Kidney Living - Fall 2012

KIDNEY

living www.kidney.ca/ontario

Fall 2012 Volume 5 • Number 2

A PUBLICATION OF THE ONTARIO BRANCH

When Losing is Winning

What’s in this issue – Fall 2012 3 4 5 6

Nany and Andy Paying It Forward When Losing is Winning Diabetes patients and GPs don’t agree on most worrisome complications

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Kidney Clothes Program

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Making Memories at Camp

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Unforgettable

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Mark this Date

From Dialysis to Triathlon Kidney Community Raises $725,000 at Give the Gift of Life Walks

Creative Fundraising Boosts Team Support Over the Top Caring for the Caregiver Community Highlights

Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca COMMUNITY CONTACTS Brampton 1.800.387.4474 ext.4120 Brant County 1.800.387.4474 ext. 4130 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 pchan@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

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

Kidney Kids

Recipes – Renal Shepherd’s Pie – Slow Cooker Beef and Barley Soup

Cover photo: Dwayne Moore after receiving a kidney transplant from his sister, Lisa Calcutt.

Story on p. 5.

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The Kidney Foundation of Canada, Ontario Branch 2012-2013 Board of Directors Executive Terry Young, President Harvey Thomson, Past President Niloufer Bhesania, Treasurer Directors at Large Roza Berkowitz George Clark Craig Kerr June Martin Janet Morgan Ken Mylrea Brian Porter Shirley Pulkkinen Greg Robbins Mary Smith Alison Thomas 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

©2012. Kidney Living, the contents of which is subject to copyright, is published two 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.

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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 northbaykidney@gmail.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 ccoghlan@kidney.on.ca

Return Undeliverable Canadian Addresses to: Trish Reynolds, Communications Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:communications@kidney.on.ca.

Phone:1-800-387-4474.

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ORGAN DONATION

Nany and Andy

Theresia, Nany and Andy at Niagara Falls

When he needed a kidney transplant, his sister didn’t hesitate.

by Pamela Sleightholm

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any Herijati remembers every date—the birthdays of her eight children, 22 grandchildren and three great-grandchildren; the day she donated a kidney to her brother, Andy Sucipto; and the day her brother and his family moved to Canada from their home country, Indonesia.

Nany still lives in Indonesia, but traveled to Ontario this year to visit Andy and celebrate the 25th anniversary of their transplant. The siblings celebrate this anniversary every year whether they’re together or apart—Nany usually hosts a feast day for family and friends, making Nasi kuning, a traditional Indonesian dish of rice cooked with turmeric and served with meat and vegetables. In Canada, Andy, his wife Theresia, and their family celebrate in different ways, including days spent volunteering at a soup kitchen in Parkdale.

Nany and Andy went into surgery on February 2, 1987 at a teaching hospital in the Netherlands—he was in his late 30s, Nany in her late 40s. When he learned he needed a transplant, his mother was the first to offer, but at 78, the doctors preferred a younger donor. Nany, his big sister, was a perfect match.

Andy had decided to go abroad for the procedure, even though his doctor www.kidney.ca/ontario

in Indonesia had already scheduled the surgery locally. “I didn’t trust that system,” he says. The 64-year-old’s recollection of being on hemodialysis there shows why.

He and Theresia talked about how they had to pay a deposit before starting each treatment.

Andy, who owned a construction company in Indonesia at the time, paid for himself and Nany to travel to and from the Netherlands. Nany arrived in January 1987 and left two months later with a 40-centimetre scar that runs from her left hip to her left underarm. Andy went back to Indonesia in March, but returned to the Netherlands several times for follow-ups.

In the two years following the transplant, Andy realized that he may not be able to reach optimum health in Indonesia. He decided it was best to move away from his home country and emigrate to Canada.

It was a difficult transition. He and Theresia had young children, family in Indonesia, a successful business, and they weren’t fluent in English. When they came to Canada in 1989, Andy got work as a technician on construction sites. “As an engineer, I had never used my muscles to work before,” he says. “I felt blessed.” His job included carrying bags of concrete up flights of stairs—a huge change from his old position where he employed about

300 workers. Despite the change, Andy felt blessed to have the job and went through a series of exams to become licensed as a professional engineer in Ontario. Together the family worked hard, learned English and got involved in their community. Despite his nervousness about infection, Andy’s health and quality of life improved.

Theresia says she was happy to come to Canada for her family. “My kids still have their father and Andy can meet his grandchildren,” she says.

Nany was happy that Andy was able to get well, but was obviously sad to see him leave Indonesia. They stayed in touch by phone at first, and now communicate through Skype. At 74, Nany, with her single kidney, is still in great health and can make the long journey to Canada every now and then. On this year’s milestone trip the siblings took in Niagara Falls, Cirque de Soleil, African Lion Safari and Midland and traveled all over the GTA. But their fun was interspersed with reflection and benevolence, spending time with family, volunteering at a mission in Parkdale, and preparing food for a busload of people living in poverty in honour of their 25th anniversary. 

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ORGAN DONATION

Paying It Forward Toronto lawyer Jason Kroft understands kidney health, transplantation and the strain it can put on families.

by Pamela Sleightholm

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ason Kroft has lived with kidney disease since childhood and received an organ donation from his mother in September 2000. Ten years later he established the Jason Kroft and Family Fund to support kidney recipients and their families as they face the challenges of transplantation.

Warren Riley, a writer and photojournalist, got help from the Krofts. Before his kidneys failed, Warren could never have predicted how the career that had taken him all over the world would be interrupted, or how a stranger’s kindness would affect his life.

“I was on assignment in Mexico when I lost my kidneys,” he says. At 58, Warren didn’t know what this would mean for his life: six years of dialysis, being too unwell to work at times and exhausting his savings.

Living north of Minden, Ontario—in a home off the power grid—he remembers warming his peritoneal dialysis bag on a black rock outside, on the dash of his car, or over the fireplace mantel. After four years on PD, Warren had to switch to hemodialysis. “I had 800 days of going through that,” he says. But eventually the day came when he learned he had a potential donor in Ottawa, a young man who had spent six weeks on life support following a car accident. A transportation service drove Warren immediately after dialysis—four hours through a snowy December night—arriving in the capital after midnight. He told the driver to wait for him, still not believing that the transplant would actually happen. But he went into surgery in the early morning and was walking around with his new kidney later that same day.

After the successful transplant, Warren had to return every three months for followups. His health was good, but the cost of a motel, meals and driving 400 kilometres each way was too much. He spoke with his social worker, who got in touch with The Kidney Foundation. A week and a half later, he received a cheque from the Jason Kroft and Family Fund to cover the expenses of his next trip to Ottawa. “It was really something to know that I didn’t have to worry,” he says. “I had no idea there were people like this that would contribute to people like me. And they didn’t know they were helping me—it was completely anonymous. I was so appreciative that other human beings gave of themselves.”

This year Warren will travel to South America and the Caribbean on his first foreign assignment since his kidneys failed. “This all wouldn’t have happened if it hadn’t been for people like the Krofts,” he says. “They should be recognized and honoured for their contributions and their consideration of other people.”

This story is reprinted from the 2011 Kidney Foundation Annual Report. Visit our website at www. kidney.ca/page.aspx?pid=309 to read more inspiring stories.  Warren Riley

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www.kidney.ca/ontario

ORGAN DONATION

When Losing is Winning If you could donate a kidney to a loved one who needed it, would you do it?

by Pamela Sleightholm

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hat if donating that kidney required you to overcome a hurdle that you had been trying to get over for years, without success?

That’s the challenge Lisa Calcutt faced in 2010 when she decided to donate a kidney to her brother, Dwayne Moore. She was a perfect match, but was told that she needed to lose weight to donate.

“I had struggled with my weight for a couple of years,” she says. “Between college and having kids, that’s when I really started putting it on. But I was a perfect match for my brother, it was up to me to want to lose weight, but you feel more pressure when you need to follow through.”

Jennifer Cross, a nurse practitioner and the Living Kidney Donation Coordinator at London Health Sciences Centre, says this is a pretty common scenario. “When you look at the general population,” she says, “there’s a large percentage that’s overweight or obese. When people come forward to donate, you’re capturing that population as well.”

When assessing prospective living donors, the goal is to find an optimum match to the recipient while ensuring that the donor’s health won’t be compromised.

Dr. Amit Garg, Nephrologist at the London Health Sciences Centre and Professor of Medicine at Western University, says the donor’s health after transplant is important on many fronts. If there are complications, it can impact the donor and his www.kidney.ca/ontario

Lisa and her brother, post transplant in August or her family; the recipient, who may feel responsible for the donor’s condition; and the public’s perception about organ donation.

Dr. Garg and Ms. Cross say living donors need to be a healthy weight for three main reasons: • being overweight is a risk factor for developing diabetes, which could lead to kidney disease in the future • as weight increases, blood pressure tends to go up; hypertension can put additional strain on the single remaining kidney • technically, having to go through extra abdominal fat makes the procedure of removing a kidney more difficult for the surgeon and may cause a longer recovery time for the donor.

Prospective donors from all over the province are assessed at the transplant hospitals, so Jennifer says it’s important for them to connect with a support system close to home, consult with their family doctors and meet with a dietician for weight loss and nutritional counselling.

She stresses that the goal is not to lose weight for the surgery alone; it has to be a lifelong commitment to good health.

When Lisa was assessed, she was told she needed to lose 15 pounds before she could donate. “It was a struggle for a couple of months. I knew the rules; I just had to follow them,” she says. “I was going to the gym but not getting into enough of a routine.” She got the help she needed

through her best friend and workout buddy, a membership at the Y, and by using a smart phone app to monitor caloric intake and exercise. But even though her initial motivation was to help Dwayne, Lisa says it was important to put herself first. “I had to think about him second. It was just too much pressure to think about losing weight only for the surgery.”

By summer 2012, when the siblings met in Toronto for the transplant, Lisa had lost an incredible 55 pounds by exercising and tweaking the way she and her family eat. The surgery was a success and Dwayne’s new kidney started working right away. Just a few weeks later, Lisa was back on her feet, coordinating the Give the Gift of Life Walk in Strathroy.

Dr. Garg says that though there isn’t long-term data on the outcomes of living donors and weight maintenance, researchers are studying 800 living donors from 12 transplant centres across Canada right now to shed some light on the effects. But he says for all living donors, regardless of weight, it’s important to maintain a healthy lifestyle and get annual checks on blood pressure and kidney health.

Lisa says she feels better for the healthy changes she’s made. Her family notices her appearance and she has more energy.

“And there’s a kind of joy in me, knowing I helped my brother,” she says. “People notice and that makes me feel better in my heart—and that makes recovery faster.”  Fall 2012 / Kidney Living /

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LIVING WELL

Kidney Complications a Particular Concern for Physicians

BigStock Photo: 2373774

Diabetes patients and GPs don’t agree on most worrisome complications National survey reveals disconnect between what Type 2 diabetes patients believe and what doctors are telling them

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arnings about the severity of some complications associated with Type 2 diabetes may not be getting through to Canada’s diabetes patients, according to findings from a national survey.

While heart disease and declining kidney function top the list of Type 2 diabetes complications that general practitioners say they are most concerned about, blindness and amputation are patients’ top worries. When asked which body part will be most impacted by Type 2 diabetes, patients selected feet and eyes ahead of major organs like the heart and kidneys.

“These statistics are quite concerning,” says Dr. Richard Tytus, family physician and associate clinical professor at McMaster University in Hamilton, Ontario, who contributed to the design of the survey. “Patients are underestimating the life-threatening impact of heart or kidney complications and focusing more on less fatal complications. The reality is that you won’t need to worry about being blind if your heart stops beating or your kidneys shut down.”

The results from this survey are not surprising for John Mash of Oshawa. John was diagnosed with diabetes at the age of 25, and like those surveyed, he didn’t worry about the complications of diabetes.

“I didn’t pay a lot of attention to my health back then, I didn’t think anything was going to happen to me” said John. When his health began to seriously decline at the age of 40, John was fortunate to find a family physician who truly understood diabetes, probably because he too is a diabetic. Unfortunately, by this point, serious damage had taken its toll not only on John’s vision, but on his kidneys as well.

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According to the national survey, less than half of Type 2 diabetes patients say they are worried about declining kidney function and 47 percent don’t even consider themselves to be at high risk of developing kidney disease because of their diabetes.

Dr. Tytus notes that these statistics are particularly concerning, given that chronic kidney disease associated with diabetes is the leading cause of kidney failure in Canada.

“High blood glucose causes damage to the delicate blood vessels in the filters of the kidneys, and as the diabetes progresses, these filters can become so damaged that the kidneys fail,” says Dr. Tytus.

“Diabetes patients don’t appear to be concerned about this, but they should be.”

John can certainly relate. “I know from my conversations with other diabetic patients that they’re often most concerned about vision loss—perhaps because it’s more physical,” said Mash, “and I have to remind them that the same deterioration that happens to their eyes is also happening to their kidneys. It’s just as serious.”

Nadine Valk, National Director of Programs and Public Policy with The Kidney Foundation of Canada, which also contributed to the survey design, agrees. “Many people with diabetes could have serious kidney damage without being aware of it.

Signs of early kidney damage can develop in 50 percent or more of people with diabetes. The challenge is that there are usually no specific symptoms of kidney disease until the damage is severe.”

For John, his experience has come full circle. Diabetes has certainly had an impact on his life. Yes, he has vision loss, he was on dialysis for four years and now thanks to the gift of life; a kidney donation in 2009 from his niece, he can also say he is a kidney transplant recipient. Hindsight is 20:20. “Don’t take your health for granted.

Educate yourself and others about kidney disease—if you are a diabetic, make sure you’re talking to your doctor about kidney health.” As Kidney Connect Peer Support Volunteers, John and his wife Linda are certainly using their experience to help others. By sharing their story and offering their insight they hope that others will learn from their experience.  www.kidney.ca/ontario

BUILDING A FOUNDATION LIVING WELL

Kidney Kids Child ambassadors spread the word about the work of The Kidney Foundation.

by Pamela Sleightholm

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oing to school five days a week, having a carefree water fight on a hot summer day and enjoying a peanut butter and banana sandwich—just a few of the things that take on new meaning for a kid with kidney disease.

Then there are the impromptu biology lessons for curious friends, doing homework in a dialysis chair, and for 12-yearolds Austin May and Brayden Anderson, getting involved with The Kidney Foundation to help spread the word about kidney health and organ donation.

Brayden has c-anca, an autoimmune disorder that’s damaging his kidneys.

He explains what’s going on in his body with a military analogy. “I tell my friends that my kidneys are the generals and the white blood cells are the soldiers. But the soldiers have turned on the generals.”

Despite frequent hospital stays in Toronto and time in the dialysis chair, Brayden gets amazing grades, especially in health studies. He makes sure to fill his friends in on what he’s going through, even asking them if they’re scared of his dialysis catheter tube before getting into a summer water fight.

Brayden’s five-month stay in SickKids Hospital started in March 2011 after learning his kidneys had failed. He had been sick with more than his share of problems before the diagnosis—coughs, colds, infections, nausea and diarrhea.

www.kidney.ca/ontario

Brayden Anderson “They thought it was food poisoning but saw that I had a very high white blood cell count,” he says. “My immune system was in overdrive.”

While Brayden stayed in hospital—going through dialysis and chemotherapy to lower his white blood cell count—his mom stayed in Toronto at Ronald McDonald House and his dad made the threehour journey whenever he could. He kept up with his schoolwork in the hospital and stayed in touch with his friends through Facebook and Skype with a laptop and webcam provided by the hospital. He also did art, drawing his favourite cartoon character donating a kidney and painting a clown from the hospital’s Therapeutic Clown Program, a piece he donated to “A Brush of Hope - Toronto edition,” an art auction for The Kidney Foundation.

Now he’s on home hemodialysis, but has to wait for the c-anca to be in remission for one or two years before he’s eligible to receive a transplant. He says he’s a little bit nervous about getting a transplant, but knows that it will be good for him. In the meantime, he reads what he can about organ donation, watches videos on YouTube, follows The Kidney Foundation on Facebook and shares information with his friends.

After spending so much time in the hospital Brayden says he appreciates medical staff who are upfront and honest with him

about his illness. It comes as no surprise that when he grows up, Brayden wants to become a paramedic to help others going through medical problems.

This past September, Austin May gave a speech, spoke to the media and raised money for Renfrew’s Give the Gift of Life Walk. It was the first year he’s participated in the Walk and the first year he has been personally affected by kidney disease.

In February 2012, Austin went to the hospital in Renfrew, Ontario because he was having trouble with his knees. Learning that his kidneys were failing and that he has bone disease came as a shock to him and his family.

“I felt kind of sad,” Austin says. “It was scary learning that my kidneys were failing, but now I feel better. I guess I just got used to it.”

By March he had started on dialysis at the Children’s Hospital of Eastern Ontario in Ottawa, a 100-kilometre journey from his hometown, Douglas. “The nurses at CHEO are spectacular,” he says. “They’re really, really nice and they showed me how a dialysis machine works.”

Austin’s mom, Barb May, says it was very painful to learn that her son has kidney disease. He has three sisters, but no one else in the family has experienced kidney failure. She says that despite the surprise diagnosis, Austin has remained

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Austin May and Craig Dunbar, Fund Development Coordinator of The Kidney Foundation of Canada at the Renfrew Walk

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positive. “We’re very proud of him. He’s had an easier time adjusting than we have. It’s hard to get upset when he’s so positive.”

Barb drives Austin to CHEO for dialysis three times a week—a drive that can take up to two hours each way depending on the weather. They’ll leave for the hospital at 6:30am and return around 2:30pm.

While at dialysis, Austin does Language Arts and Math with a tutor; he attends class on Tuesdays and Wednesdays.

“He does well in school,” Barb says.

“But he had 55-and-a-half days of absence last term.”

Missed classes weren’t the only snags of the long drive to dialysis. In a hard economy, the Mays were already financially stretched—medication and travel costs put the family into unforeseen hardship.

“The Kidney Foundation was wonderful to us then. They helped us with money for medication, it was really a godsend,” Barb says.

As Renfrew’s Walk ambassador, Austin’s participation included a TV news interview at the event. To view a news clip of Renfrew’s Walk, go to www.youtube. com/watch?v=6HSV9qm97NM Austin says he wants to continue supporting the Foundation to raise money to help even more kids. 

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LIVING WELL FUNDRAISING

m a r atio g o n Pr

Kidney Clothes Program

Recycling clothing, shoes, bedding, draperies, etc. supports Kidney Foundation research and patient programs

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varlier this year, The Kidney Foundation launched an exciting new program to help the organization raise new funds to fight kidney disease. The Kidney Clothes Program helps turn your gently used clothing into funds for leading kidney research.

The program, launched on April 23, 2012 will come right to your doorstep to pick up items at no charge. The household pick-up program is currently available in Sault Ste. Marie and surrounding areas including Sudbury and North Bay, as well as in Barrie, Brantford and the Greater Toronto Areas. Indeed, for individuals, groups, volunteers and chapters willing to help organize collections, we can travel much greater distances to pick up volumes in excess of 100-120 bags.

“Like the Kidney Car Program, the Kidney Clothes Program is another great recycling initiative which not only raises money to fund the programs and initiatives of The Kidney Foundation but also helps in the global effort to reduce, reuse and recycle,” says Sylvia Krampelj, Program Manager for Kidney Clothes.

Kidney Clothes invites you to donate all cloth-based items including: • All gently used clothing • Footwear and outerwear • Belts, ties and purses • Yarn, fabric and patterns • Blankets, bedding and linens • Draperies, pillows and cushions • Luggage, sleeping bags • Small household items such as books, dishes, tools and toys.

If you wish to donate clothing and household items please call 1-800-414-3484 or email kidneyclothes@kidney.on.ca.

Clean out your closets and call Kidney Clothes for a free pick-up.  www.kidney.ca/ontario

LIVING WELL

From Dialysis to Triathlon

by Christine Langlois

www.kidney.ca/ontario

Photo credit: Patricia Treus

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fter being tired from intense headaches for some time, Anthony Parsons decides one morning to go see the nurse at the Senate of Canada, where he works. The next thing he knows, he is on dialysis 12 hours a day.

Without knowing, Anthony, in his early 30s, suffered from glomerulonephritis, an inflammation of part of the kidney.

“When I arrived at the hospital, the doctors told me that my kidneys were only functioning at five percent capacity. I was poisoning myself,” he explains.

He was quickly admitted to hospital and then transferred to the Riverside Campus of the Ottawa Hospital, which houses Ottawa’s kidney specialists.

“The isolation was the hardest part. I didn’t see my work colleagues anymore. I couldn’t do any exercise. I watched TV. It was depressing,” he recalls. “Luckily, my wife and my family were there.”

Anthony says he also benefitted from The Kidney Foundation of Canada’s Kidney Connect peer support program and had the help of a social worker from the Ottawa Hospital. The Kidney Foundation of Canada is one of the trusted Canadian health charities that benefits from funds

Anthony Parsons with his wife Geneviève Ladouceur at the 2011 Give the Gift of Life Walk. raised by Healthpartners through the annual Government of Canada Workplace Charitable Campaign launched in October.

“Thousands of Canadians like Anthony have been helped thanks to payroll donations to Healthpartners by Government of Canada employees,” said Eileen Dooley, National Executive Director, Healthpartners.

“Together we have raised $80 million to find cures, build awareness and run local support programs for people facing critical illnesses and their families.”

Staying positive despite his condition, Anthony considers himself lucky for the treatment and support that he has received.

“People have said that my dialysis was a shame. I told them: ‘It isn’t a shame—it keeps me alive!’”

The next step was to find a suitable donor. One by one, each member of Anthony’s family participated in compatibility tests, except for his mother who was in remission from cancer.

“She found it difficult not to be eligible to be a donor,” he recalls. “For her, it was her responsibility as a mother to help me.

She felt completely helpless.”

Finally, test results showed one compatible donor in the family: Ryan, Anthony’s youngest brother.

After a year on dialysis, Anthony and Ryan underwent surgery. Upon waking from the long operation both asked the doctors the same question: “How is my brother?”

Anthony attributes his luck to the tremendous advances in research. Each year he helps to raise funds to support the work

of Canadian researchers by participating in The Kidney Foundation of Canada’s Give the Gift of Life walk.

“Without the Foundation, there would not be enough money for research—we need to support the Foundation,” he insists.

Two years later, you wouldn’t know by looking at him that Anthony had any health issues. He recently finished third in his age category in a triathlon and is now training to complete the Mont Tremblant Ironman, which includes a 3.8km swim, 180km cycle and 42km run.

“I think I could do it in about 11 or 12 hours,” he guesses.

He was full of praise for Healthpartners, The Kidney Foundation of Canada and the Riverside Campus of the Ottawa Hospital.

“I am happy that they let me tell my story,” he said. “It is important to let patients know that there is hope, and above all to remind them to take advantage of all the resources out there. I never thought that I would need a social worker in my life and I was hesitant to go and see her, but it is probably the best thing that I did.”

He also has kind words for his wife, with whom he was married just one year when his illness was discovered.

“I would not have been able to do it without her,” he said. “She supported me from the start.”

With similar support from his family and his friends, there’s a very good chance Anthony has as a long Ironman career ahead of him.  Reprinted with permission from Health Partners Fall 2012 / Kidney Living /

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FUNDRAISING

Kidney Community Raises $725,000 at Give the Gift of Life Walks Taking Steps Inspiring Hope

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Visit our FlickR gallery at www.flickr. com/kidneyfoundation to view more walk photos.

alk Champion Angela Dutrisac (and cover family for this year’s walk materials), shared with fellow walk participants her journey with kidney disease.

Angela’s remarks sum up the many of the feelings and comments shared at many of the walks this year. Thank you for taking steps and inspiring hope.

“Like so many of you, who are also on dialysis and those of you who have memories of being on dialysis – kidney disease has changed my life. Where I once felt so independent, I feel I have to depend on my husband and children to help me. I depend on a machine to filter my kidneys and ensure that I’m ready to meet the challenges of a new day. I also depend on the medical professionals for the compassionate care I receive.

“But in many ways I’ve also gained strength. I gain strength by knowing that I’m not alone. Looking around the park today, I realize that we all have a common bond here. We are connected in some way to kidney disease whether as a patient, a family member, friend or a medical professional. I gain strength knowing that together we are taking strides to ease the burden of kidney disease. I gain strength daily through the support of my amazing husband (he's my hero,), my four sons and my family members.

I have an incredible support system of friends, family and my work colleagues who support my fundraising efforts every year.

“I also gain strength in knowing that The Kidney Foundation is here to help lead the way in kidney research, to ensure that investments are made to investigate new treatment options, to help advocate on my behalf and ease the burden of kidney disease.

“Today, our kidney community will come together to take strides and inspire hope.

Hope for a future without kidney failure.”  Angela Dutrisac, Etobicoke A portion of Angela’s remarks at the Toronto Give the Gift of Life Walk

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www.kidney.ca/ontario

FUNDRAISING

www.kidney.ca/ontario

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LIVING WELL

Making Memories at Camp The Kidney Foundation is pleased to support three camp experiences for individuals living with kidney disease. Camps provide the opportunity for young and old alike to share in the beauty of summer. From fishing to canoeing, campfires to mini-golf; there is something for everyone including exceptional care for those needing treatment. Your support of The Kidney Foundation makes opportunities like Lion’s Camp Dorset, the Northern Renal Camp at Lake Shebandowan and the Kids Transplant Camp at Lake Joseph possible.

Mini Golf Tournament at Camp Dorset

“Thank you so much for granting our family the opportunity to go to Camp Dorset in August. We were so thrilled and very happy to be able to go and enjoy the week. We had an awesome time and really enjoyed the experience. It was just amazing to be on a vacation up north in the beautiful Muskokas and be able to have my medical needs looked after; it meant so much to us.”

Lori Kraemer

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Lion’s Camp Dorset

www.kidney.ca/ontario

LIVING WELL “It is really hard to capture in words the magic of the Kids Transplant Camp. This magic can be seen in the spirit, energy and enthusiasm, and bonds of friendship that camp inspires.

Starting from the bus ride up, and throughout the week, we heard the kids sharing their incredible transplant stories, comparing scars, discussing the medications they require, and the journeys they have taken. We saw children who were timid and nervous come together as they tried new things, explored new environments and met new friends. It was inspiring to see older children helping younger ones, a teenage girl braiding the hair of a littler one, or an experienced fisher helping to show a novice how to cast his line—and share in his exuberance when he caught his first fish. Thank you to the many volunteers and The Kidney Foundation of Canada for helping these children to make incredible memories.”

Camp Advisory Committee Stacey Pollock Bar-Ziv, Emily Ghent and Christina Kosar

The Magic of Camp at Lake Jo

What a Catch!

“Cornelius shows off his second catch of the day at Renal Camp, Lake Shebandowan in Thunder Bay. Although our trip was a short two-day/ one-night stay, Cornelius had an unforgettable experience. Together we filleted our fish, enjoyed an evening bonfire with other family members and his enthusiasm was so ecstatic; we even had time to canoe and fish at sunrise. Cornelius and I look forward to attending Renal Camp again next summer, hopefully for a longer stay.”

Jordan Williams, Volunteer

Cornelius with volunteer Jordan www.kidney.ca/ontario

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EAT TO LIVE

Renal Shepherd’s Pie Preparing for Hibernation

As the seasons change so does the way we prepare our food. It’s that time of year to get ready for the colder weather, and what better time than to think about preparing food for your freezer? Here are just a couple of renal-friendly recipes that can be made and frozen; ready for you to have when you don’t feel like cooking or when you just need that quick meal in a hurry.

Ingredients 6 cups cauliflower, cut into pieces and washed 2 oz cream cheese 3 cloves garlic ½ tsp black pepper 1 cup carrots, small dice 1 Tbsp canola oil 1 cup onion, chopped 1 lb lean ground beef 2 Tbsp all-purpose flour 1 Tbsp ketchup 1 cup low-sodium beef broth ½ tsp black pepper Preparation 1. Bring a pot of water to a boil. Once boiling, carefully add the cauliflower pieces and cook until very soft. During the last minute or so add the garlic.

2. Drain cauliflower and carefully put into a blender and blend until smooth.

3. Add the cream cheese and pepper and blend just to combine. Set aside.

4. Bring another pot of water to a boil and add carrots. Cook until tender but still firm.

Drain and set aside.

5. Heat the oil in a large frying pan. Add the onion and cook until translucent.

6. Add ground beef and cook until well browned.

7. Pour off excess fat, then stir in flour and cook 1 minute.

8. Add ketchup and broth and bring to a boil. Reduce heat to a simmer and cook for 5 minutes more. Stir in carrots and black pepper.

9. At this point, you can make 1 large casserole or 6 individual casseroles.

10. If making individual servings then spoon 1/6 of the beef mixture into a small casserole and top with 1/6 of the cauliflower mixture. Continue until 6 portions are made.

11. Cover with freezer wrap and aluminum foil and store in freezer for up to 2-3 months.

Bake at 350 degrees for one hour from frozen.

Nutritional analysis: Per serving: 1/6 of recipe. Calories 329 Kcal; Carb 13.7 g; Protein 26.8 g; Total Fat 18.7 g; Saturated Fat 6.8 g

www.kidneycommunitykitchen.ca 14

/ Kidney Living / Fall 2012

www.kidney.ca/ontario

EAT TO LIVE

Slow Cooker Beef and Barley Soup Ingredients 600g cubed stewing beef (3/4 inch cubes) 4 garlic cloves, chopped fine or pressed 2 cups onion, diced (1 large) 1 stalk celery ½ green pepper ½ red pepper 1 large carrot 1 tsp dried thyme ½ tsp celery seed (not celery salt) 1 tsp tarragon 2 Tbsp Hungarian paprika 3 cups frozen and chopped “spaghetti mix” vegetables 4 cups low sodium beef broth 1 cup water ½ cup bulgur ½ cup pearl barley ¼ cup parsley, freshly chopped (optional) Preparation 1. Heat a large skillet on high; add beef, onions, and garlic. Cook onions and brown beef well on all sides, about 5-10 minutes.

2. Transfer beef, onions, and garlic into slow cooker. Add herbs, spices, vegetables, bulgur and barley, then the broth and water.

3. Set slow cooker on low temperature, cover, and cook for 4 hours (until beef is tender).

4. If desired, add ¼ cup fresh parsley to garnish.

If you are going to freeze cool completely in the fridge. The soup can be stored in the freezer for 2-3 months in Ziploc bags or re-sealable containers.

Nutritional analysis: Per serving: 1 cup; 12 servings per recipe. Calories 225 Kcal; Carbohydrate 27 g; Protein 15 g; Total Fat 4.7 g; Saturated Fat 1.9 g

Recipe modification and adaptation by Shannon Chesterfield, Emily Quenneville, and Lisa Whatley, Renal Dietitians at Hôtel-Dieu Grâce Hospital.

www.kidney.ca/ontario

Stay Connected Did you know you can now receive Kidney Living by e-mail? 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 e-mail version, simply send your name, current mailing address, telephone number and e-mail address to grose@kidney. on.ca. Please put “Change Kidney Living Subscription” in the subject line.

Fall 2012 / Kidney Living / Spring

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New Challenge Campaign

Unforgettable

T

Natalie Cole

Don Cousens and Terry Young

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/ Kidney Living / Fall 2012

he Westin Harbour Castle in Toronto was the place to be on Friday, October 26, as The Kidney Foundation hosted an unforgettable gala event.

Guests were treated to the sounds of spectacular R&B group LMT Connection and an exclusive performance by Grammy winner and kidney transplant recipient Natalie Cole. Hosted by Lisa LaFlamme, CTV National News, the event raised funds for The Kidney Foundation of Canada and its New Challenge Campaign.

In addition to the spectacular entertainment, four special awards were presented to leaders within our kidney community.

The Kidney Foundation of Canada Leadership in Major Gift Fundraising Award was presented to Riva Grinshpan.

Riva is one of The Kidney Foundation’s longest-serving volunteers. Since 1999, she has put her financial training, expertise and experience to work on both sides of the equation—as a steward and trustee of donations in senior positions as President, Secretary and Treasurer at both Branch and National levels—and as a committed, fearless fundraiser and advocate for the Foundation’s fundraising priorities, including our most recent initiative The New Challenge Campaign. Riva has raised hundreds of thousands of dollars to support Kidney Foundation activities.

The Kidney Foundation of Canada Philanthropic Leadership Award was given to Ferit Tecimer and Victor Royce; Mr. Tecimer’s children, Dr. Sandy Tecimer and Daniel Tecimer, accepted the award on their behalf. Ferit Tecimer, the Owner of Humbertown Jewellers and Victor Royce, CEO of Rolex Canada have been tremendously loyal and committed contributors for over a decade. Year after year, they have generously donated not one, but a pair of luxury Rolex watches for the annual signature Gala. Donations from the world’s premier watchmaker and one of Toronto’s top jewellery establishments, have added significant sparkle and special caché to every single Kidney Foundation Gala and these donations have had a huge impact on ensuring the success of each event.

Donald Cousens was recognized for Outstanding Volunteer Service. Don is one of Canada’s most successful municipal leaders. He was Mayor of Markham from 1994 to 2006, during a period of unprecedented growth. Don is also a two-time kidney transplant recipient and

Dimitrios and Dr. George Oreopoulos with Dr. George DeVeber (centre) a long-time volunteer and supporter of The Kidney Foundation of Canada. He has been on numerous boards and committees over the last decade and through his volunteer service has made significant contributions to advance the work of the Kidney Foundation in Ontario. Notably, in 2002, The Don and Aline Cousens’ Research Fund was established, with support from many of Don’s friends and colleagues. This fund has now reached half a million dollars—making it one of the largest named funds established at The Kidney Foundation to date.

Earlier this year, The Kidney Foundation of Canada worked with the late Dr. Dimitrios Oreopoulos to develop the parameters of an important new research award. The Dr. Dimitrios Oreopoulos Award in the Prevention of Kidney Disease will establish a lasting legacy for one of nephrology’s true pioneers. The award will fund a broad spectrum of kidney research in Canada with relevance for prevention of kidney disease or its progression. The ultimate goal is to significantly increase our knowledge of prevention of kidney disease. The prevention of kidney disease was something Dr. Oreopoulos was extremely passionate about—so much so, that he organized a tremendously successful International Conference on this topic for 10 years, before his passing in April of this year. Thrilled to have this award named in his honour, “the incomparable Dr. O” was one of the Foundation’s most dedicated supporters and an incredible ambassador for The Kidney Foundation and its work. He had recently become www.kidney.ca/ontario

New Challenge Campaign

Riva Grinshpan and Ontario Branch President Host, Lisa LaFlamme, CTV National News Terry Young an Honorary Chair of the New Challenge Campaign Cabinet in Ontario. In recognition of his incredible impact and lasting legacy on The Kidney Foundation, on kidney patients, and all who had the pleasure of knowing him, as a friend, or even an acquaintance, The Kidney Foundation was

pleased to honour him with The Kidney Foundation of Canada Award, Lifetime Leadership in Kidney Care.

Visit our online photo gallery at www.kidney.ca/natalie and view the video tribute to Dr. Oreopouos. 

Dr. Sandy Tecimer and Mr. Daniel Tecimer accepting on behalf of Ferit Tecimer and Victor Royce with Ontario Branch President Terry Young

Thank you to our Auction Sponsors:

Agnico-Eagle Mines Limited, Bayview Glen Day Camp, Berani Jewellery, Berenson Fine Art, Cookie Lovers, Greenfield Golf – “Your one stop golf shop,” Kingscross Hyundai, Scarborough, MercedesBenz. My Escapades, RINX Real Entertainment, Rockway Glen Golf Course & Estate Winery, RUSH, South Hill Home, Spin Master, Sundance Balloons, Young People’s Theatre and The Feldman Family. www.kidney.ca/ontario

Fall 2012 / Kidney Living /

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FUNDRAISING

Creative Fundraising Boosts Team Support Over the Top In St. Catharines, two teams—the Kidney Krew and John Eisenhower Memorial Team­­—joined forces to organize fundraisers in the weeks before the Walks.

They worked together on a joint garage sale and barbeque raising over $1,700.

Linda, Tracy, Denise, Steph, Lisa, Allison and Jane - The Wheatley Wizzers

Y

ou’ve heard the news: the 2012 Give the Gift of Life Walks exceeded the provincial goal of $700,000. The incredible dedication of our participants and their friends and supporters was nothing short of amazing. But how did so many teams crush their fundraising goals? The answer might be in some of the creative fundraising ideas that helped push their fundraising dollars over the top. Where once teams worked together simply by joining together on event day and linking funds as a team, we now see that the walks, for many, are a year long campaign culminating on event day. From penny drives to garage sales, pig roasts to dances, 2012 Walk teams took their creative fundraising efforts to a whole new level—helping to raise awareness throughout the year. Here are just a few examples of some creative fundraising from around the province:

games and music to support their team.

Ever heard of fish bowl insurance? Guests were asked to buy insurance to ensure that they didn’t have to eat a goldfish if their name was drawn. As you can imagine, the insurance was well worth it—and a great way to raise extra dollars.

The Armitage family held their annual charity barbeque in downtown London just days before the Walk to raise funds for their team. More than $1,000 was raised to support the A-Team’s efforts, and better still, the team raised kidney health and organ donation awareness at a busy downtown location.

Brian and Jay Armitage We also heard of three little guys tugging a wagon full of baked goodies and pocket novels around the Collingwood Fairground to raise money for the Hamilton Walk. Zakery, Jacob and Lukas Hayward raised nearly $500 for the Foundation. They worked hard to honour their grandfather, Vic Hayward, who passed away last May. The Wheatley Wizzers, participants at the Windsor & Essex County Walk, organized a pig roast fundraiser with

Valerie Cronin, Ottawa Hospital Nephrons raffles The Ottawa Hospital Nephrons work hard all year long to raise funds. Team members collected items for baskets to raffle. The items in the baskets ranged from $250 to $500, all donated. 

Zakery, Jacob and Lukas Hayward

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/ Kidney Living / Fall 2012

Breanna Elliotson & Janet Pilliteri www.kidney.ca/ontario

WORKING TOGETHER and Family Peer Support Coffee Club, Oshawa 26 Kidney Connect Support Group, Mississauga 29 Impressions 2012, Hamilton

December 5

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.

Visit www.kidney.ca/ontario for the latest event postings.

November

20 Kidney Connect Support Group, Thunder Bay 20 Kidney Connect Support Group, Brantford 20 Bowl’12, Roll for Research 21 Lakeridge Health - Kidney Patient

Kidney Connect Peer Support Group Meeting, Kitchener 12 Kidney Connect Support Group, Thunder Bay 19 Lakeridge Health – Kidney Patient and Family Peer Support Coffee Club, Oshawa

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.

January

15 Kidney Connect Peer Support Group Meeting, Kitchener 16 Lakeridge Health – Kidney Patient and Family Peer Support Coffee Club, Oshawa

February

13 Kidney Connect Peer Support Group Meeting, Kitchener 20 Lakeridge Health – Kidney Patient and Family Peer Support Coffee Club, Oshawa

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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• Canadian based company • Specializes in year round haemodialysis services • Ensures high quality dialysis at Canadian standards

Visit the website for our new clinic in Calgary. www.getawaydialysis.com 1 (877) 517-6509 Advertisement

www.kidney.ca/ontario

Fall 2012 / Kidney Living /

19

LIVING WELL

Recognizing 10 years of partnership with the nephrology community, to support renal programs and patients.

Amgen Canada Inc. 6775 Financial Drive Mississauga, ON L5N 0A4

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/ Kidney Living / Fall 2012

Advertisement

www.kidney.ca/ontario

VOLUNTEERS LIVING WELL

Connect with someone who understands

BigStock Photo: 14470973

Caring for the Caregiver

C

aregivers are such an important source of support to family members or close friends during times when illness or chronic conditions arise. For many, caregiving is done in conjunction with many other responsibilities including working outside of the home and caring for other family members. It’s easy to feel overwhelmed with a multitude of responsibilities especially during the holiday season. It’s far too easy to become so engaged in caregiving that the caregiver’s needs are often forgotten.

Caregiving 101

1. Make time for yourself. Everyone deserves time for themselves. It’s important to establish boundaries and to designate “me-time.” Whether it is a walk, time at your favourite activity, or reading by the fireplace, making time for yourself will allow you to focus on your needs.

2. Connect with someone who knows how you feel. You’re not alone. There are support programs like the Kidney Connect Peer Support program that exist and are available not only to patients living with kidney disease, but their caregivers.

Call 1-866-390-7337 for more information on how to access this service.

3. Ask for help. It’s easy to become consumed by the needs of others. When people offer to help, speak up and take them up on the offer. Sometimes, people will want to help, but won’t know what to offer, so it is up to you to ask. You will be amazed at those who offer to pitch in to help; maybe it’s taking your loved one to a medical appointment or dialysis treatment, whatever the task, there is likely someone in your circle of support that can lend a helping hand.

4. Spend time with family and friends. Make an effort to stay emotionally connected with family and friends. Set aside time for socializing, even if it's just a walk with a friend, a game of cards, or a weekly outing for coffee. Whenever possible, make plans that get you out of the house. Maintaining a strong support system is one key to managing stress.

5. Pay attention to your own health. In caring for others, caregivers often forget about their own health. It’s important to ensure that you schedule your own medical check-ups, have an annual physical, get plenty of rest and eat regular meals.  www.kidney.ca/ontario

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

Fall 2012 / Kidney Living /

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COMMUNITY HIGHLIGHTS

Community Kidney Car Partner Supports Local Chapter t Kidney Car partner, American Iron & Metal, celebrated the opening of their new Ottawa facility with a generous gift to The Kidney Foundation of Canada, Eastern Ontario Chapter. 

L to R: Dave Cybulski, Kidney Car Coordinator; Bruce Hill, Senior Development Manager; Herb Black, AIM President; Walter Griesseier, General Manager; Paul Race, Parts Manager.

Biz X Beach Jam Participants Volley in Support of The Kidney Foundation u Participants and organizers at the sixth Annual Biz X Beach Jam Volleyball Tournament celebrated the event’s greatest success to date with 22 teams and over $17,000 raised in net revenue. 

This is the overall winning team of the Sixth Annual Biz X Beach Jam Volleyball Tournament. L to R: Sam Reed, Liam Murdock, Jennifer Mastronardi, Emily Cappussi, Darryl McGhee, Noah Vandendriessche pictured with Joe Bondy at right, sponsor of the $700 winning prize.

Kidney March Event was a Rewarding Experience

Judy Taylor and Kim Boyko

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/ Kidney Living / Fall 2012

t Ottawa resident Judy Taylor, along with her daughter Kim Boyko of Calgary, took part in the Southern Alberta Branch’s annual Kidney March. This event, now in its third year, was held in September with participants walking 100 km from Kananaskis into Calgary, over the three-day period. The mother-daughter team walked together to remember the life of their son and brother, David, who passed away 10 years ago from kidney disease. More than 200 walkers and crew members took part in the challenging but memorable weekend to raise funds and create awareness of kidney disease. Judy described the event as one of the highlights in her life, difficult but truly rewarding.  www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

Highlights Teeing Off in Support of The Kidney Foundation u Kelly Hale, owner of J.A.K.K. Tuesday's Sports Pub in Kingston organized a golf tournament in July at the Loyalist Golf Club. The event was a tremendous success with the proceeds being split between The Kidney Foundation and The Cancer Society. 

Ann LaBrash, Development Assistant with The Kidney Foundation’s Kingston Chapter accepts a cheque for $4,500 from Kelly.

A Sweet Ride t Austin May, at left, was off for a ride in a Porsche Carerra driven by Kidney Foundation of Canada, Eastern Ontario Chapter volunteer, Claudio Versolato. Six CKD patients and their families were given rides in exotic cars such as Ferraris and Lamborghinis on a warm day in June. Plans are afoot to stage this event again next year. 

Austin May in Porsche

Ian Hay Memorial Tournament a Resounding Success u The first annual Ian Hay Memorial Golf Tournament was held on August 17 at Savannah Golf Links in Cambridge. More than 100 golfers took part and over 30 more joined the tournament for dinner and our silent auction. The tournament was a huge success in memory of a great man who had a very positive outlook on life, even in the face of kidney disease.

By the end of the day we raised $9,889 and created a lasting memory, raising awareness about kidney disease and funds to support those living with the disease. “What struck me most was the positive energy at the evening awards dinner,” one golfer stated. “There was a buzz in the room beyond what I have experienced in other similar tournaments.” Thank you to everyone who attended, contributed and supported the event. A special thanks to the Hay family for organizing the event.  www.kidney.ca/ontario

L to R: Carly Snell, Mike Hay, Ryan Lynch and Luke Pinder.

Fall 2012 / Kidney Living /

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A Very Special Holiday Gift On March 29, 2012, The Kidney Foundation ‘painted the town blue’ at the Art Gallery of Ontario as we launched our nation-wide New Challenge Campaign. As part of this unique event, celebrities and local kidney heroes created one-of-a-kind paintings which we are now offering as limited edition prints (8 x 10 images, 2 inch white borders, without a frame). Only 120 copies of each print are now available (with the exception of 250 Alex Lifeson prints and 50 Anne Murray prints).

Special Promotion! $60 each or 2 prints for $100

Custom Sterling Silver Jewellery These custom-made sterling silver items are exclusive to The Kidney Foundation of Canada. We have available for purchase necklaces with a double kidney shape on a box chain, which is made in Italy and is sterling silver as well.

Necklaces are $229.

Lapel pins with a single kidney shape are $129.

www.kidney.ca/celebrityprints

www.kidney.ca/estore To place orders, contact Elisa Hope at 1.800.387.4474, ext. 4949.

Depending on location, delivery will take between 2-3 weeks. Taxes and shipping inside Canada are included. Please contact us if you require international shipping.

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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