhealthy
levels of protein in the urine and a loss of kidney function.
Diabetes also increases the risk of high blood pressure or
of developing blood vessel disease, both of which further
damage the kidney and also increase the risk of heart attack,
stroke and limb amputations.
kidney damage or being on dialysis is around 10%. The risk
in patients with type 2 diabetes (known as adult onset
diabetes) is similar.
What can people with diabetes do to protect themselves
from kidney failure?
Careful blood sugar control and keeping blood pressure at
a target of approximately 130/80 mm Hg is essential. Avoid
excess weight and high cholesterol. Don’t smoke. Ensure you
are screened for kidney disease and treated, if needed.
What is the nature of your research in this area?
My lab examines the effects of medications that prevent
diabetic kidney damage from starting. For example, we
are looking at the effect of lowering a substance called
“uric acid” on early abnormalities in high blood pressure
and kidney function, and trying to determine how harmful
proteins in urine might identify who is at risk for developing
severe diabetic kidney disease.
If you have diabetes, what is the likelihood you will end up
with kidney failure?
In type 1 diabetes (also known as juvenile diabetes), after
40 years, the risk of having protein loss through the urine
(albuminuria) is around 40% and the risk of significant
DID YOU KNOW?
Diabetes is the leading cause of kidney failure
in new patients. Today, 38% of patients on
dialysis are there because of diabetes.
DOMINION LENDING CENTRES,
CANADA’S #1 MORTGAGE COMPANY,
WISHES TO CONGRATULATE
THE KIDNEY FOUNDATION OF CANADA
ON ITS 50TH ANNIVERSARY!
Thank you for your ongoing support of kidney patients and their
families across the country.
dominionlending.ca
DominionLendingCentresCanada
DLCCanadaInc
Canada’s National Mortgage Company
61
GET THE WORD OUT!
“There is an urgent need to educate Canadians
about organ donation.”
BILL BR ADY
P
opular London, Ontario journalist and radio
broadcaster Bill Brady knows the value of taking
steps to keep your kidneys healthy. He also knows
the importance of spreading the word about what could
happen if you don’t.
Though the former Vice President of the Blackburn Media
Group describes his experience with kidney stones
as “low end of the spectrum” when it comes to
kidney disorders, he realizes kidney stones
can be difficult to manage and could lead to
something worse.
For instance, because he’s had kidney stones,
Bill is twice as likely to develop chronic kidney
disease later in life. Knowing that, there’s
no way he is going to leave his kidney health
to chance. With the help of his nephrologist,
Bill has learned to manage his propensity
for kidney stones by controlling his
diet, drinking lots of water, and
taking medication. He tells
other patients, “You’ve
got to take the initiative
to find out what you
need to know about
your illness and take
responsibility for
your own health.”
As a veteran media
man, Bill knows
the importance
of getting the
word out about
the seriousness
of unchecked
62
kidney problems – he also knows that doing this is a lot
more difficult than it sounds. That’s why he says,
“It’s so important for kidney patients and their families
to speak up.”
To all the patients, volunteers and event organizers
working so hard to raise awareness about kidney disease,
Bill says, “You can be assured that no matter what you do
by way of a public event, the incalculable result is the
number of people who will become educated. You
can be sure somebody out there is hearing about
your message for the first time.”
Because of his experience as co-founder and
first president of Transplant International
(Canada), Bill knows that in addition to raising
awareness about kidney disease, there’s
also an urgent need to educate Canadians
about organ donation. “Agreeing to donate your
organs is an act of great love that could make a
huge difference and save many lives. But it’s
critical your family knows your wishes
should they be faced with making the
decision on your behalf.”
DID YOU KNOW?
People with a history of
kidney stones were twice
as likely to have chronic
kidney disease later in life,
and women under 50 with
a history of kidney stones
were four times more likely
to develop kidney failure.
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Proud to support the
Kidney Foundation of Canada on their 50th Anniversary
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