Kidney Living - Fall 2018

Living

KIDNEY Fall 2018 Volume 11 • Number 2

www.kidney.ca/ontario

A PUBLICATION OF THE ONTARIO BRANCH

KIDNEY VOLUNTEERS SHAPE THE FUTURE

contents

FALL 2018

ADVOCACY 3 Advocacy 101 4 Raise Your Voice 22 Community Highlights 24 Calendar of Events LIFESTYLE/FOOD & NUTRITION 13 In sickness and in health . . .

15 Family Caregiving and Self-compassion 18 Food for Thought

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FUNDRAISING 16 Kidney Walk Report and Photos MEDICAL RESEARCH 19 Dr. Dan Cattran 20 Behind the Scenes: Q&A with researcher Marisa Battistella SERVICES AND SUPPORT 5 The Bottom Line 6 Counting the Cost 8 Income Supports 10 Happy Campers 11 Ready 2 Chat?

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Cover: Volunteers at the Toronto West Kidney Walk pose to spell out KIDNEY. Photo credit: Natalie Richard

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

Phone: 1-800-387-4474.

Š2018 Kidney Living, the contents of which is subject to copyright, is published twice a year.

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

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

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

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ADVOCACY

Advocacy 101 A voice on your behalf

by Trish Reynolds

The Ontario Branch Public Policy Committee coordinates provincial advocacy activities and provides leadership and support to the Foundation to identify, respond to and influence public policy issues relevant to the mission of the Foundation and to people affected by kidney disease.

Photo: Representatives of The Kidney Foundation of Canada participated in the Ontario Chronic Disease Prevention Alliance Day for Social Action at Queen’s Park. Pictured above are MPP Jamie West; Shannon Fogarasi, Director of Programs and Public Policy, KFOC Ontario Branch; MPP France Gelinas; and Wendy Kudeba, Director, Marketing & Communications, KFOC Ontario Branch.

Photo credit: Sadia Baig

www.kidney.ca/ontario

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he Kidney Foundation in Ontario has produced many reports, submissions and fact sheets on a range of important issues. We advocated successfully for the expansion of dialysis facilities across the province and the establishment of both the Trillium Gift of Life Network and Ontario Renal Network.

Earlier this year, The Kidney Foundation released the report: Reducing the Financial Burden of Kidney Disease. This report helps arm The Kidney Foundation, our volunteers and you to take action and make sure that our elected officials are informed of the financial challenges affecting people on dialysis and their families.

In Ontario, we are calling on our elected officials to address the financial burden of kidney failure by: 1. Developing a Medical Transportation Assistance Program to subsidize transportation costs to attend dialysis treatments, where there is no access to available, accessible and affordable public transit systems.

2. Reducing the financial burden of accessing medications for people receiving dialysis treatments by eliminating the Trillium Drug Benefit Deductible.

On September 24, 2018, The Kidney Foundation of Canada participated in the Ontario Chronic Disease Prevention Alliance Day for Social Action at Queen’s Park. Kidney Foundation representatives met with our elected officials to share information about the financial burden faced by individuals living with end stage kidney disease.  Fall 2018 / Kidney Living /

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ADVOCACY

Ontario Branch

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

African-Caribbean Kidney Association 1-800-387-4474 ext. 4140 acka@kidney.on.ca Brampton

1-800-387-4474

Brant County

1-800-387-4474

Central Ontario

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

Raise Your Voice Being an advocate doesn’t have to be scary

Chinese Renal Association 1-800-387-4474 ext. 4977 shukyu.fong@kidney.ca StoryBlocks.com

Myth vs Fact

Durham Region

1-800-387-4474 ext. 4964

Eastern Ontario

613-724-9953/1-800-724-9953 melissa.forster@kidney.ca

Advocacy in general terms is speaking up about an issue or problem. When people speak up for themselves to resolve a problem, they are practicing selfadvocacy.

1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca

Myth #1 – I don’t know anything about politics. What can I do?

613-542-2121 melissa.forster@kidney.ca

Fact: You don’t have to be an expert in politics to share your personal experience.

You are the expert of your story. Your elected officials do want to hear from you.

Share the impact that kidney disease has on you and your family.

Myth #2 – One voice won’t make a difference.

Fact: It’s true that sometimes it’s hard to feel that one voice, your voice, is enough—but it is! Grassroot efforts can affect change. When as a community we join together, we can make noise. Your voice, when working in concert with other voices, can make an impact.

Myth #3 – I don’t have the time; it’s too difficult.

Fact: You can choose as much or as little time to lend your voice to the effort.

Sample letter templates are available at kidney.ca/ontario/advocacy to make letter writing easy. Prefer to make a phone call? Schedule a time to talk to your MPP by calling your local constituency office. Your role in this advocacy effort is to share your personal experience and put a face on the issue.

Acting as your own advocate is an empowering experience that will help pave the way for solving issues in the future. Participating in decisions that affect you or your community has an added benefit of increasing your feeling of inclusion and it is always good to feel confident about playing a role in your care.

We are here to help if you have any questions.

We invite you to visit kidney.ca/ontario/advocacy to view the resources provided to help learn how to increase awareness about the financial burden of kidney disease and influence positive change. 

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Hamilton & District Kingston

London & District

1-800-387-4474 ext.4860 rizwana.ramzanali@kidney.ca

Niagara & District

1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca

North Bay

1-800-387-4474

Northern Superior 807-624-2680 marion.harms@kidney.ca Sarnia-Lambton 519-344-3462 elaine.hayter@kidney.ca Sault Ste. Marie 705-949-0400 tannis.mcmillan@kidney.ca Timmins-Porcupine 705-235-3233 tpkidney@ntl.sympatico.ca Waterloo – Wellington & District 1-800-387-4474 ext. 4966 tracey.babineau@kidney.ca Windsor & District 519-977-9211 erika.muscat@kidney.ca www.kidney.ca/ontario

SERVICES AND SUPPORT

The Bottom Line

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The toll of kidney disease goes beyond physical cost

by Natalie Richard

“I live on a shoestring. I can’t remember the last time I bought myself any type of clothes. But, if I didn’t get this treatment, I’d be dead!”

ecent retiree, Guy, understands the financial burden of kidney disease.

An autoimmune disease led Guy to kidney failure just this past spring. Living on a disability pension, before he began dialyzing at home, Guy felt crippled by the long, costly commute to receive his life-saving treatment in hospital.

“I cut back on a lot. I cut back on cable, I’m cutting my home phone, and so many other things. All of these cuts I’ve made because of dialysis because I just can’t afford to pay for anything anymore,” says Guy. While Guy dialyzed in centre, his son, Ryan, would take precious time off work to drive his father into the clinic, wait for treatment to finish, and return him home. Overall, the process took about eight hours each session. With Guy receiving treatment three times a week, it meant a lot of time off work for Ryan. Now, without a job and living at home to support his father, the pair aim to keep a positive attitude and take each day in stride.

Photos.com

www.kidney.ca/ontario

“I’m happy with what I’ve got. I’m happy to have a roof over my head, and while I’d like to have more money, I’ve got to be realistic.

Once you get kidney disease, you live day by day and it’s stressful, but I’m here today and you can’t let everything bother you, otherwise you really have nothing.”

With support from The Kidney Foundation, Guy was able to pay for some of his transportation while he was travelling for treatment.

The financial aid helped, but even with Guy now dialyzing at home, the financial struggle remains.

In 2016, The Kidney Foundation of Canada and the Canadian Association of Nephrology Social Workers (CANSW) partnered to administer a survey of Out-of-Pocket Costs for Canadians with Kidney Failure. According to the report, in Ontario, 46 percent of those who responded indicated that their household income decreased dramatically after the initiation of dialysis treatments. For those whose household income had decreased, 51 percent of respondents indicated that their household income decreased by 50 percent or more.

“Ontarians know there are people within our communities who are profoundly affected by kidney failure,” shares Shannon Fogarasi, Ontario Director of Programs and Public Policy for The Kidney Foundation. “What most Ontarians don’t hear about is the affect kidney disease can have on a family’s financial wellbeing. Supports provided by The Kidney Foundation for those dramatically impacted helps, but, it’s up to all of us to speak up and reduce the burden.”

You can make a difference in your community for fellow Ontarians like Guy, and his son, Ryan. Make your voice heard. Go online today to learn how you can advocate and reduce the financial burden of kidney disease: www. kidney.ca/ontario/advocacy.  Fall 2018 / Kidney Living /

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SERVICES AND SUPPORT

Counting the Cost Financial readiness for a kidney transplant

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by Suela Cela MSW, RSW, Kidney Transplant Program, St. Michael’s Hospital, Toronto

he decision to consider kidney transplant is a step towards improving the quality of life. While kidney transplant is a good experience overall, it might bring various financial barriers and challenges for an individual and their loved ones.

Transplant recipients and their family members frequently comment about how stressful and challenging it is to recover physically and emotionally from the transplant surgery. Most individuals living with kidney failure say that stopping work and financial instability is one of the most profound losses of getting sick. Financial stress from loss of income, cost of medications and other financial concerns can lead to increased stress and anxiety and consequently affect an individual’s ability to cope with the kidney transplant.

It is very important to identify these issues ahead of time and address them in a timely manner.

Here are some of the things to be considered to plan for while waiting for a kidney transplant: • How to pay for transplant medications • Transportation to and from the hospital • Cost of lost wages during recovery time • Arranging time off work • Dependent care costs (children, elderly parents, pets) • Getting help at home Evidence shows that individuals who have prepared for a kidney transplant tend to experience less stress and therefore fare better shortly after transplant compared to those patients who have not planned for a transplant.

StoryBlocks.com

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www.kidney.ca/ontario

SERVICES AND SUPPORT

Preparing for a kidney transplant: How do you know what you need and if you are ready for a kidney transplant?

Here is a three-step tool/approach to help identify what you need to prepare for a kidney transplant. This tool will help identify what you are missing, seek information and help you connect with available resources.

Step 1: Assess: Assess by asking “What do I need to have in place for transplant surgery?” Do I need to stop working? Do I have medication coverage? Arrange for childcare?

Do I have a support person that will help at home? How about transportation for multiple clinic visits the first few months post-surgery? Answer with a “Yes” or “No” for all questions.

Step 2: Learn and Connect: Learn about available programs and their eligibility criteria. If the answer is “No” to any of the questions in Step 1, then you have yet to get ready for a kidney transplant. Each person’s story is unique. Connect with the Social Worker of your dialysis unit or transplant Social Worker to learn more about available programs to guide you safely through these financial assistance and community resources.

Step 3: Follow-Up/Review Make sure to follow up with the programs you have applied and/or review enrollments on a regular basis. For instance, if you have applied for Trillium Drug Program to help with the cost of your transplant medications, then make sure that the application has been received, approved and keep up to date on a yearly basis. Medical transportation through ODSP is another support service that needs to be renewed on a yearly basis.

Above all, this three-step tool of “Assess, Learn/Connect and Follow-up/ Review” will help you become an advocate for yourself. Ask a lot of questions, spend time understanding your options and do not stop until you know what to expect and have plans in place.

The more work you do before your surgery, the easier it will be after, so all you have to do is to focus on healing and getting back to a more normal life. 

The Kidney Foundation of Canada, Ontario Branch 2018 - 2019 Board of Directors Craig Kerr, President Richard Bernreiter Chris Costanza Alan Hui Moe Jiwan Sandy Kauenhofen Craig Lindsay Michael Mastrionardi Dr. Norm Muirhead Greg Robbins, Past President Mary-Pat Shaw Sonya Solman Susan Tkachuk Dr. Gordon Wong Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003

Stay Connected... kidney.ca/ontario kidney.ca/on/enews

Join the Conversation www.kidney.ca/ontario

@kidneyontario Fall 2018 / Kidney Living /

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SERVICES AND SUPPORT

Income Supports Know where to look for help

by Trish Reynolds

Living with kidney disease can place a significant financial burden on both the person living with the disease and their family. While some individuals can continue to work while accessing treatment, there may come a time when you need to reach out for income support to meet your basic needs.

StoryBlocks.com

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Ontario Disability Support Program (ODSP) https://www.mcss.gov.on.ca/en/mcss/programs/social/odsp/index.aspx Many renal patients apply for support through the Ontario Disability Support Program (ODSP). This social assistance program offers financial help with essential living expenses. If you qualify for ODSP you may also be eligible for additional financial supports such as medications, dietary support and transportation costs Your eligibility for the program is based on your financial situation as well as your disability. When you apply for ODSP, your caseworker will ask for documentation related to your household’s housing costs, as well as information about your assets and household income. In addition, to determine eligibility, you will be asked for information about your medical condition that your doctor or another member of your healthcare team can provide.

ODSP is available to Ontario residents over the age of 18. According to the ODSP website, if you are under the age of 18, you can start the application process up to six months before your 18th birthday.

The process to apply and be approved for ODSP can take weeks to months, so patience will be needed.

Tips!

• To start the process, call your local ODSP office. You may get a better response by applying on the phone rather than online. Often it will take longer to share communication for missing or required documentation.

• The process will likely include a phone interview which will take close to an hour. Applicants should have in hand all their rent receipts, income statements, utility bills including cell phone bills, any car payments or rough guess value, bank statements, life insurance.

• Office Locator: http://www.officelocator.mcss.gov.on.ca/Index.aspx • Apply Online: https://www.mcss.gov.on.ca/en/mcss/programs/ social/ow/apply.aspx Canada Pension Plan-Disability Benefit (CPP-Disability) https://www.canada.ca/en/services/benefits/publicpensions/cpp/ cpp-disability-benefit.html CPP Disability is a taxable monthly payment available to people who have contributed to CPP and who are not able to work because of a disability. Eligibility is based on your CPP contributions, your disability and on your age (must be under age 65). www.kidney.ca/ontario

SERVICES AND SUPPORT

Eligible applicants include persons who have a severe and prolonged disability, be under the age of 65 and meet the CPP requirements. These requirements include making a contribution to CPP in four of the last six years, or three of the last six years if you contributed for at least 25 years.

Applicants must apply within the last five-six years that one was gainfully employed. You may have contributed for years but if you did not apply within the five-six year grace period you may no longer be eligible.

CPP-Disability Benefit is a written application process. The application can be found online and may be printed for completion. There are portions of the application that you will complete and portions that must be completed by the healthcare professional most responsible regarding your medical and functional issues.

Tips!

The number of years of contribution to CPP is key in determining how much one might be eligible to receive.

It’s important to note, that if you are applying for the CPP Disability Benefit but stopped working so long ago that you are now too late to apply, you may still be eligible for the benefit. This is called the Late Applicant provision.

If you had zero or low earnings because you were the primary caregiver raising your children, you may still quality for the benefit. This is called the Child-Rearing provision.

The CPP-Disability Benefit application process takes time and does not provide urgent income support.

If you are receiving disability income from other sources, such as a private insurer or a provincial social assistance program, you may still be eligible to receive the CPP Disability Benefit. However, these other sources may adjust their payments if you are approved for a CPP Disability Benefit.

Employment Insurance Sickness Benefit (EI) https://www.canada.ca/en/services/ benefits/ei/ei-sickness.html www.kidney.ca/ontario

Many renal patients don’t think of EI as an income support related to their kidney failure. EI offers temporary financial assistance to unemployed workers including people who cannot work because of sickness or because of compassionate care. EI Sickness Benefits provides a maximum of 15 weeks.

Workplace benefits for short term and long-term disability Some employers provide short term and long term disability through their benefits plan. To find out if you qualify for short term or long term income benefits based on your healthcare needs, speak to your employer or human resources representative. Usually there is an application process that will include information from you and from your healthcare provider, normally your physician.

Note: If one is receiving long term disability benefits, usually the insurance company will ask you to apply for CPP Disability Benefits after the two-year mark.

Veterans Affairs Canada provides financial assistance to those veterans who qualify based on their service.

The assistance can cover costs related to housekeeping, transportation, medications and other needs.

Income Tax https://www.kidney.ca/taxtips Each year, The Kidney Foundation prepares a general tax tips fact sheet to assist dialysis and kidney transplant recipients as they prepare their taxes.

The income tax assistance measures most often used by people with kidney disease are the Medical Expense Tax Credit and the Disability Tax Credit (T2201). These are non-refundable tax credits that reduce the amount of income tax you owe. They can’t reduce the amount of tax owed to less than zero, meaning they won’t reimburse your medical expenses, but they reduce the amount of income tax you must pay.

There is no cost associated with applying for the Disability Tax Credit. The form is easily accessible and simple to complete. If you have any questions about completing the form, speak with your renal social worker. The application does require your doctor’s signature.

Note: The Kidney Foundation tax tips is general in nature and does not necessarily cover all circumstances.

While we make every effort to be accurate, we recommend that you seek professional tax advice for your individual questions. The Canada Revenue Agency (CRA) provides detailed instructions for claiming the various tax credits and deductions that are available. You can find these instructions from the CRA website www.craarc.gc.ca or by calling 1-800-959-8281 Registered Disability Support Program (RDSP) and Canada Disability Savings Grant An RDSP is a savings plan to help parents and others save for the long term financial security of a person who is eligible for the disability tax credit.

The grant is an amount that the Government of Canada pays into an RDSP. The Government will pay matching grants of 300 percent, 200 percent, or 100 percent, depending on the beneficiary’s adjusted family net income and the amount contributed. Speak to your financial advisor if this is something that can benefit you.

Further information about the RDSP: www.cra.gc.ca/rdsp. https://www.canada.ca/en/employment-social-development/ programs/disability/savings/grantsbonds.html 

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SERVICES AND SUPPORT

Happy Campers

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Kidney disease is no picnic but Camp Dorset has made it bearable

by Natalie Richard

t age 20, Cathy thought she was invincible. Her diagnosis of kidney disease seemed like nothing more than a bad dream. A rare form of glomerulonephritis was a disease for old people, not a young woman. It was not until she became pregnant at 25 that the realities of chronic kidney disease became Cathy’s reality. During her first pregnancy, Cathy’s kidneys began to fail, and her labour was induced at 28 weeks. While her son, Logan, was Part of Cathy’s born healthy, doctors told Cathy it would strength lies within be dangerous to have another child, so the support of her Cathy’s sister-in-law offered to carry her family, and her second child. The medications from the drive to give her process, however, left Cathy in complete children a normal kidney failure. By the time her daughter, family life that does Rianne, was two months old, Cathy was not revolve around on dialysis. her chronic kidney “I know I’m not the youngest person disease. to go on dialysis, but I was young. I had young kids and to accept that this was going to be my reality for the rest of my life was the hardest part. For me to try and feel like I’m normal and for my kids to feel that they are not growing up in a house where it is all about mom being sick…it’s a challenge.”

Undeterred, Cathy’s family again stood

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strong by her side as she came to terms with her illness. In 2006, Cathy’s identical twin sister was tested and donated her kidney. For five years, Cathy lived with her sister’s kidney without the fear of rejection or anti-rejection drugs.

The disease that had taken her own kidneys, however, struck her sister’s donated kidney and Cathy found herself back on dialysis. A year later, Cathy received a deceased donor kidney and unfortunately, the disease recurred. Now, Cathy is living on home hemodialysis.

“I’d be lying to say that it’s been easy from the beginning and we haven’t had our struggles. But, [kidney disease] has made our family that much closer. It has helped me to realize that I’m a much stronger person than I realized.”

Part of Cathy’s strength lies within the support of her family, and her drive to give her children a normal family life that does not revolve around her chronic kidney disease. To create memories outside of her illness, Cathy and her husband try each summer to bring their family up to Lion’s Camp Dorset.

Located in the Muskokas and supported by The Kidney Foundation, Lion’s Camp Dorset is a family camp equipped with dialysis facilities and trained staff on site. Camp Dorset allows families like Cathy’s to “be a normal family” and go on vacation. With day programming and activities like canoeing, tennis, community dinners and more, Camp Dorset is a chance to get away from the realities of kidney disease while being connected to a reliable medical team. For Cathy, going to Camp Dorset is easy and her entire family can go together without being controlled by her dialysis schedule.

“It’s convenient and, thankfully, The Kidney Foundation supports it. Because it’s not just getting away, it is the financial aspect of taking a vacation while on dialysis. I am on disability and am not able to work, which impacts our finances. But The Kidney Foundation is there to help and has made it possible for us to go away and have these experiences together.”

Cathy, her husband, her children, and their extended family have all become stronger as they navigate life with chronic kidney disease.

“My kids and my family, they just love it there—to be able to go away on a summer trip that usually we couldn’t go on because of my dialysis. It’s a simple thing but it has a huge impact on our family.”  www.kidney.ca/ontario

SERVICES AND SUPPORT

StoryBlocks.com

Ready 2 Chat?

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Online peer support program for youth and young adults

by Natalie Richard

Kidney disease is commonly mistaken as a “disease for old people.” The myth that kidney health problems only happen to older people is false, and for younger people living with chronic kidney disease, can add to feelings of isolation.

*name changed to protect anonymity

www.kidney.ca/ontario

e don’t want a reality where youth and young adults can have kidney disease,” shares Sharmira,* a young adult living on dialysis. “We don’t want to acknowledge it, so we ignore it. That leaves those of us living with it all alone.”

For young people like Sharmira, dialysis, transplant and rejection are all things she can’t talk about with most of her family or friends.

“I get told, ‘Oh you can’t be sick, you’re so young!’ or, ‘You don’t look sick!’ and it makes it hard to accept what you’re going through. You feel like you’ve got to be positive all the time. But, we have to talk about the negative things and take off the mask. It’s okay to be angry and to hate dialysis. It’s okay to feel what you feel because it means you’re choosing to live.”

The way youth and young adults speak with one another is different from the conversations with their medical care team or their family. Meaning, when your friends don’t know what it’s like to manage a chronic illness, who can you turn to about your anger, your fear, your anxiety or your uncertainty?

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SERVICES AND SUPPORT

The Kidney Foundation of Canada now offers a safe space for youth, from 18-24 years old, and young adults, from 25-35 years old, to share what it’s like navigating life with kidney disease. After speaking with both youth and young adults in the kidney community, the online Kidney Connect peer support groups were launched this summer so young people could access support from across Ontario.

The groups are a safe space to talk about issues such as body image as you go through dialysis and transplant, dealing with “moonface,” facing the possibility of rejection, and juggling treatments with school, work and

social situations.

“We’ve got to be able to talk to other patients. Let out what’s happening instead of hiding our illness like we do with our friends.

Talking with others is where I get support.”

If you are a young person looking for support, join us online. Do you know a youth or young adult who is ready to talk? Share information about the online groups with them now. Remember, for many young people like Sharmira, “just talking about your story makes a difference.” Join the online youth and young adult support groups for free at www.kidneyconnect.ca/groups. 

“It’s okay to feel what you feel because it means you’re choosing to live.”

Interested in learning more about peer support? Call Sadia at 1.800.387.4474 Ext.4974. 

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www.kidney.ca/ontario

LIFESTYLE

In sickness and in health . . .

Caregivers provide vital support to partners with kidney disease

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Kidney disease affects not only those who have it but also those closest to them, especially spouses and partners.

by Heidi Westfield

StoryBlocks.com

www.kidney.ca/ontario

ooking after a partner with kidney failure can be both physically and emotionally draining. There are often challenges around child care, time management, and living on a reduced income. The stress of being a caregiver can be overwhelming.

For Jennifer, caregiving has required patience and a lot of resilience. When she first met her husband Jamie in Stratford, Ontario in 2009 he had just received a kidney transplant from his older brother. The surgery was a success, and he was doing well. There was no reason to believe their lives would be disrupted by serious illness. The couple got married, and had a baby girl. When their daughter was just a toddler, Jamie’s transplanted kidney began to fail.

“It was heartbreaking because not only was it a kidney his brother gave him but watching him suffer,” she recalls. “There was also the unknown of when he could get another kidney.

It was extremely difficult.”

At that point, Jennifer was essentially a single parent to her young daughter. Her income was paying the bills and supporting the family. She was also caring for a husband whose health was deteriorating. As his condition became more fragile, he spent more time in hospital. She remembers one night in particular when the burden of her new responsibilities was especially tough to shoulder.

“I had worked all day, and gone to see Jamie in hospital. I had just put my daughter to bed and I was exhausted. I sat down on the couch to take a few minutes for myself, and kind of broke down,” she says. “The realization of everything that was going on hit me hard.

How are we going to do this?”

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LIFESTYLE

How are we going to do this?”

q Jamie and Jennifer and their daughter

At that moment, Jennifer says a light switched on. She found a new strength to do what was necessary to take care of her husband and child. Her family has provided vital support, along with her employer. She also joined the Kidney Paired Donation Program to raise her husband’s chances of finding a donor kidney. While they have not received a match yet, Jamie has switched to home hemodialysis and is now happier and in better health.

Marianne of Grimsby, Ontario faced similar challenges. When Marianne’s husband Mike got very sick at a young age, she was also thrust into the role of caregiver. Their children were five and seven when a genetic disorder called Fabry disease caused his kidneys to fail. Along with her job and parenting, Marianne provided day-to-day care for her husband. She learned how to sanitize and operate the peritoneal dialysis machine they had at home, and change the dialysis bags. When the machine malfunctioned and beeped in the middle of the night, she was her husband’s lifeline.

“He was basically sick all of the time, along with being hooked up to the dialysis machine 11 hours a day,” Marianne recalls of the months before her husband received a kidney transplant. “While he was on dialysis Mike was hospitalized several times with fear of death. I stopped working because it got to be too much.”

The stress was also getting to their two young children. Her daughter Mia began to have stomach aches and Mike Jr., started tearing out his hair. Marianne credits her family and friends who helped with childcare and housework during a very challenging time.

Fortunately, Mike received a kidney transplant from a living donor in late 2017. It changed their lives. He can now eat and sleep well, and has returned to work. Their children are thrilled to spend more time with their father, and their nervous habits have gone away.

Marianne feels that going through this difficult experience has changed her; she has become tougher—“a bulldozer.” Her advice to other caregivers is stay strong and deal with the day-to-day challenges as they come: “You can’t just sit back, you have to be vocal and express what you need,” she reflects. “You have to focus on the task at hand.

Somehow you are going to get through it.”  q Mike and Marianne

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www.kidney.ca/ontario

LIFESTYLE

Family Caregiving and Self-compassion Can they co-exist?

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by Dr. Gavril Hercz, Psychonephrology.com Nephrologist at Humber River Hospital

When you’re caring for a loved one, you often forget about your own needs.

ociety’s rules and expectations of behaviour by family caregivers can seem quite onerous. A caregiver is anticipated to be a selfless individual who keeps the needs of the patient above everyone else’s, including his or her own needs. He/she looks after physical, medical, emotional, psychological, financial and legal needs. He is thought to be an epitome of patience, empathy and compassion. We often forget that the caregiver also needs care.

In an article published in the Delhi Psychiatry Journal (2011), it was found that “Caregivers of patients have been shown to demonstrate high levels of psychological distress and depression, with increased rates of physiological illness and personal, financial, family and social problems.”

In a 2012 survey by Statistics Canada, slightly more than eight million Canadians, or 28 percent of people aged 15 and over, had provided help or care to a relative or friend with a chronic health problem. Some caregivers provided care on a basis equivalent to a full-time job: 31 percent of those caring for their spouse and 29 percent of those caring for their child had done so for 30 hours or more per week.

Why people choose to be a family caregiver Taking care of a patient can be a physically and emotionally challenging task, yet people prefer to do so. When a family member first comes to know of the serious health conditions of his/ her loved ones, it comes with a state of denial and ill preparation. They think that the circum-

www.kidney.ca/ontario

stances will change and this phase is temporary. According to a study by The Physiological Society, “Stress in Modern Britain,” when rated on a scale of 0 to 10, the death of spouse or relative has a stress level of 9.43.

Most of the family caregivers are first timers and have no idea how time-consuming and demanding caregiving can be. Some of the factors that contribute to the decision to become a family caregiver are love, respect, affection, sense of accomplishment and preserving those special moments. Other than that, there can be social and financial reasons too.

Caregiver burnout When you’re caring for a loved one, you often forget about your own needs. When your roles and responsibilities as a caregiver seem endless, it may be a major source of stress, especially when you don’t see a way out of the situation. The chronic stress is associated with physical symptoms such as fatigue, insomnia, joint aches and so on. Chronic stress can create medical problems including high blood pressure, diabetes and a compromised immune system. The social effects of caregiver burnout can be withdrawal from friends and family along with losing interest in daily activities one used to enjoy.

How to burn the burnout without burning relations Learn the art of self-compassion: Along with the compassion for the patient, you should also think about self-compassion. If you start ignoring your needs, soon your body will start ignoring you.

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LIFESTYLE

REGISTER TODAY

Look after what you eat: Take a well-balanced diet and avoid skipping meals or munching only on snacks. This also includes watching your caffeine intake.

Connect with someone: Confiding your emotions and state of mindMEDIA in someone you trust PARTNER makes your mind freer for the challenges of the next day. Don’t be afraid to laugh and cry.

Set your priorities: Not all the things are equally urgent and important. Sort the tasks according to their urgency and significance and plan your day accordingly. Don’t forget to keep some time free for any unexpected circumstances.

Take care of your physical self: Exercise regularly and get adequate rest. There is a saying that a healthy body means a healthy mind.

Take care of your psychological self: You can relax your mind by listening to music, watching a movie, learning relaxation techniques, finding your spiritual needs, or by joining a mindfulness centre. You can also choose to pick a hobby that interests you.

Ask for help: When you feel that you are too stressed, don’t push your limits. Seek help either from your near ones or professionals.

Managing Employment: If you are employed and providing care for your loved ones at the same time, you may want to check the employment policies in your province or country. Employment and social development Canada offers the Compassionate Care Benefit program through the Employment Insurance program. The benefit provides “26 weeks of compassionate care benefits to eligible Canadians to care for a loved one who is dying or at risk of death.”

I

.C NATIONAL PARTNER

n 35 communities over four weekends in September, the kidney community joined together to take a giant step in the fight against kidney disease, raising over $900,000 in Ontario.

Individuals living with kidney disease, caregivers, family, friends and health professionals united as a community to raise awareness and funds to support those affected by kidney disease through education, patient support programs, and by funding research to improve understanding of kidney disease and its treatments.

The Kidney Walks are The Kidney Foundation’s largest fundraising event raising over $2 million each year across Canada. Kudos to our top five fundraisers: Kuldip Singh, Ericka Swaby, Nikola Franjic, Jason McAdoo and Christopher Pennington for their amazing dedication to the walk. New Kidneys on the Block were the top team on the leader board.

Thank you to national sponsor Otsuka Canada Pharmaceutical Inc., provincial media sponsor YESTV, T-shirt supplier Entripy Custom Clothing and the many local and regional sponsors who supported the event through donations and gifts in kind.

Photographs from the Kidney Walk can be found on The Kidney Foundation’s Flickr and Facebook pages.

By changing things in and around you, you can make sure that both you and your loved ones are provided the love and care that you both deserve. Seeking a little help can boost your energy levels and help you to spend further quality time with your loved ones. We would be happy to know what challenges you face as a caregiver and how you overcome them. 

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www.kidney.ca/ontario

MEDICAL RESEARCH

CA Ontario Kidney Walk Raises over $900,000

www.kidney.ca/ontario

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FOOD AND NUTRITION

Food for Thought Kidney-friendly eating on a budget

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s our living costs continue to rise, we all look to make budget conscious decisions to ensure we stretch our income as far as possible. Food costs continue to eat up a large portion of our weekly budget. For those living with kidney disease, there is the added complexity of choosing foods that fit the renal diet without breaking the bank.

One of the best things you can do for your budget and your kidney diet is to cook from scratch at home more often. Not only is cooking at home less expensive, it also provides you with greater control of the ingredients to meet your renal diet needs. Planning your meals ahead of time, while keeping in mind key ingredients that may be on sale each week helps to reduce your grocery bill. Write a list before your leave home—and stick to it. This will keep you on track and within budget and reduce impulse purchases.

To eat well and reduce your grocery bill, check out the tips below.

Vegetables and Fruit • Buy fresh local produce when it is in season. It will be less expensive than the imported produce and it will taste better: • Winter – turnips, onions, carrots, potatoes • Spring – strawberries, rhubarb, lettuce • Summer – cherries, berries, peaches, corn, green/yellow beans, cucumbers • Fall – apples, pears, plums, grapes, cabbage, broccoli, cauliflower • Try frozen vegetables without added sauces and seasonings and frozen fruit without added sugar if you are worried about fresh produce spoiling before you use it. They are less expensive but just as nutritious, and you can use the exact amount you need.

• Canned vegetables and fruits, although inexpensive, tend to be packed with lots of sodium and/or sugar. If you are going to purchase them, look for canned vegetables with “no salt added” and fruit with “no sugar added.”

• Purchase fresh fruits and vegetables at different stages of ripeness (some that is ready to eat today and some that will not be ripe for a few days).

BigStockPhotos.com

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Dairy • Purchase milk in bags rather than in cartons, you can freeze the extra bags and defrost them as needed.

• Buy plain yogurt and add your own fresh or frozen fruit.

• Mix skim milk powder with water according to package directions. www.kidney.ca/ontario

FOOD AND NUTRITION

Grain Products • To maintain freshness, keep bread in the freezer, well wrapped. Remove slices as needed.

• Stock up when pasta is on sale; it can be stored for several years if left unopened in a dark place.

• Buy plain ready-to-eat cereals rather than the more expensive pre-­‐sweetened varieties. Add fruit for sweetness, if desired.

Meat and Alternatives • Eggs are a great quality protein source, and only cost a few dollars for a dozen. Peanut butter is an inexpensive protein source as well, but should be limited to one serving per day (1½ tbsp).

• Save money by buying canned light tuna and pink salmon, which cost less than other varieties. Rinse with water to remove sodium.

• It is usually cheaper to buy larger cuts of meat, such as a whole chicken vs. chicken breasts. You can divide it into individual portions and freeze them to use later, or roast the whole thing at once and have leftovers.

• Arrange to share a larger package with a friend.

• If you have freezer space, buy larger packages when meat is on sale. At home, immediately divide the meat into individual servings, rewrap in plastic wrap and freezer bags, label and date packages and freeze.

• Try having one or two meatless meals a week. Try scrambled eggs, omelettes or tofu.

Inexpensive Buys • Less tender meat such as blade, chuck, flank, round, stewing meat, ground beef • Whole poultry, grade B or utility grade, chicken legs • Eggs • Beans, lentils, peanut butter • Pork butt, loin or rib, pork chops • Canned fish (look for low sodium varieties). 

International Volunteer Day December 5, 2018 Thank you to our incredible volunteers for your time and commitment to providing hope and help for Canadians living with kidney disease.

Volunteers play a pivotal role in all Kidney Foundation activities, from convening committees to organizing events and sharing their experience as peer educators. We are humbled at the outpouring of support of our 5000+ volunteers.

Are you interested in joining our team of volunteers?

Call 1.800.387.4474 ext. 4979 or visit kidney.ca/ontario/volunteeropportunities

Information and tools to help you manage your renal diet.

KIDNEYCOMMUNITYKITCHEN.CA www.kidney.ca/ontario

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MEDICAL RESEARCH

Dr. Dan Cattran Shining a light on the impact of glomerulonephritis in Canada

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by Natalie Richard

eginning his medical career as a resident at the Toronto General Hospital, Dr. Daniel Cattran dove into the budding field of nephrology in Sydney, Australia. During his work, Dr. Cattran recognized the need for a better connection between research and the treatment of patients with glomerulonephritis (GN). Supported by his division, Dr. Cattran addressed the need by creating the Toronto Glomerulonephritis Registry.

Glomerulonephritis is a disease of the kidneys in which the tiny filters in the kidneys that help to clean the blood become inflamed or damaged. If untreated, GN can lead to kidney failure. In most cases, the cause of GN is unknown.

“The hope for the GN registry was that we could move forward from just looking at interesting pictures of people’s kidney tissue down a microscope… and gain a better understanding of what it is we could do to prevent, stop, or at least slow down the progression of their kidney disease.”

Supported by The Kidney Foundation of Canada, international research funding agencies, and collaborations with kidney researchers locally and across the globe, Dr. Cattran has dedicated his career to patient care and to preventing the progression of kidney disease. Reflecting on the many bright memories of his long career in the field of nephrology, Dr. Cattran shares just one of the early positive effects he’s seen come from the glomerulonephritis registry: “Many felt that the kidney disease FSGS [focal and segmental glomerulosclerosis] was untreatable in adults,” recalls Dr. Cattran. “I just didn’t believe that was true. So, we looked in the registry data and we found that the biggest issue was that in many adults, you needed to have longer treatment with certain kinds of medications to see a benefit. That changed the attitude of both physicians and patients. The future is bright.”

At this year’s, A Time to Shine Gala, hosted by The Kidney Foundation, Dr. Daniel Cattran’s legacy of empathetic patient care and impactful research, especially his major contributions to GN research in Canada, was recognized with the Dr. George deVeber Distinguished Service Award.

Learn more about the impact of glomerulonephritis in Canada, www.kidney.ca/ glomerulonephritis 

t Dr Cattran with his wife,

Dr. Heather Beanlands

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What is the Canadian

Glomerulonephritis registry?

Led by Can-Solve CKD, the Canadian Glomerulonephritis Registry (CGNR) is a coast-to-coast initiative with investigators at nine research institutions across Canada. With this network, the project will develop personalized treatments for patients with glomerulonephritis (GN) and identify new ways of detecting highrisk glomerulonephritis. The goal of the CGNR is to improve kidney health for Canadians by understanding: • how kidney disease progresses in individuals • who will benefit from innovative treatments What is glomerulonephritis?

The name glomerulonephritis means inflammation of the kidneys.

There are many diseases which fall under this category, including IgA nephropathy (IgAN), Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD) Membranous Nephropathy (MGN), and Mesangioproliferative Glomerulonephritis (MPGN).

Treatment for glomerulonephritis: In mild cases, your kidneys may recover on their own. Even if the GN is more advanced, it may be slowed with preventative measures including: • Lowering your blood pressure with medication • Making changes to your diet Your kidney specialist may recommend other specific treatments. In rare cases, you may need temporary dialysis treatments to clean your blood until your kidneys recover or respond to treatment.

Remember, in the early stages, you may have no symptoms. Having your doctor test your urine for blood and protein is the best way to check for GN. www.kidney.ca/ontario

MEDICAL RESEARCH

Behind the Scenes A Q&A with Marisa Battistella, University Health Network, Toronto General Hospital

Where are you from? Where did you study?

I was born and raised in Thunder Bay, Ontario. I left Thunder Bay when I went to university. I completed my Honours in Bachelor of Science at Western University. I went on to do my Pharmacy degree at the University of Toronto and then my doctorate of Pharmacy at Idaho State University. I now live in Toronto.

How did you become interested in nephrology?

I have loved the kidneys since a very young age. I had a high school friend who received a kidney transplant which I feel is how I was introduced into nephrology. I find the kidneys very interesting as they affect all systems in your body. Of course, I find hemodialysis interesting because as a pharmacist I am interested to know and learn how medications are affected by dialysis.

What are you currently researching?

My current research is in Optimizing Medications for Chronic Kidney Disease patients. Patients on hemodialysis (HD) are exposed to polypharmacy by taking on average 12 medications per day.

Polypharmacy has been associated with an increased risk of non-adherence to medication regimens, adverse drug events, falls, hospital admissions and mortality. Deprescribing tools have been developed to reduce polypharmacy and have been successful in the elderly population, but these tools have not been applied directly to the HD population. The aim of our research www.kidney.ca/ontario

is to develop tools to guide the reassessment and deprescribing of specific medications that lack evidence for efficacy and safety in HD patients and to determine the effectiveness of these tools in reducing polypharmacy. Using the available evidence and a national consensus-driven process (which include patients), medication specific algorithms have been developed and validated to guide re-assessment and potential deprescribing of these medications in HD patients. Our next big step is to implement these tools in clinical practice for hemodialysis units across Canada.

How will your research impact the treatment of kidney patients? What is the long term goal?

My long term goal is to individualize medication use in CKD patients. I believe that many medications are helpful in treating and helping patients manage bothersome symptoms. However, I also believe that many medications are not helpful and there are other ways to manage their disease and symptoms.

Overall, I think pharmacists can help optimize medications in the CKD patient and decrease polypharmacy.

What does the grant from The Kidney Foundation mean to you?

The Kidney Foundation of Canada is the national health charity committed to kidney health and to improve lives for all people living with kidney disease.

It is an honour to receive support from the KFOC so that we can collaborate with patients on our research. Our

p Marisa Battistella

research aligns with the KFOC’s mission of involving patients in system design and planning, and enabling patients and families to make informed decisions with their healthcare team.

We believe we are the first to address deprescribing in the CKD patient.

Having a consensus-driven process that includes patients to develop a deprescribing tool kit will ensure that healthcare providers will be able to implement this tool in practice.

What word would you use to describe the kidney research community in Canada? Why? COLLABORATIVE. I think that the collaborative and congenial approach to patient care, research and teaching have helped clinicians better care for patients with CKD in Canada. I think that nephrology healthcare providers are leading the way in research and patient care by collaborating with patients to improve the delivery of medical care in CKD patients. ď Ž

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COMMUNITY HIGHLIGHTS

community highlights u Camp Dorset Camp Dorset marked its 40 th anniversary with a special celebration September 15, 2018. Starting from just three cottages on Deer Lake, Camp Dorset has grown to a summer resort with multiple guest cabins, efficiency units, space for summer camping trailers, a recreation centre, indoor heated swimming pool, and don’t forget the state-of-the-art dialysis centre. The camp has stayed true to its humble grassroots, but guests can expect nothing short of a family-friendly summer holiday with the ease of dialysis just steps away.

Ontario Branch President, Craig Kerr and Programs Coordinator, Sadia Baig attended the celebration, pictured here with Lion Mariette Desjardine, President, Camp Dorset Board of Directors.

p Pranav Meenakshi is a 15-year-old

student in Grade 10 at Vaughan Secondary School, who this past summer raised $1,500 for end stage renal patients receiving dialysis treatments at Camp Dorset. Pranav has been proudly attending Camp Dorset with his father since 2008.

u Kidney Clothes in Peel The Kidney Clothes team was out in full force picking up donations on September 19-20 as part of a pilot program with the Region of Peel.

This partnership will make it more convenient for residents to repurpose their unwanted clothing and textiles, diverting them from local landfills and turning them into support for Canadians living with kidney disease.

t Anchors Away

The Chinese Renal Association organized a boat tour in early September for their members, patients and their friends and families. Participants enjoyed the time together, the food and the beauty of Toronto Harbour.

From Lake Ontario, they also had a perfect viewing of the annual Toronto International Airshow.

22 / Kidney Living / Fall 2018

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS t Go Gosfield!

Students at Gosfield North Public School in Cottam raised $1,685 through their annual theatre production of The Shoemaker and Shhh…Elves. This was the fourth time the school selected The Kidney Foundation to receive the proceeds. Thank you students!

Photo credit: Essex Free Press

u Walk to Celebrate Terry Young celebrated his 45th transplantiversary in September by walking 45km at seven Kidney Walks throughout September. Terry and his wife Susan, along with members from his team The Youngsters, joined with walkers in Barrie, Owen Sound, Chatham, Toronto, St. Catharines, Brantford and Tillsonburg to raise funds to support Canadians living with kidney disease.

u Charity Golf Tournament Thank you to the East Asian Internal Support Network for selecting The Kidney Foundation as one of two recipient charities to receive support from their Fourth Annual Charity Golf Tournament on August 31, 2018.

t Go for the Green A big thank you to the Fidler family for their organization of the First Annual Go for the Green Golf Tournament, formerly The Kidney Foundation’s Golf Challenge at St. Thomas Golf and Country Club. A great turnout! So much fun and so many laughs! Cathy’s family and friends raised $6,271.45.

L-R Betty Clarke, Lesia Young, Cathy Fidler and Jeanette Fidler

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

November 2018

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Dialysis Holiday Party, Brantford Kidney Connect Support, Mississauga

December 2018 2

Patient and Family Christmas Party, Windsor 5 Kidney Connect Peer Support, Kitchener 5 Kidney Connect Peer Support, Scarborough 9 4th Annual Silver Bells Holiday Market, Sault Ste. Marie 11 Kidney Connect Support, Mississauga 11 Kidney Connect Peer Support, Niagara 11 Kidney Connect Peer Support, Thunder Bay 19 Kidney Connect Coffee Club, Oshawa

January 2019 2 8 9 15

Kidney Connect Peer Support, Scarborough Kidney Connect Peer Support, Kitchener Kidney Connect Chinese Support Group, Scarborough Kidney Connect Peer Support, Niagara

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

February 2019 6 12 13 13 17 19 20 27

Kidney Connect Peer Support, Scarborough Kidney Connect Peer Support, Niagara Kidney Connect Peer Support, Kitchener Kidney Connect Chinese Support, Scarborough Chinese New Year’s Dinner Kidney Connect Peer Support, Thunder Bay Kidney Connect Coffee Club, Oshawa Kidney Connect Support, Mississauga

-End Make Your Year ! d Donation To ay pe provided Use the envelo a/donate. or visit kidney.c

March 2019 March is Kidney Health Month 2 35th Annual Italian Night, Ottawa 6 Kidney Connect Peer Support, Scarborough 12 Kidney Connect Peer Support, Niagara 12 Kidney Connect Peer Support, Kitchener 13 Kidney Connect Chinese Support, Scarborough 14 World Kidney Day 20 Kidney Connect Peer Support, Thunder Bay 20 Kidney Connect Coffee Club, Oshawa 25 Kidney Connect Support, Mississauga 8 Kidney Connect Peer Support

April 2019 April is Be A Donor Month

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

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

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