Up the creek with a boat load of paddles
by Ken Donohue
An air of anticipation lingers above the crowds that have gathered along the banks of Vancouver’s False Creek. From our vantage point, near the finish, we are unable to see the start, but word quickly comes down that the race has begun, and in an instant the boats are all in sight—nine in total. With rhythmic precision, the team’s paddles dip into the water—like the wheels of a steam train; there is a sense of power in each stroke. Screams of encouragement rain down on the racers—pushing them ever closer to the finish. The first boat to cross the line isn’t “ours”, but that doesn’t seem to matter. To most, “our” boat is just one of many, but to us, their effort and competitive spirit has made them all winners. And so it was as thousands of racers from around North America competed in the 2001 International ALCAN Dragon Boat Festival. Among them, was “our” boat, a special team made up of organ transplant recipients. Known, as the Gift of Life, the team raced to three respectable finishes.
Brought together in March, this team had three purposes—to participate in a research study analyzing the change in exercise tolerance after transplant, to pay tribute to the donors who gave the ultimate gift—the gift of life, and to illustrate that organ transplantation works, “The initial idea came from Dr. Levy [Medical Director, Lung Transplant Program] and Dr. Don McKenzie, Head of Sports Medicine at the University of British Columbia,” says Norah Flaherty, the team’s manager. “Dr. McKenzie had been involved with the “Breast in a Boat” teams that raised awareness about Breast Cancer. Dr. Levy had always been involved in clinical research and saw a need to study this change in exercise tolerance after transplant. “The dragon boat team,” says Flaherty, “was an interesting vehicle to perform this research”
The team began training twice a week in April. But before putting to water, all team members took part in two one-hour sessions in the lab at UBC to assess their stamina and physical abilities. After the festival, the team returned to the lab for a final set of tests. A control group from the False Creek Canoe Club also agreed to take part in the study. Dr. Levy hopes to have the preliminary data in a few months.
One of the biggest challenges was bringing together a varied group of transplant recipients and building a team. “When we first met, I had some initial hesitations about the kind of support we’d receive from transplant recipients” says Earl Howell, a liver recipient and team member, “But the enthusiasm was incredible, so many people wanted to get involved.”
Varying in age from 25 to 73, the team was representative of most organ groups. “It was fantastic to watch this group come together as a team,” says Howell. “The diversity of people and their physical capacities was immense, but there was this strong desire to be a part of the team.”
Howell also noted that there seemed to be an extra commitment to the cause. “The commonality of transplant recipients paddling together was very powerful,” he exudes. We all cared for each other in ways that we might not have had we all not had a common bond. There were times when people were sick or fighting infections and couldn’t make it to a practice, but the support that the team gave to those people was phenomenal.”
Gordon Kent,
who at 73, was the oldest member of the team, enthused about the experience.
“It was very rewarding getting to know other transplant recipients,” says
Kent. “I had done lots of canoeing and rowing, but that was 50 years ago.
The two-and-a-half minute races were very grueling, but no one had any physical
difficulties.”
Participating in the Dragon Boat Festival was really like the dressing on
a salad, the leafy bits and real impetus behind the project was to measure
the response of exercise in transplant recipients, and at least one participant
has felt an improvement in her health since the team began training. “I had
never done a lot of physical exercise since my transplant, but after training
and paddling in the Festival, I feel so much better, says Darlene Sunderland,
a kidney recipient. “I’ve started looking around to see what else I can do
to continue exercising.” Like most of the team, Sunderland was amazed how
the group came together. “The team was made of up of a diverse group of people
and ages, but the whole experience surpassed my expectations.”
Like a parent watching his child ride a bike for the first time, Dr. Levy watched from the shore as the team paddled along False Creek. “This whole project was extremely positive,” says Dr. Levy. “Everyone involved had the opportunity to rediscover their potential. They established a challenge and went after it.” Levy notes that many transplant recipients have lived with chronic disease, before being transplanted, and are usually afraid to push their limits. “This is a huge psychological boost for the recipients that participated.”
All of those I spoke with say that the team accomplished more than they had expected. The group is going to get together on a regular basis, and will be ready for next year’s festival.
Hope brings a new heart and a new dress
I remember when the sight of a cooler made my stomach churn, the sound of a beeper took my breath away, and a helicopter made me stop dead in my tracks. These were not ordinary, run of the mill days. These were days where coolers preserved more than potato salad, beepers were notices of life, and helicopters carried cargo so precious it was priceless.
These were the days when I was desperately waiting for a heart transplant. During the time, I learned a lot about myself and about life. I learned that nothing is carved in stone¾that frankly life isn’t fair¾and I realized the importance that hope plays in keeping you alive. I also became aware of the true meaning of the word “gift”.
I had hope that my beeper would not remain silent, that I would indeed attend my high-school prom the following year and that my dream of more tomorrows would come true. But the only way these things were going to happen was if I received a new heart. Whether I lived or died depended entirely on the decision of another family. No amount of wishing, a doctor’s skill, or money could save me, because life and the gift of life are priceless.
As the days turned into weeks and the weeks into months, my health continued to decline and I grew increasingly more fearful. The reality was that I could very well die on the waiting list, having never heard my beeper go off. It also occurred to me that if I gave in to that idea¾I wouldn’t make it. Although my life was slipping away from me, I wasn’t going to let my hope fade. Despite the fact I had no control over my fate I still had control over something just as crucial¾hope. No matter what happened to me I knew if I maintained my hope I would be okay.
Last summer, in the early hours, and after a three-month wait, I received my heart transplant. Funny enough, my beeper never did go off. It was a phone call that changed my life. On that day, I was not only given a new heart, but my life back as well. I will be forever grateful to my donor and their family for saving my life. In fact, I still find myself putting my hand to my chest, to my new heart, and saying, “thank you.” Because of someone’s selfless gift, because of the heart that beats inside me, I have a future. I also have a pink prom dress, silver shoes, and a purse to match.
Had I given up.
Had I let my hope of better days diminish, I don’t think I would have made
it. If you don’t have hope…you have nothing. I will always have hope and now
a heart that works.
Kidney wait-list & allocation process: new and improved
The BC Transplant Society recently implemented some important changes to the active cadaveric renal transplant waiting list and allocation process. In recent years, the waiting list has been steadily increasing while the supply of kidneys from cadaveric donors has been decreasing. Last year, the waiting list consisted of more than 500 people, and only 60 cadaveric kidneys were available for transplant.
In response to this growing disparity, some changes to the waiting list and allocation process have been made. Prior to this, the allocation of kidneys had been based on a points system. Once blood type and virus compatibility between the potential donor and recipient werre established, points were allocated for genetic matching (tissue typing), and time on the waiting list. The person with the greatest number of points was the person to receive the kidney.
The new system heavily emphasizes waiting time and reduces the importance of genetic matching. The rationale for this is that a good genetic match does not contribute to a better outcome unless the donor and recipient are a “perfect” genetic match. It is possible, though rare, that a perfectly matched kidney will become available. Blood type and virus compatibility will still be required and have not changed. In addition, priority will be given to:
1) patients
who are unable to dialyse
2) patients under the age of 18
3) patients who have a high antibody level and are at high risk for rejection.
Due largely to the increasing wait time for a cadaveric kidney transplant,
we would like to urge everyone to explore options for a live donor kidney
transplant.
A transplant from a living donor provides the best possibility for a good outcome, even when compared to a “perfectly matched” cadaveric kidney. Genetic matching with a living donor transplant is not essential, and excellent success is found with kidneys that are not a genetic match. In this way, it is possible for spouses, friends, and relatives to donate a kidney; all with comparable success rates. In 2000, 81 live donor transplants were performed. Approximately half of the donors were “emotionally” related rather than genetically related donors, and met with equal success.
For more information
on the new kidney allocation and wait-list process please contact the BC Transplant
Society locally at 604-877-2240 or
toll-free at 1-800-663-6189.
The following
organizations have kindly supported the Give Life at Work
program by running internal promotional campaigns
BCTV
Future Shop
BC Pension Corp.
City of Penticton
Canada Trust (Chilliwack)
Arpac Storage Systems
Merril Lynch (White Rock)
Baker Newby (Chilliwack)
Langley Home Support
Maywood Elementary
Salmon Arm Forests Dist.
Community Living Society (Langley)
Kaye, Toews, Caldwell (Chilliwack)
Bank of Montreal (Maple Ridge)
Bank of Montreal (Chilliwack)
Bank of Montreal (Burnaby)
Bank of Montreal (Abbotsford)
Bank of Montreal (Langley)
Bank of Montreal (Surrey)
Bank of Montreal (White Rock)
Emcon Services (Castlegar)
City of Chilliwack
Cattermole Timber
JS Jones Timber, Ltd.
Harrison Hot Springs Resort
The British Columbia Transplant Foundation, affiliated with the BC Transplant Society, helps to support transplant research, ranging from basic science to organ donation and ethics. You can help by supporting this research and thereby ensuring the best possible quality and access to medical treatment for transplant patients. For more information or to make a donation online visit the BC Transplant Society website at:
www.transplant.bc.ca
Readers may recall an article about Barbara Perceval and her father, Ray Hollins that appeared in the Summer ’98 issue of the Transplant Times. In that issue, Ray shared his story of receiving a kidney transplant in 1992, just before his 72nd birthday. He only waited five months for his kidney. Today, at 83, he continues to do well. Living with his wife of 57 years, Lillian, he continues to create new oil paintings and swims weekly at a local swimming pool.
Like her father before her, Barbara was on dialysis and waiting for a kidney transplant when we were first introduced to her and Ray three years ago. She had been waiting for a transplant since February 1996, but in December 1999, Barbara received a new kidney and a year and a half later she is doing well and has a new lease on life.
After nearly four years waiting for a transplant, her disease and the rigors of dialysis began to take its toll on her body—resulting in nerve damage to both her feet and ankles. Medication had limited success in controlling the pain. Her only hope for recovery was a new kidney. She says that living donation—while not an option for her—would have greatly reduced the waiting time for a transplant and would have lessened some of her medical problems.
She encourages everyone to register as an organ donor and both she and her father want to thank the families that gave them a second chance at life.
I read somewhere that you should not drink alcohol within two hours (on either side) of taking your cyclosporine. Is this true? Does alcohol have a different effect on a transplanted liver or kidney, than on a healthy liver or kidney? How much is too much at one time/sitting considering all the medication transplant patients take?
Thank you for your response,
Anonymous
Alcohol consumption, following a kidney transplant is permitted, but the key
is to drink in moderation. You should not drink alcohol for the first six
months following transplantation. After six months, you may enjoy the occasional
alcoholic beverage. Moderate drinking is no more than one drink per day. One
drink can either be 4oz of wine, 8oz of beer, or 1oz of spirits. Never drink
alcohol with your medications, particularly cyclosporine. Never have a drink
one hour before or after taking cyclosporine. Alcohol affects the absorption
of cyclosporine.
If alcohol abuse was a major health issue identified prior to transplantation and you signed a contract of abstension with the transplant team prior to surgery, then you must continue to follow your contract and not drink.
Liver transplant recipients shouldn’t drink alcohol for six months post transplant. Following that consumption of alcohol is allowed provided all liver function tests are normal. One should only have a maximum of four alcoholic drinks per week. Again, if alcohol abuse was a major health issue identified prior to transplantation and you signed a contract of abstension with the transplant team prior to surgery, then you must continue to follow your contract and not drink.
Everyone should drink responsibly and remember, “Don’t Drink and Drive!”
If
you have a question for Mrs.
D,
please send it to:
Mrs.
D
c/o Transplant Times
BC Transplant Society
West Tower, 3rd Floor
555 W. 12th Ave.
Vancouver, BC
V5Z 3X7
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On a rainy fall evening, I answered a phone call from Vancouver General Hospital. A gentleman on the other line informed me they had a kidney for me, and could I be into the hospital within two hours. I was so happy and crying at the same time.
Early the next morning, I was wheeled into the operating room, and received the most precious gift that one could bestow upon me—a kidney and a new lease on life.
I wish to take this opportunity to thank the family of the donor for their selfless act. Your decision lives on in the memory of your loved one.
A very grateful
recipient,
Patricia Huntingford
Living anonymous donation: where are we?
For the past year and a half, the British Columbia Transplant Society has been conducting a study looking at the psychological profile of the Living Anonymous Donor (or LAD), that is someone who would be willing to donate a kidney while alive, to a stranger. The team of researchers, headed by Dr David Landsberg, recently presented its preliminary findings at the Transplant 2001 meeting in Chicago in June.
Eighty-two individuals,
who had called BCTS over the past two years offering to donate a kidney to
anyone in need – a group they have called Unsolicited LADs, were recontacted.
Half agreed to take part in the study, and so far the team has analyzed data
on 21. Participants completed self-report measures of physical and psychological
health and took part in an in-depth psycho-social interview exploring important
aspects of their lives, and their thoughts and feelings about living donation,
and living anonymous donation in particular.
According to Dr. Landsberg, the researchers felt that five of the 21 participants
were very strong candidates to be LADs Others were excluded because of physical
or psychological limitations. Some said they wouldn’t be willing to abide
by the conditions of complete anonymity. Still others were excluded because,
in gaining more information about what was really involved, they were less
sure about actually going through with the donation.
The preliminary study also looked at the question of why people want to donate an organ to a stranger. Content analysis of the psychosocial interviews reveals that individuals had very diverse motivations for wanting to be living anonymous donors. Some saw it as a way to make a connection with another individual. While some of the participants commented that they would prefer to meet the recipient and perhaps form a friendship, others were more amenable to the concept of anonymity and saw the “connection” in a more abstract sense. One participant commented that even without ever meeting the recipient she would always know that she was in some way bonded to this unknown person and that would make her feel good. Other participants saw the donation as being the next logical step. They demonstrated a history of altruism in their lives (volunteer work, donating blood regularly, registered as a bone marrow donor etc.,). They were moved by the tragedy of someone having to suffer; especially when they could do so much to alleviate it at what they perceived as such little cost to themselves. Some participants were motivated to donate in order to open the doors for others to do the same thing and thereby do something to address the kidney shortage. Other participants seemed to be seeking to strengthen a poor self-image with their donation. They wanted others to know, that they would have done a good and unique thing, and this, they thought, would help improve their overall image. Still others were moved by a strong overarching belief system, (not necessarily religious), which guided them in how they lived their lives. Their commitment was strong and their philosophy was consistent in all aspects of their lives.
Dr. Landsberg
admitted that the findings surprised him. When it’s your brother, your sister,
your friend, your loved one [that you donate a kidney to], you see the result.
You go through pain and suffering, but it’s tangible …With living anonymous
donation, the most you’re going to know is that you did something good. Because
of the anonymity, you’re not going to be able to know the recipient at all.
A lot of people feel really strongly that organ donation may be too much to
ask of people, even if they’re willing to do it. These people, Landsberg says,
are actually an extraordinary population.
Although the researchers stressed that not enough data analyses had been done
as of yet to make any reliable conclusions at this point, they also said that
they were encouraged by the results. “The fact that there would be a number
of individuals who would consider giving this amazing gift to a stranger,
individuals that seem rational, is promising for the future of living anonymous
donation in Canada.
Each year, the BC Transplant Society conducts a public opinion survey on the public perceptions and attitudes regarding organ donation. Between February 8th and 10th, a random sampling of 506 British Columbians were interviewed by telephone. As well, two questions were included on a national telephone omnibus of 1004 adult Canadians between February 21st and 25th.
Results indicate that over the past year, the profile of the BCTS has remained steady among BC residents. When aided 61% say they have heard of the BCTS, which is in line with the measure from last year, and up significantly from the 31% in 1997.
Awareness of Ways to Officially Indicate Intentions
In previous years, respondents were asked, “There are a number of ways that an individual may express their intention to donate organs or tissue. Which ways are you aware of? This year, BC residents were asked, “In BC, how does a person officially express their intention to donate organs or tissue.”
47% named the driver’s license decal as the official way for individuals to express their intentions, followed by 28% who mentioned the provincial registry. Residents outside Greater Vancouver were more likely to believe that the official way to indicate permission was on the driver’s license [54% compared to 39% for Vancouver residents].
Once aided, nearly half of British Columbians have heard of BCTS’ computerized organ donor registry. This number has continually increased over the past few years.
Attitudes on Over-Ruling an Organ Donor’s Wishes
Eight in ten Canadians clearly believe that family members should not be able to over-rule a person’s decision to be an organ donor. Only one in ten are of the opinion that the potential donor’s decision should be able to be over-ruled by family members. Another 10% had no opinion.
Interestingly, this belief grows stronger as we move westward. While 70% of residents in the Atlantic region think that family members should not overturn an organ donor’s intent, this number increase to 86% among British Columbians. Despite the fact that a majority of Canadians believe an organ donor’s wishes should not be overruled, only half claim to be aware that recorded wishes on organ donation must be respected by law and cannot be overturned by family or health care professionals.
Source: MarkTrend Research. BCTS Registry & Ad Tracking Survey, March 5, 2001
Universal Referral: year-end summary
Two years ago, the Human Tissue Gift Act legislative initiative—Universal Referral and Training—was introduced to British Columbia. All Provincial Health Care Facilities, equipped with mechanical ventilators, are required to refer their deaths and are now reporting. The following graphs illustrate, the overall number of referrals, the solid organ donor referrals and the reasons for non-conversion of solid organ donor referrals.
The total number of referrals was 3,227. Of the total, 919 were immediately disqualified for any type of donation due to absolute contraindications. 2,176 were potentially suitable for tissue and eye donation and the remaining 132 were potentially suitable for solid organ donation.
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