The Kidney Link - Spring 2013 by The Kidney Foundation

Kidney transplantation and its psychological effects on patients

Your Health

Kidney Link Spring 2013

The Kidney Foundation of Canada – Quebec Branch

On May 26, we are counting on you!

The Kidney Walk of The Kidney Foundation

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

The Quebec Branch now on Facebook Early this spring, the Quebec Branch of The Kidney Foundation of Canada made its Facebook debut, launching a page featuring local information, news, activities and events related to the Quebec Branch and its chapters. Visit and “Like” the Foundation at facebook.com/reinquebec

Michel Perron marks the 20th anniversary of his transplant The Kidney Walk will take place in 10 cities across Quebec on May 26, 2013. Read the testimonials of people whose lives have been impacted directly or indirectly by kidney disease. Their words, which recount unique stories of the realities of kidney disease and transplants, speak volumes about the importance More on page 3 of supporting the Foundation.

Well-known Foundation volunteer Michel Perron received 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 to the North Pole. The Foundation highlights this milestone. More on page 10

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

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

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

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

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

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

The foundation of kidney care

The personal information you have provided is used only to send you this newsletter. To stop receiving it, please e-mail us at infoquebec@kidney.ca or call us at 514-938-4515. Readers: You can help enrich our newsletter by sharing your experiences with kidney disease or kidney transplantation. Please send a text of no more than 300 words, along with a high-resolution photo, to infoquebec@kidney.ca. COORDINATION AND WRITING Antoine Ardiley 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

Message from the Executive Director and the President One year into the implementation of our strategic plan In 2012, the Quebec Branch of The Kidney Foundation of Canada launched a new strategic plan, and in the wake of the launch, the Branch’s volunteers and staff went straight to work on the task of lessening kidney disease’s burden on society..

Grabbing the spotlight Bringing kidney health to the forefront There’s no hiding it: the public knows too little about kidney failure. If we ever hope to garner the support of the public, donors and government in order to improve treatments and patients’ quality of life, this situation will need to change. In the past year, we have claimed a greater media presence. We have fostered journalists’ interest in our plight and helped get feature articles on organ donation published in newspapers. The issues surrounding kidney health 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 included launching our e-newsletter in the spring of 2012 and a Facebook page for the Quebec Branch.

Increasing the number of kidney transplants The Organ and Tissue Donation Committee launched a major campaign to persuade the Government of Quebec to adopt several measures aimed at increasing the number of kidney transplants performed each year to 350 from the current 250. The Foundation sponsored an economic report demonstrating the relative benefits kidney transplantation has over dialysis. We were supported by a number of organizations and associations and expect to meet with the Minister of Health and Social Services, Dr. Réjean Hébert, in the near future to present him with a series of proposals for promoting both living- and deceased-donor kidney transplants.

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

Bolstering our regional presence during Kidney Health Month Circulation: 10,000 copies The Kidney Link newsletter and Your Health insert are published three times a year by the Quebec Branch of The Kidney Foundation of Canada. Distributed in English and French to all people suffering f r o m k i d n e y f a i l u r e, t h e s e publications provide valuable information on the Foundation’s services and activities, including the latest findings on kidney d isease and organ donation. The opinions expressed in Kidney Link and Your Health do not necessarily reflect those of the Quebec Branch of The Kidney Foundation of Canada, its directors, employees or members.

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

Yielding results through research The 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 yields measurable benefits for patients. For example, researchers at CHUM, with the Foundation’s support, recently discovered a new class of antibodies that cause severe rejection episodes following kidney transplants. Read more about this discovery on page 11.

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

Promoting well-being The combined efforts of volunteers and donors throughout Quebec, supported by a small team of skilled and dedicated employees, have enabled the Foundation to fund promising research initiatives, provide patients with better service, raise awareness of our cause among the general public and government, and secure funding from tens of thousands of donors and businesses. We should all take pride in our organization, which promotes the well-being of people with kidney disease.

Moving? Please let us know at infoquebec@kidney.ca. Articles may be reproduced provided that the source is quoted.

Kidney Link • Spring 2013

Christopher Gobeil President

Together we can make a difference

Martin Munger Executive Director

2013 WALK SPECIAL FEATURE

Personal invitations to walk The Walk For the 2013 edition of The Kidney Walk, the Foundation wanted to give voice to people who have been affected directly or indirectly by kidney disease. These personal accounts are snapshots of the lives of

Émilie Savard (Quebec) My name is Émilie Savard. I’m 15 and I’ve been involved with The Kidney Foundation of Canada for five years. Why is this cause so important to me? Because my cousin Raphael suffers from a type of kidney disease called nephrotic syndrome.

volunteers, nephrologists, transplant recipients, donors and dialysis patients who will take part in this year’s Kidney Walk to remind the public of the realities of kidney disease and promote organ donation. Join them on May 26 to help advance kidney research and promote organ donation. one, because the following year I managed to raise a lot more money! I’ve been using this fundraising technique for four years now, and every year, I manage to raise a little more. Three years ago at my high school, École secondaire Jean-Rimbault, we organized a student Valentine’s Day card sale that raised $520 for the Foundation.

Last year, my friends and I held what we Six years ago, I took part in my first Kidney called our “Kidney Day.” All day at school, Walk in Quebec City with my family. That we wore our Foundation T-shirts while time, I was just a participant. But the second going about our usual activities. Our goal Émilie with her cousin Raphael, who time around, I wanted to do more, so I went has kidney disease was simple: make our friends and fellow door to door in my neighbourhood to collect students aware of The Kidney Foundation of donations. I managed to raise a little money, Canada’s existence. I think we achieved our but collecting it this way was a lot of work. Plus, a lot of people goal, because a lot of people were interested in our cause, were suspicious of what I was doing: unfortunately, some peo- and some of our teachers even supported us by making dople don’t trust a teenager who goes around knocking on doors nations. This year, my plan is to get as many people as possiasking for money. ble to take part in our “Kidney Day” and to sell organ donation bracelets during lunch hour. I asked myself how I could raise funds while getting people to understand that I was really trying to do something worthy One day, I hope my fundraising campaign will be so successful of their trust. That’s when I came up with the idea of selling that I’ll get to hold the Foundation’s banner at The Kidney Walk Lamontagne chocolate. That idea turned out to be a really good starting line.

Claude Proulx (Montreal)

assembly in 2010 and helped set up the living donor registry.

Claude Proulx has been an organ donation resource nurse at Hôpital MaisonneuveRosemont for 11 years, and has been volunteering at the Foundation since 2005. As President of the committee tasked with raising public awareness of organ donation, Claude is involved in major projects at the Foundation.

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

“The Gift of Life Humanitarian Award, the schools project, raising awareness among cultural communities, Organ and Tissue Donation Week and the development of a living donor reimbursement program… I’m proud to be defending and promoting all these initiatives,” said Claude, who also worked on getting Bill 125 respecting organ and tissue donation adopted by Quebec’s legislative

Claude will be taking part in the 2013 Walk to raise public awareness of organ donation. “It’s also the perfect occasion to socialize and meet transplant recipients and people awaiting a transplant,” said Claude, who hopes this year’s event will be as successful as in previous years.

Claude Proulx, President of the Organ donation Public Awareness Committee of The Kidney Foundation of Canada. Kidney Link • Spring 2013

Your donation goes a long way at The Kidney Foundation

2013 WALK SPECIAL FEATURE Dr. Damien Bélisle (Saguenay)

Raphael Mimeault (St-Jérôme) Since he was just a baby, Raphael has suffered from polycystic kidney disease, which has made his kidneys much larger than normal. “Raphael was only a few months old when he contracted a urinary tract infection. An ultrasound revealed that our baby boy had a major kidney problem,” said Mélanie Bergeron, Raphael’s mother. Dr. Damien Bélisle at the Saguenay Walk

Dr. Damien Bélisle is the Head of the Nephrology Department at the CSSS de Chicoutimi (Chicoutimi Health and Social Services Centre) and has been the Honorary President of the Saguenay Walk for the past four years. When asked by the Foundation to be a spokesman for The Kidney Walk, he was delighted, seeing the role as a perfect opportunity to increase awareness of peritoneal home dialysis among patients while sensitizing the public to the realities of kidney disease. Always aspiring to put patients’ well-being first, the CSSS of Chicoutimi encourages patients to opt for home dialysis, which gives them greater freedom and autonomy, not to mention generating considerable savings for the healthcare system. “In the Saguenay, 40% of kidney patients undergo dialysis at home. At a time when an increasing number of people suffer from kidney disease, we chose a regional solution focusing on raising awareness among our patients,” said Dr. Bélisle. Awareness-raising will be paramount at this year’s Saguenay Walk. “Our goal is to show people that the Foundation’s raison d’être is to help the public and ensure that patients get the moral support they require,” said Dr. Bélisle, who also underscored the outstanding work volunteers do to make an event like The Kidney Walk happen.

For the first few years, Raphael’s illness had no major repercussions. But after four years of stability, Raphael’s condition started to deteriorate. “His blood pressure started to rise and his kidneys got bigger and bigger. They were taking up so much space in his tiny tummy that he couldn’t even eat enough,” she recalls.

After a year and a half of force-feeding Raphael just so he could get the nutrition he needed, the pain in his abdomen became too much for him to bear, so the decision was made in November 2011 to remove both his kidneys. “Raphael underwent a 10-hour operation. He was then started on hemodialysis, and finally, switched over to peritoneal home dialysis,” said Mélanie. Thanks to his fourth grade teacher, Raphael was able to keep up with his studies from home and finish his school year like everyone else. It was a challenging year for Raphael and his parents, who faced a number of hardships and an extremely busy schedule. In the spring of 2012, Mélanie Bergeron gave her son Raphael the greatest gift he could hope for: a kidney. “Raphael is doing well. He’s starting to run, skate and have fun 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 she knows 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 their role models. Our role model is our son Raphael, and we’re lucky to be with him every 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 to have an extraordinary boy who is so full of life and always a ray of sunshine, not to mention 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 donation while sharing their unique story with the public.

“Even when they have a circle of friends and family, patients feel isolated. It does them good to meet people experiencing the same realities as them, people whose lives are like their own because of kidney disease,” he added.

In 2013, the CSSS de Chicoutimi will welcome two new nephrologists, one of whom will focus on following up with transplant recipients. “We want to boost our involvement in transplantation and in living donation,” said Dr. Bélisle, who hopes to get more of the region’s physicians to help raise The Saguenay Walk’s profile, not to mention that of the Foundation. Kidney Link • Spring 2013

Raphael Mimeault, one year after his kidney tranplant

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

Together we can make a difference

Sofia Dilembo (Montreal)

“I was four years old when an ambulance took me to the hospital from my appointment with my pediatrician. I was in the final phase of kidney failure,” said Laureen Bureau. What followed was a long relationship with hospitals. That was in 1960, when she was living in Saint John, New Brunswick, with her parents and four sisters.

I never could have imagined being able to save the life of someone so close to me. I’ve known Anthony for over 10 years. We met at Dawson College and we’ve been best friends ever since. When I learned that Anthony’s kidneys had stopped working and that he had to undergo dialysis at home several times a day, it broke my heart.

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

I knew I couldn’t just sit there and twiddle my thumbs, watching him undergo all those difficult treatments. So I told Anthony and his parents that I wanted to give him one of my kidneys. Sofia with her best friend An-

Although I didn’t know if my kidney was a match for him, thony, to whom she donated a I knew something had to be done. Over the next few kidney months, I underwent a long list of tests, saw countless doctors, 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 unconditional support 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 have it for the rest of his life, and as I made that major decision, his health was the only thing I could think of. I am absolutely thrilled about what I’ve done, and seeing him enjoy life again is the best reward I could ever have hoped for.

Jacqui (right) gave a kidney to her big sister Laureen in 1985

During her adolescence, Laureen’s health stabilized, sparing her the inconvenient hospital stays. “At that point in my life, I graduated from high school, then CEGEP, and then I worked a little. I also returned to the Montreal Children’s Hospital to volunteer,” she said. The day after her 26th birthday, the condition of Laureen’s kidneys suddenly deteriorated, which made it increasingly hard for her to study; she felt very weak and lost interest in eating. “Just when I was about to move to Montreal, my nephrologist started talking about dialysis and even transplantation,” she recalled. In early 1984, her sisters got tested to find out if one of them could be a compatible donor. It turned out that her youngest sister, Jacqui, was a perfect match. Laureen received her sister’s kidney on August 8, 1985, at age 29. “My sister’s gift changed my life forever, and it helped us forge an unbreakable bond. I will be forever grateful to her,” said Laureen. Laureen has been a member of the Board of Directors of the Foundation’s Outaouais-Québécois Chapter for the past three years and a Kidney Walk volunteer for the last two years as both a fundraiser and a participant. “I’ll be taking part in the 2013 edition of The Kidney Walk and I’ll be sharing my story to raise public awareness of organ donation,” said Laureen.

Josée Parenteau (Sherbrooke) “The best Christmas present I’ve ever received arrived on December 21, 2005,” said Josée Parenteau, who was in so much pain that she was placed on the emergency transplant list to be given priority should a donor organ become available, a rare exception for kidney transplants. Josée soon received a kidney. Someone had passed away, and that person’s family had agreed to donate their loved one’s organs so that their loss could provide a future to people awaiting a transplant. This gift allowed Josée to Josée Parenteau, president of the Estrie Chapter start a new life. of The Kidney Foundation

“I want people to know that signing their health insurance of Canada cards to become potential organ donors really saves lives,” said Josée, who is well aware that she is alive today because of the kidney she received, and that her survival also meant that somewhere, a family was mourning someone they lost. She admits to thinking about and even speaking to her donor every day since she 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 transplant recipient’s family. Josée Parenteau is one of the people behind the rebirth of the Foundation’s Eastern 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 benefit dinner and The Kidney Walk, and a member of the Quebec Division’s Board of Directors. Josée’s determination, hope and dedication inspire both volunteers and staff as they strive to achieve the Foundation’s mission. Kidney Link • Spring 2013

Your donation goes a long way at The Kidney Foundation

2013 WALK SPECIAL FEATURE Christine Dufour (Gatineau) Like a lot of people living with kidney failure, Christine knows her kidneys are slowly failing. It’s September 2006. “I was getting terrible headaches that kept me awake nights and prevented me from functioning during the day. As if that were not enough, I was always tired and out of breath. I was 19, and I only cared about the here and now. I really didn’t think about the future. All that mattered to me was having fun,” she said. She knew something was wrong, but she had no idea that it was due to a serious illness that could destroy her kidneys. The doctor’s diagnosis shocked her: she could never have imagined she’d be told her kidneys would never work again. After all, she had gone to the emergency room just because of her headaches. Almost immediately, they implanted a fistula in her arm so they could start her on dialysis. To this day, she holds painful memories of that particular event. “I was in a panic, lying on the table, arms spread out, needles sticking in me. I was too freaked out to realize that it wasn’t actually painful. I just wanted them to leave me alone,” said Christine, who was afraid of being less feminine because of the scars left by the implantation of the fistula. The dialysis treatments kept coming, and so did the bad news. She learned that, because of her kidney failure, she would have to adopt a very strict diet. “I couldn’t eat any of the things I love, like chocolate, strawberries, oranges, bananas or milk. Not to mention salt and even 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 on peritoneal dialysis—Christine finally received a kidney from her father, who turned out to be a match for her. The transplant took place in the summer of 2011 and was successful. “It was going to be the last stop in a long and painful journey. Finally, the transplant was going to change everything. My father gave me something I didn’t expect: my health!” said Christine, who will never forget the summer her life changed forever.

The first months following the transplant went well. Christine finished her secretarial studies and found a part-time job. But before long, there were signs of rejection. To prevent it, her cortisone doses were increased. Although her creatinine level remained high, Christine’s state of health was relatively stable for a few months. But in the summer of 2012, the rejection recurred. “So I was started on Campath, a Christine Dufour would like to kind of chemotherapy, which fundraise more than $1,000 for was followed by high-dose cortithe Kidney Walk on May 26 sone. I was exhausted and losing hope. My stability was gone and I 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 getting better, but in the fall, she received some terrible news. She was told that she had become diabetic because of the high doses of antirejection drugs she was taking. She decided to take charge and tackle the problem 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 medications, switch antirejection drugs and adopt a new diet. “I take fewer diabetes medications. As a result, my hair gradually stopped falling out and my hemoglobin level has remained reasonable,” said Christine. Today, she is full of energy and slowly but surely regaining hope of a stable life and a healthy body. Christine will be at The Walk on May 26 to raise as much money as possible for The Kidney Foundation of Canada. Her wish is to be able to keep promoting organ donation and helping people in her region who are facing kidney failure.

The Kidney Walk

Sunday, May 26, 2013 10 par ticipating cities

On May 26, get your team together and walk The Walk with us in support of kidney health and organ donation.

kidney.ca/quebecwalk 6

Kidney Link • Spring 2013

We're behind you all the way

Your Health The Kidney Foundation of Canada, Quebec Branch

Spring 2013

Kidney transplantation and its psychological effects on patients Organ transplants are by far among medicineâ&#x20AC;&#x2122;s most technologically advanced procedures. In 2012, 252 people in Quebec received a kidney transplant, while another 923 were awaiting one. The average wait time for a kidney transplant is now over three years. These statistics clearly demonstrate the current lack of donor organs, a source of a number of transplant-related stresses. They also explain the need to carefully select potential recipients. Originally, recipients were selected according to medical criteria alone, such as tissue typing, candidate health and organ availability. Those in the medical field recognize the impact various psychosocial factors can have on a personâ&#x20AC;&#x2122;s ability to deal with the issues surrounding the various stages of the transplantation process: pretransplant, immediate post-transplant and long-term post-transplant.

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

YOUR HEALTH â&#x20AC;˘ Spring 2013

Your Health Post-transplant psychiatric complications In the month following the transplant, recipients can obtain psychological support from psychologists who specialize in organ transplantation. The mixed and poorly understood emotions that follow the transplant, such as feelings of indebtedness, guilt and being beholden to the donor, are completely normal. It is also possible to seek this psychological support during the pre-transplant period. Psychologists who are integral members of the transplantation team must have four specific competencies: expertise in evaluating psychological states and behaviours; expertise in dealing with therapeutic adherence, depression and anxiety; the flexibility to work with individuals, couples, families and groups; and research skills. As a result of their professional training, of the personal qualities that make them competent psychologists, and of their ability to work in a multidisciplinary setting, psychologists play an essential role in optimizing both patient care and the medical and scientific progress of transplants.

“It is important to understand that transplants are not a cure; however, they are the only alternative to dialysis, and they can involve a difficult adjustment. Many patients, especially young ones, expect their transplant to be a cure that will restore the life they once led. This, despite doctors’ insistence on both the importance of preparation and the fact that the transplant will not be a long and smooth road. But for patients awaiting a transplant, these words often fall on deaf ears. We have also noted that many patients have a blasé attitude toward kidney transplantation because

YOUR HEALTH • Spring 2013

transplants are now so widely available in our society. As a result, potential organ recipients rarely consider the negative effects they may experience and often feel depressed in the six months that follow the transplant, especially young patients and those on peritoneal dialysis.” Dr. Marie-Josée Hébert, researcher at the CHUM Research Centre (CRCHUM) and Director of the Organ Transplant Program at Université de Montréal.

The psychological consequences of kidney transplantation include: • An episode of depression in those who idealize the transplant. Often they mourn their unrealized dreams, such as that of regaining their full health after the transplant. They also feel guilty for not being able to contribute to society, a feeling patients often have trouble expressing. • Difficulty accepting the transplanted organ as a natural part of themselves, seeing it instead as a foreign body. • Anxiety about the potential rejection of the transplanted organ and the return to dialysis the rejection would entail. • Potential mood disorders linked to the transition from dialysis patient to transplant recipient. Some patients mourn their former life and the relationships they had developed at the hospital. In the case of deceased-donor kidneys, transplant recipients may also mourn the donor. • However, positive psychological outcomes are also possible, such as feelings of accomplishment, the ability to maintain a sense of self into the future, the quality of the social support system and a sense of independence.

Your Health Issues and psychological effects occurring during the various transplant phases PHASE

ISSUE

PSYCHOLOGICAL EFFECTS

Pre-transplant phase Diagnosis of kidney failure

• Shock, certainty regarding the seriousness of the condition • Uncertainty regarding meeting eligibility criteria • Availability of an organ (or lack thereof) • Awareness of the seriousness of the condition and complications • Competition with other candidates on the list • Confronting death, death of other candidates • Awareness of the donor’s death • Shrinking of and alienation from social circle, marital tension • Extended wait

• Acceptance or refusal/denial • Anxiety, fear • Depression • Feelings of guilt • Grief • Isolation • Interpersonal problems • Discouragement, hopelessness

Selection Placement on the waiting list

Pre-op phase

• Awareness of the surgical procedure, • Persistence and/or aggravation anaesthesia, hospitalization of previous reactions • Odds of success

Immediate post-transplant phase Biopsies and follow-up

• Potential improvement of health and quality of life • Lifestyle changes • Use of immunosuppressants • Wait for results

• Awareness of a “second life” • Relief, hope • Reduced symptoms of distress • Coping style • Consistent treatment adherence or non-resurgence of anxiety

Post-transplant to long-term phase

• Social reintegration • Readjustment to previous roles • Family support • Acceptance of the organ • Acceptance of body image • Potential complications

• Impact on self-image • Abandonment of “sick person” role • Powerlessness • Dependency/autonomy • Resurgence or emergence of psychopathological disorders

The psychological process of the transplant Each step in the transplant process involves its own challenges. First, there’s the shock that comes with receiving the diagnosis of end-stage organ failure requiring a transplant. During the selection process, patients may experience fear and anxiety about whether they meet the medical criteria governing acceptance as a potential recipient. Once on the organ waiting list, patients experience a range of emotions: fear that no compatible organ will become available; growing awareness of both the gravity of their illness and their own mortality;

decreased ability to function in all areas of life; alienation from their social circles; tension with spouse and family as a result of the omnipresent uncertainty; and an increasing sense of discouragement and hopelessness as the wait drags on. In this phase, patients also experience feelings of guilt, often because they perceive that they are competing with other potential transplant recipients, or because by hoping to receive an organ, they are indirectly hoping a potential donor will die. As the surgery approaches, fears become more specific—the procedure, anaesthesia, hospitalization and the odds of success. During the period immediately following the transplant, recipients experience relief and hope, which often reduces anxiety; however, for some, the anxiety returns quickly as the first biopsies are conducted to assess the state of the transplanted organ. Over the longer term, the acknowledgment of this “second chance at life” leads to growing awareness of the need for treatment adherence, of the risks of various complications (episodes of rejection, readmission to hospital, side-effects from medication), of the lifestyle changes that need to be made, and of the challenges of reintegrating into society. As a result, all candidates are expected to experience some degree of psychological distress during the transplantation process. In fact, some may even develop a psychiatric disorder. A number of factors determine the reactions patients may have: various forms of stress, as described above, which tend to be amplified in patients who are more ill; the psychopathological potential, i.e. individuals’ current mental state and their personal and family history of psychiatric disorders; and the resources available to patients, especially the quality of available social support. In this respect, we use a biopsychosocial model to explain each patient’s individual risk of developing a psychological reaction to the issues surrounding the transplant. YOUR HEALTH • Spring 2013

Your Health

For decades, the line between mental health and physical health has been blurring. Psychologists have long been aware of the impact that physical health problems can have on mental health, and vice-versa. Through their perseverance, psychologists have succeeded in convincing the health sector of the importance of treating patients’ physical and emotional selves, and patients are all the healthier for it.

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

and not in response to real or perceived family or social pressure. Psychologists therefore help potential donors explore their motivations, the nature of their relationship with the recipient and the reactions they expect to have in the event that they are deemed ineligible as a donor or if the transplant fails. Psychologists also ensure that donors know what to expect in terms of the transplant procedure and their own surgery. Paradoxically, in kidney donation, donors often experience the most postoperative pain—their surgery is considered more intrusive—while getting less attention and family support 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 identifying cases involving imbalances in family dynamics or personality issues, e.g. wanting to donate an organ to repair their reputation as the black sheep of the family or in the hope of filling a void. In this case, the psychologist’s involvement stimulates dialogue that can help address any non-relevant expectations.

Sources :

La psychologie de la santé, les enjeux psychologiques de la greffe d’organe. Achille, Marie, professor and researcher in the Psychology Department at Université de Montréal. Psychologie Québec, January 2002. With Dr. Marie-Josée Hébert, researcher at the CHUM Research Centre (CRCHUM) and Director of the Organ Transplant Program at Université de Montréal. Transplant Québec, 2012 statistics.

YOUR 20132012 CAHIERHEALTH SANTÉ••Spring Printemps

Patient Services To receive documentation and information about the programs offered by the Quebec Branch of The Kidney Foundation of Canada, refer to the “Patient Programs and Support” and “Organ Donation” sections of our Web site at www.kidney.ca/quebec, or contact: Hélène Boisvert, Programs Director The Kidney Foundation of Canada – Quebec Branch 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5 Tel.: 514-938-4515, ext. 224, or 1-800-565-4515 E-mail: helene.boisvert@kidney.ca

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

MedicAlert bracelets

Financial aid program This program was created so that hospitals could help patients in dire financial straits when no other options are available. Funds can be used to reimburse certain expenses incurred by patients, such as the costs of travel, accommodation or special food.

Scholarships These financial Bursaries are given to dialysis patients or kidney transplant recipients pursuing college or university education. The application deadline for the fall 2013 semester is September 30.

The Foundation’s Kidney Kids Camp This year’s Kidney Kids Camp will take place from August 3 to 9. It gives kids from 8 to 18 years old who suffer from kidney disease a chance to enjoy a week of summer camp fun. Dr. Marie-José Clermont, nephrologist at Montreal’s Sainte-Justine Hospital, will be on site the entire week with a team of nurses from the Montreal Children’s and Sainte-Justine hospitals.

The Foundation helps purchase stainless-steel MedicAlert bracelets for kidney patients who do not have the financial means to do so.

Pagers Thanks to an agreement between The Kidney Foundation of Canada and Bell Mobility, people awaiting a kidney transplant can rent a numeric pager with unlimited service in a Bell Mobility coverage area, free of charge for 12 months. Important Note: Upon reception of your pager, don’t forget to give your number to your transplant Center to be reach as quickly as possible in case of emergency.

2012 Kidney Kids Camp

The Kidney Link newsletter is a hit with readers That was one of the findings of the fall 2012 survey of 7,000 patients and Kidney Link newsletter subscribers. Over 70% of patients knew of and read the newsletter regularly and are very satisfied with its content. Recently, we decided to feature the stories of people whose lives have been impacted directly or indirectly by kidney disease. It was something our readers were asking for, and we heard them loud and clear. The “Living with Kidney Disease” patient manual and MedicAlert bracelets are also among the 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 paper version of our publications over the digital versions such as the Web site. And finally, hospitals appear to be the main vehicles through which patients hear of the services the Foundation delivers. It is important to the Foundation to know how satisfied patients are with the programs and services we offer. That’s why we regularly ask opinions of patients.

The foundation of kidney care

Kidney Link • Spring 2013

News from the Chapters MAURICIE/ CENTRE-DU-QUÉBEC The Kidney Health Tour went to Trois-Rivières on March 1

GATINEAU A success for the Outaouais-Québécois Chapter’s annual general meeting On March 10, the Outaouais-Québécois Chapter’s AGM was held at the Cabane en bois rond in Gatineau. Over 35 people took part, including patients, friends and members of the Foundation’s medical staff. Recognition certificates were handed out and an income tax workshop was held at the meeting. Over the course of the day, a new, sevenmember Board of Directors for the Outaouais-Québécois Chapter was elected.

Save the Date Daniel Turcotte (left) and Jules Buisson, President of the Mauricie/Centre-du-Québec Chapter, being interviewed by Cogeco in Trois-Rivières during the Kidney Health Tour

On March 1, the Foundation’s kidney health screening centre made a stop in Trois-Rivières. This successful day of awareness-raising helped some 100 people get their blood glucose level, blood pressure and body-mass index (BMI) measured, while finding out if they are at risk of developing kidney disease. Chapter board members Jules Buisson, Daniel Turcotte and Sabrina Nimour used the occasion to make visitors to the Centre Les Rivières shopping mall aware of the importance of organ donation and the realities of kidney disease.

• 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

golf

Did you think of making a donation in your will?

tournaments

June 8 - Cunningham’s Golf Tournament at Hudson’s Falcon Golf Club (for information, contact Linda Pellas at 514-938-4515, ext. 227) June 10 - Quebec City Chapter Golf Tournament (for information, 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) Kidney Link • Spring 2013

Together we can make a difference

Organ Donation The Kidney Car program has fans of all ages We are delighted to publish a letter we received from Audrey Soulier, a 6th grader at Montreal’s École primaire internationale La Vérendrye who wrote about the Kidney Car program and how much it means to her.

Kidney Car is a Foundation fundraising program launched in 1995 in Quebec. The concept is remarkably simple: if you have an old car you want to part with, you can donate it to The Kidney Foundation of Canada. The Foundation has partnership agreements with 18 auto recycling centres serving Quebec, which are mandated to tow your vehicle for free. Once your old beater is off the road, it is broken down into parts that are fully recycled. You’re not only contributing to a good cause, you’re helping reduce greenhouse gases and doing something good for the environment. In addition to free towing, you’ll get a tax receipt from The Kidney Foundation of Canada for your donation.

At our school, we ha d to create an exhibit. I decided to do mine on the car industry. Whil e I was do ing my researc h, I found infor mation about yo ur organization. I lea rned that, in addition to recycling cars, yo u su pport research progra ms that focus on kidney disease. I am writing this letter to yo u to congratulate yo u. Recycling cars is an alt ruistic action that’s go od for the environment an d the planet. With the cars yo u recycle, yo u allow new cars to be built. It’ s a wonderful thing to do, an d yo u’re pro viding mo ney to fund research into kidney disease, which is even better! The donations receive d through the Kid ney Car program will surel y save the lives of ma ny people. Yo u are do ing something amazing for people who are sick. To thank the people wh o have donate d their cars, yo u send them tax re ceipts. By reimbursing a part of the income taxes of the person who donate da car, yo u are enco uragin g other people to recy cle their cars too.

Lastly, I want to assu re yo u that the day my car needs to be recycle d, I will send it to yo u. W hat yo u are do ing is extremely generous an d, thanks to yo u, more people can live he althy lives. Au drey So ulier

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

IMPORTANT NOTE The 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 in electronic (PDF) format, simply register at newsletter.qc.kidney.ca. Kidney Link • Spring 2013

Your donation goes a long way at The Kidney Foundation

Organ Donation The Kidney Foundation of Canada takes a leadership role in advocating for policies and programs to meet the needs of people living with chronic renal insufficiency. Every year, approximately 250 transplants are performed in Quebec. Yet the number of patients on the province’s transplant waiting list keeps growing, and every year, people on that list die while awaiting an organ. The number of people suffering from kidney failure is still climbing, and all signs indicate that the trend is not going to ease anytime soon, due mainly to the aging population and the increase in the incidence of diabetes and high blood pressure, which are precursors to kidney disease.

I want to officially endorse and support The Kidney Foundation of Canada in its demands to the Quebec Government to favor the appropriate mechanism to expand the availability 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 returning it in the enclosed envelope. • Transplant recipients, whose life expectancy and quality of life improve considerably, can once again take part in everyday activities, including returning to the labour market

Because we consider this situation unacceptable, the Foundation has been advocating for a number of years in favour of increasing the number of transplants.

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

The Foundation is working to increase the number of kidney transplants performed each year, from both deceased and living donors, to 350 within the next three years.

• Medical personnel who perform transplants more regularly can make sure all of society benefits from their high-level expertise while potentially improving transplantation techniques

Work on achieving this goal began in 2012, when the Foundation sent a letter to Quebec’s main political parties reminding them of the urgency of the situation. This was followed by the publication of an economic report clearly demonstrating the financial advantages of transplantation. Other initiatives are under way to convince the province’s health minister and other key healthcare system stakeholders of the benefits of promoting transplantation.

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

Kidney transplantation is the ideal solution in every respect:

• Governments benefit from greater income tax revenues and lower healthcare costs, which provide greater budgetary leeway Improving quality of life for people with kidney disease and their loved ones is a vital issue. The Foundation seeks to partner with all stakeholders interested in working to improve the kidney transplant situation in Quebec. Consequently, the Foundation fosters collaboration with the public and governments.

Foundation luminary Michel Perron marks the 20th anniversary of his transplant Transplant recipient Michel Perron is a champion on several fronts, but he acknowledges his fortune with great humility: “Had I not been on the receiving end of a precious kidney, I would have been forced to stop working and my life would have taken a very different turn.” This 80-year-old Quebec businessman started on dialysis at Montreal’s Royal Victoria Hospital in 1992. At the time, people over 60 were not eligible for transplants, but because his son had a kidney to give, the surgeons agreed to perform the operation.

Michel Perron in 1994 during his North Pole expedition. He celebrated the 20th anniversary of his transplant on April 7, 2013. Kidney Link • Spring 2013

Michel returned to work only eight days later. He celebrated his 62nd birthday and the first anniversary of his transplant by raising The Kidney Foundation of Canada’s flag at the North Pole in 1994.

At his wife’s suggestion, he turned his adventure into a fundraising campaign, and so the Michel Perron Research Fund was born. “When I got back, I found out that we had raised $250,000!” he said. Twenty years later and with a fully functioning kidney, Michel regularly visits dialysis patients in his community. “Because of my own story, I feel I have a responsibility to give hope to patients on dialysis and encourage them to undergo a transplant,” said Michel, a father of seven and grandfather of 22. “Donating a kidney today is much easier than it used to be, both for the donor and the recipient. Transplant and dialysis technology has really improved over the years.”

Together we can make a difference

Research Researchers uncover genes responsible for Dent’s disease Dr. Mathieu Lemaire is currently pursuing a PhD at Yale in the laboratory of Dr. Richard Lifton (Investigative Medicine Program), which has established an international network to study Dent’s disease. Dr. Lemaire will use cutting-edge genomic technology known as whole exome capture to make a snapshot of nearly all the human genes at once to identify the genes involved in Dent’s disease. This project will be the first time that the technology will be used on a large group of unrelated patients. Dent’s disease is a genetic condition characterized by the dysfunction of the proximal renal tubules of the kidney. The proximal tubule is one of the most important parts of the kidney filtration system as it plays a key role in transferring 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, patients become very sick because the body can no longer retain these vital elements. Unfortunately, genetic disorders affecting the proximal tubule are very serious and cannot be cured. To date, two genes have been identified as playing a role in the onset of Dent’s. However, researchers have found that a significant group of people who suffer from an illness closely resembling Dent’s disease show no signs of mutation in these two genes, which would indicate that other genes are likely linked to Dent’s disease. Finding novel disease-causing genes for Dent’s disease will have important diagnostic implications for these patients and may lead to new therapies as well as furthering our general understanding of proximal tubule function.

Doctors at the CHUM Research Centre have discovered a new cause of rejection in some kidney transplant recipients A team led by Dr. Marie-Josée Hébert at the Centre hospitalier de l’Université de Montréal Research Centre (CRCHUM) has discovered a new cause of organ rejection in some kidney transplant patients. Her team has identified a new class of antibodies — anti-LG3 — which when activated lead to severe rejection episodes associated with a high rate of organ loss. This discovery, which holds promise for organ recipients, was published in the online version of the American Journal of Transplantation. Dr. Marie-Josée Hébert is

Rejection is one of the major obstacles a researcher at the CHUM to organ transplantation. For the most Research Centre (CRCHUM) part, it occurs when the recipient’s and Director of the Organ immune system recognizes the Transplant Program at Université de Montreal. She transplanted organ as a foreign body has been working with The that must be eliminated. However, Kidney Foundation of Canada even when there is a good donoras a speaker specializing in recipient immunologic match, the kidney transplantation. recipient’s immune system can attack the transplanted organ’s blood vessels. Called acute vascular rejection, this phenomenon often leads to a high rate of graft loss. Dr. Hébert’s team has described anti-LG3, an antibody that some patients produce to attack LG3, as a protein that plays an important role in vascular repair and regeneration. “In these patients, the secretion of 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 transplanted organ is hindered, if not interrupted, leading to impaired kidney function and even loss,” explains Dr. Hébert. By identifying the heightened presence of anti-LG3 antibodies in patients prior to transplantation, researchers will be able to predict the development of severe rejection episodes. “These results are quite exciting,” notes Dr. Hébert, “and suggest that new therapies aimed at eliminating LG3 antibodies prior to transplantation could reduce organ rejection or limit its severity.”

Dr. Mathieu Lemaire received his MD from McGill in 2004 and completed his Pediatric Nephrology training at Sick Kids (Toronto) in 2009. Dr. Lemaire is a recipient of a 2010-2013 Krescent Fellowship.

Given that LG3 is present in all blood vessels and thus in all transplanted organs, Hébert’s results could also explain rejection of other types of transplanted organ, such as the heart, lung and pancreas. Source : Centre hospitalier de l’Université de Montréal (CHUM) Research Centre Kidney Link • Spring 2013

Your donation goes a long way at The Kidney Foundation

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

The Kidney Foundation of Canada is calling upon the Quebec Government to take steps to reduce the social and economic impact of kidney failure in Quebec. With the incidence of renal failure on the rise, The Kidney Foundation of Canada demands that organ donation be a priority and that the number of kidney transplants performed be increased to 350 a year (in 2012, 252 transplants were performed).

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