Kidney Living - Summer 2011 English by The Kidney Foundation

What’s in this issue – Summer 2011

3 4 5 8 10 11 13 15 16 17

Going the Distance

18 19 20

Imagine, Inspire, Innovate

Brittney’s Story

So Many Heroes

Book Review: Sorrow’s Reward Give the Gift of Life Walk Northern Exposure Home Dialysis Dining Out A job well done Volunteers Ontario Volunteers Recognized at the National AGM Knowledge is Power Community Highlights

To Tell, or Not To Tell . . .

Cover photo: Mike celebrates the

completion of the marathon in St. James Park (with Buckingham Palace in the background) with his daughters (LR) Sarah, Charlotte and Samantha. See

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

story on p. 3. Photo credit: Jill Burgin

©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.

www.kidney.ca/ontario 2

/ Kidney Living / Summer 2011

The Kidney Foundation of Canada, Ontario Branch 2011-2012 Board of Directors Executive Harvey Thomson, President Terry Young, Vice President Peter Davis, Past President Debbie Lanktree, Treasurer Directors at Large Hélène Beaulieu Dr. Ann Bugeja Craig Kerr Janet Morgan Ken Mylrea Doug Parsons Brian Porter Greg Robbins Marlene Smith Mary Smith 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. 4977 hchow@kidney.on.ca 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

PERSONAL STORY

Going the Distance On the other side of the pond, one Kidney Foundation supporter found a way to support a cause no matter the distance. by Trish Reynolds

ots of people are interested in running marathons, most with the goal of simply finishing what they started or perhaps even besting their previous record. Rarely is the goal to raise in excess of $20,000 for one of their favourite charities. But that is exactly what Mike Flood did. On Sunday, April, 17, 2011, Mike gathered alongside 45,000 other runners, in Greenwich Park, Great Britain for the Virgin London Marathon. Mike’s goal was two fold; first, run the 26.2 mile marathon and in doing so, raise $20,000 for kidney research. Thankfully, we’re happy to report, both goals were accomplished. “I chose The Kidney Foundation of Canada as a beneficiary of my marathon run, to ensure those affected by kidney disease continue to receive the best possible support, resources and education in their time of need,” said Mike. Mike’s father, Brian Flood and aunt, Pat Flood, found out they had polycystic kidney disease (PKD) when they were both in their late 30s. Both were on dialysis for most of the 1990s and eventually they both received kidney transplants which of course dramatically changed their lives. During the course of their diagnosis and treatment, the family sought support from www.kidney.ca/ontario

p Jill, Charlotte, Mike, Sam, Sarah, Pat,

(Mike’s mom) Brian (Mike’s dad)

The Kidney Foundation of Canada and consequently became actively involved in advocating for kidney health. With hereditary PKD on his father’s side, Mike too has faced a diagnosis of PKD, along with two of his three daughters: Samantha and Sarah. Kidney disease is certainly a part of the Floods’ family life, now impacting a fourth generation, but he is determined to make a difference and assist the Foundation in improving the lives of all people affected by kidney disease. “Over the long term, I believe support for the Foundation’s investment in vital research is opening the door to innovative treatments and a healthier future for people living with kidney disease,” said Mike. “One only hopes that investments today will change the future course of kidney disease and its treatment not only for me, but more importantly for my daughters as we manage the effects of PKD together,” added Mike. Today, Mike is living a very happy and healthy life with his family in London, England where he heads the office for

Northleaf Capital Partners, a Canadian asset management firm. His strong kidney connection provided him with the strength to complete the challenging marathon; running through Greenwich, crossing the Thames at Tower Bridge, past the Tower of London, Big Ben and Buckingham Palace, in 20º Celsius weather. In the end, Mike raised an incredible $25,318 (£16,155) in total for the two beneficiary charities: The Kidney Foundation of Canada and Kidney Research UK. “It just goes to show you can live anywhere and still support The Kidney Foundation of Canada, said Elisa Hope, Fund Development Coordinator. “We would like to thank Mike for his outstanding dedication and contribution of over $21,000 to The Foundation,” added Elisa.

For information about organizing a third party event for the Foundation, please contact Elisa Hope at 1-800-387-4474, Ext. 4949. 

Summer 2011 / Kidney Living /

PERSONAL STORY

Stories of Hope Kidney Health Month provided a timely opportunity to educate Canadians about kidney disease, its modifiable risk factors, and the importance of financial support for programs and services to help improve the quality of life for current and future patients. March also proved the right time to encourage the sharing of experiences unique to the kidney community through the Kidney Stories of Hope campaign. Our judges were moved by the sincere and touching stories so many of you provided. Thank you all for your efforts. Your community engagement allows The Kidney Foundation of Canada to help improve the lives of all Canadians living with kidney disease.

Brittney, Warren, Marilyn and Mikayla

Brittney’s Story 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!

/ Kidney Living / Summer 2011

y dad has had kidney failure for as long as I can remember. He had his first kidney transplant when I was three years old, and that kidney was going strong for nine years. Four years ago, his transplanted kidney began to fail, and he is now back on the waiting list for another kidney. Also, he is currently part of a nocturnal home hemo dialysis study, which continues to be an excellent experience as he has hardly any food limitations and can still work at his full time manufacturing job. It is hard seeing someone you love being sick, but with The Kidney Foundation of Canada getting the word of organ donor awareness out, more people are donating money, signing their donor cards, and some have now taken an interest in studying to become researchers to help further medical advances. Thanks to the technology already in place, my own family can act like any other family, even though my dad does dialysis treatments five nights a week. Some people may think having a chronic illness like the one my dad has would be horrible, but we do not look at it that way. We take every day as a gift and are thankful that he is still here with us after all these years. If it were not for dialysis machines, I may have never known my dad, so I am incredibly appreciative as I love him so much. The Kidney Foundation of Canada has already brought organ donor awareness to so many people’s attention, I can only imagine the impact they will have in the years ahead. This influence means hope for families like mine who are waiting for a solution to this disease, and I happily support their efforts. ~ Brittney Krueger 

Visit www.kidney.ca/storiesofhope to read the 2011 stories selected from five different regions – BC, the Prairies, Ontario, Quebec and Atlantic Canada. Each regional submission awardee received a $500 cash prize from The Kidney Foundation of Canada, thanks to an unrestricted grant from Shire Canada. www.kidney.ca/ontario

AWARENESS

Book Review

Sorrow’s Reward Not your average piece of fiction by Stacey Scott

ritten against the dramatic backdrop of a dialysis unit, this series of vignettes encapsulates the stories of patients, families, nurses, doctors and healthcare workers as they reflect upon their experience with kidney failure. “When I was a new medical graduate I read a book entitled Spoon River Anthology. It was written in 1915 by Edgar Lee Masters in series of vignettes,” recalls Dr. Robert Bear, a seasoned nephrologist who practiced for over 35 years. “Ever since I read that book as a young man I thought of how wonderful it would be to write a series of vignettes.” Bear, who often wondered why there were not more physician writers since the practice of medicine is so thought-provoking, drew inspiration from many years working as a nephrologist along with his current work as a consultant. “I was influenced by the clinical experience in each hospital and how it acts as a window into our healthcare system,” says Bear. “A dialysis unit is an almost perfect microcosm of society.” The title came from the famous Mary Eddy Baker quote, “Sorrow has its reward. It never leaves us where it found us.” Bear feels that it states perfectly what needs to be said about kidney failure; sorrow comes to everybody and in one way or another they will never be the same. Bear has broad goals for Sorrow’s Reward. He wants those suffering from kidney failure to be aware of the importance of patient accountability and ultimately taking control of their own care. He wants those heading management positions in the healthcare system to think about the system at large and make it stronger. And he wants the general population to realize that judgment should never be passed on the lives of others. “I am really trying to engage the reader and spark discussion within the healthcare system,” says Bear. “I want to show and not tell. I hope this book leads to better care for these patients.” Dr. Robert Bear practiced as a nephrologist for over 35 years. He is a former Professor of Medicine at the University of Toronto and the University of Alberta. He has also held senior management positions in several healthcare organizations, and most recently, has worked broadly as a healthcare consultant. Although Dr. Bear has extensive work published in the medical field, Sorrow’s Reward is his first work of fiction.

Sorrow’s Reward can be purchased online at www. sorrowsreward.com or may be ordered through local bookstores. 

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.

Dr. Robert Bear www.kidney.ca/ontario

Summer 2011 / Kidney Living /

FUNDRAISING COVER STORY

p Lee gets ready for Kidney March 2011

/ Kidney Living / Summer 2011

www.kidney.ca/ontario

FUNDRAISING

So Many Heroes A movement to raise awareness of kidney disease brings out the best in its participants by Lee Ferreira

aving had the privilege of working in the area of renal disease and transplantation over the last decade, I am committed to be part of a movement to raise awareness of kidney disease, its prevention and organ donation. In 2009 I raised $1,500 for The Kidney Foundation by running in the Toronto half marathon. Two years later I am excited to be part of the second annual Kidney March, an extraordinary event taking place in Alberta in support of The Kidney Foundation of Canada, where I—along with many others—will walk 100 kilometres over three days; a feat that pales in comparison to anyone receiving the shock of a diagnosis of kidney failure. If you follow me on Facebook, you will see that I often post reminders to everyone of my upcoming adventure. I recently posted a video that you can also find on our Kidney March website (www.kidneymarch.ca). For me the video spoke volumes. It spoke of the many heroes that I have met over my 10 years of involvement with kidney disease and transplantation and to the many heroes I will walk with in September. I often ask myself, “How did I get here?” and I don’t mean being born, but rather right here, in the place I find that I am compelled to be—a place where I feel pulled and pushed to want to have some small impact, to be part of something bigger than I will ever be and to believe that in some small way I can perhaps make a difference. Why kidney disease? Why organ and tissue donation? Why am I not just content to go about my life without all the “extras?” I can’t answer any of this, except to say that I have been drawn in and drawn to this cause in a way I cannot even articulate. I could describe it as a feeling of need. Or maybe my desire to do something is based on my belief that this disease is so misunderstood, so misrepresented and certainly not part of our greater social consciousness. As a society we really do not appreciate what our kidneys do; the multitude of functions they perform and how their decline in performance has a detrimental impact on so many other bodily functions and other important organs, the heart being number one. Our kidneys are relatively small but we cannot I often ask myself, take for granted the major role they play in a very efficient and silent manner. Re“How did I get here?” ally, if you want to talk about heroes, our kidneys are definitely two of them! Everyone who has walked beside me down this path has played a critical role. Some have come and stayed and others have come and gone, but each has left their mark. They are all heroes in my book. I think of all the incredible people, the stories of resilience and the ability of so many individuals affected by this disease to continue on their path forward. They continue in spite of every obstacle and challenge put in front of them. They continue in spite of the physical and mental toll this disease can take. They simply continue. When I think of some of the many heroes I have met over the years, Shad Ireland is one. We met in 2003 through a partnership at work. Shad’s motto is, “No Limitations, Only Inspiration.” Shad is the first-ever dialysis patient to compete in and complete an ironman triathlon. Shad is just one of many heroes. How many more heroes like Shad do we know? Just go and read the stories that are posted by some of the walkers that will participate in this year’s Kidney March. They will inspire you, they will touch you and they will humble you. I am not a hero; but on September 9–11 I will walk 100 kilometres over three days with many heroic people. Together, we will bring this cause into our social consciousness; where it needs to be if we are going to support the two million Canadians affected by kidney disease and those who will be diagnosed in the years to come. We will not fail. 

www.kidney.ca/ontario

p Lee Ferreira, Central Ontario Chapter

Board Member, with her Support Crew: children Joshua, Mikayla and Nicholas

Editor’s note: Lee originally set her goal at $5,000, and when she exceeded it in just days, she bumped it up a little more... As of writing this editorial, she has raised more than $10,000. Follow her blog on http:// leewalks100.blogspot.com/. Six people from Ontario are heading to Calgary to participate in this event, and we understand other provinces are looking at opportunities to run similar events in the future. Stay tuned for details. Summer 2011 / Kidney Living /

FUNDRAISING

Give the Gift of Life Walk Sometimes a walk becomes a lifestyle. by Trish Reynolds

/ Kidney Living / Summer 2011

ixteen-year-olds dream about getting their license, hanging out with friends and going shopping. Rarely is health and chronic disease ever a thought, but it quickly became a reality for Gale Pimentel, 20 years ago. “While on vacation in Labrador City, Newfoundland & Labrador, visiting my older sister Paulette, I began noticing increased swelling in my ankles, but by morning the swelling seemed to disappear. After a couple of days of this swelling, I told my mom and sister and they quickly took me to emergency,” said Gale. After some preliminary blood tests Gale was sent home, and later called back to the hospital the following morning where she and her family were told that her kidneys were not functioning. “Before I knew it, I was being airlifted to a larger hospital in St. John’s, Newfoundland, where I was told that my kidneys were only functioning at five percent. Needless to say, I was shocked when I first heard the words kidney disease.” Two months later, Gale was heading home to Gaultois, Newfoundland, well trained on peritoneal dialysis. “My mom was an incredible support throughout this entire time; I remember feeling that we had to be so very careful not to get an infection.” It wasn’t long before Gale’s mother and siblings—Paulette, Brenda, Rudy and Lloyd began the process for testing to see if one of them would be a suitable kidney donor. “I was ecstatic when I found out that the transplant was a go and that my sister Paulette was a match! I cried and cried tears of joy… but I was also quite scared. I knew it would be a big surgery and a surgery of that size would mean we would have to travel out of province to Halifax, Nova Scotia for care.” www.kidney.ca/ontario

FUNDRAISING

Having a transplant truly changed Gale’s life and provided much hope for the future. “I believe having kidney disease and my kidney transplant made me become a better person, taking a different outlook at life. I continually try to be the best person I can be.” A f ter much encouragement from Gale’s husband Tim, and their family and friends, Gale participated in the World and Canadian Transplant games to prove the success of transplantation, to show the public what a difference it can make to someone’s life after receiving a life-saving successful transplanted organ. “I also wanted to prove to myself that I can do anything I put my mind to,” added Gale. “I wanted to meet people from around the world who had received the gift of life, to make new friends, to share stories, to receive information, and most of all to have fun! It was not about winning. I already consider myself as winning gold when I received my kidney!” The Pimentel family became involved with The Kidney Foundation a number of years ago, first by making a donation in lieu of favours for their wedding and then as participants in the annual walk. “Although the Give the Gift of Life Walk raises awareness and funds for The Kidney Foundation of Canada, for me, it is also a celebration of the gift I have received. I walk to show my gratitude to my sister Paulette for her selfless gift and to show appreciation to all donor families for giving someone else a second chance.” The Pimentel family walks together with their four-year-old son, Owen, because it allows him to see how many people care about those living with kidney disease. “It’s a

Walk With Us Join a Give the Gift of Life Walk in your community and be part of something bigger. The walk takes place in communities all over Ontario. The Foundation looks forward to its most successful year ever and has set a goal of raising more than $500,000 across the province. Online registration and fundraising is now open for the 2011 Give the Gift of Life Walk. Register today at www.kidney.ca/ontariowalk and demonstrate your commitment to raising awareness about kidney health and organ donation.

www.kidney.ca/ontario

Connect with someone who understands valuable message for Owen, and for all of us, that we’re not alone in our experience. Joining us this year for the first time will be our son Brent, 2, allowing us to create even more family memories. Owen is the poster boy for the posters (see p. 23) and pledge forms this year,” added Gale. This year marks the 20th anniversary of Gale’s transplant, so it is certainly a time to celebrate! “Our family recently gathered to celebrate my nephew’s wedding on a wonderful cruise this spring, and we took time to celebrate and promote organ and tissue donation to our fellow cruisers by wearing green ribbons to the wedding ceremony.” You’ll find Tim and Gale strolling these days in Wheatley, Ontario with sons Owen and Brent, getting ready for this year’s walk in Windsor/Essex County. Not only a participant, Gale is also part of the walk organizing committee for her local walk aimed at recruiting new walkers and spreading the word about kidney health and organ donation. She also actively participates on a committee at Leamington Memorial Hospital working to establish a satellite dialysis unit in their community, and she is pleased to report that construction has begun. 

1 866 390 PEER (7337)

If you or someone close to you has kidney disease, sometimes it helps to talk about it. The KIDNEY CONNECT Peer Support Program puts you in touch with other people who are affected by the disease. They’ll share their own experience with treatment, lifestyle, family and work issues. And they can answer many of your questions because they’ve been their too.

“We were completely blind-sided by the diagnosis and I had so many questions. You can read text books and manuals but there is a time when you need to talk to someone, someone who understands.” Kidney Connect Program Participant

www.kidney.ca

Summer 2011 / Kidney Living /

LIVING WELL

Northern Exposure Vacations and camping can be overwhelming for individuals on dialysis. by Trish Reynolds

“It’s been a great resource for us to connect with patients while, of course, providing patients and their families with such a wonderful get-away”

Mark and Stacey St. Cyr

un at the camp, time in the wilderness, watching sunsets by the water is something we often take for granted. For a group of patients living with kidney failure in Northwestern Ontario, traveling to camp with their families became a new reality last summer. The renal family camp was founded by Mark and Stacey St. Cyr with major assistance from The Kidney Foundation of Canada, Northern Superior Chapter and funding by the Metro Lions Club in Thunder Bay. The Wilderness Discovery Resort on the shores of Lake Shebandowan was a place the St. Cyr family had visited over the years. Stacey, a peritoneal dialysis patient, was able bring her PD cycler to the resort with no issues in doing her dialysis exchanges. The resort is on the main power grid and had running water so there were never any worries about doing her treatments. The more they thought about it, it only made sense to host the renal family camp at this location, as it was also barrier free. “During our vacations, Stacey and I discussed how nice it would be if more families affected by kidney failure could experience the chance to enjoy the beautiful surroundings with their families,” said Mark. A year later, after approaching and working with The Kidney Foundation of Canada and receiving funding from the Metro Lions Club, the renal family camp became a reality in the summer of 2010. The camp’s goal, simply put, is to improve the quality of life for renal patients and their families. “In our inaugural year we had eight families attend the camp and most of them have continued on to become great supporters of The Kidney Foundation. Some have attended the walk; one family member joined the board; and several others have attended events, canvassed, and expressed interest in doing more. It’s been a great resource for us to connect with patients while, of course, providing patients and their families with such a wonderful get-away,” said Lisa Cashin, Northern Superior Chapter Manager. Guests at the camp found themselves swimming, basking in the sun, paddle boating, and canoeing. Children enjoyed the new playground and the zipline was in constant use. And what camping experience would be complete without fishing? Fishing for walleye/pickerel, smallmouth bass and northern pike from the dock and on one of the two pontoon boats, as guests climbed aboard for a scenic tour of Lake Shebandowan for the afternoon was an obvious highlight. “While the traditional camping experiences of fishing and swimming and time chatting around the campfire were fun for all, [the real enjoyment] was the connection and friendships we made talking with people who understood the trials of living with kidney disease,” said Mark. “Many guests had arrived at the renal family camp as strangers but left as friends with a special connection,” he added. Patients in the Thunder Bay area can speak with their renal social worker for additional details. For more information about camps supported by The Kidney Foundation, visit the Programs and Support page at www.kidney.ca/ontario. 

 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.

/ Kidney Living / Summer 2011

www.kidney.ca/ontario

LIVING WELL

Looking at all the Options The Ottawa Hospital poster campaign aims to create awareness about dialysis options. by Stacey Scott

he Ottawa Hospital wants to get patients thinking about their treatment options when it comes to managing their kidney failure. To help raise awareness, they have launched a poster campaign aimed at creating awareness and sparking discussion among dialysis patients. Initiated by a province-wide mandate to grow home therapies by 30 percent, a multi-disciplinary group of health professionals came together for a brainstorming session on how they could enhance the profile of home dialysis among their patients. “We wanted to get the word out and spark discussion,” says Colleen Cuddy, Project Leader, of Chronic Kidney Disease Prevention Management project at the Riverside Campus. The campaign features two posters that showcase nine local kidney patient portraits taken by Cécile Archibald, a local Ottawa photographer. The posters highlight the patient diversity and provide great insight as to why they have chosen home dialysis. “We wanted to highlight what they do in the active living poster,” recalls Cuddy. “And we wanted people to get to know them in the portrait poster.” Using real patients that are already having success with home therapies in the campaign was a good way to create engagement and strengthen relationships among the hospital’s healthcare providers and their patients. “We wanted to highlight the diversity of people who are able to perform their dialysis at home; younger, older, men, women,” says Dr. Zimmerman, Director of the Home Hemodialysis Program. “Most patients can benefit from a home treatment and all of the people approached were keen to be involved.” Being diagnosed with kidney disease and then having to go on a dialysis treatment as a result can be overwhelming. The hospital wants to ensure its patients get the balanced information they need regarding their care and support. The group hopes that by displaying these posters, it will encourage people to talk to their healthcare providers about treatment options, in particular the two options for home based therapies, peritoneal dialysis and home hemodialysis. “The whole chronic kidney disease management project was created to help patients manage their chronic kidney disease and have confidence in their own self-management skills,” says Cuddy. “You have to get to know your patient and what they value.” The Ottawa Hospital provides services to patients experiencing kidney disease and is advancing its commitment to helping people with renal failure choose treatment options that fit their lifestyle. The series of posters have been distributed to hospital campuses and dialysis units across the city and they are now being circulated around the country to various hospitals to help raise awareness. 

www.kidney.ca/ontario

Summer 2011 / Kidney Living /

Photo credit:BigStockPhoto.com/425508

LIVING WELL

To Tell, or Not To Tell . . . Do I tell my prospective employer about my illness? by Jason Reid

isclosing kidney disease or any chronic illness to a prospective employer is a tricky matter. While some organizations pride themselves on accommodating sick or disabled workers, others are less understanding. There are certain jobs where physical fitness is a pre-requisite, but generally a person’s health issues are considered private and do not need to be disclosed. However, if an illness affects a person’s ability to do his or her job in a reasonable way, the employer should know about it. A good rule of thumb is this: if your illness will have a significant effect on your productivity within the first six months of your job, it may be best to mention it before you sign your employment papers. The initial interview is a time for you to show yourself at your best. This is where you let them know all of the strengths you will bring to the job. You may not want tell them about your illness unless asked a direct question about the ability to do your job. Save it for the negotiation phase. If or when you do disclose your illness, try to avoid drama or long explanations. Stick to the facts, talk about how you have successfully worked through health challenges before, and re-emphasize what strengths you bring to the job. There are other circumstances where you may be required to disclose at least some information about your illness. They may include the following: • Your employee benefit plan requires you to submit claims directly through your employer. • Your employer has an absenteeism policy that requires you to provide a doctor’s note if you miss a certain number of working days. • You are requesting an accommodation. You will have to provide enough information to the employer so that they can accommodate you properly. There are both risks and benefits to disclosing your illness. The risk is that your employer or manager may treat you differently. The benefit is that disclosing your illness can allow your employer to provide you the support and accommodation you need to do the job to the best of your abilities. 

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.

Jason Reid runs Sick with Success® which provides life, career and performance coaching for people affected by chronic health conditions.

/ Kidney Living / Summer 2011

www.kidney.ca/ontario

EAT TO LIVE

Dining Out There is no need to stop enjoying a meal at a restaurant when you are on a renal diet, but it takes some planning to be successful.

estaurant food is higher in sodium and phosphorous and portions are generally larger. Having a good understanding of your diet is the first step. It is important to make good decisions based on your diet needs. Speak to your renal dietitian if you have questions.

Plan ahead Choose a restaurant where it will be easiest to select the foods you need. Call ahead and ask questions or check out the menu on their website. Restaurants where foods can be made to order are the best. Cut back on serving sizes, fluids and foods high in sodium and potassium, earlier in the day. Remember to bring your medications, including phosphate binders, that you take with your meal.

Make your choices Read the menu carefully and donâ&#x20AC;&#x2122;t be afraid to ask questions. Ask for special requests, such as substituting rice for potatoes, ask for dressings and gravies on the side, or preparing the entrĂŠe without salt. Ask for sandwiches without cheese or pickles. Choose broiled or grilled foods, instead of foods breaded or fried. Avoid appetizers unless you have one for your main meal.

Breakfast choices by Pat Forster, Renal Dietitian, Niagara Health System

Eggs are a good choice, prepared without salt. Avoid fillings with cheese or cured meats and choose low potassium vegetables. Ask for french toast, toasted white or sourdough bread, bagels, or english muffins. Choose apple or cranberry juice or lowpotassium fruit.

Lunch and dinner choices Good choices are grilled, broiled or baked chicken, burgers, steak, fish or pork, prepared without added salt. Side dishes of steamed rice, buttered noodles or pasta with oil and garlic with a small green salad with dressing on the side or low potassium vegetables such as green beans, cauliflower, carrots or cabbage are good recommendations. Avoid casseroles and mixed dishes, as they are often higher in sodium, phosphorous and potassium. Dessert choices of sorbet, fruit pie with low potassium fruits or plain cake or cookies are better than puddings, cheesecakes or anything chocolate.

Beverages Be careful with your fluid intake. Since the foods may have more potassium and phosphorous, try drinking water. Other choices are non-cola drinks or herbal tea.

Fast foods Best choices are hamburger on bun with lettuce and onion with mustard, grilled or broiled chicken sandwich or tuna, egg salad, roast beef or turkey sandwich with lettuce and onion. Choose water, brewed tea or coffee or non-cola carbonated beverage. Bon appetit! ď Ž www.kidney.ca/ontario

Summer 2011 / Kidney Living /

ADVOCACY

Speak Up! Advocacy can play a big part in any decision-making process. by Terry Young

here is truth to the old saying that “the squeaky wheel gets the grease.” Governments at all levels don’t like to make decisions in a vacuum, and stakeholders affected by those decisions want to ensure that their views have been considered as part of the process. With that in mind, The Kidney Foundation’s Ontario Government Relations Committee (OGRC) has developed an advocacy plan to highlight some of the key issues related to Chronic Kidney Disease (CKD) patients. Our plan is to tie this in to the upcoming provincial election on October 6, 2011. Working with members of the OGRC, we were able to represent a variety of viewpoints from the patient to the caregiver to the Foundation itself. The targets for our initial advocacy efforts were the healthcare critics from the two opposition parties, Christine Elliot of the Progressive Conservative party and France Gelinas of the New Democratic Party, as well as Cabinet Minister Charles Sousa and a staff member in the Premier’s office. In the meetings we able to provide an overview of the struggles, both financial and medical, that CKD patients face, and put forward our three wishes to improve the lives of those affected by CKD (see sidebar). Advocacy can be a long process and often the gains can only be measured over a period of years. But in our case, we were able to see almost instant returns with the provincial government reaffirming a commitment for a nutrition allowance for CKD patients. As a kidney transplant recipient of almost 38 years, I have benefited personally from the value of increased awareness around CKD and end stage renal failure. Through advocacy efforts, we are able to draw attention to the needs of our kidney community. We need your help to educate candidates in the upcoming provincial election. You can speak up for people living with kidney disease by writing letters to local candidates, attending and asking questions at the local candidates meeting, visiting candidates in their offices and asking questions, and of course, voting on election day. 

Key Messages

Terry Young is Vice President of The Kidney Foundation of Canada, Ontario Branch Board of Directors and President of the Central Ontario Chapter Board.

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. 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.

/ Kidney Living / Summer 2011

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. www.kidney.ca/ontario

ORGAN DONATION

Dr. Frank Markel

A job well done

arlier this month, Trillium Gift of Life Network (TGLN) launched an online donor registration, beginning the next chapter in its mission to save and enhance more lives through the gift of organ and tissue donation. At the same time, President and CEO Dr. Frank Markel will also be embarking on a new adventure, moving on after six years at the helm of Ontario’s organ and tissue donation agency. Dr. Markel has been a driving force at the agency, spearheading initiatives which have directly saved and enhanced lives. Under his leadership, Ontario has become a leader in organ and tissue donation in Canada, implementing donation best practices including the introduction of Donation After Cardiac Death and launching numerous communication activities to raise awareness of the need for organ and tissue donors. One Life . . . Many Gifts, a secondary school curriculum developed in partnership with The Kidney Foundation of Canada and London Health Sciences Centre, is a program of which Frank can be especially proud. Almost 1,000 teachers in nearly 600 public, Catholic and francophone schools in the province have received training on how to convey the vital importance of organ and tissue donation and transplantation to their students. This is an accomplishment few other non-mandated education programs have achieved. This work encapsulates the legacy Frank will leave: his work in raising the numbers of registered donors in Ontario has built a strong and solid foundation, and his legacy will be felt by all of those who will receive a second chance at life. 

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

Summer 2011 / Kidney Living /

VOLUNTEERS