KIDNEY
living www.kidney.ca/ontario
Spring 2011 Volume 4 • Number 1
A PUBLICATION OF THE ONTARIO BRANCH
Maria-Jose Bouey Blogging her journey
What’s in this issue – Spring 2011 3 4 5
Paying It Forward
6 7
Tax Tips
Online Lifeline Windsor Nephrologist Committed to Making an Impact Kidney Foundation Endorses Ontario Health Study Kidney Health Promoted in Ottawa
8 10 13 14
A Perfect Match
15 16 17
The Magic of Galabration 2011
20 21
Exercise Your Rights
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Rural and Northern Health Report: Stage 1
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Community Highlights
Editing, design and printing by GEPM Group Inc. www.gepmgroup.com
Life for 1,500
Kidney Treatment Options CSA Approved Founder of Italian Night Dinner Passes Away What a Wonderful World International Kidney Meeting Comes to Canada
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Don’t Pass the Salt, Please
Inspirations: Kingston Chapter Inspiring Community for 30 Years
Cover photo credit: Patrick McConnell
©2011. Kidney Living, the contents of which is subject to copyright, is published three times 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, please contact Trish Reynolds, Editor at treynolds@kidney.on.ca or 1-800-387-4474 Ext. 4981. Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses to: Trish Reynolds, Communications Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:treynolds@kidney.on.ca. Phone:1-800-387-4474.
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The Kidney Foundation of Canada, Ontario Branch 2010-2011 Board of Directors Executive Harvey Thomson, President Peter Davis, Past President Richard Harvey, Treasurer/Secretary Directors at Large Hélène Beaulieu Dr. Ann Bugeja Margaret Hanlon-Bell Christine Jowett Craig Kerr Doug Parsons Tim Phillips Brian Porter Marlene Smith Terry Young Dr. Jeffrey Zaltzman Micol Zarb Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003
Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca COMMUNITY CONTACTS Central Ontario 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca Chinese Renal Association 1-800-387-4474 Ext. 4962 Eastern Ontario 401 - 1376 Bank St., Ottawa K1H 7Y3 613-724-9953/1-800-724-9953 eob@kidney.ca Hamilton & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 ncharette@kidney.on.ca Kingston 100 Stuart St. Kingston, ON K7L 2V6 613-542-2121 alabrash@kidney.on.ca Niagara & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 ncharette@kidney.on.ca North Bay 705-476-3715 hopkins_andrew@hotmail.com Northern Superior 605 Hewitson St. Thunder Bay, ON P7B 5V5 807-624-2680 kidney@tbaytel.net Sarnia-Lambton 546 Christina St. N., Main Floor Sarnia, ON N7T 5W6 519-344-3462 ehayter@kidney.on.ca Sault Ste. Marie 514 Queen St. E., 2nd Floor, Suite 1 Sault Ste. Marie, ON P6A 2A1 705-949-0400 ssmkidney@shaw.ca Southwestern Ontario 379 Dundas St., Suite 119 London, ON N6B 1V5 519-850-5362 kidney@execulink.com Timmins-Porcupine 11357 Hwy. 101 E. Connaught, ON P0N 1A0 705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District 1368 Ouellette Ave., Suite 310 Windsor, ON N8X 1J9 519-977-9211 kidney@mnsi.net Western Ontario (Kitchener/Waterloo) 379 Dundas St., Suite 119 London, ON N6B 1V5 1-800-667-3597 btrinh@kidney.on.ca www.kidney.ca/ontario
Photo credit: BigStockPhoto.com/11574458
PERSONAL STORY
Paying It Forward by Mary Baxter
Caroline Lloyd www.kidney.ca/ontario
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wenty years ago, when she received her first kidney transplant, Caroline Lloyd knew there was a strong possibility that the kidney would not last the course of her lifetime. The possibility became reality last year when the Toronto resident and long-time Kidney Foundation volunteer learned it was failing. Her husband, Anthony, volunteered to donate one of his kidneys. They had the same blood type, but “I had too many antibodies so we were not a match,” says Caroline. She feared she might have to undergo dialysis again for a considerable amount of time waiting for another donor. “At my age, 67, and already having had a kidney for 20 years, I would have thought that maybe it wasn’t likely that I would get another kidney any time soon,” she explains. But Caroline gained new hope after her nephrologist at St. Michael’s Hospital renal transplant program told her about the Living Donor Paired Exchange Registry. The registry was established in Ontario, British Columbia and Alberta in 2009 and became nation wide in October, 2010. It is a partnership between the Canadian Blood Services and transplant programs across Canada and helps match patients who have found a willing but incompatible donor with others facing the same circumstances. The registry also lists non-directed donors—people who have expressed a willingness to donate without a specific recipient in mind. In Caroline’s case, it took a chain of six people—three donors including her husband and three recipients including Caroline—to establish compatible matches. All of the operations took place at St. Michael’s Hospital late last year. Caroline and Anthony were released at the same time and the couple prepared for the dual recuperation period by stocking the freezer before-hand, etc., and having help from family and friends. “You need help if there are two of you both coming out of hospital at the same time,” Caroline notes. That she could go from one kidney straight to another “was absolutely wonderful,” Caroline says. “My husband donated to somebody else but in fact he was able to improve two lives, not only mine, but that of his recipient.” Chris Brennan, a spokesperson with the Canadian Blood Services, says there are 185 donor/recipient pairs listed on the registry along with 20 non-directed donors. So far, 65 people have been able to remove their names from the deceased donor waiting list because of the registry. “Those are people who would probably still be on dialysis today but for the registry, so it’s a pretty significant improvement,” he says. This fall, the blood services will launch a highly sensitized kidney registry for those who are more difficult to match, such as people who have undergone a previous transplant and have developed antibodies. “People that tend to die on a kidney wait list—typically the majority of them—come from the highly sensitized grouping,” Brennan explains. “So by developing a registry specifically for this we hope to facilitate more transplants for those people.” Spring 2011 / Kidney Living /
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COVER STORY
Online Lifeline Maria-Jose Bouey, 23, is waiting for her second kidney transplant. She has been video-blogging about the experience for the past year. This is her story. by Maria-Jose Bouey
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was born in Santiago, Chile, and by the age of six months was getting used to my new home in Toronto, Canada. At birth I was diagnosed with a rare congenital abnormality called Cloacal Extrophy. In non-medical terms, most of my abdominal organs and lower back were in one way or another damaged or under-developed. The doctors told my young parents that the only hope for my survival was Sick Kids Hospital. Six months later, there I was. It was a road that led to more than 40 major operations including bladder reconstruction, various types of ostomies, spinal surgery and my life-saving living donor kidney transplant from my mom. Not only did Sick Kids save my life, it gave me a new outlook on life. Sick Kids started documenting every step of my kidney transplant journey through video, pictures and words. I became a full-blown 12-year old public speaker, Sick Kids ambassador and poster child. The schedule was busy, but it helped keep my spirits high and my mind busy. Within a week of receiving my transplant in April, 2001, I was roller-blading and hanging out with my friends. That summer I was back at Camp Dialysun—a camp supported by The Kidney Foundation—for the second time, reconnecting with friends I had met the summer before. Water skiing, tubing, camp-outs, and sneak-outs—the summer was filled with great health and more love and joy than ever before. For almost 10 years, I lived a dialysisfree lifestyle, with work, school, friends... and medical issues in the background. Little did I know that this would all come to a halt. Just over a year ago, my donated kidney suddenly failed overnight. My levels were through the roof. Within the week, I was back on dialysis. I was in shock. Panic set in. What did I do wrong? How could I fix this? Why did this happen? I didn’t know how to take control of my life and put things into perspective. This led me to my blog. I didn’t want to sit around and watch as time passed
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without people knowing the reality of kidney failure. As my first admission to emergency occurred, I began filming off my little MacBook. I didn’t actually know what I was doing or why, but I felt the need to put all my feelings out where maybe just one person would understand. And it might help someone else in the process. My friends and family soon started following my blogs posted on YouTube. There was a demand for more info and news. Stories, inspirations and responses from people in similar situations started flowing from cyberspace. My fear was replaced with the confidence and strength that I was gaining from others. Initially, all I wanted to do was spread the word of the need for organ donation in Canada. I started collecting data and sharing information. It quickly became clear that people were unaware of the great need for kidneys. For example, the wait was up to nine years for someone with my blood type, unless a living donor could be found. I was just one of thousands of people in Canada waiting for a kidney. So there I was; 23 years old, sitting on hemodialysis three days a week for countless hours wondering if and when my time for a kidney will come. Like everyone on dialysis, my activities were limited and revolved around dialyzing. I didn’t feel 100 percent all the time. I make the best of my situation when I am “hooked up” to my dialysis machine that I affectionately named “Herbert my boyfriend” (who, I might add, is very needy and demanding.) I blog and I have visitors. My family and friends have come to learn the routine and enjoy “Herbert’s” company while I try to live my life as normally as possible. But it is the furthest from normal. It’s not life, it is dependence. It is survival. It’s the only option until I get a kidney. Then an amazing thing happened to me last August. My cousin and my friend both decided to be tested to be living donors. The light at the end of the tunnel was back, and I was over the moon. Even if they were not matches, they still tried
and have given me hope until the actual transplant could happen, and that in itself has been amazing. My cousin is a match and now he is going through his own life-altering journey as he sheds some weight in preparation for the surgery. But that is another story. Now, we are just waiting for the date. As the journey continues, I continue to type, blog and post pictures of the sad but beautiful reality that is organ donation in Canada. I will not stop because I believe everyone deserves a fighting chance at life.
If you would like to follow MJ’s blog or view her previous postings, you can see them online at http://mjbouey.tumblr.com.
www.kidney.ca/ontario
KIDNEY HEALTH MONTH
Windsor Nephrologist Committed to Making an Impact For over a decade, Dr. Albert Kadri, a Windsor nephrologist and chief of medicine at Hôtel-Dieu Grâce Hospital, has advocated for kidney health. by Jeremy Renaud
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Dr. Albert Kadri
www.kidney.ca/ontario
hough one might think that outside of his responsibilities at the hospital there would be no time to engage the community and volunteer his time and efforts toward reducing the burden of kidney disease, it is indeed quite the contrary. Dr. Albert Kadri is both the founder and chair of the Dunks for Dialysis charity fundraiser, which produces over $30,000 annually with proceeds benefiting kidney patients throughout Essex County. It came as no surprise—both the enthusiasm and excitement that the Windsor and District Chapter exhibited—when he confirmed his involvement in several chapter initiatives during a recent meeting. His ambition was summarized in his can-do attitude and optimistic approach, outlined in three powerful words, “Let’s do it!” said Dr. Kadri. “Dr. Kadri, as well as the other area nephrologists, have always been an integral part of the Foundation,” said Mike Brennan, Fund Development and Chapter Manager for the Windsor and District Chapter. “Through collaboration and dedication, he has always maintained a positive outlook as to what the hospital and our Foundation can achieve together. Dr. Kadri will spearhead many initiatives locally as the honorary chair for the March Drive campaign through Kidney Health Month, a keynote speaker for World Kidney Day, an integrated member in other potential chapter initiatives and support lead events which will be determined throughout the course of the year. Born and raised in Windsor, Ontario, Dr. Kadri completed his medical school training at the University of Western Ontario. He subsequently specialized in internal medicine and completed fellowship training in nephrology at the University of Western Ontario. He has been the Chief of Nephrology at Hôtel Dieu-Grâce Hospital since 2006 and is now also the Chief of Medicine. He has recently been elected the President of the Essex County Medical Society for 2011. Dr. Kadri’s clinical practice focuses on providing optimal medical care to kidney patients in our community. “I believe that The Kidney Foundation is an invaluable resource to patients and family members within our community dealing with kidney-related health issues. I look forward to working in conjunction with The Kidney Foundation through initiatives that are important for advancing awareness and care in our community for kidney patients,” says Dr. Kadri. An exciting year is ahead for the Windsor and District Chapter as it continues on its mission toward make an impact in the community while supporting the vision of the Foundation: kidney health, and improved lives for all people affected by kidney disease.
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WORKING TOGETHER
Tax Tips Get the most out of your 2010 tax return
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very year during tax season, The Kidney Foundation prepares general tax tips for patients to help you with completing your tax returns.
Disability Tax Credit The Disability Tax Credit is a non-refundable tax credit that reduces the amount of income tax that may be owed by people with disabilities or the people who support them. The credit will reduce your income tax payable if you qualify. If you have no tax payable, you may transfer the credit to a spouse or other supporting person. We recommend that all dialysis patients apply for the Disability Tax Credit. Important note: The Disability Tax Credit Certificate (T2201) must be completed by a qualified health practitioner. In Part B under the category of Life Sustaining Therapy, we suggest your doctor answer yes to the question: “Does your patient meet the conditions for life-sustaining therapy?” and specify the “type of therapy” as kidney dialysis to filter blood.
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Medical Expense Tax Credit The Medical Expense Tax Credit is a nonrefundable tax credit that can be claimed for a variety of medical and related expenses such as health care services, travel expenses, drugs, dental services, health insurance and home renovations to install a hemodialysis machine. The following are items that are included in the Medical Expense Tax credit: • Medical expenses • Drugs and health products • Transportation and meals • Home dialysis • Kidney dialysis machine and costs relating to the machine • Fees related to organ transplants Out-of-country expenses over and above provincial coverage may also be included. You can claim expenses for yourself, for your spouse, and with some limitations, for your other dependants. With some exceptions (see transportation) you must have receipts for all your expenses. You may also qualify for a refundable medical expense supplement
for working individuals claiming high medical expenses. For a complete Ta x Tip package including detailed information, templates and sample letters, visit our website at www.kidney.ca/taxtips, or speak with your Renal Social Worker. The Canada Revenue Agency (CR A) also provides detailed instructions for claiming the various tax credits and deductions that are available. These can be obtained from the CRA web site www.craarc.gc.ca, through your local tax services office or by calling 1-800-959-8281. While we make every effort to be accurate, we strongly encourage you to consult with a tax professional for your individual questions.
www.kidney.ca/ontario
MEDICAL RESEARCH
Kidney Foundation Endorses Ontario Health Study
On Ontario Health Study Ét Étude sur la santé Ontario
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he Ontario Health Study is inviting all Ontario residents aged 18 and older to join a research initiative that will investigate the risk factors for the most common diseases. The Kidney Foundation of Canada, Ontario Branch, has endorsed the Study and are proud to support its objectives. The Ontario Health Study is the largest study of its type ever attempted in Canada and it is poised to become one of the largest in the world. It will give researchers an unprecedented source of data that could help guide the development of new prevention, diagnosis and treatment strategies for cancer, heart disease, diabetes, asthma, Alzheimer’s and other common conditions. Participants will represent Ontario’s geographic and ethnic diversity and its findings will be used to benefit people throughout the province and the rest of the world. In the past, population-based health studies have discovered links between smoking and lung cancer, and between diabetes and heart disease. In recent years, advances in information technology have made it possible to study larger numbers of people while advances in biology have opened up entirely new avenues of research. By taking a few minutes to fill out this online questionnaire and agreeing to be contacted occasionally for follow-up questionnaires, you can help Ontario make a major research contribution with international significance. We encourage you to consider joining the Ontario Health Study and spreading the word to your family and friends. On average, it takes just 17 minutes to sign up and complete the questionnaire. Participation is entirely voluntary. To learn more, visit www.OntarioHealthStudy.ca.
Kidney Health Promoted in Ottawa
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hanks to the generosity and financial support of the GlaxoSmithKline Foundation and assistance from Bayer, The Kidney Foundation was able to offer the services of the Kidney Health Centre to the Ottawa community in December. The centre, staffed by Foundation employees and registered nurses, visited a number of locations in Ottawa throughout the month of December, including the Woodroffe Avenue Campus of Algonqiun College, an Ottawa 67s hockey game, and the Ottawa Athletic Club. The Kidney Health Centre was very popular at each location. Participants had their blood pressure and blood glucose levels checked. Those participating were offered a variety of educational materials about kidney health, prevention of kidney disease, and the importance of living a healthy lifestyle.
Get Kidney Living via email Did you know you can now receive Kidney Living by email? You’ll receive the same great content as the print version and you’ll get it a few days earlier. Receiving this newsletter electronically also assures the Foundation can keep costs low by decreasing printing and postage expenses. To change your subscription to an email version, simply send your name, current mailing address, telephone number and email address to grose@kidney.on.ca. Please put “Change Kidney Living Subscription” in the subject line.
www.kidney.ca/ontario
Your Story is Worth Sharing How has kidney disease impacted your life? Share your inspiring story and we may feature it on our website or in Kidney Living.
Email us your story in 300 words or less and include a high resolution photo!
communications@kidney.on.ca We are eager to read about you!
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ORGAN DONATION
A Perfect Match Living Donor Paired Exchange Registry helps kidney patients get the transplants they need. by Debbie White, Public Affairs OTDT Coordinator for Canadian Blood Services
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anadians are overwhelmingly supportive of the idea of organ and tissue donation, and in fact thousands of people benefit every year from life-saving or life-improving transplants. Despite this support, Canada’s donation rate compares poorly to other developed countries, and has remained relatively flat over the past decade. Last year, 249 Canadians died waiting for a transplant. As diabetes, heart and kidney disease rates continue to climb, the demand for transplants is growing, as are the transplant wait-lists. Recognizing a need for improvement, in April, 2008 the federal, provincial and territorial governments asked Canadian Blood Services to lead the design of an integrated system to improve organ and tissue donation and transplantation (OTDT) in Canada. The organization’s experience in operating a nationally-integrated delivery system, as well as the trust earned with Canadians, were prime reasons for the selection of Canadian Blood Services for this task. As part of this mandate, Canadian Blood Services was asked to develop a registry that would help facilitate more kidney transplants. While dialysis treatments have saved countless lives worldwide, it does so at a price, both economically and in terms of quality of life. Many patients are unable to Power of Domino Exchange work, and can spend upwards of 40 hours a week undergoing treatment. Of the 65 transplants completed to date: In January, 2009 the Living Donor Paired Exchange (LDPE) Registry was 10 from Paired Exchanges launched as a pilot project in British Columbia, Alberta and Ontario. Since then, 51 from Domino Exchanges it has expanded to include all provinces, including Quebec, making LDPE the first Canada-wide organ donation registry. The LDPE Registry facilitates transplants between recipients with a willing 4 from N-Way Exchanges but incompatible living donor, and other pairs in the same situation. These “incompatible pairs” are entered into the Registry and a complex computer algorithm then These 51 were completed over 16 different domino identifies opportunities for exchanging exchanges ranging from 2 to 5 transplants each. donors. The first surgeries took place in June, 2009 and since then, 185 donor-recipient pairs and 20 non-directed donors (those December 8, 2010 willing to give a kidney to anyone in need) 4 from across the country have registered.
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www.kidney.ca/ontario
ORGAN DONATION As of December, 2010, 65 transplants had taken place, removing 65 people from dialysis treatment, giving them an improved quality of life while saving millions of health-care dollars annually. In addition, the registry has celebrated some other important milestones of late, including: • the first LDPE surgeries performed in the province of Nova Scotia • the first patients in Saskatchewan, Nova Scotia and Newfoundland and Labrador receiving transplants; and • matches and transplants for highly sensitized patients To learn more about the Living Donor Paired Exchange Registry or to locate the nearest hospital that has a Living Donor Kidney Transplant Program, please visit www.organsandtissues.ca/english/ldpe.
Life for 1,500 National Organ and Tissue Donation Awareness Week aims to raise organ and tissue donation awareness.
www.kidney.ca/ontario
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ore than 1,500 Ontarians are on wait lists for life-saving organ transplants and thousands more need tissue transplants to live their lives to the fullest. They are living with the hope that their transplants will take place because somewhere in the province a person has chosen to save a life by giving his or her consent to organ and tissue donation. We know that as a community, Ontarians are generous and feel the obligation to protect and preserve lives. We also know that only 17 percent of Ontarians had registered their consent to donation as of March 31, 2010. We’re sure that there are many more people who are willing to give consent who just haven’t registered their consent because they don’t know how important it is to register their decision or how to register. The time to change that is now. During National Organ and Tissue Donation Awareness Week (NOTDAW) 2011, April 17–23, we will join together to provide hope and life for the more than 1,500 on wait lists. Let’s encourage more Ontarians to register their consent to organ and tissue donation with ServiceOntario, in person or by mail. The Kidney Foundation of Canada, Trillium Gift of Life Network and the Liver Foundation will be joined by other community organizations dedicated to organ and tissue donation to hold Life for 1,500 events in communities across Ontario. Events are already confirmed for Ottawa, St. Catharines, Sarnia, Thunder Bay and Windsor. Watch for listings at The Kidney Foundation of Canada, Ontario Branch website pages at www.kidney.ca/ontario to find out how you can be more involved in our events. Website content will highlight those who have received the gift of life. At events, people will learn more about someone from their own community who is waiting for the gift of life. These people will share their stories and encourage people to consider registering their wishes. Early in March, Trillium Gift of Life Network will post on its website instructions on how to hold your own Life for 1,500 event before or during NOTDAW. Visit the TGLN website www. giftoflife.on.ca for information and instructions and please let us know about your plans as well by emailing details to communications@kidney.on.ca.
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LIVING WELL
Kidney Treatment Options Questions you might have but are afraid to ask. by Shirley Pulkkinen, MSW, RSW
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n the Fall 2010 edition of Kidney Living, there was an article about choices—the need to be informed and educated about making the right choice for yourself when it comes to treating kidney failure. Choosing which type of treatment you want can be one of the scariest things kidney patients face, particularly if you don’t yet have symptoms of uremia (itching, fatigue, nausea, vomiting). But it is an important decision which puts you on the right care path to avoid delays and emergencies. In this article, we will go a step further in looking at some of the questions many patients and their families have about hemodialysis (HD) or peritoneal dialysis (PD), including some that may go unasked.
What does a catheter look and feel like?
Shirley Pulkkinen is a Registered Social Worker who has had the privilege of working in nephrology for over 20 years in Northern Ontario. She is Past President of the Canadian Association of Nephrology Social Workers (CANSW) and is currently The Kidney Foundation of Canada, Ontario Branch, representative on the Steering Committee for the newly-formed Ontario Renal Network (ORN) for LHIN 13 in Northeastern Ontario. She and her renal social worker colleagues are committed to improving the lives of those affected by kidney disease through education, counseling, advocacy and partnering with other community, provincial and national groups.
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Some people automatically think all catheters go into the penis or vagina (from where you urinate), but this is not so. One grandchild described grandma’s PD catheter as “a straw sticking out of her belly,” which is a pretty good description, although the tube is much longer and more flexible than a straw. And the Central Venous Catheter (or tube that goes directly into your bloodstream) is located usually in the upper body below the collarbone. Your nurse can show you the types of catheters and demonstrate where it will be placed. Most people find any type of catheter a little strange at first, but quickly get used to it. After some initial discomfort when the catheter goes in, most people don’t notice it anymore.
I like to travel. Which dialysis is better? You can still travel, but it will take some planning on your part. The easiest treatment to take on the road is peritoneal dialysis. If it is a short weekend getaway to the cottage for example, just pack your supplies and go. For longer getaways, patients usually contact the supply www.kidney.ca/ontario
LIVING WELL
company who will ship supplies for free to your vacation destination (usually up to twice per year). This includes most of North American and European locations, as well as some tropical locales. Cruise ships also can receive your supplies a day or two before departure. If you are travelling by air, your social worker or home dialysis nurse will provide some guidelines as to how best to transport your solution bags, as well as provide other ideas on travelling safely. It takes more planning on your part if you are on HD and want to go away for more than a weekend. Most HD programs ask that you contact the desired location and negotiate vacation dialysis times and dates. Many HD centres may not be able to accommodate your request, particularly if you are hoping to go at Christmas or during another official holiday. If you can be flexible with your schedule, you may have greater success. When accepted, your centre will send the necessary medical information to allow the receiving centre to review your needs and approve your visit if they can. Patients have travelled and dialyzed all over Canada, the US, Europe and at tropical islands. Some cruise ships provide hemodialysis on board. (Please note that if you are travelling out of country, you will have to pay a fee for treatments, often before you get there. The government will reimburse some of the cost, but perhaps not all.) Talk to your social worker for other ideas. The Kidney Foundation also provides a travel loan program to assist patients. Contact 1-800-387-4474, Ext. 4971 for more information or visit http:// www.kidney.ca/on/programs.
How can I afford dialysis at home? Ontario and most provinces are fortunate that the Ministry of Health and Long-Term Care pays for the majority of dialysis supplies that go into the home. Masks, clamps, dialysis solution and other supplies are paid for by the hospital program. Patients often have to purchase a heating pad, weigh scale and blood pressure cuff for PD. For home HD, a weigh scale and blood pressure cuff is also required. Some insurance companies will approve these as medical expenses. The Department of Veteran’s Affairs, Non-Insured Health Benefits (for First Nations patients), Ontario Disability Support Program and Ontario Works will often pay for these items as well. Please talk to your social worker if finances are a concern. www.kidney.ca/ontario
I live in a small place. How can I possibly store dialysis supplies? It is important that home supplies be stored in a warm, clean area. There can be a lot of supplies. Some people have an extra bedroom where they can store the boxes, etc. Others find that a double closet is enough room to store everything. Some people line the boxes up carefully against a wall in their bedroom or maybe an entry way. Although many deliveries happen only once a month, some companies will deliver twice a month if needed. Or, you might have your monthly deliveries stored at a family member’s house and routinely bring what you need to your house as required. Talk to your renal team about what you think the barrier is and perhaps a creative solution can be found. Home dialysis can be done in most homes.
What about diet and the type of dialysis? If you really want a more flexible diet with a greater selection of foods and beverages, PD might be a better option for you. Because you are constantly cleaning the poisons out of your system every single day, 24 hours a day, seven days a week, you may not need to restrict your food choices as much. Home HD, if done daily, may also allow a more flexible diet. With in-centre HD, your blood is being cleaned only 12 hours a week total (every other day), so it is important for you to monitor and control the volumes and types of food you eat and drink. If not, the poisons will build up to a point that will make you feel unwell and could even be dangerous. A registered dietitian is always a wonderful source of nutritional ideas for whatever type of dialysis you choose.
needles. Some patients ask for a freezing needle before the dialysis needles go in (like the freezing needles you get before you have a cavity in your tooth fixed). Other patients purchase a numbing ointment from the pharmacy to use before having needles put in. Many patients have learned how to do relaxation techniques to calm their anxiety and relax the body so it may not feel as painful. And believe it or not, some patients have very little pain and don’t need anything. Your social worker or psychologist may be able to help with needle desensitization therapy to help you overcome your fear of needles and make HD more relaxing.
Do I need to tell my current employer about my dialysis? Not necessarily. Insurance companies that pay your short-term disability payments will require medical documentation about the nature of your disease and treatment. It is recommended that at some point in time you discuss with your manager the limitations of what you can do based on your disease and treatment. There is a provision called “Duty to Accommodate” for employers which means that if an employee has or develops a condition that prevents them from doing regular job duties, then the employer must try and modify work conditions as much as they can to ensure that you can keep working safely. Some patients, depending on the type of work they do, must retire from work due to disability. Talk to the social worker about your employment.
I’m afraid of needles. How can I do hemodialysis? Many patients have fear of needles. And many patients have done well on HD despite their i n it ia l fea r. I f you have a graft or fistula for HD, the nurse will need to use Spring 2011 / Kidney Living /
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LIVING WELL
Do I need to tell my new employer about my dialysis? Not necessarily. If you are starting a new job and as long as you are honest about your ability to perform the duties of the job in a safe, effective manner, you do not need to advise them of your medical situation. Employers cannot ask about any disabilities, but they can ask if there is anything that would prevent you from doing the job. It may prove to be to your benefit to advise a new employer at some point in time that you are on dialysis and may on occasion need to attend to your medical needs. Once again, the social worker can be a great source of ideas.
How do I have sex with a dialysis catheter in? Because the catheter doesn’t go into the penis or vagina, PD patients can just roll up their catheter and secure it the way they were taught, and proceed with life as usual. Some women strategically place a silk scarf across their bellies to add some mystery. Many HD patients will just make sure the catheter is secure and doesn’t get caught on any clothing. Many people (not just patients) are a little self-conscious about their bodies anyway, and the sexy factor of a catheter can certainly impact one’s love life …if you let it.
Our partners usually love us no matter what “imperfections” or “love handles” or apparatus we have. The first time might be more unsettling, but remember that the most important organ for sex is the brain. Think of your catheter as your lifeline to health, your way of getting back to feeling healthy again. That is the most important thing to bring back to a loving intimate relationship. If you feel physically well, you’ll feel better about yourself. Don’t forget to be honest with your partner about your feelings. Look for the brochure on “Sexuality and Kidney Disease” available from The Kidney Foundation (http://www.kidney. ca/Document.Doc?id=314). Most programs have a social worker to talk with if you are still struggling with the idea of how you look or the sexy factor.
A great resource is The Kidney Foundation’s website with many online publications, including the manual, Living with Kidney Disease. And don’t forget The Kidney Foundation’s Peer Support Program, Kidney Connect. Sometimes the voice of another kidney patient who has already taken this path may help give reassurance that you are normal and you will be okay.
There are probably a lot of other questions you might have about dialysis. There are no silly or stupid questions when it comes to managing your dialysis and your health. Your renal health team (nephrologist, nurse, dietitian and social worker) is prepared to help you explore the answers to any questions you may have if it leads to a better understanding of what you need to do.
The Kidney Foundation of Canada thanks you for your support. The personal contact information that we have on file for you is used for the purpose of sending you this publication. From time to time we may use your contact information to keep you informed of other activities, events and/or fundraising opportunities in support of the Foundation. Should you, at any time, wish to be removed from any of these lists, kindly check below and mail this back to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1, or contact us via email at grose@kidney.on.ca. Please allow up to 30 business days to update our records. q Please take my name off the contact list for this newsletter. q I do not want my name to appear on The Kidney Foundation of Canada’s other contact lists. Indicate your name and address as it appears on the mailing label or include the mailing label with your request. _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ If you have any questions or need more information about how the Foundation respects your privacy, email us at privacy@kidney.ca, Attention: Chief Privacy Officer.
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LIVING WELL
CSA Approved New standard aims to improve safety for home-based dialysis patients
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n December, 2010 the Canadian Standards Association (CSA) released Canada’s first national standard to improve safety for home-based dialysis patients. According to a news release issued by the Canadian Standards Group, this new standard intends to improve the overall quality of home dialysis by making it convenient and reducing hospital visits. Entitled CSA Z364.5 Safe Installation and Operation of Hemodialysis and Peritoneal Dialysis in a Home Setting, the document was created in collaboration with health authorities, practitioners and patients. The guideline will help provide nephrology workers with a standard that allows them to better support people undergoing home hemodialysis or peritoneal dialysis. This step towards ensuring safety for patients who choose home-based dialysis will encourage best practices across Canada. The CSA standard will set requirements for home dialysis policies and procedures, plumbing and electrical, feed and dialysis water quality, emergency procedures, and client and caregiver training. It also highlights vital training for kidney patients including pre- and post-treatment procedures, equipment checks, emergency preparedness, and other relevant skills such as dealing with general complications of dialysis. It also takes into account the consideration of several variables that may influence learning and can include individuals’ skills and abilities, physical condition, motivation, readiness, values, past experience, age, and gender.
Source: http://www.newswire.ca/en/releases/archive/December2010/16/c5017. html?view=print. ď Ž
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WORKING TOGETHER
Founder of Italian Night Dinner Passes Away Agostino Monteduro was passionate about finding a cure for kidney disease.
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r. Monteduro, a driving force behind the establishment of the Ottawa-based Kidney Research Centre and founder of the profoundly-successful Italian Night fundraising dinner, passed away on Sunday, December 12, 2010 at the age of 81. Mr. Monteduro and a group of dedicated volunteers have raised more than $800,000 in the past 26 years in support of kidney research. Since 1998, the Italian Night Dinner has included in its annual program the recognition of a member of the Ottawa community who has made a significant contribution to kidney research. In 1999, the Italian Night Committee established The Agostino Monteduro Endowment Fund. The fund, which has more than $500,000 endowed, will perpetually support kidney research, patient services, organ donation awareness activities and scholarships and bursaries to people undertaking studies related to kidney disease. Mr. Monteduro was a kidney transplant recipient. In 1983, a construction accident resulted in injuries which caused a kidney malfunction and Mr. Monteduro was on dialysis for a year before receiving a transplant at the Ottawa Civic Hospital. Inspired by the challenges facing patients he visited during his recovery, Mr. Monteduro approached The Kidney Foundation’s Eastern Ontario Chapter to ask how he could help with the cause. He devoted his energy toward many Kidney Foundation fundraising initiatives, but became widely known for establishing the annual Italian Night Dinner and for collaborating with other influential community members to help establish the Ottawa-based Kidney Research Centre. Six years after receiving his first transplant, Mr. Monteduro’s kidney failed. Once again faced with the rigours of dialysis, he tenaciously continued his fundraising efforts, selling dinner and raffle tickets. He was soon on the short list for another transplant and was outfitted with a beeper commonly used to notify candidates when a suitable donor organ becomes available. During the 1990 Italian Night Dinner, Mr. Monteduro’s beeper rang and a second kidney transplant followed. Among his many accolades, Mr. Monteduro was awarded Knight of the Order of the Star of Solidarity by the Government of Italy through the Canadian Chancellery of Honours. He was recipient of two Kidney Foundation of Canada Volunteer of the Year Awards, the Air Canada Heart of Gold Award for outstanding contributions to the community, and the Canada Volunteer Award, Certificate of Merit, granted by the Canadian Minister of Health for his valuable voluntary service in improving the health and social wellbeing of Canadians.
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BUILDING A FOUNDATION
The Magic of Galabration 2011 An evening to Imagine, Inspire, Innovate Dr. Hladunewich
The Kidney Foundation of Canada invites you to share in the spirit of Galabration 2011 on Wednesday, April 27 at the Metro Toronto Convention Centre.
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he evening will explore the latest research developments, with an emphasis on kidney cancer and the impact of kidney disease on pregnancy, and the process of carrying a child to term. Guest speaker Dr. Michelle Hladunewich, Nephrologist and Head of the recently created Division of Obstetrical Medicine in the Department of Medicine at Sunnybrook Health Sciences Centre, is passionate about the renal physiology of normal and abnormal pregnancy. This has led to her development of specialty clinics in kidney disease and pregnancy. “I am a proud supporter of The Kidney Foundation of Canada. The Foundation advocates on behalf of my patients and funds my research, allowing me to make a difference in the lives of patients with kidney disease. The annual Gala is such a wonderful event and I am delighted to participate and share the stories of my special population of patients – young women affected with kidney disease,” said Dr. Hladunewich. It is our privilege to announce that Mr. Graham Farquharson, senior statesman of the mining industry and philanthropist for kidney cancer research, has accepted the role of Honorary Chair for Galabration 2011. Kidney cancer has affected Mr. Farquharson’s family and in turn has created his strong personal connection towards the cause. As our Honorary Chair, Mr. Farquharson looks forward to helping support our mandate of leveraging awareness through sharing the stories of those impacted by kidney disease.
Evening Details Cocktails and hors-d’oeuvres will be served between 6:00pm and 7:00pm, followed by dinner, live entertainment and both silent and live auctions. Join us for a magical evening, as we share stories and successes from our keynote speakers and raise funds to support kidney research and programs for individuals living with kidney disease.
Words of Commendation “Dr. Michelle saved my life, and on more than one occasion too! She was so kind and professional but mostly put me at ease with her knowledge and unwavering dedication to what she does. She is the reason why I was able to have two beautiful, healthy children. Simply put, I have a family because of her!” ~ Morgan Houston
For tickets, sponsorship opportunities and event details visit www.galabration.ca or call Elisa Hope at 1-800-387-4474 Ext.4252. www.kidney.ca/ontario
“Dr. Hladunewich stands out in her field as much more than an incredible nephrologist. She is someone who believes a better quality of life is possible for people with kidney disease, and is on a mission to make that better life happen. I am lucky to be her patient. Dr. Hladunewich has not just improved my health; her incredible dedication during my pregnancy literally changed my life. We have a beautiful healthy three-year-old boy – our little miracle – because of her efforts. I thank her with all my heart.” ~ Heidi Westfield
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FUNDRAISING
What a Wonderful World Uncle Arto’s legacy lives on. Team Arto at the Give the Gift of Life Walk by Adrina C. Bardekjian, Team Arto Captain
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ncle Arto Okutan was 19 when he was diagnosed with renal failure. He spent the next two years on dialysis. In 1975 my grandmother gave him one of her kidneys and was later recognized for her gift with a “Mother of the Year” award. For 35 years after his transplant he lived a happy life and was one of the longest living kidney transplant recipients in Canada. He married and had two terrific children; he loved everyone and touched the lives of hundreds of people. Every time I hear the song, “What a Wonderful World” by Louis Armstrong, I think of Uncle Arto. He was kind, selfless, generous and always made us laugh. He constantly challenged us to grow and learn in different ways. He was full of life and met every difficult situation with dignity. He showed me that it’s possible to overcome any challenge and to treat it like an opportunity. Arto went to Moris Cody Public School, Hodgson Junior High, Northern Secondary and moved on to study graphic arts at George Brown College. He also belonged to the ACYOA. In 1988, he opened the Merchants Flea Market. He was involved in the Armenian community coaching junior hockey, helping on various fundraising activities and also served on the Parish Council. He was active in sports; he loved hockey and baseball. He loved the Beatles, old movies and spending Christmas morning in pyjamas. He liked cars and had a reputation for changing them often. Details mattered to him—the idiosyncrasies that made life and every individual unique. When we were growing up, each year he took my sister and me to the CNE. It was our tradition. He called us the Three Musketeers. He’d win us stuffed animals shooting the pool table games. Despite his strained health, he remained an eternal optimist, appreciating everything. He spoke well of everyone. If you needed him, he made time for you—ready with a helping hand, an open ear and a solid shoulder. He was thankful for the care and consideration from his many doctors and nurses at Toronto General Hospital and the Sheppard Centre Dialysis Unit. Without them, we would not have had him for so long. Up until his last moments in February 2010, he repeated, “I am the luckiest man alive.” I’m grateful for the medical advancements and the people who made it possible for us to have Uncle Arto for as long as we did. His courage taught me that it’s not the end result, but the journey in life that matters. He will always be an inspiration for all the people he touched to become a better person. Arto was my godfather, my uncle, a husband, a father, a brother, a son, a partner, a friend. I want to celebrate and honour his life by thinking of him with fond memories, and practicing the life-lessons he taught us. It’s the way he deserves to be remembered. Last autumn during The Kidney Foundation of Canada’s annual Give the Gift of Life Walk, the 72 members of “Team Arto,” joined together to honour Arto’s memory. Our team of family and friends strived to spread his message of hope to others who brave the challenges he so valiantly endured. Collectively we raised over $20,000 in support of the Foundation and established an Endowment Fund in Uncle Arto’s memory. The endowment will provide a lasting legacy and positively affect the lives of thousands of individuals affected by kidney disease. www.kidney.ca/ontario
BUILDING A FOUNDATION
International Kidney Meeting Comes to Canada
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his April, The Kidney Foundation of Canada will host the 12th Annual Meeting of the International Federation of Kidney Foundations (IFKF) in Vancouver. The annual meeting brings together professionals from kidney health organizations around the world and gives them a chance to discuss rising issues, exchange expertise, and work collaboratively with a vision of reducing the burden of kidney disease. This year’s meeting will focus on the many diverse and significant roles played by kidney foundations the world over. Formed in 1998, the IFKF is an international organization that fosters worldwide collaboration along with the exchange of ideas through advocacy, educational programs and research. This membership-driven foundation aims to improve the health, wellbeing and quality of life of individuals with kidney disease. The meeting will be held from April 4-7, 2011. For more information about this event visit the IFKF’s conference website http://www.ifkfvancouver.com/. Immediately following to the IFKF meeting, Vancouver will also be host city to the World Congress of Nephrology from April 8-11, hosted by the International Society of Nephrology and the Canadian Society of Nephrology. Information about this event can be found at http://www. wcn2011.org/.
Donate by Text We now have a new, convenient way for you to help support The Kidney Foundation of Canada. With a simple text message, you can make a $10 donation to The Kidney Foundation. Simply text the word “KIDNEY” to 45678. Each $10 donation will be added to your next mobile phone bill.* You can donate up to $30 per month. 2 Simple Steps 1. Text “KIDNEY” to 45678 to donate $10. 2. Confirm your donation by replying YES. *A one-time donation of $10 will be added to your mobile phone bill or deducted from your prepaid balance. All charges are billed by and payable to your mobile service provider. Service is available on most carriers. Donations are collected for the benefit of The Kidney Foundation of Canada by the Mobile Giving Foundation and subject to the terms found at www. mobilegiving.ca. To unsubscribe, text STOP to 45678, for help text HELP to 45678.
www.kidney.ca/ontario
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EAT TO LIVE
Don’t Pass the Salt, Please Sodium reduction strategy for Canada
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esearch has established that high sodium intake is linked to elevated blood pressure, which in turn is the major cause of cardiovascular disease and a risk factor for stroke and kidney disease. While there is evidence to suggest that Canadians are aware of sodium as a health issue, very few understand what a healthy amount of sodium is: Adults should aim for 1,500 mg of sodium or less each day and should not exceed 2,300 mg per day, yet estimates indicate that Canadians consume, on average, 3,400 mg of sodium daily. In late 2007, the federal government formed the Canada Sodium Working Group with a mandate to develop and oversee the implementation of a population health strategy for reducing sodium intake among Canadians. As proud partners in the Sodium Reduction Research Workshop, which was organized by the Canadian Institute for Health Research (CIHR), The Kidney Foundation of Canada aims to encourage people to reduce their salt intake since a low-sodium diet is critical for renal diets. The combination of too much sodium and too much fluid can be life-threatening for kidney patients, whether or not they are on dialysis. Several specific recommendations in the Sodium Reduction Strategy are imperative to the health of kidney patients. We are eager to incorporate education and advocacy pieces related to salt in all aspects of our planning in 2011 and we look forward to sharing this with you in the months to come.
The Sodium Working Group’s overarching recommendations are: A. An interim sodium intake goal of a population average of 2,300 mg of sodium per day to be achieved by 2016. The ultimate goal of the Sodium Reduction Strategy is to lower sodium intakes to a population mean …where more than 95 percent of the population have a daily intake [of 1,500 mg or less]. B. Collaboration across all levels of government, health professional organizations, non-governmental organizations (NGOs), media, industry and academia to implement the specific recommendations in a coordinated, systematic and timely fashion. C. Federal, provincial and territorial governments provide adequate funding to support the successful implementation of the Sodium Reduction Strategy. D. A ll levels of government and stakeholders develop and integrate sodium reduction into their nutrition programs, guidelines and policies. E. The implementation process includes outlining the individual steps required for each recommendation, specifying timelines and monitoring the completion of each step. F. All Canadians take personal steps to reduce sodium consumption as part of an overall healthy diet.
Regarding current nutrition labels, the Sodium Working Group recommends: • The Food and Drug Regulations be amended to ensure that the serving sizes used in the Nutrition Facts table (NFT) are as uniform as possible to facilitate the comparison of sodium levels in similar foods, and that • The Food and Drug Regulations be amended to change the basis of the Daily Value (DV) for sodium in the Nutrition Facts table (NFT) from 2,400 mg to 1,500 mg to reflect the Adequate Intake (AI) level.
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EAT TO LIVE
Regarding posting sodium content at food establishments, the Sodium Working Group recommends: The Food and Drug Regulations and applicable provincial regulations be amended to require the on-site disclosure of nutrition information in a consistent and readily accessible manner for standardized menu items prepared and assembled on-site at restaurants and food service establishments, where feasible (e.g., in establishments with a high degree of standardization).
Regarding monitoring additives, the Sodium Working Group recommends: The federal government, along with the provincial and territorial governments, where necessary, review the food additive approval process and modernize the standards of identity for foods while maintaining microbial food safety.
Regarding social marketing, the Sodium Working Group recommends:
The Skinny on Salt The sodium reduction strategy is of particular interest to KFOC given that people following a renal diet must also monitor the potassium and phosphate content of foods and that sodium, if it is reduced in processed foods, is often replaced by additives that can be harmful for people living with kidney disease. In total, it is estimated that commercially processed foods account for 77 percent of sodium intake. High sodium foods that should be avoided include cured meats (e.g., ham, sausage, bacon, corned beef), many cheeses, “fast” foods, pickles, bouillon cubes, soy sauce, vegetable juices, canned vegetables (with salt), and salted snack food (e.g., crackers, potato chips and nuts).
The federal government lead the development and implementation of a social marketing campaign on sodium. This campaign should be aligned with efforts of the food industry to reformulate their products.
Regarding community-based activities, the Sodium Working Group recommends: Governmental and non-governmental funding bodies develop cohesive and coordinated funding mechanisms to enhance community-based activities that will support the Sodium Reduction Strategy.
Regarding education, the Sodium Working Group recommends: In the context of a broad education campaign on sodium, a strategy is developed to help consumers understand the current Nutrition Facts table (NFT). It should be understood that changes to the NFT will be made in the future and a comprehensive strategy will be needed to support the NFT.
For more information and the full report visit the Health Canada Sodium website at: http://www.hc-sc.gc.ca/fn-an/nutrition/sodium/index-eng.php.
The Kidney Foundation of Canada provides information about nutrition through a regular blog by June Martin, renal nutritionist. Read June’s blog at www.kidney.ca.
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ADVOCACY
Exercise Your Rights Have your say in the provincial election on October 6, 2011.
by Mary Floro-White
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he Ontario Provincial election provides an opportunity for The Kidney Foundation and its supporters to bring the issues affecting people living with kidney disease and their families to a broader audience. During the election campaign, it is vital to make the current and prospective new Members of Provincial Parliament (MPPs) aware of our issues as this is a time that all candidates are eager to talk to voters.
How You Can Get Involved Make sure to speak up for people living with kidney disease by: • Writing letters to local candidates • Attending and asking questions at all-candidates meetings • Visiting candidates in their offices and asking them where they stand on the issues • Being prepared to ask kidney-related questions of candidates who visit your home or workplace • Voting on election day Check out the Kidney Foundation Election Centre at www.kidney.ca/on/election for updates on election activities. Templates will soon be available online to help you with the abovementioned activities or email election@kidney.on.ca. Information about your Electoral District can be sourced through www.electionsontario.on.ca Our key messages clearly state that support is needed for people living with CKD through the following: Financial Support Mechanisms: The establishment of a reimbursement or rebate program to support patients who: (a) opt for home treatment options to reduce the financial burden they face with increased water and hydro bills; (b) opt for in-centre dialysis treatment to reduce the financial burden they face with transportation costs to and from treatment for dialysis as well as transplant work up and surgery. Prevention and Early Detection: Early detection of chronic kidney disease (CKD) can delay progression. The best solution, therefore, is to screen and identify risk factors for CKD before it develops, particularly in “at risk populations” which include people with: diabetes, high blood pressure, and a family history of CKD.
Photo credit: BigStockPhoto.com/1385306
Recommendations: Patients in the “at risk” populations should ask their family doctor to check their kidney function—“request the tests;” medical practitioners should be encouraged through incentive programs to check renal functioning; incentive programs currently exist for screening of breast and colorectal cancers; collaboration with Ontario Association of Medical Laboratories. Ontario Renal Network (ORN): The Kidney Foundation strongly supports the structure that coordinates and integrates renal care in the province. This present system works effectively in partnership with The Kidney Foundation at both the local level, with our representatives participating on the 14 LHIN-aligned ORN Regional Renal Program Steering Committees (RRPSCs), and at the provincial level.
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BUILDING A FOUNDATION
Kingston Chapter Inspiring Community for 30 Years
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his year marks a milestone for the Kingston Chapter as it celebrates its 30th anniversary. To mark this special occasion, the Chapter will pay tribute to three outstanding people who have made significant contributions in the field of nephrology and patient services. On Wednesday, June 1, 2011 these honorees will be lauded at the 2011 Inspirations Dinner: Derek Shaw: Derek, along with his wife Marg, started the Kingston Chapter of The Kidney Foundation in March 1981 with Derek as President and Marg as Secretary. Throughout the past 30 years, Derek has held many volunteer positions from President to an active participant in March Drive. Derek has participated on numerous fundraising committees, frequently as Chair. Currently, he is Past President of the Kingston Chapter.
Derek Shaw
Dr. Ted Toffelmire: Dr. Toffelmire has taught and practiced nephrology in Kingston since 1988 and has published, presented original work, and chaired groups related to anemia, drugs in kidney disease, renal education, and delivery of health care to persons affected by kidney disease. Continuously during this period, he has worked closely with The Kidney Foundation of Canada locally, provincially and nationally and has received numerous awards, including the 2003 Alfred E. Coll Award for distinguished leadership and service and the 2007 Harold W. Ashenmil Award for distinguished service and noteworthy contributions. Margo McMurray: Margo graduated from Royal Victoria Hospital in 1964. She began working in the Kingston General Hospital Renal Unit in 1969, then in 1985 spent two years at St. Michael’s hemodialysis unit in Toronto before returning to KGH in 1987. Margo has tirelessly supported the annual March Drive, both as a canvasser and a captain, since her return to Kingston. She retired in 2008 after almost 40 years in hemodialysis nursing.
Dr. Ted Toffelmire
The Inspirations Dinner will be held at the Cataraqui Golf and Country Club. Tickets are $75 person or $600 for a table of eight. Tickets can be purchased by calling 613-542-2121 or by email at alabrash@kidney. on.ca. For details, visit http://www.kidney.ca/ontarioevents. ď Ž
Margo McMurray www.kidney.ca/ontario
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WORKING TOGETHER
Rural and Northern Health Report: Stage 1
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he Rural and Northern Care Panel was established by Premier Dalton McGuinty in July 2009 with the mandate of increasing access to care in rural and northern communities. A three-staged approach to developing the Province’s Rural Northern Health Care Framework/Plan was outlined in the recently-released Stage 1 Report. Here are the highlights:
Stage 1
Quick Facts • More than 2.5 million Ontarians live in rural areas of the province, of which approximately 346,000 of these people live in northern Ontario. • The government has created more than 80 new Family Health Teams in rural Ontario and Northern Ontario. • When the Northern Ontario School of Medicine opened in September 2005, it became the first new medical school in Canada in over 30 years. Source: http://www.health.gov.on.ca/en/ public/programs/ruralnorthern/framework.aspx
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The release of the Rural and Northern Health Care Framework/Plan Stage 1 Report outlines the mission, guiding principles, planning standards, strategies and guidelines for the Ministry of Health and Long-Term Care (MOHLTC) and the Local Health Integrated Networks (LHINs). There are a total of 12 recommendations to the Ministry’s consideration in the development of a Provincial Framework/Plan. The full report is available at: http://www.health.gov.on.ca/en/public/programs/ruralnorthern/framework.aspx
Stage 2 Broader Community Consultations – A series of public consultations or “public regional round table discussions” with the LHINs and local communities, as well as “online consultations,” were to have started in January, 2011.
Stage 3 - Development of a Provincial Framework/Plan According to the Ministry of Health and Long-Term Care, the Rural and Northern Health Care Panel’s report contains 12 recommendations for the ministry to consider in developing a rural and northern health care framework. The 14-member panel represents a broad range of stakeholders and health care professionals who have experience working in rural and northern areas of Ontario. The panel members extensively reviewed documents and studies and interviewed key stakeholders in forming the recommendations. As part of Stage 2 for the development of a rural and northern health care framework, the government wants to hear from the public. It will be engaging in a series of public regional round table discussions and online consultations. Specific details on how you can participate are available on the website. www.kidney.ca/ontario
COMMUNITY HIGHLIGHTS
Community Highlights Lion’s Camp Dorset Wins $100,000 in Funding from PEPSI Refresh Everything In the fall of 2010 PEPSI launched a social movement, the PEPSI Refresh Everything Program. This online phenomenon is slated to award more than $1 million in grants and will help fund innovative ideas that will positively impact communities across Canada. Lions’ Camp Dorset heard of the exciting opportunity, applied for funding and are the proud recipients of one of the $100 000 grants. “This is great, as it will pay for approximately 10 of the new machines that will be delivered in April,” says Barry Jaynes, President of Lions Camp Dorset. “Everybody’s calling and are very excited.” Lion’s Camp Dorset, operated by the Lions and Lioness Clubs of Ontario, is nestled in the forests of Ontario’s cottage country and caters to dialysis patients and their families. After the 2011 camping season, Camp Dorset must retire and replace 20 dialysis machines to continue to give campers a special experience. Although getting the PEPSI Refresh Campaign funding is a huge help, it is important to note that a total of 20 new machines are needed to ensure that the camp continues to serve the dialysis patients and their families. To date, Lions Clubs from all over have contributed to this great cause, including the Oshawa West Lions Club, the Bradford Lions Club and the Lindsay Lions Club. The Kidney Foundation of Canada supported the online voting initiative through website stories, postings on its Facebook and Twitter accounts encouraging voting. In addition, the Foundation provides funding and support to assist patients each year in accessing Lion’s Camp Dorset. If you would like to learn more about Camp Dorset and ways you can help, please visit the Programs & Support section of our website at www.kidney.ca/ontario or visit www.lionscampdoreset.on.ca. www.kidney.ca/ontario
“Let Love Fill Our Lives” p On December 17, 2010, Ike Zhang, a 16-year-old student from Victoria Park Collegiate Institute held a holiday charity concert to raise money for The Kidney Foundation of Canada in honour of his mother, Linni Xu, and others affected by kidney disease. As the leader and head organizer of “Let Love Fill Our Lives,” Ike dedicated months of his time and energy to finding performers, securing a venue, searching and confirming sponsorships, reaching out to media, selling tickets and coordinating all of the event logistics. Ike managed to attract many diverse audience members: doctors, politicians, community representatives, nurses, patients, family and friends. He succeeded in creating a multicultural event, allowing him to promote kidney health and the importance of reducing the burden of kidney disease to an audience of 500 people. The attendees were captivated by the concert, watching and listening to the incredible members of the Toronto Chinese Orchestra and talented individual musicians and performers. This event was an unbelievable success, raising $7,000 for the Foundation. Congratulations, Ike, on an exceptional event—one that truly inspired countless people, increasing public awareness and commitment to advancing kidney health and organ donation.
Accepting the proceeds of Ike’s concert are (Left) Wendy Kudeba, Ontario Branch Director of Marketing & Communications, and Elisa Hope, Fund Development Coordinator for the Central Ontario Chapter.
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COMMUNITY HIGHLIGHTS
New Advisory Group in Western Ontario
Striking Out Kidney Disease p Thank you to all of the event participants and supporters who allowed us to bowl a strike against kidney disease at Bowl ’10 in Toronto. The event was a true success, raising more than $42,000 to support individuals affected by kidney disease. A special thank you to our top three fundraising teams: Holy Bowlers Team 1 - $9,382; Holy Bowlers Team 2 $7,103 and Lucky Strikes -$4, 258.
A new Fund Development Advisory Group has been established for the Western Ontario Chapter, which coordinates activities and events in Kitchener, Waterloo, Guelph and area. Their key priority will be the annual Give the Gift of Life Walks, held each fall, in addition to taking advantage of opportunities to raise awareness about the Foundation. The group includes Joy Beavan, MHSM, BHlthSc (Nurs), CNephc, RN, Associate Vice President, Medicine Services, Grand River Hospital; June Martin, RD , Clinical Dietitian, Grand River Hospital; Peter Varga, Program Director, Renal Dialysis, Grand River Hospital; Dr. Louise Vitou, Nephrologist; and Mark Winter, transplant recipient. For more information, contact The Kidney Foundation of Canada, Western Ontario Chapter, at 1-800-667-3597: Kim Pritchard, Manager of Fund Development, Ext. 23, kpritchard@ kidney.on.ca; or Bick Trinh, Fund Development Officer, Ext. 24, btrihn@kidney.on.ca.
Pictured is Event Chairman Harvey Lipman with wife Sharon (front row second and third from left) and their teams – The Holy Bowlers 1 and 2.
Map photo credit: BigStockPhoto.com/4556521
Share Your Excitement for Our Fall Walk As excitement builds for our annual Give the Gift of Life Walks taking place this fall, we are travelling far and wide in hopes of spreading kidney health and organ donation awareness. Pictured here is Ozzie Porcel, wearing his walk T-shirt while advocating for the Foundation atop Machu Picchu, Peru. If you’ve taken your walk T-shirt on vacation with you, or plan on doing so in the months leading up to our next event, consider sharing your photo with us. We will post photographs on our website so we can track the number of places The Kidney Foundation visits in the coming months. Please send your photo by email to communications@kidney.on.ca. We will reply by sending you a simple form for you to complete which grants us permission to publish your photo online. Thanks for your global support of The Kidney Foundation of Canada.
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Helping Hands p Helping Hands in Action assisted the Northern Superior Chapter of The Kidney Foundation. In the fall, Union Gas volunteers assembled and installed storage cabinets at The Kidney Foundation’s Thunder Bay office to improve the use of space and increase storage.
At right, Chapter Coordinator Lisa Galon thanks the crew for their efforts.
www.kidney.ca/ontario
COMMUNITY HIGHLIGHTS
Inspirations Lives Up to its Name t On November 24, 150 people gathered at the Canadian Museum of Civilization to honour three outstanding local individuals. Event Chair Dr. Ann Bugeja started the evening with a toast to the honorees, all of whom have made and continue to make significant contributions in the field of organ and tissue donation. The celebratory evening also included a silent auction. Guests and sponsors, including LEO Pharma, Amgen, Astellas, Cohen & Cohen and The Ottawa Citizen, helped to make the evening a success by raising $25,000. A special thanks also goes to Dr. Kevin Burns, Dr. Peter Magner, Dr. Todd Fairhead, Dr. Greg Knoll, Dr. Frank Markel, emcee Bob Derro, Majic 100 and CRFA radio stations for their assistance in making the evening a very special event.
L to R: The Kidney Foundation of Canada, Ontario Branch Executive Director Jim O’Brien; honorees Dr. John Dossetor, Diane Dumont, and Rabbi Dr. Reuven Bulka, Event Chair Dr. Ann Bugeja and Kidney Foundation of Canada National President Kathryn Richardson
“Elvis” Sighted at Pub Night
Dr. Steele Certainly has Left an Impression p On December 1, 2010 over 300 people gathered at Liuna Station in Hamilton to honour the work of Pediatric Nephrologist Dr. Brian Steele. Touching tributes and stories that illustrated Dr. Steele’s stellar medical care were shared by his colleagues and the families of children he has treated. The event co-chaired by Dr. Euan Carlisle and Dr. Alistair Ingram featured a live auction and special video tribute.
p There was an Elvis sighting at the Annual Pub Night in Memory of David Taylor, held at Liam McGuire’s Pub in Ottawa on November 9, 2010. Impersonator Dan “Elvis” Burgess had those in attendance singing along to their favourite Elvis songs while enjoying a wonderful buffet and silent auction. Congratulations to Judy Taylor, President of the Board of the Eastern Ontario Chapter, and her family for organizing another successful event as the 2010 Annual Pub Night in Memory of David Taylor raised close to $8,000. The money raised for the David Taylor Memorial Bursary Fund provides financial aid for kidney patients and transplant recipients who are in pursuit of a post-secondary education.
Pictured from left are Kim (Taylor) Boyko, Ron Taylor and Judy Taylor
Pictured: Hamilton Chapter President, Janet Tranter and honoree Dr. Brian Steele. www.kidney.ca/ontario
Spring 2011 / Kidney Living /
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COMMUNITY HIGHLIGHTS
National Volunteer Week April 10-16, 2011
“
Not what we give, But what we share, For the gift without the giver Is bare. ~ James Russell Lowell
� Logo courtesy UN Volunteers
Volunteer Canada has set the theme for this special week as Volunteers: Passion. Action. Impact. Canada has an estimated 12.5 million volunteers who give their time, effort and skills to organizations. This year also marks the 10th anniversary of the United Nationsmandated International Day of Volunteers, which has now grown to make 2011 the International Year of Volunteers. To all our generous volunteers, thank you for all that you do. In appreciation, your friends and family at The Kidney Foundation of Canada
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/ Kidney Living / Spring 2011
More information about volunteerism in Canada, and the International Year of Volunteers can be found at http://www. worldvolunteerweb.org www.kidney.ca/ontario
COMMUNITY HIGHLIGHTS
For more details about these events and future happenings in your community, call The Kidney Foundation of Canada office nearest to you (see p. 2), or visit www.kidney.ca/ontario.
April 2
Living with Kidney Disease Patient and Family Symposium, Windsor 10-16 National Volunteer Appreciation Week 12 Kidney Connect Support Group Meeting, Thunder Bay 13 Multi-Faith Outreach Initiative, Windsor 17-24 National Organ & Tissue Donation Awareness Week 20 Kidney Connect Support Group Meeting, Kitchener 20 Lakeridge Health Patient & Peer Support Coffee Club, Oshawa 27 Galabration, Toronto
May
11 Kidney Connect Support Group Meeting, Thunder Bay 11 Pasta and Pizza Fest, Windsor 13-15 The Kidney Foundation of Canada, Ontario Branch Annual General Meeting and Volunteer Celebration, Windsor
17 Kidney Connect Support Group Meeting, Kitchener 18 Lakeridge Health Patient & Peer Support Coffee Club, Oshawa 24 100 Holes of Golf, London
June 1
10 14 15 15 18
Inspirations: People Making a Difference, Kingston Christine LaBrasceur Memorial Golf Classic, Sarnia-Lambton Kidney Connect Support Group Meeting, Thunder Bay Kidney Connect Support Group Meeting, Kitchener Lakeridge Health Patient & Peer Support Coffee Club, Oshawa Biz X Beach Jam Volleyball Tournament, Windsor
Join our growing Facebook Community In just one year, our Facebook community has grown from 300 Fans to nearly 4,000 today. Join us on Facebook today and be part of this growing community. Together we can make a real dierence in the lives of those living with kidney disease.
July
12 Kazman Kidney Classic, Oakville 20 3rd Annual Kidney Golf Classic, Vineland 25 Hub International Golf Classic, Windsor
facebook.com/kidneyfoundation
You are the key to our success. Find out how you can volunteer or donate.
www.kidney.ca/ontario  Discover why some of the richest people in the world are not millionaires, they are volunteers. www.kidney.ca/ontario
Spring 2011 / Kidney Living /
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2011 Membership Application and Renewal Form Mail your completed form to your local Kidney Foundation office. See p. 2 for a complete office listing.
Count me in! I want to support the work of The Kidney Foundation of Canada. Please print clearly
Name _______________________________________________________________________________________________ Address ______________________________________________________________________________________________ City ____________________________________________ Prov _____________ Postal Code ____________________________ Phone _______________________________________ Email __________________________________________________ $10 Voting Membership + $___________ Donation = $___________ total. 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 ____________________________________________________________________________________________
Please complete the following information as we are very interested in developing a profile of our membership. The information will be held in confidence. q I have kidney disease q I am on dialysis q I have a kidney transplant q I do not have kidney disease q I am related to someone who has kidney disease q I am a healthcare professional q I am interested in the work of the Foundation I am q 17 or under q 18 to 29 q 30 to 44 q 45 to 59 q 60 to 75 q 76+
www.kidney.ca/ontario
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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