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The Living ProofCanadian Transplant Association www.organ-donation-works.org
Issue #34 Fall 2011
World Transplant Games Göteborg, Sweden June 2011
Thanks
The Homecoming Celebration
Remembering Tom Quinet
A Treasured Memory
A Tale from Down Under
President – David [email protected]
Vice-President – Margaret [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]
NS – Trevor [email protected]
Inside This Issue ...President’s Corner ...................................................................................... 3
Thanks ........................................................................................................... 4
The Homecoming Celebration .............................................................. 7
Remembering Tom Quinet ..................................................................... 8
World Transplant Games Göteborg, Sweden June 2011 ................................................................ 9
My First World Games ........................................................................... 12
Canadian Transplant Association – Saskatchewan Region Family Picnic June 5, 2011 .................................................................... 12
Putting My New Kidney to Good Use .............................................. 13
A Treasured Memory .............................................................................. 14
Second Kidney March Marks 20th Anniversary for Kidney Recipient ............................................................................... 15
An Australian Transplant Recipient’s Story ................................... 16
Heather Fisher – Nurse, Counselor, Team Manager and Sports Woman ................................................................................. 17
Back in the Game .................................................................................... 18
My Second Family ................................................................................... 19
Canadian Transplant Games 2012 ..................................................... 19
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 November 30, 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.
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President’s Corner David Smith, Kidney Recipient, Edmonton, AB
As I glance at the calendar, it is hard to believe that summer is almost over and the 17th World Transplant Games in Göteborg, Sweden are just a sweet memory for those of us that had the opportunity to attend. Th e games brought together a wonderful group of transplant recipients, donor families and friends from around the world in the celebration of health, hope and happiness, and the Gift of Life received from the act of a generous individual.
While we make hundreds of friends at the games, we no longer have to wait two years to see them again thanks to the modern era we live in. Social media sites allow us to share our experiences with thousands of recipients and friends who weren’t able to attend and give us the ability to feed up-to-the-minute content to newspapers and television networks during the event. I only see this getting better each year, allowing us to share with the world how well we are doing as transplant recipients.
Recipients continue to inspire one another by sharing with their social contacts all of the organ donor awareness events they are a part of in their local communities or around the globe. Many recipients have a big ‘Bucket List’ which they have started while waiting on the transplant list and during the post transplant recovery. We hear of great sailing adventures, cross-country rides, expeditions and foreign travel to name just a few things.
Whether or not the intent is to raise awareness or inspire others, the end result is there.
As individuals, by living each day to the fullest and making the most of our health, we are paying tribute to our donors and donor families and the healthcare professionals who have followed us over the pre- and post-transplant years. I always look forward to hearing about your future endeavors while continuing to pursue my own goals and dreams.
With only ten months to go, the excitement is building as we prepare for the 6th Canadian Transplant Games in Calgary, Alberta. With always so much to celebrate during the games, we will also be celebrating the Canadian Transplant Association’s 25th anniversary year and the Calgary Stampede’s 100th anniversary. Stay tuned to our website and your email as we’ll be getting more information out to you as it becomes available.
See you in Calgary!
Dave
ON THE COVER
World Transplant Games
Göteborg, Sweden June 2011
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Dear Living Proof readers
ThanksDear Mom, Dad, John, Patty, Michael and Dan,
Over the last couple of years, and even more so, over the last few weeks, as I’ve inched closer to the 20-year anniversary of my kidney transplant, I’ve thought of all I’ve been able to do since my transplant, the places I’ve been able to travel since I was freed from dialysis, and the appreciation I have for how fragile and precious life is. My life has been blessed and enriched not only over the last 20 years, but even more so in the 6 ½ years prior to my transplant when I learned to live with acute kidney failure, because I learned valuable lessons that have given me courage to face the unknown, patience to wait for the right time, understanding that things always happen for a reason, and faith that I’m in good hands when I trust Him, wherever my life and health may take me.
What’s stood out most as I’ve thought back though, is how blessed I am because of the support and love of my family throughout my life, and especially during those 6 ½ years on dialysis – how they instilled in me, hopefulness, optimism, love and faith. I don’t know how to say thank you enough, so I hope that by sharing at least a few examples of moments that have stood out for me over the last 26+ years, they will know and feel in their hearts how much I appreciate and love them, and that those feelings never change, no matter what happens or may happen in life.
Before I do that, though, I want to acknowledge my healthcare team – nurses,
doctors, unit clerks, dialysis techs, pastoral care, dieticians, social workers, housekeeping staff and so many others at the University of Alberta Hospital. I feel I had the best care possible and I’m thankful to this day that they looked after me when I didn’t even know what the kidneys did, or how important kidneys are to the human body.
I’m thankful to my donor and donor family because they made a decision to donate their loved one’s organs to save a stranger – me. The gift of life is the most selfless gift a person can give to another and I’m still amazed at how my donor family could make such a decision during a difficult time. I can’t even imagine what it would have been like to lose a loved one, especially knowing my donor was only 14, the same age as my youngest brother, Michael, when I received my transplant. I hope that looking after this gift as best I can, can give them comfort in knowing they have given me a new life.
How do I even begin to thank my family? There are so many memories I think back to where they supported me, encouraged me, loved me and were there for/with me. I could probably write a book, but will only include a few for today.
Thank you:- for taking me and being with me in the Royal Alexandra Hospital when I was first admitted – I felt scared, confused, nauseated and extremely tired, but you were there to talk to the doctors and hear and understand what they had to say, and make decisions for me because I was too sick to comprehend things
- for waiting for me and coming into my room to give me a hug and run your hand over my forehead after the stab catheter was inserted in my abdomen that same night because I needed urgent dialysis.
- for coming in after that procedure and so many others (nasal tube insertions, surgeries, renal scans, kidney biopsies, tests) – seeing your faces made me feel so at ease. I know it was harder for you than it was for me to go through those times because at least I was having something done to help make me better – but the looks on your faces often spoke of the desire to help, yet being helpless because there was nothing you could do. Please know that your presence, support and encouraging words were exactly what I needed during those times because it DID make all the difference in making me feel comforted and cared for.
- for holding my hair up and rubbing my back while I kneeled over the toilet throwing up from the nausea, and for bringing me a cold facecloth to put on my forehead.
- for visiting me every day (sometimes a few times a day) either from home or school or in the evenings - the countless miles you put on the vehicles, the money you spent on parking, and the many bus trips you made. Your visits always brought something new for me to look forward to.
- for giving me a hug and/or a kiss before you left the hospital – it always made me feel better and helped me to sleep.
- for bringing me the poached egg on toast you prepared at home, wrapped up in tin foil
Normally, the articles in our CTA newsletter are “short and sweet” ... tell a quick story, show some pictures. But every now and then, I think we need to slow down and take a moment to reflect. Last issue we dedicated a section of the quarterly edition to the “circle of life” – births and deaths, lives celebrated at their beginning and their ending.
This issue, I’m taking the liberty of sharing a different celebration with you; a celebration of 20 years of life made possible by the selfless gift of an organ donor family. Kathy Tachynski shares her memories and her gratitude for those 20 years and I know that her words will ring true for so many of you. I have had the privilege to hear many such stories and know the miraculous, sometimes overwhelming, gift that is organ donation. Please enjoy Kathy’s “Thank You card”
Jennifer Holman Editor, Living Proof
4
and dishcloths and brought on the bus with you. It had just the right amount of pepper and smelled and tasted so good. I remember eating it so fast because nothing beats home-made food. I could also see how relieved you were that I was able to eat something since the hospital food was not very appetizing after a while.
- for bringing me a fresh homemade bun and then nuking it in the microwave on the unit (for 3 minutes) only to open the door and find a rock-hard bun – I still laugh about that to this day.
- for getting an extra blanket from the unit supply cart when I was cold, or a clean pair of pyjamas (the thicker blue ones that I liked) when I needed a change.
- for bringing me pyjamas from home (freshly-washed) so I could feel more comfortable and not worry about my butt hanging out.
- for preparing the big home-made feasts (chicken, meatballs and gravy, cabbage rolls, salad, vegetables, mashed potatoes, dessert, etc.) when I came home from hospital for a day-pass. The food tasted soooo good and being with everyone was better than any medicine or treatment for my soul. Leaving to go back to the hospital was always so hard.
- for getting me a glass or water or anything else I asked for when I was home – you were all there for me for every beck and call (I could see how it would be easy to take advantage of such great service....which at times I did, even though I was perfectly capable of getting up myself and getting what I needed).
- for being there to pick me up after a dialysis run when my blood pressure was low, my legs crampy, or my vision a little blurry after the run. Especially in the wintertime, being able to get into a warm vehicle and crank up the heat (because I was always so cold) while one of you drove the car so I could either close my eyes and rest, or we’d visit, or listen to a good talk-show or nice music on the radio.
- for waking me up early in the morning (gently nudging my shoulder or tickling my
feet) and for letting me sleep in a few extra minutes, because it was so hard to get up and get the energy to go to school.
- for heating up hot water for the hot water bottles to warm my peritoneal solution bags ... four times a day over the course of a year and a half.
- for helping drain the used peritoneal solution bags into the toilet so many times for me.
- for reminding me to mask and scrub my hands before I did my exchanges – because you cared that I do things right to avoid infections.
- for making breakfasts and lunches in the early university years when I was too tired to and just wanted to sleep in.
- for having the courage to step forward to be tested to be a kidney donor.
- for going through the angiogram and other tests, which required you to lay as still as possible for 12+ hours post procedure. It hurt a lot to see you go through that pain and testing for me.
- for carrying my books to class when my blood pressure felt low – and not once did you complain.
- for running ahead from the Chemistry Building to the Tory Lecture Theatre to save me a seat when I was too dizzy/dehydrated to walk faster.
- for carrying the empty containers I needed to take home with me over a weekend to do 24-hour urine and stool tests ... and more so, for helping me carry these containers back on the bus on Monday morning in your backpack to bring into the lab – no one ever knew!
- for helping me drink those awful Ensure milkshakes that summer (when I couldn’t stand the look or taste of them, especially the strawberry flavoured one) – it helped keep the dieticians away because they thought I was finishing them myself. (We fooled them good!).
- for reminding me how important it is to keep my faith and to attend church on a regular basis to give thanks.
- for getting ice chips or chicken broth for me on my dialysis session when my mouth got dry or I was thirsty.
- for coming up to the dialysis unit so many times to pick me up – the staff got to know you all quite well – it’s because of you that I got the special attention and treatment (they still ask about you when I bump into some of the nurses who are still there).
- for driving me to dialysis so many times, even though you were sometimes going through your own problems – I’ll never forget how touched I felt and how proud I was to drive in your car with you. That’s when you also introduced me to Frozen Ghost’s, “Dream Come True” – I still love that song! “He ain’t heavy...he’s my brother” still makes me teary and the day I heard it driving in the car with you will always be a special memory for me.
- for helping me adjust to a renal diet by soaking potatoes and carrots in water to leach out the potassium, so it was one less thing I’d have to worry about.
- for scheduling birthday celebrations, Christmas Eve dinner, or other events around my dialysis schedule so I could also attend with everyone else.
- for taking other university courses while I finished my degree so we could graduate together.
- for being the first person I saw when I woke up and turned my head after my transplant – we both shed a tear and although no words were spoken in that moment, I think we both knew what the other was thinking – how thankful we were that I was going to be okay again, yet sad for the donor family who had just lost someone.
- for coming to visit me after I had my transplant. I remember walking towards the waiting room and seeing you there, fighting back tears and me fighting tears back too – I was speechless. I wanted to hug you so badly but because my immunity was so low right after the transplant due to the high dose anti-rejection drugs, we had to keep a distance for the first few visits. I really missed those hugs and cherish each one I can have today.
5
Thanks – cont’d- for getting me those little containers of cranberry juice from the hospital pantry after or making toast with honey for me It always tasted better when one of you made it and brought it for me.
- for fi lling out my menu in the hospital, especially when I had it memorized and didn’t want to look at it anymore. It made me feel good that you guys actually enjoyed fi lling it out for me.
- for letting us have the navy car to drive to university (so I wouldn’t have to be exposed to germs on the bus after my transplant) – that excuse worked well for us to get the car!!
- for keeping me in your prayers – whether it was for surgery or just my general health – your spoken and silent prayers mean so much – more than you know.
- for helping me to keep my kidney disease quiet, from friends and even at work for a while, especially in the early years when I didn’t want anyone to know, so I could just be treated like everyone else and feel as ‘normal’ as possible.
- for taking paska or fresh peas to my appointments for Dr. Ulan – your ways remind me so much of how Baba and Dido would do those thoughtful things.
- for encouraging me and being excited for me when I took my fi rst plane ride on my own to Vancouver for my fi rst World Transplant Games in 1991 and for driving out all the way to Vancouver to cheer me on in my events and make that fi rst Games such a memorable one.
- for sharing your experience from closing ceremonies of looking out at the fi eld where all the transplant recipients joined hands to form a big circle and you could hear the music playing, but when you looked out on the fi eld, you didn’t see anyone. Your interpretation of what happened to you that day was that none of those people would be on the fi eld that day (including me) if others had not made the decision to donate their loved ones organs. I still use that in my talks to this day and it still chokes me up 20 years later.
- for taking your own personal vacation time to go to Kamloops, Australia, Sherbrook, St. Johns, Windsor, London, Sydney, Quebec City and the games in Edmonton – your support taking photos all day, fi nding the perfect photos, cropping them, fi nding music that would fi t just right, and putting together DVD’s for a number of games. I can’t express how much that meant to me; it was such a beautiful gift for everyone who received one and will always be cherished
- for attending long meetings with me and Helen and then laughing in the car ride back with your jokes and imitations till we were all in tears.
- for helping gather donations, making great contacts and bringing forward suggestions and other ideas that we could use to make the Edmonton Games something we can all be proud of.
- for volunteering your time at so many events helping set up/tear down tents and chairs, cleaning up after our yearly CTA family picnics, gathering silent auction items and helping with the dinner at the Faculty Club each year to support us.
- for carrying my bags to tennis/track at the games so I could save up my energy before my competitions.
- for the hours and hours of tennis practice, off ering tips, sacrifi cing your own knees, to help me. I just wish I could have made you prouder and played better so I could really show everyone how good I can play from the tips you’ve taught me.
- for letting me watch you guys play so I can watch your technique. You make it look so easy, but I really enjoyed watching those good, long rallies.
- for the make-shift high-jump pits at home you’ve made for me and coaching me to ‘look above the bar’ and to ‘move my arms’, so I could jump higher.
- for the hours you trained me at other track events like running with the resistance band, running at the track in St. Albert, practicing long-jump at O-Leary, coaching me at shot-put and to give it all I can. Having you at the events when I competed was so helpful to give me tips to do better for the next time I was up. I always felt so proud to have you present at those games and everyone else always loved you too.
- for making me laugh countless times sometimes even for no reason – we’d just break out in contagious laughter.
- for fi xing my garage door, or power outlets or hot-water tank, or my car, etc. etc. – so
6
many things, and cutting all those tiles and everyone working together to get the job done.
- for cutting the lawn and looking after fertilizing and trimming to make it one of the nicest lawns in the neighbourhood.
- for shovelling my driveway, without even asking. Sometimes I’d open my garage door to fi nd it all done and I know it was one, two or all three of you when you watched a game next door.
- for the times we’ve gone shopping and found great deals – always fun.
I know there are so many more things I could add to the list, but to save a few trees, I’ll stop here for now.
As a transplant recipient, I think it’s important for us to thank our families (often) in whatever way works – they’re with us through our journey, so I just wanted to acknowledge all families of transplant recipients and THANK YOU for all you do for us.
And to my family – Mom, Dad, John, Patty, Michael and Dan - thank you for everything past, present and future and know I always love you.
– By Kathy Tachynski
Can you imagine cycling 1200 km from Banff , Alberta to Vancouver, British Columbia? Not an easy endeavor to be sure, but 16 riders completed the marathon “Gear-up4CF” trek in June to raise money for Cystic Fibrosis (CF) and to raise awareness for organ donation and transplantation. What an amazing feat!!
One of those riders was Blair Smith who was featured in the spring edition of “Living Proof”. Blair dedicated the ride to his wife Sandra who is living with CF and had a double lung transplant one year ago. In fact, Sandra celebrated her one-year transplant anniversary while Blair was completing the ride. On the fi nal day of the ride, 32 additional riders joined the group of marathon cyclists including my husband, Brian Benson, and myself (CF survivor and 12-year double lung transplant recipient). I had never met Blair and Sandra but we corresponded by phone and e-mail and were excited to meet each other to participate in such a big event for the CF and transplant communities.
Brian and I met Blair in Chiliwack the night before the fi nal 140 km ride. We spoke of our journeys – through transplant and through the ride. I was in awe and deeply appreciative of what Blair and the other riders had accomplished. In turn,
Blair was excited to meet someone 12 years following a double lung transplant, a rarity in the CF community. It was an emotional meeting for both. We couldn’t wait to meet for the fi nal day’s ride and catch up with Sandra at Children’s Hospital for the homecoming celebration.
Brian and I rode our 50-pound tandem bicycle while most of the marathon riders had much lighter (17–22 pound) bikes, although I’m sure they felt more like 100 pounds after their 1000+ km trek in the past 9 days. Needless to say, the tandem was always one of the last bikes to arrive at the rest stops, but Brian and I were never without smiles on our faces.
At the Finish Line, over 250 people waited in anticipation for the cyclists to come in. Sandra Smith was among those waiting at Children’s Hospital. It was a very tearful reunion complete with hugs, kisses and grateful thank-you’s. Afterwards, Sandra gave the Welcome Home address. She spoke of the amazing feat that Blair and all the marathon riders had accomplished and thanked them for their hard work and dedication. Sandra also spoke about Cystic Fibrosis, organ donation and transplantation and how her life had changed because of the selfl ess decision a donor family made one year ago.
She encouraged everyone to register their wishes to be an organ donor and give the “Gift of Life.” It was very moving – let’s just say there wasn’t a dry eye in the crowd.
Th e hugely successful event raised over $160,000 for Cystic Fibrosis research while also raising awareness for organ donation and transplantation. Blair and Sandra Smith and Brian and Margaret Benson are now connected, not only through Cystic Fibrosis, but also through the “Gift of Life.” Congratulations to all the cyclists for their amazing strength of spirit.
– Submitted by Margaret Benson
The Homecoming Celebration
Photo: (L to R) Blair Smith, Sandra Smith, Margaret Benson
7
Remembering Tom QuinetTh e fi ght for Tom’s life is over, but the impact of his life is not. Th omas Quinet, a 14-year-old Ottawa boy with Cystic Fibrosis (CF), had been on the transplant list for 14 months hoping for a new pair of lungs. None were found on time and he died Sunday, September 4th at the Hospital for Sick Children in Toronto.
Th e boy and his parents had moved to an apartment near the hospital to be ready for surgery at short notice. It was the second time the family had been through the process. Four years ago, Tom received his fi rst double-lung transplant. Th e surgery allowed him to live a normal life, even playing sports including participating in the Canadian Transplant Games in Windsor, Ontario in 2008. But after two-and-a-half years, his body began rejecting the new lungs, something that happens in 50% of transplant cases. Since early August, he was hooked up to a ventilator. Still the family hoped. Until Sunday, they were still organizing their lives around the chance of receiving that magic phone call saying a new pair of lungs was available.
But doctors told them Tom’s liver was not doing well preventing his blood from clotting and ruining his chances of surviving a surgery. Tom was taken off the list.
“We had really no option,” said Marc Quinet, Tom’s father. Later that day, Tom was removed from life support. “With the transplant option being removed from the table there was no viable purpose to continue his life because he would have suff ered,” Quinet said. Th e family waited for more relatives to arrive from Ottawa and Montreal. “At fi ve to eight,” Quinet said, “Tom passed away.”
Now, Quinet, and his wife, Suzanne Camu, are turning their focus to the cause of organ donation. Quinet, 50, said Tom was their only child and that, while their lives have a gaping hole, he was at least grateful to have been able to give his full attention to Tom.
Quinet said Tom was a very generous-spirited boy. Before he went into the hospital, he was thinking about others
who needed help. “He said, ‘Dad, make sure that we make a contribution to the Horn of Africa famine.’ And he went out of his way, a couple times, and said, ‘Did you do it? Have you done it?’” Tom, whose life was extended by transplant once, was able to help someone else, by donating his eyes.
Tom’s friends in the Canadian Transplant Association will fondly remember him and keep Marc and Suzanne in our thoughts and prayers.
– Adapted from a story by Zev SingerTh e Ottawa Citizen, September 6, 2011
88
World Transplant Games Göteborg, Sweden June 2011
Although Canada’s team was smaller this year than at previous World Games, we finished 21st of 54 countries. Ivo Babic and Mervin Chen, two of our veteran CTA members, joined the team again this year. They made me chuckle when they sent in their forms - both requested to play in the age category below their own so they would be “challenged by playing in a younger age category”…..and both returned home with gold and silver medals. Our youngest athletes, Ronald Antoroy and John Frias, didn’t let the older generation have all the glory. Both these young men contributed to Canada’s over all total of 19 medals.
We had a number of new athletes join the team this year so, the evening before the games started, we had a small get-together in our hotel. As a way of getting to know each other, everyone was asked to reveal five things about themselves. We learned that one of our new members, David Cervi, was not only new to the World Transplant Games but brought his new bride along with him to celebrate. At the meeting, I had the privilege of announcing Canada’s Flag Bearer. At each Games, the honour is bestowed upon an individual who consistently works to promote the values of the Canadian Transplant Association, the success of transplantation and the importance of organ donation awareness. This year the honour went to Sandra Holdsworth.
Most team members, including newcomers Lloyd Mangahas, Scott Ouellette, Rob Sallows and Jon Hols brought family members with them to Sweden. The World Transplant Games are certainly about competition - recipient athletes from around the world competing against each other, showing themselves and the world what they’re really made of. But it’s not just about the training and competition. It’s also about the camaraderie; the bonds formed and life-long friendships made with others who have shared a common experience. And it’s about the joy of the supporters and family members seeing their loved ones excelling at a sport and giving it their all. They can all
remember the times spent beside a hospital bed and know that, if not for that altruistic gift of life from another that they would not be at the Games competing and enjoying life.
Göteborg was a fairly easy city to navigate and most of the events were less than a 15–20 minute ride on the city bus/tram from the hotel. The conference centre where we enjoyed most of our meals was just 5 minutes walk. Sweden chose to host the Games during the week of June 17–25 in order to celebrate their “Midsummer Eve”, a traditional national holiday and the longest day of the year (the summer solstice). The opening ceremony took place at one of the city’s largest open squares and Prince Daniel of Sweden, a kidney recipient himself, gave a few opening remarks. The skies opened up and it rained throughout the entire ceremony, but nothing would dampen the spirits of the athletes as they marched through the streets of Göteborg waving to people in their windows and on the street.
The last day of the Games ends with familiar traditions. At the Athletics venue, the World Transplant Games Federation flag was brought forth, folded and presented to Mr. Willie Uys, the representative of the host country for the 19th World Transplant Games in Durban, South Africa. The ‘Circle of Friendship’ then brings the world’s athletes to the centre of the field for a warm, hand-holding cheer to bid the Games farewell. The closing event was hosted at Tradgardsforeningen, the final evening beginning with a dance around the Maypole, speeches and awards. We had a chance to try some of Sweden’s national specialties such as herring and potatoes and a beautiful dessert of fresh strawberries and cream. The final tradition is a dance where everyone, old and young, share their joy of life by kicking up their heels and swaying to the music until the wee hours of the morning.
Congratulations to medal winners:
Ronald Antonroy Bronze - 10 pin bowling
John Frias Bronze - 50 meter swim, Bronze - ball throw, Gold - 10 pin bowling
Aaron Cleugh Silver - 5 K time trial, Silver - 20 K cycle
Bob Rogerson Gold - golf singles
Marianne Thistle Bronze - golf singles
Lloyd Mangahas Bronze - discus throw
John Hols Silver - shot put
Ivo Babic Gold - table tennis (70) singles, Gold - table tennis (70) doubles, Silver - table tennis (60) doubles
Mervin Chen Silver - table tennis (70) singles, Gold - table tennis (70) doubles, Silver - table tennis (60) doubles
Robert Sallows Bronze - petanque doubles
David Cervi Bronze - petanque doubles** Medals: According to Sweden’s Results Website. If there are any
errors or omissions, please notify Heather Fisher so that I can have the website corrected, which will be followed by a correction in the next newsletter.
So until we meet again, “Thank You” Team Canada for being awesome and allowing me to be part of your experience at the XVIII World Transplant Games. Not everyone brought home a medal but, in my eyes, you are all winners at life. Keep up the good work! Hope to see you all in Durbin, South Africa in 2013.
– Submitted by Heather Fisher
9
2011 World Transplant Games
My First World Games
Th e Saskatchewan Region of the CTA met at the Saskatoon Forestry Farm Park and Zoo for a Family Picnic on June 5th. Th e day started out rainy but, by the time the picnic started, the weather had cooperated. All members brought food and helped in every way to make the picnic a BIG success!! Hotdogs, burgers, salads and desserts were enjoyed by the group. Following lunch, everyone was invited to join in games. We had a GREAT time either playing or watching the live action. Th ere were a lot of laughs!! We all enjoyed getting together with other transplant recipients and their families. Meeting new families and reconnecting with old friends was the highlight of the event. Some of our Saskatchewan members posed for a group picture - living proof that organ
donation works. All of us are grateful to our donors and their families for giving us a total of 139 EXTRA YEARS OF LIFE!! We are living life to the fullest ... because we got a second chance.
– Submitted by Carol Epp
Photo left to right: Orest Saskiw – Heart Transplant (11
years), Larry Kreklewich – Kidney Transplant (36 years),
Ron Zerr – Kidney Transplant (33 years), Carol Epp – Liver
Transplant (4 years), Sherry Duncan Paterson – Heart &
Double Lung (19 years), Sheryl Mamchur – Liver Transplant
(11 years), Phil Gleim – Heart Transplant (3 years), Ed Kutz
– Kidney Transplant (22 years)
I received my kidney in 1997 and I never once thought that I would ever be able to attend the World Transplant Games. Th is past June, it was a privilege to represent Canada at these games in Göteborg, Sweden. Well over a thousand athletes were in attendance and everyone was there for a purpose - to show the world
that organ donation works. I was a little overwhelmed by the whole event and, when I walked into the stadium behind my country’s fl ag, it was a very special moment for me. Prince Daniel of Sweden opened the games and he is also a kidney transplant recipient.
On the third day of the games, it was the singles golf competition and, again, I felt very proud as I won the bronze medal for Canada. Th at was a bonus! Th e real thrill was just being there. If people could see the passion for life that transplant recipients have! It really is not about the medals - it could be just fi nishing a race, or throwing a ball, or touching the end of the pool. What really matters is just to say, “Yes, we can do it!”
Th roughout these games, as well as the Canadian Transplant Games, (which
Alberta is hosting in Calgary in 2012) we must never forget to honour the donors and donor families. Th ey have made it possible for all of us to participate in these events. I have attended other Canadian games and make a point of going to talk to the donor families to say a simple thank you for all they have done. Without them, many more would not be with us today.
I always come away from the games with a whole new outlook on life again. I am one of the luckiest people alive because I am here. I have always had good support from my husband, children, family and friends. I have a wonderful medical team looking after me, so what more could I want. Maybe just a reminder to all, that organ donation works and we are living proof.
– Submitted by Marianne Th istle
Canadian Transplant Association – Saskatchewan RegionFamily Picnic June 5, 2011
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Putting My New Kidney to Good UseMy name is Heather Hockley and I live in Cranbrook, British Columbia. In 2008 I was diagnosed with renal failure and quickly required regular dialysis. I chose to go on ‘Cycler’ which meant I could dialyze during the night while I slept leaving my days free to work and enjoy time with family and friends. But I knew my best option would be a transplant. To my surprise, a friend came forward who wanted to be my donor. During all the testing to see if she was a suitable donor, doctors discovered my friend had cancer. Naturally, she was ruled out as a donor but it was a blessing they found her cancer early. Today after her treatments she is doing well.
I learned that patients can wait for a kidney transplant for as long as 10 years. Imagine 10 years…..waiting on dialysis…..in 10 years a toddler can go from learning to spell in Kindergarten to getting a driver’s license. And the hard truth is not everyone is even lucky enough
to receive a transplant. In British Columbia, all residents must travel to Vancouver for a transplant at either St. Paul’s Hospital or Vancouver General Hospital and remain in Vancouver for approximately 3 months after transplant for close follow-up by the medical and surgical teams. Th is can get very costly for transplant patients and their families. Th e Kidney Foundation helps patients during their stay including fi nding aff ordable housing.
I wanted to help the Kidney Foundation and, at the same time, create awareness for organ donation in the Cranbrook area. So, in June 2010, my partner Keith Gray and I hosted the First Annual Kidney Foundation Golf Tournament in Cranbrook, B.C. It was a lovely day and the event brought over 40 golfers to share great prizes, good food, tall stories and, of course, some terrifi c golf. Not only did we raise awareness for the donor registry, we also raised nearly $2,000.00 for the Foundation.
In May of this year I received a kidney transplant from a deceased donor and I am so grateful for my new kidney and my second chance at life. I didn’t think I would be well enough to host a golf tournament this year but, thanks to my donor and donor family, it is going to be a reality. With the help of some friends we will be holding the 2nd Annual Kidney Foundation Golf Tournament on September 18, 2011. Th e tournament is held at Mission Hills Golf Course in Cranbrook. It is a family par-3 course perfect for all ages and levels of golf. In addition this year we have a hole-in-one prize of $25,000.00 cash. Watch for our story and pictures in the next issue of Living Proof.
Today’s society recycles many things, newspaper, cardboard, glass……..why not add organs to that list and please register to be a donor – it really does SAVE LIVES! I am Living Proof.
– Submitted by Heather Hockley
Left to Right: Carol Hockley (Kidney Transplant - 2002)Sidney the Kidney (aka Jen Rea)Heather Hockley (Organizer & Kidney Transplant - 2011)Emma Rea (Niece and Proud Supporter)
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A Treasured Memory While waiting for my appointment at the Transplant Clinic at Toronto General Hospital in 1996, I picked up a brochure on Th e Canadian Transplant Games Association, now called the Canadian Transplant Association. Inside, I found information about transplant recipients participating at Transplant Games and other events after receiving new organs. I thought, “Th at would be something I would love to do one day” and I noticed that the next games were being held in Sydney, Australia. I took the brochure home with me.
On February 26, 1997, I received a life-saving liver transplant for cirrhosis caused by Primary Sclerosing Cholangitis. I recovered wonderfully, was able to play baseball only three months after my transplant and returned to work that September. Prior to my transplant I had been active in sports including track & fi eld, volleyball, basketball and fl oor hockey. After my transplant, I knew I had been given a second chance and wanted to start living life to the fullest. To that point, my only trip outside Canada had been my Florida honeymoon in 1988. I had an urge to travel and to continue being involved with sports. Th e Transplant Games seemed like a great opportunity to do both.
So, in April 1998, I contacted Linda Rowe, CTA Regional Director for Ontario, and told her I wanted to become involved with the organization. As a member, I attended social functions where I met other CTA members and transplant recipients. I immediately knew this was a group I wanted to belong to. In May 1999 I attended my fi rst
Transplant Games - the West Regional Games in Kamloops, BC. Th ere I met Kathy Tachynski, Marvin Meissner, Cricket Fox, Jamie Vermeulen (Bourassa) and other transplant recipients and their families. In September of the same year I attended my fi rst World Games in Budapest, Hungary with ten Canadian athletes, fi ve of whom were liver recipients from Ontario. I had a great time and won a Bronze Medal in Skittles (bowling) - in Hungary with people from all over the world who, like me, had an organ transplant! I was hooked.
Since then, I have attended every World, Canadian and fi ve US Games winning medals and meeting friends along the way. 12 years later I’m still in contact with many of them - friends from countries that I had only read about in books or seen on a map. Th is June, I attended the XVIII World Transplant Games in Goteberg, Sweden and had the honour of being Team Canada’s fl ag bearer. When Team Manager, Heather Fisher, a 28-year liver recipient, told me I would be the fl ag bearer, I was completely shocked. Th e moment was very emotional and heart-warming and especially memorable being presented by someone I have long admired and whose journey has inspired me.
I am a proud Canadian and truly love my country. I grew up in Aurora, Ontario and still extend Canada Day celebrations until my birthday, July 3rd. At each transplant games, I promote Team Canada and our country to those I meet from all over the world. I always bring Canada Flags, pins and souvenirs to hand out - people love getting them. I dress “Canadian”
and wear my team uniform with pride while competing in my events.
On June 17th. 2011, when I walked through the rainy streets of Göteborg with my teammates, I raised our Canadian fl ag high and thoroughly enjoyed every moment of that walk to the Opening Ceremonies. Walking along the parade route and seeing all the people in the streets and in the arena cheering us on, made me think of how far I had come since fi rst being diagnosed with PSC/IBD in 1992. It made me think of my transplant, my donor family, all the things I have done to live life to the fullest, all of the friends I have made and how lucky I was to be alive and have the honour of being Team Canada’s fl ag bearer. I walked proudly into the Opening Ceremonies with my fellow teammates and just tried to capture the moment, a moment I will remember for the rest of my life.
Th ank you to Heather Fisher and all my teammates and their supporters for cheering me on and for your support. It was an incredible honour to carry our amazing country’s fl ag and share our joy at a second chance to live.
– Submitted by Sandra HoldsworthTeam Canada Flag Bearer, June 2011
14 14
Second Kidney March Marks 20th Anniversary for Kidney RecipientAugust 28, 2011 marks the 20th anniversary of the day I received the gift of life through a cadaveric kidney transplant. On September 9-11, I walked the 3-day, 100 KM Kidney March to honour:
• my kidney donor and his family who gave me the gift of life,
• my family and friends who have been there through all the ups and downs,
• the healthcare providers at the University of Alberta Hospital in Edmonton who continue to provide exceptional care and
• God, my ultimate source of strength.
In my fi rst year of university I suddenly developed extreme fatigue, nausea, loss of appetite and night sweats. Doctors thought it was mono or the fl u, but my symptoms worsened and within days I began the fi rst of 18 months of four-times-daily peritoneal exchanges. I returned to university
in the fall but, after repeated episodes of painful peritonitis, I had to switch to hemodialysis – 4 hours a day, 3 days a week for 5 years. My weight dropped dramatically, I was physically exhausted and every blood transfusion increased my antibody levels making a donor kidney match even more diffi cult.
Th en the day arrived – I walked into the unit for my hemodialysis and learned there was a potential kidney for me. My emotions were mixed – excitement for my chance at a new life, fear that the transplant might not work, gratitude that my turn had fi nally come and immense sadness for my donor’s family who had lost someone so very dear to them. What strength and courage it must have taken to make that decision to donate their loved one’s organs. I was discharged from hospital within 10 days of my transplant and, a week later, returned to university to fi nish my degree. I have enjoyed so many experiences since my transplant, but I
am most thankful for the little things in life - a beautiful blue sky, the crunch of autumn leaves under my feet and all those things we so often take for granted.
Now, I volunteer with the Kidney Foundation and its Speakers’ Bureau and with the Canadian Transplant Association. I have competed in several Canadian and World Transplant Games since 1993 and I am thrilled to have participated in my 2nd Kidney March. Last year I met so many wonderful, inspirational people among the marchers and volunteers:
• a dialysis patient who received a kidney from his daughter a few months after the walk,
• a lady inspired to walk to lose weight (55 pounds so far with a goal of 40 more this year),
• a young man afraid of facing a future with kidney disease,
• the family of a young man who donated a kidney to his father and
• two sisters walking in memory of their 39-year old brother who died from complications of kidney failure.
Th ese and so many more people inspired me with their stories and their friendship with every step until I reached the fi nish line. Th e Kidney March is an experience I will cherish forever. Th ank you for your support, words of encouragement, positive thoughts and prayers.
– Submitted by Kathy Tachynski
15
A Tale from Down UnderIn July 1989 I was an ambitious detective in Adelaide, South Australia when I was suddenly struck down with end stage renal failure. Th is was a great shock as I had always led a fi t and healthy lifestyle. I was in a new relationship and enjoying life. Th e frightening diagnosis also presented me with a number of dilemmas. What would become of the career that I had planned? I knew I could not continue as an operational police offi cer. As a dialysis patient shift work would be out of the question so I faced income loss and signifi cant lifestyle change.
I was not physically prepared for dialysis as this prognosis was unexpected. I underwent immediate venous surgery to construct a fi stula in my wrist. My initial dialyses occurred in the Royal Adelaide Hospital and were via a central line in my chest. I must have appeared to visitors as the sickest patient in the dialysis suite. I was confi ned to a bed rather than a chair for the entire procedure and my vital signs were checked constantly. Th e Renal Unit staff was fabulous though, and their skill and support ensured that I always felt confi dent of my recovery.
After a few weeks I was stable enough to leave the hospital suite to dialyse at a satellite centre close to my home. I chose to dialyse on Monday, Wednesday and Friday afternoons. Th is allowed me to work for the majority of the day, and left evenings and weekends as time to feel “normal”. Th e dialysis machines were the style of the day but were tall grey beasts compared to today’s models. Th e emphasis at the centre was towards self-care and new patients were encouraged to learn how to independently needle and set up. I was prepared to face my fears and be in control as it would mean less time at the centre. When I learned this skill it was liberating and helped me feel a little more in charge of my illness.
My police colleagues were very supportive too. When I fi rst became ill, the offi cer
in charge of the department’s personnel section had rung to off er encouragement and discuss my need to transfer to an appropriate non-operational area. He said “You can go anywhere Liz. Where would you like to go?” I chose Recruiting and was soon to begin an entirely new career direction. Recruiting Section recruited one new course per month to start at the Police Academy. After eight months there it was an ideal time for me to move to the Academy as a trainer. As a former detective, I had a solid background and was ideally suited to the role.
Twelve months after my acute onset, I received a kidney transplant. Unfortunately the graft was unsuccessful and never began to function. Th e hospital recovery was a very sad time for me. It was not until I was back home and back to my routine, did I again look forward to an off er of a transplanted organ. Only eight months went by before my transplant beeper (yes, a beeper!) sounded. Th e next day was Sunday, 7 April 1991 and I received my wonderful gift of life. I am always thinking of the generosity and selfl essness of my donor family.
My health and vigour soon returned and I resumed the fi tness program that had been so important in my life. I heard about the Transplant Games and began training for the 1994 Australian Games. Th ese were held in the town of Shepparton, Victoria,
and I won fi ve silver medals. I was thrilled with this success as I had never been a sporting competitor. I then began a more rigorous regime and entered the 1995 World Transplant Games in Manchester, England. I was again successful and won 3 medals.
Th e most wonderful thing about the games though, was meeting so many organ recipients from around the world. I met some lovely Canadians! One gave me a t-shirt with the Canadian MapleLeaf and “Organ Transplantation Works. Th e Living Proof”. I loved that shirt and wore it until it fell apart! Recently, CTA President Dave Smith sent me a beautiful Canadian jacket from the 2009 World Transplant Games at the Gold Coast, Queensland. What a lovely gesture to help me celebrate my transplant’s 20th anniversary.
Well, I am still a police offi cer after 32 years. My current role is Supervisor of the Crime Prevention Section in the beautiful Barossa Valley Wine Region of South Australia. I married a policeman six years ago and we look forward to our retirement. I still enjoy normal renal function and am considering getting involved in transplant games again. One day we may just meet!
– Submitted by Liz McGregor
16
Heather Fisher – Nurse, Counselor, Team Manager and Sports WomanHeather Fischer had a liver transplant in 1983 – 28 years ago! In 1989 she became aware of the World Transplant Games and was excited to fi nd an event where she could enjoy her new-found health, continue her love of exercise and sport and help to promote organ donor awareness.
Th is year she is the Team Manager of the Canadian team and sits as a counselor on the World Transplant Games Federation counsel. Specifi cally she:
• makes sure that the team has all the information they need - what sports they are in, how to get to the venues, how to deal with overlapping events
• ensures family members have all the information they need as well
• communicates with the host country to make sure airport shuttles are arranged and city travel is organized so no one gets lost
• makes sure that everyone has the best time of their lives!
A veteran of many World and Canadian Games, Heather remembers what it’s like to be a newcomer to the
event. She loves to watch (and watch over) the new members of Team Canada. One of the greatest things is the chance to meet other recipients regardless of the country of origin or language barriers. Th e fi rst question is typically, “What are you – a liver, heart, kidney?” And then you want to know, “How long has it been since you had your transplant?” Every time you meet someone who survived longer than yourself, it gives you even more hope.
When she’s not working as Team Manager, Heather enjoys the opportunity to compete in her own events as well, including:
• 20 km cycling• 3 km run and 3 km race walk• Shot put• Swimming• Badminton
Every year, she likes to try a new sport.
When not participating in the World Transplant Games, Heather works as a nurse with patients with acute pain. Th roughout her thirty-six years as a nurse, Heather has seen every phase of transplantation from working with potential donors in ICU to assisting in organ retrieval and transplantation in the operation room. Heather’s empathy may be her best nursing tool – she knows what it’s like to be a patient. Heather was very sick from an early age but did not receive her liver transplant until the age of 29. She coped with the long wait and the post-transplant recovery by setting small, attainable goals such as getting out of bed, walking to a chair. Achieving
these goals boosts your confi dence to overcome the obstacles that get in your way at times. Heather is now a “double survivor” having recently completed treatment for breast cancer. Heather seems to have taken these life-changing experiences in stride. Her advice? “Set goals and be realistic about your goals.”
Th ank you, Heather….from all the recipient athletes both veteran and newcomer; from all the family members and supporters; from your friends and colleagues in the Canadian Transplant Association; from all the transplant recipients you have motivated and inspired over the years….for all you have done and continue to do on behalf of our Association and for the thousands of Canadians waiting on transplant lists across the country.
– By Jennifer Holman (adapted from WTG 2011 Blog June 21,
2011)
17
Back in the GameDouble-lung transplant gives goaltender chance to move from beer league to the big leagues.
Eight seconds into his fi rst game in two years, a slap shot ricocheted off Trevor Umlah’s breastbone. Th e goaltender sucked a breath into his new healthy pink lungs and touched his sternum. Th en he smiled and got ready to block the next shot.
“My only worry (was) that my sternum would not hold up, but that was put to rest in about ten seconds,” he laughed recalling the 2008 game. “I was really surprised that I still had the skills. I didn’t have the strength or the endurance at the time, but I still had the refl exes. My mind was still with the game.”
In March 2006, Trevor had to leave his “beer league” hockey team when his cystic fi brosis (CF) became so advanced that he needed a portable oxygen tank. Less than a year later Umlah was told he needed a double lung transplant to survive. He left for Toronto that June – the surgery isn’t performed in Nova Scotia. “It felt like lugging a refrigerator on my back everywhere I went,” he says. “Towards the end, I was ... tethered to an oxygen line so I didn’t have a lot of freedom. When I had the opportunity for a lung transplant and an improved quality of life, I jumped at it. Th ere was no decision for me.”
Some people wait months for a donor to be found. Umlah got the call about three weeks after he arrived in Ontario, as he was listening to a doctor tell him he would have to be put on a ventilator to breathe at night. He spent a month in the hospital
after the surgery and three more in rehabilitation. By the six-month mark, he was back in net.
Today, Umlah’s lungs are stronger, his goalie pads brand new. Th e Dartmouth man hopes both will serve him well when he tries out with the Elmira Jackals of the minor-pro ECHL. But Umlah doesn’t really expect to make the Jackals. “Th ere were no scouts looking for me,” he jokes. “I’m really doing this to promote organ and tissue donation. A lot of people may be hesitant to be an organ donor because they think the quality of the (recipient’s) life may ... not be up to their expectation. So I’m trying to show that this is the quality of life that can be achieved.”
Since Umlah’s transplant in August 2007, he has started biking again, and he runs and swims. He did all three sports together in his fi rst triathlon last month. And he’s back in the “beer league” hockey he’s been a part of for 22 years.
And while he doesn’t expect the New York state team to sign him, he hopes to hold his own against men 20 years his junior who have been groomed for the sport since they fi rst laced up a pair of skates. “I play at the rink on a weekly basis with a number of my buddies (and) most of them are in their 20s and 30s so they work me pretty hard,” he says. “I get a lot of diffi cult shots . . . so I think I’m as prepared as I’m going to be to face these pro-level shooters.”
And if he does get an off er? “Th en I’ve got a real big decision to make,” he laughs.
Trevor reports he was thrilled by how he was treated by the Jackals off the ice and by the fact that he was not given any special treatment on the ice. He did amazingly well in the high intensity practice Friday night, the 2 inter-squad scrimmages on Saturday and the fi nal game on Sunday. It all brought a lot of attention to organ and tissue donation awareness and to Cystic Fibrosis, Trevor adds. In addition to the local coverage in the Chronicle Herald and CBC Nova Scotia, Trevor’s story was also featured on ABC at http://weny.com/Sports_Jackals.asp?ARTICLE3362=9161418 and NBC at http://www.wetmtv.com/sports/story/Trevor-Umlah-A-Story-of-Hope-Perseverance/zov39q8udkiOYQxe0p-xaQ.cspx
To see more about Trevor and his activities to raise awareness for organ and tissue donation, you can also go to www.lifepassiton.ca
– Adapted from an article by Laura Fraser
Chronicle Herald
18
My Second FamilyGoing in to my fi rst World Transplant Games this past summer in Sweden, I had three objectives in mind:
1) To celebrate my journey with the worldwide transplant family as a newly transplanted recipient since my life saving gift on November 19th, 2009.
2) To have fun.
3) To do well in my events (tennis and athletics) and hopefully bring home a medal.
Concerning my third goal, I admit that I did, in fact, win a medal (in the most unusual way; but that’s another story). But to say that I accomplished my fi rst two goals is an understatement. More than winning a medal, the Games, for me, are about the shared camaraderie of being part of a worldwide network of such remarkable survivors - competing against them in my events, exchanging pins with athletes from over 50 diff erent countries or simply sharing my story across the dinner table at the Athletes’ Village. Th e
spirit and vigour of these people were quite infectious. I felt incredibly welcomed into a whole new family of people who taught me to really soak up this second chance and the beauty of this thing we call Life. I would like to thank our team manager, Heather Fisher, for all her dedication and support and, as well, my fellow Canadian team mates and supporters in Sweden for helping to make these World Games memories to last a lifetime!
– Submitted by Lloyd Mangahas
Canadian Transplant Games 2012Once again, the Canadian Transplant Association invites all organ transplant recipients, their family and friends to meet in Calgary July 16-22, 2012 for the 6th Canadian Transplant Games.
Did you know?
• Canadian Transplant Association will celebrate its 25th anniversary in 2012
• Th e Games will immediately follow Calgary’s very special Centennial Stampede (July 6–15, 2012)
So, you can expect the 6th Canadian Transplant Games to be among our most exciting yet! We will be hosting athletic competition in all age categories for track & fi eld athletics, swimming, tennis, table tennis, badminton, speed walking, 5 & 10 pin bowling, lawn bowl, golf, cycling and group events including volleyball and the coveted east-versus-west Canada Cup.
Stay tuned to the CTA website at organ-donation-works.org for up-to-the-minute details as planning proceeds. We expect to off er on-line registration for both participants and volunteers this year.
Th e CTA Executive remains committed to keeping personal expenses to a minimum to help ensure that fi nances don’t keep anyone away.
Don’t be disappointed! Save the dates. Watch for registration to open and get your name in early. Calgary is famous for its Western hospitality and they can’t
wait to welcome transplant recipients to their city to compete in this exciting event – a chance to show the world that organ donation really does work; a chance to honour and recognize the donors and donor families; a chance to make memories that will last a lifetime.
SEE YOU IN 2012!!
19
Thank you for supporting the Canadian Transplant Association
Canadian Transplant Associationc/o N. Folkins
11649 St. Albert Trail NW
Edmonton, AB T5M 3L6
