Kidney Community Newsletter | Spring 2019

SPRING 2019

2019

The Kidney Foundation of Canada – Quebec Branch

MANY OCCASIONS TO WALK IN QUEBEC FROM APRIL TO SEPTEMBER. SEE ALL DATES AND CITIES ON PAGE 6.

Dialysis patient Fernand Mercier and his family invite you to walk the Walk with them. Pages 6 to 9

ORGAN DONATION

2018 statistics for Quebec Page 4

PATIENT SERVICES

A wide range of programs and services Page 10

RESEARCH

A researcher thanks the KFOC for its support Page 11

WORD FROM THE PRESIDENT AND THE EXECUTIVE DIRECTOR

THE KIDNEY COMMUNITY MADE SIGNIFICANT PROGRESS IN 2018 Each year, The Kidney Foundation of Canada (KFOC) does an even better job of raising awareness, among governments and the population, of the need to be concerned about kidney health and improve quality of life for people living with kidney disease. Each year, the Foundation supports patients by delivering free services aimed at reducing the impacts the disease has on their quality of life. Year after year, the Foundation is the main driver of research aimed at improving treatments and finding a cure for kidney disease. In every one of these respects, 2018 was a time of major progress in several areas, and we are delighted to tell you all about it.

Big news: a new living kidney donor program for Quebec On August 3, 2018, then-Quebec Health Minister Gaétan Barette announced the creation of the province’s own living kidney donor program. The program is the outcome of sustained efforts launched in 2012 by the Foundation’s Organ and Tissue Donation Committee under the leadership of CHUM’s Dr. Michel Pâquet. Thanks to the program, dedicated living-donation staff at the province’s five kidney transplant centres will be expanded and trained to better promote this option to patients and their loved ones. This dedicated staff will also facilitate and streamline testing of potential donors. Our goal is to double the number of kidney transplants carried out thanks to living donors to 100 by 2021.

Fulfilling the Foundation’s mission Our mission, our raison d’être, is manifested through our programs.

Whether supporting research, delivering patient services, promoting organ donation and kidney health, or advocating for patients’ interests, we are proud when our financial means enable us to invest more in our mission.

Financial development We were able to make these investments in our mission because our fundraising strategies yielded better results. Our revenues grew by nearly $300,000 in 2018, up 19% over 2017.

Thanks to our sustained focus and innovative strategies, the Kidney Car program also grew significantly in 2018. Our signature events (concert, golf tournament) also saw spikes in net revenues. The recruitment of a Campaign Cabinet President and the expansion of the cabinet itself both contributed to a 50% increase in revenues for the campaign.

Development of volunteering Achieving the KFOC's mission in Quebec relies on the commitment of over 3,000 volunteers involved in running programs and fundraising activities province-wide, and on volunteer leaders’ involvement in the governance of the Quebec Branch.

The Quebec Branch’s eight regional chapters carry out this important mission, thereby reaching most Quebecers. Kidney disease severely impacts the lives of those who have it, so it’s not surprising that the branches are staffed primarily by patients and their loved ones, whose work is essential to the cause. The branches are fragile entities, as they often depend on the health of their leaders. Branch volunteers are supported by a small team of skilled employees who help them on the ground, and by a Regional Development Committee tasked with developing training tools and organizing meetings where best practices can be shared.

A big heartfelt thanks goes out to all the Quebec Branch volunteers and employees, whose commitment and collaboration led to major strides forward for our mission in 2018.

Research enables our patients to receive the best possible treatments, while feeding our hope of finding a cure for kidney disease. We are proud to have provided $753,000 in funding for research and national programs, an increase of $262,000 over 2017.

We have spent over $772,000 supporting programs run by Quebec Branch volunteers and staff. Compared with 2017, that’s $50,000 more that was used to deliver services to patients and defend their interests among government health authorities in order to increase the number of kidney transplants taking place and raise public awareness about the importance of kidney health. More specifically, this additional spending allowed us to provide kidney patients with last resort financial assistance and more scholarships.

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The Kidney Community Newsletter SPRING 2019

Sylvie Charbonneau President The Kidney Foundation of Canada Quebec Branch

Martin Munger Executive Director The Kidney Foundation of Canada Quebec Branch

PREVENTION

OVER 100 HEALTH PROFESSIONALS ATTENDED THE FOUNDATION’S SYMPOSIUM ON PREVENTION Attended by over 100 people, the symposium on Chronic Kidney Disease (CKD) Prevention was held in Alma on November 9, 2018. The symposium’s goal is to inform health professionals about CKD. The event brought together GPs, nurses, dietitians, pharmacists and healthcare administrators from the Saguenay Lac-Saint-Jean region’s local community health centres (CLSCs), nursing homes (CHSLDs), private clinics and medical centres.

We would like to thank pharma companies Amgen, Sanofi and Otsuka for their contributions to the 2018 symposium.

THE 2018 SYMPOSIUM IN ALMA

2019 Symposium on Chronic Kidney Disease Prevention The next Symposium on CKD Prevention for health professionals from outside the nephrology field will take place on November 29 in the Montérégie-Centre (HautRichelieu-Rouville) region.

For more information: PHILIPPE VINCENT 1-800-565-4515, ext. 222  philippe.vincent@kidney.ca

GIFT OF LIFE HUMANITARIAN AWARD

RÉMY AUCLAIR ÉVALUATEUR AGRÉÉ FROM VAL-D’OR IS AWARDED BY THE 2019 GIFT OF LIFE HUMANITARIAN AWARD The Quebec Branch of The Kidney Foundation of Canada is pleased to confer the 2019 Gift of Life Humanitarian Award on Val-d'Or business Rémy Auclair Évaluateur Agréé. Through this award, the Foundation recognizes the humanitarian actions of Rémy Auclair Évaluateur Agréé, which facilitated the kidney transplant that its employee Sandra Bolduc underwent.

“Sandra is a member of the family. It’s an important cause and it can happen to anyone. Thank you for the award— we’re all really touched,”said company CEO, Rémy Auclair.

This award is conferred in a context where, in Quebec, 544 people* are awaiting a kidney transplant and, despite the fact that last resort compensation is available from the government to reimburse the expenses incurred by donors and recipients, only businesses and organizations can facilitate the organ donation or transplant process for their employees.

More than a mere distinction, the award seeks to raise awareness among Quebec’s employers about the importance of supporting their employees during the kidney donation or transplant process.

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. 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!

(LEFT TO RIGHT): HÉLÈNE PARADIS, EXECUTIVE DIRECTOR OF THE CHAMBRE DE COMMERCE DE VAL-D’OR, MAURICE VEILLET, MEMBER OF THE ADMINISTRATIVE BOARD OF THE KFOC IN ABITIBI-TÉMISCAMINGUE, RÉMY AUCLAIR, RECIPIENT OF THE 2019 GIFT OF LIFE HUMANITARIAN AWARD, AND NICOLE JALBERT, KFOC DEVELOPMENT OFFICER FOR ABITIBI-TÉMISCAMINGUE.

“I would like to thank Mr. Auclair for his great empathy over the years, for everything he’s done for me, and for supporting the kidney disease cause and The Kidney Foundation of Canada,” said Sandra Bolduc, assistant at Rémy Auclair Évaluateur Agréé and kidney transplant recipient.

* In Quebec, as at December 31, 2018 The Kidney Community Newsletter SPRING 2019

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ORGAN DONATION

THOUGH FEWER KIDNEY TRANSPLANTS TOOK PLACE IN QUEBEC, THE WAITING LIST FOR A KIDNEY CONTINUES TO SHRINK In 2018 in Quebec: - 497 people had transplants thanks to the generosity of 210 organ donors - 291 kidney transplants were performed, including 44 thanks to living donation This represents a drop of 18% over 2017. These figures show that nothing is a given when it comes to organ donation and that public awareness and education efforts must continue.

Also, as at December 31, 2018, in Quebec: - 805 people were on the waiting list for an organ; 544, or 70% of them, were awaiting a kidney.

- The waiting time dropped over 60% between 2012 and 2018, from 1,220 to 448 days.

The Foundation wishes to highlight the concerted efforts of all the stakeholders responsible for shortening the kidney transplant waiting list year after year.

All figures are sourced from 2018 Transplant Québec statistics. For more details, visit the Transplant Québec website.

THE KIDNEY FOUNDATION OF CANADA IS A PARTNER OF GREEN SHIRT DAY Green Shirt Day, which takes place every year on April 7, pays tribute to Logan Boulet, a 21-year-old Humboldt Broncos hockey player who died in the terrible bus accident that killed 16 people on April 6, 2018. Logan’s parents, Bernadine (Bernie) and Toby Boulet, honoured Logan’s wish that his organs be donated, and as a result, the lives of six Canadians were saved. In the wake of Logan’s vital donation, over 10,000 Canadians signed up as organ donors, creating what is now called the Logan Boulet Effect.

To obtain your green shirt, and for more info on Green Shirt Day, visit kidney.ca/green-shirt-day | 4 |

The Kidney Community Newsletter SPRING 2019

4 GENERATIONS ON THE SAME PHOTO DOMINIQUE SÉVIGNY (CENTER) WITH HER DAUGHTER CORINNE (LEFT) AND HER MOTHER HOLDING HER LITTLE GIRL IN HER ARMS

MY DAUGHTER’S THE STRONG ONE: THE WORDS OF A MOTHER WHO DONATED A KIDNEY TO HER DAUGHTER On August 29, 2018, I had the immense privilege and great joy of once again giving life to my daughter. For six long years, my daughter fought tooth and nail against a devious disease that slowly destroyed her kidneys. She received excellent medical care, overseen and treated by an entire nephrology team at Quebec City’s Hôtel Dieu Hospital.

They did everything possible to slow the progression of this irreversible disease. She was unable to avoid what would end up being too many long months of dialysis, but despite it all, her story has a happy ending.

Receiving a kidney from someone in excellent health is now common and an accessible process, one that I was keen on making possible. For nine long months, I was assessed from A to Z and was finally told not only that I was in perfect health, but that I was fully compatible with my daughter.

As for whether I should donate a kidney, I never gave it a second thought.

I wanted to have a chance to give my daughter a new lease on life so that she could regain her quality of life and enjoy living to the fullest: playing with her daughter, having a good time with her husband, running errands, going to work...

One fine morning, both of us being well looked after, we had our respective operations, and everything went well. Today, we’re both happy and healthy and really appreciate everything the medical community has done for us.

We’re grateful for everything, including modern medicine! And a heartfelt thanks to everyone who donates to the Foundation to keep scientific advances coming!

Dominique Sévigny Dominique has been taking part in the Quebec City Kidney Walk for the past five years and she’ll be joining us again this year. You can meet her as of 9 a.m. on May 26 at the Quai-des-Cageux pavilion on the Samuel-De Champlain Promenade. For details, see page 6 of our special Kidney Walk insert.

UPCOMING EVENTS

24th QUEBEC CITY CHAPTER GOLF TOURNAMENT The 24th edition of the Quebec City Chapter Golf Tournament will take place on June 17, 2019, at the Club de golf des Pins in St-Alban de Portneuf. The Honorary Chairs of this year’s event will be Fernand Dufresne, President of Preverco Inc., and Nancy Avoine, Managing Partner, Quebec City Office, Ernst & Young.

Tickets are $200 for individuals and $750 for foursomes, which includes a shared golf cart, greens fees and dinner. Dinner on its own is priced at $100.

For more information contact Maryse Néron at 418-683-1449 or maryse.neron@kidney.ca.

$50,000 GIVEN OVER TO THE FOUNDATION AT THE 2018 GOLF TOURNAMENT

21st ANNUAL KIDNEY FOUNDATION OF CANADA GOLF CLASSIC $235,000 HAVE BEEN RAISED DURING THE 2018 GOLF CLASSIC

The next Kidney Foundation of Canada Golf Classic will be held on Monday, September 16, 2019, at the Royal Montreal Golf Club.

Not only is this magnificent event a great opportunity to play on a worldclass course, it’s also a chance to enjoy a copious breakfast, socialize over cocktails and savour a sumptuous dinner prepared by the Royal Montreal Golf Club’s talented chefs.

But perhaps most importantly, it’s the perfect occasion to rub elbows with members of the business community, philanthropists and healthcare professionals, while raising money for the Quebec Branch of The Kidney Foundation of Canada. All funds raised will go toward funding medical research, delivering services to patients and their loved ones, advocating for access to quality healthcare for all Quebecers and promoting organ donation.

Details and registration: kidney.ca/qcgolfclassic

THE FOUNDATION PRESENTS THE “ALBAN GERHARDT AND DVOŘÁK’S FAMOUS CELLO CONCERTO” BENEFIT CONCERT WITH THE MONTREAL SYMPHONY ORCHESTRA The Foundation is pleased to invite you to the 5th annual New Lease on Life Benefit Concert on November 21, 2019, at 6 p.m. at the Maison symphonique de Montréal.

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.

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.

We hope you’ll join us for what promises to be a magical evening.

To find out more about the evening’s program and purchase tickets at $250 single price, visit the concert’s website at kidney.ca/benefitconcert or contact Dany Babin at 1 800 565-4515, ext. 232 or dany.babin@kidney.ca The Kidney Community Newsletter SPRING 2019

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2019

FORM A TEAM WITH YOUR FAMILY AND FRIENDS AND WALK THE WALK FOR PEOPLE SUFFERING FROM RENAL FAILURE

IT’S EASY TO REGISTER AND RAISE FUNDS WHILE HAVING A GREAT TIME! Visit kidneywalk.ca

kidneywalk.ca

OUR SPOKESPERSON

Take part in this unifying event where thousands of kidney community members—patients, healthcare professionals, families and supporters—come together for a great cause.

Choose where to walk and whether to sign up as an individual or part of a team. Join us for the 2019 edition of The Kidney Walk, to be held in 25 cities across Quebec from April to September:  Saturday, April 27: Saint-Eugène d’Argentenay  Sunday, May 19: Saint-Jérôme, Rimouski and Val-d’Or  Saturday, May 25: Rouyn-Noranda  Sunday, May 26: Dollard-des-Ormeaux, Sherbrooke, Boucherville, Châteauguay, Quebec City, Saint-Georges, Pontiac, Terrebonne, TroisRivières, Saguenay, Maniwaki and Saint-Jean-sur-Richelieu  Sunday, June 2: Gatineau, Granby and Saint-Hyacinthe  Sunday, June 9: Joliette, Montreal and Saint-Mathias-sur-Richelieu

MARTIN HÉROUX Film, television and stage actor “Kidney disease can affect anyone at any age. In fact, it happened to my son Romain— he was only three years old when he was stricken by acute nephritis. That’s when I Credit: Simon Duhamel decided to get involved. The Walk is a great opportunity to gather and get active with family and friends to contribute to advances in kidney disease research and raise public awareness about organ donation.”

Martin Héroux, Kidney Walk Spokesperson

JOIN THE KIDNEY COMMUNITY !

 Saturday, June 15: 2 events in Laval—the Kidney Walk and the 80-km Tour de rein cycling tour

We wish to welcome 150 teams of walkers this year !

 Saturday, September 14: Gaspé

Come in a couple, with friends, workmate or family !

Questions about the Walk in your region?

Contact Regional Coordinator François Caron-Melançon 1 800 565-4515, ext. 233, or francois.caron-melancon@kidney.ca.

NATIONAL PARTNER

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NATIONAL SPONSOR

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PROVINCIAL PARTNER

2019

PARTICIPANTS WANT YOU TO WALK WITH THEM!

DIALYSIS PATIENT FERNAND MERCIER IS HEAVILY INVOLVED IN THE ROUYNNORANDA KIDNEY WALK THE 2018 GASPÉ KIDNEY WALK COMMITTEE (GUI-GABRIELLE BOULAY FORTIN AT THE CENTER)

KRYSTEL MERCIER AND HER PARENTS

When Fernand Mercier went to hospital four years ago to have his high blood pressure checked, the last thing he ever expected was a diagnosis of renal failure. He suffered from headaches, but the doctors didn’t know why. In the end, he was told that his naturally occurring high blood pressure was not only causing his headaches, but more importantly, it was also causing his kidneys to deteriorate.

At 68, this father-of-five from Rouyn-Noranda had to resign himself to a big change in lifestyle. He was told he’d have to modify his diet to slow the deterioration of his kidney function.

Fernand held up for two years, but once his renal function dropped below 10%, he had to go on dialysis at Rouyn-Noranda Hospital, three times a week, four hours at a go. “It was tough to see our Dad like that, so we cheered him on and visited him often,” said his daughter Krystel Mercier, a teacher with the Rouyn-Noranda school board. “We play cards with him to get his mind off things; it makes him and us happier,” she added.

Unfortunately, Fernand isn’t eligible for a transplant.

Given that her father’s illness isn’t hereditary, Krystel has been wondering about how kidney disease develops and now considers herself well informed. Thanks to the Foundation, she knows a lot more about the things that can harm the kidneys and about the right mindset to adopt to avoid getting kidney disease.

For Krystel, the Walk is a good opportunity to promote prevention work and help fund research on kidney disease. “People sometimes don’t realize just how much their lifestyle can impact their kidney health,” she says.

This year, her entire extended family will be at Place de la Citoyenneté for the Kidney Walk on May 25. Fernand’s son, Jonathan Mercier, will serve as Honorary President of this year’s Rouyn-Noranda Kidney Walk.

KIDNEY TRANSPLANT RECIPIENT GUI-GABRIELLE BOULAY FORTIN AND HER PARENTS ARE INVOLVED IN THE GASPÉ KIDNEY WALK Aged 8, Gui-Gabrielle was rushed to emergency—she was having a stroke. The doctors quickly discovered that her kidneys were failing. In fact, due to a congenital malformation, they were smaller than normal. Her parents knew that one day Gui-Gabrielle would need dialysis to survive.

That day came in 2015. She was only 22 and had to undergo peritoneal dialysis treatments in Rimouski and later in Quebec City, which meant leaving Gaspé. “From then on, she relied on a machine. Her life changed dramatically, and so did ours,” said her mother, France Boulay. It was a difficult time for her. “She was cut off from the world. She had to give up her studies and was away from her friends,” added her father, André Fortin.

While Gui-Gabrielle was on dialysis, France underwent medical tests to find out whether she could donate a kidney to her daughter. “I always knew I’d be the one to give her a kidney. It was obvious and unquestionable,” she said. After 20 months of dialysis, Gui-Gabrielle was finally able to receive her mother’s kidney.

The transplant took place on October 7, 2017, and each of their operations went smoothly. The day of the transplant, Gui-Gabrielle could urinate again, a veritable revolution for her. As for her mother, France, she was philosophical about the whole thing. “A lot of people say that what I did led to a rebirth, a second chance,” she said. “I prefer to say that I merely fixed a manufacturing defect. But between you and me, it’s just a mother’s love.”

Gui-Gabrielle is now studying special education in Gaspé, thanks in part to scholarships provided by The Kidney Foundation of Canada. “She now looks to the future with hope and optimism,” said André.

The Boulay Fortin family has been involved with the Gaspé Kidney Walk since the first edition in 2018. Given the resounding success of that Walk, which raised $30,000, André is hoping that at least 300 people will come out for the 2019 edition on September 14 and surpass last year’s figure.

The Kidney Community Newsletter SPRING 2019

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2019

SPECIAL COLLABORATION

EXERCISE GOALS FOR THE CHRONIC KIDNEY DISEASE PATIENT

By Lloyd Mangahas, B Sc. kinesiologist As chronic kidney patients, we might hear this advice from our nephrologist or other health professional, asking us to get moving and be more active. The message is clear; exercise has many potential health benefits for those willing to engage in it.

Being too vague with your goals will lead to failure. A common example of a vague goal is “I want to lose weight”. Success is attainable if the statement is smart and specific. For example, a patient has set himself the following objective: “I want to lose 1 lb every 2 weeks for a total of 3 months. I will accomplish this by eating one tablespoon less per plate/ bowl, and walk 5000 steps minimum each day”.

It is my objective that this article will tackle this common pitfall. What ever renal stage failure you have been assessed, movement is key. Here is how we start: Goals need to be S.M.A.R.T. The acronym S.M.A.R.T. is one way to clarify an objective. Let’s take a closer look at what each letter stands for along with a concrete example: Specific - Be specific and clear. “Start exercising” sounds too general of a goal.

Let’s take an example a 50 year old woman, four months post-transplant, who wants to start exercising again to improve her quality of life. She first needs to identify what kind of exercise she would like to do. She mentions that she would like to go for a walk after meals with her husband. Now, the mode of exercise is specific (WALK) and clear (AFTER MEALS).

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Measurable - Let’s take the example once again of the woman who enjoys walking. She and her trainer have agreed for her to start walking for 10 minutes after her meals, 3 times a day, 5 days a week. Her walking goal is now more measurable with concrete numbers.

Action-oriented; attractive - The activity must be attractive and meaningful for this woman. This can contribute to her motivation and following through on her goal. She mentions that walking is important for her as it will once again allow her to commute more easily to see her daughter on weekends. Her goal has now taken more significant value and importance aside from “just exercise”.

Thus, her exercise of choice of walking is identified as an action-oriented behaviour that can be measured, quantified and easier to follow.

Realistic - The woman’s condition is stable and acceptable enough that it’s achievable for her to start walking more. Eventually, she can upgrade to the following progressions: longer distance mile walk, walking group exercise, walking more frequently such as 5 days per week instead of 3.

Running or CrossFit training in contrast is an activity that she might not be ready for at this stage.

Time based - The goal is set with a clear timeframe, meaning there is a definite start /end time. Without this timeframe, there is no urgency. The woman has now decided that she will begin walking for 10 minutes at a time, 3 times/day, 5 days per week, beginning TOMORROW at 9:30 AM, for a 4-week period until her next appointment with her trainer.

2019

SPECIAL COLLABORATION START YOUR TRAINING PLAN WITH THE KIDNEY WALK Do what you can, start small, progress slowly and re-group when necessary No matter at what stage of the spectrum of kidney disease one finds themselves in, how inactive they’ve been or how difficult one’s attempts in the past have resulted, if this applies to you, allow me to reassure you that it’s alright to feel that way. Renal disease may rob you of normal health and give you many unpleasant symptoms, but I firmly believe that we still have the willpower to control some part of our health by remaining physically active, in however shape or form that may be. As long as your physical capability allows it, it is NEVER too late to start incorporating even a small amount of physical activity into your day.

A short walk may just do it, or perhaps even using the upper body to push or pull objects is your maximum effort. Even some basic stretching as a means of improving flexibility and facilitating movement can go a long way. In some cases, you might need to regress the exercise to accommodate your abilities. It is not a failure if you have to re-start or regroup. Go at your own pace, seek appropriate counsel when needed, and who knows, in the end perhaps the reward of having simple and realistic exercise goals and achieving them may just be worth it in the long run!

Different exercise goals at different stages of Chronic Kidney Disease (CKD) The previous example of walking as modifiable exercise behaviour used to explain S.M.A.R.T. goal setting may seem applicable to healthy individuals in the post-transplant phase, but for the many others who are on dialysis or who are in the beginning stages of CKD, setting exercise goals may be a challenge. Exercise intolerance is well documented in individuals with CKD, especially for those who are being treated with dialysis, and there is no guarantee that all individuals on dialysis will respond to exercise training (Durstine et al, 2009). For these patients, due to the chronic nature of renal disease and the multiple medical problems associated like hypertension and diabetes, the tendency would be to first address these immediate medical needs through doctors, nurses and other allied healthcare professionals, and as a result exercise would only be a secondary priority at this point. Thus, it is understandable that specific exercise prescription may not be the main priority initially for these patients. Although it may be challenging to integrate an exercise program into an already complex and intensive medical schedule, exercise training may provide the only possible chance to increase or at least maintain some functional capacity inpatients living with CKD (Durstine et al, 2009).The main reasons for this would be to counteract the lack of physical activity often associated with this condition, the increased risk for cardiovascular disease, and the ensuing fatigue and muscle weakness that would certainly influence one’s quality of life.

From personal experience, as a pre-transplant patient whose kidney function steadily decreased, I can vividly recall feeling more tired, less energetic and lethargic. My appetite was not what it used to be, some

areas of my skin started getting itchy, and I noticed my extremities began swelling up. Even if I considered myself a very active person prior to my renal disease, my condition deteriorated to the point where I could no longer pursue the same athletic pursuits and active lifestyle that I enjoyed, and I was resigned to accept that my kidney disease took over my daily routine.

But despite my new reality, I did my very best to remain active within my limits. This not only helped me with my physical health but for my emotional and psychological well-being. My exercise routine mostly revolved around commuting to go places and I still benefited from lifting moderately heavy objects to maintain muscle and help my brittle bones. I firmly believe that sometimes the limits that we set for ourselves are only in our minds and that if we somehow found a way to breakdown those mental barriers by giving ourselves small, but achievable and meaningful goals, it can do many wonders for our personal well-being and outlook in life.

Reference: Durstine, J.L. et al. ACSM’s Exercise Management for Persons with Chronic Diseases and Disabilities, 3rd edition. 2009.

Got a question or comment? Do you have an experience or anecdote you would like to share? Any other exercise topic you think might be relevant to cover in the next article? Write me an email at info@coachlloyd.ca and earn a chance to win a free evaluation and training session.

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. Come and meet Lloyd at the Montreal Kidney Walk on June 9.

The Kidney Community Newsletter SPRING 2019

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PATIENT SERVICES

THE FOUNDATION OFFERS A RANGE OF SERVICES FOR PEOPLE LIVING WITH RENAL FAILURE HERE ARE A FEW EXAMPLES Patient guides In 2018, 3,864 “Living with Impaired Kidney Function” and “Living with End-stage Renal Failure” booklets were distributed to new patients throughout Quebec. Available free of charge to new patients, the guides are also available in many languages and in audio format.

Also, over 20 of these guides were distributed as DVDs to dialysis centres across the province.

Scholarship program In 2018, kidney patients received 23 scholarships totalling $16,827.

The Kidney Foundation of Canada’s scholarship program was created to support dialysis patients and kidney transplant recipients in their pursuit of college and university studies.

Summer camp for Quebec’s dialyzed and transplant recipient children In 2018, over 45 children aged 6 to 18 attended the summer camp, which gives kids living with kidney disease and those who’ve had a kidney transplant a chance to have some fun in the sun in a setting specially adapted to their unique needs, swap stories with other kids like themselves and make new, special friendships. It also gives parents some time for themselves with complete peace of mind.

Kidney-Connect Peer Support Program In 2018, over 20 peer-support connections were made. The KidneyConnect Peer Support Program puts kidney patients in touch with

someone who understands the day-to-day challenges of kidney failure and is ready to share his or her experience. We provide program materials to all nephrology social services staff at Quebec’s medical centres and to renal protection clinics and Foundation chapters.

Dreams take flight for Quebec’s young dialysis and transplant patients In 2018, the Quebec Branch of The Kidney Foundation of Canada was again chosen to take part in the Dreams Take Flight activity. Three children from Sainte-Justine Hospital took part on November 7, 2018.

Dreams Take Flight is a non-profit organization run by volunteers from the Air Canada family. Each year, teams from several Canadian cities including Montreal organize a trip that will leave a lifelong impression on a group of deserving children with special physical, mental or social needs. The destination, Disney World in Florida, makes for a truly magical day. The plane tickets are donated by Air Canada, while volunteer employees and retirees take care of the rest. The adventure is funded through events and fundraising activities organized by employees, as well as through corporate donations, sponsorships and various other donations.

Find out about our programs and services For documentation or information on the programs run by the Quebec Branch of the KFOC, visit kidney.ca/quebec or contact Philippe Vincent at 1 800 565-4515, ext. 222, or philippe.vincent@kidney.ca

DONATE YOUR CAR TO THE KIDNEY FOUNDATION: IT MIGHT BE WORTH MORE THAN YOU IMAGINED! However, have you ever considered donating your car to a foundation instead? Thanks to the Kidney Car Program, you can donate your car to The Kidney Foundation of Canada—your car will be towed away for free and you will receive a tax receipt for $300 or more. And if your car qualifies for resale, the value of the tax receipt will match the car’s assessed value at the time you donated it. If your car can’t be resold, it will be recycled in accordance with the industry’s strict environmental standards and you’ll receive a free towing and a tax receipt for $300.

Kidney Car: It doesn’t get any easier!

ROBOVIC DONATED ITS PICK-UP TO THE KIDNEY FOUNDATION

Everyone knows that a car is an expense, not an investment, and the older it gets, the more expensive maintenance becomes. One day, you’ll probably reach the conclusion that you’d be better off not sinking more money into your car, and you might think about scrapping it.

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And when you do donate your car, your very generous donation will enable the Foundation to fulfil its mission of supporting all Canadians living with kidney disease.

To donate your car to the Kidney Car Program, call us today at 1 888 228-8673 or complete the online form at kidneycar.ca

RESEARCH

THREE-YEAR KRESCENT FELLOWSHIP RECIPIENT CAROLE G. CAMPION THANKS THE FOUNDATION FOR ITS SUPPORT Carole G. Campion, PhD, received a KRESCENT postdoctoral fellowship valued at $55,000 for three years (2015–2017). The goal of Carole’s research is to identify mechanisms that could improve renal tissue regeneration, which would constitute an unhoped-for solution not only for endphase renal failure, but also for kidney cancer.

“I am extremely grateful to have been chosen, from among all the other candidates, to take part in the KRESCENT program. Over these past three years, I came to understand that the KRESCENT fellowship was more than a grant: it’s also a mission seeking to generate concrete improvements in patient health and quality of life, which we really must continue to focus on even after the program ends. I’ve understood the impact we all have on patients’ health and the extent to which patients rely on us. In carrying out this basic research, I didn’t come face to face with sick patients. However, thanks to the comments received from patients during the KRESCENT meetings, I became very aware of their reality. This reality must affect us, as we are the ones who can and must act—it’s our primary role. For that reason, I felt that it was vital to tell you that the Foundation impressed its values and mission on me, and

I can assure you that I will continue to cultivate them well beyond the KRESCENT program.

Last January, I started my new job at the Institut national d’excellence en santé et services sociaux (INESSS) in Montreal. My work consists in developing new strategies for optimizing the assessment and implementation of innovative technologies within Quebec’s healthcare system. While I’m sad to have left my life as a lab researcher, I believe I will still be able to have a direct impact on the lives of patients. I plan to make a point of regularly asking myself how my work will improve patients’ health.

My mother-in-law had a kidney transplant in France three years ago (glomerulonephritis). Her husband was her donor. Through her experience, I gained awareness of just how hard these long-term pathological processes—dialysis, the transplant and life after the transplant—are on sick patients and their family and friends. This is particularly true when a family member donates a kidney.

Over these past three years, you’ve not only been role models and mentors to me, but also people whose dedication to healthcare deeply touched me. You have certainly influenced my way of thinking and viewing the world.”

PLANNED GIVING | LEGACY GIVING SOCIETY

WHY I TOOK OUT A LIFE INSURANCE POLICY BENEFITING THE KIDNEY FOUNDATION OF CANADA

By Pierre Jetté

I’ve only been involved with the Foundation since 2018. I haven’t been personally affected by kidney disease, nor has a family member. In that respect, we’re all very lucky. Since I joined the Foundation’s Board of Directors, I’ve met living donors and one transplant recipient.

What I didn’t know when I met her was that she had been on dialysis for a number of years before she could have a transplant. I’m involved with the Foundation because I would like to make a difference by ensuring that its members and employees get a little more recognition for the almost superhuman work they do.

At the Foundation’s 2018 annual meeting, Rémi Gilbert of IG gestion de patrimoine explained how life insurance can be an excellent means of contributing to the Foundation. From that moment on, I was sold on the

idea. You simply take out a life insurance policy with the Foundation as the beneficiary, and because the insurance premiums are considered to be charitable donations, they’re deductible for tax purposes. Over time, the investment within the policy grows in value, so by the time you pass away, the value of the donation will have grown too.

My whole life, I had been looking for some way to leave my mark by making a lasting contribution to society. And that’s what I believe I’ve done by taking out such an insurance policy, which will keep contributing to the work the Foundation does.

If you would like to find out more about taking out life insurance for the Foundation’s benefit, please contact Rémi Gilbert at remi.gilbert@groupeinvestors.com or 450 641-1515.

The Kidney Community Newsletter SPRING 2019

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La Division du Québec de La Fondation canadienne du rein2019

THE QUEBEC BRANCH OF THE KIDNEY FOUNDATION OF CANADA 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5boul. René-Lévesque Ouest 2300, Phone: (514) 938-4515 • 1 800 565-4515 (Québec) H3H 2R5 Fax: (514) 938-4757Montréal • infoquebec@kidney.ca Tél. : (514) 938-4515 • 1 800 565-4515 www.kidney.ca/quebec

Téléc. : (514) 938-4757 • infoquebec@rein.ca

HOW TO HELP

www.rein.ca/quebec

 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 Je souhaite devenir membre de la Division du Québec de Foundation may communicate with you and, at any time, you may terminate your membership on simple notice to La Fondation canadienne du rein the Foundation.

2015

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 1 yearle$10 years $20 Santé • Soyez informés de nos activités • Recevez Bulletinet2 le Cahier Nom I would like to make a donation at The Kidney Foundation of Canada, Quebec Branch Adresse  $20  $35  $50  $100  Other amount Ville Code postal Full name Oui, je suis âgé(e) d’au moins 18 ans et je veux devenir membre La Fondation canadienne du rein.

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