Living
KIDNEY Fall 2016 Volume 9 • Number 2
www.kidney.ca/ontario
A PUBLICATION OF THE ONTARIO BRANCH
A Better Understanding
contents
FALL 2016
THE FOUNDATION OF KIDNEY CARE/FUNDRAISING 3 Editor’s Message: Take Charge 12 Kidney Walk 2016: Raising more than $750,000! 19 New Patient Handbooks 20 Kidney Camps 21 Community Highlights 23 Calendar of Events
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LIFESTYLE/FOOD & NUTRITION 4 Making Sense of It All 6 Click with Caution 7 Paul and Kim Wright’s Kidney Journey 8 Active Living for Life 10 Look Before You Cook 16 The Kidney Waiting Game MEDICAL RESEARCH 14 Can-SOLVE CKD 17 Dr. Sacha De Serres, Université Laval 15
AWARENESS/VOLUNTEERS 15 A Family Affair 18 Volunteering 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.
©2016. 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 photo credit: iStock.com/74525283
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THE FOUNDATION OF KIDNEY CARE
Take Charge Information is power
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t always strikes me when we begin to put the final touches on the magazine, how a particular theme takes shape and comes to life. Information is power and with that power, we can become an informed and effective member of our healthcare teams. The internet has made information and resources just a simple click away. Haven’t we all, at least once or twice, self-diagnosed a health issue? If something’s wrong, we head to our dear friend Google and when we later visit our physician, we inform them of our diagnosis and await confirmation. The story, Use Caution When looking for Health Information on the Internet, is a good reminder of how we can take steps to ensure that the information we access is trusted and reliable (page 6). A key goal of The Kidney Foundation’s public benefit is that every person living with or touched by kidney disease feels empowered to maximize their health outcome. Central to meeting this goal is ensuring that all Canadians living with kidney disease have the knowledge to make choices about their health care, and the tools and information to self-advocate effectively. Self-advocacy refers to a person’s ability to communicate, convey, negotiate effectively, or assert his or her own interests, needs and rights. It also involves making informed decisions and taking responsibility for those decisions. Working with nephrology specialists, The Kidney Foundation has compiled a great tool chest of resources and information that’s available right at your fingertips. From fact sheets and brochures to the newly revised Living with Kidney Disease handbook (page 17), to custom websites like Kidney Community Kitchen, information is free for the taking. But how you choose to use the information is up to you. Do you review your lab results with your healthcare practitioner and ask questions if there are changes? Do you take the information provided by your renal dietitian about phosphate additives and shop accordingly (see pages 10-11)? Do you stay on top of your health care and take charge to be your own best advocate, as Paul Wright recommends in his personal story (page 7)? Seek information, ask questions and make informed decisions. It is you, after all, that has the power to be your own best advocate. Enjoy. Trish Reynolds, Editor Communications Manager The Kidney Foundation of Canada, Ontario Branch www.kidney.ca/ontario
The Kidney Foundation of Canada, Ontario Branch 2016 – 2017 Board of Directors
Greg Robbins, President Roza Berkowitz Craig Kerr Michael Mastrionardi Ken Mylrea Sonya Solman Susan Storey Harvey Thomson Susan Tkachuk Dr. Gordon Wong 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 Fall 2016 / Kidney Living /
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LIFESTYLE
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Making Sense of It All
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Understanding Your Lab Work
by Trish Reynolds
This article is intended as a general introduction to this topic and is not meant to substitute for your doctor’s or health professional’s advice. Please consult a healthcare professional for specific treatment recommendations.
f you’re living with kidney disease, you are likely on a first name basis with some of the lab technicians in your community. Thorough testing in the form of blood work and tests on your urine ensures that your healthcare team has a good understanding of what is going on in your body, and then using that knowledge, they can carefully develop the necessary plans to treat you. Kidney health is typically measured through time and is generally not dependant on a single test or number. Information is a powerful thing. For the informed patient, new technology has made results like lab work readily available with just a few clicks of a mouse. But what does it all mean? How should it be interpreted? Each year, we receive dozens of calls on our information and referral line from patients and loved ones, concerned about their lab results and seeking information and guidance on what the results mean. It is possible to have a result that is out of range and at times this can be due to a medicine you are taking, eating before the test, stress or a number of other factors. When your numbers are higher or lower than the numbers in the reference range, your doctor may choose to repeat the test. Every person is different, and results should be reviewed and discussed with your healthcare team. Here is an overview of some of the most common lab tests your doctor may order for you. Your lab report will contain the reference ranges your lab uses.
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LIFESTYLE
Sample: Transplant Recipient Test Result Form (Note: your reference ranges may be different). Test
Sample Result
FLAG
Reference Range
Glucose fasting
5.9
3.6 - 6.0 mmol/L
Sodium
144
135 - 145 mmol/L
Potassium
4.5
3.5 - 5.2 mmol/L
Urea
14.0
Hl
2.7 - 8.4 mmol/L
Creatinine
134
Hl
67 - 117 umol/L
eGFR
49
Calcium
2.20
2.15 - 2.60 mmol/L
Phosphate
0.90
0.80 - 1.45 mmol/L
Urate
555
Total Protein
65
60 - 80 g/L
Albumin
44
35 - 52 g/L
Hl
Your Personal Target
230 - 480 umol/L
Tests for kidney function and damage Glomerular Filtration Rate The estimate (or percentage) of kidney function is called the glomerular filtration rate (GFR). Sometimes the GFR is also referred to as the estimated glomerular filtration rate (eGFR). Glomeruli are the tiny blood vessels in the kidney that help to filter waste. The GFR is a way of measuring how well the kidneys are working by determining the rate at which the glomeruli are filtering waste products from your blood. The eGFR is the most common way to measure kidney function at kidney clinics. Changes to your eGFR will help your physician determine how fast or slow your condition is progressing. The KDIGO 2012 guideline highlights the importance of using both the eGFR and the ACR, expressed as the ratio of urine albumin to creatinine, in screening, diagnosis, and management of CKD. Creatinine is a waste product made from muscle use and the breakdown of protein you eat. Urea is a waste product from the breakdown of protein. Albumin is a protein that, if present in the urine, may indicate damage to the kidneys.
Blood tests for vitamin and mineral levels Calcium is a mineral that is important for bone growth and body function. Phosphorus (phosphate) is a mineral in many nutritious foods. The kidneys regulate it in the body fluids. At normal levels, it keeps bones strong and healthy. At high levels, it causes painful joints, and bone disease. Potassium is a mineral that is normally removed from the blood by healthy kidneys. Too much or too little potassium can be dangerous. A very high level can cause the heart to beat irregularly or even stop. Sodium is a mineral in the body fluids that increases thirst and is regulated by the kidneys. Sodium affects the level of water retained in the body tissues. www.kidney.ca/ontario
Keep in Mind 1. Don’t Stress. If you access your results online, you may from time to time see a result flagged as HI or LO. Don’t stress about this immediately as there may be reasons for a change. Your medical team is most likely looking at trends and high spikes or low results may not be representative of your overall health. 2. Know your target. Instead of focusing on what is considered “normal,” ask your doctor to provide you with a personal target. If your results continue to miss the target, use it as an opportunity to discuss what modifications to health and lifestyle could be made and what the impact would be on your kidney function. 3. Be prepared. You are an important member of your healthcare team. Prepare for appointments by writing down a list of questions never be afraid to ask, inquire and seek clarification.
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LIFESTYLE
Click with Caution
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Not all health-related websites are created equal
he Internet can be a good source of health-related information. However, since individuals, groups and organizations can easily create their own websites and post any information they want, even if it’s not accurate, it’s important that you check the information and make sure that you can trust it. Also, you should verify that the information is right for your situation. For example, information about adult kidney disease may not be appropriate for parents looking for information about their child’s illness. You should ask yourself some questions about the website before deciding to use the information you find there.
• Who supports the website? Who maintains it? Who pays for it? • How current is the information? Does the site post the date and when it was last updated? • If the information on the site is not original, does the site provide references about the source of the information? • Does the site display the name/logo of the institution or organization responsible for the information? • Does the site display the author’s name, qualifications and credentials, if relevant? • What is the purpose of the site? Is it to give you information or to sell you a product? Is the site a vehicle for advertising? • Is the information balanced or more one-sided? • Does the site post links to other appropriate sites so you can read more? • Is there a way to send comments and feedback on the site?
( T his information is printed with permission from The “How to” Health Guide, available free online on the Health Charities Coalition of Canada website at www.healthcharities.ca.) Source: Living With Kidney Disease Book 1 Chapter 6.
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PERSONAL STORY
Paul and Kim Wright’s Kidney Journey by Trish Reynolds
P
aul and Kim are a match made in heaven—literally! It was 2002 when Paul was diagnosed with ulcerative colitis. With regular check-ups and medication, he lived with this condition for many years with no known complications. Little did he know that the medication that treated the effects of colitis was silently damaging his kidney function. A phone call from his specialist in 2010 sounded an alarm and set the Wrights on their kidney journey. “Finding out the medication I was on for so many years potentially caused a toxicity and destroyed my kidneys with no chance of recovery, was the moment I decided to take my own health care as a priority in my life,” said Paul. “I needed to understand what was going on with my body. I researched everything there was to know about my condition and fought for copies of my blood work and questioned every decision and recommendation.” Times have changed, “Today you can retrieve your bloodwork results online, giving you the chance to review the results and prepare to ask any questions at your next appointment,” recommends Paul. Words like peritoneal dialysis, hemodialysis, transplant and nephrologist became part of their new vocabulary, and Paul and Kim took the steps to learn all they could about “the enemy” named kidney disease. “For me, learning about this truly silent disease gave me comfort,” said Kim. “Having a plan for the future h e lp e d g i ve m e strength to support Paul and our daughwww.kidney.ca/ontario
ters through this journey.” “I had moments of disgust, fear, joy, sadness and anger,” said Paul. “My job required me to have a medical that ensures I could survive sleeping on an iceberg with a nacho chip and a licorice to survive. Since dialysis would surely prevent me from being able to do my job, I was concerned how I would support my family. How would I continue to do the things that a healthy father can and should do with his daughters? I had to accept this as the hand I was dealt. I put on my poker face and challenged my opponent by going all in. Kidney disease was not going to rule my life but my life will rule my kidney disease!” As Paul and Kim continued to navigate this journey with kidney disease and discuss potential treatment options, Kim decided that she wanted to be tested to become a living donor. One night, sitting alone, Kim worked through the scenarios in her mind of what the future might look like. “How sick would Paul be on dialysis, thoughts of him being limited in any way from being the amazing father that he is to our two daughters resulted in countless tears,” said Kim. It was in that moment that Kim decided she wanted to be tested to be a living donor. Thankfully, Kim sailed through the many tests and nine months later the couple learned that Kim was approved to become a living kidney donor. July 24, 2013 has a special place on the calendar. It is the day that Paul received Kim’s kidney—his new “girlie part” as he calls it—and thankfully that “girlie part” began working immediately. Today, Paul is thankful for his health and lives each day to the fullest. “I pay attention to my body and am not shy about asking questions. I respect that the medical professionals have training, but I know that I too have to be proactive about my own health and my own advocate.” Fall 2016 / Kidney Living /
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LIFESTYLE MEDICAL RESEARCH
Active Living for Life Pilot Program Update
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by Sarah Hart
he Active Living for Life program was designed specifically to help kidney patients with their healthy lifestyle and exercise goals. The program, made possible by grant funding through the Ontario Sport and Recreation Communities Fund and the Kazman Foundation for Charitable Giving, ran in Kingston, Sault Ste. Marie and Brampton as six-week pilot sessions throughout the past year. It was a great opportunity for patients to come together to share common goals of improving their fitness levels and supporting each other through the challenges that come with living with chronic kidney disease. Many participants saw marked improvement in their overall fitness levels and best of all, they had more energy for other activities they enjoy. Stay tuned as tips and resources for active living will be made available at www.kidney. ca/on/activeliving. We want to thank all our partners who made this project possible and to all the instructors and participants who took part in the pilot program. Thanks for the dedication and enthusiasm you brought every day!
DOs and DON’Ts from Patients for Getting (and Staying) Active
1. Do use the buddy system: You are more likely to keep your scheduled exercise times if you have a friend waiting for you, and it’s more fun. They are there to motivate and encourage you and you can do the same for them. 2. Don’t sweat the setbacks: If you have an unexpected setback due to illness or injury, take the time you need to recuperate and then gradually get back to your routine. Taking a break doesn’t have to mean giving up. 3. Do things you enjoy: Find something you
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enjoy doing that keeps you active and build it into your weekly routine. If you don’t like the activity you will find excuses not to do it. 4. Don’t overdo it: Take things slow at the beginning until you feel comfortable increasing the intensity of your activity. Doing too much too fast can lead to injury and cause setbacks in your goals. 5. Do change it up: Go out into the community and try that activity you have always been curious about. Take a tai chi class or Nordic walking for beginners and you may just discover a new passion.
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LIFESTYLE MEDICAL RESEARCH
Here’s what they’re saying…
We spoke to a number of participants and trainers involved in the pilot about their experiences and thoughts about Active Living for Life. Their answers are inspiring.
If you were to share one thought about the project, what would it be? “Extend it as much as possible and make it virtually automatic as a progression from first diagnosis of renal failure through to dialysis.” “I have found that since I started this program I’m getting strong and more steady on my feet.” “Excellent! This program is a great way to help renal patients get moving again. It has motivated me to be more active. I feel I have more determination to continue on in physical activity.” “This program should be provided to patients when they are first diagnosed with CKD because when in the disease you’re tired more often than not. Make it a routine to do before dialysis starts, to make it a part of life and a part of treatment.”
Sandra Lee Muncaster, an Active Living for Life Program participant: “It is important to be active even as a patient, because as a dialysis patient you are tired a lot so that exercise may not be your priority. But I felt after I left that class, after 45 minutes to an hour of light exercise, I could actually do more, I felt like doing more instead of saying, “Oh well, I’m going to go and have a nap.” “I can hear one of the girls, Jenna, who was a real firecracker, full of energy and very positive. I can hear her voice in my head “You can do it! You can do it!” I can go back and I have all of the course material so I know what I’m doing and I try to continue.”
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What do you feel that the project has done for you? “It has definitely given me courage to do things physically. Now I know how and what I can do. I’ve also seen other improvements in balance, strength and posture, and also for me, in the confidence that I can do these exercises on my own.” “My legs, back, shoulders are feeling really good.” “It has given me more energy and a better outlook on life. I feel better prepared to get up each day and face the challenges I need to face.” Fall Fall 2016 2016 // Kidney Kidney Living Living //
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FOOD AND NUTRITION
Look Before You Cook
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Navigating the Food System to Avoid Potassium and Phosphorus Additives by Nada O’Reilly, Registered Dietitian
renal diet can be one of the more difficult diets to follow. One of the more challenging aspects of the diet is the widespread use of food additives in the food system. In particular, phosphorus and potassium additives are increasingly being used in food products. To add to the challenge, food companies are not required by law to label the amount of phosphorus or potassium on the nutrition facts panel, therefore the presence of these additives can easily go unnoticed. There are so many foods that are already restricted because they are naturally high in phosphorus, and now with the use of phosphate additives, choices are further restricted. Why should we concern ourselves with phosphate additives? Phosphorus additives are highly absorbable, meaning that more phosphorus gets into your blood from an additive than from a natural source of phosphorus. Why does this matter? A high level of phosphate in the blood can cause itching, joint pain and hardening of the blood vessel walls or calcification. Facts about phosphorus and potassium additives • Phosphorus additives are used in packaged and processed foods for the following reasons: o Stabilize food products o Intensify taste o Emulsifying agent (keeping a food product mixed)
o Anti-caking agent (keeping powders from clumping together) o pH buffer (maintaining the acidity of a food product) o Inhibit growth of yeast, fungus and bacteria • With the increased use of food additives and consumer use of convenience and fast foods, the estimated intake of phosphate additives has more than doubled since the 1990s. • Potassium additives have been recently approved by Health Canada for use in fresh meats. • Potassium additives are often used in “low sodium” products as a replacement for the salt. A common potassium additive used is potassium chloride because it offers a similar “salty” taste. Given these barriers, how can one ensure they are following a low phosphorus and low potassium diet? Outlined below is a guide to navigate the complicated food system to help you avoid additives.
Step 1: Cook fresh
Before reaching for a package, try to make the same food or meal from scratch. The best choice is always unprocessed freshly-made meals. Inspiration for easy-to-prepare quick meals can be found at www.kidneycommunitykitchen.ca.
References Health Canada. Bureau of Chemical Safety, Food Directorate, Health Products and Food Branch. (June 7, 2016). Health Canada’s Proposal to Enable the Use of Potassium acetate and Potassium Diacetate as Preservatives in Meat and Poultry Products. Leon, J.B., Sullivan, C.M. and Sehgal, A.R. (2013). The Prevalence of Phosphorus-Containing Food Additives in Top-Selling Foods in Grocery Stores. Journal of Renal Nutrition, Vol. 23, No. 4 (July), pp. 265-270. Ritz, E. et al. (2012). Phosphate Additives in Food – A Health Risk. Deutsches Arzteblatt International, Vol. 109, No. 4, pp. 49-55. Sherman, R.A. and Mehta, O. (2009). Phosphorus and Potassium Content of Enhanced Meat and Poultry Products: Implications for Patients Who Receive Dialysis. Clinical Journal of the American Society of Nephrology, Vol. 4, pp. 1370-1373. Uribarri, J. and Calvo, M.S. (2003). Hidden Sources of Phosphorus in the Typical American Diet: Does it Matter in Nephrology? Seminars in Dialysis, Vol. 16, No. 3, pp. 186-188.
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FOOD AND NUTRITION
Grocery Shopping with a Dietitian
Step 2: Know how to read a food label
It may not be realistic to think that you will be eating 100 percent fresh foods and preparing everything from scratch. For that reason, it is important to know how to choose your food. While the amount of phosphorus and potassium is not required to be listed on a label, the presence of an additive is. Read the ingredient list to find out if there are additives in the food product. Words to look for on the ingredient list: • Phosphoric Acid • Sodium Phosphate • Disodium Phosphate • Polyphosphate • Pyrophosphate • Monocalcium Phosphate • Tri-calcium Phosphate All of the additives have “Phos” in their name. If any of these names show up on the ingredient list, you know that the food item has a food additive. Try to steer clear of that product and if possible choose an alternative without the additive.
Step 3: Speak to your Registered Dietitian
If you are unsure if a food is safe, you can always speak to your dietitian. They are there to help you make good food choices.
Step 4: Call the Company
Companies have precise nutrient breakdowns of their products and can sometimes tell you the exact amount of phosphorus or potassium in their product. Additionally, if they hear from you that you cannot choose their product because of the food additive, it may help companies to take notice. If enough people voice a concern, perhaps in time changes can be made to our food system. Remember, companies want to please their customers. www.kidney.ca/ontario
Five items to include in your grocery cart 1. Red, yellow and green peppers Low in potassium, high in vitamin C and A. They are a versatile vegetable that can be served hot or cold, stuffed or added to salads. 2. Boneless skinless, low sodium canned salmon High in omega-3 fatty acids, canned salmon is an affordable way to eat fish. Can be used for sandwiches, added to pasta or made into fish cakes. Make sure to find the boneless can to avoid the high phosphorus bone. 3. Popcorn A high fibre snack that is also low in potassium and phosphorus. Air popped with Mrs. Dash and it makes a satisfying snack. 4. Fresh and dried herbs Jazz up your meals without the use of salt or salty sauces. Fresh and dried herbs pack a flavour punch. Bring out the flavour in dried herbs by heating them slightly in your cooking pot before adding your food. 5. Frozen blueberries Low in potassium and high in antioxidants, blueberries are a sweet treat that are also quite versatile. Add to cereal, low phosphorus muffin or pancake recipe, or just as is. Frozen blueberries are convenient to keep on hand.
Five items to remove from your grocery cart 1. Frozen, boxed meats, chicken, fish or proteins that are “seasoned” Most of these items contain phosphate additives, and now may even include potassium additives. It’s best to buy these proteins fresh and season them yourself. Just be careful, since “seasoned” proteins may also appear where fresh meats are sold. Read all labels. 2. Coffee Whitener Years ago coffee whitener used to be the suggested substitute for milk or cream in your coffee. Nowadays they are being manufactured with phosphate additives (used as an anticaking agent for the powder). A drop of real milk or unfortified rice beverage is typically a lower phosphorus choice. 3. Prepared salad dressings Most salad dressings are loaded with sodium. A lower sodium and lower cost alternative would be to mix oil and vinegar with a dash of Dijon mustard into a jar and shake it until combined. You can make a batch and store it in your fridge for the same convenience as a store bought dressing. 4. Canned soup Even the low sodium varieties pack a huge sodium punch. If you are watching your fluid intake you must also account for the fluid from the soup as well. Furthermore, creamy soups are high in phosphorus. 5. Frozen or boxed breakfasts (e.g., waffles, pancakes, muffins) Most baking mixes, frozen waffles and pancakes contain baking powder (high in phosphorus) as well as phosphate additives. Instead, find a lower phosphorus recipe, make a large batch and freeze it yourself. When you are ready to eat it, you can pop it in the toaster or microwave for the same convenience as the processed ones. Fall 2015 / Kidney Living /
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FUNDRAISING
Raisi $750
Kidney Walk 2016
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You came, you walked and you took steps to create a future without kidney failure
hank you to the many participants, volunteers and donors for your support of the 2016 Kidney Walk. We are thrilled to announce that through your generous spirit we raised over threequarters of a million dollars to help those touched by kidney disease. Walks were held in 40 communities across the province over four weeks in September and October. Thousands of participants came together to fundraise and help create a future without kidney failure. “We are thrilled by the outpouring of participants and by the generosity of people across the province in helping us to exceed our goal with the Kidney Walk this year,” said Greg Robbins, president of the Ontario Branch of The Kidney Foundation. “Kidney disease is a growing problem across the country, and I think this shows a commitment to helping those already diagnosed, and funding research to help improve the outcomes for those living with and most at risk for kidney disease.” Thank you to national sponsor Otsuka Canada Pharmaceutical Inc., provincial media sponsor YES TV, T-shirt sponsor Entripy Custom Clothing and the many local and regional sponsors who supported the event through sponsorships and gifts in-kind. “All of the funds raised from this event go directly into helping kidney patients, those who are living with it today and those who will be diagnosed in the future,” said Robbins. “We want to thank everyone who walked, donated or volunteered.”
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FUNDRAISING
ing more than 0,000!
www.kidney.ca/ontario
Fall 2016 / Kidney Living /
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MEDICAL RESEARCH
Can-SOLVE CKD
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Kidney patients drive the research in innovative initiative to overcome kidney disease by Kyle Brown
BigStockPhotos.com
ho better to determine the important research questions that will most benefit kidney patients than the patients themselves? That’s the thinking behind a unique cross-country initiative that The Kidney Foundation is proud to support, making research that is both real and life-changing for patients. The “Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease” (Can-SOLVE CKD) research network brings together the entire kidney community, including patients, policy makers, clinicians and the very best kidney researchers in Canada. This community will work collaboratively to design and implement a new program that will solve key issues related to treating and preventing chronic kidney disease in people from diverse cultural backgrounds and across all ages. It’s patient-centred research and it’s necessary to building real, applicable results that make a difference, according to Dr. Adeera Levin, one of the principal investigators. “Patients with kidney disease have often been excluded from clinical research due to the complexity of their condition,” said Dr. Levin. “Our patient partners are ensuring that we maintain focus on the questions most important to them and create a culture change that not only respects the unique perspectives of patients, but allows them to participate in all aspects of study design, execution and
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implementation.” The ultimate vision of Can-SOLVE CKD is to ensure the right patient receives the right treatment at the right time—regardless of age, sex/gender, location or ethnicity. The initiative will ensure that, by 2020, every Canadian with, or at high risk for, kidney disease will: • receive the best recommended care, • experience optimal outcomes, and • have the opportunity to participate in studies with novel therapies, regardless of age, sex/gender, location or ethnicity. The network will aim to increase screenings for kidney disease and diabetes within Indigenous communities and to improve risk assessment for the four million Canadians with CKD in order to ensure preventive therapies and other treatments are given to those at highest risk of cardiovascular and kidney disease, among other goals. “Our goal is bigger and bolder than we ever imagined it could be, but we know we must think big and act quickly to meet the needs of kidney patients now and in the coming years,” said Elisabeth Fowler, Director of Research. The Kidney Foundation has committed $3.8 million towards the research network, which is one of five Strategy for Patient-Oriented Research chronic disease networks supported by the Canadian Institutes of Health Research (CIHR). Interested in learning how you can make a donation to Can-SOLVE CKD? Contact Bruce Hill, Director of Philanthropy, Major Gifts and Individual Donors at 1.800.387.4474, Ext. 4560.
www.kidney.ca/ontario
AWARENESS
A Family Affair When kidney disease moves in by Trish Reynolds
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t’s no secret that the diagnosis of disease or a health condition affects the entire family. The person living with the disease, their children, partner and extended family are all impacted. But for thousands of Canadians living with polycystic kidney disease (PKD), a genetic form of kidney disease, that impact spans generations and affects the family in profound ways. More than 20 years ago, Craig Kerr learned that he had cysts on his kidneys—the result of a hereditary form of kidney disease called PKD. “At the time, neither of my parents showed any signs of kidney disease,” said Craig. “Both my parents had ultrasounds and they discovered that my father had PKD. Like many people with chronic kidney disease, he had gone through his entire career as a firefighter, never knowing that he had PKD.” Four out of the five Kerr children inherited PKD which now effects three generations of their family. “Being one of six people in the family with PKD hasn’t changed any of our relationships, but it does give us something to talk about. It’s like having a built-in peer support group,” shared Craig. It has also prompted the family to get involved and become active volunteers with their local chapter of The Kidney Foundation. PKD is the most common inherited disease of the kidneys. Autosomal dominant PKD (ADPKD), the most common form of PKD, will be passed to the child of an affected parent 50 percent of the time. The progression of the disease is generally quite slow, while many cysts develop on the kidney. As those cysts expand they slowly damage the kidney. Not everyone with PKD will go on to develop kidney failure.
www.kidney.ca/ontario
Karen’s Story
p Craig Kerr with
The long term effect of PKD on the family is something Karen Whitford relates to. At age three, Karen’s father passed away as a result of PKD. Back then, there was no treatment for him. “It was devastating,” said Karen. “My mother was left with five children and very little resources to care for us. We really had no idea at the time what a significant impact his disease would continue to have on all of us.” Karen’s oldest brother was the first to lose his kidney function 18 years ago and thankfully received a kidney transplant from his wife. Next it was Karen’s older sister Sharon who faced a diagnosis of PKD. Then brother Hugh. Karen was not affected, so when the time came she stepped forward to become a living donor to her sister Sharon. As overwhelming as kidney disease has been to Karen’s family, she can’t help but see the incredible improvements in the treatment of kidney failure and how it has changed over the generations. “My father had no hope; my siblings have had more opportunities to manage their disease through home dialysis and transplants. Today, my nieces and nephews have even more treatments available to them in the form of new medications which may mean the delay of end stage kidney disease.” The Kidney Foundation of Canada is committed to raising public awareness about PKD and the impact of kidney disease. The Kerrs, along with Kidney Foundation President Paul Kidston and his family, are featured in two new Kidney Foundation videos about the impact of kidney disease. View the videos at www.youtube.com/kidneytv.
his niece, sister and daughter
“…it’s like having a builtin peer support group”
Fall 2016 / Kidney Living /
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PERSONAL STORY
The Kidney Waiting Game It’s important to maintain hope by Kyle Brown
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ngela Dutrisac spent nearly a decade on the waiting list for a new kidney. Each year that passed, it became harder and harder to remain hopeful. “Why is mine taking so long?” Angela wondered. “I was beginning to think the day would never come.” This past spring, just a few months short of 10 years of waiting, Angela received the call. “You get the call and you don’t believe you actually got the call,” she said. “I was speechless, I didn’t answer. The woman on the phone said it again. She asked if I could be at the hospital within an hour. It happened so quickly. You’re waiting for it for so long, getting all of the tests done, and then it happened so fast. I was crying when she called, but happy tears this time.” Angela was first diagnosed with kidney disease when she was just 22. She was able to manage the disease with medication and a special diet, but in 2006 she was told she would have to begin dialysis. Her youngest son was just two at the time, and she had three other sons at home whom she needed to care for. “I cried when I first went on dialysis,” she said. Currently, there are nearly 10,000 Ontarians who rely on life-sustaining dialysis treatments. Over 1,000 people in the province are waiting on a kidney transplant list. Of all people waiting for organ donation in Ontario, 77 percent are waiting for a new kidney. Dialysis treatments are often required multiple times per week, and treatment can last for hours. Treatment can often make patients lethargic and overwhelmed with fatigue. Plus, the time commitment necessary for treatment makes it difficult to work full-time or organize social outings to help provide a break. In just the few short months since her trans-
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plant, Angela is already noticing big differences in her health. “I’m able to do a lot more things now. There’s still a tiredness, but it’s not fatigue, like you feel on dialysis,” she said. “Even just walking. Now when I walk, I power walk. Before I was moving around like a slow turtle.” Her emotional state has also improved since the transplant. “I feel wonderful,” she says. “It’s like I have a whole new life.” Throughout her treatment, Angela’s family provided a strong backbone of support. Knowing they were there and behind her helped keep Angela going, especially as the years of waiting continued to climb. Now she’s enjoying spending time with her husband and four sons. “I can play basketball and soccer now with the kids. I don’t have to tell them that I have to stop now. I might just rest for a half hour, and then I can start playing again,” she said. “And I don’t have to worry about being plugged in at a certain time, so if we run a little bit longer spending time together, it’s not a big deal. Before, dialysis restricted me. I had to work it into my schedule.” This fall, Angela participated in her ninth Kidney Walk, raising money to help make a difference and work towards a future without kidney disease.
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MEDICAL RESEARCH
Dr. Sacha De Serres, Université Laval
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His observations as a medical resident led him to pursue a ground-breaking research career by Elisabeth Fowler acha is a nephrologist and researcher interested in understanding why some people reject their new kidneys after transplantation while others do not. As a resident completing his medical degree, he was very affected by one patient in particular: a young woman died after her kidney transplant due to a severe fungal infection. The hospital ran a number of tests and discovered that she had too much immune-suppressant in her body. (After an organ transplant, the patient must take drugs to suppress their immune system, so that the organ will not be rejected.) This experience spurred Sacha to work in this area, to learn more and help other patients avoid these types of complications. “I thought once you had a transplant you were home free, but it turns out that there are many side effects and complications.” Sacha went to Boston to continue his studies at Harvard. “I was very interested in trying to prevent the severe adverse side effects.” He hopes that his work will eventually lead to the production of new medications that will have fewer side effects for transplant patients. In Boston, Sacha expected to work with T cells—the cells in the body known to impact immunity. As he started to work, he discovered instead that the important players in rejection are monocytes (a type of white blood cell that fights bacteria, viruses and fungi) in the innate, or natural immunity: “They seem to activate in people with rejection, and they are not affected by today’s immunosuppressant drugs.” The antirejection drugs on the market today target T cells, producing side effects. “But we may be missing the target. We may be pushing too much on the T cells when perhaps we should be exploring the innate immunity and monocytes.” Now Sacha studies both the T cells and the innate immunity in the blood simultaneously to
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address this balance. He hopes to find a better way to tackle monocytes and perhaps personalize each patient’s immunosuppression regime. Sacha leads a research program where he follows patients who have received a transplant for three years and collects these individuals’ blood at 13 different time points. He also takes three biopsies over the course of the three years to see what is happening in the new kidney and in the blood of these patients. Sacha likens doing research to planting a fruit tree in your back yard: it takes time and patience to see the results, for your research to bear fruit. “You need to convince teams, convince an ethics committee, then get funding, a year to recruit the patients, then three years to get the samples, and then finally five years later you get your results and can begin doing analysis.” Sacha was a KRESCENT new investigator and also received a KFOC Biomedical grant. Thanks to this funding, he and his team have been able to follow patients for three years and are now able to start analyzing the data they have collected. Early results are promising: it seems that they are able to predict which patients may become over-immunosuppressed. Patients whose “innate immunity” is activated (not everyone will activate this system) are set up for worse rejection over time. Thanks to his KRESCENT grant, Sacha was able to go to Boston to “develop my toolbox as a researcher.” The KRESCENT award also ensured that he had 75-80 percent of his time protected to do research—a big deal not always easy to achieve in today’s competitive hospitals and universities. The protected time allowed him to set up his lab and to put in place the infrastructure needed to keep up his work—or in his words “to be able to see the tree.” Now he looks forward to analyzing the results of all the previous work to see what kind of fruit will come from his research.
“I thought once you had a transplant you were home free, but it turns out that there are many side effects and complications.”
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VOLUNTEERS
Volunteering
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It’s about more than helping the greater good. by Kyle Brown
he benefits of helping are endless, whether that’s feeling a sense of purpose or acquiring new skills for your career. We spoke to two volunteers to gather their thoughts on what keeps them motivated. Craig Lindsay has been volunteering for the past three years, doing everything from peer support at the Scarborough Hospital, helping with The Kidney Foundation’s Scarborough Kidney Walk and sitting on various committees for provincial organizations. Just four years earlier, Craig’s kidneys failed. As a newly-diagnosed patient, Craig started participating in the local peer support program. That life experience provided him the motivation to get involved in the group. “I felt an obligation to help that new wave of patients,” Craig said. “You hope that your experiences can benefit others, and others can learn from the mistakes you’ve made.” Craig says that his devotion to continue volunteering is born out of an obligation he feels due to the support he felt when first diagnosed. “For me, I still have kidney disease. The peer support program served as an emotional support that I felt I needed,” he said. “Now I can return that support and model my behaviour based on that. I like to see others coping well with kidney disease.” Christina Paruag volunteers with The Kidney Foundation while she completes her degree in Medical Physics. She started volunteering in high school and has been with the Foundation for about a month. She decided to work with the Foundation after dealing with the pain of a series of kidney infections and is inspired by helping others who deal with that pain on a daily basis. “I feel good when I help someone else,” Christina said. “I feel like I’m accomplishing something when I volunteer.” Christina is preparing to apply for graduate school. She understands that beyond giving back, volunteering also helps to develop skills and meet new people, especially for young people interested in getting involved. “I think it would help in applying to programs, if you’re a high school student going to university or if you’re in university and want to do a Masters, it’s an advantage,” she said. “You learn communication skills, business skills, get exposed to the health sector and you can make connections.” The Kidney Foundation of Canada is always looking for volunteers. To see if there’s an opportunity to become involved, visit our website www.kidney.ca/volunteeropportunities or contact Megan Heeney at mheeney@kidney.on.ca or 1.800.387.4474, Ext. 4979.
t Top: Craig Lindsay and his family.
Bottom: Christina Paruag
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SERVICES AND SUPPORT
New Patient Handbooks Book One
LIVING WITH REDUCED KIDNEY FUNCTION
5th Edition
n World Kidney Day, March 10, 2016, The Kidney Foundation of Canada celebrated the launch of its newly-revised and updated Patient Handbooks, Living with Kidney Disease. The fifth edition of the Handbook has been divided into two books: Book One: Living with Reduced Kidney Function and Book Two: Living with Kidney Failure. Most people do not progress to end-stage kidney disease, especially if they are diagnosed early and are able to take steps to preserve their remaining kidney function. The Handbook was split into two to prevent those in the early stages of kidney disease from being overwhelmed with information about treatment options intended for those in the later stages. Book One, Living with Reduced Kidney Function, is intended for people whose primary care provider or nephrologist has identified kidney damage with either normal or reduced kidney function. It provides information on how kidneys work and focuses on delaying the worsening of kidney function and preventing end-stage kidney disease through lifestyle choices such as diet, exercise and medication management.
Produced by The Kidney Foundation of Canada
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Book Two, Living with Kidney Failure, is intended for people with progressive kidney disease who require further information regarding treatment options. It provides information on dialysis, transplantation and conservative care. It also covers advance care planning and practical matters such as working, finance and insurance. Both books feature colour-coded chapters with helpful tips, highlights, pictures, icons, space for notes and a summary of key points to make it easier to find the information. This handbook includes some actionplanning tools and log sheets where people can record important information about various aspects of their health and treatment. There is a glossary, which includes words and terms found in the text, and a medication chart at the back of the book. The Handbooks, provided free of charge to patients, are typically distributed to patients through healthcare professionals working in renal units. Since 1993, when the patient information manuals became a core national program, it is estimated that the Foundation has distributed more than 80,000 of them across Canada. Interested in taking a peak at the new handbooks? They are also available online at www.kidney.ca/ on/LWKDhandbook.
Produced by The Kidney Foundation of Canada
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“The two book format is a fantastic idea and will certainly prove to be more beneficial and less overwhelming for patients and families. A great addition to the array of other supports from The Kidney Foundation.”
Krista Helferty, Nephrology Social Worker, Renfrew Victoria Hospital www.kidney.ca/ontario
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WORKING TOGETHER
Kidney Camps Did You Know? • The Kidney Foundation supports every patient attending Camp Dorset. Two hundred dollars is contributed to Dorset for every dialysis patient who attends camp. Additional subsidies are also provided to patients in need. • Camp Kivita is an independent summer camp for children with solid organ transplants – heart, kidney, liver, lung and bowel transplants, as well as those living with organ failure. The Kidney Foundation contributes $20,000 to Camp Kivita annually and has been a partner in supporting it since the camp’s inception in 2009. • Camp Dorset has a dialysis unit onsite with 16 machines in order to provide guests in renal failure with their dialysis three times a week. • Kidney Foundation volunteer, Murray Sutherland, is a keen supporter of Camp Dorset. Murray collects pop tabs in his hometown of Sarnia and delivers them to Dorset each year. Last year there were 110 lbs. of pop tabs. This year there are even more! • There are 14 three-bedroom cottages and 15 efficiency units. The efficiency units are essentially self-contained bachelor apartments at Dorset. • Over 60 children from across Ontario attended Camp Kivita this year. • The Kidney Foundation assisted 201 families to attend Camp Dorset this year.
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COMMUNITY HIGHLIGHTS
community highlights
40th Annual Charity Pro Am Proceeds benefit SODA (Sarnia Organ Donors Awareness Group) and The Kidney Foundation’s SarniaLambton Chapter t Congratulations and thank you to the Sarnia
Charity Pro Am for their continued support. Over the last 12 years $236,000 has been raised with proceeds split between The Kidney Foundation and SODA.
Kazman Family Foundation Golf Tournament a Swinging Success
The Kazman Classic is an annual golf tournament, held in memory of Marty Kazman. The Kazman Family Foundation is a proud supporter of The Kidney Foundation’s Active Living Pilot Program. Thank you to Max, Heidie and their many volunteers and supporters for contributing to The Kidney Foundation in such a meaningful way. Front row, L-R: Jim Trainor, Pro Am Committee; Connie Ellis, SODA; Elaine Hayter, The Kidney Foundation, and Michael Hearse, GM, Sarnia Golf & Curling Club Back row, L-R: Jamie Parkinson, Head Pro SG&CC; Paul Lane and Bill Woods, Title Sponsors, TD Wealth; and Bruce Davie, Pro Am Committee. p
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London’s Celebrity Men in a Fashion Event was the Hottest Ticket in Town
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Thank you to the many guests, models and our volunteer committee for helping to make London’s Celebrity Men Fashion Show such a success. We’re thrilled to report that more than $70,000 was raised! Pictured above, Nephrologist, Dr. Faisal Rehman with student dancers from All 4 One Company in the opening act dance. Fall 2016 / Kidney Living /
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COMMUNITY HIGHLIGHTS Sidney the Kidney visits Stratford School
Organ Donor Swim Supports Camp p The inaugural organ donor swim on Saturday July 30 was an incredible orchestration of passion, commitment and effort: • Passion to raise awareness broadly for the issue of living organ donation; and specifically for event organizer, Ricky Jacobs to highlight his father’s (Paul Jacobs) need for a kidney. • Commitment from our swimmers who donated their time to swim 30 km across Lake Muskoka; and • Effort from our incredible sponsors and remarkable volunteers who made the swim day so successful. Thank you to Ricky Jacobs for organizing this special event and to the many supporters and swimmers who contributed to the event’s success, raising more than $10,000.
t Grade 6 students at Avon Public School welcomed kidney pancreas transplant recipient Jay Moon and Kidney Foundation representative, Evelina Turney, for a special presentation about kidney health and organ donation. The presentation took place on the same day that Grade 6 student Jensen’s father, Frank, received a kidney from her mother, Katarina.
Bollywood u The Kidney Foundation hosted a Bollywood world music experience featuring superstars Salim-Sulaiman at the Living Arts Centre in Mississauga in September. The concert was a wonderful way to connect with the South Asian community to raise awareness of the risk of kidney disease. Salim Merchant speaks to guests at the VIP reception meet and greet.
Order of the Eastern Star p The Kidney Foundation of Canada
Eastern Ontario Chapter was a beneficiary of a donation of $6,735 from the Grand Chapter of the Order of the Eastern Star. Funds raised were in support of chapter programs including organ and tissue donation awareness. L-R: Accepting the donation on behalf of The Kidney Foundation is Bruce Hill, with Roberta Hall, Worthy Grand Matron and Angus Strong, Worthy Grand Patron of the Grand Chapter of Quebec, Order of the Eastern Star
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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.
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
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Jingle Bowl, Toronto Impressions 2016, Hamilton Silver Bells Christmas Market, Sault Ste. Marie Patient and Family Christmas Party, Windsor Kidney Connect Peer Support Group, Kitchener Renal Dine & Learn – A Cooking Program, Scarborough Kidney Connect Peer Support Group, Niagara – Welland Kidney Connect Peer Support Group, Thunder Bay Renal Dine & Learn – A Cooking Program, Scarborough Kidney Connect Coffee Club, Oshawa
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Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Support Group, Mississauga Pasta Fest, Sarnia
March 2017 – Kidney Health Month 7
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Kidney Connect Peer Support Group, Kitchener Artilicious, Kitchener Kidney Connect Peer Support Group, Niagara – St. Catharines Kidney Connect Coffee Club, Oshawa Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Support Group, Mississauga
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Kidney Connect Peer Support Group, Kitchener Kidney Connect Coffee Club, Oshawa Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Support Group, Mississauga Kidney Connect Peer Support Group, Niagara – St. Catharines
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CRA Chinese New Year Dinner, Scarborough Kidney Connect Peer Support Group, Kitchener Kidney Connect Coffee Club, Oshawa Kidney Connect Peer Support Group, Niagara – Welland
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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 Niagara & District 1-800-387-4474 Ext. 4969 pcook@kidney.on.ca North Bay 1-800-387-4474 Ext. 4110
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Brant County 1.800.387.4474 ext. 4130
Northern Superior 807-624-2680 mharms@kidney.on.ca 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—kidney.ca/ ontario/e-news.
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 2016 / Kidney Living /
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Your Support Does Make a Difference
Your generosity provides hope and support to thousands of Canadians living with kidney disease. Please consider making a gift to The Kidney Foundation with the enclosed donation envelope or online at www.kidney.ca/donate. 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