Living
KIDNEY Spring 2018 Volume 11 • Number 1
www.kidney.ca/ontario
A PUBLICATION OF THE ONTARIO BRANCH
THE financial burden of kidney disease
contents
SPRING 2018
EDITORIAL/ADVOCACY 3 Editor’s Message: Kidney Failure comes at high financial cost for many Canadians 4 The High Cost of Kidney Disease 6 You Can Make a Difference 20 Community Highlights 23 Calendar of Events
LIFESTYLE/FOOD & NUTRITION 16 Shining a Light on the Dangers of Sun 18 Keep Cool 19 Curried Shrimp Salad Rolls and Mint Yogurt Dipping Sauce (Recipes)
10
PERSONAL STORY 7 Beyond the Physical Toll ~ Catherine 10 The Long Road ~ Edythe 13 A Gratitude Attitude ~ Suzana 14 Miracles Still Happen ~ Megan SERVICES AND SUPPORT/WORKING TOGETHER 8 A Helping Hand 11 Women, Kidney Disease and Pregnancy 15 Peer Support Volunteers Needed
13
Cover image: GraphicStock.com
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: communications@kidney.on.ca. Phone: 1-800-387-4474.
©2018 Kidney Living, the contents of which is subject to copyright, is published twice a year. Reproduction in whole or in part, in written, electronic or any other format, without prior written permission, is strictly prohibited. For more information, contact Trish Reynolds, Editor at treynolds@kidney.on.ca or 1-800-387-4474 Ext. 4981.
The appearance of advertising in Kidney Living does not imply an endorsement by The Kidney Foundation of Canada, nor guarantee the quality, effectiveness of any products or services.
Editing, design and printing by GEPM Group Inc. www.gepmgroup.com
2 / Kidney Living / Spring 2018
www.kidney.ca/ontario
16 www.kidney.ca/ontario
EDITORIAL
Kidney failure comes at high financial cost for many Canadians
A
New report shows inequities in financial support for dialysis patients
Visit www.kidney.ca/on/election to learn how you can raise your voice and support Canadians with kidney failure.
www.kidney.ca/ontario
report released by The Kidney Foundation of Canada shows that a significant proportion of Canadians undergoing dialysis treatment experience financial hardship as a result of the extra costs associated with kidney disease. Increased costs are mainly due to transportation to dialysis treatment and medication. For those of you on dialysis, the findings of the report are likely not a surprise. Until now, we have had anecdotal evidence: discussions from social workers and an increasing number of applications to our emergency short-term financial assistance program, but it was evident that further investigation was needed. The Kidney Foundation, in association with Dr. Scott Klarenbach, Professor in the Department of Medicine at the University of Alberta, conducted the Burden of Outof-Pocket Costs for Canadians with Kidney Failure survey in 2016 to obtain data that would provide evidence of the economic burden associated with dialysis. This report helps arm The Kidney Foundation, our volunteers and you to take action and make sure that our elected officials are informed of the financial issues affecting people on dialysis and their families. In Ontario, we are calling on our elected officials to address the financial burden of kidney failure: 1. Develop a Medical Transportation Assistance Program to subsidize transportation costs to attend dialysis treatments, where there is no access to available, accessible and affordable public transit systems. 2. Reduce the financial burden of accessing medications for people receiving dialysis treatments by eliminating the Trillium Drug Benefit Deductible. This issue of Kidney Living features stories and a powerful opinion piece written by volunteer Terry Young. We encourage you and your family to take action; talk to your local elected officials and share how dialysis has impacted you. Together we do have the power to make a difference. Trish Reynolds, Editor Communications Manager The Kidney Foundation of Canada Ontario Branch ď Ž Spring 2018 / Kidney Living /
3
ADVOCACY
StoryBlocks.com
The High Cost of Kidney Disease
M
The odds are stacked against kidney patients
by Terry Young
Terry Young is a former President of the Ontario Branch of The Kidney Foundation of Canada. He received a kidney transplant almost 45 years ago.
4 / Kidney Living / Spring 2018
ore than 10,000 Ontarians have end stage renal failure. For the majority, their only hope for survival is dialysis with a small lucky few able to go directly to kidney transplantation because they have found a donor. But while dialysis can sustain a life, it can also be extremely debilitating and comes with significant physical and emotional strain associated with living with a chronic and potentially fatal disease. Each hemodialysis treatment normally takes four to five hours, three times a week, where machines take the place of kidneys, removing poisons that have accumulated in the blood. To access these treatments, many patients have to travel to hospitals or dialysis centres, and in the case of rural residents, these treatment facilities can be far from home. At this point, there is no cure for kidney disease. Some patients, like me, are fortunate enough to have a kidney transplant, which can hold the promise of a better quality of life. I am one of the lucky ones. My three brothers were on dialysis but didn’t live long enough to benefit from transplantation like I have. For some dialysis patients, transplantation is www.kidney.ca/ontario
ADVOCACY
not an option given other medical conditions and for many, the shortage of donors can prolong their reliance on dialysis. A recent study undertaken by The Kidney Foundation of Canada and the Canadian Association of Nephrology Social Workers revealed another grim reality for dialysis patients‌ the significant financial hardships that dialysis creates as a result of transportation and medication costs and additional utility costs for those patients being dialyzed at home. While home dialysis provides a better quality of life, it also brings with it increased costs associated with additional hydro, water and garbage use that comes with dialysis treatments. The reported annual average out-of-pocket costs related to dialysis treatment ranged from $1,400 to $2,500 (depending on the type of dialysis treatone out of every five ment). This is subpatients surveyed stantial when you indicated that they have consider that 55 pergone without food, cent of respondents medicine or other basic reported an annual necessities as a result of household income of the extra costs associated less than $35,000 and with dialysis 23 percent reported an annual household income of less than $20,000. And while costs for those starting dialysis have gone up, this is compounded by a drop in income. Nearly 50 percent of people who responded to the survey indicated that their household income had decreased since starting dialysis, largely because of their inability to hold a full time job, with two-thirds of the respondents indicating it had decreased by 40 percent or more.
The odds are stacked against dialysis patients. The average life expectancy for those on dialysis is five to 10 years. Those odds can be reversed with better treatment, but the financial implications associated with dialysis can be a major impediment. It has reached a point where one out of every five patients surveyed indicated that they have gone without food, medicine or other basic necessities as a result of the extra costs associated with dialysis. At a time when their kidneys are failing them, the fairness of our healthcare system is also failing those afflicted with kidney disease. But the pending provincial and municipal elections offer hope for dialysis patients through the adoption of needed changes that can provide better care for those who suffer too much already. At the provincial level, The Kidney Foundation is asking the newly-elected government to establish a Medical Transportation Assistance Program to subsidize transportation costs for patients to get to these life-sustaining treatments in areas where there are no available and affordable public transit systems. To reduce the financial impact of needed medication, we are also calling on the newly-elected provincial government to eliminate the Trillium Drug Benefit deductible for dialysis patients. At the municipal level, officials need to implement reimbursement of additional hydro, water and waste costs that come with home dialysis. These relatively small changes can have a significant impact on improving the quality of life for those who desperately need our help. ď Ž
LET THEM HEAR YOU The Kidney Foundation of Canada – Ontario Branch wants to make sure that our elected representatives hear your voice. Share your story of how dialysis has impacted you and your family financially at:
elections@kidney.on.ca StoryBlocks.com
www.kidney.ca/ontario
Spring 2018 / Kidney Living /
5
ADVOCACY
You Can Make a Difference
E
Make your voice heard
by Trish Reynolds
lections provide an opportunity for us to engage with our local candidates and ensure that our leaders have a better understanding of the key issues impacting families who live with kidney disease. Kidney disease changes peoples’ lives forever. Dialysis is a life-sustaining treatment option and transplant is not a cure. This is the reality for one in 10 Canadians. Being on dialysis or having a kidney transplant can place significant financial challenges on patients and families related to loss of income and increased out-of-pocket treatment-related expenses. Treatment-related out-of-pocket costs can include: • Transportation to and from dialysis treatments, medical tests and procedures that may not be available at their local hospital. • Travel costs for home dialysis training. • Travel costs for patients and their caregivers who do not live within close proximity to the regional transplant centres for assessments, accommodations for transplant surgery as well as post-transplant follow-up appointments. • Increased water, hydro and garbage disposal fees for home dialysis. • Trillium Drug Plan deductibles. • Nutritional supplements/medications not otherwise covered. • Relocation from remote communities to access dialysis.
This is your chance to make your voice heard in the election process. By sharing your story, and how kidney disease impacts your life, or the lives of your loved ones, we can ensure that all candidates have a better understanding of the impact of kidney disease. Let’s make sure Reducing the Financial Burden of Kidney Disease is on the provincial government agenda. The Kidney Foundation is asking the newly-elected government to establish a Medical Transportation Assistance Program to subsidize transportation costs for patients to get to these life-sustaining treatments in areas where there are no available and affordable public transit systems. To reduce the financial impact of needed medication, we are also calling on the newlyelected provincial government to eliminate the Trillium Drug Benefit deductible for dialysis patients. Here’s a few ways you can help: • Pre-election, visit the candidates in your riding. • Share how kidney disease has affected your life. Send a letter to the candidates in your riding (sample letter is available at kidney.ca/on/election). • Write a letter to the editor of your local newspaper. • Attend all candidates’ meetings. • Talk to others about the burden of kidney disease and encourage them to show their support by participating in the abovementioned activities. • After the election, continue to raise your voice with your local elected officials. Bring forward the issues impacting Canadians living with kidney disease. Resources available in our election tool kit at www.kidney.ca/on/election Don’t forget to take time to cast your ballot on Thursday, June 7, 2018.
6 / Kidney Living / Spring 2018
www.kidney.ca/ontario
PERSONAL STORY
Beyond the Physical Toll The financial stress of kidney disease
by Heidi Westfield
Catherine* knows she should book an appointment. It has been at least six or seven months, she figures, since her last haircut. It never used to be like this. Before she was diagnosed with kidney disease, the Toronto-area woman didn’t think twice about haircuts, movies or toys for her daughter. Now it is hard for her and her husband to find the money for these extras.
*Not her real name. www.kidney.ca/ontario
“T
iStock.com
he medications are extremely costly and even if you are partially covered for it, you end up paying some of the expenses out of pocket,” she says. “Before, if my daughter wanted a $20 Barbie I wouldn’t think twice. Now, everything adds up. You pay your bills, you pay for your food, but you have to cut down on things that aren’t necessary.” Catherine was diagnosed with glomerulonephritis (GN) three years ago. Doctors are working to stabilize her condition and keep her kidneys working. She takes a number of prescription drugs to control high blood pressure, protein levels and swelling. She also takes over-the-counter dietary supplements, which are not covered by health plans. The monthly costs of these medications are an added burden for a family already trying to manage the effects of a serious health condition. As a young professional in her 30s, kidney disease was not on the radar. Catherine had felt vague symptoms for some time—fatigue and occasional nausea—but thought nothing of it. About three years ago, doctors noticed protein in her urine. Soon afterwards, with a demanding full-time job and a young daughter, her life was turned upside down by a disease she had never heard of before. “With kidney disease, it is hard because you don’t look sick, but inside, you just feel like you are going to fall apart. It has changed my life a lot. The hardest is the unpredictability. One day you can wake up and feel fine, and the next day you can barely get out of bed.” Along with the financial and physical strains, came a new set of professional challenges. Catherine is no longer as energetic and reliable at work as she used to be. She tires more easily and needs to make frequent visits to the washroom. She tries to stay productive, but the side effects of the medications are physically and mentally taxing. “People with kidney disease are fighters. We try so hard to maintain a normal life, but it is not a disease that is easy to live with,” she says. Catherine would like to see workplaces become more supportive of employees living with kidney disease. She also hopes that in the future, Canadians will come to better understand this complex health condition that can have such a devastating impact on so many lives. Spring 2018 / Kidney Living /
7
SERVICES AND SUPPORT
A Helping Hand Reimbursement programs for living kidney donors and home hemodialysis patients
Photos.com
by Trish Reynolds
A
Home Hemodialysis Grant new grant is now available for people with chronic kidney disease in Ontario who manage their hemodialysis treatment in their own homes. The Ontario Renal Network announced the launch of the The Home Hemodialysis Utility Grant in February to support patients’ treatment at home, by helping to offset the expenses for the increased water and electricity costs associated with home hemodialysis treatments. Grant payments are customized for each patient to offset each person’s individual utility costs. Each payment amount is calculated based on a number of factors, including average electricity rates across the province, each patient’s municipal water rate, the proportion of time the patient was on HHD during the reimbursement period, calculated electricity and water usage amounts for the hemodialysis equipment used in their home, and each patient’s treatment schedule as prescribed by their nephrologist. The Home Hemodialysis Utility Grant, created by the Ontario Renal Network in partnership with Regional Renal Programs, is funded by the Ministry of Health and Long-Term Care. If you are on home hemodialysis or considering home hemodialysis, the first step is to contact the Home Dialysis Coordinator in your Regional Renal Program. For more information: http://www.renalnetwork.on.ca/info_for_ patients/dialysis/HHD_utility_grant
8 / Kidney Living / Spring 2018
www.kidney.ca/ontario
SERVICES AND SUPPORT
Program for Reimbursing Expenses of Living Organ Donors (PRELOD) Living donors made possible 30 percent of kidney transplants performed in Ontario in 2017. In an effort to minimize the potential financial burdens associated with the living donation process, the Government of Ontario established the Program for Reimbursing Expenses of Living Organ Donors (PRELOD). PRELOD reimburses eligible reasonable out-of-pocket expenses for costs incurred by potential and actual donors for travel, parking, meals, accommodation and loss of income. During your preliminary appointment, a transplant assessment coordinator will talk to you about the PRELOD reimbursement program and how to apply for it. PRELOD may pay for potential expenses that happen during the evaluation process. PRELOD is managed by the Trillium Gift of Life Network. Applicants residing in Northern Ontario (including Algoma, Cochrane, Kenora, Manitoulin, Nipissing, Parry Sound, Rainy River, Sudbury, Timiskaming or Thunder Bay) should apply to the Northern Health Travel Grant (NHTG) prior to submitting an application to PRELOD.
The Kidney Foundation of Canada Last Resort Short-term Financial Assistance Short term and emergency financial assistance may be available to residents of Canada to cover medical and other expenses associated with kidney disease and its treatment. This short term, limited financial support can be offered as a last resort or a bridge support when all other sources of funding have been exhausted. Applications for short-term financial assistance are made through renal social workers at community units, hospital renal programs or kidney care clinics. The applicant must meet eligibility requirements. Travel Loans Patients never get a vacation from having to attend dialysis. Even when travelling on vacation or business, people living with kidney disease cannot miss attending their regular three-times-a-week dialysis treatments. The Travel Loan Program is designed to assist hemodialysis patients with the upfront costs of out-of-country dialysis treatments. The interest-free loans are repaid upon the patient’s return and reimbursement by OHIP. Applications are made through your renal social worker. For information, please contact our Programs Team 1.800.387.4474.
Resources: Trillium Gift of Life Network: https://www. giftoflife.on.ca/en/transplant.htm Northern Health Travel Grant: http://www. health.gov.on.ca/en/public/publications/ ohip/northern.aspx ď Ž
Stay Connected... kidney.ca/ontario kidney.ca/on/enews
Join the Conversation www.kidney.ca/ontario
@kidneyontario Spring 2018 / Kidney Living /
9
PERSONAL STORY
The Long Road Treatment is not always close to home by Heidi Westfield
They were spending a lot of money on gas, but the most daunting expense was a new car.
10 / Kidney Living / Spring 2018
E
GraphicStock.com
dythe is grateful to have access to dialysis treatments in Alliston, Ontario, even though her spot at the Stevenson Memorial Hospital is only temporary. The dialysis unit is just a short distance from her home, and with the taxi ride subsidized, it costs just three dollars each way. It is much more convenient and affordable than the hour-long drive to Barrie that she used to do three times a week. That trip was an added financial burden on her family, that also put a strain on their jobs. “It was a real stress. My daughter had to take time off work to drive me up to Barrie. She is a daycare supervisor and needs to be at her job,” Edythe said. “My son-in-law would often leave work early to pick me up.” Edythe, 78, is retired and lives on a modest fixed income. Last October, her kidney function fell to dangerous levels and she became very sick. Doctors rushed her to a hospital in Barrie where she was stabilized and started hemodialysis treatments. After she was released from hospital, Edythe hoped to continue dialysis treatments near her home in Alliston. However, there was no dialysis station for her in her community. Instead, she was registered at the Royal Victoria Health Centre in Barrie. Edythe could not drive herself that distance, so her daughter and sonin-law stepped in to help. Beginning last October, they travelled about 250 kilometres a week to get Edythe to and from her treatments. They were spending a lot of money on gas, but the most daunting expense was a new car. Her daughter felt it was necessary, as she was worried about the safety of her older pick-up truck on the highway. “She was holding off on getting a new car but said, ‘I can’t go on like this. If we break down on the side of the road, then where are we going to be?’” Edythe recalls. “So she went out and got a new car. Otherwise she would have held off and tried to make do with the other one.” The trips to Barrie continued until the beginning of March, when a temporary dialysis station was found closer to home. Being able to receive dialysis treatments in her community has lessened the burden on Edythe and her family. While she is very happy with the quality of care she is receiving, Edythe would like to see more support for kidney patients who need to travel for treatments. www.kidney.ca/ontario
WORKING TOGETHER
StoryBlocks.com
Women, Kidney Disease and Pregnancy A Q&A with Dr. Michelle Hladunewich by Heidi Westfield
D
r. Michelle Hladunewich is the Division Director, nephrology and obstetrical medicine, at Sunnybrook Health Sciences Centre in Toronto. She is also the Medical Lead, glomerulonephritis and specialty clinics, with the Ontario Renal Network. Dr. Hladunewich has helped hundreds of women with kidney disease have children despite the risks.
Why did you choose to become a nephrologist? Why I fell in love with nephrology, why I am a nephrologist, is because it is probably the only specialty where you can build the patient relationships that you have. In nephrology, you often see patients for many years, and get to know them personally. I really like that. I like knowing not just about my patient’s medical condition, but also about their families, and www.kidney.ca/ontario
Spring 2018 / Kidney Living /
11
WORKING TOGETHER
their aspirations. Nephrology is one of the few specialties that really affords you such a close relationship with your patients.
How did you come to specialize in helping women with kidney disease have children? I am a big believer in hope. This disease is chronic, and you need to try to build the best life you can with it. When I first started out in nephrology, it was a very male specialty. Women with kidney disease were often told, “It is not a good idea to have a child.” That is not a wrong statement, but that kind of advice is not particularly helpful to women. The answer doesn’t need to be no; the answer can also be when, and how. Nephrologists should outline the potential risks and empower women to make their own decisions on whether to move forward with a pregnancy.
What are the challenges women with kidney disease face trying to have a child? There are challenges at every life stage when it comes to making decisions on reproductive health. Even something as simple as a birth control pill can hasten the progression of the underlying disease. Also, some of the renal drugs can impact fertility. There are some women who come to my clinic with very advanced kidney disease. They have to decide whether to try to have a baby right away, on dialysis, or after a kidney transplant. With all of those choices, there are many unknowns.
The answer doesn’t need to be no; the answer can also be when, and how.
Why is it important to bring more attention to this issue? It is really critical. Women need to know how to advocate for themselves. A recent survey found that less than 20 percent of nephrologists in Ontario were “very comfortable” with pre-pregnancy and pregnancy counselling of women with kidney disease. Most were just “somewhat comfortable.” Nephrologists may not bring up discussions around reproductive issues with patients. Women need to be aware of the risks and issues around pregnancy, so they can make informed choices for themselves.
What kind of advances have we seen in recent years? I think there is much more awareness in the nephrology community that women with kidney disease can have successful pregnancies. When babies are born pre-term, they are now doing better due to advances in neonatal care. There is also a better understanding of pre-eclampsia, which is one of the most significant diseases that affect women with CKD during pregnancy. Probably the biggest change is for women on dialysis. Physicians are now realizing that you can have a baby on dialysis. It is a really difficult road, but more women are able to do that. It also gives women with more advanced CKD—the ones most at risk of complete kidney failure—the option of continuing their pregnancy on dialysis.
What do you find most worthwhile about your work? My patients. Having my patients come into the clinic with their children is the best feeling in the world. Seeing moms with kidney disease deliver healthy babies—that can keep you going forever. Dr. Michelle Hladunewich
12 / Kidney Living / Spring 2018
www.kidney.ca/ontario
PERSONAL STORY
A Gratitude Attitude Exercise helps Suzana stay healthy and maintain a positive attitude
by Heidi Westfield
www.kidney.ca/ontario
S
uzana likes to stay active. She works out five days a week with spin classes, high intensity fitness sessions, weights and yoga. As long as her health is stable, nothing will stop her from getting to the gym. Not the weather, not her dialysis machine, nor the catheter in her neck. The 48-year-old Barrie resident knows nutrition and exercise are important to stay healthy, and feel good about the way she looks. “It is something I have done all my life,” Suzana says, on her exercise regime. “It is good for the body, good for the soul, and it keeps you busy. I am getting older, and I want to stay healthy to avoid complications down the road, hopefully, if I get a transplant.” Suzana lost her kidney function as a young girl, after a severe bout of strep throat. She has undergone two kidney transplants, and is now on dialysis. She has tried dialyzing in different ways—hospital hemodialysis during the day, peritoneal dialysis at home. In her experience, she has found that home hemodialysis, seven nights a week, works best. The machine she hooks herself up to every night gives her the
energy to move forward with her day. “There are times when I have a love-hate relationship with the machine,” Suzana acknowledges. “But I know what the machine does. It gives me strength, it gives me tomorrow, it gives me hope. Just because the machine is there, it doesn’t mean your life has to stop.” There were times over the years when Suzana’s health was not so stable. She remembers days on dialysis when the slightest movement was taxing, and getting out of bed impossible. At one point, she was so weak she had trouble holding a pen properly. Despite these setbacks, she has soldiered on and found a way to regain her health and motivation. She advises other kidney patients not to give up. It is important to learn about different medications and options available, and push for the best healthcare solutions possible. “If I can do it, anybody can do it. Life is so precious. When I wake up in the morning and I see snow, rain, sleet, sunrise and sunsets, I am happy. My eyes are making memories with these beautiful pictures. I don’t think of myself as sick.” Spring 2018 / Kidney Living /
13
PERSONAL STORY
Mark and Megan with Elijah, Leeland and Aliana
Miracles Still Happen
“I
Kidney disease, pregnancy and the strong bonds of family
by Natalie Richard
14 / Kidney Living / Spring 2018
never knew I was sick until I got pregnant. That’s when I found out that I had to go on dialysis.” Born with one kidney, Meghan always knew she had to take special care of herself. Often referred to as “the silent disease,” it was not until she became pregnant that Meghan realized her sole kidney had failed. For Meghan and her partner, Mark, the news was bittersweet as both the kidney failure and the pregnancy came as a surprise. “Growing up, I knew I only had one ovary and one kidney and I didn’t think I could get pregnant. Once, my one ovary had a cyst and a year after it was removed, I unexpectedly got pregnant.” While not impossible for women with kidney disease to give birth, the process is considered a high risk pregnancy. For Meghan, it meant eight hours of dialysis six days a week during her pregnancy. At the time, she and Mark were living in Toronto. With help from the medical team at Sunnybrook Hospital, and the renal team at St. Joseph’s Hospital in Hamilton, Meghan dedicated herself to the grueling dialysis schedule which she hoped would allow her family to grow. When she was diagnosed, Meghan recalls a nurse who, concerned about the strain of the increased dialysis treatments and the risk to Meghan’s unborn child, encouraged her to consider an abortion. www.kidney.ca/ontario
PERSONAL STORY
“I said, well, if it’s going to happen, it’s going to happen. If I’m meant to have a child, if this is meant to be, I am going to do anything and everything I can to make sure I have a healthy, happy baby. The biggest challenge was being in the chair for that amount of time… it was hard, especially at first. But the thing that got me through was knowing it was all for my son.” Supported by her family and medical team, Meghan began dialysis four months into her pregnancy. She continued to work as a waitress during this time, although she felt her treatments were pretty much a full time job. On January 18, 2015, Meghan gave birth to the happy and healthy baby boy she had fought for, Leeland Allen Kilner Code. At five pounds, 18 ounces, Leeland was Meghan’s tiny miracle. “As soon as Leeland was in my arms, I knew it was all worth it. Every moment was worth it. He’s everything. He’s the love of my life.” Today, Meghan is living in Sarnia with Leeland, Mark, and the two newest additions to their family. After the difficulties of her pregnancy with Leeland, Meghan and Mark made the difficult decision not to try for another child. When Meghan’s sister, Amanda, was unable to donate Meghan a kidney, she decided to give Meghan a different chance at growing her family. Through surrogacy, Meghan and Mark welcomed twins Aliana and Elijah into their lives on May 3, 2017. “Pregnancy and dialysis is long. Some days you want to give up. It’s a long journey, but it’s worth it at the end. If the doctors are there and on board and are willing to help you with your progress, then do it.” Joining with her kidney community also helped as Meghan began her kidney journey. While in Toronto, Meghan was an active member for the Team Transplant dragon boat team and she remains an advocate for organ and tissue donation awareness. “I’m on the organ transplant wait list and hoping that it’s soon. More people registering to be donors would help a lot of us out.” Register your intentions to be an organ donor online today at: www.beadonor.ca/ kidneyfoundationofcanada
iStock.com
T
Peer Support Volunteers Needed he Kidney Foundation of Canada continues to be a leader in developing, training and mentoring peer support volunteers across the province. Peer support is about understanding another person’s situation empathetically through the shared experiences of emotional and practical experiences. The shared notion of self-identification through storytelling, and a sense of connection with another patient, is based on a mutual understanding of their shared lived experiences. Another wonderful outcome for those receiving peer support is that they will often want to give back and support new patients by becoming volunteers themselves. We are looking for passionate people touched by kidney disease, including those living with renal failure, family members, caregivers and living donors who speak an assortment of languages, such as Tamil, Urdu, Punjabi, Hindi, Italian, Vietnamese, Polish, Portuguese, French, Spanish and other dialects to join our roster of Peer Support volunteers. Peer support volunteers have a desire to help others through sharing their experiences. Volunteers do not offer medical advice. This is your opportunity to touch someone’s life and make a difference. Interested individuals will need to complete an application form and interview process. Training is provided through The Kidney Foundation of Canada. We are grateful for the support of our Kidney Connect volunteers. It is through their support that we are able to provide this vital service to people and their families living with kidney disease. Please contact the Kidney Connect Peer Support line at 1-866-390PEER (7337) or email programs@kidney.on.ca to learn more about peer support or how you can become a peer support volunteer and give back to those within your community.
www.kidney.ca/ontario
Spring 2018 / Kidney Living /
15
LIFESTYLE
Shining a Light on the Dangers of Sun The link between kidney transplants and skin cancer
BigStockPhotos.com
by Natalie Richard q Dr. An-Wen Chan
O
riginally from Calgary, Dr. An-Wen Chan is now an Ontariobased researcher working with transplant patients who are living with skin cancer. After completing his doctoral degree at the University of Oxford, Dr. Chan focused his research at both the University of Toronto and at the Mayo Clinic in dermatology and micrographic skin cancer surgery. During his time with the Mayo Clinic, Dr. Chan became involved with a transplant dermatology clinic specifically for kidney transplant recipients. “We cared for kidney transplant recipients and the chronic complications they were experiencing because of long-term use of anti-rejection medications,” Dr. Chan recalls. “It really piqued my interest, not only from a clinical patient perspective, but also from the uncertainties of prevention and what we could do to ensure the long term health of these patients.” Dr. Chan’s research into the relationship between transplant patients and skin cancer led to a multi-year research project across Ontario. In collaboration with his colleagues in the transplant nephrology community, Dr. Chan found that skin cancer after transplantation is 10 times more common than in the general population. Because of their anti-rejection medications, transplant recipients are more susceptible to ultraviolet radiation damage from the sun. For transplant recipients, the major risk factors for developing skin cancer are having fair skin or sensitivity to sunburn, older age, and a history of skin cancer or extensive sun exposure. Confirming these risk factors and establishing that skin cancer afflicts “one-fifth of patients as a long-term side effect of anti-rejection
16 / Kidney Living / Spring 2018
www.kidney.ca/ontario
LIFESTYLE
medications,” allowed Dr. Chan to take the next step towards impacting the lives of those living with a transplanted organ. Now, Dr. Chan is putting together the framework for enrolling patients in a clinical study to test whether the vitamin nicotinamide can help to prevent skin cancer after kidney transplant. “There is good evidence in the general population that this vitamin helps prevent skin cancer. And the next obvious question is: does this vitamin also work in the highest risk patients, such as kidney transplant recipients, who already take multiple medications? We want to see if it is both effective and safe. If it is, it is an ideal intervention in terms of being low cost and having few side effects. It could really reduce the risk of skin disease in the transplant population.” People often ask why research advances take so long, but it is the dedication to precision and safety during clinical trials that make research projects, such as Dr. Chan’s, a lengthy process. Collaborators, both locally and provincially, pharmacists and study sites are all pulled into the planning to prevent bias in the study and to protect patients. With all of the time and work involved, research grants are an essential part of the
research process. In 2017, Dr. Chan received a Biomedical Research Grant from The Kidney Foundation to support his research on the possibility of the vitamin reducing skin cancer risk in transplant patients. “I was ecstatic [to receive the grant] and learn that we could finally move forward with this potentially groundbreaking study. We had been planning this with background research for several years and this is the last stage of determining whether this vitamin could be safe and effective for transplant recipients,” says Dr. Chan. “Contributions from the Foundation are greatly valued because it really allows us to engage in important work. Donations from private donors to organizations like The Kidney Foundation are invaluable and can help those suffering from kidney disease.” While working on his latest research project, Dr. Chan continues to work directly with patients at the Toronto General Hospital, running a transplant dermatology clinic dedicated to managing skin problems in transplant recipients. Dr. Chan encourages Canadians, living with or without a transplant, to practice safe sun care.
Ontario Branch
1599 Hurontario St., Ste. 201 Mississauga, ON L5G 4S1 1-800-387-4474 • 905-278-3003 kidney@kidney.on.ca
African-Caribbean Kidney Association 1-800-387-4474 Ext. 4140 acka@kidney.on.ca Brampton
1-800-387-4474 ext.4120
Brant County
1-800-387-4474 ext. 4130
Central Ontario
1-800-387-4474/905-278-3003 dpiotrowski@kidney.on.ca
Chinese Renal Association 1-800-387-4474 Ext. 4977 shukyu.fong@kidney.on.ca Durham Region
1-800-387-4474 ext. 4962
Eastern Ontario
613-724-9953/1-800-724-9953 mforster@kidney.on.ca
Hamilton & District
1-800-387-4474 Ext. 4969 jbertoia@kidney.on.ca
Kingston
613-542-2121 mforster@kidney.on.ca
London & District 519-850-5362 rramzanali@kidney.on.ca Niagara & District
1-800-387-4474 Ext. 4969 jbertoia@kidney.on.ca
North Bay
1-800-387-4474 Ext. 4110
Northern Superior 807-624-2680 mharms@kidney.on.ca
Be Sun Safe! (Tips for sun care protection)
Cover up with hats and sunglasses Apply sunscreen SPF 40 or higher in areas not covered by clothing Stick to the shade
www.kidney.ca/ontario
Avoid mid-day sun (strongest between 10AM and 4PM) Practice safe sun care year round, even when it’s not sunny
Sarnia-Lambton 519-344-3462 ehayter@kidney.on.ca Sault Ste. Marie 705-949-0400 tmcmillan@kidney.on.ca Timmins-Porcupine 705-235-3233 tpkidney@ntl.sympatico.ca Waterloo – Wellington & District 1-800-387-4474 Ext. 4862 eturney@kidney.on.ca Windsor & District 519-977-9211 emuscat@kidney.on.ca Spring 2018 / Kidney Living /
17
FOOD AND AND NUTRITION NUTRITION FOOD
Keep Cool Beating the Heat on Fluid Restriction
by June Martin, RD
StoryBlocks.com
18 / Kidney Living / Spring 2018
H
ot summer days are wonderful but can be torture for people who must restrict their fluids. This generally applies only to dialysis patients or those with congestive heart failure, who have to try to manage both their fluids and the heat. If you don’t need to follow a fluid restriction, make sure you get enough fluids in the summer heat to keep your kidneys working well. Extra fluid on your body can often be seen as swelling (edema), increased blood pressure, weight gain or shortness of breath and can be quite dangerous. If in doubt see your doctor. Check with your dietitian to see how much fluid you should aim for every day. As a general rule of thumb you should gain no more than 2–2.5 kg (4.4–5.5 lbs) of fluid between hemodialysis treatments. Remember, every 500 ml (2 cups) of fluid not used by the body equals a half kilogram (1 lb) in weight gain. Fluid allowance may change depending on your urine output. In general, you may drink 1 litre (4 cups) of fluid per day plus an amount equal to your urine output. If a food is liquid at room temperature, it is considered a fluid. Fluids include coffee, tea, popsicles, sherbet, ice cream, jello, soup and ice. To Control Fluid Intake: • Drink only to satisfy thirst. • Keep cool. Stay out of the sun and try to find air- conditioned spaces. • Choose cool, moist foods at meals. • If you avoid high-sodium foods, you will be less thirsty. • Don’t drink from habit or to be social. • Try to get the most nutrition from your allowed liquids. Give up coffee, tea, soft drinks and alcoholic beverages before milk, soups, juices and other nutritious foods. • Try having allowed fruits and vegetables ice cold between meals. Frozen grapes or raspberries can be a satisfying way to quench thirst. • Try sliced lemon wedges to moisten a dry mouth. • Use sour hard candies and chewing gum to moisten mouth. • Rinse your mouth with water, but don’t swallow it. • Weigh morning and evening and adjust your liquid intake so that you have a fluid weight gain of about 1 kg/day (2.2 lbs/day). • Most people find ice more satisfying than the same amount of water. Try putting lemon juice in ice cubes; you’ll use fewer. Use about half a lemon per tray of water. Remember to include ice in your daily fluid allowance. • Use small cups and glasses for beverages and other liquids. • Freeze allowed fruit juices in ice cube trays to reduce amounts taken. • When thirsty, try eating something like bread and margarine with jelly before taking liquids. Often the sense of thirst is really due to having a dry mouth. • If you have diabetes, high blood sugars will increase your thirst. Having good control of your diabetes will help to control thirst. • Speak to your pharmacist about trying an oral rehydration solution (treatment for dry mouth). • Measure your daily fluid allowance into a jug in the morning. Each time you swallow any fluids, pour out an equal amount of water from the jug. When the jug is empty, you have consumed your fluid allowance for the day. www.kidney.ca/ontario www.kidney.ca/ontario
T
FOOD AND NUTRITION
ired of the usual lunch fare? These cool, refreshing salad rolls are an interesting alternative to sandwiches. Look for the rice paper in the Asian section of your grocery store.
p hrim S d ie Curr
lls d Ro a l a S
oll: ste Per R mp r y pa ri 4 sh mild cur routs p 1 tsp bean s ) o ak p aste u e o l. S e l ¼ c ch slic s tro (to t o c o n a tow et 2 pe asil, cila asid aper on with t b e i s . p er th a e aste p ap rice es , c rr y p r. Place ine rice ach slic e u l e t t u ap e r c e L e n i t . p e a p e , s rv p w ts ur rice shrim n warm e moist n sprou rely and é t a u i h t e cu Sa er e of tro, b oll se p ap rice sorb som sil, cilan ttuce. R a . to ab p, thai b de of le g sauce a n i m n i p r o p h i iff s a ch yogur t d an d nt i m w i th
auce S g n i Dipp t r u Yog Mint
rt he d yogu nt, blanc n i a l . mi pp rolls ¼ cu ch fresh s ala d n h t u i w ½ b h o n ey er ve p nd s a ¼ ts milk r e s p nd Cairn 1 tbs ss in ble eslie L e f c e o Pr y Ch
db
elope
dev ecipe
R
BigStockPhotos.com
Information and tools to help you manage your renal diet.
KIDNEYCOMMUNITYKITCHEN.CA www.kidney.ca/ontario
Spring 2018 / Kidney Living /
19
COMMUNITY HIGHLIGHTS
community highlights t Italian Night 34 Years Strong This year, the Ottawa community celebrated the 34th annual Serrata Italiana Night. The annual fundraising gala supports kidney research for the future and gathers Ottawa’s kidney community for a delightful night. This year’s theme, Night at the Opera, was a hit for guests at Sala San Marco Banquet Centre. Many thanks to the volunteers who make this event, in memory of Agostino Monteduro, a continued success. q Pastalicious!
The Sarnia Lambton Chapter rebranded their Pasta Fest event this year to Pastalicious. A new venue, new branding and a very engaged community helped to make this event a success, raising more than $9,000.
20 / Kidney Living / Spring 2018
www.kidney.ca/ontario
COMMUNITY HIGHLIGHTS
World Kidney Day Shines a Light on Women’s Experience with Kidney Disease This year, World Kidney Day fell on the same date as International Women’s Day, offering a unique opportunity for us to focus on women’s kidney health. Educational displays at various locations across the province helped to provide greater awareness of kidney disease. q In Toronto, The Kidney Foundation hosted SALUD! Sip. Savour. Enjoy! at Artscape Wychwood Barns. Dr. Michelle Hladunewich shared information on pregnancy and kidney disease, and Zohara shared her personal story with the guests. u In Windsor, four women at various stages in their kidney disease journey pose with nephrologist Dr. Amit Bagga. L to R: Mary Diemer, Ann-Marie Hall, Dr. Amit Bagga, Rosalina Guiterrez and Darbara Hebert.
p Celebrating the Magic of the
Holidays The Chinese Renal Association hosted a Holiday Party for patients and their families to join together to celebrate the magic of the season. Magician, Mr. Godwin Yip, preformed a magic show, delighting the guests.
t Fun Raising Day in Durham The Durham Region Chapter kicked off the year with a Fundraising Luncheon on February 10 in Pickering raising over $4,700. Volunteers Marlene Marco, Claudine Pereira, Sue Searle, Hannah Stojanovski (event organizer) and Daniel Zanzonico paused for a photo.
www.kidney.ca/ontario
Spring 2018 / Kidney Living /
21
COMMUNITY HIGHLIGHTS u Going Green Landmarks across the City of London went green to promote organ donation awareness during National Organ and Tissue Donation Awareness Week. Top: London City Hall Centre: London Life Building Bottom: J. Allyn Taylor Building
The Kidney Foundation of Canada, Ontario Branch 2017 - 2018 Board of Directors Craig Kerr, President Richard Bernreiter Alan Hui Moe Jiwan Sandy Kauenhofen Craig Lindsay Michael Mastrionardi Dr. Norm Muirhead Greg Robbins Mary-Pat Shaw Sonya Solman Susan Tkachuk Dr. Gordon Wong Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003
22 / Kidney Living / Spring 2018
www.kidney.ca/ontario
COMMUNITY HIGHLIGHTS
For details about events in your community, call The Kidney Foundation of Canada Chapter nearest to you, or visit www.kidney.ca/ontario.
May 2018
August 2018
October 2018
24
7
9
24
28
Stand Up for the Cure Comedy Night Celebrity Men in a Fashion Event, Sarnia Kidney Connect Support Group, Mississauga
June 2018 5
13 19 20 23 26
Kidney Connect Peer Support Group, Kitchener Kidney Connect Support Group, Mississauga Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Coffee Club, Oshawa Kidney Golf Tournament, Hamilton Kidney Connect Support Group, Mississauga
July 2018 4 6 10 10 18 18 19 23 29
Kidney Connect Support Group, Scarborough Christine LaBrasceur Memorial Golf Tournament, Sarnia Kidney Connect Peer Support Group, Kitchener Kidney Connect Peer Support Group, St. Catharines Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Coffee Club, Oshawa Go 4 the Green Golf Tournament, London Kidney Connect Support Group, Mississauga Greenfield Golf Tournament, Markham
www.kidney.ca/ontario
1
8 15 28
Kidney Connect Support Group, Scarborough Kidney Connect Peer Support Group, St. Catharines Kidney Connect Peer Support Group, Kitchener Kidney Connect Coffee Club, Oshawa Kidney Connect Support Group, Mississauga
September 2018
Kidney Walks will take place in communities across Ontario. Dates and locations are posted at www. kidneywalk.ca 4 Kidney Connect Peer Support Group, St. Catharines 5 Kidney Connect Support Group, Scarborough 11 Kidney Connect Peer Support Group, Kitchener 16 Taste of Summer, London 19 Kidney Connect Peer Support Group, Thunder Bay 19 Kidney Connect Coffee Club, Oshawa 24 Kidney Connect Support Group, Mississauga
3
10 16 17 23
Kidney Connect Support Group, Scarborough Kidney Connect Peer Support Group, St. Catharines Kidney Connect Peer Support Group, Kitchener Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Coffee Club, Oshawa Kidney Connect Support Group, Mississauga
November 2018 7 7 13 13 21 21 26
A Time to Shine Gala, Honouring Dr. Daniel Cattran, Toronto Kidney Connect Support Group, Scarborough Kidney Connect Peer Support Group, Kitchener Kidney Connect Peer Support Group, St. Catharines Kidney Connect Peer Support Group, Thunder Bay Kidney Connect Coffee Club, Oshawa Kidney Connect Support Group, Mississauga
E-newsletter Get Kidney Foundation news direct to your inbox by registering for our free monthly e-newsletter. Receive the latest news and information aimed at people living with kidney disease, their families and supporters. Find out how the Foundation can help you, what you can do to support kidney patients, and what’s happening with kidney research in Canada. Register today—kidney.ca/ontario/e-news. Spring 2018 / Kidney Living /
23
Every kilometre counts in the fight against kidney disease. Join together this September in your community.
.CA
REGISTER TODAY
MEDIA PARTNER
NATIONAL PARTNER
Canadian Publications Mail Agreement # 40011479
Postmaster: Please return undeliverable Canadian addresses to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1