Kidney Living Fall 2015

Living

KIDNEY Fall 2015 Volume 8 • Number 2

www.kidney.ca/ontario

A PUBLICATION OF THE ONTARIO BRANCH

Fall is the time to chart a new path

contents

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FALL 2015

Editor’s Message: A Fresh Start

LIFESTYLE/PERSONAL STORIES 5 Zita’s Story 6 Dialysis and Me 7 Take Control 10 On the job 12 Fit to Go 19 What does active living mean to you?

20 Funding for Diabetes Supplies

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FOOD AND NUTRITION 13 There’s an App for That!

14 Choosing renal-friendly options at the fall farmers’ market THE FOUNDATION OF KIDNEY CARE/FUNDRAISING 17 Kidney Walk stories 21 Community Highlights 23 Mark This Date MEDICAL RESEARCH/WORKING TOGETHER 8 Dr. Jones and the Puzzle of Cell Signaling 9 Peer Support Survey 16 Career path inspired by son’s experience

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Cover photo credit: iStock.com

Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses t o Tr i s h R e y n o l d s , C o m m u n i c a t i o n s Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:communications@kidney.on.ca.

Phone:1-800-387-4474.

©2015. 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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14 www.kidney.ca/ontario

EDITORIAL

Photo credit: BigStockPhoto.com

The Kidney Foundation of Canada, Ontario Branch 2015 – 2016 Board of Directors

Executive Greg Robbins, President Terry Young, Past President Ken Mylrea, Treasurer Directors at Large Roza Berkowitz Niloufer Bhesania Jill Campbell Leah Carr Debbie Hodgins Craig Kerr June Martin Dr. Judith Miller Remi Ojo Shirley Pulkkinen Susan Storey Harvey Thomson Susan Tkachuk Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003

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S

A Fresh Start eptember, for many, marks the start of a new year. The long summer days begin to fade to make way for new routines and a fresh start. A new beginning or fresh start can represent changes in our day-to-day activities, things we do, or how we act.

The feature articles in this issue of Kidney Living illustrate that a fresh start can be found in making simple changes to the way we eat, exercise and view life. Gloria Schwartz shares how changes to her exercise routine positively impacted her kidney health, while dialysis patients Zita Garon, Greg Verduin and Steven Bailey share how they all are living full and active lives while on dialysis. Kidney disease didn’t mark the end of their story, it’s just one part of their story; and with a fresh outlook, they all live well with kidney disease.

In each issue of Kidney Living, we share tips for living well with kidney disease, and for becoming an active, empowered member of your healthcare team. Each of us is responsible for living a healthy lifestyle, which includes watching our diets, exercising, taking medications, and seeing healthcare providers on a regular basis.

Small changes can make a real difference to how we think, act and feel, so let’s use this change in the season as a time to commit to find our fresh start.  Trish Reynolds, Editor Communications Manager The Kidney Foundation of Canada, Ontario Branch Fall 2015 / Kidney Living /

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PERSONAL STORY

Zita finally achieved her lifelong dream of visiting the late King of Rock n’ Roll at Graceland in May 2012

Another item scratched off her bucket list – Zita at Disney World in January 2015

Zita and her daughter Brigitte on her wedding day in August 2013

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www.kidney.ca/ontario

PERSONAL STORY

Zita’s Story

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y name is Brigitte Woodburn and today, I am going to be my mom—Zita Garon’s, voice. It really makes no difference who tells her story, only that it is heard, parts of it remembered and most importantly—shared with others. We all have the power to change an impending path towards a life without proper kidney function.

That road is a harsh one. It requires strength, perseverance and—dare I say—a touch of heroism. Education on how to prevent kidney failure, and yearly checkups with a family doctor can go a long way in preventing anyone from having to live as my mother does today.

My mom, like most people, was born with two well-functioning kidneys. All through her adult life, she lived with ailments passed down from family genetics such as diabetes, high blood pressure and heart disease. In addition, she smoked for a number of years and like many people—she avoided doctors at all cost.

This avoidance finally caught up with her and in her late 40s, she had no choice but to begin seeing doctors on a regular basis. Her body simply could not go on without it.

I remember well when the signs of kidney failure began to show on my mom—swollen legs (caused by fluid retention), drowsiness, shortness of breath and fatigue. The doctors started talking about dangerous creatinine levels, and how her kidneys were no longer filtering her blood as they should. Finally, on September 14, 2006, when she was 56 years old, she began dialysis treatments three times a week—four-and-a-half hours each session, and has been doing so ever since.

In nine years my mom has missed only one treatment. As of mid-June this year, she has received a total of 1,346 treatments—that adds up to 252 twenty-four-hour days—almost a full year plugged into a machine. This is why, when I first started with her story, I mentioned that dialysis patients require a touch of heroism. Imagine for just a minute that no matter

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what the weather—a flu, your birthday or a holiday—no matter what life brings your way; you had to be at school and/or work every Monday, Wednesday and Friday. No calling in sick, no pulling the covers over your head and sleeping—no exceptions. It is a grueling schedule, filled with endless hours of staring at white walls or sleeping to ward off the boredom.

As with any story, there is always a bright side. Should you be one of those who are unable to avoid renal failure or are living with it today, know that you are not alone and that there are many, many people there to help you: the nephrology teams at our hospitals, family and friends, and organizations such as The Kidney Foundation. They are a fountain of knowledge when it comes to living with kidney disease and are able to help you with everything from nutrition, to dealing with depression, to supporting a little getaway to a cottage in northern Ontario, or even tips on what tax credits might be available on your annual taxes.

Make sure to take time to learn about all of The Kidney Foundation’s services. They are there to help. Stay active and participate in social events when you feel well. Get the rest you need when you don’t. Know that having renal kidney failure is not a death sentence.

You can live a healthy and satisfying life. With proper planning, my mom, my sister and I have been to Bermuda, Graceland and Walt Disney—to name a few places—all in the past nine years. Ask my mom today how she feels, and she’ll tell you she is living some of the best years of her life.

This fall, Zita and her family will participate in the Ottawa Kidney Walk. As the local Kidney Walk ambassador, Zita wants to encourage everyone to come out and support the walks. It’s a wonderful event to meet other patients and walk alongside renal professionals in support of The Kidney Foundation of Canada.  Fall 2015 / Kidney Living /

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PERSONAL STORY

Dialysis and Me We got off to a rough start

by Greg Verduin

Perhaps the first thing I learned was that dialysis was nothing like I thought. Most of my problems with dialysis were borne from the mistaken beliefs I had about how painful it would be.

Originally printed in the Winter 2015 Sunnybrook Sundial publication.

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y first experience with dialysis was in 1984 when I was hired by Abbott Labs to run their Continuous Ambulatory Peritoneal Dialysis Department, or CAPD as we called it.

When it came time for me to have dialysis in 2012, I resisted because I was afraid. My information was almost 30 years old. I had visions of myself tied to a machine. I was getting tired, confused, really forgetful and mentally in a fog. Most of the burden fell on my wife, who could not convince me that I was as sick as the doctors said. The pressure was awful for her. Because of the uremia (build-up of toxins) I was not thinking straight. Finally, in July 2013, with about 10 percent of my kidney function left, I decided to give in.

Perhaps the first thing I learned was that dialysis was nothing like I thought. Most of my problems with dialysis were borne from the mistaken beliefs I had about how painful it would be. Cannulation (inserting the needle into my fistula) does hurt, but not that much and it is over in seconds.

I think probably every patient is ambivalent about dialysis: You wish you didn’t have to have it but you know the alternative is way worse.

Dialysis takes time and if you have an active life it forces you to juggle many balls at one time. For example, I am married, teach full time, have homework and coach girls’ rugby. I am also a union representative. On top of all that, I must fit 12 hours of dialysis weekly into my schedule.

There is of course another side to this. Without dialysis I could not hold a job, or coach, or do anything else. Before I started dialysis, my mind had become muddled, ineffective and forgetful. I could feel the better parts of me fading away. I think my wife had the worst of it. For quite a while I had no idea how bad I was. Looking back, my decline must have lasted years and my wife bore it all. I cannot thank her enough.

The most interesting thing about dialysis is the people. On my shift there are older people, including some who are over 80. Others are young, newly married or still dating, engaged or single. There is a guy who works in a freezer, another man who was a lawyer and teacher in the Philippines. There is a painter from Eastern Europe and a young man with whom I share the hobby of painting and collecting miniature soldiers. I would guess that we have representatives from every continent and many different countries, each with a story to tell.

I would be remiss if I failed to mention the staff. In my experience each one is caring, committed and professional. They are more than tolerant and understanding. Many also have a sense of humour which is so helpful to me. I have the greatest respect for the nurses and the vital role they play with the dialysis patients. Oh yes, and the doctors are pretty good too! ď Ž www.kidney.ca/ontario

LIFESTYLE

Take Control

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Tips for becoming the best manager of your health.

Did You Know?

Your Living with Kidney Disease manual has a set of log sheets for tracking your appointment history, medications, allergies etc.

diagnosis of kidney failure can be scary: new schedules, medications, tests and plenty of medical appointments.

Not to mention learning a new vocabulary: creatinine, hemodialysis, fistula. All of these changes take a toll both emotionally and physically. The most effective way to manage your kidney disease is to be informed and educated. You, after all, can best express how you are feeling.

According to The Kidney Foundation’s Living with Kidney Disease patient manual, you should actively work with your healthcare team to develop a plan that works best for you.

• Give accurate information about your living situation, as well as your physical and emotional well-being.

• Speak up and let your healthcare team know about your concerns.

Never be afraid to ask questions.

• Listen to and follow the health advice and recommendations of your care providers.

• A health diary or journal is one way to keep track of your health information. Use your health diary to record: • Description of any medical events (including symptoms, appointments, follow-up care) • Emergency or urgent care visits, including any hospitalizations • Outpatient procedures such as kidney biopsy, access placement • Surgeries • List of medications • Changes in your physical health and to chart how you are feeling.

• Lab test results • Dialysis treatment schedules and information • Vaccination history including hepatitis B, flu and pneumonia shots.

• Consider also including contact information: • Healthcare team: names, titles, location information, and phone numbers • Emergency contacts: name, relationship, address, and telephone Prepare for medical appointments

How many times have you left your doctor’s office only to realize you have a question that you forgot to ask? Your health diary can be an effective way to prepare for medical appointments and track questions or concerns you may have. Some people get nervous at medical appointments and have trouble finding the right words to describe how they feel. It may be easier to let the healthcare provider read what you have written in your journal to gather information about how you are feeling.

Always bring an up-to-date list of your medications with you to all appointments. Also make note of any allergies you may have.  www.kidney.ca/ontario

Fall 2015 / Kidney Living /

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MEDICAL RESEARCH

Dr. Jones and the Puzzle of Cell Signaling How one student became inspired to be a researcher at her own alma mater

by Jennifer Breese

D

r. Nina Jones had always been interested in science, but it was through undergraduate courses at the University of Guelph, Ontario that her passion for genetics and human disease was ignited. This led her to the University of Toronto, Ontario where she studied gene function in blood vessel development and kidney biology. Her desire to pursue a career in research in an environment where she could inspire future scientists brought her back to her alma mater. Today, Dr. Jones is a molecular biologist and Canada Research Chair overseeing her own research program at the University of Guelph. A major goal of the program is to find a way to reverse kidney cell damage and fight kidney disease.

The Guelph team is studying cell signaling, which Dr. Jones says is like solving a puzzle—figuring out what is connected to what and how individual cells communicate inside the body. She enjoys the challenge of research and the thrill of discovery.

“I’ve always been very interested in determining how genetic connections become disrupted in certain diseases,” says Dr. Jones.

Following these connections led the doctor to study kidney disease. In her

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post-doctoral work she focused on the kidney and a specific cell type known as the podocyte. This cell looks similar to an octopus with “tentacles” that wrap around the blood vessels within the glomerulus, a tiny ball-shaped structure present in nearly one million copies in each human kidney. Together, these cellular projections form a network, which functions as a barrier to filter the blood.

The important podocytes are often damaged in kidney disease. Dr. Jones’s lab is working to understand how those cells are formed and how they help maintain, and in some cases restore, the filtration barrier.

“We look at proteins inside the cell and how they give the podocyte its unique shape, which is important for its filtration function. When certain proteins are mutated or lost, the “tentacles” of the podocyte flatten out or retract. That’s when you get leakage of protein through the barrier. We are focused on how we can modify [the www.kidney.ca/ontario

MEDICAL RESEARCH

podocyte] with the goal of helping patients who are in that early stage of kidney disease,” Dr. Jones explains.

Dr. Jones and her lab have received funding through research grants provided by The Kidney Foundation.

Dr. Jones has also participated in a unique training initiative supported by the Foundation, known as KRESCENT. Aimed at enhancing kidney research capacity in Canada, the KRESCENT program offers highly skilled scientists a national core curriculum focused on transdisciplinary research and knowledge translation, as well as mentorship.

Of the KRESCENT program, Dr. Jones says, “It really has fostered a strong alliance of researchers across the country who collectively focus on

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improving the health of Canadians affected by kidney disease. It was a very enriching and incredibly rewarding experience”.

Dr. Jones says she feels a duty to give back to The Kidney Foundation of Canada and the community because of the opportunities the Foundation’s grant programs have provided. “As scientists, we must assist the public in understanding how their fundraising dollars are used to support research in their communities, and how this research is actually helping kidney disease patients.”

Dr. Jones became involved with the local Kidney Walk after returning to Guelph, and she and her research team participate annually. The team has also

spoken to the kidney community at the Walk and other venues, and has hosted laboratory tours to showcase and explain their research.

When asked about her career path, Dr. Jones says, “As an undergraduate, I never imagined that I would one day be teaching the same courses and carrying out the research that first inspired me. I followed my instincts and worked hard at what I enjoyed doing, and I try to pass this same message along to students when they visit my office for career advice. I couldn’t imagine myself doing anything else now, and I’m very happy and grateful to The Kidney Foundation for its support.” 

Peer Support Survey he Kidney Foundation of Canada and the Ontario Renal Network are interested in learning about any experience you have with peer support.

A survey has been developed to help us improve the support available to you and others affected by kidney disease. If you are a person living with

kidney disease, a caregiver, a kidney donor or recipient, we’d like to hear from you, whether or not you have received Peer Support in the past. Your input is important!

The survey will be available online and within kidney care centres across Ontario. Please visit The Kidney

Foundation of Canada, Ontario Branch website (www.kidney.ca/Ontario) or the Ontario Renal Network website (www.renalnetwork.on.ca) to learn more about how you can share your voice to improve support for people affected by kidney disease. 

Kirk K. a kidney donor recipient and peer volunteer with Humber River Hospital. www.kidney.ca/ontario

Fall 2015 / Kidney Living /

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PERSONAL STORY

On the job The healing benefits of work

by Jennifer Breese

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n 1998, Steven Bailey’s kidneys unexpectedly and rapidly failed over a three-day span. His doctors were baffled and couldn’t determine the cause. He was flown to London, Ontario from Sault Ste. Marie to have both kidneys removed and quickly learned about the life-sustaining treatment called dialysis and how it would become a necessary part of his life.

A Sault Ste. Marie paramedic, Steven could no longer continue in his job.

Fortunately, he was able to switch to a position in the communication department. He tried peritoneal dialysis, which allows a patient to have dialysis without visiting a medical centre, but unfortunately, it wasn’t effective for him. He then switched to in-centre hemodialysis which required travelling three times a week to a local dialysis centre. Because of his dialysis schedule, he was no longer able to work.

In 2004, Steven moved to Toronto. It was during this time that Steven received a kidney transplant. Unfortunately, the transplant lasted only two years.

Again he had to return to dialysis. Steven now lives in his hometown of Sault Ste. Marie and is awaiting the opportunity to train to do home hemodialysis.

It has been a rough road for Steven, one traveled by many renal patients.

Steven believes that road can be made a little smoother when patients are ready to continue to be active in their community through working.

Almost a year ago Steven came across an ad in a local paper placed by March of Dimes Canada for a new program: The Peer Employment Mentoring Program funded by the Ministry of Community and Social Services. He thought this would be a great way to get re-involved in the workplace. As a peer-mentor, Steven works with the Ministry of Community and Social Services Ontario Disability Supports Program and other ODSP Service Providers to connect with the community and share information as an experienced recipient. As part of this pilot program he shares his experience as a person who is working with his disability and who can attest to the benefits of working while dealing with illness, as well as other challenges faced by people who receive income supports from the Ontario Disability Support Program (ODSP).

Steven wants people to know that they can still work while on ODSP, and that the Ministry supports people with medical needs interested in gainful employment. He explains: “Service providers assist you with job development and will work with you and your employer to agree on the most appropriate workplace accommodations.”

Many studies have shown that being in a workplace provides important social interaction and is fundamental to a person’s identity. “If a person is healthy enough, they would feel better working. They feel like a productive member of the community, even if it’s just a couple of hours a week. It’s a big self-esteem boost, being social, volunteering or doing anything. It changes the way you feel about yourself,” says Steven.

Steven wants to encourage others to get out and feel the personal satisfaction that comes with being able to make a contribution to their community through work or volunteerism. As someone who has been in the position of being unable to work for a few years because of his health, he is grateful to the Peer Employment Mentor Project for giving him the opportunity to get back to work.

Steven has noticed a big improvement in the way he feels, now that he’s working once again. The change in him has been noticed by others as well.

Just the other day his nine-year-old son said, “Dad, you smile more.”  www.kidney.ca/ontario

PERSONAL STORY

Working while on ODSP Myth: You can’t work while receiving ODSP benefits Fact: You can work if you are receiving financial assistance from ODSP. You can earn up to $200 a month without having your income support reduced. If you earn more than $200 a month only 50 per cent of your net monthly earnings will be deducted. If you’re attending a secondary or post-secondary school full-time, none of your earnings will be deducted. You will also receive a $100 WorkRelated Benefit.

ODSP offers many services other than income support, including these services under Employment Supports: • help preparing you for work • help finding a job that is right for you • help keeping a job • job coaching • on-the-job training • interpreter/intervenor services • disability related transportation assistance • assistive devices and training to use them • adaptive software and devices that can help you do your job • tools, equipment, special clothing and other items you may need for work • child care expenses

If you have a disability but are not receiving ODSP, many of these supports are still available to you. For more information, speak to a local Service Provider or ODSP worker or visit the Ministry of Community and Social Services webpage at www.mcss.gov.on.ca.

The information provided above 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 advice for your individual questions.

www.kidney.ca/ontario

Fall 2015 / Kidney Living /

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LIFESTYLE

Fit to Go Take charge of your health with lifestyle changes

by Gloria Schwartz

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t age 31, a diagnosis of chronic kidney disease (CKD) left me feeling helpless and scared about my future. My nephrologist prescribed blood pressure medication and advised me to limit my protein and sodium intake. I was under the impression there was little else I could do to help myself.

After losing my job at 42 to corporate downsizing, I started going to a gym for no other reason than to kill time. I’d work out then get a burger, fries and cola at the drive-thru to fuel my junk food addiction and placate my healthrelated anxiety. A year later, my nephrologist told me that I should start seeking a living kidney donor. He estimated I’d be in kidney failure within five years.

Fear about my impending health crisis became my catalyst for change. I decided to take better care of myself so I’d be as strong as possible when my kidneys failed. Little did I know that I was embarking on a journey that would have a profoundly positive impact on my physical and mental health.

I began with a few changes that snowballed into a transformation. I made a commitment to abandon fast food. I eventually gave up soft drinks and made other improvements to my dietary habits. I became very motivated about exercise. I got serious about strength training.

I trained for and ran my first half marathon.

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I researched and expanded my knowledge about diet and exercise.

At my next appointment, my nephrologist came into the room smiling. “Whatever you’ve been doing, keep doing it!” he told me. I’d lost 25 pounds, I was lean and muscular and best of all my kidney test results suggested that my disease was stabilizing. I suddenly felt empowered and the black cloud of despair that had been looming over me for more than a decade lifted.

Eventually, I decided to help others improve their health too. Over the next few years I became a certified personal trainer and a fitness columnist. Last year I published a self-help book about my journey and began giving motivational talks.

Since modifying my lifestyle, my kidney function has remained stable. I’m 51 now and feeling great.

I want everyone who suffers with CKD to understand that lifestyle changes really make a difference. I urge you to begin your journey towards better health right now with a few steps in the right direction. Even if the progression of your CKD doesn’t slow, you can reduce your risks for other diseases and improve the quality of your life.

Get tips and inspiration from my Focus on Fitness column at www.ottawajewishbulletin.com.  www.kidney.ca/ontario

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FOOD AND NUTRITION

There’s an App for That! n this day of advanced technology, more and more people are using smartphones. One survey found that as of 2012, 54.9 percent of Americans own a smartphone.1 While this is American data, Canadians are using mobile technology at a similar rate.

So what do smartphones and nutrition have in common? The answer is “apps,” and not the ones you order in a restaurant. We’re talking about mobile applications on a smartphone that can track your diet. As smartphones gain in popularity, so do the creation of many nutrition apps used for various purposes such

as recipe storage, calorie tracking, and even online support groups. Thankfully for us, a number of renal specific nutrition apps have been developed.

Below is a quick look at some of the apps available for use. Some even have capabilities to connect with your healthcare team and send the info to your dietitian. Always remember that while these are great tracking devices and offer great information, they do not replace the recommendations and advice from your registered dietitian. 

Check out www.kidneycommunitykitchen.ca for additional recipes, tips and tracking tools.

The Pocket Dietitian Cost

KidneyDiet

RENAL TRKRR

MyNetDiary

Free

1.99

7.99

Free

iPhone

iPhone, iPad, Android, Kindle Fire

iPhone, Android

Main focus

Food diary / Food tracker

Food diary / Food tracker

Disease conditions

CKD, HTN, DM

Customizable

ShopWell

Reference: Prest, M (2013) Journal of Renal Nutrition, Vol 23, No 4 (July): ppe83-e85.

Reprinted with permission: Sundial Newsletter (Winter 2015), Sunnybrook Health Sciences Centre Renal Unit.

1

Nutrient Wise

Kidney Diet Recipes

2.99

1.99

iPhone iPhone, iPad, Android, Blackberry

iPhone, iPad

iPhone, iPad

Food diary / Food tracker

Food diary / Food tracker

Comparison Food Shopping

Nutrient Database

Recipe Collection

CKD

CKD, DM

Weight, DM

General health

CKD, DM, HTN, lipids

CKD

Yes

Yes

Yes

Yes

Yes

No

Yes

Calculates nutrition prescription

Yes

Yes

Yes

Yes

No

No

No

Graphs

Yes

Yes

Yes

Yes

No

No

No

Offers food alternatives

Yes

Yes

Yes

No

Yes

No

No

Portion size guide

Yes

Yes

No

No

No

No

No

Email diary/list Yes

Yes

Yes

Yes

Yes

No

No

Miscellaneous Meals or food

Education on: phosphorus, potassium, sodium and fluids

Can track labs and list of medications Can set reminders for meds and appointments

Food bar code scanner

Food bar code scanner

Platform

recommendations Portion guide for all food groups

Free

Photo credit: GEPM Group

by Nada O’Reilly, Renal Dietitian

Can create and add your own recipe

CKD – Chronic Kidney Disease; HTN – Hypertension; DM – Diabetes mellitus www.kidney.ca/ontario

Fall 2015 / Kidney Living /

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FOOD AND NUTRITION

Choosing renal-friendly options at the fall farmers’ market

by Laura Bjorklund MSc, RD

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all is a time for harvests and hay rides—along with lots of fresh autumn fruit and vegetables at local community gardens and farmers’ markets. Creating fresh and flavourful fall meals is possible on a renal diet. A little bit of advance planning and contact with your renal dietitian can be helpful.

Fresh fruit and vegetable availability

In Ontario, fall is a bountiful season for fresh produce. The following renalfriendly fruit and vegetables are harvested during September or October: • Apples • Asparagus • Wax beans • Beets (discard tops as they are high in potassium) • Cabbage • Cauliflower • Corn • Cucumber • Eggplant • Grapes • Lettuce • Onions • Pears • Peppers Reducing potassium in root vegetables

Photo credit: Photos.com

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Many root vegetables such as winter squashes and potatoes contain high amounts of potassium which may not be acceptable for some renal diets. The amount of potassium in these vegetables can be reduced by soaking and/or boiling. The most common method is described below.

It is important to follow the instructions closely to ensure reduction in potassium.

1. Peel and cut the vegetables into small pieces. Place in a large pot.

2. Cover with a large amount of warm water and soak for at least two hours (or overnight).

3. Drain the water off and discard it. Do not save it for making soups or gravies.

4. Add fresh water and boil the vegetables until cooked. Discard the water. Do not save it for making soups or gravies.

5. Mash or fry the vegetables as desired. www.kidney.ca/ontario

FOOD AND NUTRITION

Try the recipe below and savour the flavours of fall.

Autumn Eggplant Casserole

Adapted from www.davita.com Portions: 8 serving size: ½ cup Ingredients • 1 tablespoon olive oil • ¼ cup butter • ½ cup onion • ¼ cup green bell pepper • 5 garlic cloves • ½ teaspoon cayenne pepper • ½ teaspoon black pepper • ½ teaspoon ground thyme • 8 cups eggplant • ½ cup plain bread crumbs • 1 large egg

Preparation 1. Preheat oven to 350° F. 2. Chop onion and bell pepper. Slice garlic and cut eggplant into cubes.

3. In a large skillet, heat oil and butter over medium heat. Sauté onion, green pepper and garlic with cayenne and black pepper.

4. Add thyme and eggplant to ingredients and cook until eggplant softens, stirring often.

5. Reserve 2 tablespoons bread crumbs for topping. Add the remaining bread crumbs to eggplant and cook 15 minutes.

6. Beat egg and add to mixture, stirring quickly so egg does not solidify.

7. Place in casserole dish. Sprinkle remaining bread crumbs over mixture, and bake for 25 minutes.

Helpful hints

• Two medium eggplants yield approximately 8 cups.

• Adjust cayenne pepper to your taste preference.

• Refrigerate or freeze leftover casserole for a quick dish later.

Nutrients per serving Calories 185; Protein 2 g; Carbohydrates 6 g; Fat 17 g; Cholesterol 56 mg; Sodium 100 mg; Potassium 142 mg; Phosphorus 36 mg; Calcium 53 mg; Fibre 1.7 g

For more information on produce available for any season, visit: www.harvestontario.com/seasonal.php 

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Fall 2015 / Kidney Living / 15 www.kidney.ca/ontario

MEDICAL RESEARCH

Career path inspired by son’s experience

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Baby Caleb was diagnosed even before birth

by Jennifer Breese

hen medical researcher Claire Martin was 20 weeks pregnant she was faced with an expectant mother’s worst nightmare. A specialist at McMaster Children’s Hospital in Hamilton told her that her unborn son’s right kidney and the tubes connecting both his left and right kidneys to his bladder had not formed properly.

Claire was devastated to learn that this condition could lead to many complications including hydronephrosis (swelling of the kidneys due to a backup of urine), as well as chronic infections and slowed growth. Doctors told her that he would very likely need surgery within his first year of life.

Fortunately, doctors were able to form an action plan to try and give her child a good start and minimize the invasiveness of his care.

Minutes after his birth, Caleb was put on antibiotics. Over the next year he underwent rigorous testing as multiple specialists across Ontario attempted to better understand the extent of damage his disorder may be causing and to determine the best treatment. Caleb did better than his doctors expected, and when he was four years old, doctors felt he had responded so well that they decided to take him off the medications that had been a constant part of his life since birth. His specialists now feel he can largely lead a normal life without needing to undergo invasive surgery. The biggest challenge for him as a nine-year-old boy is accepting the fact that he is unable to play contact sports because of the risk of damaging his one functioning kidney. While this is a small price to pay for Caleb’s health, it has been quite a hardship for the little guy, as Claire points out, “He can’t play hockey, which is like death in Canada.”

16 / Kidney Living / Fall 2015

Claire’s experiences with kidney disease influenced her career path and she is now a PhD student and researcher working at the University of Guelph with Dr. Nina Jones. Dr. Jones, a microbiologist, has been pioneering research directed towards finding a cure for kidney disease, work funded in part by The Kidney Foundation of Canada. Claire studies cell signalling, trying to learn how communications between certain proteins can help rebuild cells and reverse damage caused by kidney disease.

Claire credits her son’s good prognosis to the work done by researchers before her that enabled doctors to know what was wrong with Caleb’s kidneys and develop a plan of action to combat his condition before he was even born. For now, Caleb’s good health means he is required to have only yearly check-ins with his doctor, as his condition has not progressed to kidney disease . Hopefully, with proper care and healthy lifestyle, it never will.

Claire’s research work is very important to her. She is thankful that Caleb is doing well, but points out that the number of other children filling nephrologists’ waiting rooms is evidence that there are many still in need of help. “Many of these children have congenital disorders where not much is known about the causes,” she says.

“There is so much work to be done.”

One of Claire and Caleb’s strongest and most important supports has always been the kidney community, which includes people affected by kidney disease in many different ways: renal patients, their families and friends, researchers and advocates. The kidney community is supported by the work of The Kidney Foundation of Canada, funded in part by annual fall Kidney Walks. Claire participates in the Guelph Kidney Walk every year, along with all the other members of Dr. Jones’ kidney research team. In 2014, the team raised $3,000.

Claire said it has been particularly helpful for Caleb to see and speak with others facing kidney health problems and to learn about their lifestyles and the importance of staying healthy.

She said this will become increasingly critical to Caleb as he gets older and starts making his own decisions regarding his diet and lifestyle.

Claire wishes people everywhere knew more about kidney disease and its impact. “Kidney disease affects a lot of people and there is a lot more work that still needs to be done,” she says.

“We have a voice and we are doing important work that we are passionate about.”  www.kidney.ca/ontario

FUNDRAISING

K

Kidney Walk stories Celebrating a milestone by supporting kidney research

ingston resident Jason McAdoo is a Champion. Not only has his name topped the leader board as a top Kidney Walk fundraiser for the past few years, he also champions the kidney cause to his friends and family by sharing his personal story. He is recognized as one of the most passionate and supportive walkers in the Kingston area since the inception of the Kidney Walk. Jason is proud to be a part of the walks because he believes in the value of kidney research. He wants to play a role in supporting something that has helped him and will continue to help him and others in the future. For this year’s walk, Jason has gone above and beyond any expectations and is pledging to raise $10,000 in honour of his successful 10-year kidney transplant anniversary. We are so grateful for Jason’s continued support and ask that you check out his inspiring story and donate at kidneywalk.ca.

Photo: Jason McAdoo at the 2014 Kingston Walk, wearing his kidney walk champion shirt, in recognition of the almost $5,000 he raised in pledges.

Jason McAdoo

Walking in loving memory of my mom

Tran family www.kidney.ca/ontario

My dear mother is the reason, inspiration, and the driving force behind my participation in The Kidney Walk. She battled and suffered with kidney disease for more than five years and was on hemodialysis for several years. She passed away on April 16, 2014 at age 82.

My mother was a single mom who emigrated from Vietnam to Canada, raising eight children all on her own with little money and help. She was a brave, loving and kind-hearted woman who was unbelievably strong and positive no matter the hardships, challenges and obstacles she encountered along her journey.

What kept her going, succeeding, and triumphing through all her hurdles were her children.

My mother lived, breathed and sacrificed her whole life for her children, so we could have a better life and future. She never asked for anything in return, except for her children to unite, love one another, and still be strong as a family after she passed away.

Fall 2015 / Kidney Living /

17

FUNDRAISING

I miss her every day and I wish I could have one more moment to be with her and tell her how much I love her. She will forever and always be in our hearts. I may never get that chance to see her again, but I have the opportunity to show her how much I love her by making a difference, giving back and fighting back against kidney disease.

Monica Tran, Hamilton Kidney Walker

Ruchi and her family

Walking for Research

I have participated in fundraising for other important causes, but now it’s time for a cause that is very important and close to me—kidney disease.

I was diagnosed with IgA nephropathy in 2000 (along with high blood pressure). Definitely an unwelcome surprise! IgA nephropathy is a kidney disease that occurs when an antibody called immunoglobulin A (IgA) lodges in the kidneys. This results in local inflammation that may hamper your kidneys’ ability to filter waste, excess water and electrolytes from your blood.

I’ve been fortunate in having it caught early. I am also fortunate that although my kidneys took a “hit” with both of my pregnancies, I have two healthy children, and an amazing medical team at Mount Sinai that literally saved my life. I continue to be followed by my wonderful nephrologist at Sunnybrook. There is no cure, which means that this disease slowly progresses over time. The medications I am on to control my blood pressure and reduce my cholesterol have helped to slow this progression. Exercise and trying to maintain a healthy, active lifestyle have also helped. I have been participating in clinical research at Sunnybrook Hospital with a goal of finding a cause for this particular kidney disease.

Wouldn’t it be great if this disease was not terminal and progressive?

Funds are needed for research into onset, development and treatment of IgA nephropathy and other kidney diseases.

Ruchi Ambike, Mississauga

Donate online at www.kidneywalk.ca or mail in the form below to show your support for our 2015 Kidney Walk.

2015 Kidney Walk Donation Form Mail your completed form to 201-1599 Hurontario StreetMississaua, Ontario L5G 4S1.

Count me in! I want to support the this year’s Kidney Walk Please print clearly

Name ____________________________________________________________________________________ Address __________________________________________________________________________________

City____________________________________________ Prov_________Postal Code______________________ Phone____________________________________Email__________________________________________________ Donation $___________.

All donations are gratefully accepted. Your contribution will help us provide needed services in your community.

Method of Payment: q Cheque

q Visa

q Mastercard

Credit card # _____________/_______________/____________/____________

Expiry_________/__________

Signature _____________________________________________________________________________________

18 / Kidney Living / Fall 2015

www.kidney.ca/ontario

LIFESTYLE

What does active living mean to you?

A

We want your opinion!

ctive Living for Life is a project of The Kidney Foundation of Canada which will create a free, community-based active living program to help get those of you with CKD moving again, and to enjoy some of the physical aspects of your lives that might have been given up as the disease progressed.

The key to the success of this program is that it will be built by patients like you telling us what you want or need in order to become more active.

Your feedback is the essential to creating a great program that will motivate and inspire you. Please take the time to complete the

survey at www.kidney.ca/on/activeliving or contact us for a copy to be mailed directly to you. The pilot program will run during the spring of 2016 in London, Brampton, Sault Ste. Marie and Kingston.

By taking part in Active Living for Life, it is our goal that it may mean a variety of active living successes for patients—that they can participate in sports or get back to the gym.

For others, just having the freedom to play with their grandkids or do their own grocery shopping is a great improvement.

For more information on the program, contact Sarah Hart at 1-800-387-4474 Ext. 4572 or email shart@kidney.on.ca. ď Ž

Photo Credit: BigStockPhoto.com/13902740

www.kidney.ca/ontario

Fall 2015 / Kidney Living /

19

LIFESTYLE

Funding for Diabetes Supplies

T

he cost of diabetes supplies can cause financial hardship for kidney patients who also have diabetes. We have collected information about several programs that can help. See your social worker for additional information on how to apply.

Canadian Diabetes Association (CDA ) Monitors for Health Program 1-800-361-0796

• Open to those who are insulin-dependent or have gestational diabetes; • Covers up to 75 percent of the cost of a meter (or a “talking” meter for those who are visually impaired) once every five years; • Covers up to 75 percent ($820 maximum) for test strips and lancets annually.

• Does not cover syringes.

Assistive Devices Program (ADP) - Syringes for Seniors Program 1-800-268-6021

• Open to those 65 years of age and older;

• Assists with the cost of syringes ($170 maximum annually).

Seniors Covered by Ontario Drug Benefits Program (ODB) 1-800-268-1154

• Open to persons over 65 years of age; • Covers the part of the cost of drugs and test strips if not covered by another program Ontario Works (OW) or Ontario Disability Support Plan (ODSP)

• Persons eligible for OW and ODSP will be provided with Ontario Drug Benefits (ODB), and in addition, the costs of other diabetesrelated supplies will be included in the calculation of living expenses funded; • Covers part of the cost of drugs, needles and syringes, lancets, monitors/meters, test strips if not covered by another program. Note: ODB does not cover all brands of meters and test strips. Check with your pharmacist before purchasing a meter. You must also have already applied for the CDA Monitors for Health Program, if you are eligible.

Trillium Drug Program 1-800-575-5386

• Open to persons under the age of 65 and not eligible for ODB coverage; • Provides funding for the cost of drugs and test strips if they are included on the list of approved drugs for ODB. Funding amount depends on your level of income.

• Does not cover the cost of syringes; Other Programs

You may be eligible for assistance offered through other programs: Department of Veteran Affairs (DVA), Workplace Safety and Insurance Board (WSIB), Department of Native Affairs and private assistance programs offered by pharmaceutical companies (see your pharmacist for details).

Photo credit: BigStockPhoto.com

20 / Kidney Living / Fall 2015

Reprinted with permission from the Chatterbox, Lakeridge Health Renal Newsletter.  www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

community highlights (L-R:) Ryah Kazman, Heidie Kazman, Max Kazman, Andrew Donovan (Kidney Foundation) and Bob Kaye.

Kazman Family Foundation Supports Active Living Pilot Program p Thank you to the Kazman Family Foundation for their support of The Kidney Foundation’s Active Living pilot program.

Celebrity Men in a Fashion event in Kitchener was a smashing success!

There was definitely something for everyone, at The Kidney Foundation of Canada’s Celebrity Men Fashion Event held on June 4. Through the tremendous support of our models who donated their time and talents showcasing fashions from Paul Puncher, we raised more than $21,000, making a difference in the lives of those affected by kidney disease. Thanks to our sponsors Hoyes, Michalos & Associates Inc., Grand River Hospital and BMO Nesbitt Burns who helped make the evening possible, and to everyone who attended. Additional event photos can be viewed at www.kidney.ca/western.

p

Nathalie Randall and Bruce Hill of the Eastern Ontario Chapter hold some of the donated earphones.

Cammidge Family Lemonade Fundraising July, 2015

Thank You WestJet

p Ottawa’s Cammidge family came together with Eastern Ontario Chapter board

WestJet kindly provided 100 pairs or earphones for dialysis patients at the Ottawa General Hospital.

member, Sarah Conway, to stage a lemonade stand that raised over $300 for the 2015 Ottawa Walk. Stopping by for a drink was Agnes Zielinski, Ottawa Hospital dialysis nurse (pictured on the far right).

p

www.kidney.ca/ontario

That’s Sweet!

Fall 2015 / Kidney Living /

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COMMUNITY HIGHLIGHTS

Mary Diemer and Mike Schlater Thanks for your support

Mary Diemer poses with Mike Schlater, CEO of Domino’s Canada, after presenting him with the Community Partner Award at the Windsor and District Chapter’s Annual Appreciation Evening on April 15. Domino’s Canada was also recognized with a Kidney Foundation of Canada National Fund Development Award, presented earlier this year to Mr. Schlater at a National Recognition Evening in Mont Tremblant, QC.

p

Stephen Hughes heads home after treatment at the Belleville dialysis clinic. Volunteer dog Kobi rides with dialysis patients like Stephen to and from treatment to make their trip that day just a little less ordinary. Photo Credit: Kerry McCloy Belleville kidney patient and nurse come together to support The Kidney Foundation

Janet Crosby, a nurse at the Belleville dialysis clinic loves gardening, so she thought, why not combine her love of gardening with the love of her work and the patients she cares for at the Belleville dialysis clinic, and create a local fundraiser for The Kidney Foundation. This past May she gave a truckload of dahlias that she grew to a local patient, Stephen Hughes, who in turned sold all the plants to his network of friends and family. This local initiative helped raise just over $250 for the Foundation. The Kidney Foundation is so thankful for people like Janet and Stephen who go the extra mile to try and make a real difference. For more information on how you can support The Kidney Foundation in your community, check out our community blue builder program at kidney.ca/bluebuilder.

p

Ride for One is a Success

Kidney Foundation Senior Development Manager Andy Donovan (left) receives the proceeds from “Ride for One” event organizers Angie and Steve Mackey.

The first time event was held on Saturday, July 25, 2015 in Caledon, Ontario.

p

22 / Kidney Living / Fall 2015

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

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

September

6-27 Kidney Walks (kidneywalk.ca for more information) 15 Kidney Connect Peer Support Group, Kitchener 16 Kidney Connect Peer Support Group, Thunder Bay 16 Kidney Connect Support Group, Oshawa 20 Artisan Fair, Orleans 24 Kidney Connect Peer Support Group, Niagara 28 Kidney Connect Peer Support Group, Mississauga

October

3-4 Kidney Walks 14 Kidney Connect Peer Support Group, Kitchener 20 Kidney Connect Peer Support Group, Thunder Bay 20 Future of Kidney Care in the Tri-City Area, Kitchener 21 Kidney Connect Support Group, Oshawa 21 Kidney Foundation Transplant Celebration, Ottawa 22 Celebrity Men Fashion Event, London

28 29

Kidney Connect Peer Support Group, Niagara Masquerade Gala, Toronto

November 3 10 15 18 18 23 24 28

Artilicious, Windsor Kidney Connect Peer Support Group, Kitchener Kidney Foundation Country & Western Jamboree, Ottawa Kidney Connect Peer Support Group, Oshawa Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Peer Support Group, Mississauga Kidney Connect Peer Support Group, Niagara Paint Nite, Windsor

December 8 9 16

Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Peer Support Group, Kitchener Kidney Connect Peer Support Group, Oshawa

February 2016 28

CRA Chinese New Year Dinner, Scarborough

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 about 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—visit kidney.ca/ontario and click on the e-news button.

www.kidney.ca/ontario

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 kidney@kidney.on.ca Chinese Renal Association 1-800-387-4474 Ext. 4977 pchan@kidney.on.ca Eastern Ontario 613-724-9953/1-800-724-9953 bhill@kidney.on.ca Hamilton & District 1-800-387-4474 Ext. 4969 kidney@kidney.on.ca Kingston 613-542-2121 kmccloy@kidney.on.ca Niagara & District 1-800-387-4474 Ext. 4969 kidney@kidney.on.ca North Bay 1-800-387-4474 Ext. 4110 csdevost@fibreop.ca 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 Southwestern Ontario 519-850-5362 rramzanali@kidney.on.ca Timmins-Porcupine 705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District 519-977-9211 emuscat@kidney.on.ca Western Ontario (Kitchener/Waterloo) 1-800-387-4474 Ext. 4862 eturney@kidney.on.ca Fall 2015 / Kidney Living /

23

One Strong Voice Tell your federal candidate during the October 2015 federal election there is no reason for 50% of Canadians with kidney failure to die needlessly from kidney failure before they get a kidney transplant.

Ask all federal candidates in your community to commit Canada to increasing kidney transplants & organ donation by 50% before 2020.

Logyn, awaiting kidney transplant

You can make a difference by using our online advocacy tool to have your voice heard.

To learn more, visit www.kidney.ca.

Don’t stand by while 10,000 people die.

The Kidney Foundation of Canada 1-800-387-4474 www.kidney.ca

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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