Greetings from South Africa to all the participants, family and friends we met at the Manchester World Transplant Games. We look forward to meeting you all again during the 1997 World Transplant Games in Sydney.
When asked to comment on our thoughts on the World Transplant Games, I believe the following letter received from Teddy Betchoo, from East London, South Africa, describes fully the feeling of all South African participants. Enjoy!
Dear Hilary,
I would like to express my thanks to you Hilary for all the organisation involved in making this trip possible, and also to the sponsors.
I have enjoyed the experience of a lifetime at the World Transplant Games which was held in Manchester. I must admit that I did not expect such strong competition, I expected to see transplant patients and not such healthy people with a zest for life.
I did not win any medals, but came back to South Africa all the richer for the experience, and with new hope for achieving more from my life. Before this trip l lived from day to day trying to get the most out of life, with no long term planning; not knowing what the future had in store for me. But now I am planning my future because there were people out there that showed me that there was plenty to achieve in the future. It is unbelievable that in spite of all the pain, anguish and traumatic experiences, the transplant patients of the world still have so much hope, camaraderie and selfless love for life, with no traces of bitterness but the chance to be healthy and alive again.
So much that is taken for granted in normal circumstances. It definitely is an experience that every transplant patient should experience in life if possible. It is an experience to share with others in detail. When relating this to our friend back home we had them in tears and goose bumps, especially when you tell them about the quality of health, in the camaraderie, the sharing, the similar experiences and emotions shared at the Games, makes them sit back and wonder. It is an experience that should be experienced first hand. It is an experience that I will treasure all my life.
Regards, TEDDY BETCHOO
Dear Mr. Slapak,
On behalf of the Board Council of the Penhellic Renal Patients' Association (including C.A.P.D. and Transplantation) we would like to congratulate you for the excellent and successful organising of the 10th World Games in Manchester, England (August 14-201995).
We like to thank you for the assistance that you have offered to our Association's team in order to participate these Games, and we hope that in the future we shall accept similar treatment.
These Games, as you very well know, except the contest part, are also in a world sponsoring for the ideas of organ donation and social re-entry for the people with special needs, and our Association, is very proud to bo participating in such a great event, and being a part of this wonderful human celebration of courage and hope.
Dear Mr. Slapak
During the games in Manchester,
I did not introduce myself to you. So, I will try to do it this way.
My name is Kees-Jan Cecchi from The Netherlands. About four months after the WTG in Budapest in 1991, my second Kidney, this one I received from my father, rejected.
In 1992, I wrote you a letter with the request if you could write the preface for our sponsor-book we needed for the Games in Vancouver in 1993. I could not participate in these Games because I was not transplanted any more.
When I heard that in 1995 the WTG should be organised in England, I really wanted to go to Manchester. In the first place, it was too expensive for me. Fortunately, two companies (Fresenius and Nutricia) decided to pay all the costs.
In Manchester I had the time of my life. I did not know that I missed my friends that much. After four years Budapest 1991, for me it was a World Transplant Reunion.
Friends from all over the world meeting each other during the WTG. I would not have missed it at all. I also met a lot of new friends.
Two sisters from South Africa came also to Holland. I showed them Amsterdam and other interesting places. My other new friends, I hope to see them again in Sydney in 1997. Then I hope to be there again as a participant and not as a haemodialysis patient such as in Manchester.
I am now already looking forward to see my "family" during the next World Transplant (Reunion) Games in Australia. I hope to see you again in Sydney in 1997.
Greeting, Kees-Jan Cecchi, The Netherlands.
THE DEVINE MS. C - As told to Cricket Fox by Carol Devine.
A Newfoundlarnder who'd had a transplant asked if I'd ever heard of any such thing as a Transplant Games So I phoned the Kidney Foundation in Montreal (headquarters for the Games then), and they told me all about them. And soon I got a letter back saying l was on the Canadian team. l practised swimming.
The first Games that I took part in were in New York city in 1980. My donor sister came with me, and cried the whole time time. As I carried the flag for my team, we marched up the Avenue of the Americas. Brenda was trying to take pictures, but tears kept coming. She was overwhelmed with joy and gratitude that it had worked - that I was so healthy.
My cousins living in New York and New Jersey came to see me swim. About six or seven Canadians were on the team.
I competed in the following Games - in 1982 Athens, 1984 Amsterdam, 1987 Innsbruck, 1989 Singapore, and l missed the Games in Hungary. One month prior to the Games in Budapest, l found out I couldn't compete because I needed more foot amputations due to diabetic complications. l underwent the treatment and set my sights on the next Games in Vancouver (1993). It was very important for me to be in the Games even though I knew l wasn't able to compete at that time due to ongoing foot problems. At the games I found an even greater source of hope and encouragement shared by all supporters, recipients and caregivers which I needed at that time in my life.
The support and love and never-ending encourageinent from family and friends and medical staff at home has always been my largest source of strength. Adding these support bases together, l often feel that I must surely be one of the luckiest people in the world
I find it possibly to make long-reach plans, but knowing that life can throw its curves in, l want to really live to the extent of my abilities each day. l don't want to wait for things to happen to me in life - l let them happen and I make them happen.
I feel that when I first found out about the Games, they became part of me and I became part of them. To meet old friends and to make new ones.
When things looked so dark, l was always able to remember that there were possibilities for improvement. Although my future is at best uncertain, today I am one of The Living Proof. To those friends of mine, known and unknown, hold on to your hope as strongly as you hold onto life.
From Caroline Tahourdin - Member of BRITISH TRANSPLANT TEAM
Caroline feels that the Games are too elitist and competition should be limited to competitors up to 2 years after their transplant .
She also feels that the World Games has become too expensive and that transplantees should make greater effort to publicise their results.
Thank you Caroline. We are always ready to hear views from our members although we do not always agree with them - ED.
From Heather Fisher, CANADIAN TRANSPLANT GAMES ASSOCIATION
Dear Maurice,
It was nice to see you looking tanned and healthy in France. Once again an excellent job was done by France. Everyone appeared to have a good time. And there were only a few minor in juries (to be expected at any skiing event).
I believe you stated that the selection committee chose Tiburg as the site for the 1999 Summer Games. I agree with your choice, after seeing and hearing their presentation I can understand why it was the preferred site. They demonstrated that there was total commitment from all levels.
The suggestion that the Council meeting take place during the third or fourth week of May 1996 is fine with me. Olivier, l believe had some concerns over that date. He mentioned that their Nationals are being held during the third week of May. l certainly understand that he would want to be in attendance at these Games. Therefore, I would not be opposed to another date and time.
WiIl you be sending out an agenda? If so, I would like to add an item to it. During the opening ceremonies in Vancouver, a young Canadian transplant recipient sang a song (one that he wrote the words and music to) I believe that it fundamentally expresses the feelings of every transplant recipient. What I'd like to propose is that we, the World Federation adopt this song as ours. I would like to send a copy of the tape and the words to all the Councillors. They can listen to it and review the words before the meeting.
I have spoken with Gloria and passed along your regards. Our board will be meeting this Sunday to make the final preparations for our National Games (June 28 - July 1, 1996). Yesterday I received an award, It reads, "In Recognition of Athletic Excellence". I was honoured along with 9 other individuals in the city. I was not only pleased that I had been chosen but that they had picked a transplant athlete. There were between 800 and 1,000 people in attendance at this dinner (fund raiser). A good size audience to hear and see how well transplantation works.
I look forward to hearing from you about the up and coming meeting.
Sincerely yours,
Heather Fisher.
Letter to Dr R.V. Yadav, FICS, FACS, Kidney Transplant Surgeon,C-8, Press Enclave, New Delhi -110017, INDIA
Dear Dr. Yadov,
This is a formal latter to confirm that the World Transplant Games Federation give every support to the All India Transplant Sports Meet in 1996 in New Delhi.
I know that you will be particularly careful to make sure that the participants are in good physical condition,and have practised the sports which they are about to perform. I am confident that with your long term background kidney transplantation there should be no problems.
It only remains for me to wish you very well and host that your excellent initiative will bear fruit.
Yours sincerely, Maurice Slapak.
Ahould anyone wish to give advice or support to India, please write to Dr. Yadav.
From Tom Drevikovsky, CZECH Team Manager
Dear Professor Slapak,
It was very nice to meet you again in Pro-Loup. One always realizes, how important it is for all of us to have such festivals as the Summer and Winter Games certainly are, where the transplanted people can meet and commonly discuss their problems and wishes. And we are only the top of the glacier, because there are hundreds of other transplanted colleagues behind in every country, which would never join these Games for different reasons, but which support their native representatives. And it is really a big support for dialysed patents, who spend infinite hours in the dialysis centres, waiting for the miracle of the transplantation, which could bring them back to normal life. Believe me, I know what I speak about; l began to be treated by the artificial kidney in 1979 and spent on the dialysis chair more than 7 years. I have behind me three transplantations, an unsuccessful one in 1981, a good one in 1983 and finally the third one in 1988, which allowed me to join the Games for the first time in Budapest.
Our organization is named the "Association of Dialysed and Transplanted Patients, Their Families and Friends of Dialysis" and was established in 1989 (just two months before the velvet revolution changed completely the life in our country). The purpose was to help dialysed patients to get the support and advantages which was often rejected by the state officials due to their ignorance and disinterest. There are big differences in providing the demands and rights in different regions of this country. The beginning was very hard. No money, no spaces and unwillingness from everywhere. There are two permanent employees in our association. All the other involved people are volunteers. We heard about the Games for the first time in 1990. The former "red regime" did not like to let people see how everything was in the west. Communists preferred to keep the population in ignorance and twisted the truth.
There was one participant, who went to the Games in 1989 In Singapore, but it was more or less a private visit sponsored by Fresenius (Mrs. Chabrova). I was invited to organise our participation at the Games because of my sport background and because of my knowledge of English. So we joined your Federation officially in 1991. It is not easy, even now, to make some companies give us financial support but things are improving. But I hope it will go better in future and our team will also grow in munber of participants.
Our address is Leva str. 10. It will most probably change during the Spring of this year
Please send any correspondence regarding the WTGF to my home address. My home phone/fax number is 42-2-2421 7101 and the address Balbinova 28, 120 00 Prague 2, Czech Republic.
Sincerely yours,
Tom Drevikovsky, Czech Team Manager .
News from AUSTRALIA
There is No Gift Like The Gift of Life by Lisa Cuthbertson
(Lisa is an Australian Bone Marrow Transplant Recipient aged 26 years currently completing a university degree in the performing arts industry. Competitor at 8th and 10th WTG and 2nd WWG. Active in the promotion and support of the Australian Bone Marrow Registry.)
Those of us who have had a second chance at life, know full well what it means. However, in the business of our day to day lives we often lose sight of this very special gift. The Games remind us of this precious gift, and how lucky we are to be standing, let alone swimming or running. They give us a goal to work towards and a chance to express our gratitude to all those who have been involved in our recovery.
The day I heard of the opportunity for bone marrow transplant recipients to re-enter the Games was one of the happiest for me. Having competed for the first time in Singapore in 1988 I was very disappointed to think that this was my first and last time, as bone marrow transplants were then excluded from the Games. I rate the Games as the highlight of my life and an event which serves to have a significant impact on my outlook and energy for life.
By 1991, the Australian Bone Marrow Donor Registry was established and the Registry now has 27,281 registered donors. The Registry aims to have lOO,OOO donors nationally. Transplants between unrelated individuals are currently life saving in 30 to 50% of cases. I hope through our involvement in the Games we can help publicise the need for all organ donation in addition to helping build the Registry's numbers.
Attending the Games has been one of the most inspiring and rewarding experiences of my life and to meet so many people who have overcome such odds to survive, let alone compete, is an uplifting experience. The atmosphere at the Games is a vibrant buzz of people who are living for the day and doing it with a smile. I would like to thank all those who fouyht to have bone marrow transplant recipients as part of the team and I hope that the 'T-Bones' will make a significant and very positive contribution to the Transplant Games.
I would like to express on behalf of all bone marrow transplant recipients, past competitors and future ones, a very big thank you to all those involved in arguing our case and for giving us the opportunity to participate in one of the world's most dynamic and worthwhile events.
Nikolai Tilkidjiev - Bulgaria (Kidney)
"In Bulgaria there are no transplant services. Occasionally they do transplants from relatives, however this was not an option for me. In the Urnited States it costs $100,000 for a transplant. In India it costs $20,000. It was very difficult to raisethe money and many of my colleagues from the University helped to raise the money for me. In October 1994 I went to a lady who is a fortune teller who told me I would have a transplant in January 1995 abroad and said that I would stay at this country for 23 days. It was very interesting for me! I did not think it would be possible to collect this money, but by the end of 1994 I had raised all the money. We travelled to Bombay and I had very good specialists. I was in hospital in Bombay for seven days and after this I went directly home. I returned from India on the 23rd January!
In hospital it was the first time for me to think about it all. It was a real challenge for me and here I am! These are my first Games and I am just a beginner and I hope to come to Sydney - it's all about participation."
The 1996 U.S Transplant Games will be held August 22-25 on the campus of the University of Utah, when over 1,500 athletes are expected to participate. The primary sponsor for the Games is Sandoz Pharmaceuticals Corporation. The U.S. Transplant Games are open to any individual who has received a life - saving organ transplant - heart, liver, lung, kidney, pancreas or bone marrow. Athletes will compete individually for medals in Badminton, Bowling, Racquetball, Road Race, Table Tennis, Track and FieId, Bicycling, Golf, Swimming and Tennis; in addition, there will be team events for approximately 52 teams. The organisers point out that the success of the Games is due in large part to the hard work and planning that goes into local teams.
Among the special events at the Games will be the 5k DASH FOR DONATION, a road race for athletes, families, friends and health care professionals to promote organ awareness. The ATHLETES VILLAGE, in which Games participants can review results, participate in activities, recieve free product samples, and more.
The excitement of CLOSING CEREMONIES where the Outstanding Male and Female Athlete honors will be awarded.
DONOR FAMILIES Donor families from around the country are invited to participate in a program created just for them.The National Donor Family Council is planning sharing sessions, workshops and other activities for families' education and support.
Salt Lake City, Utah, home of the Warsash Mountains, the Utah Jazz and the 2002 Winter Olympic Games, welcomes the 1996 U.S. Transplant Games. Getting to Salt Lake City is easy. Nine major airlines serve Salt Lake City International Airport with over 550 flights a day. The airport is just ten minutes from downtown and 15 minutes from the University of Utah campus.
Excerpt from the National Kidney Foundation Newsletter - United States of America
A rare and often fatal liver disease had so damaged 3 - year - old Trine Engebretsen's liver that her doctor told her mother to buy a black dress for her daughter's funeral.
Kidney disease almost ended his life and did end the award - winning surfing career of Richard Salick, a one - time member of the Dewey Webber U S. Professional Surfing Team.
Jeff Swanson spent six months living inside a sterile bubble at the Cleveland Clinic to ward off infections impacting his cardiomyopathy, a severe virus of the heart.
Thanks to life-saving organ transplant suryeries, these three and many others are alive today and by no means observing life on the sidelines. Each is revelling in their second chance at life, and each also recently won medals competing in the first-ever U.S. Winter Transplant Games.
Inspired by the tremendous success of the U.S. SummerTransplant Games, hosted by the National Kidney Foundation since 1990, the 1995 U.S Winter Transplant Games (held February 3 - 7) provided the first ever opportunity for transplant recipients in the USA, from novices to extreme skiers - to take to the slopes here in the U.S. in an organized transplant athletics event. And, the Aspen, Colorado, location proved to be an awe-inspiring one with mountain elevations as high as 11,675 feet and Alpine and Nordic runs challenging the best of athletes.
Gary Green our Councillor and Director of the U. S. Tranlsplant Games has formally applied to host the 1998 3rd WORLD WINTER GAMES at Salt Lake City home of the 2002 Winter Olympics.
Transplant athletic events "dramatically promote the great success of organ transplantation today" noted A. Bruce Bowden, NKF Chairman, "and this event was no exception". Moreover, Bowden added, "the renewed spirit and purpose of transplant recipients also helps call attention to the still critical need for organ donors in this country."
From Opening Ceremonies when athletes from across the country were welcomed to Closing Ceremonies recognisng each participant and honouring donor families, personal expressions of joy, fun, exhilaration - and yes exhaustion - were felt by one and all. Medal presentations held each day of competition were met with thunderous applause and cheers from athletes, families, friends and sponsors.
Several Winter Games participants, in fact, had their organ transplant surgeries at the University of Colorado Transplant Center, including August (Augie) Reno Jr. who received a kidney transplant just four months before competing in the Winter Games. A 16-year resident of Aspen and a local City Councilman there, Augie assisted in much of the local publicity about the event.
Augie also made many new friends at the Winter Games and was reacquainted with some old ones as well. Robert Pensack, a fellow competitor who hails from Steamboat Springs Colorado, was once Augie's roomate at the University of Colorado Transplant Center. A 1992 heart transplant recipient, Pensack is a psychiatrist by training and recently wrote a book, "Raising Lazarus", about his life - long struggle with congenital heart disease.
Luckily, these two Colorado competitors remain friends and both went home with medals and fond memories.
OUTSTANDING ATHLETES
Also rising to the occasion was Jeff Swanson, of Mentor, Ohio, who won a total of five medals in Aspen - one Gold each in the Giant Slalom and the Dual (Parallel) Slalom. Jeff was also awarded medal in the Silly Slalom race proving he is still a kid at heart. Finally, Jeff's impressive medal tally also earned him the title of Outstanding Male Athlete of the Winter Games.
Not to be outdone, Mary Shea, of Sandy, Utah, won five medals in Aspen - a gold medal in each of the five competitions she entered. A 1980 kidney transplant recipient, this mother of four and financial adviser by day, certainly exhibited a unique athletic strength and spirit that did not go unnoticed by her fellow competitors when she was named Oustanding Female Athlete of the Winter Games.
Thanks also are to be extended to the following individual race sponsors, many of whom personally cheered on our athletes: Associated Medical Services, Aspen Valley Sports Institute, Kenyon Consumer Products, KSNO - The Mountain and Presbyterian St. Luke's Medical Center.