Living
KIDNEY Spring 2020 • Volume 13 • Number 1 • kidney.ca
A PUBLICATION OF THE ONTARIO BRANCH
Finding strength in connection
This edition of Kidney Living was in production prior to the Covid-19 pandemic, which has impacted all events, meetings and gatherings. Details about events, many of which are providing virtual options, are available on the website or by calling 1-800-387-4774. Covid-19 Information The Kidney Foundation is providing regular updates about the data that may be most relevant to kidney patients and their families, including updates from provincial renal and organ donation agencies and Canadian Blood Services. Visit kidney.ca for more information. Patient Programs Continue to be Available The Foundation’s patient programs are still here to help. Our team members are available by phone or email, as our offices are closed to visitors. • •
Call 1-800-387-4474; general email ontario@kidney.ca; or contact our programs team Ontario.programs@kidney.ca
Peer support is available through our toll-free number at 1-866-390-PEER (7337) or online at kidneyconnect.ca (registration is required). and by registration for our online portal at. In some communities, teleconference calls have replaced group meetings. Information and referral, which provides general kidney health and organ donation related information, is still in place by phone or email. Short-term financial assistance program remains in place and applications are being processed; as per usual, applications must be submitted by a renal social worker. We Need Your Help We need your help more than ever. In this time of uncertainty, we're especially concerned about those we strive to serve. The demand for our programs and patient services, like peer support and short-term financial assistance, will continue to grow. Because of you, we can be there for them every step of the way. Here's how you can help: • •
Make a donation online at kidney.ca/donate to ensure that your support is not deterred by any mail interruptions should they occur. Your tax receipt is issued instantaneously when you donate online. Watch for details about our Kidney Walks (update as needed to reflect what we want to say) and start fundraising today at kidneywalk.ca
what’s inside SPRING 2020
FOUNDATION/FUNDRAISING 3 New Website, New Look for 2020 17 April is Be A Donor Month 19 Celebrate the Milestones 22 Community Highlights SERVICES AND SUPPORT/MEDICAL RESEARCH 4 Reaching Out 8 Top Priority 18 Help at Your Fingertips
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PERSONAL STORY 6 Living with Kidney Disease in Your 20s 7 The Price of Kidney Disease 10 A Gratitude Attitude 21 A Lifetime Journey LIFESTYLE/FOOD & NUTRITION 12 10 Benefits of Journaling for 10 Minutes a Day 14 Breakfast 15 Kidney-friendly Pancakes (Recipe) ADVOCACY 16 Get Involved, Make a Difference
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Cover: Malcolm and Shirley. See story on page 9. Photo credit: Rose Calibani 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
©2020 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 1-800387-4474 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. gepmgroup.com
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19 kidney.ca
EDITORIAL
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New Website, New Look for 2020
Living
KIDNEY Spring 2020 • Volume 13 • Number 1 • kidney.ca
A PUBLICATION OF THE ONTARIO BRANCH
Finding strength in connection
The Kidney Foundation is sharing information about the Covid-19 pandemic that may be useful to patients and their families. Visit kidney.ca for more information.
e launched into 2020 with a redesigned and refreshed website to serve our community better. It also showcases our new logo and brand. Months of consultation and research went into these new elements. We gathered the input of stakeholders from across Canada through conversations with patients and their families, donors, volunteers, professional and allied healthcare partners, and we spoke to people who had not engaged with the Foundation before. This marks a new age in kidney awareness. Canadians need to stand up and take notice of their kidney health, and to understand the serious life-changing impacts of kidney disease. Our fresh new look reflects our ongoing commitment to be an innovative, dynamic force in improving the lives of those affected by kidney disease. Excellent kidney health, optimal quality of life, and a cure for kidney disease: this vision guides us to be a collaborative, inventive and focused leader in the development of programs, services, research opportunities and awareness campaigns that have had a positive impact on the millions of Canadians living with, or at risk of developing, kidney disease. Discover the impact Kidney Foundation volunteers and employees have made over the past 55-year history of our organization by browsing our new site. We have led research investments into better treatments options, our programs and services provide hope and help patients thrive. Amplifying patient voices has influenced organ donation systems and best practices. Together, with your support, we can continue to make vast improvements in the lives of those affected by kidney disease and educate those at risk. We invite you to join us in Kidney Foundation activities and advocacy efforts in your community. Help us to inspire Canadians to take action by learning more about the vital role kidneys have in their overall health. Our look may have changed, but our commitment to kidney care hasn’t. Greg Robbins, National President & Elizabeth Myles, National Executive Director
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Spring 2020 / Kidney Living / 3
SERVICES AND SUPPORT
Reaching Out Learning you have a chronic illness isn’t easy.
Photos.com
by Trish Reynolds
There’s no instruction manual, play-by-play book or even a road map to mark out the journey. At a time when there is confusion, concern and overwhelming feelings, it can help to reach out and connect with someone who understands.
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he Kidney Connect peer support program is based on the belief that speaking to someone who has a shared lived experience can be a benefit. The program is delivered in multiple ways to offer patients and their caregivers opportunities to connect in the way they feel most comfortable: by phone online at kidneyconnect.ca in-person within your clinic setting at a group meeting* We have come a long way in speaking more openly about mental health. Awareness campaigns like Bell Let’s Talk Day and Canadian Mental Health Week work to help destigmatize attitudes about mental health and support. Yet, it still takes courage to take the first step to reach out to get help. “It’s our goal for you to have a meaningful experience and get the support you need,” said Sadia Baig, Programs Coordinator for The Kidney Foundation. “When you reach out to our Kidney Connect tollfree line, you will speak to a member of our programs team, who will gather some basic information about your questions and concerns. With that information in hand, we can match you with one of our trained peer support volunteers.” kidney.ca
SERVICES AND SUPPORT
Peer support volunteers are trained and receive ongoing mentorship support to learn how to shape their story in a meaningful way to provide hope and encouragement. Our volunteers come from all walks of life, different ages, diverse backgrounds and experiences, and we can provide support in multiple languages. “If you are newly diagnosed and choosing a type of dialysis, we can connect you to someone who has done peritoneal dialysis and hemodialysis,” added Sadia. If you are a family member or a patient who has questions about transplant or becoming a living donor, we are here to help you through your pre- and post-transplant journey. Group support is available in many communities and is facilitated by trained volunteers who understand the complexities of what it is like to be affected by kidney disease. “The discussions focus on the questions and concerns of those in attendance, so they vary each month,” said Craig Lindsay, Programs Coordinator at The Kidney Foundation. Prefer to connect from the comfort of home? You can access support through our Kidney Connect online community. The platform has been updated and is a place where people living with—and affected by—kidney disease get connected. There are various groups including groups for youth and young adults. Calling us for the first time? We’re ready to chat. • Similar to trying anything new, it’s the first step or the first phone call that’s the hardest. Call us at 1-866-390-7337 to get started. There is no cost to access the program. • No question is a silly question. Ask away, we’re here to help. • Caregivers need support too. We can connect you with fellow caregivers who understand what it’s like to care for someone living with kidney disease. • Let’s talk transplantation. Donors, living transplant, life on the list. We’ve got you covered. • Wherever you are on the kidney journey. We’re here to help. We can provide information about resources and supports. *Visit kidney.ca/supportmeetings to see if a group meets in your area.
You’re not alone. Speak to a peer support volunteer who understands what it’s like to live with kidney disease.
We’ve been there too.
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 president@acka.ca 1-800-387-4474 Brant County
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 katie.kyte@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 ontario@kidney.ca Sarnia-Lambton 519-344-3462 elaine.hayter@kidney.ca Sault Ste. Marie 705-949-0400 tannis.mcmillan@kidney.ca Timmins-Porcupine 705-365-7492 timmins.president@kidney.ca Waterloo – Wellington & District 1-800-387-4474 ext. 4966 tracey.babineau@kidney.ca Windsor & District 519-977-9211 erika.muscat@kidney.ca
kidney.ca | 1 866 390 7337 kidney.ca
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PERSONAL STORY
Living with Kidney Disease in Your 20s
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Peer Support provides comfort
by Heidi Westfield
att is feeling a lot better these days. His health and outlook have improved since the 25-yearold had a kidney transplant in early January. “I feel like a whole new person, a whole new man,’ he reflects, on the impact of the surgery. “I am looking forward to getting back to work and being active again.” Matt was diagnosed with Alport Syndrome about five years ago, while studying Communications and Business at Carleton University in Ottawa. The genetic disease damaged his kidneys, and has also led to hearing loss. In the summer of 2018, as his renal function worsened, doctors began the process of matching him for a kidney transplant. His father was
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going to be the donor. A year later, while the medical work-up was continuing, Matt lost kidney function and began dialysis three times a week. It was while at a dialysis session, that he learned about peer support meetings organized by The Kidney Foundation of Canada. He went to a group meeting, and found it helped him better cope with his new challenges. “With dialysis being so new to me, I didn’t know what to expect. I had a lot of questions about nutrition, foods to avoid and the whole dialysis lifestyle,” he notes. “I left with a lot of my questions answered and feeling very confident in how I was going to manage this new transition in my life. It was comforting to be around other people who could relate to what I was going through.” Matt spent five months on dialysis before his transplant. Over that time, he learned about the Kidney Walk, and decided to take part. He set an ambitious target, hoping to raise $5,000 for The Kidney Foundation. After sharing his personal story, he was overwhelmed by the outpouring of support. In the end, Matt raised $17,000 to become one of the top fundraisers in Ontario. “It was awesome to have the support of friends and family coming out to the Walk. Honestly, you couldn’t have asked for a better day. It was a lot of fun, and I am glad I took part. Can’t wait for next year’s walk!” Matt’s advice to other young people facing kidney disease is not to keep everything to yourself. Sometimes, having a serious illness can be isolating. “Don’t be afraid to speak with others and lean on your family and friends,” he says. “Attending peer support groups are beneficial too. Being around people going through the same thing can help a lot.” kidney.ca
PERSONAL STORY
The Price of Kidney Disease The cost isn’t just to your health
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by Trish Reynolds
our short years ago Stef first learned that his kidneys had failed. “I would be sitting on a stool at the body shop where I worked and fall right off. The next thing I knew I was waking up on the floor.” Stef worked long hours, and admits that thinking about his health wasn’t always a priority. The diagnosis of both diabetes and high blood pressure—the two leading causes of kidney disease—came as a surprise, and learning his kidneys had failed was a shock. Life with kidney disease has changed just about everything. No longer able to work at the job he loved, Stef says his new part-time job is dialysis. He makes the 30-minute drive to the dialysis unit three times a week. On his off-days his calendar is filled with further appointments. “The dialysis schedule itself isn’t so bad, it’s all of the appointments that makes it really hard,” Stef shares. From medications, to gas, to hospital parking—there is no end kidney.ca
to the expenses. “The travel up and down to the hospital, the parking at the hospital, going back and forth to the doctors . . . it all adds up, and it’s money I don’t have,” said Stef. Last year while hospitalized, Stef learned that he needed to vacate the house where he lived. The news was quite unexpected, and Stef wasn’t quite sure where to turn. The Kidney Foundation’s short-term financial assistance provided some support, and his friends helped him find a room to rent and move. “I had a chance to go into government subsidized housing, but even that was too expensive. I keep moving further and further away from my friends and my doctors, but the place where I am now is what I can afford.” A 2018 report released by The Kidney Foundation of Canada: The Burden of Out-of-Pocket Costs for Canadians with Kidney Failure, has served as the cornerstone for many of The Kidney Foundation’s recent advocacy efforts by underscoring the
financial hardships that kidney patients face every day. Unfortunately, Stef’s situation is not unique. With increased out-of-pocket costs related to travel expenses to and from dialysis, medication costs and loss of work, more than 25 percent of patients saw their annual income decrease by at least 40 percent since starting dialysis. At a time when their kidneys are failing, the healthcare system is also failing individuals living with kidney disease. Despite the hardships that Stef has faced, he wants others to know that there is life after a kidney disease diagnosis. He hopes that greater understanding of the many issues dialysis patients face, will encourage the government to make changes to help those who face increased costs because of kidney disease. “If you have kidney disease, you need a lot of help and The Kidney Foundation gives you that,” he added.
Spring 2020 / Kidney Living / 7
COVER STORY
Top Priority Need to prioritize transportation for dialysis patients
by Heidi Westfield
q Sault Ste. Marie’s Accessibility Advisory Committee (AAC) gather at a recent meeting.
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hen Newfoundland was hit with a record-breaking blizzard early this year, Shirley Pulkkinen’s first thought was: “What is happening to the dialysis patients out there? How are they going to get to their treatments?” During that emergency, officials on the East Coast made access to hospitals for hemodialysis patients a top priority as soon as it was safe to do so. Shirley finds that kind of response encouraging. As a longtime renal social worker, she has seen the difficulties kidney patients can face getting to their dialysis treatments. “For some people their health is so fragile that missing one dialysis session may kill them,” she says. “This is a life-and-death situation. We need to have the infrastructure to ensure that dialysis is not overlooked and is part of emergency plans for every community.” Shirley is among a growing number of advocates across Ontario bringing attention to the transportation barriers facing dialysis patients. She is a member of a group of volunteers who comprise the Accessibility Advocacy Committee (AAC) for the city of Sault Ste. Marie. They are working to highlight some of the limitations of local transit options and call for more affordable, accessible services. She would like to see:
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COVER STORY
• Shorter wait times for accessible rides • Expanded/flexible hours of transit that better coincide with dialysis appointments • Prioritizing dialysis patients on services such as Para Bus • More wheelchair-accessible taxis • Door-to-door services for those people requiring it (currently it is curb-to-curb). She recalls how last winter Sault Ste. Marie was hit with a major snowstorm that made travel very difficult. Cars couldn’t get out of driveways, and private taxis were taken off the roads. “I came in to work on Monday in a 4X4 truck but half of my patients couldn’t get in for dialysis, so they had a long stretch of time without dialysis as their last session was on a Friday.” With the renal team, she was able to juggle the next day’s schedule to bring in all the patients who missed earlier appointments, but it was a very stressful situation. Shirley has found that one of the biggest misconceptions about dialysis patients is that they “appear” healthy, and able to get around on their own. “People with kidney failure may look fine on the outside,” she notes, “but they are often exhausted and vulnerable.” Many patients are elderly and have mobility issues. Others live on a very limited income. It is hard enough on a regular day to get themselves back and forth from hospital. When there is a blizzard, ice storm or flooding of the access highways, the task becomes incredibly daunting. “People on dialysis have a hidden disease that you cannot see, touch or feel but it is there. We need to take care of these patients and get them to and from dialysis safely.” Have you had trouble getting to hemodialysis appointments? We want to hear from you. Please contact us to share your experience of how you have been impacted. Email: Ontario.programs@kidney.ca or call 1.800.387.4474 ext. 4970. kidney.ca
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p Malcolm and Shirley
Credit: Rose Calibani
y name is Malcolm, and I live in Sault Ste. Marie. I have kidney disease and visit a local hospital three times a week for hemodialysis treatments. I also have mobility issues, and use a wheelchair to get around. What I would like Canadians to understand is that dialysis is an absolute must for people like me, who live with end-stage kidney disease. Every single thing you undertake and want to do, you have to think about dialysis first. My dialysis sessions in hospital keep me alive. The problem is, getting to those treatments can be a challenge. There are special city buses for people with mobility issues, but the bus schedule does not always coincide with my medical appointments. Having more buses on the road, with extended hours, would make a big difference for people in wheelchairs who rely on public transit. I often take a wheelchair taxi to the hospital for dialysis sessions instead. The taxis are better because they can back up into your driveway, while the buses only offer curb-to-curb service. This makes a big difference when the weather is cold and there is a lot of snow and ice. The challenge is that taxis are more expensive. A one-way trip from home to the hospital costs me about $22. The Ontario Disability Support Program (ODSP) covers the cost of taxis now, but I will lose this benefit when I turn 65. A growing number of people in Ontario need dialysis, and many of them are not great with mobility. I would like to see more attention focused on transportation issues, especially in Canada where weather is often a barrier. Governments should be more on top of this, to ensure dialysis patients are getting where they need to go. Don’t be afraid to voice your needs to your healthcare providers, to ODSP, and anyone else who provides your transportation. Spring 2020 / Kidney Living / 9
PERSONAL STORY
A Gratitude Attitude A reporter goes from telling the stories of others to telling her own story
by Cristina Howorun
My story isn’t actually that unique. It’s one that thousands of Canadians face, one that is often misunderstood. I am a daughter, sister, partner, friend, news reporter—and yes, I have kidney disease too.
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very person facing a diagnosis can remember the moment they were told something was wrong. I was at a press conference. I felt so run down, that I couldn’t handle standing for 10 minutes. I’d been feeling this way for months. Exhausted. Itchy. Sleepless. That day, back in March 2018, my camera man was slowly following me back to our truck as I checked my messages. There was a call from my doctor’s office telling me to call them. I was too distracted by my story and just wanted to get to my next interview when my phone rang again. It was my doctor’s office. It was unsettling. How often does a physician’s office call you twice over the span of two hours? The receptionist immediately put me through to the
I had no idea how sick I had been until I realized what life felt like for so-called healthy people.
u Cristina and her cousin Christine following transplant
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PERSONAL STORY doctor, who told me I appeared to be in complete renal failure and needed to rush to the closest ER. I thought they were wrong. I knew both my father and uncle had Alport’s syndrome, which leads to kidney disease, and both were successful transplant recipients. I had been monitored since birth and there was no indication that I would be affected. We jumped in the truck and hightailed it to the hospital, armed with my blood test results. The intake nurses didn’t believe the lab reports. I went from being on-air covering a story to an IV in 24 hours. The numbers were right. Test after test revealed I had between six and eight percent kidney function. After the shock faded, I started to cry. I remembered how absent my father had been from my childhood; how hard dialysis was on him 30 years ago. I didn’t want that. I wanted to start a family and continue my career. And in that moment, all of that now seemed impossible. My nephrologist looked at my numbers and explained that a transplant was necessary—and dialysis too, but maybe we could hold off for a few months with drastic changes to my diet and workload. My mother immediately started the work-up to be a living donor, but my kidney function was failing fast. In September of the same year, I started peritoneal dialysis and my whole life changed. We moved to a place that would accommodate all of the gear that came with doing peritoneal dialysis. There were the endless bags of solution. My partner became my at-home nurse. He looked out for—and after—me. We were both tied to the machine. My career was being put on the back burner for a disease that I couldn’t control. When my mother was ruled out as a candidate, my second cousin Christine immediately stepped up. After kidney.ca
months of testing, we were deemed a perfect match. By this time my kidney function was reduced to less than four percent and we were already increasing my time on the machine. Preparations for the transplant seemed to happen so fast. I was so nervous I called Christine to talk about postponing the surgery. I was scared. Petrified. Dialysis wasn’t easy, but the idea of undergoing a transplant surgery was frightening. What if my body rejected my cousin’s kidney, making the whole exercise futile? I was scared that I would die on the operating table—or worse—that something would happen to her. But my donor and hero talked me off the edge. And on the same day that the Raptors won the championship, I won another chance at life. Everyone I met who had undergone a transplant warned me of how I’d gain lots of weight. I was scared of the scars from both my dialysis tubes and the transplant, that would forever mark me. Sure, I’ve gained some weight and struggle with the body image issues, but sharing my scars with my viewers has helped me to overcome them. I’m thankful that I had a camera man and photographer to help me document and share my experience with our viewers. It helped me, and hopefully helped others going through this same experience and those who will. I had no idea how sick I had been until I realized what life felt like for so-called healthy people. Reaching out to The Kidney Foundation post-transplant was just one way I sought support. It helped to speak to others who had gone through a similar experience, to understand that I wasn’t alone, and my feelings were normal. There are hidden scars—the guilt that my cousin had to underdo the surgery to save my life, the guilt that for the better part of two years, I was
Photo creditL Josef Fazio
Cristina uses her platform as a news reporter to share her experience with others.
useless to my friends, family and fiancé. The guilt of knowing how lucky I am, and that thousands of people across Canada are waiting for the very same transplant I was so blessed to receive. But beyond guilt, there is such a deep sense of gratitude—gratitude to the health professionals who cared for me and continue to monitor my health; gratitude for my amazing support system of friends, family and the amazing relationship I have with my cousin Christine; gratitude that kidney care continues to improve, and that my experience was different from my father’s—due in part to the research going on in labs across the country. Spring 2020 / Kidney Living / 11
LIFESTYLE
10
Benefits of Journaling for Minutes a Day Express yourself
by Erika Engel
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 who are coping with the psychosocial impact of chronic kidney disease.
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StoryBlocks.com
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LIFESTYLE LIFESTYLE
3. Calming and clearing your mind: The more you write, the clearer your thoughts and emotions will be.
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ith more than 75 percent of US households having access to a computer or some type of handheld device, many individuals undertake some form of writing on a regular basis, although it does not always result in an expression of one’s actual feelings. Even though keeping a journal is not everyone’s cup of tea, you might want to consider starting one after reading about the positive benefits, both physical and psychological, particularly during stressful periods. People often imagine that keeping a journal or a diary can be a chore. Others feel they are not cut out for it. Maintaining a journal, whether online or offline, is not something they picture themselves doing. But wait till we share the positive benefits of journaling with you. 10 powerful benefits of journaling 1. Fewer depressive symptoms: According to a study, Evaluation of expressive writing for postpartum health: a randomised controlled trial, women in an expressive writing group rated their stress as significantly reduced after completing the task. Cost analysis suggest women who did expressive writing had the lowest costs in terms of healthcare service use and lowest cost per unit of improvement in quality of life. 2. Broadening your IQ: A study by the University of Victoria observes that “Writing as part of language-learning has a positive correlation with intelligence.”
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4. Better mood management: The expressive writing, positive writing and time management control writing groups all reported significantly fewer mental and physical symptoms, lasting at least four months after writing. 5. Improved memory capacity: Expressive writing can increase working memory capacity. 6. Self-realization and acceptance: When you write, you become more aware of your thoughts and emotions. 7. Positive vibes: It helps you to release repressed feelings and negative thoughts. 8. Self-examination: Exploring the reasons and effects of your stress and anxiety makes you better equipped to deal with them. 9. Feeling good: Writing down your thoughts and feelings boosts your overall well-being. 10. Moving forward: Writing what your goals, strategies and weaknesses are is a very good tool for performance analysis. Tips for best performance • Try to write in a personalized space free from distractions. • Fix a time and try to write during that time without skipping in and out. • Be true. Write whatever emotions come to your mind, without holding anything back. • Date the entries. • You can choose to keep an online or offline journal. • Describe your experiences, even the insignificant ones. It will give you an idea about what to write and you may find the cause of what was bothering you that day. • Write with gratitude: You will be amazed to find out that there are so many things to be grateful for. • Try not to lurch into the negativities of your life. • Keep a log of successes: read it on days when you want to uplift your mood. • Add quotes that inspire you. • Keep your journal private. Keeping a journal will help you gain understanding and awareness of your emotions and experiences, which not only helps in stress reduction, but also makes you more mindful. So unwind yourself and know yourself better. Spring 2020 / Kidney Living / 13
FOOD AND NUTRITION ADVOCACY
Breakfast Kickstart Your Day the Right Way
14 // Kidney Kidney Living Living // Spring Spring 2020 2020 14
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anadians live busy lives; which leads to many of us skipping breakfast.1 Consuming breakfast can help you kickstart your day as it provides you with the energy and nutrients you need, may help you achieve or maintain a healthy weight, and can help improve your appetite control to limit foods that are higher in salt, sugar, or fat.2,3 Build a balanced breakfast to help keep you full and energized by including these items on your plate: 1. Protein – depending on your stage of kidney disease, you may need to limit protein or consume more. Some options for protein sources for breakfast include 100 g yogurt, ¼ cup cottage cheese, 1-2 eggs, and 1 TBSP peanut butter. 2. Vegetables or fruit – aim for half your plate in vegetables or fruit by including them with the main dish or as a side dish. If needed, look for low potassium sources such as an apple or applesauce, berries (raspberries, blackberries, blueberries, strawberries), canned fruit, bell peppers, onion, carrots or eggplant. 3. Grain products – look for grains such as barley, bulgur, cream of wheat, oatmeal, light rye, 60 percent whole wheat or sourdough bread. Aim for a quarter of your plate in grain products. Not a morning person? Nutritious and delicious breakfast ideas can be easy when you are in a hurry. Try these options: • Hard-boiled egg mixed with mayo on a tortilla wrap served with berries and an apple. • Smoothie made with strawberries, blueberries, collard greens, ½ cup milk or 100 g yogurt. • Half a bagel with peanut butter and apple. • Kidney-friendly pancake recipe (opposite). This recipe can be served at your next holiday celebration or make them ahead of time and pop in the toaster to warm up for an easy weekday breakfast.
FOOD AND NUTRITION
Kidney-friendly Pancakes Makes 12 pancakes Serving per recipe: Four Ingredients • 2 cups all-purpose flour • 1 teaspoon cream of tartar • 1½ teaspoons baking soda • 2 cups almond milk (no phosphorus additives) • 2 large eggs • 1 tablespoon canola oil (for cooking) • 2 cups strawberry halves • 2 cup applesauce, unsweetened Method 1. Place skillet or frying pan on medium heat to warm up. 2. Combine dry ingredients in a bowl. 3. Combine wet ingredients in a large bowl. Add dry ingredients with a whisk until completely blended and moist. 4. Add oil to pan. Scoop the pancake mixture on the skillet using a ⅓-cup measuring cup. Flip pancakes using a spatula when bubbles appear. Allow the other side to brown until the center no longer appears wet. 5. Enjoy pancakes with ½ cup strawberries and ½ cup applesauce. Nutrition Information (per serving): 393 calories, 69 g carbohydrates, 5 g fibre, 10 g protein, 135 mg phosphorus, 450 mg potassium. Modifications to the recipe will change the nutritional information.
Submitted by: Emily Campbell, MScFN RD CDE, a registered dietitian and certified diabetes educator available on Instagram @ KidneyNutrition.
Sources:
Charlebois S, et al. Fragmented Food Habits and the Disintegration of Traditional Meal Patterns: A Challenge to Public Health Nutrition in Canada? Journal of International Food & Agribusiness Marketing. 17 May 2019. 2 WebMD. Why Breakfast Is the Most Important Meal of the Day. December 27, 2019. Available at: https://www.webmd.com/food-recipes/breakfast-loseweight#1 3 Harvard Health Publishing. Breakfast and your health. March 2014. Available at: https://www.health.harvard.edu/newsletter_article/Breakfast_and_your_ health 1
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KIDNEY HEALTH MONTH
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Get Involved, Make a Difference Every good deed, big or small, has a tremendous impact by Trish Reynolds
Volunteer
oin a dynamic and diverse group of people who share a common purpose. There are roles and opportunities to fit your lifestyle and interests. Interested in educating others about kidney disease? Perhaps becoming a volunteer for health fairs might be an option. Prefer to volunteer for a single event or activity? That’s great too. We support a variety of events and activities and could use your help.
Raise your voice
Sharing your story about the impact of kidney disease is a simple way to make a difference. Canadians don’t know the impact of the disease until it happens to them or a loved one. Use your voice to share your story within your community. You can also use your voice to advocate to our elected officials or community institutions to influence change.
Register to be an organ donor
Chances are if you are receiving this magazine, you understand the gift of life. Kidney transplants are widely considered to be the best available treatment option for Canadians living with kidney disease. Talk to your friends and family about the impact of organ donation, and encourage them to register their wishes to be an organ donor at beadonor.ca/kidneyfoundationofcanada.
Take a walk
The Kidney Walks are The Kidney Foundation’s largest communitybased fundraiser and are a wonderful opportunity to meet with others who understand what it’s like to live and be affected by kidney disease. This year, we’ve set an ambitious goal to raise $1 million and we believe this milestone goal is within our reach. Join us this fall in your community.
Make a gift
Gifts come in all shapes and sizes. Through the generosity of our donors, we provide services and support to Canadians affected by kidney disease. Looking for a gift for someone who has everything? Consider making a gift in honour of your loved one. In many Ontario communities, our Kidney Clothes program will transform your used clothing and household goods into funds for programs and services. Did you know that you can also donate your unwanted vehicle to The Kidney Foundation? Each year, thousands of Ontarians’ make their car a Kidney Car. We’ll tow your vehicle away for free and provide you with a valuable tax receipt. Learn more at kidney.ca/getinvolved.
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ORGAN DONATION
April is Be A Donor Month
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or many people living with kidney disease, a transplant offers the best chance at a healthier life. Organ donation saves lives and restores health. A kidney transplant is not a cure, but it offers the best possible improvement to health and quality of life for many people living with kidney failure. More than 4,000 Canadians are on the waiting list for a transplant. Of those, 78 percent are waiting for a kidney. Green Shirt Day – April 7, 2020 We are pleased to announce that we’ve joined the Canadian Transplant Association as a community partner in the Green Shirt Day initiative. The annual awareness day is a wonderful opportunity for The Kidney Foundation and the kidney community to inspire Canadians to become organ donors. Green Shirt Day honours the legacy of Logan Boulet, a 21-year-old Humboldt Broncos hockey player who died following a tragic bus crash that took the lives of 16 people on April 6, 2018. Logan’s parents, Bernadine (Bernie) and Toby Boulet, honoured Logan’s wish to be a donor, saving the lives of six Canadians. Just prior to the accident, Logan told his parents he wanted to register as an organ donor when he turned 21, inspired by his coach Ric Suggitt, who became an organ donor after passing away suddenly in 2017. Logan, giving the gift of life, inspired more than 100,000 Canadians to register their intent to donate their organs in a national groundswell of support now widely known as “The Logan Boulet Effect.” Let’s inspire one another by registering as donors and have the kitchen table talk with our family about organ donation. Register at beadonor.ca/ kidneyfoundationofcanada. Here are a few ways you can get involved: • Organize an Organ and Tissue Donor registration drive at your workplace. • Host or join a Green Shirt Day event in your region. • Get your green on and gather with friends, family or co-workers. • Share your support on social media and use #GreenShirtDay #LoganBouletEffect • Talk to your family about organ and tissue donation • Have the Kitchen Table Talk. Challenge your friends to do the same. #KitchenTableTalk • Light up Green (Your front door light, string Christmas lights, etc.) #LightUpGreen • Inspire others to register or confirm that they are registered at beadonor.ca • Order an Official Green Shirt Day shirt at greenshirtday.shop kidney.ca
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SERVICES AND SUPPORT
Help at Your Fingertips
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Resources to support you through your kidney disease journey
e’re committed to providing individuals living with kidney disease with the tools and resources to navigate their journey. From treatment options to travel, tax tips to restless leg syndrome, we have a comprehensive offering of brochures and fact sheets to help provide you with the information you need. The fact sheets, brochures and our two patient handbooks, “Living with Reduced Kidney Function” and “Living with Kidney Failure,” are available for download on our website at kidney.ca/Support/Resources or you can find printed versions in hospital renal units, or request a print copy by calling our office at 1.800.387.4474. Digital Tools Reimagined Kidney Community Kitchen.ca The “renal diet” is often described as one of the most challenging diets. There is no simple diet sheet that applies to everyone. Every diet must be individualized to meet the needs of each person. The Kidney Community Kitchen is a free nutritional online resource that includes recipes, nutrition information, dietitian blog and kidney diet information. The online tool was recently refreshed and features a new look and some amazing new recipes. Later this spring, the site will also include a meal planner and more!
KidneyConnect.ca – Join the Conversation KidneyConnect.ca is an online community—a place where people living with and affected by kidney disease can get connected. Read blogs from professionals and other patients, join a group and talk to others about your experience. There are various groups to join, providing you with the opportunity to connect with others who may be sharing a similar experience. Online Risk Assessment Tool Sharing the vital role that kidneys play on our overall health is core to our public awareness efforts. Because there are often no symptoms until kidney disease is quite advanced, many people aren’t aware that they have the disease until they’ve already lost most of their kidney function. That is why screening and early detection are so important. The Kidney Foundation’s risk assessment tool has been transformed. As you share your story and raise awareness about kidney disease, you can direct your friends and neighbours to kidney.ca/risk to learn about the risks and take the online quiz.
RECIPES & INFO TO HELP YOU MANAGE YOUR RENAL DIET
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FUNDRAISING
Celebrate the Milestones Join us this fall at the Kidney Walk
by Mary Diemer
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t the age of 53 I have come to the conclusion that a large part of life is celebrating milestones: birthdays, first steps, firsts of just about anything, anniversaries—and yes, even death. And when you have lived most of your life with a chronic disease, you tend to place more emphasis on “firsts” and other milestones. On September 5, 2001, my sister Marg gave me her left kidney. And we celebrated. Our first transplantiversary is a blur, and then before I knew it, five years had gone by; then double digits. How could 10 years go by that fast? Two years ago, if my kidney was a kid, she would have been old enough to get her driver’s licence. This year, she’s old enough to vote and next year she turns 19 (I shudder to think how we will celebrate that!) but when she turns 21—it’s going to be something big! Please don’t get me wrong, I celebrate my transplant every single day. One of the ways I celebrate every year is by participating in the annual Kidney Walk. I started as a walker back in 2002 and became more involved in planning the event in my community more than 10 years ago. My team—Mary’s Spare Parts—will be walking again this September in our community, making more walk memories. My team has always shown that they are behind me all the way. They’ve definitely got my back! kidney.ca
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FUNDRAISING The Kidney Walk brings together patients and their families, transplant families, renal professionals, Kidney Foundation volunteers and more like-minded individuals who want to make a difference. It’s a morning full of familyfriendly activities, a beautiful walk, and best of all—kidney stories. Kidney disease isn’t easy, but we do have some amazing stories. It’s a time when we can see we are not alone in our experience. There is a whole community of support waiting to greet us. I want to personally invite you to this year’s Walk. We might not walk in the same community, we might be in different parts of the province, but we are united in wanting to make a positive impact for all those affected by kidney disease. Thank you so much to those of you who have walked before. Welcome back if you’ve missed a year or two (hey, things happen). And to any new people who have thought about joining, but just aren’t sure, we welcome you with open arms. Together, we can support each other and make an impact where it mattes most.
it’s time to applaud our amazing volunteers. Volunteers make our work possible. Thank you for your time and dedication. National Volunteer Week April 19-25, 2020
Interested in learning more about volunteering? Visit kidney.ca/volunteer or call 1.800.387.4474
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PERSONAL STORY
A Lifetime Journey
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Using my experience with kidney disease to help others
by Jatin Sudhir
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was about four when I lost all kidney function and began peritoneal dialysis. By the age of seven, I received my first kidney transplant but it only lasted three years. I started back on peritoneal dialysis for a short time but complications from pancreatitis meant that I needed to switch to in-centre hemodialysis. The transition wasn’t easy. I went from having daily dialysis to treatments three times and then four times a week. It wasn’t easy managing my fluids and feeling the fatigue that comes with treatments. Two years later, my medical team at Sick Kids Hospital decided that I would be a good candidate to try home hemodialysis. I was the first child in North America to do hemodialysis at home. My mom trained, learning how to care for me and clean and disinfect the machine.
Today—about 18 years later—I continue to do my dialysis from the comfort of home. These days, I take care of setting up and cleaning up myself. Sure, there was another transplant in between but unfortunately it didn’t work for me. For now, I’m determined to live my best life with this amazing opportunity of doing home hemodialysis. The flexibility to do treatments at home allowed me to finish high school and pursue a college education. I think that if I was still in-centre, I would have missed a lot of classes and may have fallen behind in my studies. At the age of 18, I transitioned from care through our pediatric hospital to an adult centre in my community. The change wasn’t easy. Going from a hospital where everything is taken care of, to a place where you need to be able to open and speak up to make sure your voice is heard was difficult at first. Thankfully as I built relationships with my new medical team, it became easier. I believe that The Kidney Foundation has helped me be a stronger advocate for myself. Through the Kidney Foundation I learned about peer support and right away I knew I wanted to help however I could. I volunteer as a peer support mentor for youth and young adults. It’s important for me to use my experience to help others. I want new patients to understand they are not alone; they have someone other than their medical team to talk to. Speaking to a fellow patient who has gone through the kidney journey or is going through a similar situation can be such a help. Spring 2020 / Kidney Living / 21
COMMUNITY HIGHLIGHTS
Community Highlights
*Note, future events noted have changed their format, so check the website(s) noted for further details.
t Long Running Success Congratulations to the Alive to Strive organizing committee and founder Marie-Eve Chainey on their 10th anniversary Sunday, April 26, 2020. Marie-Eve’s passion for life and desire to help other di-alysis patients pursue and achieve an active life, led to the creation of the annual race. The Alive to Strive annual race benefits people affected by kidney disease through their Active Living Grant Program. Alive to Strive is based in Ottawa and is committed to education, prevention and awareness of kidney disease. In the last nine years, Alive to Strive has raised over $30,000 to support The Kidney Foundation’s programs and services in Eastern Ontario. There is still time to register and join in this year’s event. Learn more at alivetostive.ca.
q Milliken Mills Lion’s Supports The Kidney Foundation The Kidney Foundation was privileged to attend the Milliken Mills Lion’s Club 22nd annual fundraising Gala in November as the grateful recipients of their $10,000 gift. We look forward to a long-standing partnership with their members and community. p Thank You The Kidney Foundation was the grateful recipient of a $10,000 donation from the Canada Chinese Computer Association presented at their February 6 Gala Dinner. Ontario Branch Board Member, Alan Hui and Senior Manager, Major & Mid Level Giving, Andrea Rennie were on hand to accept the donation on behalf of The Kidney Foundation.
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COMMUNITY HIGHLIGHTS 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/ newsletters.
p Good Deeds Cup The Seaway Valley Major AA Rapids from Cornwall, Ontario took part in the Chevrolet Good Deeds Cup. The cup challenge each year is about making the community a better place, and the Rapids chose to raise awareness about live kidney donation. The team was inspired by Pete Seguin’s story. He’s the father of one of the team’s goalies, Eli Seguin. The team created posters and bumper stickers to help raise awareness, because Pete is on the waiting list for a kidney transplant. The team also raised more than $1,500 for The Kidney Foundation of Canada, to help support kidney patients and research. While the team didn’t win the Good Deeds Cup, their efforts make them MVPs of The Kidney Foundation. The boys have learned that dialysis can help a person who is suffering from kidney failure, but that ultimately, a kidney transplant is what is needed to help the person on a more permanent basis. The team’s message is simple—they want people to consider organ donation and learn more about living donation to help Pete and others who need the gift of life.
Notice Ontario Branch Annual General Meeting Saturday, April 25, 2020 10:30am, Mississauga For further information contact Carol Kostoff 1.800.387.4474 ext. 4972 THIS WILL BE A VIRTUAL MEETING
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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 Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 Spring 2020 / Kidney Living / 23
There’s no greater support than a loved one’s embrace. Get behind the one you love by participating in Kidney Walk.
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