the living proof - canadian transplant · neil folkins, membership director, c/o 11649 st albert...
TRANSCRIPT
The Living ProofCanadian Transplant Association www.organ-donation-works.org
Issue #32 Winter 2010
The Nicholas Sidorenko Story
The Gift of Life Returned
In the true spirit of the season, remember the Gift of Life and talk to your family about organ donation.
Exercise Exceeds Expectations
Kidney March: 100 KM ... 3 Days
Worlds Biggest Walk
Pet Care Safety Tips
1
President - David [email protected]
Past President - Janet [email protected]
Vice-President West - Margaret [email protected]
Vice-President East - Amy [email protected]
Treasurer - Debbie [email protected]
Secretary - Kathy [email protected]
Membership Director - Neil [email protected]
Team Manager - Heather [email protected]
WTGF Councillor - Heather [email protected]
REGioNAL DiRECToRS
BC - Margaret [email protected]
AB - Jennifer [email protected]
SK - orest [email protected]
oN - Rob [email protected]
QC - Gaston [email protected]
NB - Mark [email protected]
Inside This Issue ...President’s Corner ...................................................................................... 3
News & Notes ............................................................................................. 4
CTA Membership Growing .................................................................... 4
The Nicholas Sidorenko Story .............................................................. 5
The Gift of Life Returned ........................................................................ 6
World’s Biggest Walk ........................................................................... 7-8
Exercise Exceeds Expectations ............................................................ 9
Kidney March: 100 KM ... 3 Days ........................................................ 10
I Finally Get It ............................................................................................. 11
57 Successful Kidney Transplants in Canada Thanks to LDPE Registry ............................................................................................ 11
17 Kidney Transplant Athletes Receive the 2010 Founder’s Award ...................................................................................... 12
CTA’s Own Linda Rowe Receives Volunteer Award ................... 12
Pet Care ......................................................................................................... 13
Canadian Transplant Games Quebec 2010/Jeux Canadiens Des Greffés Québec 2010 ..................................................................... 14
MEMBERSHIP FEES
One Year Individual Membership $30.00
Two Year Individual Membership $50.00
Lifetime Individual Membership $300.00
One Year Family Membership $75.00
A family membership will include all related adults and children who live at the same address.
Neil Folkins, Membership Director, c/o 11649 St Albert Trail NW, Edmonton, AB T5M 3L6
Do you have any articles or pictures to submit to the Living Proof newsletter?
If so, please forward to: Jennifer at [email protected] or Amy at
[email protected]. The deadline for the next edition is February 28, 2011.
Articles should be in Word doc or docx format (300 words or less) and pictures
as high resolution jpg files.
For regional reports and other interesting articles check out “The Members
Corner” on our website www.organ-donation-works.org (under About CTA).
An electronic edition of the newsletter will be available in between two
hard copy editions per year. If you have any concerns please contact CTA
at 1-877-779-5991.
2
Merry Christmas and Happy Holidays to All,
As we bid farewell to a wonderful 2010 and welcome the New Year, I would like to take this opportunity to thank everyone who has supported the Canadian Transplant Association (CTA) and participated in organ and tissue donation awareness activities in your communities throughout this past year.
When we volunteer for a specifi c event or organization, we surrender our time to something we believe in and are passionate about. Th e CTA has been privileged in the past 23 years to have many great people step up to volunteer to keep alive the dream of Gloria Santini and other founding members of the Association - the dream of promoting organ donation and showcasing the active and healthy lifestyle that can be achieved after a successful transplant.
One of those special people is Janet Brady who has played a major role in the growth of the CTA. Janet has spent 20 years volunteering at diff erent levels of our organization as well as numerous other local boards - all while raising a family and maintaining a full-time executive position at Fanshawe College. Now, recently retired from Fanshawe, Janet is looking forward to spending more time with her family and friends and taking time to enjoy the little things in life.
December 31st, 2010, marks the end of an amazing era for Janet as she steps down from holding an active role on the CTA National Executive Board.
We will continue into the next decade developing the CTA into an organization that provides the most for its members while building and maintaining national organ donation awareness initiatives. But we know there are not enough volunteer hours in the day to even complete some of the tasks already begun. With the support of the Board, I have asked Janet if she would consider staying on, under contract, to complete some very important projects namely:
• to complete a Bid Proposal Package for the Canadian Transplant Games • to create a comprehensive Games operations manual for future host cities• to complete an orientation manual for new/potential Regional Directors • to establish the criteria and responsibilities for a ‘Consultant/Development Advisor’ position for the CTA, a position we
envision would include writing grant/fundraising proposals, membership development and organizational support
We are pleased to announce that Janet has accepted the proposal and will be sharing her time and her wealth of knowledge and experience to help us bring the CTA to the next level. We are looking forward to working with Janet in the New Year toward the completion of many of our objectives.
I wish everyone a very merry holiday season and a New Year fi lled with health, happiness and good will.
All the best,
Dave
President’s Corner wDavid Smith, Kidney Recipient, Edmonton, AB
3
News & Notes
CTA Membership Growing
World Transplant Games Sweden 2011 UpdateThe Sweden 2011 organizing committee hopes to have their registration for the XVIII World Games, June 17–24, 2011, open by the end of December. Please check their website for the costs and time lines for registration www.wtg2011.com. If you are interested in going to the Games please contact Team Manager Heather Fisher at [email protected] or 519-642-1645. Please indicate which sports you are interested in, and whether you need a doubles partner or want to play on a team sport. Quebec Regional Director Gaston Martin has a contact who works with a travel agency affiliated with Hydro Quebec COOP who may be able to help arrange flights to Sweden. If you have not yet looked into the flights for Sweden, Ms. Laura Castillo may be able to help you. She can be reached at 1-800-363-4940 or 514-356-3156.
Volunteers Wanted to Assist Team Canada for the XVIII World Transplant GamesVolunteer position for Youth Assistant: Priority will be given to applicants with the following qualifications:
1) Previous experience volunteering at both the National and World Transplant Games. 2) Previous experience working with children and developing youth programs for ages 5–17. 3) Bilingual - French and English - written and spoken word an asset. 4) Good interpersonal and organizational skills.
All those interested in this position please contact Team Manager Heather Fisher at [email protected] or 519-642-1645 by January 15, 2011. Team Canada is also looking for a volunteer physician and volunteer massage therapist to accompany the team to Sweden. Contact Heather Fisher above for more information. All volunteers must be able to travel to the games in Sweden, June 17–14, 2011.
The Do!nation ProjectThe CTA will be participating in the Do!nation Project, a nation-wide short film contest whose ultimate goal is to urge Canadians to become organ donors. The films will be judged by celebrities such as Rick Mercer, Margaret Atwood, Sarah Polley, Ron Man and David Cronenberg. The contest will launch in the Fall of 2011. See www.donationproject.ca for more information.
Transplant Quebec NewsletterThe Transplant Quebec newsletter is now on line and features many photos from the 2010 Canadian Transplant Games. You can download their newsletter by visiting www.quebec-transplant.qc.ca, or by clicking here.
Each year that we host Canadian Transplant Games, I see tremendous growth in our membership and in the public’s interest in organ donation and transplantation - especially in the hosting province. As Membership Director, I have had the privilege to meet many of you at World and National Games. Our membership has grown again with this year’s Games in Quebec City. Our Association may not be large but we keep growing each year and have now passed the 500 mark. Our 530 members include several friends from south of the border in
the USA. Here is the break down by province:
British Columbia 50 Alberta 76 Saskatchewan 46 Manitoba 9 Ontario 223 Quebec 106 New Brunswick 8 Nova Scotia 4 Newfoundland/Labrador 3 United States of America 5
Each year membership renewals have been mailed to families or individual members. However, if you would prefer to receive your renewal forms electronically, please e-mail me at [email protected]
I wish all our members both new and old a very Merry Christmas and Happy Holidays. And, remember this season, “As transplant recipients, we have a special view of living and giving”.
– Submitted by Neil Folkins, Membership Director
4
The Nicholas Sidorenko StoryTh e following is an excerpt from an article Nick wrote in July 2005.
“My story begins in my fi rst semester at John Abbott College in the fall of 2001. Late one November evening, I was rushed to emergency at the Lakeshore General Hospital. Th is was my fi rst experience in a hospital.
After three days at the Lakeshore Hospital, I was transferred to the Royal Victoria Hospital for intensive cardiac care ... they said I had viral cardiomyopathy, a heart muscle disorder in which the ventricles are enlarged and unable to pump enough blood to the body ... despite medications to strengthen my heart ... I began to have arrhythmias, where my heart would beat uncontrollably. By December, doctors surgically inserted a defi brillator to regulate my heart’s rhythm. Th ough it gave me some stability, I was not able to return to my regular activities or go to school. Walking up a fl ight of stairs was a challenge. In February 2002, my name was added to the heart transplant list. I was put in a tough situation, but had no other choice but to accept.
With so few donors in Canada, I knew it wasn’t going to be easy. As my health became frail, I had ... to go on a mechanical heart to sustain me until a donor could be found. Mechanical hearts had been used before, but a patient could not stay on one forever. I was on mine for 11 months. On May 11, 2003, after waiting 15 months for a heart, I fi nally got the call for a potential match. After a few months of recovering my strength, I was able to get back to playing sports and living a normal life. Th at September, I returned to college to ... pursue a career in health sciences.
I have been promoting organ donation in the community and in schools by telling my story to all who will listen. Th e hospital calls me regularly to mentor patients on mechanical hearts and those
going through the transplant process. Heart transplant patients, their families and the medical team at the Royal Victoria Hospital have a special bond.”
By the fall of 2003, inspired by his daunting journey, Nick returned to college to pursue a career in health sciences. Nick continued to work part time outside the classroom and, we are told, left a lasting impression with staff and teachers as a caring, courageous and upbeat young man who was an inspiration to many.
Th e World Transplant Games in London, Ontario, in 2005, introduced Nick to a special community of people. He competed in golf and volleyball and formed friendships with many of his fellow Canadian teammates. Th e 2007 Canadian Transplant Games in Edmonton, Alberta, built on his interest in competition and strengthened friendships that spanned the country.
After graduating from John Abbott College in 2005, Nick attended McGill University, studied physiology and moved downtown with three roommates. Th ere, he joined the Ex-Yugoslav Group, learned the Serbian language and studied in Belgrade for 6 months.
Unfortunately, 6 years after his heart transplant, Nick’s new heart began to fail. It soon became evident that his only option for long-term survival was to receive another heart; he was back on the heart transplant list. Nick decided to indulge his love of travel and see more of the world: Chicago with his parents, Las Vegas and Kelowna with uncles, Ireland with the Weil family, Germany with the Menz family, and Italy, Croatia, and Serbia with his Serbian friends. Nick was always surrounded by the best of friends and, despite health challenges, remained courageous, and actively pursued interests in basketball, golf, video games, cars, music, designer clothes, and gourmet food. He was an eloquent and passionate
spokesperson for organ transplant donation.
Nick passed away on October 10, 2010, at the family chalet on Lake Notre Dame in the Laurentians with his parents by his side. Nick’s parents Cathy and Alex, his sister Alexandra, and our family and friends have been over whelmed by the enormous outpouring of sympathy extended to us. So many attended the visitation and the funeral service and we continue to receive many thoughtful and comforting cards and e-mails.
Nick’s transplant story was captured in a 2003 documentary by Carolyn Van Vlaardingen for CTV Montreal called “In a Heartbeat.” On learning of Nick’s passing, CTV aired a follow-up story on October 15, 2010.
At Nick’s funeral on October 15, 2010, Nick’s friend Matthew Riggs performed and adapted the lyrics to “Live High” by Jason Mraz.
Th e Nicholas Sidorenko Memorial Scholarship has been created in Nick’s honour. c/o Th e John Abbott College Foundation 21275 Lakeshore Road Ste-Anne-de-Bellevue, Quebec H9X 3L9
– Submitted by Cathy Sidorenko, Nicholas’s mother
5
The Gift of Life Returned: Student Donates Kidney to FatherRhekia Fahssi, a 20-year-old SAIT cooking apprentice, will donate one of her kidneys to her father, Saad, on December 8, 2010. “Even though I’m scared, it’s going to be so good to have my dad back, she says. To see him healthy and free is going to be more than worth it. My dad is the cream of the crop. I mean, he has to be; otherwise I wouldn’t be giving him my kidney.”
Rhekia’s father, Saad’s health problems began in April 1991 when he drank contaminated water in his home country of Morocco. When the family returned to Canada, Saad went to the doctor with a swollen ankle. Blood tests revealed both his kidneys were failing, and the Fahssi family began their journey into living with dialysis. He was in and out of the Foothills Hospital for dialysis up to 15 hours a week. “I went at least once a week with him as a kid,” Rhekia says. “I didn’t understand why he had to be hooked up to a machine all the time. I wanted to play with him, but he was attached to like fi ve diff erent IVs.” When Saad was off the dialysis machine, he and his daughter
went fi gure skating, swimming and out to movies trying to live as normally as possible. In 1994, Saad received a kidney transplant and was able to come off dialysis. “Th ey told me the kidney would last fi ve to 10 years and it lasted me 13,” Saad says. “But a transplant is not a cure; it’s only therapy.”
But, dealing with kidney disease was not the only thing on Saad’s plate. In 1998, he and his wife divorced and his only daughter went through a period of rebellion. From age 13 to 16, Rhekia’s life was out of control–sleeping on people’s couches, doing drugs with a rough crowd. “I didn’t have to think about the real world while I was high,” Rhekia says. But at 16, the self-confessed Daddy’s girl had a drug-induced panic attack and called her dad to come rescue her.
Th at night, Rhekia moved in with Saad. He kept her on a short leash, hired a drug counselor for in-home therapy and, after a year of living under his watchful gaze, Rhekia moved out on her own, drug-free. “He saved my life,” says Rhekia. “If it weren’t for him stepping in and being there for me, I wouldn’t be here today. Th e least I can do is give him my kidney in return.”
Rhekia off ered her dad her kidney when she was 16 and, again at 17. He refused, saying the risks were too high. “As a parent, you never want to fi nd yourself in that position,” Saad says. “It’s supposed to be the other way around. A parent is supposed to do everything they can for their child.” When Rhekia turned 19, she went to the hospital, applied to become a living organ donor and began the required testing. On Father’s Day, she cooked dinner and told Saad she had a gift for him that he couldn’t have just yet. When she told him she’d begun the donation process, Saad struggled with whether or not he’d let
her go through with it. “Th ey’re going to cut a chunk out from her belly button to her spine and remove a healthy organ,” he said. “Her recovery will take longer than mine, and she will have more of a struggle than me. As a parent, you don’t ever want to see your child in pain and that’s what I’m still struggling with. But when she told me she wants me to walk her down the aisle one day, that’s what put it all in perspective for me.”
Rhekia and her father are a perfect genetic match, and the chances of the transplant being successful are 95%. Still, there remains a risk that Saad’s body will reject the donor kidney, or that Rhekia might experience complications in her remaining kidney and end up needing a donor kidney herself. As they prepare for the upcoming surgery, thoughts of a better future keep the fear at bay. “Being on dialysis has taken a lot of time away from my kids, and I’m looking forward to having more freedom,” Saad says. “If there’s anything I can take from this experience, it’s that I’ve grown a lot closer to my children.”
Rhekia’s recovery time is six weeks. She has time off work and her SAIT classes don’t resume until May. If the surgery goes well, Saad and Rhekia plan to return to Morocco in the summer to visit family. “Th ere’s a fear that says I got sick in Morocco so I shouldn’t go back,” Saad says, but if Rhekia had her way, she’d be living there already, and you can’t let fear hold you back.” “Even though I’m scared, it’s going to be so good to have my dad back,” Rhekia says. “To see him healthy and free is going to be more than worth it.”
– Edited from: Emily Kreiberg, News Editor for Th e WEAL Weekly Newspaper
of the SAIT Student Association, November 15, 2010
6
World’s Biggest WalkTh e 3rd annual World’s Biggest Walk was held on October 31, 2010, and Canada was quick to join communities around the globe walking 5 KM to raise awareness of the critical need for organ and tissue donation worldwide.
In Vancouver, BC, another 30 walkers enjoyed the beautiful surroundings at Rice Lake in the Seymour Demonstration Forest. Along with family, friends and living donors, 12 recipients completed the 5 km walk – one had a double lung transplant only four months before, another was just seven months post heart transplant. It was so exciting to have them attend the walk, their fi rst athletic event since their transplants. Afterwards, the walkers stayed for coff ee, snacks and prizes
– overall a great day to enjoy some exercise and fresh air, raise public awareness for organ donation, and make new friends who share a common bond. Th anks go out to Cori Knowles of Astellas and local community sponsors for their support including the Rice Lake Park rangers who displayed organ donor registry cards and allowed CTA to use the park without cost.
It seems that the sun shone on everyone’s walk. ‘Next door,’ in Calgary, AB, more than 70 transplant recipients and supporters enjoyed a lovely afternoon
at Prestwick Pond in McKenzie Towne. Donning “transplant green,” participants walked three laps of the pond to mark the 5 km distance. Everyone enjoyed the fellowship, hot chocolate, coff ee and tasty treats in McKenzie Towne Hall afterwards. Walkers reviewed the awareness and information materials and took the time to meet new friends and connect with fellow transplant recipients. Th e atmosphere was relaxed and social, but the message was clear and serious. Organ donation is a precious gift, a second chance at life. Transplant recipients celebrate this miracle every day to honour their donors and to show the world that organ donation works.
In Edmonton, AB, a small but determined group of about 30 transplant recipients, family, and friends gathered at the University of Alberta campus to enjoy the beautiful blue skies and discover how much fun it can be to work together for an important cause. A pirate, a cycling Transformer, a baby skunk, and a couple of real ghouls joined the group in the spirit of Halloween. Walkers waved signs and green pom-poms while chanting “Organ Donation Works” to the delight of the Global TV cameraman. Afterwards, we all enjoyed the donated snacks, beverages and prizes. Th ank you to all who participated and for the ongoing support of our local business and television supporters.
When a young woman from Peace River, AB, told her mother she wanted to be an organ donor, she had no idea how soon her mother, Maria Stranaghan, would be called upon to comply. Barely one year later, May 7, 1993, 18 year-old Tasha died in a car accident and, true to her promise,
Maria was instrumental in seeing that her daughter helped at least seven organ and numerous tissue recipients. Now, more than 17 years later, Maria remains a busy advocate for organ donation. Among other events, Maria organizes Peace River’s participation in the World’s Biggest Walk – community members tie green ribbons along the river-front walkway, local students design a commemorative banner (Glenmary School this year), and stories are prepared for local media. Several years after Tasha’s accident, Maria had the unique opportunity to meet the man who received her daughter’s heart. Maria recalls the time his wife called with the news that
7
World’s Biggest Walkthey were expecting a baby and wanted to name her Tasha. Th ey didn’t know that it was Tasha’s birthday that day. Now years later, Maria reports, “(Tasha’s) heart is loving and caring for six children. What a phenomenal, phenomenal gift.”
Another 35 supporters in Saskatoon, SK, walked to show their solidarity with those on transplant waiting lists. At any given time there are about 150 people on the list in Saskatchewan and an estimated 40% of them will die before an organ becomes available. “Th ere are never enough donors
for the amount of people waiting. I think it’s something we have to promote all the time,” said Raylene Matlock, Saskatchewan Transplant Manager. Filling out a donor card or putting a sticker on your driver’s license or health card is a good fi rst step, says Matlock, but for those wishing to donate, it’s essential to discuss it with friends and family. Most of the people taking part in the walk were either recipients themselves or still waiting for a transplant. “Th ey are ‘walking proof ’ that there is life after a transplant and hope for
those still waiting,” said CTA spokesperson Orest Saskiw, local heart recipient. Another walker, Sherry Duncan Paterson, is one of the longest living survivors of a heart-double lung transplant (now 18 years post-op). “It was devastating at the time,” Sherry recalls, “but every day is a gift now. I’m just so grateful to have the opportunity at a second chance. Th e best part is that my two daughters are grown up and I got to be their mom.”
– Submitted by Jennifer Holman
Pictures and stories submitted by:Margaret Benson, VancouverLisa Gress & Shauna Rivait, CalgaryKathy Tachynski, EdmontonMaria Stranaghan, Peace RiverKristin Feddema, Mile Zero News, Peace RiverErin Steele, Peace River Record-GazetteOrest Saskiw, SaskatoonRory Maclean of ‘Th e Star Phoenix’, Saskatoon
8
Exercise Exceeds ExpectationsI recently had the pleasure of interviewing Jennie Diment, kidney transplant recipient and long-time active member of the Canadian Transplant Association. At 79 years of age, Jennie feels she has a lot to be thankful for despite living with diabetes, a kidney transplant and a recently implanted pacemaker. Jennie shares her story with Th e Living Proof to motivate others on the importance of an active, healthy lifestyle following transplantation.
For nearly 40 years, Jennie has managed her diabetes with four-times-daily insulin injections and careful attention to her diet. She credits regular checkups, a positive attitude, and a good sense of humour for maintaining her overall health.
Although Jennie’s diabetes and kidney function were well-maintained, she began to develop heart problems in 2004 and eventually required open heart surgery. Jennie recovered by watching her diet and controlling her weight and blood sugar levels. However, she struggled with fl uid collections on her lungs and, during the fi rst six months of the year, spent 74 days in hospital (over a month on one visit!). At one point, Jennie’s tiny frame reached 147 pounds - heavier than her husband, Garry.
Jennie’s physicians worked hard to control the fl uid retention and adjusted her medications often. As Jennie says, “It’s bad enough for doctors to have
to look after one health issue, but when you have kidney issues, diabetes AND heart problems, often times one medication works for one organ, but not for the other.” After continued tests and investigations, Jennie had a pacemaker surgically implanted in July 2010. She is truly grateful for all the healthcare professionals who looked after her at Edmonton’s Mazankowski Alberta Heart Institute and at the START (Short Term Assessment, Rehabilitation and Treatment) program (for seniors) at the Glenrose Hospital.
Twice a week, Jennie attended exercise classes from 9:30 am-2:30 pm. She noticed that, with regular activity and watching her diet, she slowly lost weight and her daily blood sugar levels were lower. In fact the START doctor recommended she try an experiment for two weeks - take insulin only at night and test her blood sugar each morning. Jennie found her levels were steady - on average about 6.0 mmol/L. Th e combination of regular exercise and a balanced diet has given Jennie improved energy and balance, a return to her steady weight of 113 pounds and reduced insulin injections from four times a day to only once, truly exceeding her expectations!
Jennie and Garry, her husband of 60 years, now live in an assisted-living residence and Jennie faithfully adheres to her exercise program. Each morning begins with a 30-minute session downstairs with fellow residents and continues in her suite with weights for upper body and leg strengthening. Her day ends with a walk every evening – she uses her walker “to pick up speed to get my heart pumping even harder”. When the weather keeps her from walking outdoors, Jennie walks the corridors. Her neighbours carefully look both directions before leaving their suites to check if she’s coming down the hallway! Regular exercise and reduced insulin injections have bumped up her energy levels. In fact, she proudly boasts that she can now out distance Garry. Jennie says that processed foods played a role in her problems with fl uid retention so now she
maintains a salt-free diet. She feels blessed and lucky to have the health she has today adding, “Here I am at 79 and I feel better than I did at 65!”.
Jennie has participated in World Transplant Games in Vancouver, Manchester, and Japan but is perhaps proudest of the gold medal she won in bowling at the Canadian Games in Edmonton (2006) where, at 75 years old, she was the oldest participant. What she enjoys most about the games is the camaraderie of “knowing so many others that are like you. We are a collection of grateful people.” Jennie adds, “One thing I will always be proud of is adding the nine important words to the end of the Athlete’s Oath, ‘and in grateful tribute to donors and donor families.’” Th is simple but eloquent phrase is now a permanent part of the Oath that opens the Canadian Transplant Games.
As we concluded the interview, Jennie added her gratitude for the support of a loving husband. I asked Jenny the secret of their 60-year marriage and she replied, “Be grateful you’ve selected a mate who is someone outstanding with a great sense of humour (or sense of the ridiculous). When you argue about trivial things, in the end you realize it’s not worth it so laugh about it.” Jennie has actively volunteered for the CTA and other community organizations for over 20 years and everyone knows it’s a two-person team with Garry always there for support.
Jennie, thank you for sharing your helpful tips on managing good health after transplant, living with diabetes and maintaining a long, happy marriage. All your friends in CTA wish you and Garry a happy belated 60th wedding anniversary and many more years of health and happiness.
– Submitted by Kathy Tachynski
For nearly 40 years, Jennie has managed
Assessment, Rehabilitation and Treatment)
weight of 113 pounds and reduced insulin
9
Kidney March: 100 KM ... 3 Days What do you get when you combine a transplant nephrologist, a renal transplant coordinator, the secretary of the Canadian Transplant Association and a kidney transplant recipient? ... the Edmonton “Transplant Trekkers”.
Th is small but determined team (Dr. Sandra Cockfi eld, Christine Wickens, Kathy Tachynski, and Gabrielle Suttis) walked 100 KM over three days from September 10–12, 2010, in the fi rst-ever Kidney March, organized by the Calgary Branch of the Kidney Foundation of Canada. Th e goal of the Kidney March was to bring individuals from diff erent walks of life together in a united front against kidney disease. Funds raised from this event go towards kidney health programs and medical research.
Th e March began on a very chilly, damp morning at a racetrack near Millarville, AB, where 219 walkers gathered to hear inspiring words and to warm up before heading out on an unforgettable journey. Th e walk proceeded through Kananaskis country, north along the Rocky Mountains foothills all the way to Calgary. Over the three days, we had warm sunshine and blue skies, strong gusty winds, rain, and even hail that came down so hard we had
to take shelter under a tree. At the end of each day we lived in “Kidney City,” our home away from home for two nights, complete with porta-potties, meal and entertainment tents, outdoor sinks, and trailer showers (ooh ... that felt GOOD!).
Day three was by far the coldest, but the fi re in our hearts for the cause, the glory of nature around us and the encouraging smiles of the volunteers and fellow marchers helped us get through the day and reach the fi nish line at the top of Canada Olympic Park, a premier venue of the 1988 Olympics.
I feel fortunate to have endured dialysis treatment and then be blessed with a kidney transplant over 19 years ago, allowing me the opportunity to complete this walk. I met a dialysis patient who participated in the walk whose daughter is being assessed to donate her kidney to him. I met a lady with no connection to kidney disease who did the walk to lose weight. She lost 55 lbs. training for the walk and said she’s going to be 40 lbs. lighter for next year’s walk. I met a young man whose kidneys are failing and worries about a future living with kidney disease. I met a family actively involved in promoting organ donation awareness since
the son donated an organ to his father. And I met two sisters who walked in memory of their 39 year old brother who died 18 months ago from complications of kidney failure. Th eir friendship, their stories and so many more inspired me every step along the way to the fi nish.
At the fi nish line, we were given new red shirts for the fi nal walk to the bottom of the park – a sea of red, followed by the grey shirts of the volunteers, descended to enormous applause. Emotions were high as our new extended “Kidney March” family reunited with family and friends. It was an unforgettable end to a life-changing experience and one that I will cherish forever. Look out Kidney March 2011; here we come!
For more information on the Kidney March please visit www.kidneymarch.ca and look for more photos posted on the WTGF website.
– Submitted by Kathy Tachynski, kidney recipient
Edmonton Transplant Trekkers (left to right): Chrissie Wickens, Dr. Sandra Cockfi eld, Kathy Tachynski, Gabrielle Suttis
Left: approaching the warm welcome of family, friends, and others at the bottom of Canada Olympic Park for Closing Ceremonies.
2011; here we come!
March please visit
WTGF website.
10
I Finally Get It
57 Successful Kidney Transplants in Canada Thanks to LDPE Registry
The Canadian Transplant Games in Quebec City this August was my third foray into the world of support person (manservant) to Sheryl Mamchur and the rest of Team Saskatchewan. What a wonderful venue for celebrating the gift of life that organ donation brings!
When I first met Sheryl in 2004, I understood that it was important to have my donor card signed and proclaim that I would donate my organs. At the time, Sheryl was a liver transplant recipient of four years, and it wasn’t long before I realized not only the important gift this person had received, but the gift that she is. Her outlook on life and her lack of concern for life’s little stresses seemed to suddenly make my life run more smoothly ... I thought I was getting it.
In 2005, Sheryl met the Bourassa family and learned about the World Transplant Games. Determined to participate, Sheryl made phone calls, wrote letters and called
in favours to raise the money to go to London, Ontario. I stayed behind but she called me every day with stories about the people she’d met, the donor families, the children ... again I thought I got it.
In 2006 the Canadian Transplant Games were held in Edmonton, AB, and I tagged along, oblivious to what I was about to witness. On a cool, rainy day at Edmonton’s city hall, the parade of athletes entered the hall to cordial, polite cheers but there was a buzz in the air as the recipients took their seats. I was unprepared as the donor families entered the room – loud, sustained cheers erupted from the crowd as recipients, families and guests all rose to their feet. The hair on the back of my neck leapt to attention and tears welled in my eyes as I watched these total strangers who had given such an incredible gift to people they knew nothing about. The emotion caught me off guard ... was I finally getting it?
Later, at the swimming competition, small children were racing the 4x50m relay. I watched a young fellow, too tired to finish the race, grab the lane marker and pull himself to the end of the pool rather than stop. I was awestruck ... quitting was not an option for this boy. Later, at the Closing Gala, that 7 year-old boy performed an unforgettable gesture by presenting his medals to donor families. Tears welled again ... suddenly I GOT IT!
Six years later, in Quebec City, I got a chance to catch up with this young man and many more new friends. Thank you organizers, hosts, participants and, especially, donor families for sharing a gift that can only be measured by those who live with it every day. It is in the spirit of those who have received the gift, nurtured it and given it wings. Thank you all ... I think I finally get it.
– Submitted by Ted Ludyk, “Manservant”
While dialysis treatment has saved countless lives worldwide, it does so at a price, both economically and in terms of quality of life. Many patients are unable to work and can spend upwards of 40 hours a week undergoing treatment.
There is no doubt that, for people with end-stage kidney disease, a transplant is the most effective treatment option. However, with the rates of kidney disease increasing and the demand for transplants growing, patients are waiting up to a decade to get the organ they need. That’s why, when the Federal, Provincial and Territorial governments mandated Canadian Blood Services to design a system to improve organ and
tissue donation and transplantation in Canada, they included the development of a registry that would help facilitate more kidney transplants.
In January 2009, the Living Donor Paired Exchange (LDPE) registry was launched as a pilot project in British Columbia, Alberta and Ontario. The LDPE facilitates transplants between those with a willing but incompatible living donor, and other pairs in the same situation. These “unmatched pairs” are entered into the registry and a complex computer algorithm locates matches within those pairs.
The first surgeries took place in June 2009, and since then 185 donor-recipient
pairs and 21 non-directed donors (people willing to give a kidney to anyone in need) have registered and 57 transplants have taken place. Those are 57 people that no longer require dialysis; saving millions of healthcare dollars annually.
Every province is now participating, and the most recent match run in November was the first to include pairs from every province making the LDPE the first Canada-wide organ donation registry.
For more information on the Living Donor Paired Exchange, please visit www.organsandtissues.ca.
– Submitted by Chris Brennan with Canadian Blood Services
11
17 Kidney Transplant Athletes Receive the 2010 Founder’s Award
CTA’s Own Linda Rowe Receives Volunteer Award
MONTREAL, Nov. 26 /CNW Telbec/ Th e Kidney Foundation of Canada’s 20th annual Founder’s Award Gala was a tremendous success, this Wednesday, November 24, when 17 kidney transplant
athletes who participated in the 2010 Canadian Transplant Games received the Founder’s Award. More than $800,000 was raised in the 2010 Founder’s Award
Campaign. During the twenty years of the Campaign over fourteen million dollars were raised.
“Organ donation is the ultimate in generosity - it is the gift of life. We thought it was important as part of our 20th annual Gala to honour 17 remarkable people who are living proof of what the gift of life can truly accomplish,” said Mr. Loff reda, Honorary President of the Founder’s Award Campaign. “Th is year’s Gala shows that life really can be prolonged through organ donation. Every year, hundreds of Quebecers watch their health deteriorate due to kidney disease, because they don’t have the opportunity to receive a transplant. Th ey require medical care to stay alive. Initiatives like the Gala are essential, because they support research that will one day help fi nd the cure for people living with kidney disease,” said Mr. D’Ignazio, Chairman of the Founder’s Award Campaign.
As proud contributors to the measures recently announced by the Hon. Yves Bolduc, Quebec Minister of Health and Social Services regarding the legislative
bill to promote organ donation, the Foundation made the most of its 20th annual Gala to honour these 17 kidney transplant athletes and celebrate the new bill.
About the Founder’s Award Gala:Launched in 1991, the Founder’s Award Campaign is one of the largest fundraisers for the Quebec Branch of Th e Kidney Foundation of Canada. Funds raised this year will help the Foundation fi nance the fi ght against kidney disease.
About The Kidney Foundation of Canada:Th e Kidney Foundation of Canada was founded in 1964 as a national volunteer organization committed to reducing the burden of kidney disease. Since its establishment, the Foundation has funded and stimulated innovative research into kidney disease; educational and support programs; promoted access to high quality healthcare and increased public awareness and commitment to advancing kidney health and organ donation
Huntsville, Ontario, honoured CTA founding member, Linda Rowe, at their annual Community Recognition Awards ceremony earlier this year. Of the 71 nominees, Linda was selected for the Jan Glenn Award as Top Volunteer of the Year for her ongoing volunteer work with the Canadian Transplant Association, Trillium Gift of Life Network, Kidney Foundation of Canada, Huntsville Animal Shelter and the Ravenscliff e Church. Rowe
said, “I was so shocked that I beat out all the other nominees because everyone was very deserving of this award. I was truly honoured to receive it.” Rowe also celebrated a transplant milestone last year. Valentine’s Day marked the 25th anniversary of Rowe’s third kidney transplant. Congratulations, Linda! CTA continues to benefi t from your years of experience, your time, and your energy. Th ank you.
Photo (not in order): Carmen Boudreau, Laureen Bureau, Gordon Denison, Jonathan Emond, Sarah Ferron, Elizabeth Ingram, Riitta Kaarre, Sébastien Larochelle, Patrick Maillet, Lloyd Mangahas, Jean-Christophe Nicolas, Nadine Ogonowski, Lucille Plamondon Dufour, Lise Plamondon Guay, Guy Peterson, Pierre Rancourt, Rosa Shields
12
Pet Care Safety TipsDid You Know?People who have received organ transplants are more likely than most people to get diseases from animals? Most households in Canada have at least one pet?
Why do people have pets? Well, there are a lot of reasons including:
Pets can decrease your:• Blood pressure • Cholesterol level • Triglyceride level • Feelings of loneliness
Pets can increase your:• Opportunity for exercise • Participation in outdoor activities • Opportunity for socialization
Some people are more likely than others to get diseases from animals. Anti-rejection drugs, age and overall health all affect your immune system increasing your risk. However, you may not need to give up most household pets. Certain precautions are recommended for transplant recipients to decrease the risk of transmission of infectious diseases.
Choosing A New Pet When buying a pet, avoid animals that are ill, stray or very young (cats and dogs less than 6 months old). These animals are more likely to carry diseases that can make you sick. The following animals are considered high-risk for immunocompromised people including transplant recipients.
• Reptiles including lizards, snakes, and turtles
• Baby chicks and ducklings • Exotic pets including monkeys• Wild animals - no one should adopt
wild animals as pets or bring them into the home.
If you do come in contact with one of these animals or their environment (e.g. their food or cage), wash your hands
thoroughly. Additionally, transplant recipients should be extra cautious when visiting farms, petting zoos or fairs.
Hand SanitationWash your hands thoroughly with running water and soap after handling animals or their feces (stool). If possible, you should avoid any contact with animal feces. Adults should supervise the hand-washing of children.
Caring for Your Pet If your pet is ill, seek veterinary care as soon as possible. Any cat or dog that has diarrhea should be checked by a veterinarian for infection with Cryptosporidium, Giardia, Salmonella and Campylobacter.
Birds: Bird cage linings should be cleaned daily. Wear gloves whenever handling items contaminated with bird droppings. Routine screening of healthy birds for zoonoses (diseases that can be passed from pets to humans) is not necessary.
Fish: Avoid cleaning fish tanks by yourself. Ask a family member or friend for assistance. If this task cannot be avoided, you should wear disposable gloves during such activities. Wash your hands thoroughly with running water and soap afterwards.
Cats: If you have a cat, try to have another person clean out the litter box on a regular (daily) basis. Do not place litter boxes in kitchens, dining rooms, or other areas where food is prepared and eaten. Keep your cat indoors and avoid handling stray cats.
Feeding Your Pet Just like people, pets can get diseases from eating contaminated food. By protecting your pet from food-borne diseases, you can protect your own health as well. Pets should be fed only high-quality commercial pet foods. If eggs, poultry or meat products are given to your pet as supplements, they should be well-cooked. All dairy products should be pasteurized. Additionally, pets should not be allowed to drink toilet bowl water or have access to garbage. Do not let your pet scavenge for food or hunt.
– Excerpts from Centers for Disease Control resource: “Guidelines for
preventing opportunistic infections among hematopoietic stem cell transplant recipients” and “Morbidity and Mortality
Weekly Report”, October 20, 2000; 49(RR10):1-128.
13
CANADIAN TRANSPLANT GAMES QUEBEC 2010
“A picture is worth a thousand words”.“For me, that day was the highlight of the games. Th e donor families were so honoured and we got to spend the majority of the day with them. Th ere was the walk, medal ceremonies, lunch and a huge cake honouring them and the loved ones they lost. Th e families were so appreciative of the day and amazed at the athleticism of the athletes, but even more amazed and overwhelmed at our respect, appreciation and love for our donors and donor families. It was truly a very special day. Many of the families spoke very little English, but even the language barrier was broken down, by smiles, hugs and lots of tears.”
– Margaret Benson, CTA Vice-President West
Months after the Canadian Transplant Games held in Quebec City, we are still receiving positive comments from athletes and donor families. Th ese pictures are a fl ashback of this memorable day.
– Catherine LachanceCommunications Technician Québec-Transplant
JEUX CANADIENS DES GREFFÉS QUÉBEC 2010“Des images qui valent mille mots”.Plusieurs mois après les Jeux canadiens des greff és, nous continuons de recevoir des commentaires de greff és et de familles de donneurs au sujet de la journée des familles de donneurs du 11 août dernier. C’est pourquoi nous faisons ici un petit clin d’œil à ces moments mémorables.
Donor families, recipients and family members at the starting line of the 3 km Women’s Race Walk.
Les familles de donneurs et les accompagnateurs encourageant les athlètes à l’ épreuve de marche du 3 km femmes.
A cake “Celebrating Life” off ered by Quebec-Transplant and Héma-Québec to donor families. Dr Francine Décary, President and Chief Executive Offi cer, Héma-Québec and Mr Louis Beaulieu, Executive Director, Québec.
Le gâteau « Célébrons la vie » a été servi par Québec-Transplant et Héma-Québec afi n de clôturer le repas-partage de cette journée. On reconnait ici Dre Francine Décary, présidente et chef de direction, Héma-Québec et M. Louis Beaulieu, directeur général, Québec-Transplant.
14
Thank you for supporting the Canadian Transplant Association
Did you know that the CTA is on Facebook!If you are a Facebook member, CLICK HERE and LIKE us to follow our group!