Living
KIDNEY
Spring 2022 • Volume 15 • Number 1 • kidney.ca
A PUBLICATION OF THE ONTARIO BRANCH
Connecting with a Community of Support
what’s inside SPRING 2022
FOUNDATION/FUNDRAISING 3
Making an Impact
8
And the Award Goes to...
15 A Lifetime of Service
SERVICES AND SUPPORT/RESEARCH 7
Transplant Connect Support Group
10 Patient Symposium 18 Lived Experiences
PERSONAL STORIES 12 Kerry’s Story 23 Shauna’s Story
4
LIFESTYLE/FOOD & NUTRITION 4 COVID-19 17 Snack Attack! 21 Ask Me Anything
ORGAN DONATION 9 Peer Support Groups 13 One for the Team
13 Cover: Larry and Francine. Read their story on page 9. Photo credit: Richard Dubois
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
©2022 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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15 kidney.ca
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 deanna.kulczycky@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 deanna.kulczycky@kidney.ca North Bay 1-800-387-4474 Northern Superior 807-624-2680 ontario@kidney.ca Sarnia-Lambton 519-344-3462 ontario@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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Making an Impact s we reflect on 2021, we can do so with a sense of accomplishment. We’ve highlighted below a few of the outstanding achievements of Kidney Foundation volunteers, donors and employees during what was another challenging year. We continue to show resilience in the face of the unknown, while providing vital programs and services. Our peer support program continued to see impressive growth by being nimble and embracing the use of technology. The financial burden of kidney disease continues to impact patients and demand for short term financial assistance was on the rise. So much has changed in the last two years, but the needs of patients and families have not. Thank you to our donors, volunteers and employees for making people living with kidney disease and their families a priority during difficult times. We look forward to your support in 2022 as we continue to display agility and resourcefulness in carrying out the Foundation’s goals. Check out our full Ontario Impact Report at www.kidney.ca/reports. Anthony Tirone, Executive Director, Ontario Branch
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LIFESTYLE LIFESTYLE
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COVID-19 Managing risk in the “new normal”
As we all adjust to life with COVID-19, there are still many unanswered questions. We are moving from a time when public health measures were in place to protect the masses and keep our communities as safe as possible to a time when individuals now need to make personal choices to assess their own risk and protect their personal health.
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or people living with kidney disease, there is still an increased risk for more severe consequences as a result of COVID-19 and as a result, the transition to a new normal may be different. The following Q&A has been compiled with information featured in the March 2022 Bridging the Knowledge Gap Patient Symposium, and a follow up interview with Infectious Diseases Specialist, Dr. Reena Lovinsky. Our thanks to: Vydia Nankoosingh, Manager, Infection Prevention and Control, Scarborough Health Network; Gail Burns, Program Director, Nephrology Program Halton Healthcare and Dr Reena Lovinsky, Infectious Diseases Specialist and Medical Director of Infection Prevention and Control, Scarborough Health Network for the information you’ve shared. It seems like many people are returning to “normal,” but I’m struggling to define what my new normal will look like? It’s normal to feel some anxiety and worry, and there is no right answer that fits everyone. People with conditions like kidney disease are more vulnerable to COVID, so it isn’t as simple to return to “normal.” It’s important for you to make decisions that are best for you and your personal situation. Talk to your family physician or care provider. They can help answer your questions and provide information, strategies and resources to help. I’m not vaccinated, and I have been fine so far. Do I need to get vaccinated now that restrictions are lifted? Now is an especially important time to get vaccinated. Community rates of COVID-19 are high across Canada and will likely increase as more people gather indoors, in crowded places with poor ventilation without masks. Your risk of exposure to someone with COVID-19 is quite high in the community and your best protection against COVID-19 is to get your full complement of COVID-19 vaccines including a booster dose.
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LIFESTYLE Many people were anxious to get their vaccines early in the pandemic, but now we have a lot more data about vaccine safety and effectiveness. Do you know that 11 billion doses of COVID-19 vaccines have been administered across the world? Recent studies in both Ontario and British Columbia have shown vaccine effectiveness (how well vaccines work in the real world) to be 90 percent protective against severe disease/ hospitalization from Omicron after a booster dose. It is normal to have questions about the COVID-19 vaccines since there is a lot of overwhelming information available. Scarborough Health Network has set up a VaxFacts Clinic to facilitate private one-on-one phone conversations with one of their COVID-19 vaccine expert physicians to have your specific concerns addressed. They can do telephone consultations in more than 200 languages and you can book an appointment online from anywhere in Canada at: https://www.shn.ca/ vaxfacts/
I am vaccinated. Is it safe to be out in public, or in crowded spaces? What can I do to protect myself? The best layer of protection is your full complement of COVID-19 vaccines, but we know lots of other ways to stay safe. The safest activities are outdoors. Anything outside and six feet away from someone else is completely safe. Ideally avoid crowded, indoor spaces with poor ventilation. If you need to go into an indoor space, especially a crowded space, you kidney.ca
can wear a mask for an extra layer of protection. A medical mask has a medical-grade viral filter and provides better protection than a cloth mask. You want to ensure that your mask fits well, so a well-fitted medical mask or a KN95 or N95 are all good options. Cleaning your hands with alcoholbased hand sanitizer is another great way to prevent infections, not just COVID-19. Always clean your hands before you eat, touch your mouth or your eyes. It is important to clean your hands before and after you touch a wound or catheter. Continue to maintain your “bubble” and socialize with others who you know share the same philosophy about vaccinations and protection. Monitor your health daily and adhere to public health measures for testing, isolation/quarantine. I’m immunocompromised. What can I do to stay safe? What should I avoid? Being immunocompromised means that you may not respond as well to only two doses of the COVID-19 vaccine. It is important that you get three doses of vaccine as your primary series as well as a booster shot. This is the best way to protect yourself from severe infection. We want to “shield” you as well from infection by having your household members and closest family and friends vaccinated so that they offer a second layer of protection for you. Friends and family should not visit you if they have any symptoms of COVID-19. You should avoid indoor, crowded spaces with poor ventilation and continue to wear a medical mask in public. Ideally, those who live with you should also continue to wear a medical mask in public indoor spaces as an added layer of protection. It is important that you go for PCR testing as soon as you have symptoms of COVID-19 to help make an early, accurate diagnosis and get early treatment. Immunocompromised patients are eligible for Paxlovid if
they develop COVID-19, which can help prevent severe infection if given early after symptom onset.
What type of mask should I be wearing? Using a face mask or respirator in indoor public settings is associated with lower odds of acquiring a COVID-19 infection. Wearing a respirator type mask (KN95 or N95) provides the best protection, followed by a surgical mask. It is important to wear a well-fitted mask, that fits as tightly to the face as possible. Cloth masks are not recommended for protection. Layering masks is not an effective strategy, they are meant to be worn on their own. How will I know I have COVID? The signs and symptoms seem to change with new variants. For most people, Omicron causes symptoms of an upper respiratory tract infection like the common cold. The most common symptom with Omicron is a sore throat. Other common symptoms include headache, muscle aches, extreme fatigue, cough, runny or stuffed nose, and feeling like you have a cold. People can have a fever or shortness of breath as well. Loss of sense of smell and taste is not common with Omicron. I want to travel. What tips can you share about travelling safely? Be informed, check the travel advisories at https://travel.gc.ca/travelling/advisories to gather information about the prevalence of COVID-19 in other countries. You may also choose Spring 2022 / Kidney Living / 5
LIFESTYLE to look at the World Health Organization website to see where COVID is more prevalent and locations that you should be avoid because of high rates of community transmission. When travelling, social distance as much as possible. For example, if flying, find a lounge at the airport that isn’t as busy, or choose a destination with a short flight so you won’t have to remove your mask during the flight. Follow the same strategies you use at home: wear a respirator style mask that offers the best protection, wash your hands frequently, maintain a distance between yourself and other travellers.
Do you think we will always “live with COVID”? The more we learn about COVID-19 the more we realize we don’t know. So, it’s impossible to predict the future. I wouldn’t be surprised if
COVID-19 remains present at some level in our communities forever. This is why it is important that everyone gets vaccinated, including children. The COVID-19 vaccines do not prevent transmission of infection and do not completely eliminate the possibility of mild disease in most people, so we can assume COVID-19 will be around to some degree. The hope is that we will vaccinate enough people to get to the point where we have very few people in the population that are susceptible to severe infection and hospitalizations.
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SERVICES AND SUPPORT
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Transplant Connect Support Group
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Supporting transplant recipients and living donors by Trish Reynolds
he Kidney Foundation has launched a new Transplant Connect group as part of their Kidney Connect Peer Support program offerings. The group provides support to post-transplant recipients and living donors. The reality is that a kidney transplant is a treatment, and there are still challenges and triumphs in living with a donor kidney. Transplant recipients have a unique experience with their medications, side effects, body changes and feelings about their future and how well their graft will work. “The group is very much needed and will complement our growing roster of peer support groups,” said
kidney.ca
Sadia Baig, Peer Support Coordinator with The Kidney Foundation. “There are a lot of complexities to living with a transplant. Everyone assumes you are back to ‘normal’ which isn’t always the case,” she added. This support group is a safe space with trained patient facilitators, who themselves are kidney transplant recipients, helping to support and guide a meaningful discussion with group participants. The goal is to invite guest speakers to help provide further information and expertise to support group participants. While peer support groups do not provide medical advice, these experts can help answer general questions and offer education to support the trans-
plant experience. The Kidney Foundation’s Peer Support program provides support for all patients and caregivers, no matter where they are in their journey with kidney disease. Group meetings, oneon-one support and online support through kidneyconnect.ca, provide a safe, confidential and welcoming space for people to talk about the unique challenges they face and connect with others who understand the reality of living with kidney disease. To learn more or to join the Transplant Connect Support Group or any of our other Peer Support Groups, email ontario.programs@kidney.ca or visit www.kidney.ca/supportmeetings.
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COMMUNITY HIGHLIGHTS
THE FOUNDATION OF KIDNEY CARE
And the Award Goes to…
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Ontario Impact Awards Recognize Unique Contributions to the Kidney Community
he Kidney Foundation’s Ontario Branch launched a new recognition program this year to formally celebrate individuals of all ages including volunteers, healthcare professionals, groups, organizations and employees across the province who have made significant and unique contributions that make us a stronger, more vibrant and effective organization. Our recognition committee called for nominations with a goal of recognizing those whose contributions demonstrated impact, leadership, innovation and creativity, inclusivity and collaboration. While long service is commendable, the Ontario Impact Awards are not dependent on duration of service but instead on the extent of the nominee’s contributions to the kidney community. Award recipients were recognized during a special virtual ceremony held during National Volunteer Week on Thursday, April 28, 2022. Congratulations to our award recipients whose efforts have made a change for the better and positively impacted our kidney community Mark and Lisa Lambert Mike Fleurie Emily Campbell Monika Dylewski Peter Yuen Radiothon Committee and Volunteers The Renal Social Workers at Trillium Health Partners: Gloria Mullin, Mary Mariano, Bobby Kaur, Kylie Katz and Anitaa Gregory Peer Support Facilitators: Lisa Huhn, Joseph Gallagher, Maureen Rush, Rosemary Lejeune, Carol Sallasvaara, Betty Seminowicz, Lori Vanwyk, Andrew Vanwyk, Bonnie Lilien, David Lilien, Ranjeev Sethi, Jatin Sudhir, Dan Slater, Nadia Khaiati, June Jones, Mauro Burri, Francine Girard-Griffith, Larry Griffith, Francois-Rene Dussault, Joel Robinet, and the late Karen McNamara Sadia Baig Julia Beljo
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kidney.ca
ORGAN DONATION
Peer Support Groups A welcoming space for kidney patients and caregivers
by Heidi Westfield
Larry thought he was in good health. Then, on a Friday night about seven years ago, his whole life changed. His doctor had run some medical tests, and the results showed his kidney function was just over 10 percent. The news came as a shock. q Larry and Francine
“I
had no idea my kidneys were failing,” Larry recalls. “I didn’t have any major symptoms. I was running around doing things and then I got a phone call that turned everything around.” Larry began hemodialysis sessions in hospital about a month later, and then switched to home peritoneal dialysis. The sudden transition from feeling healthy to being hooked up to machines was challenging. “There was so much to adapt to in so little time,” Francine remembers. “There was so much to learn, and we were feeling quite overwhelmed. It was a lot to take in.” In 2017, when Larry’s doctors suggested a kidney transplant, Francine did not hesitate. Two weeks before Christmas they learned they were a match. Larry was concerned at first, worried about his wife’s health, but the surgery was a success. Now the couple, who have both recovered from surgery, are giving back. They are facilitators with The Kidney Foundation’s peer support groups in the Ottawa area. The sessions used to be held in person, but due to the Covid-19 pandemic they are now held online. Francine and Larry are both involved in Christian ministry. They find their background hosting seminars and counselling couples, helps them better connect and help others at peer support meetings. “I love to encourage others, lift people up and give them hope. I want them to know they can do this with a supportive community around them,” Francine says. She has heard a lot of positive feedback from peer support group members, who say the sessions provide a safe space for caregivers and kidney patients. For Larry, it is an opportunity to share his experiences, and help others living through similar situations and challenges. “Everyone is different. I listen very carefully to what others in the group are going through, and I share what is going on with me,” he says. “I believe we are all part of a community, and I want to reach out and help others. If I can help just one other person, then it is worthwhile.”
For more information on Kidney Connect peer support group meetings, contact kidney.ca or call 1-866-390-7337.
kidney.ca
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SERVICES SERVICESAND ANDSUPPORT SUPPORT
Patient Symposium Bridging the knowledge gap to better kidney health
by Trish Reynolds
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he Kidney Foundation delivered a meaningful one-day virtual symposium on March 24 bringing together patients, care partners and healthcare professionals from across Ontario to share information and education on COVID-19, dialysis, transplantation and active living. “Our virtual symposium helped address some of the most pressing questions and concerns shared by our community” said Craig Lindsay, Senior Manager, Programs and Public Policy. “Leaders from our nephrology community and patient experts shared their knowledge and experience to support continued learning and growth with our community.” The day kicked off with a timely conversation about COVID-19 and Managing Risk in the New Normal. COVID has presented many challenges and increased risks to those living with chronic kidney disease. As restrictions and precautions change across Ontario, the “new normal” for those on dialysis or living with a transplant looks quite different. James Bellamy, Director of the Renal Program at Grand River Hospital, guided an important discussion with Gail Burns, Program Dikidney.ca
SERVICES AND SUPPORT rector, Nephrology Program at Halton Healthcare, and Vydia Nankoosingh, Manager, Infection Prevention and Control at Scarborough Health Network. The panelists shared information and ideas on how people can help manage their risk, protect their health, and live as full and active a life as safely as possible. (See page 4 for a Q&A developed from this session to answer some of your questions.) Patient expert, Dan Slater, moderated a discussion on Expectations vs. Reality: Identifying Challenges with Life After a Kidney Transplant. Dr. Joseph Kim, Director, Kidney Transplant Program, Ajmera Transplant
Centre and Dipika Munyal, In-patient Transplant Pharmacist, University Health Network joined the discussion around the challenges that come following a successful kidney transplant. Patient expert Maral Azimi added to the conversation by sharing her lived experience with a transplant. The session, Thriving vs Surviving: Life After a Diagnosis of Chronic Kidney Disease, was moderated by Nadia Khaiati, a patient expert on dialysis. Nadia skillfully guided a session featuring Ethan Holtzer, Director of Operations and Quality at Dialysis Management Clinics, and patient experts Alex Moore and Lynn Clark, as
they shared their experiences living with chronic disease, life on dialysis and how they live their best lives. Registered Kinesiologist, Monika Dylewski led an interactive session on Active Living, sharing information on the benefits of movement and mindfulness and the significant role movement plays in one’s kidney health journey. The sessions were recorded are available for viewing on-demand on our website at www.kidney.ca/ webinars.
Active Living for Life Now offered virtually!
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FREE exercise program designed for kidney patients • led by a registered kinesiologist • must have access to the internet and a device with a camera and • microphone • each session includes a warm-up, strengthening and balance exercises and cool down
Active Living for Life is generously supported by the Kazman Foundation in partnership with William Osler Health, Sheridan College and The Kidney Foundation.
Learn more:
kidney.ca/programs/activeliving kidney.ca
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PERSONAL STORY
Kerry’s Story A lifetime of challenges and victories
by Kerry Kijewski with Asha Smith
“I was born blind and up until about 11 years old. That’s all we thought it was...”
I
was legally blind from birth. While I still had some of my vision, it required glasses and larger text size for me to be able to see, but I could still identify shapes and colours. My brother was born blind as well, so I never felt alone in my experience. While it had its difficulties, I still lived my life as any kid did up until the age of 11. When I entered Grade 5 or 6, I started getting really ill. I was nauseous all the time, fatigued, and couldn’t concentrate. The symptoms just kept getting worse and worse. I went to get a blood test and we discovered my kidneys were failing and I had kidney disease. I had to go to a hospital every week for peritoneal dialysis before we learned how to do it at home. As my dialysis progressed, my eyes started having these blackouts. I lost
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Y•E•A•R•S ANNIVERSARY more and more of my vision, resulting in the removal of one of my eyes. It took away my ability to see colours. I loved to colour and draw but I couldn’t do that any longer. This really weighed down on me and my family at the time. But I found a passion for writing instead. When talk began of a transplant, I was very lucky that my father was tested as a match for me. I know that not every person can find a match that quickly and I am one of the lucky ones. I don’t take that for granted. When you’re 12—I mean really at any age—your parents, if they’re alive, they don’t want to see their own child going through health challenges. Throughout my kidney disease journey, they felt helpless to watch what was happening to me, but the transplant was a way they could help. I didn’t have to go on the waiting list, and it was kept in the family. Within a year after I started dialysis, I received a kidney from my dad, and my body accepted it. I was feeling better by the following year. Today, I’m 38 years of age and trying to help others who, like my-
self, are going through their own journey with kidney disease. I am an active volunteer with The Kidney Foundation’s Peer Support program. Listening to other people’s stories and sharing my experience with them really does help to give people hope. And I get a chance to hear so many people’s stories. I think it’s a great program. I also share my knowledge and experience with my brother in a podcast called Outlook on Radio Western. On the podcast we talk about kidney disease from the perspective of being blind, growing up as blind siblings as well as interviewing people about their own experiences, stories and outlooks. This year I’m celebrating the 25th anniversary of my transplant. I look back on all the stories I have heard about other people’s journeys with kidney failure, and it has helped me to grow. It has grown my empathy and my understanding of the world. I think it’s powerful to hear other people’s stories and to share my own. It really brings people together and helps form connections and to be honest, it feels good. kidney.ca
ORGAN DONATION
One for the Team NHL hockey mom donates kidney to long-time friend
by Heidi Westfield Below: Graham with his wife Pam and two grandchildren (Callum and Addisyn) and Bonnie at the local ice rink. Graham installed a special thank you message at centre ice in honour of Bonnie Below right: Bonnie and Graham in hospital
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B
efore his transplant, it was a struggle for Graham Nesbitt to do everyday tasks. He felt weak and didn’t have much endurance. Even walking his son’s dog was a challenge that would leave him out of breath: “I would have to get the dog to drag me back,” he recalls. Now, a year after receiving a kidney from his friend Bonnie O’Reilly, his health has improved dramatically. “I feel terrific,” the retired hockey arena manager says. “It has given life back to me, it is just incredible. Now I can outwalk the dog!” Graham was diagnosed with IgA nephropathy more than a decade ago and learned he would need a kidney transplant in 2019. Once word got out in his small Ontario community, a number of people volunteered to be donors, including Bonnie. The two have known each other for decades. Graham would open the local arena before school started, so Bonnie’s children and other neighbourhood kids could have some extra ice time. He would do the same on “snow days” when school was closed. Those sessions at the rink helped Bonnie’s sons develop as players, which proved to be a start-
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ORGAN DONATION ing point for their careers in hockey. Her son Ryan O’Reilly is the captain of the St. Louis Blues in the NHL, and her son Cal plays for the Lehigh Valley Phantoms in the American Hockey League. Bonnie says she didn’t know much about kidney disease at first, so she did some research on kidney transplants and donor outcomes. She realized that because she had no medical problems she might be a suitable candidate even though she was coming up to 60 years old. “I was in pretty good health and wanted to help Graham if I could,” Bonnie says. “He helped my kids without asking for anything back and I had
an opportunity to return the favour. So, I threw my hat in the ring.” Graham had other potential donors, so at first it looked like Bonnie’s offer would not be necessary. But those donors fell through. Doctors then turned to Bonnie. She was a match, and the kidney transplant took place in March, 2021. Bonnie remembers chatting with Graham as they lay side-by-side on hospital beds before going in for surgery. “I wasn’t scared. In fact I was kind of excited,” Bonnie remembers. “I wasn’t frightened of the process. The hospital was remarkable, and everybody was very positive and professional. I knew I was in good hands.”
Kidney ActiveConnect Living for PeerNow Support offered virtually!
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The transplant was a success. Today Bonnie is back to the health she enjoyed before surgery, playing pickle ball, basketball and running. As for Graham, he is incredibly grateful for this gift of life from his long-time friend. “A kidney donation has brought life back to me and my family. It has given me a second chance. I look at it as a miracle. To have Bonnie be the perfect donor, I am a blessed guy.” Register your wishes to be an organ donor and talk to your family about your wishes. Visit www.beadonor.ca/ kidneyfoundationofcanada
Life
• • • •
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 14 / Kidney Living / Spring 2022
kidney.ca
THE FOUNDATION OF KIDNEY CARE
A Lifetime of Service A volunteer experience turned into a career
by Trish Reynolds
Elaine Hayter accompanied her mom, May, to a Kidney Foundation volunteer celebration back in 1986, never imagining how that one moment in time, would profoundly shape her life.
q The Hayter family Photo credit: Lorrie Williams
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t was local volunteer recognition event,” Elaine recalls. “Mom had kidney disease and was on dialysis at the time. She was a volunteer with the local chapter of The Kidney Foundation. She invited me to join her at the volunteer awards ceremony, and the rest as they say, is history.” It wasn’t long after that first introduction to the Foundation that Elaine was recruited to volunteer. She joined the Board of Directors and later became the VP of Fundraising. Those were the days of the March Drive canvass and the Fall Campaign peanut and candy drive. Fundraising and volunteering came naturally to Elaine. She had years of experience managing a nursery school which often included fundraising with families and organizing events. Five years later, in 1991, when the Chapter Board determined it needed a dedicated staff person, Elaine officially began her career with The Kidney Foundation. Now over 30 years later, with retirement on the horizon in June, she looks back on her journey. Kidney disease has had a profound impact on Elaine and her family with multiple generations impacted by a hereditary form of kidney disease. Elaine herself was diagnosed back in 1981 and started dialysis for the first time in 1986. “My grandfather passed in his 30s from kidney disease; my mom, my uncle, two of my sisters, my brother, my daughter and many cousins have all been affected by kidney disease,” said Elaine. Back in 1986 when Elaine was first on dialysis, the only option available in Sarnia was the self-care unit. Patients travelled to the regional centre in London for primary care. They were trained in London and they could move to Sarnia if space was available and only if they could manage their dialysis themselves. “When I look back on some of the biggest changes, I think one of our many accomplishments was working with Bluewater Health to make sure the new hospital had a dialysis unit when it opened in 2010.” Elaine has been blessed with two kidney transplants, and she is currently back on dialysis. She is an outspoken advocate for the impact of organ donation and a driving force in advocating for those living with kidney disease. There is strength in numbers, and community support in Sarnia is strong, thanks to the many relationships that Elaine has forged over the years. “I think being able to pull people together for a common goal, whether it is committee work for an event, or another activity is Spring 2022 / Kidney Living / 15
THE FOUNDATION OF KIDNEY CARE so valuable,” said Elaine. Whether it was for walks, golf, Christmas parties or even pasta fest, Elaine has always been keen to bring together volunteer committees who work hard to meet the local goals. Without missing a beat, Elaine is quick to share how much fun working on the Celebrity Men event has been. “Inviting people who have never been involved to participate in such a fun event, and contribute to our success, is amazing. So many of the models have never been a part of any Kidney Foundation event and through their volunteer contributions they become part of our kidney family,” she added. “Working with our volunteers has certainly been a highlight of my time here at The Foundation,” said Elaine. “I stay positive and energized by feeding off the energy of our volunteers and including more than a little fun in everything we do.” With retirement on the horizon, one might think Elaine will have time to put her feet up. Those that know her well, know that it simply means she has more time to do other things. You will likely find Elaine out on the golf course or hanging at one of her favourite lunch spots. “I honestly can’t say enough about the many friendships I’ve made over the years; I’ve worked with some great people, met some incredible patients, had a lot of laughs.” “My husband John, my girls Joanna, Sarah and Nikki—not to mention so many of their friends—have stepped up to help at every event. They’ve really been so supportive, and I couldn’t have done it without them.”
p Elaine Hayter Photo credit: Lorrie Williams
RECIPES & INFO TO HELP YOU MANAGE YOUR RENAL DIET
KIDNEYCOMMUNITYKITCHEN.CA 16 / Kidney Living / Spring 2022
kidney.ca
FOOD FOOD AND AND NUTRITION NUTRITION
Snack Attack! Guilt-free indulgence
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submitted by Hanna Kim, Dietetics Student and Dani Renouf, RD MSC, CDE
nacking is such an important part of a healthy diet, and especially valuable when you are balancing chronic health conditions such as kidney disease and diabetes. Often people are uncertain of what to choose for snacks, and worry that snacking will lead to undesirable weight gain. However, snacking can actually help improve nutrition status, balance blood sugars and result in better portion control at meals. How do you create a snack with simple math? Follow these easy steps. The Snack Formula: [fruits/vegetables] + OR [starch] + [protein] = a nutritious snack! From the food groups, choose 1-2 options from each column and mix and match as desired!
kidney.ca
Fruits and Vegetables
Starches
Fruit (size of tennis ball)
Low sodium whole grain ¼ cup hummus crackers
Proteins
1 cup vegetables
1 piece whole grain toast
1 cup yogurt
1 cup vegetable soup
⅓ cup cooked brown rice
½ cup canned plain beans or lentils (drained and rinsed)
¼ cup canned tuna/salmon 2 cups popcorn 1 cup cabbage salad (Crunchy Asian Coleslaw/ (Sugar and Spice Popcorn/ (drained and rinsed) Kidney Community Kitchen) Kidney Community Kitchen)
Snack Math Examples 1 fruit + 1 cup yogurt = morning snack OR 1 cup vegetables + ¼ cup hummus = afternoon snack OR 6 crackers + ¼ can tuna = evening snack You can also use leftovers like 1 cup vegetable soup, OR ⅓ cup leftover cooked rice, OR 1 cup leftover salad + ¼ cup canned beans/lentils When should I include a snack? If you are leaving a gap of more than six hours between your meals, we suggest that you include a snack at the four-hour mark. For example, if you eat lunch at 12pm, and dinner at 6pm, include a snack at about 4pm. Spring 2022 / Kidney Living / 17
MEDICAL MEDICAL RESEARCH RESEARCH
Lived Experiences The key to research success
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by Leanne Stalker, PhD and Paul St. Germain
Every individual living with kidney disease takes a unique journey. The lessons they learn, the experiences they acquire, the impact on their lives and those around them, provides a perspective that those who aren’t affected and haven’t lived it, cannot fully understand. It’s for that reason that patient‐oriented research, which involves a greater engagement of people living with kidney disease, has been prioritized in recent years. 18 / Kidney Living / Spring 2022
he Kidney Foundation of Canada research program is patient‐priority‐ focused. Our research decisions are always made with patients top of mind,” says Dr. Leanne Stalker, Director of Research at The Kidney Foundation. Recognizing that patients, caregivers, donors and those directly affected by kidney disease, come to the table armed with their own expertise, has provided huge value to research programs. Research programs and patient‐oriented research networks, such as The Kidney Foundation of Canada, Can‐SOLVE CKD, and The Canadian Donation and Transplantation Research Program are helping to bring patient‐priority to the forefront of kidney disease and transplant research design. Organizations provide support and training to help patients become engaged and empowered in the research system and training for researchers on how they can integrate lived experience into their work and make research more accessible to the community. “The need for a lived experience viewpoint has been recognized, and research programs have increased the importance of patient engagement in the process, as well as emphasizing focus on knowledge dissemination and communication to the community,” says Dr. Stalker. Lived experience partners provide invaluable insight at all phases of a research program. This includes helping to decide on program and funding focus including acting as peer reviewers, participating in individual study design, and contributing to research grants and publications. Their individual experiences are helping to shape the future of kidney research, from molecules and kidney.ca
MEDICAL RESEARCH treatments, to addressing systemic barriers and cultural bias. Sometimes, a new perspective can spur a lot of change. Nancy Verdin, and Mary Beaucage are two such lived experience experts who are actively involved in helping to shape and improve research funded by The Kidney Foundation. As members of the KRESCENT (Kidney Research Scientist Core Education and National Training Program) patient council, Nancy and Mary play an active role in mentoring the next generation of kidney scientists and doctors on the importance of lived experience. They met with us to recall their kidney disease journeys, their personal struggles, and the experiences that shaped their trajectory from patient to lived experience partner. “It was the beginning of the 1988 Winter Olympic Games in Calgary,” Nancy remembers. “I experienced a headache so awful, I thought I must be having a stroke.” At the time, she had no idea her kidneys were failing. She was taken to the hospital on Saturday night and began dialysis the following Monday. Mary’s experience was similar. In 2013, she began to feel unwell and attributed it to her diabetes. She went to the hospital, where she was discharged after her glucose tests came
back within normal range. Mary’s symptoms, however, progressed. The next morning, she lost fine motor skills and became unable to complete basic tasks. When Mary didn’t show up for work, a concerned co‐worker reached out and then called 911. By the time Mary arrived at the hospital the second time, she suffered a seizure, and was in a coma for four days. Dialysis was started immediately.
p Mary Beaucage
p Nancy Verdin
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Kidney disease can come with a steep learning curve. Nancy and Mary would join the ranks of a significant portion of kidney patients who get a crash course in what it means to have kidney failure. Nancy recalls a complete lack of knowledge surrounding kidney disease. “Other than The Kidney Foundation of Canada information binder, there was such a lack of information to guide me.” Kidney disease can come with a steep learning curve. They both recall how the attitudes of those around them, good and bad, shaped the journey. Barriers, such as locations, cultural differences, lack of knowledge, and long transplant wait times affected how difficult that journey would be. “Not everyone has the luxury of knowing people who know
people,” Mary recounts. “It shouldn’t be like that.” During that time, Mary remembers feeling compelled to act and thought, “As lofty as it sounds, if I can do anything to make a change (to the system) once I have this transplant I will. I just need to have the transplant. So, I did. That’s when everything else fell into place.” Kidney disease catapulted Nancy into a new life direction. One in which she learned how to ask for help and to lean on those around her. “I know this sounds bizarre, but kidney disease took me in directions I never would have gone otherwise. It’s taught me to include people and it has kept me connected by needing help.” As an occupational therapist, Nancy has always worked to make improvements for patients, even before she was diagnosed with kidney disease. Her involvement as a lived experience partner has made it possible for her to achieve that goal. A natural curiosity and an eagerness to learn have been valuable assets to her. “Having the opportunity to support change throughout the system, from health care to patient care to creating wellness, recovery and a healing path for the patients themselves is very important to me,” says Mary. “And by healing, I mean holistically, beyond just our bloodwork.” Both Nancy and Mary emphasized that their experience as a patient highlighted the importance of “having the opportunity to support change.” As such, they have both committed themselves to participate in being instruments of change for themselves, and those that will come after them, by actively participating in the kidney research landscape. The disease affected them. They are now committed to affecting the disease. “I really like being involved with the KRESCENT trainees and hearing from them the things they’ve learned from me and from us,” offers Mary. Spring 2022 / Kidney Living / 19
MEDICAL RESEARCH “Its great feedback and we don’t always get that.” “It really has changed the perspective and awareness of new investigators,” adds Nancy. “It has been fun to watch how they have learned and grown with it. I love the discussions that go along with it.” The inclusion of patient engagement and lived experience as an equal player in the research process is beginning to become normalized, but there is still a long way to go. “The system is continuing to improve, patients are being included earlier and being integrated in every phase of the research process,” says Mary. Some pieces can only be explained or clarified by the patients themselves, and these per-
spectives have often been overlooked in research or clinical design. “There are lots of things that are about the people, not just about the treatment,” Nancy states. Mary and Nancy are both outgoing people who aren’t afraid to dive into an unknown situation like becoming a lived experience partner. “Very often, it’s people like us who are driven to create change and become volunteers,” notes Nancy. “But it’s important for all voices to be heard and for a greater breadth of experience to be considered.” Mary agrees. “I’m really big on mentoring other patient partners to get them comfortable and give them the tools that we may not have had
Lived Experience Matters
Interested in learning how you can get involved in kidney research? The Kidney Foundation funds research with the goal that it will lead to addressing patient priorities resulting in long term health and wellness for those with kidney disease and post-transplant. Our Research Department continues to integrate lived experience into our research programs. Those with lived experience can provide valuable insight and expertise by actively participating in research initiatives. Sharing your story, participating as a patient partner or research participant in ongoing research studies, or acting as a lived experience reviewer can all play a significant role in ensuring that our research programs remain focused on the community and their needs. You can help researchers gain a better understanding of the challenges of living with kidney disease by participating in a study. We post opportunities on our website and share them through our enewsletters and our social media channels. Visit kidney.ca/participate-in-a-study to learn more. Interested in being part of the research process by sharing your lived experience or being connected with a research project? Contact Leanne Stalker, PhD, National Director of Research at leanne.stalker@kidney.ca to see how to get started.
20 / Kidney Living / Spring 2022
when we started this. Because I think succession planning is really important, especially when we’re dealing with a disease like this where anything can happen.” “As a life‐long learner, with every study I sit on, I’m learning something new about kidney disease, about research and about myself. I often come away energized and excited afterwards because it’s been a constructive, productive and useful meeting on a level playing field. What the patients have to say is valued,” concludes Nancy. “Feeling like we’re part of what is going on and that we are valued in the process, it fuels my need to support change and growth.”
The Kidney Foundation of Canada, Ontario Branch 2022 - 2023 Board of Directors Dr. Norman Muirhead, President Richard Bernreiter Mauro Burri Charles Cook Chris Costanza Elizabeth Giacinti Joanne Hagger-Perritt Alan Hui Craig Kerr, Past President Sarangan Lingham Roger Ma Marlene Rees-Newton Teresa Roberts Mary-Pat Shaw Marlene Smith 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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LIFESTYLE
Ask Me Anything FAQs with answers from the experts
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ow do I start the conversation with friends and family to explain why I need a kidney and how they might help me as a potential donor?
The best way to start the conversation is to be honest about your health situation and tell your story. Start by letting your friends and family know you are living with kidney disease and that your kidneys are failing. Let them know that the best treatment for you to live a healthy life is to receive a living donor kidney transplant. As a potential donor, your friends and family could save your life. Describe to them how living with kidney disease has affected your life, the limitations and struggles you face and how lifechanging a kidney transplant would be for you. Do you want a transplant so that you can watch your grandchildren grow older? Do you want to travel the world? How would a transplant change your life? What are you passionate about that a transplant could give you an opportunity to do? If you have friends and family members who are not eligible to be your donor but would like to help, ask them to be an advocate for you. They could share your story with work colleagues, create a social media campaign, create
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an awareness campaign with their social clubs and share your story widely to help you find a donor. The Centre for Living Organ Donation has many resources to help you find a living donor. We host weekly webinars, have first person stories, peer mentors and information on our website livingorgandonation.ca, on our YouTube channel and social media channels. Reach out to us at livingorgandonation@uhn.ca for more information or speak to your transplant coordinator and nephrology team to assist in your journey. Candice Coghlan Education & Outreach Coordinator Centre for Living Organ Donation at UHN Ajmera Transplant Centre Sometimes when I finish dialysis, I feel very weak and lightheaded. Is this normal? What can I do to make dialysis leave me feeling better, not worse? Post-dialysis fatigue is a common symptom: about one third of patients feel worse in the hours after dialysis. We don’t fully understand why some patients feel weak and fatigued after dialysis, while others do not. We do know, however, that it can be debilitating and associated with depression. Excessive fluid removal may make it worse and physical activity may make it better. While fatigue is common, lightheadedness (feeling faint or woozy) is not. This could be a sign of low blood pressure or too much fluid removal during your dialysis session. You should mention these symptoms to your nurses and nephrologist. They may want to check your blood pressure during the period of lightheadedness to make sure it’s not dropping. If you have recently gained “good” weight (e.g. fat or muscle), they may increase your target weight. Perhaps the dosing and/or timing of your blood pressure pills needs adjusting. Finally, some patients feel better on more gradual forms of dialysis (e.g. peritoneal Spring 2022 / Kidney Living / 21
LIFESTYLE [home] dialysis or nocturnal dialysis). Ask your healthcare providers if those are options for you. You may find that your symptoms are worse on dialysis days when more fluid is removed from your body. If you still make urine, a diuretic may help you eliminate more fluid between dialysis sessions. Minimizing salt intake can help with thirst and keep your fluid gains lower. Your dietician may have other tips to keep fluid gains within target. Dr. Caitlin Hesketh Nephrologist University of Ottawa I am interested in doing dialysis at home. It would make life so much easier for me and my family. How do I know if I can learn how to do it? The most important factor is you—your willingness to learn and be involved in your care. It’s important that you are able to hear and see the supplies/dialysis machine. Your dexterity should allow you to button a shirt. There are things to consider for home therapies such as: • Time commitment for training and regular clinic visit. Frequency of clinic visits are based on each patient. For stable patients it is every two months. • Responsibility of setting up, monitoring and cleaning up of equipment/dialysis machine. • Space for supplies/ dialysis machine/water treatment. Ordering and monitoring dialysis supplies. Reliable sewer/septic system. • Telephone for emergencies Home teams are available by phone/pager for medical /technical questions during on-call hours. Training schedules are based on your needs, until you feel confident and comfortable, usually 1-6 weeks, 3-5 days weekly, depending on modality choice. Pam Cerqueira RN, C Neph (C) Home Dialysis Coordinator Grand River Hospital
Do I need to tell my employer about my dialysis? The answer is “not necessarily.” You may have to provide your employer with information if you are applying for EI sick leave or short-term disability payments which require medical documentation about the nature of your disease and treatment. Your employer has the right to information to verify the legitimacy of your absence, understand your prognosis and safely return you to the workplace. Employers, however, are typically not entitled to know your diagnosis or the specifics of your illness. It is recommended that at some point you discuss with your employer the limitations of what you can do based on your disease and treatment. There is a provision called “Duty to Accommodate” for employers which means that if an employee has or develops a condition that prevents them from doing regular job duties, then the employer must try and modify work conditions as much as they can to ensure that you can keep working safely. Some patients, depending on the type of work they do, must consider options such as a reduction in hours, changes in positions or retirement due to disability. If you are starting a new job and if you are honest about your ability to perform the duties of the job in a safe, effective manner, you do not need to advise them of your medical situation. Employers cannot ask about any disabilities, but they can ask if there is anything that would prevent you from doing the job. It may prove to be to your benefit to advise a new employer at some point that you are on dialysis and may on occasion need to attend to your medical needs. Talk to the renal social worker at your unit about your employment and possible income options if continuing to work becomes difficult or unsafe. Michelle DiNardo MSW BSW RSW Renal Social Worker, Regional Renal Program Windsor Regional Hospital
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.
22 / Kidney Living / Spring 2022
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PERSONAL STORY
Shauna’s Story Giving the gift of “the happiest days of our lives”
My sister Kari’s journey with polycystic kidney disease spanned 35 years. In that time, she had many ups and downs and sadly in July, 2019 we had to say our final goodbye.
by Shauna Timlick
Above, right: Kari’s Krusaders Below: Shauna and Kari
Step Up and Step Out Kidney Walks take place across Canada each year. The Ontario Kidney Walk will take place in communities across the province this September. Walk in honour or in memory of someone you love. Learn more at kidneywalk.ca. kidney.ca
K
ari O’Reilly Urquhart was a daughter, sister, wife, auntie, fur mom, niece, cousin, granddaughter and friend; she was loved by us all and is dearly missed. She was strong and so brave, fighting more battles than any one person should ever have to. I loved my sister Kari more than words could ever express. I was blessed having her in my life and to have had the years, tears, laughs and so many memories together. She was there by my side helping take care of me right from my start. In 1998, the opportunity came for me to help take care of her; of course I was grateful to have it and was able to donate my kidney to Kari. I am proud to say that the kidney transplant lasted almost 17 years—quite an accomplishment! In those 17 years, she said she lived some of her best years and was able to have so many wonderful experiences that wouldn’t have been possible otherwise. She was able to travel all over the world, including a dream vacation with her husband to Australia. She even lived what she said was “the happiest day of her life”—the day she married her amazing husband, David. Donating my kidney to Kari was a defining moment in my life as well. It changed my life for the better. It changed my outlook on life and how I moved forward in my life, leading me to be healthier, and ultimately to live the happiest days and experiences of my own life. I know personally how important organ donation is, it matters; it changes lives for the better and can give people the happiest days of their lives. Kari had the kindest, most thoughtful, compassionate and generous spirit. She was passionate about raising organ donation awareness and fundraising with The Kidney Foundation to help improve the quality of life for those living with kidney disease. She was quite an ambassador and one of the top fundraisers every year for the Kidney Walk in Manitoba. She walked every year she was able—recruiting a large team every one of those years, to walk along with her and raise funds for the foundation. I was able to fly out and join them on a couple of occasions as well. Her husband Dave stood by her throughout her journey and held her hand in the many Kidney Walks they walked together. He continues her cause to raise funds and walks every year. The first year after her passing, we walked as a family in her honour at the London Kidney Walk. Kari’s husband Dave surprised us and flew to London without us knowing and showed up at Gibbons Park to walk along with us in her honour. Spring 2022 / Kidney Living / 23
September 2022
Together, we’re stronger than kidney disease!
Get behind the one you love by participating in Kidney Walk
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