Living
KIDNEY Fall 2021 • Volume 14 • Number 2 • kidney.ca
A PUBLICATION OF THE ONTARIO BRANCH
Diabetes and Kidney Disease
what’s inside
FALL 2021
FOUNDATION/FUNDRAISING 3
Support on Many Levels
11 World Kidney Day 2022 21 On the Air 22 A Virtual Success!
SERVICES AND SUPPORT/RENAL PROFESSIONALS 10 We’re in This Together 12 Paraish Misra 14 Caring for Caregivers 15 Connecting Parents
PERSONAL STORIES 4 Brenda’s Story 16 Kristin’s Story
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DIABETES 5 6 8 9
End Diabetic Kidney Disease Diabetes and Kidney Disease Alley’s Story Lisa’s Story
FOOD & NUTRITION 17 All-purpose Salt Substitute 18 What’s for Dinner?
12 Cover: Alley recovers at home after her kidney and pancreas transplant. Read her story on page 8. Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses to Trish Reynolds, Director, Marketing & Communications, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1 email: ontario@kidney.ca Phone: 1-800-387-4474
©2021 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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EDITORIAL
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 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 shukyu.fong@kidney.ca Durham Region 1-800-387-4474 Eastern Ontario 1-800-387-4474 •613-724-9953 jennifer.heale@kidney.ca Hamilton & District 1-800-387-4474 ontario@kidney.ca Kingston 1-800-387-4474 • 613-542-2121 katie.kyte@kidney.ca London & District 1-800-387-4474 • 519-950-5362 rizwana.ramzanali@kidney.ca Niagara & District 1-800-387-4474 ontario@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 1-800-387-4474 • 705-365-7492 timmins.president@kidney.ca Waterloo – Wellington & District 1-800-387-4474 tracey.babineau@kidney.ca Windsor & District 519-977-9211 ontario@kidney.ca
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Support on Many Levels
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iabetes is the leading cause of kidney disease in Canada with nearly four out of ten new dialysis patients living with diabetes. Management of both diabetes and kidney disease is a complex balancing act for many patients. 2021 marks the 100th anniversary of the discovery of insulin by Frederick Banting and J.J.R. Macleod at the University of Toronto. To honour this historic discovery, The Kidney Foundation in collaboration with the CIHR-Institute of Nutrition, Metabolism and Diabetes have launched a new research campaign with a focus to accelerate research into diabetic kidney disease. Check out the story on page 5 to learn more about the campaign. We’re highlighting the stories of three amazing women who’ve shared their experience about living well with kidney disease and diabetes. Registered nurse, Andrea Norgate provides some practical tips to consider for those who are balancing living with both diabetes and chronic kidney disease. This issue also shines a light on Kidney Connect Peer Support. The peer support program continues to grow with new groups being launched to fulfill the needs of our community. Group facilitators, Andrew and David, share how important it is for caregivers to also have a safe space to talk with other caregivers. Parents of children living with kidney disease need support too, so we’re pleased to launch a new support group to support their unique needs. Check out page 15 to learn more about this new group and how you can join. While the stresses of the pandemic continue to have a lasting impact, our team of volunteers and employees continues to do all that we can to support Canadians affected by kidney disease. Our kidney community continues to respond, and we’ve witnessed your unwavering support. The Kidney Walk surpassed the 2021 goal, raising more than $840,000 to support crucial programs and research. Thank you to the many participants and donors for making the event such a tremendous success! Trish Reynolds
Fall 2021 / Kidney Living / 3
PERSONAL STORY
Brenda’s Story From diagnosis to determination
by Brenda (with Heidi Westfield)
Brenda, 64, has learned to stay positive while living with diabetic kidney disease.
q Brenda
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I didn’t know anything about kidney disease before it happened to me.
octors discovered that I had type 1 diabetes when I was 24 years old, which is kind of an unusual age to be diagnosed. I was getting a lot of headaches and feeling very tired. I was able to control the disease with diet and exercise at first. Then, two years later, I got pregnant and became insulin-dependent. After the diagnosis I tried to be very careful about my health and follow the rules. Once in a while, though, I would stick my head in the sand, not take my insulin and eat whatever I wanted. It was probably during one of those times that my kidneys started to get damaged. There were no signs of kidney problems at first. It was only later, when I was in my 40s, that my legs started to swell. At one point I was organizing a big fundraising event and got deathly sick afterwards. My family doctor said I had pneumonia, and sent me home to rest. The next day I was rushed to hospital in an ambulance. I was in kidney failure. I was flabbergasted. I didn’t see it coming. I went on dialysis and about four years later received a kidney and pancreas transplant. The surgery fixed the kidney disease and also eliminated the diabetes. It was remarkable! While there were some side effects to the surgery, it felt like I had my life back. I lost the transplant a number of years ago, and that was tough. My family and friends provide a lot of support, but there are still days when I find it hard to get out of bed. Meditation helps a lot. I find it immensely calming and it turns around how I think. It helps me focus on what I am grateful for and stay positive. I am sick a lot, but have a lot to be thankful for and a lot that I can do. I am a long-time volunteer and was the Ambassador for my local Kidney Walk this year. I like to volunteer. It doesn’t take much and it costs nothing to help other people. I didn’t know anything about kidney disease before it happened to me. Now I know that it impacts so many people and it is not well understood. If I can help raise awareness about kidney disease and organ donation, that is my goal. We all want to leave a mark of some kind and I think this is mine. I want to make that difference.
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DIABETES DIABETES
End Diabetic Kidney Disease Building on past success. Creating hope. Ensuring a better future.
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n 1921, Canadian researchers were at the centre of one of the world’s most important medical breakthroughs. The discovery of insulin a century ago revolutionized the treatment of diabetes and has saved millions of lives. Some called it a medical miracle. We call it hard work by dedicated researchers. Frederick Banting and J.J.R. Macleod, of the University of Toronto, were awarded a Nobel Prize for their work. Today we are honoring the historic discovery of insulin by creating a new and promising partnership. The Kidney Foundation of Canada is collaborating with the CIHR Institute of Nutrition, Metabolism and Diabetes (CIHR-INMD) to accelerate research into diabetic kidney disease. The Kidney Foundation of Canada and CIHR will each contribute one million dollars over the next five years to bring together a world-class team of medical researchers. They will investigate new ways of preventing diabetic kidney disease and improving the outcomes of those living with this life-threatening condition. Too many Canadians have their lives cut short by diabetic kidney disease.
The rapid rise in diabetes is leading to an alarming increase in the number of Canadians living with kidney disease and kidney failure. Diabetes is the leading cause of kidney disease; 36 percent of Canadians starting dialysis or requiring a transplant had diabetes as the main cause of their kidney failure. It is vitally important that we work to break this cycle. This year marks 100 years since the discovery of insulin. It’s time to find the next great discovery. It’s time for another medical miracle. Together, we can end diabetic kidney disease. Learn more about this campaign at Kidney.ca/EDKD Better treatment is needed • In the past 20 years the number of Canadians diagnosed with diabetes has doubled. • Diabetes is the leading cause of kidney failure in Canada. • At least 11 million Canadians live with prediabetes or diabetes. • Nearly four out of 10 new dialysis patients also have diabetes.
S tay connected
Our e-newsletters help you stay connected with what is happening in the kidney community. Receive expert insights and health information, plus discover new ways to get involved by learning what is being done to raise awareness and help reduce the burden of kidney disease. Sign up today at https://kidney.ca/Newsletters or email ontario@kidney.ca. kidney.ca
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DIABETES
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Diabetes and Kidney Disease Knowledge is power
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by Andrea Norgate, Clinical Transplant Coordinator, Ajmera Transplant Centre, University Health Network
The kidney is an amazing organ. It removes waste from our blood through filters, and this waste becomes part of our urine. Protein and red blood cells are too big to pass through a healthy kidney’s filtering system and they stay in the blood where they belong. 6 / Kidney Living / Fall 2021
iabetes causes our body’s glucose to fluctuate and at times, when the glucose is high, our kidneys work extra hard to filter our blood. This extra work, over time, can cause damage to the kidneys. Keeping your glucose in a normal range prevents the kidneys from working too hard. It is also one of the biggest challenges that people with diabetes face. Glucose control can be difficult and frustrating; you are not alone. Here are some key take away points: It’s not your fault Glucose control is difficult, and yes, sometimes impossible. Having diabetes, whether type 1 or type 2, is a job in itself (with no pay!). There’s always room for improvement and at times, you can feel responsible for your kidney disease. Give yourself a break. All we can do is try. Reach out to peers, get yourself kidney.ca
DIABETES some support. You’ll find you are not alone and everyone is just trying their best. Recognize that living with diabetes and kidney disease can be difficult but you’re doing it! Pat yourself on the back for being pro-active, you’re doing a great job.
foods. In short, low glycemic foods are the best choice and help control big fluctuations in glucose. Less cake, cookies and pop, more whole grains, oatmeal and beans. The list of low glycemic foods is endless and the internet can provide fantastic recipes that cater to healthy living.
Glucose comes in many forms Many people are under the impression that candy is our main source of sugar. If only it were that easy! Carbohydrates (eg, bread, pasta, rice, cereal, potatoes) convert into glucose and can increase your blood sugar. Carbohydrates are the main source of energy for our tissues and organs when converted into glucose. Too much glucose can be harmful to the organs, especially the kidneys. Keeping our carbohydrate intake limited to complex (or low glycemic index) foods will help control glucose in the blood.
Celebrate yourself Having kidney disease and diabetes can be overwhelming. One way to combat this feeling is to get moving. A simple walk outside can do wonders for the spirit. Walk the dog, walk with a friend or walk with a podcast. Walking can decrease fatigue and prevent muscle weakness and wasting. It’s good for the soul and can help keep glucose levels in check. Let’s celebrate ourselves by doing something good for our body! In short, there are many ways to protect the kidneys. Controlling glucose levels is a great start combined with a normal blood pressure, a healthy weight, a good diet, and daily exercise. Reach out to The Kidney Foundation as their support system is second to none!
Carbohydrates – not all bad Carbohydrates come in high and low glycemic indexes. You can consult with your dietitian to get a list of low glycemic
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Fall 2021 / Kidney Living / 7
DIABETES
Alley’s Story Alley thought her diabetes was under control, until her kidneys failed
by Alley (with Heidi Westfield)
Hope is so important.
q Alley
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was diagnosed with type 1 diabetes when I was five years old, on my mother’s birthday. It has been quite a journey since then. I was lucky to have an exceptionally supportive family who didn’t treat diabetes as if it were this sensitive thing. It was a part of my life, and we were going to find ways to deal with it. I had a normal childhood, and was open with my friends and family about having diabetes. At one point, I became the spokesperson for the Juvenile Diabetes Research Foundation, quite literally the poster child for type 1 diabetes. Complications from the disease were talked about, but I never thought they would happen to me. I believed I had everything under control. What I wasn’t aware of, was that diabetes was slowly eating away at my kidneys. Looking back, there were hints of the problems to come. My ankles started to swell, but I thought it was a side effect of working on the 66th floor of an office tower and being on an airplane every month. In November 2018, I was on a call with a friend when I started having trouble breathing. I called an ambulance, and doctors told me in hospital that my blood pressure had spiked to dangerous levels. I was on the brink of having a heart attack and my kidneys were failing. The news was devastating and I was scared. I didn’t know anyone in their early 30s who had kidney failure, let alone was going to need a dual organ transplant. I started dialysis, and met a community of people who were going through a similar situation and holding onto hope. And I think hope is the undercurrent of all of this. Hope is so important. I had three calls to come into the hospital for a transplant, and each time there was an issue and the surgery couldn’t go ahead. It hits you in the gut. Then, in May I got another call, and I had a better feeling about it. I got the sense that this time it would work out. In May, exactly 30 years after I was first diagnosed with type 1 diabetes, I received a kidney and pancreas transplant. Everything went well and I am now recovering at home. The surgery has saved my life. I have a new sense of freedom and am looking forward to the years ahead. I think about my donor every single day, and I am incredibly thankful and grateful for their gift.
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DIABETES
Lisa’s Story Positive outlook helps Lisa balance diabetes and kidney disease
by Lisa (with Heidi Westfield)
Lisa is a long-time Kidney Foundation volunteer who has helped facilitate a number of peer support groups in Ontario. She lives with diabetes and kidney disease, and is a cancer survivor.
q Lisa (right), with her parents Josie and Hal
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was diagnosed with type 1 diabetes when I was four years old. I remember doctors saying there could be complications, but at the time I didn’t know much about the connection between diabetes and kidney disease. That connection became real to me as a teenager. I was learning to drive and realized I couldn’t see properly out of my left eye. It turns out that it was a complication of diabetes, one of many to come. Back then, kidney disease wasn’t in the news as much as it is now. I was basically told, you can either get a family member to donate a kidney or you can go on dialysis. My mother and sister came forward to donate a kidney and they were both matches. I received a transplant from my mother in December 1995. Unfortunately, it did not work out, so I began peritoneal dialysis. I had a second kidney transplant in May 1997.Unfortunately, my pancreas transplant failed, so I am currently taking insulin for diabetes. I’m happy to say that my kidney is 24 years old! Having both diabetes and kidney disease is a balancing act. Sometimes the diets contradict each other. My advice is to know your bloodwork and balance what is best for you with your healthcare team. I started volunteering with The Kidney Foundation soon after my diagnosis, and began offering one-on-one peer support. About six years ago I was approached by the Programs department to be a facilitator for a new peer support group in Toronto, and it worked out very well. Today the number of peer support groups has grown and participants from across Canada take part. The groups do not offer medical advice. Having said that, it is incredible what you can learn from others going through similar experiences. Even for me, being a facilitator and a kidney patient for so long, it is amazing what I pick up at the meetings. My parents are very positive people and they brought me up to look at the brighter side of things. My husband is also very supportive. I believe a positive outlook has played a big role in helping me stay on track. I don’t spend much time worrying about tomorrow. I live each day to the fullest. Fall 2021 / Kidney Living / 9
SERVICESAND ANDSUPPORT SUPPORT SERVICES
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We’re in This Together
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Dealing with stress during these difficult times
by Galo Meliton, RN C Neph (C), Sharon Lee, RSW
Reprinted with permission from the Transplant Digest, St. Michael’s Hospital.
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here is no doubt that COVID- 19 has changed our lives. We hear the fear in your collective voices and how you have and continue to endure more stress than ever imagined. When situations are unpredictable, this can naturally lead us to worry and feel anxious. There are things you can do individually and collectively to cope and support one another. Know the facts Using reliable sources of information ensures that what you do learn is fact, not fear-based. Use this knowledge to develop personal plans of action for a range of possible scenarios that could affect you both socially and financially. This will improve your ability to make difficult decisions and take action when necessary. kidney.ca
SERVICES AND SUPPORT Improve your sense of control Has there been another time in your life when you felt things were out of control? Increase positive coping behaviours that have worked for you in the past. Be mindful of what has and has NOT worked. Be receptive to new coping behaviours (i.e. meditation, deep breathing, exercise, etc). Find the self-care practice that works for you. Remember that building resiliency in times of uncertainty is learned. Improve your ability to endure Are you frustrated and exhausted trying to change something you are not in control of? Worry can be both helpful and unhelpful. Rather than imagining the worst case scenario, also known as “catastrophising,” look at problems that need your attention right now. Focus on what you can accomplish and change. In life-altering times, our frame of reference shifts. What you may have described as a “good day” a couple of months ago will change to meet the reality of your current situation. Most importantly,
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practice self-compassion by looking for ways to be kind and patient to yourself, and to those around you. Stay connected In addition to finding activities that give you a sense of achievement and that you can do just for pleasure, we need closeness/connection with others. Stay connected with family and friends via phone, email, text messaging, video call and even snail mail. More than ever before, having someone you can share thoughts, feelings and problem solve with becomes necessary. Seek support from those who are in similar circumstances. The Kidney Foundation continues to hold support group meetings for patients and family members. Learn more at kidney.ca/supportmeetings. Seek help The psychological weight of living in unprecedented times may become overwhelming. The transplant team is also here to help provide support, community resource information and referral.
The Kidney Foundation of Canada, Ontario Branch 2021 - 2022 Board of Directors Dr. Norman Muirhead, President Richard Bernreiter Mauro Burri Charles Cook Chris Costanza Elizabeth Giancinti Joanne Hagger-Perritt Alan Hui Craig Kerr, Past President Michael Mastronardi Teresa Roberts Mary-Pat Shaw Marlene Smith Sonya Solman Susan Tkachuk Terry Young Executive Director Anthony Tirone Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003
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RENAL PROFESSIONALS
Paraish Misra A Kidney Living Research Profile
Where are you from? Where did you study? I was born in Montreal, and I completed my medical school and residency in Internal Medicine at McGill university. I then came to Toronto to pursue my specialization in Nephrology. How did you become interested in nephrology? In my early university days, I was fascinated by how elegantly the healthy kidney could regulate the salts and acids in the blood. During my residency in Internal Medicine, I was exposed to the breadth of diseases caused by the dysfunctional kidney. I realized how kidney disease often extended into other parts of patients’ bodies and lives, and that caring for patients with kidney disease required a consideration of multiple different aspects of their health. I liked how in Nephrology, I could specialize in the kidney without leaving the rest of medicine behind.
p Paraish Misra
What are you currently researching? Currently, I am studying how we can use stem cells to build organs for transplantation. Diabetes is the leading cause of kidney disease in Canada, and pancreas transplantation is an effective treatment for diabetes, but there are not enough pancreases available for all patients who could benefit from them. I am working on a way to build a pancreas from stem cells to treat diabetes. I am using special stem cells from which proteins called “HLA” have been removed. These HLA proteins are often what cause transplanted organs to be rejected and fail, requiring that patients take anti-rejection medications, which have many side effects. I hope that organs I build with these HLA-deficient stem cells will survive and function inside patients without requiring the use of anti-rejection medications. This will allow more patients to access this therapy with fewer side effects, and hopefully lead to better health and quality of life for patients with diabetes. How will your research impact the treatment of kidney patients? What is the long term goal? Since diabetes is a leading cause of kidney disease in Canada, this type of therapy will impact many Canadians that have chronic kidney
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RENAL PROFESSIONALS disease. I hope that providing patients with this new treatment will help prevent or control kidney disease caused by diabetes. In future, we may also be able to use these special stem cells to build kidneys that do not get rejected after being transplanted into patients with kidney disease, potentially providing a safer alternative to kidney transplantation.
not typically receive, which was very daunting at first. The Kidney Foundation’s grant gave me the support to receive the training I needed to pursue this unconventional career path. I am very fortunate to be able to work towards developing novel treatments for patients with diabetes and kidney disease, and this would not be possible without The Kidney Foundation.
What does the grant support from The Kidney Foundation mean to you? The type of research I perform requires training that Nephrologists do
What word would you use to describe the kidney research community in Canada? Why? The word would undoubtedly be “unified.” Though I am still in the early
Kidney ActiveConnect Living for PeerNow Support offered virtually!
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phase of my research career, I have been fortunate to witness how closely connected Canadian kidney researchers are, which allows them to build off each other’s strengths and achieve remarkable things. I believe that efforts from The Kidney Foundation such as the KRESCENT research training program are essential to maintaining this synergy, making Canada a unique place to perform research on kidney disease.
Life
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FREE! Facilitated by volunteers who have lived experience with kidney disease. Group support meetings are held virtually; join the one that fits your schedule. Patients, family members and caregivers are welcome. One-on-one or online support is also available.
Learn more:
kidney.ca/supportmeetings or call 1 866 390 7337 kidney.ca
Fall 2021 / Kidney Living / 13
SERVICES AND SUPPORT
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Caring for Caregivers New caregivers support group launched in Ontario by Heidi Westfield
The Kidney Foundation of Canada has launched a caregivers support group in Ontario. The new online group meets once a month, and provides a forum for caregivers to connect and learn from each others’ experiences. It builds on the success of established patient-centered models, offering both emotional support and practical advice. Participants can either log in with their computer or join by phone.
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ndrew is one of the group’s facilitators and also a kidney donor. He took part in Canada’s Kidney Paired Donation Program, which enabled his wife to find a donor kidney in 2015. She was on home peritoneal dialysis for two years before becoming a transplant recipient. Andrew remembers some of the challenges around being a caregiver at that point: Tracking medications, getting to appointments on time, and preparing dialysis supplies. “When you start to provide care for someone, you can get so wrapped up in that role that you can forget about yourself,” he reflects. “Even though it is okay to go out on your own once in a while, you can feel an obligation to always be close by.” Based on his own experience, he knows there are a wide range of topics to cover at the meetings. One of his key goals is to develop a community where caregivers can have open conversations and offer each other support. David is also a group facilitator. His wife Bonnie was diagnosed with kidney failure a few years back and started peritoneal dialysis 18 months ago. “There is so much to learn,” David says. “You have to get over the initial shock and that sense of feeling overwhelmed. As a caregiver you are beside the patient, doing what you can to help out.” David and his wife were able to learn more about kidney disease and dialysis through The Kidney Foundation’s website and resource materials. They soon joined patient support meetings in Mississauga and Scarborough, and now David helps moderate the caregivers group. “There is a lot of value in being in a forum where you can share ideas and ask questions,” he notes. “It gives you the perspective and knowledge that we are not facing this situation alone but with kindred spirits. There is strength in community.” To learn more about The Kidney Foundation’s new Caregivers Support Group, visit kidney.ca/supportmeetings or call 1.866 390 7337. kidney.ca
SERVICES AND SUPPORT
Connecting Parents New peer support group for pediatric caregivers launches in January
by Heidi Westfield
Being the parent of a child living with kidney disease can be stressful, overwhelming and at times lonely. Sara Shrubsall understands just how difficult it can be. q Sara and Keanna
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“We can help each other navigate through this.”
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ara’s daughter Keanna started having health problems when she was just six years old, and by the age of eight was on dialysis. She lives with a rare kidney disease that doesn’t always respond to transplant surgery. Keanna’s second kidney transplant is working, but her donor kidney is damaged due to a persistent virus. The kidney is now functioning at about 20 percent. Sara has years of experience juggling hospital visits, doctors’ appointments and renal diets. She is one of two parents trained to be facilitators for a new peer support group set to launch in January. The Pediatric Parent and Caregivers Support Group will be held virtually, so participants can take part by video chat on their computer or dial in by phone. It will be open to anyone who is caring for pediatric renal patients in Ontario, and across Canada. “I don’t think caregivers of children with kidney disease have had a voice for a very long time. This group is very much needed so that parents and guardians don’t feel alone on this journey with their kids,” says Sadia Baig, Programs Coordinator with The Kidney Foundation of Canada. “The goal of this group is to connect families to one another since they have similar lived experiences, stories and journeys.” Once the group is up and running, the goal is to invite guest speakers like dietitians and social workers. While peer support groups do not provide medical advice, these experts can help answer questions and offer an educational component. “I think peer support is extremely important for caregivers,” Sadia reflects, noting that she grew up with kidney disease and has seen the burden it places on children and Fall 2021 / Kidney Living / 15
SERVICES AND SUPPORT
families. “This is a safe, confidential outlet where caregivers can connect with others going through similar experiences and not feel judged.” For Sara, the peer support sessions offer an opportunity to bounce around ideas with other parents and learn from each other. “While everyone lives their own journey, we share a special connection. We can help each other navigate through this.”
Find Out More To learn more or to join the Pediatric Parents and Caregivers Support Group in January till June 2022, please email ontario.programs@kidney.ca. Dates are as follows (all times are 6:30 - 8:00pm): Pediatric Caregivers Thursday January 13, 2022 Thursday February 10, 2022 Thursday March 10, 2022 Thursday April 14, 2022 Thursday May 12, 2022 Thursday June 9, 2022
Kristin’s Story Accessing peer support can bring hope, lessen isolation
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as told to Heidi Westfield
y daughter Lily was 7 years old when she was diagnosed with kidney disease. She had suffered from migraines and started to have swelling around her eyes. Lily saw six different healthcare professionals before they figured out what was wrong. She didn’t present with typical symptoms. A biopsy confirmed she had Focal Segmental Glomerulosclerosis (FSGS), and Lily had a kidney transplant. She is now post-transplant and living with recurrent FSGS. Lily’s life has completely changed. She can’t go to school and does virtual learning. She isn’t allowed to swim or do gymnastics or play on the trampoline. Because she is immunosuppressed, we can’t have anyone in our house who doesn’t live here. We already had a lot of restrictions before the Covid-19 pandemic, and now there are a hundred times more rules. I feel like all we do as parents is say “No.” When Lily got sick, I started to access peer support groups for FSGS in the United States and found them very helpful. Lily attended some too. When I heard about the new peer support group starting in Ontario, I thought it was a great idea. I will be one of the group’s two facilitators, when the meetings begin in January. I have seen first-hand how helpful peer support is for me and my family. The sessions are very informative and I have learned an incredible amount. These groups can provide peace of mind, hope, a sense of community and friendship. They also help lessen feelings of isolation.
t Kristin and her brother, Foster
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FOOD AND NUTRITION
Unsplash.com/MerveSehirliNasir
All-purpose Salt Substitute Diet Type Low Phosphorus | Low Potassium | Low Sodium Meal Type Marinades Adapted from St. Paul’s Hospital renal dietitian resources
Ingredients 1 Tbsp mustard powder 1 Tbsp garlic powder 1 Tbsp onion powder 1 Tbsp paprika 1.5 tsp black pepper 1 tsp basil 1 tsp thyme Directions In a bowl, combine all the ingredients and whisk gently to combine. Package the mixture in an airtight container until ready to use. The nutritional analysis is based on a 6 g serving, which is equivalent to approximately 1 tablespoon.
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FOOD AND NUTRITION FOOD AND NUTRITION
What’s for Dinner? Meal planning with the Kidney Community Kitchen
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by June Martin, Registered Dietician
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lanning your meals is a fantastic way to save time and money and reduce the number of last-minute trips to the grocery store. It will also help you avoid falling into the trap of buying convenience and fast foods. Using the Kidney Community Kitchen’s meal planning tool can ensure that you are meeting your nutritional needs and give you a great visual overview of your prepared menu(s). Not sure what numbers you’re aiming for? Ask your dietitian for help. There are a few important things to keep in mind to make meal planning work for you! 1. Take stock! What’s in your pantry, fridge or freezer that’s not going to last? Maybe you have a head of cauliflower that you never got around to using or some eggs that are going to expire. Plan meals early in the week with these ingredients to avoid wasting food. But keep in mind—when in doubt, throw it out! 2. Start with protein. Often planning a meal around your protein is the easiest way to go. If chicken is on sale you might want to plan a couple of meals with it. The Kidney Community Kitchen’s cookbook can be a great resource for recipes using specific ingredients. Talk to your dietitian to find out how much protein you should aim for each day. 3. Cook once, eat twice! If you enjoy leftovers, plan meals that can serve as lunch for the rest of the week or supper for a couple days. If you do not like leftovers, look for recipes that can be easily repurposed. The Persian Chicken on the Kidney Community Kitchen’s website is not only great fresh off the grill, but also delicious thinly sliced in sandwiches the next day.
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FOOD AND NUTRITION
Meal Plan Week 2021-07-12 Monday Tuesday Wednesday Thursday Friday Saturday Sunday Daily Meal Plan for 2021-07-14 Breakfast
Lunch
Milk, fluid, skim (100 ml, [½ cup]) Bagel, cinnamon-raisin, toasted (1 mini bagel [6.4cm or 2½ dia]) Click to add an item
Baked eggs with Basil Pesto Calories: 308 Cal Carbohydrates: 7g Total Fat: 22g Phosphorus: 332 mg
Nutrient Analysis Protein: 20 g Fibre: 1g Sodium: 295 mg Potassium: 409 mg
1157 kCal
1157 kCal
Protein
66 g
66 g
Cranberry juice, unsweetened (100 ml, [½ cup])
Carbohydrates
86 g
86 g
Tomato, red ripe, raw, year round average (100 ml, [½ cup] chopped or sliced) Click to add an item
Fibre
7g
7g
Total Fat
57 g
57 g
Snacks
Asian Eggplant Dip with Seared Peppercorn Steak Double boiled mashed potatoes
Carrot, baby, raw (85 g [3 oz]) Cheese, brie (100 ml [⅓ cup] melted) Cracker, 7 gram [20 g [½ oz])
Sodium
1293 mg
1293 mg
Phosphorus
1024 mg
1024 mg
Potassium
1823 mg
1823 mg
Click to add an item
4. Look at your schedule. Plan easy meals or leftovers for days where you have medical appointments or dialysis. 5. Read the recipes carefully. Is it going to make the right amount for you? Will you have leftovers of a specific ingredient? If you’re buying tortillas for the Tortilla Pizzas with Roasted Red Peppers and Shrimp, then maybe plan for Breakfast Burritos later in the week. 6. Plan for snacks. Consider setting aside an hour on the weekend to do some prep work. Prepare a batch of hard-boiled eggs for high protein snacks or a quick breakfast. These can be used as the basis for egg salad or to top a salad. Make a batch of healthy, kidney-friendly muffins or squares. 7. Be flexible. Sometimes our best intentions get sidetracked, so you may need to mix and match your meals for the week. 8. Make a list! Take time to jot down all the ingredients you don’t have on hand. Pay attention to how much you’ll need for any new recipes. Keep a running list of any pantry staples as your stock gets low. Aim to stick to your list at the grocery store. 9. Try a new recipe each week. It’s easy to get bored with the same things over and over. Meal planning is a great way to stay creative. kidney.ca
Weekly Nutrient Analysis
Calories
Dinner
Click to add an item
Daily Nutrient Analysis
10. Schedule your time wisely. Make meal planning part of your routine. Whether it’s Saturday morning over coffee or Tuesday evening on dialysis—find a time that works for you. How to use the meal planner 1. Create a membership account. While you don’t need an account to use the meal planner, you will not be able to print or save your plans without one. To request an account, visit The Kidney Community Kitchen website at www.kidneycommunitykitchen.ca. 2. Browse the recipes. With an account, you can choose your favourites by clicking on the heart icon. These recipes will be linked to your meal planner account. 3. Sort the recipes. You can display recipes by Diet Type and Meal Type, or simply scroll through the virtual cookbook. 4. Take notes. Review the nutrient analysis and serving size to ensure that they meet your dietary needs. 5. Start planning. Watch the video, How to Use the Kidney Community Kitchen Meal Planner. Find it on the kidneycommunitykitchen website under videos. Fall 2021 / Kidney Living / 19
FOOD AND NUTRITION
Just the Facts
I
Eating guidelines for diabetes and chronic kidney disease fact sheet
f you have both diabetes and chronic kidney disease (CKD), it may seem that the diabetes and kidney diets don’t fit well together. However, with careful planning, you can follow your kidney diet and still control your blood sugar. Controlling your blood sugar is an important first step to slowing down the progression of kidney disease. It will also help prevent or minimize other complications of diabetes such as eye problems or nerve problems and help control your thirst. Controlling or preventing high blood pressure is another critical part of your care. Avoid salt and high salt foods, and take your blood pressure medication as ordered to keep your blood pressure in check. Having diabetes and CKD puts you at a higher risk for heart disease. Choose heart-healthy fats, include regular activity and control your weight to lower your risk for heart attack. Finally, eating a moderate amount of protein is another change you can make to reduce the workload of your kidneys. If you are on dialysis, however, you will need to eat extra protein since dialysis increases protein losses. Find the full fact sheet on the Kidney Community Kitchen website, or contact our Programs Team.
Keys to success for controlling your blood sugar 1. Eat three meals a day, no more than six hours apart. 2. Try to eat at regular times (even on days when you have dialysis). If you can’t eat a meal, make sure you have a snack that contains carbohydrates in place of your meal. 3. Eat the same amount of carbohydrate-containing foods at each meal. Carbohydrate-containing foods break down to sugar when eaten and include grains or starches, fruits, milk products and some vegetables. 4. Avoid simple sugars and sweets such as sugar, regular pop (soda, soft drinks), fruit juices, sweet desserts, candies, jam and honey. Try using sugar substitutes in your recipes. The material contained on this fact sheet does not constitute medical advice and is intended for informational purposes only. No one associated with The Kidney Foundation of Canada will answer medical questions via email. Please consult a healthcare professional for specific treatment recommendations.
RECIPES & INFO TO HELP YOU MANAGE YOUR RENAL DIET
KIDNEYCOMMUNITYKITCHEN.CA 20 / Kidney Living / Fall 2021
kidney.ca
COMMUNITY COMMUNITY HIGHLIGHTS HIGHLIGHTS
On the Air The Chinese Renal Association raises awareness and support
T
he Kidney Foundation’s Chinese Renal Association held its first Radiothon on Sing Tao A1 Chinese Radio on Thursday, October 14. The all-day event invited listeners to hear personal stories from kidney patients, physicians, allied health professionals and volunteers throughout the day while raising funds to support crucial programs and services such as short term financial assistance. “The radiothon was an important opportunity to share kidney health information with our Chinese community and support the Foundation’s short-term financial assistance program,” said Alan Hui, Chair of The Chinese Renal Association. “After months of planning, we were so thrilled to raise over $125,000, surpassing all of our goals,” added Hui. The Chinese Renal Association is a volunteer-led local Chinese Chapter started by patients and nurses who felt education, information and support needed to be more readily available to Chinese-speaking communities. Their many years of work resulted in the wealth of information
kidney.ca
Unsplash.com/MattBotsford
and resources to support Chinese Canadians who are affected by kidney disease. Benson Sy, a devoted member of the Chinese Renal Association, proposed this radiothon last winter as a new way to raise funds and awareness of kidney health in the Chinese community. Sadly, Benson passed away unexpectedly earlier this year, but his friends, family and fellow volunteers were committed to seeing this project through in his honour and ensuring that it was a success.
We would like to express our thanks to the many sponsors and donors who helped make this event such a success: Scarborough Nephrology Associates, iTalkBB, Ontario Print Factory, Greenfield Golf, East Asian Internal Support Network—Toronto Police Service and the Toronto Hong Kong Lion’s Club. Thank you to the many speakers who shared their expertise and personal journies with kidney disease and to the many volunteers for their time and dedication in organizing the event.
Fall 2021 / Kidney Living / 21
FUNDRAISING
A Virtual Success!
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Ontario Kidney Walk Raises Over $840,000
he kidney community stepped up with strength, hope and courage in communities across Ontario on September 26 and raised over $840,000 to invest in high-calibre research and crucial support programs. “We are truly overwhelmed by the amazing support of our kidney walkers and their many donors,” said Norman Muirhead, President of The Kidney Foundation’s Ontario Branch. “While we couldn’t gather in person again this year, the Kidney Walk spirit was strong! It was truly inspiring to see so many families, friends and partners in renal care show such tremendous support for their loved ones living with kidney disease,” he added. Through events like the Kidney Walk we bring kidney disease out of the shadows and into the spotlight. This year, we were fortunate to have Kidney Walk ambassadors share their stories with us, act as spokespeople and take a leadership role in fundraising. Thank you to Brian and Jay Armitage, Jessica Bailey, Ivicia Balaban, Rhonda Braun, Baljit Ghuman, Lisa and Mark Lambert, Marie Jose Legault-Coyle, Amol Kapoor, Christina Kenny, Brenda Maillet, Joel Robinet, Kiran Singh, Bev Walkling and Dianne Yeboah for your contributions to this year’s walk. The walks would not be possible without the commitment and dedication of our kidney community. Your continued support is inspiring. Thank you to national partner, Otsuka Canada Pharmaceutical Inc., national supporter Horizon and provincial media sponsor YESTV. The Kidney Walk was also supported by a grant from Janssen pharmaceuticals as well as many local and regional sponsors.
22 / Kidney Living / Fall 2021
kidney.ca
FUNDRAISING
kidney.ca
Fall 2021 / Kidney Living / 23
Photo Credit: iStock.com/Ridofranz
SAVE THE DATE: JANUARY 25 & 26, 2022
Virtual Patient Forum
Coping, Resilience and Well-Being
Registration Coming Soon! Be the first to know when registration opens.
Email: kidneyprograms@kidney.ca or visit kidney.ca/events
Canadian Publications Mail Agreement # 40011479
Postmaster: Please return undeliverable Canadian addresses to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1
