Kidney Living Spring 2017

Living

KIDNEY Spring 2017 Volume 10 • Number 1

www.kidney.ca/ontario

A PUBLICATION OF THE ONTARIO BRANCH

A Community of Support

contents

SPRING 2017

THE FOUNDATION OF KIDNEY CARE/FUNDRAISING 3 Editor’s Message: Community 15 Pay It Forward: Kidney Car Celebrates 25 Years 16 Not Forgotten 20 Community Highlights 23 Calendar of Events PERSONAL STORIES/VOLUNTEERS 4 A Profile of Caring 6 Kicking Down Obstacles 10 Joyce Oswick: Volunteer Profile 11 Comic Relief

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SERVICES AND SUPPORT 7 Everyone is Welcome 8 Survey says . . .

9 Post-Transplant Chat 14 Dealing with Grief 17 Conservative Care ORGAN DONATION RESEARCH 13 Stronger than Ever

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LIFESTYLE/FOOD & NUTRITION 19 Less Salt, More Flavour 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: communications@kidney.on.ca.

Phone: 1-800-387-4474.

©2017 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 treynolds@kidney.on.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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Cover image: iStock.com

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www.kidney.ca/ontario

THE FOUNDATION OF KIDNEY CARE

Community We’re stronger together

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“The greatest gift we can give ourselves in times of struggle is the support from those who understand, those who have been there too.”

The Kidney Foundation of Canada, Ontario Branch 2017 - 2018 Board of Directors

Greg Robbins, President Richard Bernreiter Moe Jiwan Craig Kerr Craig Lindsay Michael Mastrionardi Mary-Pat Shaw Sonya Solman Susan Storey Susan Tkachuk Dr. Gordon Wong Maynard Young Terry Young Cathy Zackrias Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 www.kidney.ca/ontario

he word community is one we hear frequently. Whether it is the neighbourhood where we live, our faith group, or school—it is a place where we share something in common with others.

Many communities are groups we choose to join. Others, by their very nature, are not rooted in choice. For example, by virtue of our heritage we might be part of a cultural community. In the case of being diagnosed with a disease or condition, we immediately become members of a community where we share something in common with others.

Beyond sharing something in common, however, joining a community also means we enter a space where we can share with others and, often, are surrounded by a compassionate support network.

Providing support to people living with kidney disease and their caregivers is core to The Kidney Foundation’s mission. That support can come in many ways. In its simplest form, it’s knowing that information and resources are just a call or click away. At a deeper level, it’s providing opportunities for those affected by kidney disease to connect with others who have had similar experiences, to learn from them, and to gain personal strength.

Throughout the pages of this issue, you will meet people who have contributed to the thriving support network within the Foundation’s community. We’ve highlighted the generosity of peer support volunteers like Sharri and Lewis (page 4), and Joyce (page 10) who all sought support from others in a time of need, and are now paying it forward within their communities.

Support within a community can come in a number of ways. London Nephrologist, Dr. Lakshman Gunaratnam, shows support to the patients he treats not only in his practice or in his research lab, but also through volunteering and co-chairing an event to benefit The Kidney Foundation—another display of compassionately giving back to make a difference.

No matter what brought you into our community, a caring network of support is always available to you. Whether you want to connect for support from a trained volunteer, connect as a volunteer, or participate in an event, there are many ways to join with others who understand what it means to live with kidney disease. Our door is open, and everyone is welcome!  Trish Reynolds, Editor Communications Manager The Kidney Foundation of Canada, Ontario Branch Spring 2017 / Kidney Living /

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VOLUNTEERS

A Profile of Caring

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Couple’s compassion creates community and support in Niagara Region

by Natalie Richard

n 2011, Sharri and Lewis took off together on vacation. As they escaped the winter on a cruise down to Florida, Sharri began to feel ill. When she developed severe difficulty walking, both she and Lewis realized that something was seriously wrong.

Upon returning to Canada, Sharri visited her doctor and, following an unexpected diagnosis of kidney disease, began the slow decline towards total kidney failure.

Overwhelmed by the shocking diagnosis, Sharri and Lewis turned to The Kidney Foundation for support.

“The Foundation became a lifeline for me.”

Sharri says, “I learned everything I know now

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from the website and by joining Kidney Connect online,” Joining Kidney Connect was Sharri’s first involvement with The Foundation’s peer support programs. Through the online community she learned more about her disease and connected with others with similar experiences, especially as Sharri began dialysis in March, 2013. The support was invaluable to both her and Lewis, who tested early on to be a kidney donor. After two years of dialysis and preparing for the surgery, Lewis finally gave Sharri the gift of life.

Sharri and Lewis were not quite ready, though, to leave the dialysis unit. When a manager from their hospital asked if they would www.kidney.ca/ontario

VOLUNTEERS

like to participate in a support group, both Sharri and Lewis were immediately on board.

Now the couple co-facilitate multiple peersupport group meetings in the Niagara region.

Their support and dedication has positively impacted staff, volunteers and those touched by kidney disease.

“Sharri and Lewis are the type of people who truly make a real difference in the lives of patients,” says Brian MacLaren, Program and Patient Support Group Manager for The Kidney Foundation.

The support groups meet monthly, getting together with others to share experiences and to promote patient empowerment. To Sharri and Lewis, peer support is all about creating community and sharing your story because it could benefit someone else. To them, the biggest challenge is simply getting people to come out.

“I think a lot of the leeriness in attending is that the meeting will be doctors or nurses only. A doctor or a nurse will give you answers to your questions but they haven’t lived it,” Lewis explains.

To people considering reaching out to peer support, both Sharri and Lewis encourage

others affected by kidney disease to take the first step.

“Give it a try! Just come and listen to other people’s stories. We’ve been through it too. We know the ups, the downs, we’ve laughed, we’ve cried, we’ve screamed, we’ve lost our patience.

It’s a chance to vent and say what you want.” 

Interested in Learning More About Becoming a Peer Support Volunteer?

“Sharri and Lewis are the type of people who truly make a real difference in the lives of patients”

If you are interested in becoming a peer support volunteer, you can fill out a volunteer application form (kidney.ca/ ontario/volunteer-opportunities) and email it directly to Sarah Hart, Peer Support Manager at shart@kidney.on.ca or call Sarah Hart at: 1 800 387-4474 ext. 4572.

Following the application process, a one day training will be the first step in preparing you to become a peer support volunteer through the peer support program.

Connect with others...

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

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

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

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PERSONAL STORY

Kicking Down Obstacles

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It’s all about attitude

by Heidi Westfield

he mild spring air has Charles Cook feeling upbeat. The Kitchener, Ontario resident spends a good deal of time indoors on home dialysis. Now that warmer temperatures are here, he looks forward to getting outside as much as possible, and firing up his barbecue.

Charles has been on dialysis since 2015, when complications from heart surgery led to permanent renal failure. He hopes his doctors will soon find him healthy enough to be placed on the waiting list for a kidney transplant.

In the meantime, the 48-year-old is grateful to have a working heart.

Charles was diagnosed as a teenager with hypertrophic cardiomyopathy (HCM) just after being accepted to the U.S. Naval Academy. His ailing health forced him to leave the academy, and give up on a hard-fought dream. It was a major setback, but one he worked through with the help of his family.

“Life puts obstacles in all of our paths, our job is to keep banging at the one in front of us until we knock it down and move on to the next one,” Charles says, on the life philosophy he has come to adopt. ”I am able to get up and go, and as long as I have a breath in my body that is what I am going to do.”

Over the years Charles, who grew up near Atlanta, Georgia, has faced some frightening brushes with death. In 2005, he had a massive stroke.

It took 14 months of rehab and recovery before he was able to return to work. During that recovery time, doctors implanted a defibrillator in his chest. It saved his life a year later, when he went into cardiac arrest.

After moving to Canada in 2009, there were more surgeries and hospital stays. Still, despite these challenges, he refused to let his failing health affect his attitude: “There are people out there who have it worse than I do. What do I have to complain about? Nothing.”

In April 2016, a heart transplant surgery at Toronto General Hospital proved to be a turning point. Now, for the first time in many years, he has the energy to go for 30-minute walks and do other activities, such as cooking, that he enjoys so much.

“Since I woke up with somebody else’s heart in my chest, I have felt absolutely more alive than I have ever been in my whole life,” Charles says. “I can’t remember ever feeling this good.”

He is incredibly grateful to the anonymous donor who provided him with the new heart, “somebody who, in their dying wish, wanted to help somebody they didn’t even know.” He wants to return that generosity by giving back in any way he can. He continues to share his story to inspire others not to get knocked down by life, no matter what obstacles they face. 

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www.kidney.ca/ontario

SERVICESAND ANDSUPPORT SUPPORT SERVICES

Everyone is Welcome A caring community of support

by Trish Reynolds

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earning you or a loved one has kidney disease can be scary and confusing. It is a time when questions abound and the answers seem to be few and far between. That’s why Kidney Connect can be a lifeline. For some, group meetings are a way to meet others sharing a similar story and learn from their experience. “We see many pre-dialysis patients who are doing their best to learn as much as they can about kidney disease and related treatments, so that they can make informed choices about their care,” said Brian MacLaren, Program and Patient Support Group Manager. “Generally, these individuals come out for a number of meetings and leave resolved, confident and empowered to make some decisions related to their care.”

Some groups invite guest speakers to speak on a given topic, while others let the conversation flow as needed—there never is a shortage of meaningful topics to discuss.

For some, the introduction to the group meeting environment comes while experiencing great challenges. Some may even be in crisis. Medical advice is not given, but group members and trained facilitators share their experiences and provide fellow patients with information on conditions and treatments. They also provide coping skills as well as emotional and psychological support.

When you attend a group meeting, you can expect: • To be heard if you choose to speak • To listen without being forced to contribute • To learn about others’ experiences • To be empowered to make decisions about managing kidney disease • To be treated respectfully and your personal information kept in confidence.

The Kidney Foundation works with Renal Programs to organize new Kidney Connect support groups. View current support group meeting schedules at kidney.ca/supportmeetings or call Brian MacLaren at 1.800.387.4474 ext. 4973 to learn more. 

GraphicStock.com

www.kidney.ca/ontario www.kidney.ca/ontario

Spring Spring2017 2017 // Kidney KidneyLiving Living // 77

What is Peer Support?

SERVICES AND SUPPORT

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8 / Kidney Living / Spring 2017

To find out more about The Kidney Foundation strong peergo support of Canada’s Peer support programs, to volunteer training www.kidneyconnect.ca

Moving forward

www.kidney.ca/ontario

2016-11-16 2:59 PM

PERSONAL STORY

Post-Transplant Chat Dialysis After Transplant

by Sarah Mattok, RN; Fernanda Shamy, RN; Kevin Bradley, RN; Jennie Huckle, RN and Michelle Gabriel, RN 1. Is it common to need dialysis after a transplant?

The new kidney has gone through some stress before you received it. It can take a while for the kidney to recover and start working, so people sometimes need dialysis until it recovers. Poisons and extra water still need to be removed from the body before the new kidney is able to do so. This is called delayed graft function.

Delayed graft function can happen about 25 percent of the time.

2. It’s been one or two weeks since my transplant, and I’m still on dialysis. Why isn’t my kidney working yet?

There is some time, sometimes many hours, between the removal of the kidney from the donor and its insertion into the recipient. The time the kidney is outside of a body can stun it. When blood flow is restored to the kidney, the accumulated poisons can affect the kidney.

This is called “ischemia-reperfusion injury.” It can take several weeks for the kidney to recover from this shock.

3. How can you tell if my kidney is still alive?

Reprinted with permission from St. Michael’s Transplant Digest Newsletter. www.kidney.ca/ontario

A biopsy from the kidney is usually taken before putting it in, and is read a day or two later. The biopsy can tell us how much damage there was to the kidney. Also, after the transplant, we do frequent ultrasound tests to make sure the blood is still flowing well through the kidney.

Sometimes, another biopsy is done.

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4. How can I tell if my kidney is beginning to recover?

As the kidney recovers, the creatinine level in your blood before your dialysis session will start to decrease. You may also notice that you are passing more urine. You may also start to feel better. Often, an increase in your amount of urine is the first sign of recovery.

5. I was on peritoneal dialysis before, but now I’m on hemodialysis. Why did this happen?

In order for PD to work, the peritoneal membrane has to be intact. Sometimes during surgery, the peritoneal membrane is cut and the peritoneal cavity may be entered. This means that PD would no longer work for you, at least for the time being.

6. I think my kidney is working now. How will you know when I can stop my dialysis?

There is no need to stay in the hospital after the transplant just for dialysis. You can return to your dialysis unit. We will ask the dialysis centres to do blood tests before you start your dialysis session. As we see the results improve, we will recommend when to stop dialysis. Of course, you will continue to come to the Transplant Clinic regularly during this time, and we can make the decision to stop dialysis when you come to the clinic.

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RENAL PROFESSIONALS 7. I’m off dialysis now. Are there any precautions I need to take?

You should continue with the same care of your dialysis access that you used to do before the transplant. We will arrange for dialysis lines or catheters to be removed when you no longer need dialysis. This can be done at our hospital or your own hospital if you wish. We usually recommend that you have your PD catheter removed at your home hospital. We do not usually remove fistulas or grafts.

8. Are there any long-term side effects from dialysis after a transplant?

Side effects can be different for everybody, depending on the reason for needing dialysis after the transplant. Talk to your transplant doctor when you come to clinic about any side effect you experience. Avoid becoming too dry,

i.e., keep yourself with a little extra fluid in your body at the end of dialysis, so that the chances of injury to the newly transplanted kidney from too little water can be reduced.

9. I think this transplant isn’t going to work.

Can I get another one?

Most kidneys will start to work within three months. If the transplant does not work, it is possible to receive another one, after a period of recovery. You will need to go through some additional testing to make sure you are safe and ready for a second transplant. You should discuss with your doctor the various wait listing options available for someone with a failed kidney. Sometimes the failed kidney will need to be removed, but often it can be kept and a second kidney would then be placed on the opposite side. 

Joyce Oswick Thunder Bay Peer Support Volunteer

How did you first get involved with The Kidney Foundation as a volunteer?

How do you feel your volunteerism impacts our diverse kidney community?

I have been a chronic kidney disease patient for about 15 years. I was on hemodialysis for nine years and received my kidney transplant three and a half years ago and I attended my local Kidney Connect Peer Support Group. After my transplant, I became a facilitator for the group. I then started to volunteer with other events for The Kidney Foundation.

Anyone can be affected by kidney disease.

We all suffer the same way. My goal is to help anyone I can get through their renal journey a little easier.

Why did you choose to volunteer in this way?

I chose the Kidney Peer Support Group because I felt I had a lot of experience in this area and I had a lot to offer to kidney patients going down the same path.

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What is your most memorable experience volunteering?

This experience took place at a support group meeting. The person had recently been diagnosed as pre-dialysis. Mid-meeting, this person began to cry. We were very concerned at first.

However, they were tears of joy. This person thought that their life was over, but after listening to us talking together, they realized that life could still be good, just a little different. After this experience, I knew I could make a difference volunteering with this group and I felt fulfilled at the same time.

I have found great fulfillment through my volunteering with The Kidney Foundation and would encourage others to try it.  www.kidney.ca/ontario

VOLUNTEERS

Dr. Gunaratnam supervises his graduate student conducting an experiment at the Matthew Mailing Centre for Translational Transplant Studies at London Health Sciences Centre Photo credit: Cate Abbott

Comic Relief

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London Nephrologist stands up to make a difference in his community

by Natalie Richard

“The Kidney Foundation is the only hope for many patients. If you know someone who suffers from kidney disease or want to see the world rid of this disease, the best way to ensure that is to help raise money to support the cause.”

www.kidney.ca/ontario

omewhere between Sri Lanka, Ottawa, Toronto and Boston, Dr. Lakshman Gunaratnam found a passion for nephrology, the study of kidneys. Now, that passion drives a philanthropic spirit that fills London’s kidney community with hope . . . and laughter.

Dr. Gunaratnam’s journey into the study of kidneys began at the University of Toronto. Following medical school at the University of Ottawa, Dr. Gunaratnam completed research fellowships in Ottawa and Boston, including a 2005 KRESECENT fellowship. Dr. Gunaratnam’s research focuses on acute kidney injury (AKI) and kidney transplantation. In 2010, Dr. Gunaratnam returned to Canada as an Assistant Professor at Western University and Transplant Nephrologist consultant at the London Health Sciences Centre.

Now living in London, Dr. Gunaratnam dedicates his free time between his research and patients to serving his community through volunteerism.

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MEDICAL RESEARCH

“I have seen first-hand how kidney disease adversely affects patients and their families,” Dr. Gunaratnam says, “A particularly sad fact is the high mortality rate in our patients with end-stage kidney disease. On the other hand, I have also seen the enormous benefit kidney transplantation and cutting-edge research has had on our patients. That is why I have dedicated my life to improving the lives of all patients with kidney disease and preventing the various forms of kidney disease in Canadians.”

Dr. Gunaratnam first became involved with volunteering for The Kidney Foundation by modelling for London’s annual Celebrity Men Fashion event. Donating time towards the efforts of The Kidney Foundation is important for both Dr. Gunaratnam and his wife, Cathy.

“ . . . the best scientific minds and the most advanced research centers cannot fight this battle against kidney disease without funding to sustain it,” “Given that government resources are becoming increasingly limited, the support provided

by The Kidney Foundation has become crucial to improving transplant outcomes and sustaining leading edge research in kidney disease in Canada. Unfortunately, the best scientific minds and the most advanced research centers cannot fight this battle against kidney disease without funding to sustain it,” said Dr. Gunaratnam. “In addition, many of our patients cannot even afford to travel to receive the treatment or enjoy a holiday where dialysis is available (such as Camp Dorset). The Kidney Foundation is the only hope for many of these patients and that’s why we feel it’s so important to show our support.”

After the success of the Celebrity Men event and looking for other fun ways to help raise money for kidney research, Dr. Gunaratnam and his wife, Cathy Zackrias, became co-chairs of the Stand Up for the Cure comedy event in 2016.

“Dr. Gunaratnam may not realize this but he is the real life Superman in the lives of all the people he has helped,” says Kidney Foundation

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Fund Development Officer, Rizwana Ramzanali, “The Kidney Foundation of Canada is so fortunate to have him, his time and his talent.”

This year, Dr. Gunaratnam and Cathy again gave back to The Foundation and people affected by kidney disease by co-chairing the annual comedy night in April. 

Q & A interview with Dr. Gunaratnam What are you currently researching?

Acute kidney injury (AKI) in both native and transplant kidneys. We are studying the mechanisms of kidney injury and repair using basic science approaches. Our advances in the lab have led us to study how our genes can predict AKI or how the genes of the donor kidney in transplantation may lead to delayed graft function. My laboratory is also interested in kidney cancer and developing ways to treat advanced renal cell cancers.

How will your research impact the treatment of kidney patients?

What is the long term goal?

My research aims to develop novel treatments for acute kidney injury (AKI). We are also studying ways to prevent AKI from leading to chronic kidney disease when it is severe. A new area of research aims to identify genetic risk factors for AKI in patients undergoing cardiovascular surgery and early transplant dysfunction. Our goal is to reduce the number of patients who end up on dialysis and maximize the lifespan of kidney transplants.

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

Grant support from The Kidney Foundation was and remains crucial to my research. The amount of money available for studying kidney disease has always been limited in Canada, but, more so in the recent future due to national cutbacks in research spending. The Kidney Foundation was a lifeline for me as a young researcher struggling to remain funded and pursue a career as a clinician-scientist. The research support has also helped train many high-quality personnel (grad students, medical students and technicians) in kidney research. Many have gone on to careers in academic medicine or further research training because of grant support from The Kidney Foundation.

What word would you use to describe the kidney research community in Canada? Why? The kidney research community in Canada is very close knit. We are very fortunate that many of our kidney researchers are world leaders in their respective fields.

www.kidney.ca/ontario

ORGAN DONATION RESEARCH

Stronger than Ever

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Transplant recipient grateful for support of family and mentor

by Heidi Westfield

www.kidney.ca/ontario

hilip Gennis is back at work and feeling energetic just months after receiving a new kidney. The 67-year-old insolvency trustee had transplant surgery last December at St. Michael’s Hospital in Toronto.

For many years, he had watched with increasing concern as his creatinine levels rose higher, and his kidneys became weaker. While Philip was largely asymptomatic, his cold fingers, and the greyish white hue of his skin told the story: it was time to move forward with a transplant.

“I was astounded at how many members of my family stepped up and volunteered to do the bloodwork,” Philip says, then jokes: “All of a sudden you feel like you have done something right in your life.”

Both Philip’s wife Sandy, and his younger brother Michael Gennis were a match. After some deliberation, it was decided that Michael should be the living donor. That way, both

the donor and recipient would have a healthy partner at home during the recovery period.

Philip also had the support of his colleague Harvey Lipman at Spergel, who acted as mentor through the transplant process. Harvey received a new kidney about 10 years ago, and was able to provide insights and advice on how to best navigate the experience.

“It is very important to have someone to speak with,” says Harvey. “You are not going into the transplant process blindly. You know what to anticipate. It takes away some of the mystery around the procedure.”

Michael, a real-estate broker in Ottawa, had no reservations about donating a kidney to his brother. They grew up in a tight-knit family, and remain close today. He describes his experience as a donor as “more surreal than scary.” While the first days after surgery were difficult, after a few weeks he was feeling like his old self. Michael was able to pick up his real estate practice in March, without skipping a beat. “It is amazing how relatively easy the surgery was. I don’t feel any loss of health or vitality. Honestly, it is like it never happened.”

Philip recalls how his skin was back to a healthy pink colour just minutes after receiving his brother’s kidney. Now back at his North Toronto office full-time, he is being closely monitored by a medical team at St. Michael’s Hospital. He is incredibly grateful for his brother’s generosity, which has provided him with a new lease on life, and better options for the future.

“I am walking around with another human being’s organ in my body keeping me alive. I am living a normal life because of the selfless act of love and kindness of another human being,” Philip says. “There are no words in the English language that you can express this gratitude with. It is just really overwhelming.”  Spring 2017 / Kidney Living /

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SERVICES AND SUPPORT

Photos.com

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Dealing with Grief It’s something we share

by Trish Reynolds

Advance Care Planning Resources: Living with Kidney Disease, Book 2, Chapter 6 (https://kidney.ca/book-two-livingwith-kidney-failure).

Speak Up Ontario www.speakupontario. ca.

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ach week over 7,000 men, women and children in Ontario travel to a hospital or satellite unit for their dialysis treatment.

The faces become familiar: from the healthcare professionals charged with attending to medical needs, to the camaraderie of the fellow caregivers and patients. Quietly, connections are made and support is given, sometimes with just a slight nod of understanding.

That’s why when there is a loss, it can cause of flood of emotions for patients, caregivers and staff alike. For fellow patients, the loss can be difficult. Grief by its very nature can be traumatic.

Many of the patients know each other, support each other, but may not even be aware of a fellow patient’s last name. It really is a rather unique relationship. There are few other medical treatments or activities, where you connect so regularly with the same people, possibly for years at a time. So it’s only natural that relationships develop.

For hospital staff, acknowledging memories of a patient is healing. “In our renal program, we hold an annual memorial service for our healthcare team to recognize those that have passed in the previous year. It gives us time to grieve,” said Corinne MacNab, Renal Social Worker with www.kidney.ca/ontario

SERVICES AND SUPPORT

the Simcoe Muskoka Regional Renal Program. “A condolence card is available and we send the family hospice information from their home community to help support them through the process.”

Different renal programs have different practices in how they deal with a loss, ensuring that the privacy of the patient and the family come first and foremost. “We generally share with patients on the same shift news of the passing of a fellow patient; the response is often silence,” added MacNab. Frances Fraser, a Renal Social Worker from Grand River Hospital, cites a similar practice for the Satellite Renal Units that she works with. “We send a memory card that has been signed by my Allied Health colleagues, along with bereavement and grief resources to the family tailored to the community where they live. We usually hear back from the family that the package is appreciated, and that helps staff as well. At times, a condolence call is placed so we can actually hear how the family is doing.”

For the caregivers, there is loss on so many different levels.

Instinctively, we think of the loss of a loved one, but the caregiver can also feel a loss of the “renal unit family,” fellow patients and other caregivers who have formed a caring supportive community.

“We do know that when plans—Wills, advance care planning or health wishes—are discussed, the grieving process for everyone is so much easier,” added MacNab. The Ontario Renal Network recently released a report on Palliative Care, which aims to strengthen their efforts in palliative care for individuals living with chronic kidney disease. 

Pay It Forward Kidney Car celebrates 25 years

iStock.com

Donating is easy: start the process online at kidneycar.ca or call Kidney Car at 1-866788-CARS (2277). Donors receive a free tow within 48 hours, as well as a tax receipt for a minimum of $300. But the biggest perk?

By donating your unwanted vehicle, you’re helping Canadians living with kidney disease. www.kidney.ca/ontario

K

Tips for Dealing with Grief There is no right way or wrong way to deal with feelings of grief; everyone grieves in their own way.

1. Take your time. In the same way that there is no right way or wrong way to grieve, there is also no specific time way for the healing process.

2. Lean on others for support. Your family and friends can be an important source of support.

3. Try to maintain your routine. Take time to enjoy the hobbies and activities that mean the most to you.

4. Seek help when needed. If you are feeling depressed or having trouble maintaining your normal routine, it may be time to seek additional support. Speak to your family physician or contact your local hospice about support groups and resources in your community.

idney Car would like to thank everyone who has donated a vehicle over the last 25 years.

If your vehicle has reached the end of the road, you can give it a second life—one that helps Canadians living with kidney disease.

Through Kidney Car, vehicle owners can donate their car to The Kidney Foundation of Canada. This year, Kidney Car turns 25 years old and wants to celebrate the generous support from donors that has made it the largest and most-trusted car donation initiative in Canada.

The program accepts vehicles of any age or condition, and it’s a simple way to say “goodbye” to an unwanted car, truck, van or SUV. “It’s the easiest thing I’ve ever done in relation to an automobile,” says Harvey Thomson, a volunteer and Kidney Car donor. “It took one phone call to have my car picked up, the plates removed and to sign over the registration.”

Donated vehicles are either recycled or sold, and the proceeds are invested back into activities to help the one in 10 Canadians living with kidney disease. The funds support vital medical research, efforts to raise awareness of kidney health and organ donation, and programs for patients and their families.

“We’re very proud of our peer support program, where people can speak with a peer who has gone through a similar experience,” says Thomson. “Sometimes talking to someone who’s gone through it is just as important as talking to the doctor.”

Donate, feel great! 

Spring 2017 / Kidney Living /

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FUNDRAISING

Not Forgotten “A Legacy for My Second Family”

B

by Bruce Hill

ill Baker, a kidney disease patient, was a frequent visitor to The Kidney Foundation of Canada, Sarnia office as he welcomed the warm and friendly interaction he had with staff and volunteers.

He also came to appreciate all that The Kidney Foundation did to support patients and their families. From providing helpful information on disease management, to its Canada wide research program, to staff and volunteer visits to see patients like himself in the dialysis unit, Bill was most thankful for the Foundation’s programs.

Like many patients, Bill had dialysis treatments three days a week and counted on his nurses for his in-centre care. These people were, in his words, “like his second family.”

Indeed, dialysis is very much a way of life for some 35,000 Canadians, with many choosing to have their treatment at hospitals and clinics.

The nature of these three-times-a-week visits endears patients to those that provide their care: their nurses, nephrologists and support workers. The camaraderie that develops between patient and nurse is quite special, with

16 / Kidney Living / Spring 2017

many getting to know each other’s stories about their lives and families.

Bill wanted to do something meaningful on his passing for both, and knew the power of charitable giving. Some time ago, he had taken out a life insurance policy naming The Kidney Foundation of Canada as beneficiary of the policy proceeds. On his passing last year, The Kidney Foundation of Canada received the proceeds of the policy and his Estate received a charitable tax receipt equal to the policy’s death benefit. A significant portion of the monies will support The Kidney Foundation of Canada and its mission to provide hope and support through programs and research and an amount was also set aside for a party for the hospital nurses to have a celebration.

The Kidney Foundation of Canada counts on the generosity of legacy donors to support its programs and research. Through your Will, gift of life insurance or other planned gift, you can create your own personal legacy. If you would like more information about these future gifts, call The Kidney Foundation at 1-800-387-4474 ext. 4968.  www.kidney.ca/ontario

SERVICES AND SUPPORT

Conservative Care A Q&A with Dr. Gavril Hercz

Dr. Gavril Hercz is a Nephrologist at Humber River Hospital and is the founder and a contributing member of psychonephrology.com. This website features resources and information to help patients, families and caregivers cope with the psychosocial impacts of kidney disease.

W

hen we speak about treating kidney failure, we traditionally think of dialysis and transplantation, but there is another option and that is to not have dialysis or to stop dialysis. This is referred to as non-dialysis supportive care or conservative care.

What is non-dialysis supportive care?

Non-dialysis supportive care means that patients choose to let their kidney disease run its natural course. Sometimes dialysis therapy can be more of a burden than a benefit to a patient’s health, and it might do little to improve quality and length of life. For example, sometimes for patients who are elderly and frail, or for those patients who have other severe health conditions in addition to kidney failure, dialysis may not be a benefit, and it could even lead to a further decline in quality of life. It is important to think about, and to discuss with your loved ones and your healthcare team, whether or not dialysis will help to provide you with the quality of life you desire.

What happens if I choose to have nondialysis supportive care?

GraphicStock.com

www.kidney.ca/ontario

With non-dialysis supportive care, there is a focus on managing any symptoms, preserving the remaining kidney function and delaying further decline for as long as possible.

Spring 2017 / Kidney Living /

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SERVICES AND SUPPORT

Patients will continue to receive supportive care from the healthcare team in the kidney clinic on a regular basis, and have their kidney disease managed, but without dialysis. This means accepting the gradual loss of kidney function, as well as the symptoms that come with it, such as nausea, decreased appetite, decreased energy, increased fatigue and eventual death. Most of the symptoms of kidney disease can continue to be managed with medications, but your health will continue to decline as your kidney disease progresses, and eventually measures will be put in place to ensure your needs are met and you are as comfortable as possible.

It is important not to rush into making a decision, and to consider and weigh the advantages and disadvantages of each treatment option. Sometimes patients can make treatment decisions in the early stages of kidney disease, but they might feel differently as their kidney disease progresses.

If I choose non-dialysis supportive care, can I change my mind?

If you initially choose non-dialysis supportive care, you can change your mind and decide to start dialysis upon discussion with your family and healthcare team. Similarly, if you start dialysis and decide it isn’t right for you, or it isn’t providing you with the quality of life you desire, you can choose to withdraw from dialysis, at which point non-dialysis supportive care would come into effect.

Sometimes, a three- to six-month trial of dialysis is an option for patients who feel unsure whether or not they want to choose dialysis as their treatment plan. This allows patients and families to see what life would be like on dialysis, and help patients to make an informed decision.

I am concerned about what my family might think. What should I tell them?

Families of patients sometimes struggle to understand the choice of non-dialysis supportive care, seeing it as a way of giving up, deciding to die without dialysis treatment.

It is important for patients to speak openly and honestly with their families about their choice and their reasons for making that choice. During these communications, it is also helpful to assign a Power of Attorney (POA) for personal care (see Advance Directives), someone who can advocate on your behalf if you are not able to, someone who is familiar with your goals of care. Your social worker can assist you in assigning a POA and establishing these goals of care.

Where can I get more information about non-dialysis supportive care or conservative care?

Your healthcare team is the best source of information about the kinds of support that are available in your region for non-dialysis supportive care, and later for palliative care. In particular, your renal social worker will have details about local resources that may be available.

Thank you to Dr. Hercz for allowing us to share this content from the Sifted Sands news feed at psychonephrology.com. 

Stay Connected...

Once I start dialysis is it possible to stop?

In choosing to continue receiving dialysis or not, it is important to remember that this choice is available and is yours to make. This can be done at any time during your clinic visits or even after dialysis has been started.

It is important to speak with your healthcare team so that you have all of the information you need to make a decision, and so that you and your family can work out a care plan that’s right for you.

18 / Kidney Living / Spring 2017

@kidneyontario www.kidney.ca/ontario

FOOD AND NUTRITION

Less Salt, More Flavour

A

How to Pair Foods and Spices

by Dani Renouf, RD

Pairing Foods for Flavour

A great book that I came to know a few years ago, called The Flavor Bible, provides a great overview of what herbs and spices best accompany certain foods. For example, vegetables such as carrots and cucumber are enhanced by dill, fish lends itself well to the acidic flavours of lemon, lime and vinegar, and black beans are brought to new flavour heights with smoked paprika, garlic or Italian herbs.

Shaking It Up

Often, many of my clients are in a rush when preparing meals because they work or have families to look after. Instead of reaching for the salt shaker, I recommend that they prepare a batch of mixed dried seasonings which they can keep in a glass parmesan shaker purchased from the dollar store.

Keep It Fresh

Using freshly-chopped green onion, ginger, garlic, shallots and other aromatic ingredients in salad dressings, marinades and stews can lift flavours of basic foods to new heights. Using small amounts is all you need, and the rest can be frozen for future use.

Even if your cooking skills are at the basic level, salt-free seasonings can be an easy and healthy way to expand the flavour palate at home and bring excitement to everyday dishes. At the same time, reducing salt intake in the diet can have significant outcomes on overall health and wellbeing. It’s a win-win situation.

Basmati Rice with Sweet Onions and Summer Herbs An easy and tasty side dish.

Ingredients 1½ cups basmati rice 2 Tbsp margarine 2 cups chopped sweet onions (Vidalia) 2½ cups low sodium chicken stock or water 3 Tbsp finely chopped flat-leafed parsley 2 Tbsp finely chopped dill 2 Tbsp finely chopped tarragon Directions 1. Rinse rice under cold water until water runs clear, set aside.

2. Melt margarine in a large saucepan over medium-high heat and sauté onions until translucent, about 5 minutes.

3. Add rice, 2½ cups of stock or water and bring to a boil.

4. Reduce heat to low, cover and cook until rice is tender, about 15 minutes. Remove from heat and let stand, covered 10 minutes.

5. Stir in herbs and season with pepper.

Renal Diet Nutrient Analysis Servings per recipe 6; Serving size 1/6 of recipe Nutrient Analysis Calories 67; Protein 2g; Carbohydrates 28.5g; Fibre 1.4g; Total Fat 4.2g; Sodium 58.5mg; Phosphorus 55mg; Potassium 130mg Renal and Diabetic Exchanges 2 Starch

Source: Shannon Chesterfield, Kidney Community Kitchen

Italian Salt-Free Herb Blend 2 Tbsp dried basil 2 Tbsp dried oregano 2 Tbsp dried parsley 1 Tbsp garlic powder

www.kidney.ca/ontario

www.kidneycommunitykitchen.ca Spring 2017 / Kidney Living /

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GraphicStock.com

s a dietitian, my favourite part of my work is informing clients that they can have the foods they love, rather than focusing on what they need to restrict. This positive messaging is something I strive to do with each client. As the bulk of the nutrition education I offer involves strategies to lower sodium, I have started exploring ways in which to help clients enhance the flavour of their food without using salt or other sodium-containing sauces and dressings.

COMMUNITY HIGHLIGHTS

community highlights t Chinese New Year

The Chinese Renal Association held their annual Chinese New Year’s Dinner to celebrate the Lunar New Year with kidney patients, their families, health professionals and community partners. The celebration also marked the Chinese Renal Association’s 20th anniversary.

q Kidney Car – the best option for

q Ontario Volunteer Service Awards

Sarnia area volunteers were recognized with Ontario Volunteer Service Awards at a special celebration held at the Dante Club. Long-time Sarnia volunteer and Ontario Branch President Greg Robbins received his award for 45+ years of volunteering. Also recognized: Sarnia Chapter President Krista Serratore, Sarah Hayter, Nicole Ferrera, and John and Phyllis Lockery.

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your unwanted vehicle.

Kidney Car is proud to work with many fabulous partners across the province.

In Sarnia, the Sarnia Auto Wreckers have been picking up Kidney Cars for many years. Pictured here are Kidney Car donors Sean and Jacey Lund with Kidney Foundation representative Elaine Hayter and Jeff Williams from the Sarnia Auto Wreckers.

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS t Kidney Clothes

The amazing community of Pontypool collected 18,980 lbs of clothing and other cloth-based goods to help them reach their fundraising goal and ours. We can’t thank the phenomenal Pontypool volunteers enough for their effort in helping our team load up our trucks and collecting a record breaking amount. Learn more about fundraising with Kidney Clothes by emailing corporate@kidneyclothes.ca or calling 1.800.414.3484.

u Kidney Health Month (Pictured

below, top to bottom) The Chinese Renal Association held their annual Kidney Health Day to promote kidney health in the Chinese community at the Market Village Shopping centre in Markham.

The day included a press conference, SeeKD screening and education.

The Waterloo-Wellington Chapter hosted their second annual Artilicious event on World Kidney Day. A great time was had by all who attended the event at the Kitchener Market.

Thank you to our wonderful business partners: from amazing food and drink to creative artistry displayed by local artisans, there was something for everyone.

The London and District Chapter partnered with London Health Sciences to raise kidney health awareness on World Kidney Day at Westmount Mall.

www.kidney.ca/ontario

Spring 2017 / Kidney Living /

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COMMUNITY HIGHLIGHTS u Universal Music Canada

The Kidney Foundation partners with Universal Music Canada: Volunteers Marianne, Delaney, Gerry, Greg, Jeff and Gordon invited Canada’s best musical talent, including The Tragically Hip and The Tenors, to make some noise about organ donation at Universal Music Canada’s award party in Ottawa on April 2, 2017.

t Game Time

The Kingston Chapter held Kidney Night with the Frontenacs on Friday, March 10, 2017. Kidney Foundation ambassadors, Fynnley and Teagan, were joined by Doug Gilmour and participated in the ceremonial puck drop. q Kidney Car in the Driver’s Seat

Kidney Car rolled into the Canadian International Auto Show, a great way to kick off our 25th Anniversary. Thank you to the amazing volunteers who supported this effort.

p Artilicious Windsor

Volunteers Tammy Costas and Terri Armeland sell noodles for the noodle raffle at the Third Annual Artilicious which took place at Caesars Windsor on November 9, 2016. The event had a record year with more than 500 attendees and raising over $20,500.  Photo Credit: Eyes on Windsor

22 / Kidney Living / Spring 2017

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. www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

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

May 2017 25 26 26 29

Celebrity Men Fashion Event, Sarnia Celebrity Men in a Fashion Event, Windsor Comedy for Kidneys, Hamilton Kidney Connect Support Group, Mississauga

June 2017 7 7 8 20 21 22 24 27

Kidney Connect Peer Support Group, Kitchener Kidney Connect Peer Support Group, Niagara – Welland Celebrity Men in a Fashion Event, Kitchener Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Coffee Club, Oshawa Taste of Summer Dinner, London Kidney Golf Tournament, Hamilton Kidney Connect Support Group, Mississauga

July 2017 7

8 11 11 13 19 24

Christine LaBrasceur Golf Classic, Huron Oaks, Sarnia Kidney Golf Classic, Timmins Kidney Connect Peer Support Group, Kitchener Kidney Connect Peer Support Group, Niagara – St. Catharines 2017 Golf Challenge, “Putt” an end to kidney disease, London Kidney Connect Coffee Club, Oshawa Kidney Connect Support Group, Mississauga

August 2017 8 9

Kidney Connect Peer Support Group, Niagara – St. Catharines Kidney Connect Peer Support Group, Kitchener

www.kidney.ca/ontario

13 16 22

Greenfield Golf Tournament, Scarborough Kidney Connect Coffee Club, Oshawa Kidney Connect Support Group, Mississauga

September 2017

Kidney Walks will take place in communities across Ontario. Details will be available at www.kidneywalk.ca 12 Kidney Connect Peer Support Group, Kitchener 12 Kidney Connect Peer Support Group, Niagara – St. Catharines 13 Kidney Connect Coffee Club, Oshawa 25 Kidney Connect Support Group, Mississauga

October 2017 10 11 18 19 26 26 28

Kidney Connect Peer Support Group, Niagara – St. Catharines Kidney Connect Peer Support Group, Kitchener Kidney Connect Coffee Club, Oshawa A Night to Honour Dr. Marc Goldstein, Toronto Celebrity Men in a Fashion Event, London Kidney Connect Support Group, Mississauga Guitar Strings and Kidney Things, 20th Transplantiversary Concert, Hamilton

November 2017 7

14 15 27

Kidney Connect Peer Support Group, Kitchener Kidney Connect Peer Support Group, Niagara – St. Catharines Kidney Connect Coffee Club, Oshawa Kidney Connect Support Group, Mississauga

Ontario Branch 1599 Hurontario St., Ste. 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 kidney@kidney.on.ca African-Caribbean Kidney Association 1-800-387-4474 Ext. 4140 acka@kidney.on.ca Brampton 1.800.387.4474 ext.4120 Brant County 1.800.387.4474 ext. 4130 Central Ontario 1-800-387-4474/905-278-3003 dpiotrowski@kidney.on.ca Chinese Renal Association 1-800-387-4474 Ext. 4977 shukyu.fong@kidney.on.ca Eastern Ontario 613-724-9953/1-800-724-9953 rdewaard@kidney.on.ca Hamilton & District 1-800-387-4474 Ext. 4969 pcook@kidney.on.ca Kingston 613-542-2121 rdewaard@kidney.on.ca London & District 519-850-5362 rramzanali@kidney.on.ca Niagara & District 1-800-387-4474 Ext. 4969 pcook@kidney.on.ca North Bay 1-800-387-4474 Ext. 4110 Northern Superior 807-624-2680 mharms@kidney.on.ca Sarnia-Lambton 519-344-3462 ehayter@kidney.on.ca Sault Ste. Marie 705-949-0400 tmcmillan@kidney.on.ca Timmins-Porcupine 705-235-3233 tpkidney@ntl.sympatico.ca Waterloo – Wellington & District 1-800-387-4474 Ext. 4862 eturney@kidney.on.ca Windsor & District 519-977-9211 emuscat@kidney.on.ca

Spring 2017 / Kidney Living /

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Canadian Publications Mail Agreement # 40011479

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