Kidney Link spring 2015

Kidney Link Spring 2015

The Kidney Foundation of Canada – Quebec Branch

Used auto parts

On May 24, the Kidney Walk will be held in 18 cities across Quebec The annual Kidney Walk is set to take place in 18 cities across Quebec on May 24.

The goal of the Walk is to raise public awareness of kidney disease and the importance of organ donation. It’s a chance for dialysis patients, transplant recipients, families of donors, living donors, the medical community and the general public to support advances in kidney health and promote organ donation.

Read personal accounts by the volunteers, dialysis patients, transplant recipients and teams taking part in this year’s Walk.

More on page 4

the program that completely recycles your car Would you like to donate your vehicle to the Foundation’s Kidney Car program? Do you want to know what happens to your car once you’ve donated it? Go behind the scenes with our partner, Kenny U-Pull, and find out the steps they have to follow to recycle your vehicle in compliance with all applicable environmental standards.

More on page 6 Message from the Executive Director and the President .... 2

Meet our volunteers .................................................. 8

Patient Services ......................................................... 3

Organ Donation ........................................................ 10

The 2015 Kidney Walk ................................................ 4

Research ................................................................... 11

News from the Chapters ............................................ 7

To become a Member | Make a donation .................. 12

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Message from the President and the Executive Director A Pivotal Year

Dear readers: You can 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.

Our 50th anniversary year was a pivotal year in many regards. We pointed out the major strides accomplished in terms of research and treatments over the last 50 years. We also highlighted the fantastic contribution of the volunteers who built our Foundation and helped advance the cause of people with kidney failure. We set up strategies to increase kidney transplantation, focusing in particular on living donation. We began an analysis of the issues facing dialysis in Quebec to ensure better access to dialysis treatment that better meets the needs of patients.

the best possible conditions. That’s why the Quebec Branch has set up a working group made up of patients and health professionals to clearly define the issues surrounding dialysis in Quebec, determine what improvements to make and convince decision-makers to implement them. The committee began its work in spring 2014. It will hold consultations and draft a report to this effect in 2015. The Foundation was also active in the media and with decision-makers to defend the interests of patients of the McGill University Health Centre (MUHC), who are in a state of uncertainty about the future of their vital dialysis care with the closing of the Royal Victoria Hospital and the move to the new MUHC.

COORDINATION AND WRITING Antoine Ardiley

In 2015, we also realized that we needed to review our main funding strategies. We had some amazing successes, but also some setbacks.

Fundraising

GRAPHICS AND PUBLISHING Ardecom PRODUCTION Ardecom 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 Kidney Link newsletter is published three times a year by the Quebec Branch of The Kidney Foundation of Canada. Distributed in English and French to people suffering from kidney failure, the newsletter provides valuable i n formation on the Foundation’s services and activities, including the latest findings on kidney disease and organ donation.

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

Moving? Please let us know at infoquebec@kidney.ca.

Articles may be reproduced provided that proper credit is given.

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Kidney Link • Spring 2015

50th anniversary

One in 14 Quebecers affected by kidney failure The incidence of kidney disease is unknown and may well be underestimated. We have often unintentionally contributed to this ignorance by publishing data about the incidence of the disease that were limited to people in pre-dialysis and dialysis and transplant recipients. We now know, thanks to data collected by Dr. François Madore and published in the Cartagène study, that one in 14 Quebecers, or 550,000 people, have reduced kidney function. Some 470,000 among them are unaware of it because they have no symptoms. Their ignorance of their condition prevents them from making sound decisions to maintain their renal capacity. That’s why we’ve made a shift in our messages in 2015 to get this important data out there.

We’ve also realigned our awareness-raising strategies by launching an online risk assessment tool for the general public: kidney.ca/risk-assessment. We’re aware that we don’t have the financial ability to screen these 550,000 people, so we’ve focused our kidney health clinic on at-risk clients.

We are particularly proud to have set up our first clinics serving the Native population through a partnership with the Montreal Native Friendship Centre.

Organ donation Our campaign to increase kidney transplantation in Quebec was in its third year, and we are starting to reap the benefits, especially in terms of living donation. During a meeting of representatives of the Foundation, Dr. Louis Couture, assistant deputy to the Minister of Health and Social Services, asked Dr. Michel R. Pâquet, chairman of the Foundation’s Provincial Organ and Tissue Donation Committee, to write a report on the strategies that helped the Centre hospitalier de l’Université de Montréal (CHUM) double the number of kidney transplants performed from living donors. In December, this report was submitted to Dr. Couture, who intends to use it to increase the number of kidney transplants from living donors in transplant centres across Quebec.

We are also especially proud of the launch of the website www.donatingakidney.ca, which gives potential donors more information about the living donation process. It’s also a tool that helps people waiting for a kidney transplant to consider this option and talk about it to the people around them.

Dialysis For many people with kidney failure, dialysis is a necessary step on the way to a transplant, while for others it is the only therapy that allows them to survive kidney disease.

Therefore, this vital therapy needs to be made available in

The year 2014 was a year of change for our funding development strategies. As is the case with other Quebec charities, the Foundation felt the impacts of the economic crisis of fall 2008, which led to a worldwide drop in philanthropy. According to the firm Épisode, charitable donations in Quebec fell from $3 billion in 2007 to $2.6 billion in 2013. In this context, the Quebec Branch made major changes to its main fundraising strategies.

We were forced to cancel two funding activities in 2014, the Founder’s Award Gala Montreal and the golf tournament in the Outaouais Chapter. The two cancellations resulted in a net loss of over $50,000.

Improvements to the Walks increased revenue by over $100,000 in 2014. We will continue developing them in 2015 and 2016. Improvements to the annual Campaign Cabinet boosted donations by 25%, mainly due to one large donation. We will continue developing the Campaign Cabinet over the coming years.

The Kidney Car program suffered in 2014 when the Quebec government suspended its vehicle recycling program and competition increased, leading to an $80,000 drop in revenues. These upheavals led us to implement major changes to the program in early 2015. We’ve already seen very promising growth.

While 2014 was an especially difficult year, with a $107,000 operating deficit, the changes we made in 2014 gave us hope that in the future we’ll have the financial capacity to carry out our important mission.

The new South Shore Chapter We’ll end with some excellent news: in 2014, our Branch welcomed the new Montreal South Shore Chapter. After organizing its first, overwhelmingly successful Walk, a dynamic team of volunteers primarily made up of health professionals, patients and family caregivers from the dialysis unit at Hôpital Charles Lemoyne, headed up by Dr. Olivier Diec, set up the Chapter to join the Kidney Foundation of Canada.

With their support, our Foundation is now stronger and will better be able to carry out Simon Brodeur Martin Munger its important mission President of the Executive Director in Quebec.

Kidney Foundation of the Kidney

Together we can make a difference

of Canada’s Quebec Branch

Foundation of Canada’s Quebec Branch

Patient Services – Scholarships To find out if you’re eligible for Foundation scholarships, please contact Hélène Boisvert at (514) 938-4515, ext. 224, or 1 800-565-4515 or helene.boisvert@kidney.ca

Scholarships: invaluable help for patients with kidney disease The Kidney Foundation can offer financial aid to Canadian residents suffering from kidney disease. This includes scholarship programs for nephrology patients wishing to continue their studies and/or college and university education.

Andrée-Anne Sylvain, who holds a BA in teaching, and Lauréanne Rocchio, a future veterinarian, both received scholarships from the Foundation to continue their studies despite the limitations caused by their disease. They share their accounts.

Andrée-Anne Sylvain, teacher In December 2003, when I was 18, I went to emergency at the hospital on the recommendation of an optometrist because I was losing my eyesight. I figured I’d wait a few hours, get a prescription for antibiotic drops and everything would be back to normal. Never had I imagined for a second that my life would change forever. They ended up diagnosing me with terminal kidney failure, the result of asymptomatic hypertension. After completely destroying my kidneys, the hypertension was attacking my optic nerves. I had to start hemodialysis treatments right away.

The whole time I was in the hospital, my goal was to be released in time to start CEGEP when everyone else did.

School had always been very important to me, and my dream was to become a teacher, so there was no way I was going to let the disease win and postpone my schooling! After three weeks in the hospital, including time in intensive care, my bet paid off: I got out of the hospital on a Saturday and started school full time on the Monday along with the rest of the students.

I managed to finish my CEGEP in the allotted time and start university while going out three evenings a week for my hemodialysis treatments.

Throughout the process, and even after my transplant, I was lucky to be able to count on the support of the Kidney Foundation of Canada thanks to the scholarships they award every year. Their support was greatly appreciated and contributed to my academic success.

That’s why I’d like to thank the Foundation for helping me get my BA in teaching.

Thanks for helping me fulfill my dream!

Lauréanne Rocchio, future veterinarian In fall 2000, when I was 10, I was admitted to the hospital because I had severe edema in my legs. After seven weeks in the hospital, I got the diagnosis: idiopathic glomerulonephritis. I’d eventually need a kidney.

In 2002, as I was starting high school and after several months of peritoneal dialysis, my mother donated one of her kidneys to me. The surgery went very well, but not too long afterward complications set in. In all, I had to deal with 10 years of intense medical problems. Despite all the surgeries, injections and hospital stays, I made every effort to live my life as normally as possible, both socially and academically.

The Kidney Foundation of Canada added a silver lining to all these clouds by offering me scholarships the whole time I was in school. I’m now proud of reaching my goal of becoming a veterinarian. The scholarships definitely helped me get my degree since they allowed me to study without having to work too much along with my extremely busy course schedule.

I’d like to sincerely thank the Foundation for its constant support over those years.

A Dance-a-thon to benefit the Foundation Veronica Rojas organized a Dance-a-thon at her school to benefit the Foundation.

She handed over a cheque for $529.62 to Martin Munger, Executive Director of the Foundation’s Quebec Branch.

We thank Veronica for this great initiative.

Would you like to organize an event?

Tell us about your projects

Kidney Link • Spring 2015

Your donation goes a long way at The Kidney Foundation

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The Kidney Walk will be held in 18 cities across Quebec To register: visit kidney.ca/quebecwalk

Brossard • Dollard-des-Ormeaux Gatineau • Joliette • Maniwaki Montreal • Quebec City Repentigny (Sud-lanaudoise) • Rouyn-Noranda • Saguenay • Saint-Georges de Beauce Saint-Jean-sur-Richelieu Saint-Jérôme • Sherbrooke • Sorel-Tracy Trois-Rivières • Val d’Or As well as the Tour de rein, an 80-km cycling event, and a Walk to be held in Laval on May 23 We thank Kenny U-Pull for their support to the Walk.

Come out and walk the Walk Quebec City

Maniwaki Several fundraising activities took place in Maniwaki in 2014 for that year’s Kidney Walk: Several fundraising activities took place in Maniwaki in 2014 for that year’s Kidney Walk:

Marius Dionne will walk on May 24 in Quebec City with his team Go Dionne Go, made up of his family and friends.

Conrad Legault, Honorary President of the Maniwaki Walk

• An activity at the Métro supermarket raised close to $400.

•A spaghetti dinner at Le Rabaska restaurant that drew 100 people raised over $700 to benefit the Foundation. Another spaghetti dinner will be organized soon for this year’s Walk.

•An activity at the Gatineau Value Village raised close to $600.

Having received a transplant nine years ago at the Hôtel Dieu de Québec after two years of peritoneal dialysis, Marius now wants to pay it forward.

Why will he be walking on May 24?

He wants to promote organ donation, increase the Foundation’s visibility and raise funds for the patient services financed by the Foundation.

“My team and I raise around $2,000 in donations every year for the Walk,”

says Marius, who has never missed a Walk since the beginning.

“The important thing is to talk about organ donation,” he says. According to him, there needs to be more organ donation because it considerably i m p r o v e s lives. Right before his transplant, he was very low in energy and his creatinine level was very high despite his dialysis treatment.

“It was like two different worlds: during dialysis and after the transplant,” recalls Marius, who urges everyone to sign their health insurance card showing their consent to donating their organs.

Marius and his team encourage you to come out on May 24 to walk for everyone dealing with kidney disease.

•During the 2014 Walk in Maniwaki, a hot-dog lunch raised over $200.

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•Sponsorships by Marché k-z, Giant Tiger and Tim Horton brought in profits of close to $1,900 for the year 2014.

All the funds raised from these activities and sponsorships, close to $4,000, will be added to the funds raised by this year’s Maniwaki Walk to reach the goal of $12,000.

Conrad Legault invites you to the Cité Étudiante de la Haute-Gatineau in Maniwaki on May 24 to walk for people suffering from kidney disease.

Kidney Link • Spring 2015

Marius Dionne and his team Go Dionne Go at the Quebec City Kidney Walk

Together we can make a difference

The Kidney Walk | May 24, 2015 Montreal For over five years, the team from IGA Extra Langelier has been involved in the Montreal Walk thanks to Pascale Bernard and Pierre Guy. Over the years, the dynamic involvement of the volunteers from IGA Extra Langelier has helped raise close to $20,000.

and taking care of your kidneys! I thank all the employees and customers who’ve supported this cause over the last few years. I urge all my co-workers from IGA outlets all across Quebec to throw their support behind the Kidney Walk to be held on May 24.”

It should be pointed out that this activity is the initiative of Pascale Bernard, who feels that kidney health and organ donation are important causes. “My husband went through some difficult times because of the disease and, fortunately, received a kidney transplant in 2011. He’s now doing very well, and I’m conscious that we need to raise public awareness of the importance of donating organs

Every year for the last five years, Pascale Bernard has mobilized her troops starting in March so that, during Organ Donation Week in April, all store employees can take part in fundraising by wearing the Kidney Walk t-shirt. In 2014, a sponsorship from Sobey’s rewarded their efforts and helped provide snacks to Walk participants in 16 cities across Quebec.

IGA Extra Langelier

Gatineau Monique Jacques takes part every year in the Gatineau Kidney Walk. Last year, she brought 15 members of her family onto Team Jacques to walk in memory of her late husband Laval Jacques.

Laval Jacques, who had a kidney transplant 15 years ago, died in 2002 of cancer. He had polycystic kidney disease, a hereditary disease that his father also suffered from and died of.

Monique and her husband Laval were among the founders of the Foundation’s Gatineau Chapter in the ’90s, notably by getting involved in the Aimé-Charron golf tournament.

“I want to encourage research. Back in my husband’s father’s time, there was no research or dialysis, so we need to make sure research continues. It’s indispensable,” says Mrs. Jacques.

Team Jacques at last year’s Gatineau Walk

To build her team, Mrs. Jacques called on her family. She took the opportunity of

her grandson Rémi’s birthday, which falls on the same weekend as the Walk, to gather her whole family and walk for people suffering from kidney disease.

Every year, her grandson has lots of fun walking the 13 loops of the track needed to complete the 5-km Walk. For motivation, he holds onto 13 peas at the start and drops them one by one each time he finishes a loop.

For this year’s Walk, Monique Jacques hopes to bring 30 people onto her team by urging her friends to join her on the day of the Walk. Many of them have already confirmed they’ll be there, and she’s pretty sure she’ll achieve her goal between now and May 24.

On May 24, build your team and walk with us Here are a few simple ways to raise funds for the Walk:

❶ Sign up online at kidney.ca/quebecwalk You can solicit individual donations among your friends, family, co-workers and anyone else you know. There’s no minimum fundraising amount, but last year each walker collected $250 on average.

❷ Form a team of two, three or more people · Also encourage the members of your team (which could be a pair, threesome, family, group of supporters, etc.) to use simple and effective methods to reach the set goal.

By expressing yourself, you get people involved in The Kidney Foundation cause that is so dear to you.

❸ Organize a special activity You can also organize a party or special activity and add the donations collected to your personal goal in the Walk.

· The important thing is to say clearly why you want to be at this year’s Walk.

Kidney Link • Spring 2015

Your donation goes a long way at The Kidney Foundation

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KIDNEY.CA/QUEBECWALK Montreal

Dialysis: the realities of a confining treatment Dialysis treatment becomes unavoidable when kidney function falls below 15%.

That’s the case for Philippe Ouaknine, who has been dealing with this reality for the last four years.

At the age of 30, Philippe Ouaknine developed glomerulonephritis, which forced him to undergo dialysis treatment.

The first six months of his treatment took place at home, where he underwent peritoneal dialysis. At first, he was without a machine for two months and had to do the exchanges manually every four hours. He couldn’t go out for more than 2½ hours at a time, and so was isolated at home. Then, using the machine, Philippe developed severe cramps in his abdomen.

During the day, two kilos of fluid would flood his abdomen, making him feel constantly bloated. After six months of peritoneal dialysis, the filtration wasn’t good enough and he had to start hemodialysis at the hospital from one day to the next.

“It’s a shock starting dialysis from one day to the next,” says Philippe, who didn’t go to the pre-dialysis clinic to start dialysis in the proper conditions.

“When I first started hemodialysis at the hospital, I felt like a car in a garage that gets repaired and then starts up again,” says Philippe, who felt alone and abandoned at first.

Main sponsor of the 2015 Walk Used auto parts

He needed two years to adapt to hemodialysis before he found his rhythm. He realized that he felt more comfortable getting his dialysis in the evening. He prefers this rhythm because dialysis during the day makes him extremely tired for the rest of the day. Yet dialysis in the evening doesn’t prevent him from being tired the next day because the treatment drains all his energy.

“When I get out of dialysis, my muscles are like cardboard pulp, and my legs are especially tired. My mind also works differently. I take everything literally. It’s weird, I have trouble getting irony and sarcasm,” says Philippe.

Philippe is currently waiting for a kidney transplant. He and a friend are entered in the Living Donor Paired Exchange (LDPE) program.

He keeps a blog (hypertendu.blogspot.ca) where he shares his experiences of dialysis and daily life.

Philippe encourages all dialysis patients to join the Kidney Walk on May 24.

Living Donor Paired Exchange (LDPE) registry People who are unable to donate a kidney to a friend or family member suffering from terminal kidney failure due to incompatibility can now do an exchange with another donor/recipient pair.

Kenny U-Pull: from vehicle donation to recycling When you donate your vehicle to the Foundation as part of the Kidney Car program, we guarantee that it will be completely recycled and will not end up back on the road. Our partner, Kenny U-Pull recycler, must follow several important steps to make sure your car is recycled in compliance with all environmental standards.

Here are the steps in the recycling process of your car: 1. The call centre receives a call about a donation.

2. A truck is sent to tow the vehicle for free (it can also be brought to the recycler by the donor).

3. The vehicle is received by the recycler.

4. The vehicle is identified.

5. The vehicle is inspected to identify potential leaks.

Yves Morin is in charge of parking cars in the lot at Kenny U-Pull recycler

Donate your car to the Foundation.

7. The vehicle is parked in the recycler’s lot to be sold for discount parts.

You’ll get it towed for free and receive a tax receipt for $300.

8. Once all the reusable parts have been sold, the stripped-down vehicle is crushed to make it easier to transport to recycling facilities.

Fill out the form online at kidneycar.ca or call 1-888-228-8673.

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6. The oil, gas, brake fluid, freon and antifreeze are removed from the car and salvaged according to regulations. Hazardous materials, including batteries, mercury and sodium azide (from the airbags), are salvaged.

Kidney Link • Spring 2015

9. The metal is recycled.

10. The metal from the vehicle has now completely returned to its initial form and is ready to be used for new production.

We're behind you all the way

News from the Chapters Abitibi-Témiscamingue

The Abitibi Door-to-Door Campaign Celebrates its 10th Anniversary From March 29 to April 12, close to a hundred volunteers knocked on doors on the streets of La Sarre and the 24 municipalities of Abitibi-Ouest to collect donations. The campaign wrapped up with a healthy brunch in Dupuy.

The region’s stores and businesses showed great generosity. For the 10th anniversary of the Abitibi doorto-door campaign, the goal was to collect $48,000, and donors were given the possibility of donating online. The Chapter’s volunteers worked hard to make the event a resounding success.

Over the same period in Ville-Marie, volunteers also

walked the streets to collect donations. The team was headed up by honorary president Louise Plasse, a recent transplant recipient.

It took a lot of pressure, but Ville-Marie finally got a dialysis centre. That’s good news for kidney failure patients in Témiscaminque, who now don’t have to travel as far to get treatment. However, many patients, including three from the village of Winneway, still have to drive for an hour in all kinds of weather to get dialysis in Ville-Marie.

The donations collected will help improve the lives of people suffering from kidney failure.

South Shore

The South Shore Chapter’s mascot is unveiled on a day to raise awareness of organ donation at Collège Édouard Montpetit Humour was the order of the day at an activity to raise awareness of organ donation at Collège Édouard Montpetit on February 18. For her first official appearance, the South Shore Chapter’s mascot decked herself out to attract the college’s students, teachers and support staff to the Foundation’s South Shore Chapter information booth during the break between classes.

at Collège Édouard Montpetit and the South Shore Chapter. This activity was the second in a series that the South Shore Chapter intends to hold throughout the year. The first activity took place in November at Certex, a Brossard company committed to social integration that specializes in

recycling fabric and clothing. The Chapter will set up in the lobby of Hôpital Charles LeMoyne during Organ Donation Week (April 19 to 26) to continue raising awareness of organ donation.

If you want to hold an activity like this at your business, please let us know.

Also on hand were members of the South Shore Chapter, who answered questions from people interested in the Foundation’s work while promoting organ donation. Information brochures about the Foundation were h anded o ut an d ever yone w as e n couraged to sign their health insurance cards to show their consent to organ donation when they die.

Interested people could fill in the sticker on site and affix it to the back of their health insurance card.

The event was made possible through a partnership between student services

The lovely Lady Kidney, mascot of the South Shore Chapter

The foundation of kidney care

Kidney Link • Spring 2015

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Meet our volunteers Danye Tremblay, a very active volunteer in Saguenay Danye Tremblay lives in La Baie. She suffers from polycystic kidney disease, which has forced her to undergo hemodialysis treatments three times a week since 2009. She inherited the disease from her mother. While she has had to learn to deal with her disease, she never lets her circumstances get her down.

She is currently awaiting a kidney. That’s why she would like to raise public awareness of the benefits of organ donation and encourage people to sign their health insurance card.

Now she wants to give back by organizing a spaghetti dinner to benefit the Foundation.

She will be at the Saguenay Walk on May 24 and encourages the entire local community to come out and walk with her to support people living with kidney disease.

Polycystic kidney disease (PKD) is a hereditary disease characterized by the development of multiple, fluid-filled cysts on the kidneys. The cysts, of variable size and number, can reduce the kidneys’ ability to function normally. Kidney failure could set in if the cysts become large and numerous.

A committed volunteer Danye Tremblay

Saguenay $3,128 raised during a spaghetti dinner in La Baie On June 28, 2014, a spaghetti dinner was held at the Moose Lodge in La Baie, drawing 150 people and raising $3,128 to benefit the Kidney Foundation.

The dinner was organized by Danye Tremblay, a dialysis patient since 2009 and volunteer for the Foundation, and the sold-out evening was a big success. Michel-Luc Gagnon handled the musical stylings while people delivered their personal accounts. Sister Esther Gaudreault’s was a highlight since she was one of the first dieticians to begin her career with Dr. Well in 1967.

Several door prizes were handed out during the course of the evening. The spaghetti dinner will be held again next fall. Everyone’s welcome – bring all your friends.

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Danye Tremblay with the $3,128 cheque to benefit the Foundation Kidney Link • Spring 2015

Thank you, Ms. Tremblay for this wonderful initiative.

Together we can make a difference

Meet our volunteers Maude Schneider, a transplant athlete living her dreams In Quebec, some 1,000 people are currently awaiting a kidney transplant. It’s a statistic very few people know about, despite the number of lives donated organs save each year, including Maude Schneider’s, who received a kidney transplant in 2008 and has since won two gold medals at the World Transplant Games. A Foundation volunteer, she helps facilitate organ donation awareness booths.

Maude Schneider was born with Vater syndrome, a constellation of birth defects that primarily affect the digestive system. While most people are born with two kidneys, Maude was born with one, and it only worked at 60%. Despite undergoing 50 surgeries, Maude never let her condition curb her active lifestyle. A high-level athlete at 14, Maude continued to pursue her favourite sport, snowboarding, in spite of her illness.

“Before my transplant, I competed against people who had no illnesses, no limitations, and my goal was always to finish first regardless of my physical condition. It’s the way I approached life, it’s what made sense to me,” mentions Maude.

“Sport saved me, and continues to save me to this day.”

Maude was hooked up to a dialysis machine at the Saint-Jérôme hospital for three years. She had prepared herself mentally for dialysis, but when the moment arrived, it still came as a shock.

“When the doctor said: Maude, you start dialysis on Monday, I was taken aback, the sword of Damocles had dropped,” admits Maude.

She stayed in school and continued snowboarding competitively but only in Quebec. No longer able to travel, she went through one of the roughest periods of her life. She had to wait a year for a spot on the waiting list for a kidney transplant.

“I had numerous surgeries because of my Vater syndrome, so the trans- Maude Schneider plantation process was not a straightforward one for me. I had to undergo several tests to determine whether or not a graft could be implanted,” says Maude.

A kidney transplant is a surgical procedure performed regularly. It is nevertheless a major operation that could involve complications. Maude developed post transplant pyelonephritis, a kidney infection that kept her hospitalized for one month. Her body rejected the graft and she admits being afraid she would lose her new kidney.

“The Notre Dame hospital’s transplant team was constantly there to help and reassure me, because you need to hear it’s going to be okay, you need that support, it’s all a mystery to you, but the team knows what’s going on, and at some point you need to put your faith in them, and that trust is immensely important,” acknowledges Maude.

One in 14 Quebecers suffers from chronic kidney failure. Kidney disease can affect anyone bar none.

“Kidney disease is a silent condition. It is an insidious illness that often leads to high blood pressure, which can then trigger renal failure.”

Maude is a Kidney Foundation volunteer. She is currently working on a presentation on organ donation intended for the licensed practical nurses of the Sommets vocational training centre in Sainte-Agathe-des-Monts.

Maude with her World Transplant Games gold medal.

Kidney Link • Spring 2015

Your donation goes a long way at The Kidney Foundation

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Organ donation New weapons for transplants Some 2,200 organ transplants were performed in Canada in 2012, including 264 in Quebec, thus increasing the chances of survival for many. Nevertheless transplantation still faces a major obstacle: the possibility of the recipient’s immune system rejecting the transplanted organ. Cyclosporine – the main go-to anti-rejection drug for the last 35 years -- is one way of overcoming this hurdle.

Combined with other medication, it suppresses the recipient’s immune system’s response to a new organ. But it is a demanding therapy that spans the recipient’s lifetime, damages the kidneys and increases the risk of certain cancers and infections.

How can we put this post transplant issue behind us? What progress have we made with stem cells and bone marrow transplants? How can research improve the quality of donated organs? How can patients help us achieve higher transplant success rates? These questions were raised at a Café Scientifique of the Canadian Institutes of Health Research (CIHR) held on January 16 and attended by Drs. Marie-Josée Hébert, Steven Paraskevas and Michel Carrier, as well as lung-liver transplant recipient Alexandre Grégoire. The meeting, which was moderated by science and medical reporter Michel Rochon, addressed the advances and challenges of organ donation and research.

especially on the regenerative medicine front or the use of biomarkers capable of predicting whether a recipient will reject the transplanted organ. But it’s still too early to say whether these new approaches will yield treatments for human application. Not for another 10 or 20 years in any case!

Offsetting the shortage of organ donations After rejection, transplant specialists also have to grapple with another major concern: the shortage of donated organs. According to the experts invited to the Café Scientifique, there are an average of 17 donors per million inhabitants in the province, which is way below Spain’s average, which is the highest in the world at 35 donors per million inhabitants.

“Quebec experienced an increase in donors in 2013 and 2014, which made over 500 transplants possible,” indicates heart transplant surgeon Michel Carrier. Up significantly, but still not enough to bridge the gap between the number of available grafts and the patients who need them.

Over 4,000 Canadians are on a waiting list for a transplant.

Another solution to offset the shortage of organ donations: living donors. “The practices related to donated organs harvested Dr. Marie-Josée Hébert from living donors vary considerably from “In the coming years, we hope to use fewer immunosup- country to country and even from province to province,” pressant drugs and develop new treatment methods in the points out Dr. Steven Paraskevas, a transplant surgeon hope of doing away with lifetime drug therapies,” explained with the McGill University Health Centre, who observed Marie-Josée Hébert, co-director of the Canadian National that the fewer cadaveric donors there are, the higher the Transplant Research Program (CNTRP) and holder of the number of organs from living donors. It’s the situation in Shire Chair in Nephrology and Renal Transplantation and Canada, where the national average is 15.6 living donors Regeneration at Université de Montréal. She was alluding per million inhabitants, while in Quebec the average drops to what is essentially the ultimate end game in the quest to 7 living donors per million inhabitants. for anti-rejection: a treatment that would trick the Source: Dominique Nancy, Journal Forum, Université de body into believing the transplanted organ is not foreign.

Montréal There is abundant research teeming with new weapons, Organ donations in Quebec according to the latest figures*: ●

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1,073 patients on the waiting list for a transplant, with 808 (75%) waiting specifically for a kidney transplant;

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39 patients died while waiting for an organ;

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The average wait period for a kidney transplant is 775 days;

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The oldest kidney donor was 85. * Transplant Québec (2014 figures)

251 kidneys transplanted;

To learn more about living donations, visit donatingakidney.ca, the Kidney Foundation’s microsite dedicated exclusively to living donations.

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Kidney Link • Spring 2015

Together we can make a difference

Research TRANSPLANT-TAVIE A virtual intervention program to help transplant recipients manage their post-transplant care TRANSPLANT-TAVIE™, an offshoot of the VIH-TAVIE program, is set to offer transplant patients virtual interventions tailored to their post-operative immunosuppressive drug therapy. The intervention consists of four interactive sessions of 20 to 30 minutes each, via computer, aimed at helping users develop self-management skills with regard to their drug intake in order to enhance their ability to take charge of their health condition. The sessions teach users how to integrate their drug therapy into their daily routine, how to manage the side effects and adverse situations stemming from their drug intake, how to interact with health professionals and how to strengthen their social relations. The idea is to develop motivational and self-awareness skills (session 1), followed by problem solving and emotional management skills (session 2), and finally social skills (session 3). The 4th session focuses on consolidating all of the newly acquired skills.

The major challenge for allogeneic transplant recipients is managing their daily immunosuppressive drug intake over the span of several years, even decades. Taking the drugs exactly as prescribed is essential to the longterm success of the transplant (Denhaerynck et al., 2005; Takemoto, Port, Claas, & Duquesnoy, 2004).

Unfortunately, according to a meta-analysis by Dew et al. (2007), 19 to 25 out of 100 patients per year fail to adhere to their treatment. For kidney transplants, the rate is 36 out of 100 patients per year.

TRANSPLANT-TAVIE™ will be in the form of short video clips, texts, animated graphics and consolidation tools (e.g. log of adverse effects). The virtual intervention program is currently being developed by a team of researchers and health professionals (e.g. nurses, pharmacist, doctor) with the support of a team of media and IT specialists (media consultant, graphic designer, etc.).

Source: CHUM research centre

Legacy donations Legacy donations continue to be one the simplest and most accessible means of planned giving.

There are numerous options, including: • Specific legacy (a specific amount or a particular item); • Residual legacy (all or a percentage of what is left of your assets after all your debts and specific legacies have been fulfilled); • Universal legacy (your total assets, sometimes divided among several beneficiaries); • Designating the Foundation as the beneficiary of a retirement savings plan, a pension fund or a life insurance policy.

Tax benefits for your estate An estate encompasses all of the assets a deceased person transfers to their heirs. Upon death, the following assets are taxable: income earned during the year, RRSPs and RRIFs (unless transferred to a spouse), capital gains and gains from the sale of a property other than your principal residence. Legacy donations entitle the donor to a tax receipt to be included with their income tax return, after their death. The tax benefits associated with legacy donations might therefore reduce the donor’s income tax payable.

Research conference As part of its Annual General Meeting, the Quebec Branch of the Kidney Foundation of Canada will be organizing a free medical conference hosted by Dr. Véronique Bienvenue.

When : Sunday, May 3, 2015 at 10 a.m.

Where : Manoir Saint-Sauveur 246 chemin du Lac Millette, Saint-Sauveur Topic : Home hemodialysis

Dr. Véronique Bienvenue

• The different types of home hemodialysis • The epidemiology and costs of home hemodialysis • The benefits of intensive hemodialysis Registration required.

Please call Philippe Vincent at 514 938-4515 ext. 222 or at 1 800 565-4515.

The Kidney Foundation of Canada supports this initiative.

Kidney Link • Spring 2015

Your donation goes a long way at The Kidney Foundation

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Quebec Branch of The Kidney Foundation of Canada 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5 Tel.: 514-938-4515 • 1 800 565-4515 Fax: 514-938-4757 • infoquebec@kidney.ca

www.kidney.ca/quebec

2015

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