50 Kidney Stories

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 BublĂŠ

Terry Leon

Annette Verschuren

W. Brett Wilson

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2013-01-31

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Our purpose: Make a difference

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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.

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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

vx130043E Š 2013 Janssen Inc. www.janssen.ca

EDI T OR I A L

SUSAN MCKENZIE

Silver Linings

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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.

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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

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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 • info@kidney.ab.ca • www.kidney.ab.ca

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NEVER GIVE UP,

THAT’S THE NAME OF THE GAME

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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.

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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.

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A LE X

LIFESON

“Finding a cure for kidney failure is the only real answer.”

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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.”

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TURNING LIABILITY INTO ADVANTAGE

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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

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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.”

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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.”

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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.”

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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.”

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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

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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

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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

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MICHAEL BUBLÉ

Asking You to Help Raise Awareness for Kidney Disease

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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

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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.”

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DR. JOHN B. DOSSETOR

“ The outlook for kidney failure has changed from hopeless to hopeful.”

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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

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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

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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

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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

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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

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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.

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“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

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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.”

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Taking On Childhood Kidney Disease

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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.

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CHANGE WAS IN THE AIR How mining CEO Graham Farquharson’s life took a wonderful though unexpected path

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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

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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.”

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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.”

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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.

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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.

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DETERMINATION ISN’ T ALL THAT RUNS IN THE FA MILY

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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.”

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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.

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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.”

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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.’”

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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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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.

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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

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“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.

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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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