World Kidney Day 2013 English

The Kidney Foundation of Canada and the Canadian Society of Nephrology are increasing awareness of kidney health, research and hope for those living with kidney disease

INSIDE

What You Need To Know

Inspirational Stories

Game-Changing Research

Risk factors

Living with kidney disease

Canada is leading the way

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ARE YOU

AT RISK FOR A

KIDNEY ATTACK? Did you know that kidney disease is one of the top 10 causes of death in Canada?

Or that people can lose up to 80% of their kidney function, without being aware of it?

If you didn’t know these facts, you are not alone.

have been on the increase. A kidney attack, usually called

The latest Environics survey for The Kidney Foundation of Canada showed that most Canadians don’t even know that the kidney is a vital organ. Yet, if your kidneys shut down, you can die. The survey also revealed that most Canadians don’t realize that the most common, and often preventable, causes of kidney failure are high blood pressure and diabetes.

“acute kidney injury” by health professionals, is most likely to

Kidney disease affects millions of Canadians – maybe even you.

So this World Kidney Day, March 14, we’re inviting you to learn more about your kidneys. Finding out if you are at risk, what you can do if you are, or how you can prevent kidney disease onset or progression are all important personal action steps.

website at www.kidney.ca. Don’t wait until it’s too late; get

Lack of knowledge regarding kidney health is one of the many reasons for the annual World Kidney Day held during March, which is Kidney Health Month in Canada. This year’s theme stresses the prevention of abrupt attacks to the kidney, which

disease – or if you are, that you manage the risk as best as

Paul Shay National Executive Director The Kidney Foundation of Canada

affect those hospitalized for cardiovascular events or those whose immune system is compromised. It can put you at risk for developing chronic kidney disease.

So, what can you do? Read this brochure and then, if you have additional questions, visit The Kidney Foundation of Canada informed now. Moreover, take preventive action. Implement some of the kidney health tips outlined on the next page.

We hope you’ll take action. To begin with, we’re encouraging personal action to ensure that you are not at risk for kidney possible. Our organizations will also encourage more global action, to ensure your community will be equipped to keep you healthy when you need it.

Dr. John Gill President Canadian Society of Nephrology

What is kidney disease –

and why should I be concerned?

When your kidney is damaged or functions at a decreased level for at least three months, you have kidney disease. Chronic kidney disease can be divided into five stages, depending on the severity of damage, or the level of decreased function in the kidneys. Kidney disease can also occur as an acute attack – without symptoms or warning signs. The fifth or final stage of chronic kidney disease is known as End-Stage Renal Disease (ESRD) and

KIDNEY

FACTS Your kidneys play an essential and central role in the function of many other organs. They: • help to clear the blood of waste products • maintain the body’s metabolism (by regulating the levels of water and minerals in the body) • produce hormones, such as those that help regulate blood pressure If your kidneys shut down, you could die within days.

refers to the ‘end’ of kidney function, when kidneys are working at less than 10% of their normal capacity. To sustain life at this stage, dialysis or kidney transplantation is required. While both are treatments, neither is a cure.

Dialysis is often extremely stressful, taking an emotional and physical toll on the individual. It is also consistently expensive to the health care system.

An organ transplant often represents the best possible improvement to health and quality of life for many people with kidney failure. Unfortunately, the number of available organs for transplant is limited, and a transplanted organ may not last a lifetime.

HEALTH TIPS Adopting healthy lifestyle choices, such as a balanced diet, regular exercise, eliminating smoking and consuming alcohol in moderation, play a significant role in maintaining kidney health and preventing disease development.

Managing other conditions that may lead to kidney disease, such as having your blood pressure monitored and taking medications as prescribed, will also go a long way towards keeping your kidneys healthy.

When kidney disease cannot be prevented, it needs to be managed with proper diet and medications. The Kidney Foundation provides an online diet tool to help people live with kidney disease: www.kidneycommunitykitchen.ca.

If diagnosed early, the progression of kidney disease can often be stopped.

Without medical intervention, such as dialysis or a kidney transplant, a person with kidney failure would die.

An ancient Japanese legend promises that if one folded 1,000 origami cranes, one’s wish would come true.

More recently the origami crane has also become a symbol of hope and healing during challenging times.

FACING THE FACTS • Dialysis treatment costs the Canadian health care system over $70,000 per patient per year.

• The initial, one-year cost of a kidney transplant is nearly $100,000. Follow-up treatment and medication costs drop to under $22,500 per year in subsequent years.

• Over 5 years, in addition to health benefits to the individual, a kidney transplant saves the health care system $200,000 compared to dialysis.

AM I AT

RISK? M

1 IN 10 CANADIANS HAS KIDNEY DISEASE. THE NUMBER OF CANADIANS BEING TREATED FOR KIDNEY FAILURE HAS TRIPLED OVER THE PAST 20 YEARS.

ore than 30% of people with diabetes experience early signs of kidney damage. Diabetes, however, is not

the only risk factor for kidney disease. You’re also at risk if you have high blood pressure, a family member whose kidneys have failed, or are aged 55 years or older. Individuals at risk also include members of certain ethnic groups such as Aboriginal, Hispanic, Black Canadian, Asian and Pacific Islanders.

THE COST OF TREATING KIDNEY DISEASE IN CANADA IS OVER 2 BILLION DOLLARS A YEAR.

Kidney disease can also be caused by an inherited condition like polycystic kidney disease or an infection, or trauma, such as acute kidney injury.

What should I do if I belong to one of the risk groups?

• Discuss your blood pressure target with your doctor, who will recommend therapies, and changes in diet and lifestyle to help you achieve your goal.

• Keep blood sugar levels as close to normal as possible, to minimize your chances of developing diabetic kidney disease.

• Check with your doctor to see if you are at risk for kidney disease. If you are, then he or she will order a urine test to check for protein, and a blood test to check your kidney function. These tests are seen as the most effective ways to detect kidney disease in its earliest stages, when it is more treatable.

• Get tested regularly. This will help you and your doctor to monitor your kidney function, which may change over time.

• Continue to manage your blood sugar and blood pressure carefully, even if your kidneys are healthy.

To find out about targeted kidney health screening events in your region, contact The Kidney Foundation of Canada branch or chapter nearest you. The full contact list is available at www.kidney.ca or by calling 1-800-361-7494.

IF AT RISK: ask your doctor

Kidney Foundation Special Events

Natalie Cole Performs at Kidney Foundation Gala

L

ast October, at a spectacular gala for The Kidney Foundation’s Ontario Branch, Grammy award-winning performer Natalie Cole entertained a sold-out audience. Cole’s presence resonated with the crowd in more ways than one: she is a kidney transplant recipient herself and the author of a riveting autobiography on the subject.

Changing tomorrow

Discoveries that bring a healthier world to life At Astellas, our mission is to bring hope to people fighting diseases all over the world. This commitment is powered by our on-going discovery of new medicines. By nurturing innovation and focusing in areas where the challenges are great, we have created a rich pipeline of products that will address crucial patient needs. © Astellas Pharma US, Inc ASTOOOO6CC February 2013

Lisa Laflamme, Chief Anchor and Senior Editor of CTV National News, emceed this event, entitled “Unforgettable” and paid tribute to the many volunteers who have dedicated their time to raise awareness for The Kidney Foundation. Laflamme also emphasized the need to support people living with kidney disease and spoke of the research needed to improve treatment options.

Special events, from galas to health screenings and symposiums, are an integral part of The Kidney Foundation’s outreach to a diverse and vast national community affected by kidney disease.

On March 14th, World Kidney Day, and throughout March, which is Kidney Health Month in Canada, a variety of events will highlight the importance of making progress in dealing with kidney disease.

The Kidney Foundation’s Quebec Branch will host health screening events throughout the province; the Atlantic Branch will hold a World Kidney Day Breakfast in Saint John, New Brunswick; while The Kidney Foundation and the Canadian Society of Nephrology will partner to raise awareness and funds for kidney research during three distinct evenings in London, Ontario; Winnipeg and Vancouver. Details on all these activities and many others can be found at www.kidney.ca/2013WorldKidneyDay. To learn more about how you can prevent kidney disease, detect it early, or live as well as possible while exploring treatment options, visit www.kidney.ca. The Kidney Foundation website also provides information on the New Challenge Campaign, intended to raise funds for research, patient programs, community outreach and more: www.newchallengecampaign.ca.

KIDNEY

RESEARCH AN E XCITING FUT URE

When it comes to treating kidney disease, significant advances in research have occurred and more are on the horizon.

identical twins and proved successful. Today research is focused on improving long-term transplant survival, and strategies to expand living and deceased organ donation to meet the urgent need for transplantation.

Future game changers are in laboratories now.

DIALYSIS “Science sometimes feels like it takes a really, really long time,” says Dr. Deborah Zimmerman, clinical investigator at the Ottawa Hospital.

“In 1860, Thomas Graham coined the phrase ‘dialysis,’ but it wasn’t until about 1913 that John Abel and his colleagues were able to conduct dialysis in the first animals... And it wasn’t until 1962, when Drs. Scribner and Quinton in Seattle designed a shunt that created permanent external access to the bloodstream that long-term dialysis became possible.” This new approach meant that there was no longer a need to find a different access point to the bloodstream for each treatment. As a result, life-sustaining dialysis became an option for patients.

TRANSPLANTATION In 1958, Dr. John D. Dossetor, one of the founders of The Kidney Foundation of Canada, coordinated a team at the Royal Victoria Hospital, in Montreal, for the first kidney transplant in the Commonwealth. The transplant was conducted between

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 contact Susan McKenzie at susan.mckenzie@kidney.ca or 1-800-387-4474 x4960 • www.kidney.ca/planned-giving

The next two decades have the potential to transform the treatment of kidney disease.

“Researchers are working on membrane technology and talking about a wearable dialyzer,” says Dr. Zimmerman. “You’d actually be able to wear it and continue to do your everyday activities while you were dialyzing. I believe it will happen during my career.”

Canadian researchers, led by Dr. Jeffrey Medin, at the University Health Network in Toronto, have launched the world’s first gene therapy clinical trial for Fabry disease. This rare genetic disease affects many organ systems. Kidney complications in Fabry Disease are common and serious, often resulting in kidney failure.

Today, advanced technology and modern research practices actively seek patient input and participation, particularly through on-line surveys, focus groups and clinical trials. To help facilitate public access to kidney-related research activities, The Kidney Foundation has added a new section to its website. Find out about opportunities for involvement at www.kidney.ca/surveys.

3 Days 100 KM

K Country to Calgary September 6 - 8, 2013

Join us on an epic journey to fight kidney disease.

Failure is not an option

kidneymarch.ca

“A Donor’s Story”

Hope L STORIES OF

C

raig Dunbar was a fit and active young man when he experienced a kidney attack in 2007. “I sprained my ankle while playing baseball and was given anti-inflammatory medications to help heal quickly. Then, suddenly, my body went into crisis,” he says. Drugs can affect kidney function, especially after a sudden injury or if there is an unidentified predisposition towards kidney illness. Craig later discovered that he had an underlying kidney disease known as IgA nephropathy. “In a matter of days, I was being treated for kidney failure with dialysis. My life has never returned to what it was before.”

Craig does home dialysis six nights a week for nine hours at a time to remove the toxins that accumulate in his blood. This treatment may soon no longer work for him; and a kidney transplant is the option he is hoping for. Friends and family have been tested to see if they can act as living kidney donors, but there have been no successful matches to date. He’s not giving up.

Supporters have set up a “Kidney 4 Craig” Facebook page, using social media to get the word out about his need. He’s hoping an altruistic donor may trigger a transplant chain that sees persons like himself benefiting.

He’s also blogging about his experiences at www.Kidney4craig.com

Craig Dunbar

To find out more about whether you are at risk for a kidney attack, visit www.kidney.ca/acute-kidney-injury

auren Herschel understands how much quality of life – and extra time – means for a family with a critically ill loved one. In her teens, she lost her father after his three-year battle with cancer. So when Lauren discovered Canada’s Living Donor Paired Exchange (LDPE) kidney transplant program, she knew it was something she wanted to participate in, to make a significant difference in someone else’s life.

The LDPE, which operates as a partnership between Canadian Blood Services and transplant programs across the country, facilitates living kidney donations between patients with a willing but incompatible donor and other pairs in the same situation.

Lauren contacted The Kidney Foundation of Canada to ask about joining the registry as a non-directed donor. She was referred to the Living Donor Services Transplant Program in

From the Depths to the Heights News Canada originally published Virginia’s story. As a young child, Virginia Arsenault was often sick in the hospital, waiting for her latest kidney infection to subside, while dreading the one that might follow. “From birth, my right kidney was deformed, severely prone to infections, and progressively failing,” says Arsenault.

“I had always been a dreamer and throughout my childhood and youth, despite my disability, all I ever thought about was scaling the world’s tallest peaks. However, I was afraid that it would be impossible with a failing kidney that was constantly infected.”

By the time Virginia turned 13, her right kidney had failed, and she was relying on her left one to keep her alive. She was in immense pain and her troubled organ needed to be removed. She was able to have the kidney removal operation and went on to live a healthy lifestyle. “I will forever Virginia Arsenault, 2012 be grateful for research that made it possible to help kidney patients like myself,” says Virginia, who now volunteers in the Atlantic Branch of The Kidney Foundation of Canada.

“Today, I am able to live my dream of being a mountaineer. I have travelled to the Himalayas, and saw Mount Everest with my own eyes from the summit of a nearby mountain.”

her region. After undergoing tests to ensure that she was a suitable candidate, she donated her kidney in 2011. And because her altruistic donation was not directed to a specific donor, it could be used to trigger a series of other transplants. Lauren’s donation resulted in four different transplants.

She went back to work after two weeks and has “next to no scars” thanks to the laparoscopic procedure. Since then, Lauren has met many people whose lives are affected by kidney disease through Kidney Foundation initiatives such as Calgary’s 100 km Kidney March.

“Hearing their stories helped me picture the person I had donated my kidney to,” she says, “and how it might have changed his or her life.”

To learn about the Living Donor Paired Exchange program or to learn more about becoming a living donor, visit www.blood.ca/organsandtissues.

Focusing on a better future for children with kidney failure “Kidney failure in children is really a big deal,” says Dr. Susan Samuel, a researcher at the University of Calgary and pediatric nephrologist at Alberta Children’s Hospital. “Adult kidney patients have had an opportunity to grow, have a family, get a job, and survive. For children with kidney failure, many of these opportunities are lost early in life.”

“When we found out that my mom needed dialysis, we were in shock,” says Ike Zhang. “Dialysis is not a short-term thing, and we weren’t prepared.”

Ike Zhang and Linni Xu

W

hen kidney disease strikes one person, it affects their entire family – often their community. Ike Zhang realized this when his mother, Linni Xu, was diagnosed with renal failure in 2003.

Dr. Samuel, a 35-year-old mother of two, has spent her entire professional life working to improve the health and lives of children with kidney disease. She comes from a family that has struggled with kidney disease. “Rare diseases, such as kidney failure in children, are always difficult to study since there aren’t enough patients in one centre to gather scientifically significant results,” she says.

It was a rude awakening for Linni, whose Asian ethnicity placed her at risk for kidney disease and whose job as a computer consultant had her travelling across North America more than 300 days each year.

So, after her training in pediatric nephrology, she earned a master’s degree in clinical epidemiology and completed a research fellowship. She then developed Canada’s first national database of pediatric dialysis and transplant patients – a resource that has made it possible to document long-term outcomes for children with kidney disease and to identify disparities in transplant access based on geography, ethnicity, and socioeconomic status.

Ike’s father found a job that could accommodate his wife’s dialysis schedule and Linni changed jobs so she would not have to travel.

The family decided to pursue home hemodialysis in 2007, which allowed Linni to complete her dialysis treatments with the help of her husband and son. Last September, after waiting more than five years, she received a kidney transplant.

“Every child deserves to have the best opportunity to succeed in life. Kidney disease can be overcome with proper care and attention,” she says.

“At first we reacted to the diagnosis like any family. We were stressed, depressed and emotional,” remembers Ike. “But then we realized it was a situation that we had to deal with. We needed to make dialysis part of our lifestyle.”

After watching his family struggle to cope with his mother’s diagnosis, Ike was inspired to organize a concert to raise awareness and funds for The Kidney Foundation of Canada. This successful event featured members of the Chinese Orchestra and exceeded all expectations.

LIFE CHANGING

Fund. “On my return, I learned that we had raised $250,000,” he says.

With his kidney working well 19 years after the transplant, Michel makes regular visits to dialysis patients in his community.

“I bear the responsibility of giving hope to dialyzed patients and of encouraging them to undergo a kidney transplant, by way of my own testimony,” says the father of seven, and grandfather of 22. “Donating a kidney today is much easier than it used to be for both the donor and the recipient.

The technology for transplant and dialysis is much better.”

T

ransplant recipient Michel Perron is a champion by many standards, but he humbly acknowledges, “I am sure that if I hadn’t received the precious gift of a transplanted kidney, I would have had to stop working and my life would be very different.”

The Quebec businessman, who recently turned Michel Perron 80, began dialysis at Montreal’s Royal Victoria Hospital in 1992. At the time, people over 60 were considered ineligible for a transplant, but with his son’s kidney available, surgeons agreed to perform “the life-changing” procedure.

Michel was back at work eight days later. He celebrated his 62nd birthday and the first anniversary of his transplant by raising a flag for The Kidney Foundation of Canada at the North Pole in 1994.

At his wife’s suggestion, he used the adventure to raise money for the foundation by establishing the Michel Perron Research

Michel Perron will celebrate the 20th anniversary of his transplant in April.

Content for this publication has been jointly provided by The Kidney Foundation of Canada and the Canadian Society of Nephrology.

Thanks to contributors and volunteers who have generously shared their stories and insights.

All rights reserved. Copyright © 2013.

Publisher: Penny Shore, Shore Publishing, pshore@shorepublishing.ca Design & Production: Bravada Communications Inc., bravada-cci.com

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