the living proof - canadian transplant · jean gravel to 8th world winter transplant games ... do...
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The Living ProofCanadian Transplant Association www.organ-donation-works.org
Issue #36 Spring 2012
Celebrating 25 years of promoting organ donation awareness in Canada
President – David [email protected]
Vice-President – West – Jennifer Holman [email protected]
Vice-President – East – Aubrey [email protected]
Treasurer – Janice [email protected]
Secretary – Kathy [email protected]
Membership Director – Neil [email protected]
Team Manager – Tara Brady [email protected]
REGioNAL DiREcToRS
Bc – Margaret [email protected]
AB – Jennifer [email protected]
SK – orest [email protected]
oN – Sandra [email protected]
Qc – Gaston [email protected]
NB – Mark [email protected]
NS – Trevor [email protected]
Inside This Issue ...President’s Corner ...................................................................................... 3
Edmonton Performs 5,000th Transplant ........................................ 4
In Memorium - CTA Saskatchewan Mourns Double Loss ......... 4
Frequently Asked Questions About Organ and Tissue Donation ................................................................................. 5
Changes ......................................................................................................... 5
Operation Popcorn: A Way to Say Thank You ............................... 6
Sandra Holdsworth ................................................................................... 6
Ryley’s Story ................................................................................................ 7
Jean Gravel to 8th World Winter Transplant Games ................... 8
World Winter Transplant Games 2012 ............................................... 9
Youth Awards Debut in 2012 ............................................................... 10
Love Your Kidney ...................................................................................... 10
World’s Longest Banner - A Canadian Initiative .......................... 11
National Organ and Tissue Donation Awareness Month - April 2012 ............................................................ 12
Youngest Alberta Heart-Lung Recipient ........................................ 13
The Power of Two - Documentary Film .......................................... 14
Outdoor Enthusiast Thankful for Gift of Life ................................ 15
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
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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 May 31, 2012. 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.
President’s Corner David Smith, Kidney Recipient, Edmonton, AB
Hello everyone,
I hope you are all ready to put winter behind you and start getting outside to run, bike, ride, hike, stroll and other fun activities to enjoy the fresh air and freedom of the great outdoors.
With the 6th Canadian Transplant Games in Calgary only a few months away, there is no better time to dust off those golf clubs, re-string the rackets and pick out a nice swimsuit to wear in the pool along with all the other transplant recipients, as they are getting ready to participate in all the various sports we have to offer.
The transplant games are more than just a combination of Olympic-style sporting events spread out over a week. It is a place where recipients will meet and share unique stories about their journey through diagnosis to transplantation; it’s an environment to celebrate the success of Organ Donation in Canada and throughout the world and it’s a time to remember and honor the many donors and donor family members whose selfless act to donate made living a normal life again possible for you and me.
If something is holding you back from attending the games, like the level of competition in the various sports being offered or the nervous feeling of venturing into an unfamiliar setting for the first time, you should put those fears behind you. You have already cleared one of the biggest hurdles in life while you were waiting for and then eventually receiving a transplant. Always think of that when it comes time to make a decision in your life to try something out of your comfort zone. You have already beaten the odds, and it’s now time to start living again while letting nothing hold you back.
Make the 6th Canadian Transplant Games in Calgary - July 16th to the 22nd the first step into venturing out to make the most of what life has to offer. I anxiously await the next games, to reunite with the regular participants and welcome all of the fresh new faces at the games.
Check our website for Registration information, or call the Toll Free line at 1-877-779-5991 for more information.
All the best, Dave
On THE COvER
CTA celebrates 25 years of promoting
organ donation in Canada.
CTA is pleased to recognize Air Canada as an official
airline for the Canadian Transplant Games in Calgary July 16-22, 2012. Your ticket is eligible for a discounted rate provided you book your flight to Calgary (YYC) on aircanada.com and enter the correct Promotion Code in the search panel at the time of purchase. The travel period begins Monday, July 09, 2012 and ends Sunday, July 29, 2012. The promotion code is: 4FRVFXY1
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Edmonton Performs 5,000th Transplant
In MEMORIUM – CTA Saskatchewan Mourns Double Loss
Changes
After more than four decades of transplantation, the Transplant Services program at the University of Alberta Hospital in Edmonton recently surpassed its 5,000th transplant including:
2405 kidney•
1228 liver•
730 heart•
509 lung•
347 islet•
102 pancreas and •
14 small intestine/multivisceral •transplants
Located at the University of Alberta Hospital, Stollery Children’s Hospital and Mazankowski Alberta Heart Institute, the program is the primary centre for solid
organ transplantation in Western Canada and the only site in Canada performing all forms of adult and pediatric solid organ transplantation including cadaveric and living donor procedures for kidney, liver, heart, lung, pancreas, islet, and small bowel. The program performs between 250 and 300 transplants annually.
Partnerships with the University continue to advance our understanding of the complex field of transplantation in the areas of organ and tissue preservation and repair, surgical techniques and immunosuppression. Members of CTA Alberta had an opportunity recently to meet with Dr. Atul Humar and Senior Development Officers of the newly created Alberta Institute for Transplant Sciences (AITS). AITS facilitates and promotes
partnerships between clinical practice, research and education with the goal to improve the lives of patients with organ failure. At our meeting, CTA and AITS discussed the growing divide between the number of Canadians on transplant waiting lists and the available organs. We share a common mission to develop comprehensive education and awareness campaigns to support organ donation internally within hospital intensive care units and emergency departments and externally with the public and government agencies. We look forward to establishing a mutually productive partnership with AITS to further our goal of removing barriers to transplantation.
Submitted by Kathy Tachynski and Jennifer Holman
Within the last six weeks, CTA has lost two of our members and their friends in Saskatchewan and across the country mourn their passing. Both Norm and Lorne attended Canadian Transplant Games (CTG), Norm in Windsor in 2008 and Lorne in Quebec City in 2010 making many friends as they went.
Norm Paproski was born in Humboldt, Saskatchewan in 1946. He moved to the big city to attend the University of Saskatchewan in the Faculty of Education
where he met and married Marlene, who was also studying to be a teacher. They taught together in a number of small communities around the province and Norm was always an active volunteer.
He coached golf, hockey and football but especially enjoyed time spent on the links with his golf buddies. In May, 2006 Norm was called to Edmonton for a double lung transplant. While recovering from his surgery, he and Marlene volunteered with pre-game activities for the 2006 CTG in Edmonton. Then, in 2008, Norm got the chance to compete in Windsor and won a silver medal in golf. Norm passed away January 13, 2012 surrounded by his family – Marlene, his wife of 43 years, two sons, their wives and seven grandchildren.
Lorne Ashby was also a native of Saskatchewan, born in Duck Lake in 1946. Lorne worked at the Prince Albert Pulp & Paper Company until his retirement when the company
closed its doors. Like Norm, Lorne was also an avid volunteer with a variety of organizations in his community and he enjoyed coaching hockey and softball. But Lorne found his greatest pleasure at the lake cottage fishing all afternoon from his boat and telling fish stories all evening about the ones that got away. Lorne received a double lung transplant in May 2007. In 2010, Lorne attended the Canadian Transplant Games in Quebec City with his wife, Sharon, and brought home a silver medal in long jump and a bronze in shot put. He passed away February 1, 2012.
Our thoughts and prayers go out to Marlene, Sharon and all their friends and families. Norm and Lorne will be missed by us all.
Submitted by Orest Saskiw
Frequently Asked Questions About Organ and Tissue DonationWho can donate organs
and tissues? The criteria for organ and tissue donation continue to change. Age is no longer the limiting factor it once was. However, the organs and tissues have to be healthy and the donor must be free from diseases such as cancer that could potentially be harmful to the recipient. Nearly everyone can become a tissue donor when they die.
What organs and tissues
can be donated?Organs: heart, lungs, liver, kidneys, whole pancreas, pancreas islets, intestine.
Tissues: corneas, sclera, skin, heart valves, bone and, tendons, amniotic tissue.
Can I donate organs while I
am alive (living donation)?Yes. Kidneys, part of the liver and part of the lung can be donated. Talk to your family doctor, who will then refer you to a specialist, or call the Living Donor Program for more information.
What are the religious issues around organ/ tissue donation?
While most religious groups do not discourage their members with regard to organ donation, organ donation is a very individual and personal matter. If you are at all concerned, you should discuss the issue with your own religious leader.
If I have signed a donor card, will the quality of my medical care be compromised?No, absolutely not. All medical interventions will be exhausted and every effort will be made to save your life before donation is even considered.
Will my body be disfigured by the removal of organs/tissues?No, donation does not disfigure the body. The surgery to remove organs and tissues is done with the same care as any other surgery and the body is treated with
respect and dignity. Organ donation does not prevent an open casket service or delay the funeral.
How are organs distributed?Patients requiring transplants are matched to an available organ based on a number of factors: blood group, height, weight, medical urgency, length of time on the waiting list, and geographical location. Medical specialists in the transplantation field choose recipients to “best match” the available organ.
If I sign a donor card indicating my desire to donate, will my wishes be carried out?Not necessarily. A signed donor card is only a record of your wish to donate. It is very important that your family know of your desire to donate. Family members will feel better about dealing with the issue of donation if they know your wishes in advance. Doctors are hesitant to proceed with organ donation if family members have objections.
2012 has seen a number of changes to the Canadian Transplant Association Board of Directors.
Rob Kolatschek has stepped down from his position as Provincial Director for Ontario and sends greetings to his CTA friends. “This past year has seen the birth of our little baby girl Norah. I want to spend as much time as I can with Norah, her big brother, Mateo, and my wife, Mae when I’m not busy at work...a key reason I feel that I don’t have the necessary time or energy that the role of Director deserves. I’ll still be actively involved with CTA Ontario but just at a different
level. Unfortunately, I will also not be making it out to Calgary this summer for the Canadian Transplant Games. I have accepted an opportunity to volunteer at the Olympic Games in London, England this summer which is a once in a lifetime opportunity that I just couldn’t pass up. I’ll be thinking of you all and eager to join in other future Games. I will continue to look up to you all as inspiration and look forward to contributing to the transplant cause more actively again in the near future. We also look forward to seeing you all again soon. Please keep in touch.” [email protected] 905-597-2496.
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Operation Popcorn: A Way to Say Thank You
In December 2011 transplant recipients from across the province of British Columbia visited local hospitals delivering large decorative tins of popcorn. Why? To say “Thank You” to hospital staff for the integral role they play in the transplant journey and to honour the memory of the
donor who gave them the Gift of Life.
BC Transplant has hosted Operation Popcorn for more than 20 years attracting more volunteers (mostly transplant recipients) every year. It’s an important delivery for the recipients as well as the hospital staff who look forward to the visit. Physicians and staff are encouraged by the amazing stories of survival and can see the success of organ donation and transplantation. It gives them a chance to realize that their work, while at times very sad, is truly saving lives.
Lion’s Gate Hospital in North Vancouver, hosted a large group of grateful recipients and we were greeted by Dr. Shannon Chestnut as very special guests. Two young teenagers, Jack Palmer and Simon Eusebio, both heart recipients, joined
our group this year and their amazing stories brought forth many ooohhhh’s and aaahhhh’s from the hospital staff. One of the recipients was able to personally thank her ICU nurse who was with her the day she received the news of her life saving organ. Many tears were shed by both.
Thank you to BC Transplant for giving us the opportunity to show our gratitude to the many doctors, nurses, laboratory specialists and other hospital staff who perform a difficult but crucial role in the organ donation process. We know that without their support, organ donation and transplantation would not be possible.
– Submitted by Margaret Benson
Sandra HoldsworthSandra Holdsworth, newly appointed CTA Provincial Director, Ontario had lots to celebrate in her hometown of Aurora last month. On Sunday, February 26th, Sandra’s friends and family gathered at the Aurora Soccer Club to celebrate the 15th anniversary of her life-saving liver transplant. Janine Thompson of ‘Hooked on Fondant’ prepared the cake for a dinner the night before to honour the Gift of Life. Janine’s father, Vaughn Barclay, was an organ donor in 2009. Left to right: Nancy Doige & Dale Doige (son Ryan was an organ donor in 1997); Melody
Klassen, (kidney recipient); Ruth McKillip (Donor Coordinator, M.O.R.E. Program); Arlene Lindsay (liver recipient); Jennifer Irwin (kidney/pancreas recipient), Sandra Holdsworth (liver recipient); Alyshia Higgins (father Malcolm was an organ donor in 2010); Heather & Terry Talbot (son Jonathon was an organ donor in 2009); Todd Lawrence (kidney/pancreas recipient)
Ryley’s Story
Our daughter Ryley was born in June 2005 and, other than deciding to join us a few weeks early, she appeared to be a healthy baby girl. We took Ryley to all her doctor’s visits and had the health nurse to our home and no one saw any indications that anything was wrong. But when Ryley was two months old, she started to vomit and was making a little sighing noise when she was breathing. We thought she just had a ‘bug’ but after a couple of days, we decided to have a doctor look at her. It was the evening and the walk-in clinic was full for the night. So we decided to drive to the local emergency room. If it was busy we would wait to see the doctor the next morning. The ER was empty that night and I think that may have saved Ryley’s life.
The doctor examined her, did a chest x-ray and then told us they were going to transfer us to the children’s
hospital in London to do more tests. When we arrived in London, our tiny little baby was swarmed by doctors and nurses trying to examine her and get blood. Through all the commotion, I remember seeing one doctor standing in the background holding up the chest x-ray and saying “enlarged heart”. I didn’t really know what that meant, but I knew it sounded bad. A cardiologist ordered an echocardiogram on Ryley and, within an hour of arriving, we had the diagnosis of Dilated Cardiomyopathy. When the heart becomes enlarged, it cannot effectively pump blood to the rest of your body and your other organs start to fill with fluid and shut down. With the severity of Ryley’s enlargement, it seemed a miracle she was still alive. I remember asking the doctor if this meant she was going to die. He said, “No, but she would likely be a candidate for a heart transplant”. I only remember bits and pieces of those first few days….like my daughter’s first haircut being a shaved spot on her scalp for an IV site…or the pain I felt watching her fly away by helicopter on her way to Sick Kids in Toronto for the transplant assessment. I didn’t know if she would still be alive by the time we drove there.
The next few months were a whirlwind of appointments and prayers hoping the cardiac medications might give her heart a chance to heal. But when she was 7 months old, we could see she was getting worse and we were given the choice of palliative care (making her comfortable until she passed) or listing her for transplant. The choice was clear. Miraculously, only ten days after she was listed, Ryley received her gift
of life. Eleven days after that, she was discharged from the hospital and hasn’t looked back since.
This past January we celebrated Ryley’s 6th “Heart Day”. We will never be able to put into words how thankful we are to the donor family for giving our daughter life. Ryley is living life to the fullest and having more experiences than most people have living into old age. In 2010 she participated in the Canadian Transplant Games in Quebec as the youngest participant that year and won 4 gold medals in her events. In 2011 she was part of the launch of the new on-line organ donor registry in Ontario http://beadonor.ca where we filmed a testimonial video for the site. Ryley got her “Wish” trip to Disneyland this past fall where she enjoyed a magical week as a princess. And now we are preparing for the Games this summer in Calgary.
I recently became a Parent Liaison for children under twelve for the Canadian Transplant Association in Ontario and, as a family, we love to attend and support our local CTA events. I hope, by sharing Ryley’s story, we can not only inspire more people to become organ donors, but also help other families going through this see that there is a light at the end of the tunnel. Despite everything these children have to go through, life for them can be so very, very good!
– Submitted by Joanna Mitchell
In addition to her role with CTA, Joanne is also Chair of The
Oxford County Life Donation Awareness Association (LDAA)
www.lifedonationawareness.com
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Jean Gravel to 8th World Winter Transplant Games
Greffé cardiaque en octobre 2002 à l’Institut de Cardiologie de Montréal, après qu’un virus se soit logé dans son coeur, ce père de 3 enfants participe maintenant à de grandes rencontres sportives pour les greffés.
À l’été 2010, il prend part aux Jeux canadiens des greffés et remporte la médaille d’or à l’épreuve du 20 Km en cyclisme.
Encouragé par cette réussite, Jean Gravel participe à trois épreuves aux 8e Jeux mondiaux d’hiver des transplantés, qui se tiennent du 4 au 9 mars 2012, à Anzère, en Suisse.
Suivez Jean dans ses compétitions: 1- Ski de fond 3 Km - lundi 5 mars 2012 2- Slalom géant - mardi 6 mars 2012 3- Biathlon - mardi 6 mars 2012
Le village de Anzère est perché dans les Alpes à 1500 mètres d’altitude; c’est un village de ski typiquement Suisse avec des gens sympathiques et accueillants. Le point de vue est féérique.
Les jeux ont été officiellement inaugurés hier soir, avec fanfare et feux d’artifice. Nous avons même eu droit à un hymne des jeux joué à la trompette suisse. L’organisation est, comme ils le disent ici, « nickel »; tout est bien organisé.
Il y a 300 participants provenant de 27 différents pays des 5 continents.
Les 4 membres de l’équipe canadienne ont tous participé à des compétitions aujourd’hui et nous avons mérité une médaille d’or en Slalom Géant en planche à neige avec Maude Schneider de St-Sauveur, jeune greffée des reins de 29 ans.
Somme toute une journée plus que satisfaisante et encourageante. De voir un homme de 82 ans descendre en GS et un de 70 ans en ski de fond, tous greffés, ça donne de l’espoir.
Passez le mot : LA GREFFE D’ORGANES, ÇA FONCTIONNE!! Et plein de gens sont ici pour le prouver, et fiers de le faire.
Je reviens sans médaille mais très heureux et fier d’avoir accompli ces défis avec succès. Je rends hommage aux artisans
de ce succès, les employés de l’institut de cardiologie de Montréal, les infirmières de l’équipe de greffe, mes cardiologues qui m’offrent leurs avis judicieux et le personnel de la fondation qui se dévoue à faire avancer la recherche. J’en oublie, mais que tous ceux qui contribuent de près ou de loin au bien-être des gens dans ma condition soient remerciés et soient fiers de ce qu’ils font.
Je dois aussi mentionner l’essentiel : le support de ma conjointe Sonia et de mes trois filles qui non seulement ont été des supporters dynamiques pendant les jeux mais ont aussi toujours été présentes pour m’encourager dans les différentes épreuves qui se sont mises sur notre chemin. Je dois
World Winter Transplant Games 2012
Since its creation in 1978, the World Transplant Games Federation has worked to increase public awareness of the need for organ donation and to promote the success of organ transplantation. Their major vehicle to promote this awareness is through both Summer and Winter World Transplant Games which take place every two years at various locations around the the world.
Although the Winter Games are a smaller event than the Summer Games, they are by no means any less exciting or memorable. Smaller numbers of people sometimes means that you have a greater opportunity to meet everyone attending the Games. And despite their size, the Winter Games have a significant impact in the message they send to the world that “Transplant Works.” The transplant recipients who attend these Games showcase the healthy lifestyle they have chosen and send a message of hope to those on the waiting lists.
Anzere, Switzerland was host city for the 8th World Winter Transplant Games March 4-9, 2012. The Canadian Transplant Association (CTA) is proud to have sent a total of 15 athletes and accompanying
people to Switzerland - our largest team ever at a Winter Games! The athletes competed in the Giant Slalom, Super Giant Slalom, Super G, Cross-Country Skiing, Biathlon and Snowboarding.
14-year old Oli Senger, a kidney recipient, competed in Slalom, Giant Slalom and the Super G. Oli’s Dad, Arnie, accompanied him to the Games. Maude Schnieder, a kidney recipient, hoped to bring home gold in Snowboarding with her friend Sebastian cheering her down the slopes. Pierre Grenier, a lung recipient competed in the Slalom, Giant Slalom, Super Giant Slalom and the Parallel Slalom. His friend Chantal was also there to cheer him on to victory. Jean Gravel, a 10-year heart transplant recipient, competed in the Giant Slalom and Biathlon. Jean brought his family and friends to help him celebrate his life in Anzere.
It has been my pleasure and privilege to be part of the Canadian Transplant Association since 1989 in a number of roles: athlete, Vice-President, President, and Team Manager. As this will be my last official duty as Team Manager, I would like to take this opportunity to say thank you to all the people who I have worked with and associated with in the 21 years of being part of the CTA family. You are all very special. The comedian, Bob Hope’s signature line says it the best, “Thanks for the memories.”
Fond regards Heather Fisher
Liver transplant recipient
également une fière chandelle à mes parents et amis qui me fournissent de l’énergie par leurs pensées et paroles.
Je vous reviendrai dans les prochains jours avec un sommaire des jeux. Des jeux inspirants où des gens remplis d’espoir et de fierté partagent leur bonheur de vivre. Ils savent apprécier ce grand cadeau qu’ils ont reçu et comprennent que la vie est fragile. Il faut en profiter, maintenant…
J’apprécie chaque moment, chaque éclat de rire et de joie de mes enfants. Quel privilège que d’avoir la santé, d’être ici pour apprécier ces moments uniques! Il faut prendre soin de ce qui nous a été offert. Dans mon cas, je l’ai reçu deux fois. Ce cadeau de vie n’a pas de prix et j’en prends soin, j’essaie de maintenir l’équilibre, de me garder en forme et de profiter de chaque moment. Nous devrions tous en faire autant.
Excerpt from: Fondation Institut de Cardiologie de Montreal
www.fondationicm.org/fr/jean-gravel-jeux-transplantes.html
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Youth Awards Debut in 2012
What an exciting time for the youth community of the Canadian Transplant Association. For the first time in the 25-year history of the CTA, Provincial and National Youth Awards will be presented in 2012. The awards recognize young people 17 years of age and under who demonstrate outstanding commitment to promoting organ donation and transplantation in their communities.
The CTA is very lucky to have such dedicated, responsible youth willing to donate their time and energy to create awareness for the transplant cause.
If you know someone in your community who fits this description, then send a nomination letter to your CTA Provincial Director to have them considered for the Provincial Youth Award. The
Director and their Awards Committee will review the nominees and select the award recipient. The names of provincial award winners will be put forward to the National Awards Committee to select the National Youth Award winner. The National Youth Award will be presented in July at the Canadian Transplant Games in Calgary during the Gala Dinner and Dance on the final night.
The CTA Awards Committee encourages all provincial representatives to present their youth awards before the end of April (during National Organ and Tissue Donation Awareness Month) and submit the winner’s names to the national committee by May 15th, 2012. Find the Awards criteria on the CTA website at organ-donation-works.org. Write a letter of nomination describing your candidate’s amazing qualifications and contributions to their community.
Good luck to all the candidates and congratulations to the incredible youth who are nominated.
Submitted by Margaret Benson CTA Provincial Director, BC
Member, Youth Awards Committee
“Love Your Kidney”: Life After A Transplant
Coming in April 2012 to Calgary, Ottawa and Montreal
Free recipient and caregiver information sessions
Learn more about how to lead a healthy and active life after a kidney transplant with local doctors, post-transplant healthcare professionals and fellow kidney recipients.
Details to come! If you are interested, please send an email to [email protected] and we will reply with complete event details as soon as they are available.
The “Love Your Kidney” information series is a joint initiative of the Transplant Adherence Program and the Canadian Transplant Association, in collaboration with Canadian transplant centers
« Soin De votre Rein » : La Vie Après Une Transplantation
Rencontres d’information gratuites pour receveurs et proches aidants En Avril 2012 à Montréal, Ottawa et Calgary
Apprenez-en davantage sur les façons de prendre soin de votre rein et de mener une vie active après une transplantation en compagnie de médecins de votre région
et de professionnels spécialisés en suivi post-greffe, de même que d’autres receveurs de rein.
Détails à venir! Si vous êtes intéressé, écrivez-nous à [email protected] et nous vous répondrons avec tous les détails dès qu’ils sont disponibles.
Les rencontres « Prenez soin de votre rein » résultent d’une initiative conjointe entre le Programme d’adhésion en transplantation (PAT) et l’Association canadienne des greffés, en collaboration avec les centres de transplantation canadiens participants.
World’s Longest Banner – A Canadian InitiativeIn our last issue of December 2011, Living Proof brought you the story of Peace River, AB donor Mom, Maria Stranaghan, and her campaign to raise awareness for organ donation by setting a Guinness World Record for creating the World’s Longest Banner. A lot has changed since then and I spoke to Maria to update our readers on her progress to date and plans for the coming year.
Banner FabricDue to an error made in the initial cutting of the fabric, a slight change has been made to the pattern. This has resulted in a new element being added to the project. After completion of the banner, some panels will be used to make commemorative quilts – some to be raffled to raise funds for the Gift of Life Arboretum and others donated (e.g. Palliative Care Units, Women’s Shelters).
Project MarketingInformation, pattern details and promotional materials are available at:
http://www.facebook.com/pages/•Worlds-Longest-Banner-2012-for-Organ-Tissue-Donation
http://worldslongestbanner.•blogspot.com/
Twitter – longestbanner20•
The new project website •www.worldslongestbanner.ca
Thanks to web designer, Brendan Samek, Grade 9 at Glenmary School, Peace River, AB
GoalsComplete 20 panels in time for •a photograph and “kick-off” announcement at Riverfront Park during NOTDAW Sunday, April 22, 2012
Start families talking about the •project and, especially, about organ and tissue donation
Engage 1000 Peace River families •or individuals in making panels for the banner
Enlist 20,000 Canadians to create •and send in banner sections
ProceedsOnce again, all proceeds from this project will support the Peace River Hospital and the Town of Peace River, specifically to upgrade walking paths in Riverfront Park and add a Gift of Life Arboretum to honour the many health and community workers that make organ and tissue donation possible including fire fighters, ambulance EMTs and Paramedics, emergency and ICU staff, etc.
DeadlineAll banner panels must be submitted by January 1, 2013 for completion and unveiling during NOTDAW 2013 and official Guinness World Record entry.
– Submitted by Maria Stranaghan
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EvEnTS Vancouver Transplant Trot5k and 8k Walk/Run Race Sunday, April 1, 2012 Burnaby Lake, BC
Activities will include a Zumba warm-up, bubbles, face-painting and dancing. Jack the Giant, mascot of the Vancouver Giants hockey team, will help cheer on the participants and hand out the milk chocolate medals to all those lucky racers who complete the event.
Jack the Giant will also present the first ever Provincial Youth Award at the Transplant Trot. Our young people have been very active and dedicated to promoting organ donor awareness and this is a great opportunity for the Vancouver transplant community to recognize that time and energy. It will be difficult to select a winner from among the worthy nominations.
Vancouver Green Light CampaignDuring National Organ and Tissue Donor Awareness Week (NOTDAW) April 22 - 29, 2012 we look forward to a number of activities including proclamations for NOTDAW by the city of North Vancouver, special advertisements throughout the province and a “show your transplant colours” Green Light Campaign. All the events are supported by the Canadian Transplant Association and BC Transplant. We are asking everyone to do their part to raise awareness about organ donation and to encourage all British Columbians to register their wishes
to be an organ donor. We want this year’s campaign to be the most successful ever proving that “Organ Donation Works”.
Edmonton Faculty Club Dinner & Silent AuctionThursday, April 19, 2012 U of A Faculty Club, 11435-Saskatchewan Drive, Edmonton, AB
Start Time: 6:00 pm Edmonton will host its annual dinner and silent auction to celebrate CTA’s silver anniversary as a non-profit organization. Dr. Sandra Cockfield will provide the keynote address as we join our University of Alberta Hospital colleagues in recognizing 50 years of the Northern Alberta Renal Program.
Calgary Transplant Trot Saturday, April 21, 2012 McKenzie Towne Hall
Three laps around Prestwick Pond Start Time: 10:00 am Event Fee: Free T-shirt and goodie bag for every walker. Prizes and more! For information, please email: [email protected]
2nd Chance Trail RideMay 5, 2012 Heinsburg to Lindbergh Return on the Iron Horse Trail
Sign in Time: 8:30 to 10:00 am Start Time: 10:30 am Supper, silent auction and entertainment starts at 6:30 pm Event Fee: $30/Rider Donation, Supper
$15/Adult $10/Children (under 10, must be accompanied by an adult)
For information contact Fae Irvine 780-724-4027 or email Sheila Nelson at [email protected]
Saskatchewan Transplant Trot 5k Walk/Run Race Sunday, April 15, 2012 Saskatoon, SK
Details are pending and will be sent to members via e-mail
Annual Adessa Auction - SaskatoonFriday, April 20, 2012 CTA presentation table and 50/50 fundraiser
Leslie Petter Memorial Transplant Trot 5k Walk/Run Race Saturday, April 28, 2012 Gibbons Park - London, Ontario
Start Time: 10:00 am Event Fee: $30.00 (includes free ‘Transplant Trot’ t-shirt & goodie bag) Awards – presented after the race to top 3 male and female finishers
Registration and Race Kits Register online at www.runningroom.com or in person at the London Running Room 620 Richmond Street by April 27th. Phone 519-438-8550 for information. Race Kits can be picked up at the London Running Room on Friday, April 27 from 5:00 - 7:00 pm. Late registration and kit pick up is available on race day at Gibbons Park between 8:30 - 9:30 am.
Parking West on Grosvenor or Victoria off Richmond Street and follow the Park signs.
To volunteer, or to support this event, please contact one of the Race Directors:
Janet Brady or John Michielsen [email protected] [email protected]
national Organ and Tissue Donation Awareness Month April 2012
Youngest Alberta Heart-Lung RecipientYou wouldn’t know by looking at four-year-old Cheyanne Mattern that she had life-saving surgery just two months ago. On Oct. 24, the little girl became the youngest in Alberta to undergo a heart-lung transplant after a whirlwind set of treatments and appointments.
Back in July, Cheyanne was out for a shopping trip with her mom, Amanda Mattern, but asked to be carried because she was tired. As they left the mall, her condition deteriorated quickly. Amanda said her daughter began to experience shortness of breath. I was putting a few things in the trunk, and she was having a hard time breathing,” said Amanda. I told her to sit down, but she turned blue, and then she fainted.”
Cheyanne was admitted to the Alberta Children’s Hospital in Calgary. Doctors diagnosed her with pulmonary hyperten-sion, a rare disease in which the blood pressure in the lungs’ arteries is elevated, putting pressure on the heart. Cheyanne’s father, Shaun Hill, said it all came out of nowhere. There may have been other signs, but if you don’t know what you’re looking for, it’s hard to spot them,” he said. It shattered my heart. You don’t want to think your daughter could die at such a young age.”
Cheyanne would eventually be transferred to the Stollery Children’s Hospital in Edmonton for further testing. Despite medical care, Cheyanne went into cardiac arrest and was put on life support. She would need a new heart and lungs to survive.
Amazingly, after being on the donor list for just a few weeks, a heart and two lungs from one donor became available, which doctors noted was extremely rare. The nine-hour surgery was complicated by the fact that the donor organs were significantly larger than the damaged organs they replaced.
Doing this in a child this size is rare,” said Dr. John Mullen, the surgical director of the lung transplant program. The other difficulty is that she also had the (life support) machine that was keeping her alive, making the surgery more difficult and challenging.”
In Alberta, there are fourteen pediatric patients awaiting a heart transplant and seven pediatric patients awaiting lung transplants. Her father said Cheyanne’s story is proof of the importance of organ and tissue donation.
– Excerpt from North Bay Nugget Saturday, December 17, 2011
Waterloo Transplant Trot5k Walk/Run Race Saturday, May 5, 2012 Waterloo Park, Waterloo, Ontario
Start Time: 10:00 am Event Fee: $30.00 (includes free ‘Transplant Trot’ t-shirt & goodie bag)
Awards – presented after the race to top 3 male and female finishers. More than 30 prizes will be drawn after the race.
Registration and Race Kits Register online at www.events.runningroom.com/site/?raceId=7660 OR in person at the Waterloo Running Room Unit #3, 15 King Street South by May 4, 2012. Race Kits can be picked up at the Waterloo Running Room Friday, May 4 from 4:00 - 7:00 pm. Late registration and kit pick up is available on race day at Waterloo Park between 8:30 - 9:00 am.
Parking In Waterloo Park, Westmount Road North Entrance, at the Baseball and Soccer Fields.
To volunteer, or to support this event, please contact one of the Race Directors:
Carol Dubeau or Joanna Mitchell [email protected] [email protected]
Annual NOTDAW CupHockey Game for Organ and Tissue Donation Awareness Sunday, April 22, 2012 Halifax Forum
Game Time: 4:00 pm Sponsored by www.lifepassiton.ca
Society members receive a draw entry for return airfare for 2 anywhere in Air Canada’s North America.
CTA celebrates 25th anniversary with a new commemorative pin.
For supplies contact [email protected]
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The Power Of Two – Documentary Film
Inspired by their 2007 memoir, “The Power of Two” offers an intimate portrayal of the bond between half-Japanese twin sisters Anabel Stenzel and Isabel Stenzel Byrnes, their battle with cystic fibrosis (CF) and miraculous survival through double lung transplants. Defying all odds, Ana and Isa have emerged as authors, athletes and global advocates for organ donation, and their connection to the CF and transplant communities provides rare insight into the struggles — and overlooked joys — of chronic illness. The twins’ receiving new lungs would have been unlikely in their mother’s native country, Japan, where organ donation rates are strikingly low. At the crux of a rising movement to change laws and stigmas, Ana and
Isa embark on a tour of Japan to inspire change in the hearts and minds of a culture resistant to transplantation.
Featuring archival footage and probing expert interviews, this poignant directorial debut of Academy Award nominated producer Marc Smolowitz, presents a multi-faceted portrayal of a society at a tipping point around this triumph of modern medicine. Back in the U.S., the twins thrive, rejoicing in their ability to breathe with healthy lungs, sharing their story, mentoring others on the same path,
and experiencing unexpected life milestones. Evocative without being sentimental, “The Power of Two” reveals the twins not as heroines but as authentic women who share our fears about mortality and inspire us to make a difference.
“The Power of Two” is a multimedia project that uses powerful, personal storytelling to engage communities in critical discussions and inspires action around organ donation and transplantation, and awareness of cystic fibrosis (CF) and
other chronic illnesses. “The Power Of Two” can be used as a valuable conversation starter for a topic that is often not discussed and widely misunderstood. The film illuminates the role of patient and public health advocacy in effecting change and improving care. The project will engage both general and targeted audiences such as the transplant and CF communities and the medical/health care community providing sponsors and nonprofit community partners the tools to educate, enlighten and entertain.
“The Power of Two” debuted in Calgary last month at the Picture This Film Festival. Screenings were booked to include Montreal and Toronto with plans to bring the film to Vancouver, Edmonton and, hopefully, back to Calgary during the Canadian Transplant Games. Go to their website www.thepoweroftwomovie.com/ to find out more or to book a screening in your community.
– Excerpt from film website
Outdoor Enthusiast Thankful for Gift of LifeIt is difficult to explain the gratitude and exhilaration I feel having a life again, so I will document a little of the before and after so you may feel it yourself. If you are a transplant recipient, you already know what I mean.
I had asbestos fibrosis and COPD which meant, for me, a slow, insidious decline in lung efficiency and general health. I ended up on supplemental oxygen 24-7 and had to ask my wife to slow down when we were out walking. Even with my condition, we managed a trip to Mexico for a vacation. My wife did a lot of things by herself because I couldn’t even enjoy a walk on the beach…never mind snorkeling or climbing the Mayan temple at Coba. It was all just too much work. I could, however, set my battery-powered oxygen concentrator at the edge of the pool with a hose long enough to reach the first stool at the swim-up bar.
I had one ‘dry run’ under my belt (that’s when they call you in but then have to cancel the transplant) but, in May 2010, I was given new lungs and began the road to my new life. Everything was going great - working on projects around the house, going for walks with my wife
(at regular speed) and working out at the gym 5 days a week. I even started ice skating again, something I had been doing
for more than 30 years. But in May 2011 I fell on the ice. An ambulance took me to the University of Alberta Hospital for emergency surgery to screw the “ball” back on to the long part of my femur and a cast was put on my wrist to stabilize a scaphoid fracture. Six weeks in a rehabilitation hospital non-weight bearing on that leg was a big setback and it still bothers me 9 months later.
But, in January, we went back to Mexico. This time I was able to run on the beach (though not well because of my leg), I went snorkeling and saw turtles, sting rays, a barracuda and a multitude of different fish and coral. But the big moment for me was to climb and stand
on top of the highest Mayan temple at Coba.
Now I’m back to the gym 5 days a week and planning to participate in the Calgary Games in July.
If you don’t think I am a happy, grateful man, just ask. When I finish crying, I will tell you I am.
I can’t pay back the donor family expect with my heartfelt THANK YOU but I can give forward. I have been talking to anyone and everyone who will listen to my story…including service clubs and businesses…letting everyone know about the value of organ donation and the precious gift of life it is for people like me with life-threatening disease.
– Submitted by Al Arntson
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Thank you for supporting the Canadian Transplant Association
Canadian Transplant Associationc/o N. Folkins
11649 St. Albert Trail NW
Edmonton, AB T5M 3L6