the kidney link - spring 2013

Kidney LinkSpring 2013 The Kidney Foundation of Canada – Quebec Branch

The foundation of kidney care

Your HealthYour Health Kidney transplantation and itspsychological effects on patients

Message from the Executive Director and the President ... 2

The Kidney Walk........................................................... 3

Patient Services............................................................ 7

News from the Chapters .............................................. 8

Organ Donation ........................................................... 9

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

Early this spring, the Quebec Branch of The KidneyFoundation of Canada made its Facebook debut,launching a page featuring local information, news,activities and events related to theQuebec Branch and its chapters. Visitand “Like” the Foundation at

facebook.com/reinquebec

The QuebecBranch now onFacebook

Well-known Foundation volunteer Michel Perronreceived his kidney transplant on April 7, 1993,thanks to a living donation from his son Henri,and only one year later, set out on a trek tothe North Pole. The Foundation highlights thismilestone.

More on page 10

Michel Perron marks the 20thanniversary of his transplant

Doctors at the CHUM Research Centre (CRCHUM)have discovered a new cause of rejection in somekidney transplant recipients. More on page 11

Hope for transplant recipients

The Kidney Walk will take place in 10 cities acrossQuebec on May 26, 2013. Read the testimonials ofpeople whose lives have been impacted directly orindirectly by kidney disease. Their words, whichrecount unique stories of the realities of kidney diseaseand transplants, speak volumes about the importanceof supporting the Foundation. More on page 3

The Kidney Walk of The Kidney Foundation

On May 26, we are counting on you!

Together we can make a difference

One year into the implementation of our strategic planIn 2012, the Quebec Branch of The Kidney Foundation of Canada launched a new strategic plan, and in the wakeof the launch, the Branch’s volunteers and staff went straight to work on the task of lessening kidney disease’sburden on society..

Grabbing the spotlightBringing kidney health to the forefrontThere’s no hiding it: the public knows too little about kidney failure. If we ever hope to garner the support ofthe public, donors and government in order to improve treatments and patients’ quality of life, this situation willneed to change.

In the past year, we have claimed a greater media presence. We have fostered journalists’ interest in our plightand helped get feature articles on organ donation published in newspapers. The issues surrounding kidneyhealth also received better coverage in the regional media.

In addition to the traditional platforms, we made greater use of the Web and online media, which includedlaunching our e-newsletter in the spring of 2012 and a Facebook page for the Quebec Branch.

Increasing the number of kidney transplantsThe Organ and Tissue Donation Committee launched a major campaign to persuade the Government ofQuebec to adopt several measures aimed at increasing the number of kidney transplants performed each year to350 from the current 250. The Foundation sponsored an economic report demonstrating the relative benefitskidney transplantation has over dialysis. We were supported by a number of organizations and associations andexpect to meet with the Minister of Health and Social Services, Dr. Réjean Hébert, in the near future to presenthim with a series of proposals for promoting both living- and deceased-donor kidney transplants.

Continuously improving patient servicesAlways seeking to enhance the services we provide, the Foundation recently conducted a survey of 7,000 patientsand Kidney Link newsletter subscribers. Based on the results, the volunteers and staff responsible for deliveringpatient services will take the corrective measures needed to ensure that services better respond to patient needsand that the people we serve are more aware of these services’ existence.

Bolstering our regional presence during Kidney Health MonthMarch is Kidney Health Month. Five Quebec chapters of The Kidney Foundation of Canada highlighted this specialmonth by holding screening clinics in Trois-Rivières, Quebec City, Sherbrooke, Gatineau and Montreal in a bidto catch the early warning signs of kidney disease among local residents. The hundreds of people who visitedour mobile kidney health centres met with nurses to have their blood pressure and glucose level measured andwere given information on preventing kidney disease.

Yielding results through researchThe provincial branches joined forces to contribute to the Foundation’s national research fund, which invested$2.5 million in research to improve treatments and reduce the incidence of kidney disease. Research yieldsmeasurable benefits for patients. For example, researchers at CHUM, with the Foundation’s support, recentlydiscovered a new class of antibodies that cause severe rejection episodes following kidney transplants. Readmore about this discovery on page 11.

Becoming better fundraisersWhether it’s by implementing new procedures, seeking substantial donations or sponsorships to help lower thecost of our programs, or promoting planned giving, we are always on the lookout for creative ways to raise fundsmore efficiently and more cost-effectively.

Promoting well-beingThe combined efforts of volunteers and donors throughoutQuebec, supported by a small team of skilled and dedicatedemployees, have enabled the Foundation to fund promisingresearch initiatives, provide patients with better service, raiseawareness of our cause among the general public and govern-ment, and secure funding from tens of thousands of donorsand businesses. We should all take pride in our organization,which promotes the well-being of people with kidney disease.

2 Kidney Link • Spring 2013

The personal information youhave provided is used only to sendyou this newsletter. To stop recei-ving it, please e-mail us at [email protected] or call us at514-938-4515.

Readers: You can help enrich ournewsletter by sharing your expe-riences with kidney disease or kid-ney transplantation. Please send atext of no more than 300 words,along with a high-resolution photo,to [email protected].

COORDINATION AND WRITINGAntoine Ardiley

GRAPHICS AND PUBLISHINGArdecom

PRODUCTION Ardecom

CONTACT US: The Kidney Foundation of Canada –Quebec Branch2300 René-Lévesque Blvd West,Montreal, QC H3H 2R5

TELEPHONE 514-938-4515 or 1-800-565-4515

FAX 514-938-4757

E-MAIL [email protected]

Circulation: 10,000 copies

The Kidney Link newsletter andYour Health insert are publishedthree times a year by the QuebecBranch of The Kidney Foundationof Canada. Distributed in Englishand French to all people sufferingfrom k idney fa i lure, thesepublications provide valuableinformation on the Foundation’sservices and activities, includingthe latest findings on kidneydisease and organ donation.

The opinions expressed in KidneyLink and Your Health do notnecessarily reflect those of theQuebec Branch of The KidneyFoundation of Canada, its directors,employees or members.

Moving? Please let us know at [email protected].

Articles may be reproducedprovided that the source is quoted.

Christopher GobeilPresident

Martin Munger Executive Director

Message from the Executive Director and the President

Your donation goes a long way at The Kidney Foundation

Kidney Link • Spring 2013 3

For the 2013 edition of The Kidney Walk, the Foundationwanted to give voice to people who have been affecteddirectly or indirectly by kidney disease.

These personal accounts are snapshots of the lives of

volunteers, nephrologists, transplant recipients, donors anddialysis patients who will take part in this year’s Kidney Walkto remind the public of the realities of kidney disease andpromote organ donation. Join them on May 26 to helpadvance kidney research and promote organ donation.

Émilie Savard (Quebec)My name is Émilie Savard. I’m 15 and I’vebeen involved with The Kidney Foundationof Canada for five years.

Why is this cause so important to me?Because my cousin Raphael suffers from atype of kidney disease called nephroticsyndrome.

Six years ago, I took part in my first KidneyWalk in Quebec City with my family. Thattime, I was just a participant. But the secondtime around, I wanted to do more, so I wentdoor to door in my neighbourhood to collectdonations. I managed to raise a little money,but collecting it this way was a lot of work. Plus, a lot of peoplewere suspicious of what I was doing: unfortunately, some peo-ple don’t trust a teenager who goes around knocking on doorsasking for money.

I asked myself how I could raise funds while getting people tounderstand that I was really trying to do something worthyof their trust. That’s when I came up with the idea of sellingLamontagne chocolate. That idea turned out to be a really good

one, because the following year I managed toraise a lot more money! I’ve been using thisfundraising technique for four years now, andevery year, I manage to raise a little more.

Three years ago at my high school, Écolesecondaire Jean-Rimbault, we organized astudent Valentine’s Day card sale that raised$520 for the Foundation.

Last year, my friends and I held what wecalled our “Kidney Day.” All day at school,we wore our Foundation T-shirts whilegoing about our usual activities. Our goalwas simple: make our friends and fellowstudents aware of The Kidney Foundation ofCanada’s existence. I think we achieved our

goal, because a lot of people were interested in our cause,and some of our teachers even supported us by making do-nations. This year, my plan is to get as many people as possi-ble to take part in our “Kidney Day” and to sell organ donationbracelets during lunch hour.

One day, I hope my fundraising campaign will be so successfulthat I’ll get to hold the Foundation’s banner at The Kidney Walkstarting line.

Claude Proulx (Montreal)

Claude Proulx has been an organ donationresource nurse at Hôpital Maisonneuve-Rosemont for 11 years, and has been volun-teering at the Foundation since 2005. AsPresident of the committee tasked with raisingpublic awareness of organ donation, Claude isinvolved in major projects at the Foundation.

“The Gift of Life Humanitarian Award, the schoolsproject, raising awareness among cultural com-munities, Organ and Tissue Donation Week andthe development of a living donor reimbursementprogram… I’m proud to be defending and pro-moting all these initiatives,” said Claude, who alsoworked on getting Bill 125 respecting organ andtissue donation adopted by Quebec’s legislative

assembly in 2010 and helped set up the livingdonor registry.

In 2005, Claude was part of the Montreal -Metropolitan Chapter committee that first cameup with the idea of holding a walk. Naturally, shegot involved in organizing that first Kidney Walk,which took place in Dollard-des-Ormeaux thatsame year; 40 people got together for the Walkand raised $5,000. Seven years later, the 2012Kidney Walk attracted more than 2,000 walkersand raised over $270,000.

Claude will be taking part in the 2013 Walk to raisepublic awareness of organ donation. “It’s also theperfect occasion to socialize and meet transplantrecipients and people awaiting a transplant,” saidClaude, who hopes this year’s event will be assuccessful as in previous years.

Personal invitations to walk The Walk

2013 WALK SPECIAL FEATURE

Émilie with her cousin Raphael, whohas kidney disease

Claude Proulx, President of the Organ donation Public AwarenessCommittee of The KidneyFoundation of Canada.



Dr. Damien Bélisle is the Head of the Nephro -logy Department at the CSSS de Chicoutimi(Chicoutimi Health and Social Services Centre)and has been the Honorary President of theSaguenay Walk for the past four years.

When asked by the Foundation to be a spokesmanfor The Kidney Walk, he was delighted, seeing therole as a perfect opportunity to increase aware-ness of peritoneal home dialysis among patientswhile sensitizing the public to the realities ofkidney disease. Always aspiring to put patients’well-being first, the CSSS of Chicoutimi encou -rages patients to opt for home dialysis, whichgives them greater freedom and autonomy, not tomention generating considerable savings for thehealthcare system.

“In the Saguenay, 40% of kidney patients undergodialysis at home. At a time when an increasingnumber of people suffer from kidney disease, wechose a regional solution focusing on raisingawareness among our patients,” said Dr. Bélisle.

Awareness-raising will be paramount at this year’sSaguenay Walk. “Our goal is to show people thatthe Foundation’s raison d’être is to help the publicand ensure that patients get the moral supportthey require,” said Dr. Bélisle, who also underscoredthe outstanding work volunteers do to make anevent like The Kidney Walk happen.

“Even when they have a circle of friends andfamily, patients feel isolated. It does them goodto meet people experiencing the same realities asthem, people whose lives are like their ownbecause of kidney disease,” he added.

In 2013, the CSSS de Chicoutimi will welcometwo new nephrologists, one of whom will focuson following up with transplant recipients. “Wewant to boost our involvement in transplantationand in living donation,” said Dr. Bélisle, whohopes to get more of the region’s physicians tohelp raise The Saguenay Walk’s profile, not tomention that of the Foundation.

Raphael Mimeault (St-Jérôme)Since he was just a baby, Raphael has suffered frompolycystic kidney disease, which has made hiskidneys much larger than normal.

“Raphael was only a few months old when he contracteda urinary tract infection. An ultrasound revealed that ourbaby boy had a major kidney problem,” said MélanieBergeron, Raphael’s mother.

For the first few years, Raphael’s illness had no majorrepercussions. But after four years of stability, Raphael’scondition started to deteriorate. “His blood pressurestarted to rise and his kidneys got bigger and bigger. Theywere taking up so much space in his tiny tummy that hecouldn’t even eat enough,” she recalls.

After a year and a half of force-feeding Raphael just so he could get the nutrition heneeded, the pain in his abdomen became too much for him to bear, so the decisionwas made in November 2011 to remove both his kidneys. “Raphael underwent a10-hour operation. He was then started on hemodialysis, and finally, switched overto peritoneal home dialysis,” said Mélanie.

Thanks to his fourth grade teacher, Raphael was able to keep up with his studiesfrom home and finish his school year like everyone else. It was a challenging yearfor Raphael and his parents, who faced a number of hardships and an extremelybusy schedule.

In the spring of 2012, Mélanie Bergeron gave her son Raphael the greatest gift hecould hope for: a kidney. “Raphael is doing well. He’s starting to run, skate and havefun with his friends. His life is slowly but surely getting back to normal,” she said.However, she keeps a realistic outlook when it comes to her son’s health, which sheknows could take a turn for the worse at any time despite the transplant.

“A lot of folks look up to people like athletes, artists or intellectuals as theirrole models. Our role model is our son Raphael, and we’re lucky to be with himevery single day. His presence in our lives helps us be better people,” she said.

Raphael’s parents focus on the positive side of their son’s illness. They’re proud tohave an extraordinary boy who is so full of life and always a ray of sunshine, not tomention being a role model for his sister, his whole family and his friends.

On May 26, the Mimeaults will walk the Walk as a team in support of organ dona-tion while sharing their unique story with the public.

Dr. Damien Bélisle at theSaguenay Walk Raphael Mimeault,

one year after his kidney tranplant

Dr. DamienBélisle (Sa-guenay)

The team “Les Mimeault” at the 2012 Montreal Walk.


Josée Parenteau (Sherbrooke)“The best Christmas present I’ve ever received arrivedon December 21, 2005,” said Josée Parenteau, whowas in so much pain that she was placed on the emer-gency transplant list to be given priority should adonor organ become available, a rare exception forkidney transplants.

Josée soon received a kidney. Someone had passed away,and that person’s family had agreed to donate their lovedone’s organs so that their loss could provide a future topeople awaiting a transplant. This gift allowed Josée tostart a new life.

“I want people to know that signing their health insurancecards to become potential organ donors really saveslives,” said Josée, who is well aware that she is alive today because of the kidneyshe received, and that her survival also meant that somewhere, a family wasmourning someone they lost.

She admits to thinking about and even speaking to her donor every day sinceshe got her transplant. When someone who dies donates one or more organs,that person is never forgotten, neither by his or her family nor by the transplantrecipient’s family.

Josée Parenteau is one of the people behind the rebirth of the Foundation’sEastern Townships Chapter, where she has been President for the past four years.She is also President of the steering committees of the Jean-Jacques Bégin benefitdinner and The Kidney Walk, and a member of the Quebec Division’s Board ofDirectors. Josée’s determination, hope and dedication inspire both volunteers andstaff as they strive to achieve the Foundation’s mission.

Sofia Dilembo (Montreal)I never could have imagined being able to save the life ofsomeone so close to me. I’ve known Anthony for over10 years. We met at Dawson College and we’ve been bestfriends ever since. When I learned that Anthony’s kid-neys had stopped working and that he had to undergodialysis at home several times a day, it broke my heart.

I knew I couldn’t just sit there and twiddle my thumbs,watching him undergo all those difficult treatments. SoI told Anthony and his parents that I wanted to give himone of my kidneys.

Although I didn’t know if my kidney was a match for him,I knew something had to be done. Over the next fewmonths, I underwent a long list of tests, saw countlessdoctors, and finally received the amazing news: I was a 100% match for Anthony!

When we got the news, our eyes filled with tears of joy. The unknowns never worried me,because the doctors had prepared me well. I also knew I could count on the unconditionalsupport of my family, my friends and most importantly, my best friend Anthony.

I knew that as of May 12, 2011, he would have his health back and that he would haveit for the rest of his life, and as I made that major decision, his health was the onlything I could think of.

I am absolutely thrilled about what I’ve done, and seeing him enjoy life again is thebest reward I could ever have hoped for.


Laureen Bureau (Gatineau) “I was four years old when an ambulance took me tothe hospital from my appointment with my pediatri-cian. I was in the final phase of kidney failure,” saidLaureen Bureau. What followed was a long relation-ship with hospitals. That was in 1960, when shewas living in Saint John, New Brunswick, with herparents and four sisters.

Throughout her childhood, she had to travel repeatedlyfrom Saint John to Montreal for treatment at the MontrealChildren’s Hospital. “Unfortunately, I wasn’t respondingto any treatments due to severe homesickness, so theyhad to send me home,” explained Laureen.

During her adolescence, Laureen’s health stabilized,sparing her the inconvenient hospital stays. “At that pointin my life, I graduated from high school, then CEGEP, andthen I worked a little. I also returned to the MontrealChildren’s Hospital to volunteer,” she said.

The day after her 26th birthday, the condition of Laureen’skidneys suddenly deteriorated, which made it increasinglyhard for her to study; she felt very weak and lost interestin eating. “Just when I was about to move to Montreal,my nephrologist started talking about dialysis and eventransplantation,” she recalled.

In early 1984, her sisters got tested to find out if one ofthem could be a compatible donor. It turned out that heryoungest sister, Jacqui, was a perfect match. Laureenreceived her sister’s kidney on August 8, 1985, at age29. “My sister’s gift changed my life forever, and ithelped us forge an unbreakable bond. I will be forevergrateful to her,” said Laureen.

Laureen has been a member of the Board of Directors ofthe Foundation’s Outaouais-Québécois Chapter for thepast three years and a Kidney Walk volunteer for the lasttwo years as both a fundraiser and a participant. “I’ll betaking part in the 2013 edition of The Kidney Walk and I’llbe sharing my story to raise public awareness of organdonation,” said Laureen.

Jacqui (right) gave a kidney to her big sister Laureen in1985


Sofia with her best friend An-thony, to whom she donated akidney

Josée Parenteau, presi-dent of the Estrie Chapterof The Kidney Foundationof Canada

Register to kidney.ca/quebecwalk

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On May 26, get your team together andwalk The Walk with us in support of kid-ney health and organ donation.

Register by going to kidney.ca/quebecwalk

The Kidney Walk

Christine Dufour (Gatineau)Like a lot of people living with kidney failure, Christine knowsher kidneys are slowly failing. It’s September 2006.

“I was getting terrible headaches that kept me awake nights andprevented me from functioning during the day. As if that were notenough, I was always tired and out of breath. I was 19, and I only caredabout the here and now. I really didn’t think about the future. All thatmattered to me was having fun,” she said.

She knew something was wrong, but she had no idea that it was dueto a serious illness that could destroy her kidneys.

The doctor’s diagnosis shocked her: she could never have imaginedshe’d be told her kidneys would never work again. After all, she hadgone to the emergency room just because of her headaches. Almostimmediately, they implanted a fistula in her arm so they could start her ondialysis. To this day, she holds painful memories of that particular event.

“I was in a panic, lying on the table, arms spread out, needlessticking in me. I was too freaked out to realize that it wasn’t actuallypainful. I just wanted them to leave me alone,” said Christine, whowas afraid of being less feminine because of the scars left by theimplantation of the fistula.

The dialysis treatments kept coming, and so did the bad news. Shelearned that, because of her kidney failure, she would have to adopta very strict diet. “I couldn’t eat any of the things I love, like choco-late, strawberries, oranges, bananas or milk. Not to mention salt andeven water, which I couldn’t just drink when I wanted to anymore,”she added.

Over her five long years of dialysis—three on hemodialysis and two onperitoneal dialysis—Christine finally received a kidney from her father,who turned out to be a match for her. The transplant took place in thesummer of 2011 and was successful. “It was going to be the last stopin a long and painful journey. Finally, the transplant was going tochange everything. My father gave me something I didn’t expect: myhealth!” said Christine, who will never forget the summer her lifechanged forever.

The first months following thetransplant went well. Christinefinished her secretarial studiesand found a part-time job. Butbefore long, there were signsof rejection. To prevent it, hercortisone doses were increased.Although her creatinine level re-mained high, Christine’s state ofhealth was relatively stable for afew months. But in the summerof 2012, the rejection recurred.

“So I was started on Campath, akind of chemotherapy, whichwas followed by high-dose corti-sone. I was exhausted and losinghope. My stability was gone andI was completely drained. My body was swollen — I gained 15 pounds— and I was losing my hair because of the huge doses of medication.But I couldn’t give up!” she recalled.

A few months of calm seas gave Christine hope that she was gettingbetter, but in the fall, she received some terrible news. She was toldthat she had become diabetic because of the high doses of antirejec-tion drugs she was taking. She decided to take charge and tackle theproblem head-on as she had in the past.

Months passed and her condition wasn’t improving, so she decided,in conjunction with her doctor, to modify the dosages of her medica-tions, switch antirejection drugs and adopt a new diet. “I take fewerdiabetes medications. As a result, my hair gradually stopped fallingout and my hemoglobin level has remained reasonable,” saidChristine. Today, she is full of energy and slowly but surely regaininghope of a stable life and a healthy body.

Christine will be at The Walk on May 26 to raise as much money aspossible for The Kidney Foundation of Canada. Her wish is to be ableto keep promoting organ donation and helping people in her regionwho are facing kidney failure.


Sunday, May 26, 201310 par ticipating cities

Christine Dufour would like tofundraise more than $1,000 forthe Kidney Walk on May 26

YOUR HEALTH • Spring 2013 1

YourHealth

Spring 2013The Kidney Foundation of Canada, Quebec Branch

The publication of this special feature was made possible thanks to the financial support of:

Kidney transplanta-tion and its psycho-logical effects onpatients

Organ transplants are by far amongmedicine’s most technologically advanced procedures. In 2012, 252people in Quebec received a kidneytransplant, while another 923 wereawaiting one. The average wait timefor a kidney transplant is now overthree years.

These statistics clearly demonstrate the cur-rent lack of donor organs, a source of a num-ber of transplant-related stresses. They alsoexplain the need to carefully select potentialrecipients. Originally, recipients were se-lected according to medical criteria alone,such as tissue typing, candidate health andorgan availability. Those in the medical fieldrecognize the impact various psychosocialfactors can have on a person’s ability to dealwith the issues surrounding the variousstages of the transplantation process: pre-transplant, immediate post-transplant andlong-term post-transplant.

2 YOUR HEALTH • Spring 2013

Your Health

Post-transplant psychiatric complications

In the month following the transplant, recipientscan obtain psychological support from psycho l-ogists who specialize in organ transplantation.The mixed and poorly understood emotions thatfollow the transplant, such as feelings of in-debtedness, guilt and being beholden to thedonor, are completely normal. It is also possibleto seek this psychological support during thepre-transplant period.

Psychologists who are integral members of thetransplantation team must have four specific com-petencies: expertise in evaluating psychologicalstates and behaviours; expertise in dealing withtherapeutic adherence, depression and anxiety;the flexibility to work with individuals, couples,families and groups; and research skills. As a re-sult of their professional training, of the personalqualities that make them competent psycho lo-gists, and of their ability to work in a multidisci-plinary setting, psychologists play an essentialrole in optimizing both patient care and the medicaland scientific progress of transplants.

“It is important to understand that transplantsare not a cure; however, they are the only al-ternative to dialysis, and they can involve adifficult adjustment. Many patients, especiallyyoung ones, expect their transplant to be acure that will restore the life they once led.This, despite doctors’ insistence on both theimportance of preparation and the fact thatthe transplant will not be a long and smoothroad. But for patients awaiting a transplant,these words often fall on deaf ears. We havealso noted that many patients have a blaséattitude toward kidney transplantation because

transplants are now so widely available in oursociety. As a result, potential organ recipientsrarely consider the negative effects they mayexperience and often feel depressed in the sixmonths that follow the transplant, especiallyyoung patients and those on peritoneal dialy-sis.” Dr. Marie-Josée Hébert, researcher atthe CHUM Research Centre (CRCHUM) andDirector of the Organ Transplant Programat Université de Montréal.

The psychological consequences ofkidney transplantation include:

• An episode of depression in those who idealizethe transplant. Often they mourn their unrealizeddreams, such as that of regaining their fullhealth after the transplant. They also feel guiltyfor not being able to contribute to society, afeeling patients often have trouble expressing.

• Difficulty accepting the transplanted organ as anatural part of themselves, seeing it instead asa foreign body.

• Anxiety about the potential rejection of thetransplanted organ and the return to dialysis therejection would entail.

• Potential mood disorders linked to the transi-tion from dialysis patient to transplant recipient.Some patients mourn their former life and therelationships they had developed at the hospi-tal. In the case of deceased-donor kidneys,transplant recipients may also mourn the donor.

• However, positive psychological outcomes arealso possible, such as feelings of accomplish-ment, the ability to maintain a sense of self intothe future, the quality of the social support sys-tem and a sense of independence.

The psychological process of the transplant

Each step in the transplant process involves its ownchallenges. First, there’s the shock that comes withreceiving the diagnosis of end-stage organ failurerequiring a transplant. During the selection process,patients may experience fear and anxiety aboutwhether they meet the medical criteria governingacceptance as a potential recipient. Once on theorgan waiting list, patients experience a range ofemotions: fear that no compatible organ will be-come available; growing awareness of both thegravity of their illness and their own mortality;

decreased ability to function in all areas of life;alienation from their social circles; tension withspouse and family as a result of the omnipresentuncertainty; and an increasing sense of discourage-ment and hopelessness as the wait drags on. In thisphase, patients also experience feelings of guilt,often because they perceive that they are competingwith other potential transplant recipients, or becauseby hoping to receive an organ, they are indirectlyhoping a potential donor will die.

As the surgery approaches, fears become morespecific—the procedure, anaesthesia, hospitalization andthe odds of success. During the period immediatelyfollowing the transplant, recipients experience reliefand hope, which often reduces anxiety; however, forsome, the anxiety returns quickly as the first biopsiesare conducted to assess the state of the transplantedorgan. Over the longer term, the acknowledgmentof this “second chance at life” leads to growingawareness of the need for treatment adherence, ofthe risks of various complications (episodes ofrejection, readmission to hospital, side-effects frommedication), of the lifestyle changes that need to bemade, and of the challenges of reintegrating intosociety. As a result, all candidates are expected toexperience some degree of psychological distressduring the transplantation process.

In fact, some may even develop a psychiatricdisorder. A number of factors determine the reactionspatients may have: various forms of stress, asdescribed above, which tend to be amplified inpatients who are more ill; the psychopathologicalpotential, i.e. individuals’ current mental state andtheir personal and family history of psychiatricdisorders; and the resources available to patients,especially the quality of available social support. Inthis respect, we use a biopsychosocial model toexplain each patient’s individual risk of developing apsychological reaction to the issues surrounding thetransplant.

YOUR HEALTH • Spring 2013 3

Your Health

Issues and psychological effects occurringduring the various transplant phases

PHASE ISSUE PSYCHOLOGICAL EFFECTS

Pre-transplant • Shock, certainty regarding the • Acceptance or refusal/denial

phase seriousness of the condition • Anxiety, fear

Diagnosis of • Uncertainty regarding meeting • Depression

kidney failure eligibility criteria • Feelings of guilt

• Availability of an organ (or lack thereof) • Grief

Selection • Awareness of the seriousness of • Isolation

the condition and complications • Interpersonal problems

Placement on • Competition with other • Discouragement,

the waiting list candidates on the list hopelessness

• Confronting death, death of

other candidates

• Awareness of the donor’s death

• Shrinking of and alienation from

social circle, marital tension

• Extended wait

Pre-op phase • Awareness of the surgical procedure, • Persistence and/or aggravation

anaesthesia, hospitalization of previous reactions

• Odds of success

Immediate • Potential improvement of • Awareness of a

post-transplant health and quality of life “second life”

phase • Lifestyle changes • Relief, hope

Biopsies • Use of immunosuppressants • Reduced symptoms

and follow-up • Wait for results of distress

• Coping style

• Consistent treatment adherence

or non-resurgence of anxiety

Post-transplant • Social reintegration • Impact on self-image

to long-term • Readjustment to previous roles • Abandonment of “sick person” role

phase • Family support • Powerlessness

• Acceptance of the organ • Dependency/autonomy

• Acceptance of body image • Resurgence or emergence

• Potential complications of psychopathological

disorders

4 CAHIER SANTÉ • Printemps 2012

Working with donors

Living donor transplants are on the rise. In 2012in Quebec, 53 living donors donated one oftheir kidneys. When interviewing these people,psychologists must first ensure that the personoffering to donate an organ is doing so voluntarily

and not in response to real or perceived family orsocial pressure. Psychologists therefore helppotential donors explore their motivations, thenature of their relationship with the recipient andthe reactions they expect to have in the event thatthey are deemed ineligible as a donor or if thetransplant fails.

Psychologists also ensure that donors know whatto expect in terms of the transplant procedure andtheir own surgery. Paradoxically, in kidney dona-tion, donors often experience the most post-operative pain—their surgery is considered moreintrusive—while getting less attention and familysupport than the “stars” of the show, the recipients.This situation, exacerbated by the loss of an organ,can increase the risk of depression.

Psychologists must remain vigilant in identifyingcases involving imbalances in family dynamics orpersonality issues, e.g. wanting to donate anorgan to repair their reputation as the black sheepof the family or in the hope of filling a void. In thiscase, the psychologist’s involvement stimulatesdialogue that can help address any non-relevantexpectations.

Sources :

La psychologie de la santé, les enjeux psychologiques dela greffe d’organe. Achille, Marie, professor and researcherin the Psychology Department at Université de Montréal.Psychologie Québec, January 2002.

With Dr. Marie-Josée Hébert, researcher at the CHUMResearch Centre (CRCHUM) and Director of the OrganTransplant Program at Université de Montréal.

Transplant Québec, 2012 statistics.

Your Health

4 YOUR HEALTH • Spring 2013

For decades, the line between mentalhealth and physical health has beenblurring. Psychologists have long beenaware of the impact that physicalhealth problems can have on mentalhealth, and vice-versa. Through theirperseverance, psychologists have suc-ceeded in convincing the health sectorof the importance of treating patients’physical and emotional selves, and pa-tients are all the healthier for it.

Patient ServicesTo receive documentation and information about theprograms offered by the Quebec Branch of The KidneyFoundation of Canada, refer to the “Patient Programsand Support” and “Organ Donation” sections of ourWeb site at www.kidney.ca/quebec, or contact:

Hélène Boisvert, Programs DirectorThe Kidney Foundation of Canada – Quebec Branch2300 René-Lévesque Blvd WestMontreal, Quebec H3H 2R5Tel.: 514-938-4515, ext. 224, or 1-800-565-4515E-mail: [email protected]

Financial aid programThis program was created so that hospitals could help pa-tients in dire financial straits when no other options areavailable. Funds can be used to reimburse certain expensesincurred by patients, such as the costs of travel, accom-modation or special food.

ScholarshipsThese financial Bursaries are given to dialysis patients orkidney transplant recipients pursuing college or univer-sity education. The application deadline for the fall 2013semester is September 30.

That was one of the findings of the fall 2012survey of 7,000 patients and Kidney Linknewsletter subscribers. Over 70% of patientsknew of and read the newsletter regularlyand are very satisfied with its content. Re-cently, we decided to feature the stories ofpeople whose lives have been impacted di-rectly or indirectly by kidney disease. Itwas something our readers were askingfor, and we heard them loud and clear.

The “Living with Kidney Disease” patientmanual and MedicAlert bracelets are also amongthe services best known and most used by patients. On

the opposite end of the scale, the Financial Aid Program,Kidney Kids Camp, Web site and scholarships

were the least known of our programs. Also,many people said they preferred the paperversion of our publications over the digitalversions such as the Web site. And finally, hos-pitals appear to be the main vehicles throughwhich patients hear of the services the Founda-tion delivers.

It is important to the Foundation to know howsatisfied patients are with the programs and ser-vices we offer. That’s why we regularly ask opi-nions of patients.

The foundation of kidney care

The Kidney Link newsletter is a hit with readers

The Foundation’s Kidney Kids CampThis year’s Kidney Kids Camp will take place from August 3 to9. It gives kids from 8 to 18 years old who suffer from kidneydisease a chance to enjoy a week of summer camp fun. Dr.Marie-José Clermont, nephrologist at Montreal’s Sainte-JustineHospital, will be on site the entire week with a team of nursesfrom the Montreal Children’s and Sainte-Justine hospitals.


2012 Kidney Kids Camp

“Living with Kidney Disease” patient manualGiven to new patients free of charge, the manual isavailable in English, French, Italian, Chinese, Punjabiand Portuguese. It is also available as a video and audiocassette, over a hundred of which have been distributedto dialysis centres across Quebec.

MedicAlert braceletsThe Foundation helps purchase stainless-steel MedicAlertbracelets for kidney patients who do not have the financialmeans to do so.

PagersThanks to an agreement between The Kidney Foundationof Canada and Bell Mobility, people awaiting a kidneytransplant can rent a numeric pager with unlimited service ina Bell Mobility coverage area, free of charge for 12 months.

Important Note: Upon reception of your pager, don’t for-get to give your number to your transplant Center to bereach as quickly as possible in case of emergency.



News from the Chapters

On March 1, the Foundation’s kidney health screening cen-tre made a stop in Trois-Rivières. This successful day ofawareness-raising helped some 100 people get their bloodglucose level, blood pressure and body-mass index(BMI) measured, while finding out if they are at risk ofdeveloping kidney disease. Chapter board members JulesBuisson, Daniel Turcotte and Sabrina Nimour used theoccasion to make visitors to the Centre Les Rivièresshopping mall aware of the importance of organ donationand the realities of kidney disease.

Did you think of making a dona-tion in your will?

MAURICIE/CENTRE-DU-QUÉBECThe Kidney Health Tour went toTrois-Rivières on March 1

GATINEAUA success for the Outaouais-QuébécoisChapter’s annual general meetingOn March 10, the Outaouais-Québécois Chapter’s AGMwas held at the Cabane en bois rond in Gatineau. Over35 people took part, including patients, friends and membersof the Foundation’s medical staff. Recognition certificateswere handed out and an income tax workshop was held atthe meeting. Over the course of the day, a new, seven-member Board of Directors for the Outaouais-QuébécoisChapter was elected.

Save the Date •May 26 – The Kidney Walk takes place simultaneously in 10 cities. For information and registration, visit kidney.ca/quebecwalk

•August 5 to 9 – The Kidney Kids Camp

•October 25 – CODA ceremony

•November 21 – Founder’s Award Campaign Gala

Upcoming

golftournaments

Daniel Turcotte (left) and Jules Buisson, President of theMauricie/Centre-du-Québec Chapter, being interviewed byCogeco in Trois-Rivières during the Kidney Health Tour

June 8 - Cunningham’s Golf Tournament at Hudson’sFalcon Golf Club (for information, contact LindaPellas at 514-938-4515, ext. 227)

June 10 - Quebec City Chapter Golf Tournament (forinformation, contact Maryse Néron at 418-683-1449)

June 14 - Outaouais-Québécois Chapter’s Aimé-Charron Golf Tournament (for information,contact Bruno Tousignant at 819-661-5079)

September 16 - The Founder’s Award Golf Classic(for information, contact Linda Pellas at 514-938-4515, ext. 227)



Organ Donation

At our school, we had to create an exhibit. I decided to do mine on the car industry. While I was doing my research, I found information aboutyour organization. I learned that, in addition to recycling cars, you support research programs thatfocus on kidney disease. I am writing this letter toyou to congratulate you.Recycling cars is an altruistic action that’s good for the environment and the planet. With the carsyou recycle, you allow new cars to be built. It’s awonderful thing to do, and you’re providing money to fund research into kidney disease, which is evenbetter! The donations received through the KidneyCar program will surely save the lives of many people. You are doing something amazing for peoplewho are sick.

To thank the people who have donated their cars,you send them tax receipts. By reimbursing a part of the income taxes of the person who donated acar, you are encouraging other people to recycletheir cars too.Lastly, I want to assure you that the day my carneeds to be recycled, I will send it to you. What youare doing is extremely generous and, thanks to you,more people can live healthy lives.

Audrey Soulier

The Kidney Car programhas fans of all ages

Kidney Car is a Foundation fundraising programlaunched in 1995 in Quebec.

The concept is remarkably simple: if you have an oldcar you want to part with, you can donate it to TheKidney Foundation of Canada. The Foundation haspartnership agreements with 18 auto recycling cen-tres serving Quebec, which are mandated to towyour vehicle for free. Once your old beater is off theroad, it is broken down into parts that are fully recy-cled. You’re not only contributing to a good cause,you’re helping reduce greenhouse gases and doingsomething good for the environment.

In addition to free towing, you’ll get a tax receiptfrom The Kidney Foundation of Canada for your do-nation.

For more information on the Kidney Car program, visit kidney.ca/kidneycar.

We are delighted to publish a letter we received fromAudrey Soulier, a 6th grader at Montreal’s École pri-maire internationale La Vérendryewho wrote about theKidney Car program and how much it means to her.

IMPORTANT NOTEThe fall 2013 edition of the Kidney Link will be published exclusively in electronic format.

However, the print version will return as of the winter 2014 edition.

If you would like to receive your Kidney Link newsletter and the Your Health booklet inelectronic (PDF) format, simply register at newsletter.qc.kidney.ca.


Every year, approximately 250 transplants are performedin Quebec. Yet the number of patients on the province’stransplant waiting list keeps growing, and every year, peopleon that list die while awaiting an organ. The number of peoplesuffering from kidney failure is still climbing, and all signs indi-cate that the trend is not going to ease anytime soon, duemainly to the aging population and the increase in the incidenceof diabetes and high blood pressure, which are precursors tokidney disease.

Because we consider this situation unacceptable, theFoundation has been advocating for a number of years infavour of increasing the number of transplants.

The Foundation is working to increase the number of kidneytransplants performed each year, from both deceased andliving donors, to 350 within the next three years.

Work on achieving this goal began in 2012, when the Foundationsent a letter to Quebec’s main political parties remindingthem of the urgency of the situation. This was followed by thepublication of an economic report clearly demonstrating thefinancial advantages of transplantation. Other initiatives areunder way to convince the province’s health minister andother key healthcare system stakeholders of the benefits ofpromoting transplantation.

Kidney transplantation is the ideal solution in every respect:

• Transplant recipients, whose life expectancy and quality of lifeimprove considerably, can once again take part in everydayactivities, including returning to the labour market

• The public healthcare system benefits when the costs associatedwith treating end-stage renal failure drop significantly

•Medical personnel who perform transplants more regularly canmake sure all of society benefits from their high-level expertisewhile potentially improving transplantation techniques

• The economy benefits as workers and business owners returnto the labour market

• Governments benefit from greater income tax revenues andlower healthcare costs, which provide greater budgetary leeway

Improving quality of life for people with kidney disease and theirloved ones is a vital issue. The Foundation seeks to partnerwith all stakeholders interested in working to improve the kidneytransplant situation in Quebec. Consequently, the Foundationfosters collaboration with the public and governments.

The Kidney Foundation of Canada takes aleadership role in advocating for policiesand programs to meet the needs of peopleliving with chronic renal insufficiency.

Transplant recipient Michel Perron is a cham-pion on several fronts, but he acknowledgeshis fortune with great humility: “Had I notbeen on the receiving end of a precious kid-ney, I would have been forced to stop workingand my life would have taken a very differentturn.” This 80-year-old Quebec businessmanstarted on dialysis at Montreal’s Royal Victo-ria Hospital in 1992. At the time, people over60 were not eligible for transplants, but be-cause his son had a kidney to give, the sur-geons agreed to perform the operation.

Michel returned to work only eight days later.He celebrated his 62nd birthday and the firstanniversary of his transplant by raising TheKidney Foundation of Canada’s flag at theNorth Pole in 1994.

At his wife’s suggestion, he turned hisadventure into a fundraising campaign, andso the Michel Perron Research Fund wasborn. “When I got back, I found out that wehad raised $250,000!” he said.

Twenty years later and with a fully functioningkidney, Michel regularly visits dialysispatients in his community. “Because of myown story, I feel I have a responsibility togive hope to patients on dialysis andencourage them to undergo a transplant,”said Michel, a father of seven and grandfatherof 22. “Donating a kidney today is mucheasier than it used to be, both for the donorand the recipient. Transplant and dialysistechnology has really improved over theyears.”

Foundation luminary Michel Perron marks the20th anniversary of his transplant

Michel Perron in 1994 during hisNorth Pole expedition. He celebratedthe 20th anniversary of his trans-plant on April 7, 2013.


I want to officially endorse and supportThe Kidney Foundation of Canada in its de-mands to the Quebec Government to favorthe appropriate mechanism to expand theavailability of organs for transplantation.You can make your support known:

• at the Kidney Walk on May 26;

• on Facebook facebook.com/reinquebec;

• at your dialysis or transplantation centre;

• by filling out the form on page 12 and return-ing it in the enclosed envelope.

Organ Donation



Research

Dr. Mathieu Lemaire is currently pursuing a PhD at Yalein the laboratory of Dr. Richard Lifton (InvestigativeMedicine Program), which has established an interna-tional network to study Dent’s disease.

Dr. Lemaire will use cutting-edge genomic technologyknown as whole exome capture to make a snapshot ofnearly all the human genes at once to identify the genesinvolved in Dent’s disease. This project will be the firsttime that the technology will be used on a large group ofunrelated patients.

Dent’s disease is a genetic condition characterized by thedysfunction of the proximal renal tubules of the kidney.The proximal tubule is one of the most important parts ofthe kidney filtration system as it plays a key role in trans-ferring vital components such as sodium and other ions,water, glucose, and amino acids back into the blood.When the proximal tubule is unable to do this, patientsbecome very sick because the body can no longer retainthese vital elements. Unfortunately, genetic disordersaffecting the proximal tubule are very serious and can-not be cured. To date, two genes have been identifiedas playing a role in the onset of Dent’s. However,researchers have found that a significant group of peo-ple who suffer from an illness closely resembling Dent’sdisease show no signs of mutation in these two genes,which would indicate that other genes are likely linkedto Dent’s disease.

Finding novel disease-causing genes for Dent’s diseasewill have important diagnostic implications for thesepatients and may lead to new therapies as well as fur-thering our general understanding of proximal tubulefunction.

Dr. Mathieu Lemaire received his MD from McGill in2004 and completed his Pediatric Nephrology training atSick Kids (Toronto) in 2009. Dr. Lemaire is a recipient ofa 2010-2013 Krescent Fellowship.

Researchers uncover genesresponsible for Dent’s disease

A team led by Dr. Marie-JoséeHébert at the Centre hospitalier del’Université de Montréal ResearchCentre (CRCHUM) has discovereda new cause of organ rejection insome kidney transplant patients.Her team has identified a new classof antibodies — anti-LG3 — whichwhen activated lead to severe rejec-tion episodes associated with a highrate of organ loss. This discovery,which holds promise for organrecipients, was published in theonline version of the American Journalof Transplantation.

Rejection is one of the major obstaclesto organ transplantation. For the mostpart, it occurs when the recipient’simmune system recognizes thetransplanted organ as a foreign bodythat must be eliminated. However,even when there is a good donor-recipient immunologic match, therecipient’s immune system canattack the transplanted organ’sblood vessels. Called acute vascular rejection, this phenomenon oftenleads to a high rate of graft loss.

Dr. Hébert’s team has described anti-LG3, an antibody that somepatients produce to attack LG3, as a protein that plays an importantrole in vascular repair and regeneration. “In these patients, the secretionof LG3 by the new kidney stimulates the activity of these antibodies,which attack and injure the blood vessels of the transplanted organ.The net effect is that the normal healing process of the transplantedorgan is hindered, if not interrupted, leading to impaired kidneyfunction and even loss,” explains Dr. Hébert.

By identifying the heightened presence of anti-LG3 antibodies inpatients prior to transplantation, researchers will be able to predictthe development of severe rejection episodes. “These results are quiteexciting,” notes Dr. Hébert, “and suggest that new therapies aimed ateliminating LG3 antibodies prior to transplantation could reduce organrejection or limit its severity.”

Given that LG3 is present in all blood vessels and thus in alltransplanted organs, Hébert’s results could also explain rejection of othertypes of transplanted organ, such as the heart, lung and pancreas.

Source : Centre hospitalier de l’Université de Montréal (CHUM)Research Centre

Doctors at the CHUM Research Centre have discovered a new cause of rejection in some kidney transplantrecipients

Dr. Marie-Josée Hébert is a researcher at the CHUMResearch Centre (CRCHUM)and Director of the OrganTransplant Program atUniversité de Montreal. Shehas been working with TheKidney Foundation of Canadaas a speaker specializing inkidney transplantation.

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The Kidney Foundation of Canada is callingupon the Quebec Government to take stepsto reduce the social and economic impactof kidney failure in Quebec. With the inci-dence of renal failure on the rise, The KidneyFoundation of Canada demands thatorgan donation be a priority and that thenumber of kidney transplants performedbe increased to 350 a year (in 2012, 252 transplants were performed).

I want to officially endorse and support TheKidney Foundation of Canada in its demandsto the Quebec Government to favor theappropriate mechanism to expand theavailability of organs for transplantation.


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2013

Quebec Branch 2300 René-Lévesque Blvd WestMontreal, Quebec H3H 2R5Tel.: 514-938-45151-800-565-4515Fax: [email protected]

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