The Kidney Community Newsletter - Fall 2019

FALL 2019

The Kidney Foundation of Canada – Quebec Branch

newsletter

KIDNEY CAR

Kidney Car comes to Baie-Comeau page 13

PATIENT SERVICES

Oral health and people with chronic kidney failure

SPECIAL REPORT: KIDNEY DISEASE RESEARCH Research in figures and Portrait of a KFoC-funded researcher page 7

page 15

TESTIMONY

2019 World Transplant Games page 17

PRESIDENT'S MESSAGE The personal information you have provided is used only to send you this newsletter. If you no longer wish to receive it, please e-mail us at infoquebec@kidney.ca or call us at 514-938-4515.

Dear readers: Help enrich our newsletter by sharing your experiences with kidney disease or transplants! Please send a text of up to 300 words, along with a high-resolution photo, to infoquebec@kidney.ca.

CONTACT US: The Kidney Foundation of Canada – Quebec Branch 2300 René-Lévesque Blvd West, Montreal, QC H3H 2R5 TELEPHONE 514-938-4515 or 1-800-565-4515 FAX 514-938-4757 E-MAIL infoquebec@kidney.ca Circulation : 10,000 copies The newsletter is published three times a year by the Quebec Branch of The Kidney Foundation of Canada. Distributed in English and French to all people suffering from kidney failure, these publications provide valuable information on the Foundation’s services and activities, including the latest news about kidney disease and organ donation.

The opinions expressed in this newsletter are not necessarily those of the Quebec Branch of The Kidney Foundation of Canada, its directors, employees or members.

Moving? Write us at: infoquebec@kidney.ca.

Articles may be reproduced provided that proper credit is given.

Last May, the members of the Quebec Branch of The Kidney Foundation of Canada did me the honour of asking me to represent them on the branch’s Board of Directors for 2019-2020.

It is a true pleasure to be able to give my time to an organization run by volunteers and employees who are so passionate about and dedicated to raising awareness about such a worthy cause, kidney health.

Year after year, hundreds of thousands of our peers, family members, friends and coworkers are affected directly or indirectly by kidney disease.

MY MAIN GOAL IS TO SEE TO THE SUCCESS OF THREE AREAS OF FOCUS THAT I CONSIDER VITAL TO OUR MISSION: 1 Increasing member and volunteer numbers by continuing to promote the status of member-friends and by developing tools that encourage volunteer action

Throughout its history, the Foundation has demonstrated its unwavering and continued relevance within Quebec’s health sector. However, much work remains to be done and we must continue raising awareness among all Quebecers about the paramount importance of organ donation, whether involving living or deceased donors.

Too many people in this country need a kidney transplant and we all know just how much organ donation can drastically change these people’s lives. That is why I have made this third focus my main battleground for the coming year.

I look forward to continuing the remarkable work of outgoing President Sylvie Charbonneau and to further advancing the cause of kidney health in Quebec.

Everyone should have the right to a quality of life that enables them to live life to the fullest. I hope to be able to continue working with all of you to give renewed hope to everyone living with kidney disease in Quebec.

2 Continuing to boost fundraiser revenues by developing a structure that encourages major donations and the ongoing development of our fundraising activities

3 Continuing to promote the KFoC’s programs and organ donation in Quebec

Jérémie Bouchard President The Kidney Foundation of Canada Quebec Branch

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NEWS

LONG-TIME KIDNEY FOUNDATION VOLUNTEER TONY LOFFREDA JOINS THE SENATE Our heartfelt congratulations go out to Tony Loffreda on his appointment as an independent senator.

He will fill the seat vacated by the Conservative caucus’s Ghislain Maltais last April.

Mr. Loffreda has been a Foundation volunteer for over 20 years. As Honorary Chairman of the Golf Classic and the Founder’s Award Gala, his commitment has helped rally the business community around the Foundation’s cause.

LUCIANO D’IGNAZIO HANDS A PERSONALIZED OTTAWA SENATORS JERSEY TO TONY LOFFREDA DURING THE 2019 GOLF CLASSIC

Mr. Loffreda’s dedication to the Foundation attests to his steadfast desire to support the development of his community and its most vulnerable members. We are convinced that the skills and human values he shared with our organization will continue to serve Canadians as he fulfils his role as member of the Senate.

THE 9th ANNUAL CUNNINGHAM’S HUDSON CHARITY GOLF TOURNAMENT RAISES $4,300 FOR THE KFOC The 9th Annual Cunningham’s Hudson Charity Golf Tournament for The Kidney Foundation of Canada took place on June 18, 2019. For the occasion, over 200 golfers took to the greens at Whitlock Golf and Country Club in Hudson, raising $4,300 to fund research, patient programs, prevention initiatives and organ donation awareness programs.

We wish to thank our Platinum sponsors: SBR Électrique, EYTON-JONES Insurance & Financial Services, Hudson Hardware and First Nations Wireless. We also want to thank our Gold and Silver sponsors without whom this tournament would not be possible.

The Kidney Community Newsletter FALL 2019

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NEWS

ABITIBI-OUEST DOOR-TO-DOOR CAMPAIGN RAISES NEARLY $30,000 Held from April 1 to June 20, 2019, in La Sarre and a number of Abitibi-Ouest municipalities under the direction of Honorary Chair Samuel Doré, The Kidney Foundation of Canada’s doorto-door campaign raised nearly $30,000.

In addition to the funds raised through the door-to-door campaign, a charity brunch and donations by a number of La Sarre businesses further contributed to the outstanding outcome of this traditional Abitibi-Ouest fundraiser for The Kidney Foundation of Canada. All money raised will go toward kidney disease research and programs for patients and their families.

The Foundation wishes to highlight the exceptional work of the region’s door-to-door campaign volunteers: Françoise Gauthier, who started

(LEFT TO RIGHT) GISÈLE BÉDARD, SAMUEL DORÉ, GISÈLE GOULET, GHISLAINE NICOLE AND FRANÇOISE GAUTHIER

volunteering 20 years ago, knocked on some 240 doors this year, raising upwards of $2,300; Gisèle Bédard, a 10-year volunteer; Ghislaine Nicole, who has been volunteering for five years; and Gisèle Goulet, who has been a volunteer for 13 years. The Kidney Foundation of Canada wishes to thank them for their immense loyalty over the years. In total, nearly 70 volunteers got involved in La Sarre and 20 other municipalities in the region. Congratulations on your amazing work!

"I personally thank all those who contributed to the success of this supper, which raises $13,567 that will help the Kidney Foundation continue its patient support and awareness activities" - Josée Parenteau, head of the Kidney Foundation Estrie section.

A GREAT SUCCESS FO THE 25th EDITION OF THE JEAN-JACQUES BÉGIN BENEFIT-SUPPER The Jean-Jacques Bégin benefit-supper of the Foundation's Estrie section raised $13,567 during the 25th edition on October 4 at the Club de golf de Sherbrooke. More than 100 guests enjoyed this oyster dinner, unique in the region, while supporting the Foundation and people living with kidney disease.

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The Foundation thanks all the volunteers involved in the organization, the sponsors and all the guests who made it possible. Well done!

RECAP OF OUR EVENTS 2019 QUEBEC KIDNEY WALK

THE 2019 KIDNEY WALK: AN INCREDIBLE MOBILIZATION BY THE KIDNEY COMMUNITY A huge success—thanks to you! Almost 3,000 of you came out to walk in the 12th annual Kidney Walk, raising over $570,000 along the way!

Thanks to your efforts, the Kidney Walk was a resounding team success.

Supporting patient services and research, your donations will help improve quality of life for the thousands of people in Quebec who are affected by kidney failure.

A BIG THANK-YOU goes out to all the participants, donors and local and national partners who have supported the Kidney Walk events held to date.

We would also like to thank all the Honorary Chairs and volunteers who worked tirelessly to make the event such a huge success. Without their contribution, the Kidney Walk would not have been possible.

This year, three prizes were awarded to teams taking part in the 2019 Kidney Walk:  “La Famille Veillet et compagnie” from the Val-d’Or Walk won the prize for the team with the highest average amount raised per member. In the photo, three Veillet family members: Frédéric, France and Maurice. France received this year’s Fundraising Champion’s jersey.  “Groupe Laflamme” from the Rouyn-Noranda Walk took home the prize for the team with the most members.  “Les Reinvincibles du CHUM” from the Montreal Walk nabbed the prize for the team with the biggest fundraising total.

Congratulations to these three outstanding teams from this year’s Kidney Walk.

December 31 is the deadline to officially close off your fundraiser on the Kidney Walk web site: www.kidney.ca/quebecwalk Photos from the 2019 Kidney Walk are available under “Photos” and “Albums” on our Facebook page: www.facebook.com/reinquebec 2019 JOLIETTE KIDNEY WALK

“LA FAMILLE VEILLET ET COMPAGNIE” FROM THE VAL-D’OR WALK

“GROUPE LAFLAMME” FROM THE ROUYN-NORANDA WALK

The Kidney Community Newsletter FALL 2019

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RECAP OF OUR EVENTS

21st MONTREAL GOLF CLASSIC RAISES $240,000

THE 2019 GOLF CLASSIC STEERING COMMITTEE

On September 16, 228 golfers took part in the Foundation’s 21st annual Golf Classic at the prestigious Royal Montreal Golf Club, North America’s oldest course.

Under the leadership of Honorary Chair Stéphane Achard, Executive VicePresident of Commercial Banking & Insurance, National Bank of Canada, and Honorary Co-Chairs Luciano D’Ignazio, CPA, CA, Schwartz Levitsky Feldman SENCRL/SRL/LLP, Manu Kakkar, CPA, CA, MTax, TEP, B.Sc.(Hons), Manu Kakkar CPA Inc., and Dr. Rita Suri, Director, Division of Nephrology, McGill University Health Centre, the annual Golf Classic raised $240,000 this year, making it one of the Foundation’s most prestigious fundraising events.

A MAGICAL WEEK AT THE KIDS’ SUMMER CAMP

We are eternally grateful to the Steering Committee and the countless volunteers for their dedication, as well as to the golfers and cherished sponsors who’ve contributed to the event’s resounding success over the past 21 years.

The camp gives kids living with kidney disease or who’ve had a kidney transplant a chance to have some fun in the summer sun in a setting specially adapted to their unique needs. It also provided parents with a week of well-deserved R&R with complete peace of mind.

The Kids’ Summer Camp run by the Quebec Branch of The Kidney Foundation of Canada was held from August 5 to 11.

This year, 51 young dialysis patients and transplant recipients took part.

EAGLE

Thanks to a team of medical volunteers from the Montreal Children’s Hospital and Sainte-Justine Hospital, children got to enjoy a weeklong vacation while continuing their treatments. The camp also provides children with an opportunity to swap stories with other kids like themselves and make new and special friendships. Many thanks to everyone who supports the Foundation’s Kids’ Camp!

PAR

A BIG THANK-YOU TO OUR SPONSORS!

We would like to thank our main sponsors

Fédération Italienne St-Joseph The Chelminski Family Foundation La Fondation Famille Chelminski

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SPECIAL REPORT: KIDNEY DISEASE RESEARCH

Total invested in Research in 2018:

$4,069,244 RESEARCH BY THE NUMBERS The Kidney foundation of Canada supports research into all aspects of kidney health, disease, and treatment, and has provided Canadian researchers with more than $120 million in grants and awards since the start of the Foundation in 1964. over this time period, research has transformed the options and care for people living with kidney disease. However, while advancements have been made, much more needs to be done and we continue to search for a cure and envision a time when people with kidney disease can thrive and live longer and fuller lives.

BIOMEDICAL RESEARCH GRANTS: $1,889,536

46%

KRESCENT PROGRAM: $997,000

25%

PARTNERSHIPS: $862,000

21%

ALLIED HEALTH AWARDS: $320,708

8%

IN 2018, THE KIDNEY FOUNDATION PROVIDED FUNDING TO:

TOP 10 RESEARCH THEMES FUNDED IN 2018:

40  Biomedical Research Grants 19  KRESCENT Awards 7  Allied Health Awards 2  Alport Syndrome Awards 68  Principal Applicants 95  Co-Applicants 98  Collaborators 30  Research Institutes 8  Provinces 2  Partnerships in large networks

 Transplantation  Kidney Biology  Renal failure  Dialysis  Chronic Kidney Disease  Glomerulonephritis  Cancer  Genetics  Diabetes  Hypertension

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SPECIAL REPORT: KIDNEY DISEASE RESEARCH

PORTRAIT OF A RESEARCHER Dr. Maxime Bouchard McGill University, Quebec 2018-2020 : $100,000 Biomedical Research Grants Category: Kidney development

Collective cell migration in urinary tract morphogenesis and disease Our laboratory works on the identification of genes affected in patients with “Congenital Anomalies of the Kidney and Urinary Tract” or CAKUT. This disease group is not well defined and includes patients with only one kidney, smaller kidneys, obstruction of the ureter or ureteral reflux. CAKUT affects 1 in 100 newborns and is the most frequent cause of chronic kidney disease and renal transplant in children.

The way we address the problematic of CAKUT is to try to reproduce the kidney and ureter defects in mice. Over the years we have generated and published about 10 different mouse strains with CAKUT-like urinary tract defects.

Most of the genes affecting kidney and ureter development act at a very early stage of urogenital system formation. They typically affect the formation of the primitive kidney (mesonephros) or the early stages of adult kidney development.

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In this proposal, we used advanced molecular techniques (single cell RNA sequencing) to identify potential regulators of mesonephros development. We used the CRISPR approach to identify which candidates affected mesonephros development in the mouse embryo.

This work identified a gene called Ymo1 that is involved in the formation modification of the cell skeleton. Changes in the structure of the cell skeleton (cytoskeleton) is responsible for the changes in cell shape that are necessary for cells to move (by themselves or in group) or become stiff and packed together.

We therefore propose to study our new mouse model to understand how the cell skeleton regulates the formation of the mesonephros but also the adult kidney and ureter. The genes – important for early kidney development are often also involved at later stages of kidney formation, which can generate other forms of CAKUT-like defects.

To fully understand the implication of our new regulator of kidney development in CAKUT, we also propose to sequence the DNA of 95 patients (children) with CAKUT and determine if they carry mutations in this gene.

This work will be beneficial to public health and is relevant to the KFOC mission in several ways. It will document the importance of the cell cytoskeleton in kidney development (for which we know little); it will generate murine models to better understand how defects in kidney development lead to CAKUT; it will help better define the disease group CAKUT for which there is no clear molecular definition at this time; and finally, it will help pediatric nephrologists decide on the best diagnostic and method of intervention when they are referred patients affected with kidney and ureter malformations at birth.

UPCOMING ACTIVITIES

Fifth edition of the New Lease on Life Benefit Concert for the Kidney Foundation of Canada at the Maison Symphonique.

NOV 21

CZECH VIBRATIONS Featuring works by Dvorak and Janacek Hannu Lintu conducts the Orchestre Symphonique de Montréal, with a performance by acclaimed cellist Alban Gerhardt.

Cocktail 6 p.m.

Concert 8 p.m.

kidney.ca/benefitconcert

BUY YOUR TICKETS NOW!

THE FOUNDATION PRESENTS THE “CZECH VIBRATIONS” BENEFIT CONCERT FEATURING THE ORCHESTRE SYMPHONIQUE DE MONTRÉAL The KFoC is pleased to invite you to the 5th edition of the New Lease on Life Benefit Concert on November 21, 2019, at 6 p.m. at the Maison symphonique de Montréal.

This year’s event will shine the spotlight on conductor Hannu Lintu and world-famous cellist Alban Gerhardt, best known for his intensely expressive playing, who together will perform a sensational program featuring Dvorák’s Cello Concerto in B minor, Op. 104, Lutosławski’s Symphony no. 4, and Sinfonietta, by Leoš Janácek.

Your support will help raise funds for the Quebec Branch of the KFoC, which will go toward medical research, patient services and advocating for quality care for everyone living with renal failure in Quebec. We hope you’ll join us for what promises to be a magical evening.

For more on the evening’s program and to purchase tickets, visit the concert’s website at: kidney.ca/benefitconcert

MARK YOUR CALENDARS! SAINT-JEAN-SUR-RICHELIEU Fun bowling event – November 16, 2019 Symposium on Chronic Kidney Failure Prevention November 29, 2019 (for health professionals only) MONTRÉAL New Lease on Life Benefit Concert – November 21, 2019 Scotiabank Charity Challenge – April 25-26, 2020

To bring some holiday cheer to people with kidney disease and their loved ones, the Foundation organizes Christmas dinners in a number of regions throughout Quebec.

For more information on our events and activities: DANY BABIN 1-800-565-4515, ext. 232 dany.babin@rein.ca

CALENDAR

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UPCOMING ACTIVITIES

JOIN THE FOUNDATION FOR THE NEXT SCOTIABANK CHARITY CHALLENGE If you enjoy a good challenge, especially if it involves running, then we’ve got just the thing for you! Join the Foundation for the next Scotiabank Charity Challenge, a chance to take part in a major sporting event while raising money for a good cause.

In Quebec today, 550,000 people are affected by kidney failure.

Take part in the season’s first race to help improve the lives of everyone living with kidney disease.

The Scotiabank Charity Challenge will take place on April 25 and 26, 2019, at Jean-Drapeau Park in Montreal.

The event will feature a number of races—choose between the Montreal kids’ race and the 5K, 10K and 21K races.

In 2018, 71 participating charities raised a total of $1.35 million, including $16,000 for the KFoC.

THE KIDNEY FOUNDATION TEAM AT THE 2019 SCOTIABANK CHARITY CHALLENGE

For more information or to register, contact Dany Babin at 1-800-565-4515, ext. 232, or dany.babin@rein.ca

THE DOOR-TO-DOOR CAMPAIGN CONTINUES THIS FALL IN A NUMBER OF REGIONS The second stage of the 2019 Door-to-Door Campaign will be taking place this fall. We wish to extend our sincerest thanks to everyone who supports this campaign. Thanks to you, we can continue pursuing our mission and honouring the Foundation’s commitments to research, patient services and organ donation.

We will be active in a number of regions throughout Quebec and need your help in the Beauce region, Sept-Îles and Baie-Comeau, the North Shore, the Metropolitan Quebec City area, and Coaticook in the Eastern Townships.

For questions or comments, or to lend us a hand, contact Maryse Néron at 418-683-1449 or maryse.neron@kidney.ca (or Nathalie Saulnier for BaieComeau at 418-543-9644).

Thanks again and wish us luck for this second stage of the Door-to-Door Campaign!

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ORGAN DONATION

10 THINGS ONLY SOMEONE LIVING WITH A KIDNEY TRANSPLANT UNDERSTANDS When you do not look sick, it can be difficult to explain your chronic kidney disease to others. Living with a transplant can also be hard to explain. Most people think of a kidney transplant as a ‘cure’ for kidney disease, but we understand that it is a treatment, and, certainly not the end of our journey with kidney disease.

We asked you to help explain what it is like living with a kidney transplant.

Thank you to our online community for joining the conversation and sharing your insights.

HERE ARE 10 THINGS ONLY SOMEONE LIVING WITH A KIDNEY TRANSPLANT UNDERSTANDS: 1 Getting frustrated when people say “You had a kidney transplant? You don’t look sick!”

2 Our beautiful scars (and explaining the scar is NOT an extra belly button…)

3 Waking up three times a night to pee and being thankful. You are the only one happy to have to stop on a road trip to find a restroom.

4 The many medications and doctor visits.

5 The fear of phone calls: always feeling anxious of a possible kidney rejection.

6 Prednisone mood swings.

7 Hair loss and weight gain.

8 No more gardening without gloves. You live like a hermit during flu season!

THE LIVING DONOR KIDNEY TRANSPLANT PROGRAM IS ONE STEP CLOSER TO BECOMING REALITY We have good news! Launch day for the provincial living donor kidney transplant program is closer than ever. Funds were made available so that each of the province’s five transplant centres will see three new employees dedicated to living donation join their current teams—a nurse, a social worker and an assistant.

First announced in 2018, the program will make it possible to inject the necessary resources into the healthcare system to double the number of living donor kidney transplants— currently, some 50 such transplants are carried out annually.

The additional 50 transplants that the program will enable will save the healthcare system in excess of $110 million over 10 years.

9 Being a “sick” healthy person. The “healthies” will never get it!

10 The feeling of genuine gratitude for the person who gave the gift of life.

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ORGAN DONATION

GIFT OF LIFE HUMANITARIAN AWARD: A BEAUTIFUL WAY TO RECOGNIZE AN EMPLOYER WHOSE EFFORTS SUPPORT ORGAN DONATION In 2006, the Quebec Branch of The Kidney Foundation of Canada launched the Gift of Life Humanitarian Award to recognize the humanitarian efforts that businesses have made in a variety of ways to facilitate kidney transplants or the kidney donation process for one or more of their employees.

This award arose from a stark reality in which around 805 Quebecers are currently on the province’s organ donation list.* Of this figure, 70% are hoping for a kidney.

Despite the fact that 291 kidney transplants were performed in 2018, nothing can be taken for granted when it comes to organ donation.

Consequently, the Foundation continues striving to raise public awareness and wishes to remind everyone of just how vital organ donations are for people on the waiting list for a new kidney.

Nominating your company is as easy as 1-2-3. Go to kidney.ca/humanitarian, print and complete the form, and send it off to us. The Kidney Foundation of Canada, 2300 René-Lévesque Blvd West, Montreal, QC, H3H 2R5.

Once all the criteria have been met, we’ll contact you to start the awarding process. It’s that easy! What better way to recognize the support you or someone you know received during the donation or transplant process! *as of December 31, 2018

ARE YOU FAMILIAR WITH THE KIDNEY FOUNDATION OF CANADA’S LIVING DONOR RECOGNITION PROGRAM? If you’re a living donor, you could receive a medal1 in recognition of your life-giving gesture.

To find out more, contact Philippe Vincent, Coordinator of Patient Programs and Services, at 514 938 4515 or 1-800-565-4515, ext. 222, or philippe.vincent@rein.ca 1

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THE SIZE OF A NICKEL, IT CAN BE WORN LIKE A CHARM

The Kidney Community Newsletter FALL 2019

KIDNEY CAR

THE BAIE-COMEAU REGION IS NOW SERVED

BY THE KIDNEY CAR PROGRAM The Baie-Comeau region is now being served by the Kidney Car Program thanks to our new partner, AIM Recyclage Desgagné.

Every year, thousands of vehicles are recycled by The Kidney Foundation of Canada through an original program that takes cars off the road to raise funds for kidney disease research and services delivered by the KFoC, which seek to improve quality of life for people living with the disease.

Towing is free, and the car’s donor receives a $300 tax receipt from The Kidney Foundation of Canada. In some cases, and only after an evaluation, higher-value cars may be deemed suitable for resale. If that

happens, they can be resold, at which point the vehicle’s former owner will receive an income tax receipt for more than $300* (based on the assessed value at the time of donation).

Donating a car is an eco-friendly thing to do, as we guarantee that if your car isn’t sold, it will nonetheless be fully recycled in accordance with the industry’s very strict environmental standards.

Don’t wait!

Donate your car today by completing the form available online at kidneycar.ca or by calling us at 1-888-228-8673.

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KIDNEY COMMUNITY KITCHEN

STEPS TO A MORE KIDNEY FRIENDLY DIET: ANIMAL VERSUS VEGETARIAN PROTEINS

By Kelvin Au, Student and Dani Renouf, RD, MSc, CDE Persons living with chronic kidney disease (CKD) are often asked to lower protein in their diet to improve kidney health. But how much protein is too much or too little? How do animal-based proteins compare to plant-based? A dietitian can answer these important questions.

Most North Americans consume more protein than recommended for their individual needs. However, healthy kidneys can process the extra protein waste efficiently. In chronic kidney disease, the kidney cannot cope with the excess protein. Thus, the protein’s waste products build up in the body, leading to poor health outcomes. For those with kidney conditions, watching protein consumption can ensure the kidneys have a lower, manageable workload with less waste build-up in the body.

Recent studies have found that foods with animal-based proteins produce more waste products than foods with plant-based proteins.

Consuming more plant-based proteins can help lower the build-up of waste products. Additionally, plant-based proteins are more easily retained by the body, leading to lower protein loss in urine.

Phosphate is another dietary component that many people with chronic kidney disease strive to lower. Generally, plant-based protein foods

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contribute to a lesser degree to blood phosphate levels, as the phosphate found in these foods is not as readily absorbed by our body. Specifically, if you replace 3 ounces of ground meat at a meal with one cup of beans, you get the same amount of protein, but less phosphate.

Various plant-based protein foods can replace most animal meats in the diet. Additionally, these foods are often cheaper than their animal meat counterparts! Instead of chicken, tofu can be substituted for a more kidney-friendly diet. Tofu fingers can be used in lieu of chicken nuggets.

Lentils are another great plant-based protein source. A dal fry is an excellent source of kidney-friendly plant-based proteins that can replace many ground beef dishes. Various beans can be substituted in recipes that call for the use of ground meat. For example, a can of garbanzo and a can of kidney beans can replace 1.5 pounds of lean ground beef in your favourite recipes.

Many other healthy kidney-friendly recipes low in potassium and phosphate are all available in our website Kidney Community Kitchen!

SPECIAL COLLABORATION JACQUES ROBIDAS (PATIENT, CENTRE), CAROLINE BESSETTE (TEACHER, RIGHT) AND BONNIE ARIAS (STUDENT, LEFT).

PHOTO CREDIT: CHANTAL RODRIGUE

ORAL HEALTH AND KIDNEY FAILURE: AN INITIATIVE WORTH MENTIONING

By Chantal Rodrigue, nurse practitioner specializing in adult care (IPSSA) /2019-06-CIUSSS ESTRIE CHUS If you suffer from kidney disease, improving your eating habits can help you feel better and manage your disease better.

Take a huge bite out of life A project on oral health, initiated in Sherbrooke’s hemodialysis unit.

Based on the findings of Statistics Canada’s 2008-2009 Canadian Community Health Survey - Healthy Ageing, a study of oral health among Quebec’s seniors was conducted and showed the situation to be one of grave concern (INSPQ, 2016).

Three quarters of seniors wear dentures, and nearly half of those 65 or over reported having no remaining natural teeth. The incidence of complete toothlessness increases significantly with age (INSPQ, 2016).

One in ten Quebecers aged 65 or over refrains from eating certain foods because of oral health issues, a phenomenon more common among completely toothless seniors (INSPQ, 2016), which in turn raises concerns over nutrition (Ordre des hygiénistes dentaires du Québec, 2019).

$10 million a year to deliver oral health services in retirement homes.

We know that many patients do not live in retirement homes, which brings up the topic of our ageing population of chronic kidney failure (CKF) patients undergoing hemodialysis, who hail from a range of socioeconomic backgrounds.

It is worth noting that Europe is well ahead of us in terms of oral health among people with kidney failure.

From the moment the problem is recognized, there is no excuse not to provide access to the required care. We therefore launched a “win-win” project, inviting dental hygiene students to come gain experience at a university health centre. Hemodialysis patients benefit from the care delivered by these students, who apply their valuable knowledge as part of an internship in Public Health.

While many seniors brush their teeth, few floss. Seven out of 10 seniors habitually brush their teeth at least twice a day, whereas only four out of 10 use dental floss at least once a day (INSPQ, 2016).

As part of the project, we met seven patients who agreed to complete a questionnaire about, among other things, functional complaints, oral health and dental check-ups. A basic oral exam was conducted and included checking that the patients’ dentures fit properly. The patients were given recommendations and shown the most effective way to brush their teeth.

A little over half of Quebec’s seniors 65 or over reported having seen their dental professional in the last two years, and only a third of seniors 85 or over had seen a dental professional in the same period (INSPQ, 2016; Bélanger, R., Blanchet, C., Hamel, D., 2016).

A few months ago, MNA Marguerite Blais announced funding of

Among the general population, oral health depends to some extent on genetics, but also on oral hygiene, the consumption of sugary foods, the use of tobacco products, which impacts vascular health and gums.

Dry mouth related to age or medications can also be an issue, as saliva plays an antibacterial, antiviral and antifungal role inside the mouth. And The Kidney Community Newsletter FALL 2019

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SPECIAL COLLABORATION

lastly, poorly fitted dentures can affect oral health as well.

People living with chronic kidney failure can also experience:  lesions induced by secondary hyperparathyroidism (a condition that weakens the bones), affecting the soft tissues and teeth;  the risk of infection;  the particularities of the CKF diet and limited liquid intake (Montagnac, 2005).

During the evaluation, three in seven patients could name a periodontal issue. Sometimes, the problem is first noticed by the patient’s loved ones; halitosis (bad breath) is an example.

Such patients therefore have a greater risk of developing complications, including the loosening or loss of teeth, affecting their ability to bite, grind and chew their food. These functions are essential to avoiding malnutrition and anemia and to limiting infections.

Malnutrition can be caused by infections Infected sites must be cleared up in all patients, not just in those awaiting a transplant or who have valve disease (an illness affecting the heart valves).

And then we mustn’t forget cancer screening, especially when there’s a history of smoking or alcohol consumption. Future transplant recipients must continue to keep an eye out for these conditions after the transplant (Montagnac, 2005).

Furthermore, recent research suggests a possible link between oral diseases, kidney failure and certain inflammatory diseases. (Ordre des hygiénistes dentaires du Québec, 2019).

It would have been interesting to have data on tobacco consumption and patients’ social class in order to find any potential correlations between the two. X-rays would also have been useful to paint a clearer picture of our hemodialysis patient population (Montagnac, R., 2005).

Fighting tooth and nail The Canadian Dental Association recommends brushing at least twice a day and flossing daily (Canadian Dental Association, 2019).

Unfortunately, we found that only three in seven patients brush their teeth at least twice a day.

A lax approach is not uncommon. Some patients neglect their health in general. Others have financial problems underlying the neglect.

We know that hemodialysis patients often suffer from depression. The psychological aspect is something to consider in patients, who might see their attention to oral hygiene wane (Costantinides, F. et al., 2018).

Armed to the teeth

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The Kidney Community Newsletter FALL 2019

To establish the winning conditions for better oral health, it is important to start with small initiatives that could eventually be broadened to include other areas of nephrology: predialysis, home dialysis and renal transplant clinics.

Early intervention is preferable (Lagarde, L., 2015).

Future initiatives must include partnerships between patients, nephrologists and dentists. Focus should be placed on the need for an annual dental check-up throughout the patient’s life.

Other studies in patients suffering from kidney failure are needed in order to set out the priorities to focus on.

Financial solutions will need to be addressed.

The solution may also lie in interdisciplinary efforts, which often give rise to great ideas...

A big thank-you to the Cégep de Saint-Hyacinthe for their invaluable cooperation

References Montagnac, R., (2005). “Pathologie dentaire et insuffisance rénale.” Échanges de l’AFIDTN, No. 71, pp 50-51. Ordre des hygiénistes dentaires du Québec (2019).

“La santé buccodentaire : un investissement pour une vie de qualité!” ohdq.com, pp 1-15.

Canadian Dental Association (2019). maboucheensante.com Bélanger, R., Blanchet, C. , Hamel, D., (2016). “La santé buccodentaire des aînés québécois.” Collection Vieillissement en santé. Institut national de santé publique du Québec. Quebec City., 21 pp.

Jover Cerveró A, Bagán JV, Jiménez Soriano Y, Poveda Roda R., (2008).

“Dental management in renal failure: patients on dialysis.” Med Oral Patol Oral Cir Bucal. 2008 Jul 1;13(7):E419-26.

Fulvia Costantinides, Gaetano Castronovo, Erica Vettori, Costanza Frattini, Mary Louise Artero, Lorenzo Bevilacqua, Federico Berton, Vanessa Nicolin, and Roberto Di Lenarda, (2018). “Dental care for patients with end-stage renal disease and undergoing hemodialysis.” International Journal of Dentistry. ncbi.nlm.nih.gov/pmc/articles/PMC6258100/ Lagarde, L., (2015). “Rapport entre la maladie rénale chronique du stade 2 à 5 sans suppléance et les pathologies de la cavité buccale.”

Dissertation leading to the Doctor of Dental Surgery (DDS) degree. #64.

Université de Bordeaux. pp 1-55.

SPECIAL COLLABORATION

MY FOURTH PARTICIPATION TO THE WORLD TRANSPLANT GAMES

By Lloyd Mangahas, B.Sc, certified kinesiologist from Montreal and two times kidney tranplant.

This past August, I travelled to NewcastleGateshead, England to compete as an athlete in the World Transplant Games, the world’s largest organ donation awareness event. The purpose of this Olympic-styled gathering is to celebrate the transplant community and to showcase the inspirational stories of those who have received and donated organs. It was wonderful opportunity for healthy organ transplant recipients, their families and supporters to come together to celebrate the Gift of Life and raise awareness of the impact organ donation can have.

Here are a few fun facts about the games:  It is held every two years in a different host nation and city  There were over 1,000 athletes from over 55 countries represented in NewcastleGateshead  Participants ranged in age from 4 to 85 years old  Athletes competed in the following sports: golf, basketball, archery, volleyball, soccer, athletics, cycling, squash, tennis, petanque, badminton, table tennis, darts and swimming  Team Canada won a total of 64 medals, with the 4th highest gold medal haul out of all countries  The next summer Transplant Games are to be held in Houston, USA in 2021; the next winter Transplant games to be held in Banff, Alberta in 2020.

Although there were many elite athletes that are exceptional in their level of fitness and their dedication to their sport discipline is unparalleled, it is certainly not a prerequisite to be a professional athlete to participate at these games. People of different ages and of all kinds of transplants with various levels of fitness and athleticism were certainly included. But there is one thing that connected us all: the power of a life-saving organ transplant.

There is not enough to be said about the bonds we shared about our journey from sickness and return to health along with a newfound appreciation for life. Besides the competition, meeting different people from around the world with similar life experiences, shared camaraderie and developing lifelong bonds were certainly a highlight for all participants.

This was my fourth experience attending the World Transplant Games, and this occasion was especially significant for me as I am celebrating 5 years of post-kidney transplant health. I competed in tennis singles and doubles, and although I did not win a medal, I tried my best in the face of tough competition and I enjoyed every minute of it. It was with great pride to have been able to represent Canada once again.

I never would have imagined what I am able to accomplish today if not for my own personal journey from first being diagnosed with kidney disease, to enduring the hardships that the disease brought me, to regaining a decent quality of life through a kidney transplant, to resuming my active and competitive lifestyle, and finally to being able to travel and see the world and connect with so many wonderful people. In honour of my donor and donor family, THANK YOU for giving me my second chance!

Lloyd Mangahas, B.Sc is a certified kinesiologist from Montreal.

He is a graduate from the Université de Montréal and has been working in the fitness industry for over 10 years. He is a proud survivor of two kidney transplants and has competed as an athlete at the Canadian, and World Transplant Games. He is especially dedicated to helping post-transplant patients regain their health and quality of life. He may be reached at info@coachlloyd.ca.

The Kidney Community Newsletter FALL 2019

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PATIENT SERVICES

THIS YEAR, GET VACCINATED AGAINST THE FLU! In recent years, numerous studies have been conducted in the field of flu vaccination. In June 2018, experts in Québec issued a scientific advisory in which they made recommendations to reduce flu-related hospitalizations and deaths. To achieve this objective, they recommend that efforts to promote and improve vaccination services focus mainly on the chronically ill.

The considerable data presented in the advisory includes the following:  Almost nine out of ten deaths caused by influenza occur in the chronically ill and in those aged 75 and over.  Most patients hospitalized for influenza have a chronic disease (80%).

The advisory shows that the chronically ill are more at risk of flu-related hospitalization and death. Indeed, because of your health condition, complications from the flu can have serious health consequences, such as respiratory difficulties, pneumonia or even death. Treatment of these complications may require a hospital stay of several days, even weeks, resulting in a loss of autonomy in some cases.

The impact of kidney disease A diagnosis of kidney disease can have a devastating effect on patients. Risk of depression is higher in patients with chronic kidney disease (CKD) and who on dialysis, rates of depression are 3 times as high in adults with end stage renal disease compared to the general population.

Through out the month of November leading to Giving Tuesday (December 3rd), we will introduce you to Mauro, Ava, Melinda and Ariel.

It is vital that we let them know they are not alone by showing our support.

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The Kidney Community Newsletter FALL 2019

Therefore, the experts believe that vaccination is still beneficial despite the vaccine’s limited effectiveness. Vaccination is still the best way to protect yourself! The flu vaccine is offered free of charge to people who have a chronic disease, such as kidney disease, people aged 75 and over, as well as their informal caregivers and people living in the same household.

If you have never been vaccinated against pneumococcal infections, ask for the pneumococcal vaccine when you get your flu shot. Adults usually only need a single dose of the vaccine in their lifetime to be protected.

Find out more from your CLSC (local community services centre), doctor, pharmacist or visit the Government of Québec’s website at the following address: Québec.qc.ca/pneumocoque.

Vaccination, the best protection!

This is a message from the ministère de la Santé et des Services sociaux

2019

THE QUEBEC BRANCH OF THE KIDNEY FOUNDATION OF CANADA 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5 Phone: (514) 938-4515 • 1 800 565-4515 Fax: (514) 938-4757 • infoquebec@kidney.ca www.kidney.ca/quebec

HOW TO HELP  I am over 18 years old and I would like to become a member of The Kidney Foundation of Canada - Quebec Branch, to support its mission of research, patient services, organ donation promotion and fundraising. As a member, you will be invited to attend the Annual General Meeting of the Quebec Branch of the Foundation and your Chapter if applicable. No official Tax Receipt will be sent to you for your membership fee. As well, the Foundation may communicate with you and, at any time, you may terminate your membership on simple notice to the Foundation  1 year - $10

 2 years - $20

 I would like to become a “friend” member of The Kidney Foundation of Canada, Quebec Branch, to support its mission of research, patient services, organ donation promotion and fundraising. I understand that this membership is free of charge and does not confer any right to vote, that the Foundation may communicate with me and that at any time I may terminate my membership on simple notice to the Foundation  I would like to make a donation at The Kidney Foundation of Canada, Quebec Branch Full name Address City

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DONATION FORM Please find enclosed my donation for:  $20

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 Cheque made out to The Kidney Foundation of Canada.  Visa

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An official receipt for tax purposes will be issued for all donations of $20 or more.  I would like to receive my tax receipt by email – I therefore understand that I will not get one by mail.  Please remove my name from your mailing lists.  I would like to receive the electronic edition of the kidney community newsletter We will use the information contained in this form to send you news about kidney health and advances in research, to keep you informed about the social issues surrounding patient care, and notify you of our various outreach initiatives and fundraising activities.

If you would prefer not to be contacted regarding any of the above, please call us toll-free at 1-877-361-4947.

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