Kidney Living - Fall 2019

Living

KIDNEY Fall 2019 Volume 12 • Number 2

www.kidney.ca/ontario

A PUBLICATION OF THE ONTARIO BRANCH

Active Living Helps Mind and Body

contents

FALL 2019

FOUNDATION/FUNDRAISING 3 Reflect and Refocus 8 Amazing Ambassadors 9 Record-breaking Year for Ontario Kidney Walk 21 Community Highlights 23 Calendar of Events PERSONAL STORY/VOLUNTEERS 11 Share Your Burden 15 Finding Your Voice 17 Inspired by Impact

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LIFESTYLE/FOOD & NUTRITION 4 Active Living for Life 5 Moving Forward 6 Do Try This at Home 7 Take Charge 12 I have what? Now what?

18 Kidneys, Beans and Greens 19 Recipe: Curried Chickpea Salad ADVOCACY/WORKING TOGETHER 14 On the Road Again 18 Getting Around MEDICAL RESEARCH 16 Kidney Foundation Deepends Investments in a Key Priority

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Cover: Angie Pestowka Photo credit: Liz Ericson Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses to Trish Reynolds, Communications Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email: ontario@kidney.ca.

Phone: 1-800-387-4474.

©2019 Kidney Living, the contents of which is subject to copyright, is published twice a year.

Reproduction in whole or in part, in written, electronic or any other format, without prior written permission, is strictly prohibited. For more information, contact Trish Reynolds, Editor at trish.reynolds@kidney.ca or 1-800-387-4474 Ext. 4981.

The appearance of advertising in Kidney Living does not imply an endorsement by The Kidney Foundation of Canada, nor guarantee the quality, effectiveness of any products or services.

Editing, design and printing by GEPM Group Inc. www.gepmgroup.com

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EDITORIAL

Reflect and Refocus Looking ahead to 2020

by Trish Reynolds

The Kidney Foundation of Canada, Ontario Branch 2019 - 2020 Board of Directors Craig Kerr, President Richard Bernreiter Charles Cook Chris Costanza Alan Hui Michael Mastrionardi Dr. Norm Muirhead Dr. Sanjay Pandeya Greg Robbins, Past President Mary-Pat Shaw Marlene Smith Sonya Solman Susan Tkachuk Terry Young

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horter days, cooler nights—it’s the time of year when we refocus, set new routines and prepare for winter.

In this issue of Kidney Living we’re highlighting the positive benefits of active living for both pre-dialysis and dialysis patients. The team from the Active Living for Life program have provided some great exercises that can be done at home—no gym membership needed!

Angela, Carol and Ishver share how an active lifestyle has positively benefitted their health, providing some lasting benefits. Speaking of moving, we’re also shining a light on some of our amazing Kidney Walk ambassadors who, at a young age, have shared their personal experience with kidney disease and made an impact in their communities.

It has been an incredibly busy year at The Kidney Foundation. During Kidney Health Month we launched our #SixDegreeChallenge which will return once again next year. Our community came together in record numbers at this year’s Kidney Walk and raised an amazing $960,000+ (see page 9 for highlights). We raised our voices together and affected change when the government announced changes to out of country funding for dialysis treatments (see page 14).

But now is the time to refocus; to look forward with fresh perspective. It is The Kidney Foundation’s time to look to the future with an innovative energy and a passion.

Change is in the air and we’re looking ahead to 2020 with clarity, excited for what the new year will bring.

Together, our collective voice can be stronger as we advocate for equitable, optimal care; as we provide programs that deliver education and comfort in knowing someone is there; and as we invest in world-class research to improve treatments and ultimately, to find a cure. 

Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 www.kidney.ca/ontario

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LIFESTYLE LIFESTYLE

StoryBlocks.com

Active Living for Life Fitness for optimum health

by Kerry Hately, Monika Dylewski and Tara Aune

The Active Living for Life program was originally created to increase the rates of physical activity, physical literacy and capacity in individuals with chronic kidney disease.

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riginally designed as a six-week exercise and education program to be delivered in three cities around the province, the Active Living for Life program now runs solely out of the Chinguacousy Wellness Centre in Brampton. It is free of charge to chronic kidney disease patients and their support person(s). The current Active Living for Life program is a one-hour exercise class that runs three times a week, for 10 weeks, in the both the fall and spring. The current program has grown considerably with the support of the Kazman Foundation for Charitable Giving, in partnership with William Osler Health Systems, Sheridan College, The Kidney Foundation of Canada and lead Registered Kinesiologist, Monika Dylewski.

The Active Living for Life program focuses on balance, stability, flexibility, muscular endurance and strength, and flexibility with the goal of supporting active daily living skills, reducing falls and improving overall quality of life. The program has become a place where patients, their families, student assistances and health professionals gather in a safe, warm and welcoming space to be healthy, positive and learn together.

For more information on the Active Living for Life program contact The Kidney Foundation at 1.800.387.4474. ď Ž www.kidney.ca/ontario

Moving Forward

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LIFESTYLE

Exercise helps Ishver and Carol feel more positive, energetic

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by Heidi Westfield

shver found out his kidney function was dropping just over two years ago. His doctor said his creatinine levels were high. Then in his early 60s, he began an exercise program at a Brampton gym to lose weight and get into better shape. While at the gym, he learned about the Active Living program taking place at the same facility. The exercise program is designed to improve the fitness level and health of people living with kidney disease.

Ishver, who has retired from Magellan Aerospace’s Aviation Department, signed up and attends the classes regularly. He has participated in three 10-week sessions over the past 18 months. Over that time, he has experienced a lot of benefits.

“It has improved my physical abilities. The weakness I used to feel, I don’t feel anymore. My kidney function has improved and my creatinine levels have stabilized,” he says.

“My nephrologist is very happy.”

The personal support and guidance provided by instructors is especially beneficial. Participants learn how to perform the exercises properly, so they don’t strain or hurt themselves. Ishver also believes that the social aspect of the program is incredibly important.

“It makes people with kidney disease understand that they are not the only ones in this situation, and that they are cared for,” he reflects. “I see a lot of disabled people go there and staff provide one-on-one help. It makes you feel like people care about you in this society, and makes you feel valuable.”

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arol is on hemodialysis, and takes par t in the Active Living Program once a week. She finds the exercise classes make a big difference when it comes to her quality of life. The 60-year-old feels stronger and more energetic. Her outlook has also improved.

“I am grateful to the people who started this class. It is a great program that is helping a lot of people,” Carol says. “When you have kidney failure, it is something that nobody wants. Emotionally, I was ready to be in a depressed state, but going to the program helps me and gives me something to look forward to.”

Carol learned she had kidney failure just over two years ago. She was at work on September 7, 2017 when she began feeling very sick. Her husband rushed her to a nearby hospital, where doctors conducted a number of tests. They were astounded with the results.

“I don’t know how you are walking around, because you have no kidney function,” the doctors told her. She was admitted to hospital right away, and put on dialysis.

The diagnosis was difficult to hear, but Carol is moving forward with the help of her husband, children and extended family. She says her faith has also played an important role in helping her adjust.

After losing kidney function, surgeries weakened one of her arms and movements became more difficult. A social worker suggested she take part in the Active Living program in her community. The program is free to participants, who learn how to use proper exercise techniques and workout safely. Organizers also provide information on how physical activity benefits renal health.

Over time, the classes have helped Carol improve her arm strength and range of movement. Another benefit of the weekly activity is the chance spend time with other kidney patients who are living with similar health challenges.

“You can talk to people, and you can hear about their situation,” Carol reflects. “You can share your experiences, and get consolation knowing that you are not the only one going through all of this. I have a better perspective on the whole kidney failure process because I accept it as my new normal. “  Fall 2019 / Kidney Living /

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LIFESTYLE

Do Try This at Home

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Simple exercises to help you build strength to support your everyday living.

by Kerry Hately, Monika Dylewski and Tara Aune Photos by Jamal Bryan

SQUATS u Start in a standing position, push glutes backwards before bending your knees and lower towards the chair. Make sure your knees are over your feet. Touch the chair with glutes and return to standing. NOTE: keep chest up during the exercise and avoid dropping chest forward.

t is always wise to check with your doctor before you start to exercise. Start slowly, breathe throughout each exercises, and if you feel uncomfortable or something hurts, stop and check in with your care team. These exercises can be done for 10 repititions, rest and then repeat.

q WALL PUSH-UPS

Start with arms outstretched, leaning on a wall. While keeping a neutral neck and back, bend elbows to bring chest close to wall and return to starting position. NOTE: Make sure to take a big step away from the wall allowing yourself to be on an angle. t STANDING BIRD DOG

Start in a standing position while holding the back of a chair. Raise straight leg back by squeezing the glutes and keeping your back neutral. NOTE: keep both hips facing forward at all times and avoid twisting the torso.

SEATED RESISTED KNEE RAISE u

q SEATED OBLIQUES

Start seated with hands on opposite knees. Raise one knee at a time while pushing down on knee with opposite hand. NOTE: Maintain bracing throughout the duration.

Sit on edge of chair with back straight.

Begin by raising one knee up off the chair. Twist body to touch the raised knee with the opposite elbow. NOTE: Try bracing at the same time. ď Ž t SINGLE LEG STANCE

Begin in upright standing position, holding a chair at the side. Place one foot on opposite shin with knee pointing forward. Hold for 30 seconds. NOTE: maintain a straight spine and hips throughout and focus on a stationary object ahead to aid in balance.

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COVER STORY

Take Charge It’s worth fighting for

by Angie Pestowka and Trish Reynolds

It was the moment when I found something worth fighting for; a vibrant and flourishing lifestyle. What do you do when medical professionals deem your life expectancy to be less than five years? You turn 45 and share your story of hope to the world.

Photo: LizEricsonPhotography.com

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y name is Angie. I’m a wife and a mother; I work full time, love to exercise and cook; and yes, I live with kidney disease too.

I often say the key to overcoming any health challenge is the marriage of three key components: medical science, mental strength and faith.

In an almost unheard-of turn of events, my doctor discovered polycystic kidney disease (PKD) weeks after my birth. The prognosis was grim, but my parents thankfully refused to believe that my life would be cut short. Visiting the hospital for tests and follow-up became routine. I didn’t feel sick, and I remember it being difficult to stay in the hospital for days at a time surrounded by other kids who weren’t well.

Our family had no history of PKD, so the diagnosis came as quite a surprise.

Generally, PKD is diagnosed only after symptoms appear or when a person presents in kidney failure. PKD causes multiple cysts to form on the kidneys, reducing kidney function substantially. The average kidney is the size of a fist; my kidneys are roughly the size of footballs.

I’ve been able to implement proactive and healthy habits for many years to preserve my kidney function and prolong my life expectancy. I walk, I run, and I love CrossFit. Over the years, I’ve learned that I need to listen to my body.

Exercises are modified to fit my needs and I pay close attention to my blood work. Finding the right balance is key. I modify the exercise and have learned that sometimes even though I might feel great and want to do more, it might not be best for me. Learning to slow down is sometimes a challenge. I’ve been encouraged by my amazing medical team to incorporate mindful activities such as yoga into my routine. Not only does it keep me moving, it also helps reduce stress.

Every six months I visit the Kidney Care Clinic. Not only do I see my nephrologist; I consult with a pharmacist, a renal dietitian and a social worker. They take care of all of me: mind and body. They also offer the “latest and greatest” ways of preserving my remaining kidney function.

I work closely with my dietitian to manage my diet. It’s not always easy and requires constant tweaks and adjustments. In many ways I’m lucky that diet and nutrition are topics of interest to me, so it’s not as overwhelming as it is for some people.

I have previously participated in research studies and will continue to do so as the opportunities arise. Research saves lives. Research gives hope. Research opens the door for opportunities that were previously unthinkable for people like me.

Relying on medical expertise, demonstrating the tenacity to stick with healthy routines, and choosing to be filled with faith and positivity have resulted in improved quality of life for me. I wish the same for all individuals living with kidney disease.  Fall 2019 / Kidney Living /

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FUNDRAISING

Amazing Ambassadors Age is not a barrier on Kidney Walks

by Trish Reynolds

The Kidney Walks are a vibrant reflection of our kidney community.

Filled with laughter, smiles, sometimes a few tears, they are a time when families, friends and the renal community come together in a show of support for Canadians living with kidney disease. q Christopher with his crew at the 2019 Goderich

Kidney Walk Photo credit: John Hilton

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hrough the walks, we meet some amazing individuals. Some take a leadership role as a volunteer, organizing events and teams; others become strong ambassadors for the Foundation, using their voice to raise awareness and educate the public. These two individuals served as ambassadors at their local walk and show that raising your voice for a cause can be done at any age. They stepped up and stepped out to make a difference.

Meet Christopher In 2014, when Christopher was only 10 years old, he was diagnosed with the auto-immune disorder Henoch-Schonlein Purpura (HSP) which can cause chronic kidney disease. After further testing, and another relapse of (HSP), he was diagnosed with kidney disease the following year. He also learned that he was born with only one kidney, making his condition more challenging to treat. But that didn’t stop Christopher!

Christopher has been an amazing ambassador for The Kidney Foundation in the Goderich-Kincardine area. He and his crew are the definition of passion. For the last number of years, Christopher’s Crew have organized the annual walk in Goderich. “I’ve been involved in the Kidney Walk for many years. In 2017, I took an increased role in outreach and advocacy for The Kidney Foundation, including helping to organize our local walk; volunteering at local health fairs and promoting kidney health awareness with local media,” said Christopher.

Over the past five years, Christopher’s Crew have raised more than $50,000 to support research and programs to help those living with kidney disease. Christopher and his crew have launched some special fundraisers to enhance their efforts. They organized an online auction with over 150 amazing contributions from their local business community; they sold pizza kits—selling more than 200 kits in their community; they’ve sold bracelets and water bottles all in an effort to raise money to help The Kidney Foundation fulfil its mission.

Christopher’s dedication and enthusiasm are inspiring.

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FUNDRAISING

p Brennan and his mother, Tina

Meet Brennan At 12 years old, Brennan started to feel a pain he had never felt before. Suspecting it could be his appendix, his parents took him to their family doctor and then on to their local hospital for further assessment.

After a battery of tests, doctors discovered that there was a problem

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with his kidneys. Brennan was referred to a nephrologist in London. It was then that he and his family learned that his kidney was functioning at only 60 percent.

Brennan was diagnosed with Focal Segmental Glomerulosclerosis or FSGS. He now sees his nephrologist every six weeks, and at each visit, the news is much the same: his kidney function has decreased another three to five percent. As of his latest appointment, Brennan’s kidney function was down to a mere 23 percent. The time has come to start the work up for a kidney transplant.

Although he tires easily, Brennan enjoys life, pushing himself to get involved and to savour every moment.

Before his diagnosis, Brennan and his

family had participated in other charitable walks, so when they found out there was a walk that benefits people with kidney disease, they knew they had to be part of it. Together with the whole family—from grandparents to aunts, uncles and cousins—the team took shape and they walked in the London Kidney Walk raising $8,000 this year.

Brennan’s family and friends have been a great support during a challenging time, but according to Brennan, attitude is key: “Stay positive, stick to your diet, rely on family and friends, talk about your feelings and keep doing the things you enjoy.” 

Record-breaking Year for Ontario Kidney Walk he kidney community came out in record numbers and raised a record-break ing $963,000 to invest in high-caliber research and crucial support programs.

“We are truly overwhelmed by the amazing support of our kidney walkers and their many donors” said Craig Kerr, President of the Kidney Foundation’s Ontario Branch. “It is truly inspiring to see so many families, friends and partners in renal care come out and show

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such tremendous support for their loved ones living with kidney disease,” he added.

The walks represent The Kidney Foundation’s largest community fundraising initiative and took place in 35 communities across the province throughout September. Nationally, the walk program has raised over $2 million this year.

The walks would not be possible

without the commitment and dedication of our volunteers, many who take on a leadership role organizing the walks; arranging all the details from start to finish. Thank you to national partner Otsuka Canada Pharmaceutical Inc., national supporter Horizon, provincial media sponsor YESTV, and the many local and regional sponsors who supported the event through sponsorships and gifts in kind.

Turn the page for more photos u

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FUNDRAISING FUNDRAISING

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PERSONAL STORY

Share Your Burden The emotional toll of kidney disease

by Heidi Westfield

Ariel participated in the #SixDegreeChallenge, highlighting the prevalence of kidney disease in Canada by sharing his story along with a photo of himself “throwing The Six” (holding up six fingers).

www.kidney.ca/givingtuesday

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riel Gomez had lived with kidney disease for many years, but in 2014 his condition became more serious. Lab results pointed to a sharp drop in kidney function and his medical team started talking about dialysis. It was a conversation that Ariel was not ready to be part of at that time. His anxiety rose as he tried to block out the realities of his declining health.

“I heard about dialysis but quite frankly I was not interested in knowing the details about it. I was in denial,” Ariel recalls. “I was afraid because I didn’t know what was going to happen. I became depressed, went to appointments alone and kept everything to myself.”

Four million Canadians live with kidney disease. The condition impacts not just a person’s physical health but also impacts their psychological wellbeing. The emotional burden can be overwhelming. It can rip people away from the lives they know, and leave them isolated and scared.

“I am the eldest of four children, and when my father died, I became a father figure and a source of strength to my siblings. I didn’t want them to see the weak side of me,” Ariel admits. “They knew I had kidney problems but I didn’t tell them the seriousness of what I was going through.”

Ariel tried to control the decline in his kidney function, sometimes in alarming ways. At one point, he avoided eating because he feared that the potassium and phosphorous in food would make his condition even worse. As he lost weight and got thinner, his friends wondered what was happening to the strong, vibrant person they knew. Even in the face of their concern, Ariel was “ashamed” to open up: “I didn’t want them to look at me like a different person. I wanted to be treated as normal.”

As his health problems escalated, Ariel realized he couldn’t go on this way. He saw a flyer for a Kidney Foundation Walk and decided to sign up.

It was, he says, a turning point that changed his life and his perspective.

“I got to meet a new set of friends who are in the same situation I am in,” Ariel says. “I felt like I wasn’t alone in this battle, and that I have the support of other people.”

Now a transplant recipient, he continues to volunteer with the Kidney Foundation and take part in its programs. The Foundation’s Peer Support Groups where available, in particular, have helped him navigate the challenges around dialysis and his new life as a transplant recipient.

Ariel advises others with kidney disease not to let anxiety take over their life, and retreat into isolation.

“Reach out to others,” he says. “The Kidney Foundation has a number of support programs. You can have more freedom to express yourself without feeling judged.”  Fall 2019 / Kidney Living /

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LIFESTYLE

I have what? Now what?

Benefits of a patient support group

by Erika Engel

You have been recently diagnosed with chronic kidney disease and all of sudden your perfect life, or near perfect life, comes to a standstill.

With the physician mentioning that you might need to start dialysis in a few weeks or months, you are suddenly feeling rudderless.

Erika Engel is an executive/life coach and therapist who contributes regularly to the Psychonephrology website, a community of nephrology and mental health clinicians, patients, families and caregivers committed to understanding and helping people coping with the psychosocial impact of chronic kidney disease.

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StoryBlocks.com

ith the onset and discovery of any major disease, such as chronic kidney disease, it becomes difficult for you and your family, during this emotionally turbulent period, to comprehend so much information. The definition of normality changes and simple chores become uphill tasks. It’s easy to become overwhelmed in trying to adjust to this new life. Though the healthcare professionals can help you in providing physical comfort, sometimes your emotional needs can end up taking a back seat. Even the wisest person can struggle to find right words when it comes to providing empathy.

“In an ideal world, when we are faced with a new health problem, a clinician is available to sit down and address all our questions and anxieties about the condition and its treatment. This ideal is rarely met in the United States health system. More typically, we’re rushed through doctor visits that fly by too quickly for us to gather our thoughts.” NY Times article Technology, which may have helped in discovering the problem at a much earlier stage, may also complicate the patient-physician connection. As physicians spend more and more time looking at their computer screens, patients may feel reduced to a case number only.

There is no right or wrong way to cope with a chronic illness. Some patients may find comfort in taking some alone time to process the information while others may want to look for some support from others. A patient support group can provide much needed solace during those difficult times. www.kidney.ca/ontario

LIFESTYLE

Benefits of Support Groups • Talking to someone who has already been in your shoes can help you in adjusting to your new life.

• Sharing your experiences with someone who has already been through this is a powerful support.

• It provides a lot of hope hearing and knowing that someone else has struggled with the same issues and now is doing better.

• It helps in better understanding how to cope with the current situation and perhaps begin to find hope again.

Although life may never go back to the way it used to be, peer support can definitely guide you to accept the “new” normal and realize there is a future ahead of you. At the support groups, you can find the atmosphere to share your innermost thoughts, feelings and fears, which you may want to hide from the outside world, which may not understand.

Finding this help also provides support for the caregivers in your life, who realize they are not alone with having to be there for you. And what’s more, even the caregivers can join their own support groups, where they can learn how to provide help while maintaining their own physical and mental health.

Reach of support groups With the advancement of technology, a physical visit is not a necessity. The conversations can take place over the telephone, video conferencing or through online forums such as Kidney Connect [kidneyconnect.ca], which provides wonderful support to the patients and their caregivers. Some of the forums may also have voluntary involvement of a medical professional, thus providing a clarification of medical issues and terminology along with valuable emotional support. You can check with your healthcare profes-

sional for suggestions of any such support group in your vicinity. The support groups can be for general chronic conditions or related to a specific disease.

One caveat, like any other social media platform—these support forums are also not immune to the challenges of invasion of privacy or of providing wrong or misleading information. Nevertheless, the overall structure of these forums is to provide a safe platform for patients who may find all the new information too overwhelming or anxiety provoking.

Though joining a support group does not help you in treating your medical condition, and should also not be substituted for medical advice, you can always be on the lookout for a counselor or a social worker to help you find a peer group to deal with the emotional aspects of your illness. 

Connect with others...

Kidney Connect Peer Support is for people living with - and affected by - kidney disease

Connect with our volunteers in the way that you feel most comfortable: Support Groups By phone In-person Online at kidneyconnect.ca

1.866.390.PEER (7337) www.kidney.ca/ontario

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WORKING PERSONALTOGETHER STORY

On the Road Again Ontario’s kidney community speaks out, funding restored

by Heidi Westfield

Ontario’s kidney community has played a vital role in reversing a funding cut that would have hurt dialysis patients across the province. As a result, in August, 2019 the Ontario government announced it will continue to reimburse a portion of the cost of hemodialysis services delivered outside of Canada.

That means Ontario residents with kidney failure can continue to claim up to $210 CAD for each hemodialysis treatment they receive in other countries. The decision reverses a government funding cut made public in April. Ontario kidney patients were facing the prospect of paying the full cost of hemodialysis treatments they receive while travelling abroad. The price for these treatments can range from $250 US to $650 US (about $330-$850 CAD) per dialysis treatment, depending on where the service is delivered.

The decision to reinstate the OHIP coverage comes after a grassroots effort to bring attention to the negative consequences of the funding cut. This spring, The Kidney Foundation of Canada reached out to all MPPs and other politicians outlining why the reimbursement should remain in place. The Foundation explained that, because chronic kidney disease is a pre-existing condition, to their knowledge, no insurance companies in Ontario will cover the cost of hemodialysis treatments outside the country. Kidney patients already experiencing physical and financial hardships would be left to shoulder another burden.

“Given that a person requiring life-sustaining hemodialysis treatments must receive no less than three hemodialysis treatments per week, the cost of treatment is enormous,” The Kidney Foundation’s letter to MPPs said. “Missing dialysis treatments can cause significant impacts on the overall health stability of an individual, unnecessary hospitalizations and even death.”

Ontario’s kidney community was successful in voicing their concerns and safeguarding valuable health coverage. To everyone who took the time to get involved and share your experiences, you have made an enormous difference. The Kidney Foundation is grateful to each and every one of you. Together, we can shape a better future for Ontarians living with kidney disease. 

StoryBlocks.com

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www.kidney.ca/ontario

PERSONAL STORY

Finding Your Voice Speaking out on planned funding cut gets results

by Heidi Westfield

Bonnie Field was upset when she heard about the Ontario government’s plan to cut OHIP coverage for out-of-country hemodialysis this past spring.

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s someone living with kidney failure, the funding cut was going to hit Bonnie hard. The London resident knew it would impact a lot of other kidney patients, too. She started emailing everyone from local politicians to the Premier of Ontario, asking them to reinstate the coverage.

Bonnie received a response from her local MPP, Terence Kernaghan.

His office organized a news conference in her community. She and another kidney patient spoke out publicly this summer, voicing their concerns about the planned cuts.

“I was quite nervous. It was out of my comfort zone,” Bonnie laughs, about her experience at the news conference. “But I felt the funding change was so wrong that I had to do it. I am a fairly stable dialysis patient, and I felt it was my responsibility to speak not just for myself but on behalf of other patients as well.”

Bonnie buys private travel insurance for any unexpected health issues while away, but it doesn’t cover pre-existing conditions such as kidney failure. This is something, Bonnie adds, that the Ontario government has acknowledged it did not take into account. One dialysis session at a Florida hospital can range in price from $330 to $700 US. Losing the OHIP coverage—up to $210 CAD per out-of-country dialysis treatment —would make those sessions even more expensive.

After hearing from kidney patients and The Kidney Foundation, the government reversed its decision in August, 2019. Bonnie is happy to have the funding back, but would like to see more support for kidney patients.

“I am glad they have reinstated it, but keeping it at the same rate is not acceptable,” she says.

“The government has not raised the rate of reimbursement in more than 30 years, while the cost of dialysis is continuing to go up. So that is what I am continuing to pursue.”

Bonnie encourages other patients to speak out on issues that matter to them, if their health allows it. “If no one says anything,” she stresses, “change is not going to happen.”  Fall 2019 / Kidney Living /

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MEDICAL RESEARCH MEDICAL RESEARCH

Kidney Foundation Deepens Investments in a Key Priority Expanding Upon Our Research Commitment

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ach year, The Kidney Foundation of Canada provides over $4 million in funding to kidney-related research conducted in Canada, and furthering kidney research remains among the Foundation’s top priorities. As such, we will be increasing the maximum research grant amount by 20 percent, as of the 2019-20 competitions, in the following categories: • Kidney Health Research Grant (formerly known as Biomedical Research Grant) • Allied Health Kidney Research Grant (formerly known as Allied Health Research Grant) “The Kidney Foundation strategic framework’s first priority is to make smart and important investments in research to improve patient outcomes and find a cure,” noted Greg Robbins, President of The Kidney Foundation of Canada’s National Board of Directors. “And one of the objectives to achieve this is that our research funding supports the four research pillars (biomedical, clinical, health systems and population

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health) to ensure funded research projects have a positive impact on patient outcomes.”

The Foundation has changed the names of these competitions to more accurately describe the research we fund.

“The grants provided by The Kidney Foundation have played a critical role both in expanding our knowledge of kidney disease and in advancing the careers of some of this country’s leading researchers,” added Dr. Christopher Kennedy, Chair of The Kidney Foundation of Canada’s Kidney Health Research Grant Scientific Committee. “ The additional $20,000 over two years that this increase represents can have an important impact on any given research project. For example, it could pay for roughly 400 hours of a lab technician’s time or could be used to further propel projects that involve graduate students.” 

www.kidney.ca/ontario

VOLUNTEERS

Inspired by Impact A volunteer chooses to leave a legacy

An encounter with a former executive director of The Kidney Foundation led Harvey Thomson down a volunteer path that inspired him so powerfully, he has chosen to leave a legacy to support those impacted by kidney disease.

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chance meeting with that executive director brought me into this organization, but it’s been the dedication of the staff and volunteers that has led me to stay involved for the past 12 years,” said Harvey. “I’d spent decades as a consultant. He asked me to help with a restructuring process within the organization and I saw it as an opportunity to use my skills in organizational management to help a great charity become even more effective.”

As he became more involved with The Kidney Foundation, Harvey found the work and mission to be incredibly compelling. “I was, and still am, struck by the commitment of people who have been affected by kidney disease. They are always so eager to share their stories and help others who are dealing with similar issues. I found that my own commitment grew the longer that I worked with this wonderful group of staff and volunteers.”

His initial volunteer engagement led to commitments as a branch board member, eventually becoming its president, then to the national board of directors, where he was extensively involved in policy redevelopment.

Harvey’s dedication and generosity, both of his time and financially, are all the more extraordinary considering the fact that neither Harvey, nor anyone in his family, has ever been personally affected by kidney disease.

“My admiration for The Kidney Foundation really made me want to do something more than volunteer my time, make donations and attend events,” said Harvey.

“When the past president of The Kidney Foundation of Canada, a woman much younger than me, passed away quite suddenly, she left a legacy gift in her will to The Foundation and it struck me immediately that was something that I should consider doing. It took me and my wife a few years to get around to updating our wills, but when we did, it was incredibly easy to add a gift in our will.”

As someone who participates in numerous local events and activities, Harvey is a long-term and dedicated supporter and volunteer who has been inspired by the impact of programs and The Foundation’s commitment to research. “Given that kidney disease will be affecting more and more Canadians in the years ahead, I can’t think of a more important way to leave a lasting gift.”  Fall 2019 / Kidney Living /

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ADVOCACY

Ontario Branch

1599 Hurontario St., Ste. 201 Mississauga, ON L5G 4S1 1-800-387-4474 • 905-278-3003 ontario@kidney.ca

African-Caribbean Kidney Association 1-800-387-4474 acka@kidney.on.ca Brampton

1-800-387-4474

Brant County

iStock.com

O

Getting Around Understanding the impact of sourcing accessible transit

ntarians affected by kidney disease who attend a hospital, clinic or satellite unit for their life-sustaining dialysis treatments and medical needs often experience difficulty in locating available, accessible and affordable public transit within their communities.

There are many challenges that a person can experience within their community’s public accessible transit system. This can include: long wait times to book accessible transportation; the lack of availability to secure a transportation ride to and from their treatment and medical appointments as well as limited service hours in operation that do not coincide with dialysis treatment schedules.

We have been receiving increased calls from patients and families expressing their concerns over the lack of available, accessible and affordable public accessible transit within their communities. We want to hear from you. Please contact us to share your experience of how you have been impacted by the lack of available accessible and affordable public accessible transit.

Email Ontario.programs@kidney.ca or call 1.800.387.4474 ext.4970. 

Quot es, Not es Anecdot es

&

“We make a living by what we do, but we make a life by what we give. “ ~Winston Churchill

18 / Kidney Living / Fall 2019

1-800-387-4474 brant.president@kidney.ca

Central Ontario

1-800-387-4474/905-278-3003 daniela.piotrowski@kidney.ca

Chinese Renal Association 1-800-387-4474 ext. 4977 shukyu.fong@kidney.ca Durham Region 1-800-387-4474 Eastern Ontario 613-724-9953/1-800-724-9953 melissa.forster@kidney.ca Hamilton & District 1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca Kingston 613-542-2121 melissa.forster@kidney.ca London & District 1-800-387-4474 ext.4860 rizwana.ramzanali@kidney.ca Niagara & District 1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca North Bay 1-800-387-4474 Northern Superior 807-624-2680 marion.harms@kidney.ca Sarnia-Lambton 519-344-3462 elaine.hayter@kidney.ca Sault Ste. Marie 705-949-0400 tannis.mcmillan@kidney.ca Timmins-Porcupine 705-235-3233 tpkidney@ntl.sympatico.ca Waterloo – Wellington & District 1-800-387-4474 ext. 4966 tracey.babineau@kidney.ca Windsor & District 519-977-9211 erika.muscat@kidney.ca

www.kidney.ca/ontario

FOOD AND NUTRITION

Kidneys, Beans and Greens

by Claire Chartrand, MSc., RD, Niagara Health System

www.kidney.ca/ontario

T

StoryBlocks.com

raditional dietary guidelines for people with chronic kidney disease recommended avoiding many plant based foods such as beans, lentils, nuts and whole grains out of concern that these foods would raise phosphorous and potassium levels. However, a more plant-based diet has been associated with many health benefits such as lowering blood pressure and cholesterol, better management of diabetes and weight, and even slowing the progression of kidney disease. So does the CKD population really need to avoid particular plant based foods?

Over recent years there has been emerging research on how phosphorous is absorbed from different foods: • Phosphorous from plant-based foods such as beans, lentils, nuts and whole grains is actually poorly absorbed; • Phosphorous from animal-based foods like poultry and meat is moderately absorbed; • Phosphorous in processed foods such as colas and processed cheese slices is highly absorbed.

Therefore, the total amount of phosphorous absorbed from plantbased foods can actually be equivalent or lower than the amount of phosphorous absorbed from meat, poultry, etc. In processed foods, Fall 2019 / Kidney Living /

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FOOD AND NUTRITION

phosphorous is often added in the form of sodium phosphate, phosphoric acid, monocalcium phosphate, etc. It is important to check the ingredient lists of processed foods for any “phosphate” containing ingredients.

How can you incorporate more plant based foods into your diet?

• Replace white refined grain products with whole grain products; • Add unsalted nuts to cereals, baking, salads, or at snacks; • Add beans and lentils to soups, salads, chilis, quesidillas, etc.; • Have hummus on vegetables, low sodium crackers, and pitas; • Have nut butter on fruit and low sodium crackers or bread; • Use tofu in stir fries, lasagnas, sandwiches; • Include vegetables and fruits at every meal (cover half of the plate) What about potassium?

The amount of potassium in plant-based foods can vary. For example tofu and chickpeas are lower in potassium than soybeans and white beans. For those with a history of high potassium, it is important that you meet with your renal dietitian for assistance in planning safe vegetarian meals. 

References: 1. Kalantar-Zadeh et al. Understanding sources of dietary phosphorous in the treatment of patients with chronic kidney disease. Clin L Am Soc Nephrol 2010; 5: 519-530 2. Moe et al. Vegetarian compared with meat dietary protein source and phosphorous homeostasis in chronic kidney disease. Clin J Am Soc Nephrol 2011. 6: 257-264 3. Banjeree, T. Yang, L. Deidra C. Dietary patterns and CKD progression. Blood Purification 2016; 41: 117-122

Curried Chickpea Salad (Recipe from Spice It Up) Portions: 6 Serving Size: ¾ cup Ingredients • 1 cup water • 1 cup dry couscous • 1 can no salt added chickpeas • ½ cup dried cranberries • 2 green onions thinly sliced • ¼ cup fresh cilantro chopped Dressing • 2 Tbsp curry powder • ¼ cup apple cider vinegar • 1/3 cup canola oil • 2 tsp fresh ginger grated • 1 tsp lemon juice Preparation 1. In a medium saucepan, bring 1 cup of water to a boil and prepare couscous following instructions on package. Transfer cooked couscous to a plate to cool.

2. In a bowl, combine couscous, chickpeas, cranberries, onions and cilantro.

3. In a small bowl, prepare the dressing: whisk together curry powder, vinegar, canola oil and ginger until combined.

4. Drizzle the dressing over the couscous and stir to combine. Add some lemon juice, if desired. Enjoy! 

Information and tools to help you manage your renal diet.

KIDNEYCOMMUNITYKITCHEN.CA 20 / Kidney Living / Fall 2019

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

community highlights t East Asian Internal Service Network Charity Golf Tournament The Kidney Foundation was grateful to receive a portion of the proceeds from the East Asian Internal Service Network Charity Golf Tournament in September. Thank you to the organizing committee for their leadership and dedication in planning this year’s event and co-supporters Greenfield Golf and Mandarin Holidays for their contributions. q Celebrating 50 Years of

Transplants Congratulations to St. Michael’s Hospital on the 50th anniversary of its Transplant Program. Though the program is now one of the largest in the country, it started with humble roots.

Fifty years ago, St. Michael’s successfully completed Canada’s first heart transplant, but kidney transplantation was the only organ transplant program that stuck.

Sadia Baig, Program Coordinator (far left) and Kidney Foundation volunteers Wendy Narh and Maral Azimi pose with Nephrologist, Dr. Jeff Zaltzman at a transplant education event earlier this year at St. Michael’s.

p A Run Away Success

The 10th annual EXACT Yorkville 5K Run raised a record-breaking $851,679 for 30 local Toronto charities including $40,000 for The Kidney Foundation.

Special thanks to all of the runners, donors, Leah Carr (Ontario Branch Past Board Member) and Jordan Korenzvit (Exact Yorkville Run co-founder) for your support and fundraising efforts.

Top: Leah Carr (centre) with one of the donations directed to The Kidney Foundation. Right: Run Organizer, Jordan Korenzvit with Mayor Tory and Kelly Foss, Director of Events & Partnerships www.kidney.ca/ontario

Fall 2019 / Kidney Living /

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COMMUNITY HIGHLIGHTS t Couple Honours Mom’s Journey

u Kidney Clothes in the community On September 14, 2019 Kidney Clothes participated at a community event in Scarborough at the Red River Designs Property. The event featured a farmer’s market, handcrafted items for sale and attendees were encouraged to recycle their used textiles to Kidney Clothes.

Toronto Operations Manager, Ronald Ramlogan attended the event and shared information about Kidney Clothes and how the funds are used to support programs and services to help Canadians living with kidney disease.

with Kidney Disease at Wedding Paula began her kidney journey in 2017 when her doctor found her kidneys functioning at 15 percent. Paula started dialysis in May the following year and she was overwhelmed with support from her family. Her sister, Linda was a good match and the pair began their transplant journey. “I will never forget the day she phoned me to tell me. Words can’t express the gratitude I feel for her and everyone who was testing and willing to donate,” said Paula. After a successful transplant in February, 2019 both Paula and her sister Linda are doing well.

On July 20, 2019, Paula’s son Tyler married Aly. To honour her amazing journey with kidney disease and the transplant, the couple announced they were collecting donations for The Kidney Foundation. If guests wanted to see the couple kiss, a donation was needed! Tyler and Aly now remember their day, not only as a time they committed to each other but also a time when their families came together to support a better future for those living with kidney disease.

t Mini donation makes impact A special thanks to Evan Ezewski, Vice President of the Toronto MINI Club for organizing a fundraiser in memory of his dear friend and a Charter Member of the Southern Ontario MINI, Gilbert Little.

Gilbert passed away in December, 2018 and his friend Evan decided to honour and remember him by selling stickers bearing his distinctive license plate, the year and month of his death, the colour of his car, and his personal slogan at all of the MINI cruises/shows/events that he would have attended this 2019 motoring season. Through Evan’s efforts, the support of the MINI community, and at the request of Gilbert’s family, The Kidney Foundation received over $2,000 to support others living with kidney disease.

22 / Kidney Living / Fall 2019

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

For details about events in your community, call The Kidney Foundation of Canada Chapter nearest to you, or visit www.kidney.ca.

November 2019 28 30

Transplant Connect Peer Support, Toronto Holiday Party, Chinese Renal Association, Toronto

15 15 21 27

December 2019 1 4 4 8 10 10 11 11 17 18

Patient and Family Christmas Party, Windsor Kidney Connect Peer Support, Kitchener Kidney Connect Peer Support, Scarborough Silver Bells Holiday Market, Sault Ste. marie Kidney Connect Support, Niagara Kidney Connect Support, Thunder Bay Kidney Connect Support, Mississauga Chinese Kidney Connect Support, Scarborough Kidney Connect Support, Ottawa Kidney Connect Coffee Club, Oshawa

January 2020 7 7 8 8 9

Kidney Connect Support, Niagara Kidney Connect Support, Kitchener Chinese Kidney Connect Support, Scarborough Kidney Connect Support, Scarborough Transplant Connect Support, Toronto

www.kidney.ca/ontario

Kidney Connect Coffee Club, Oshawa Kidney Connect Support, Thunder Bay Kidney Connect Support, Ottawa Kidney Connect Support, Mississauga

February 2020 2

Chinese New Year’s Dinner, Scarborough 4 Kidney Connect Support, Niagara 5 Kidney Connect Support, Scarborough 12 Chinese Kidney Connect Support, Scarborough 12 Kidney Connect Support, Kitchener 13 Transplant Connect Support, Toronto 18 Kidney Connect Support, Thunder Bay 18 Kidney Connect Support, Ottawa 19 Kidney Connect Coffee Club, Oshawa 27 Kidney Connect Support, Mississauga 28 Pastalicious, Sarnia

March 2020 March is Kidney Health Month.

12 Launch of Six Degree Challenge 2020 3 Kidney Connect Support, Niagara 4 Kidney Connect Support, Scarborough 7 Italian Night, Ottawa 10 Kidney Connect Support, Kitchener 11 Chinese Kidney Connect Support, Scarborough 12 Giving Day for the Six Degree Challenge 12 World Kidney Day 12 Transplant Connect Support, Toronto 17 Kidney Connect Support, Ottawa 18 Kidney Connect Support, Thunder Bay 18 Kidney Connect Coffee Club, Oshawa 23 Kidney Connect Support, Mississauga

April 2020 April is Be A Donor, organ and tissue donation awareness month.

25 Ontario Branch AGM

E-newsletter Get Kidney Foundation news direct to your inbox by registering for our free monthly e-newsletter. Receive the latest news and information aimed at people living with kidney disease, their families and supporters. Find out how the Foundation can help you, what you can do to support kidney patients, and what’s happening with kidney research in Canada.

Register today—kidney.ca/ontario/e-news.

Fall 2019 / Kidney Living /

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Your Car Has a Higher Calling.

Donate any make, model or year of any car, truck or van.

FAST, FREE TOWING Within 48 hours.

VALUABLE TAX RECEIPT $300 minimum.

A GREAT FEELING You’re improving the lives of people with kidney disease.

kidneycar.ca

1 866 788 2277

*Service may not be available in all geographical areas.

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Postmaster: Please return undeliverable Canadian addresses to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1