Living
Donation - Paired Kidney Exchange
A new option
The British Columbia Transplant Society is initiating a new program aimed
at helping recipients and their families when traditional avenues for living
donation have been exhausted. This program is called the Paired Kidney Exchange
Program.
What is a paired kidney exchange?
In a paired exchange program, living kidney donors who are blood type
incompatible or have a positive crossmatch with their intended recipient donate
a kidney to a selected recipient who faces a similar situation with their
own donor. In this manner, the two kidneys are‘swapped’ between
the two donor/recipient pairs.
Where to find
out more information
Donors or recipients who are interested in this program should contact the
BC Transplant Society:
Living Kidney Coordinator: (604) 877-2240
When
You Reach The End of The Rope, Tie a Knot and Hang On
by Allison Brown
Late this June, Carol Balderston realized that more than 12 months had passed
since she was told that without a new liver she was only expected to live
one more year. In 2000, Carol was diagnosed with end stage liver disease,
and within six months her health had deteriorated so quickly she was forced
to give up her work as a nurse, as well as two other part-time jobs and hobbies.
The liver failure caused such fatigue that often Carol was too tired to eat
after making a meal. As a result, she lost about thirty pounds in three months.
“I never anticipated going downhill that fast” Carol said.
After the bleak
diagnosis, there were highs along the way that helped restore hope and a determination
to live. Meeting a liver recipient, and seeing the colour in her cheeks post
transplant was a major motivator. Carol knew after meeting a healthy, vibrant
recipient that there was something she had to do to give back. Her goal was
to see more North Vancouver residents aware and registered as donors. As a
nurse, she was well aware of the seriousness and urgency of end stage liver
disease and the odds she and many other BC residents were facing, but she
had a plan to make a difference. With the help of her daughter, Julie, who
acted as her legs, she delivered Organ Donor Registration forms throughout
her community. Carol would call us at BCTS requesting more registration forms
be sent to her hospital room, from which she coordinated her efforts to have
the forms displayed in the hospital and other locations.
With highs, came lows. As time went on Carol grew sicker and was in the hospital
more frequently and for longer stays. For over three months Carol was in protective
isolation at Lions Gate Hospital where she continued her quest to promote
organ and tissue donation. During this time she became so tired she dreaded
being taken out of her hospital room, knowing how horrible it made her feel,
and how long it would take to recover from a short trip out of the room. She
thought she would never get a liver in time. Even with the constant support
of family, friends, and members of her church, Carol felt helpless.
In one of her lowest moments of doubt, Carol noticed a poster with an old expression, “When you reach the end of your rope…tie a knot and hang on,” She did feel as though she had reached the end. After reading that phrase she knew she wasn’t going to let go, so she hung on. In fact, she said, “I started praying harder than ever.” She was so confident that her turn was near, she started packing up her things in the hospital room to have them sent home. In fact, a conversation Carol and I had in late June rang true when I heard that she had been transplanted on July 3rd. Earlier that same week she had told me, “The long weekend is coming and I can feel it’s going to happen.” Days after that conversation Carol remembers a nurse coming into her room and saying, “We have a good liver for you, a good liver,” with that news she just began to cry.
Coming out of the transplant surgery she can remember feeling warmth, “I just wasn’t chilled to the bone anymore,”she says. Even though Carol says “my girls were extremely excited, everyone was so thrilled, and I was just trying to grasp that I had been transplanted”. It didn’t take long for Carol to realize her gift of life. In fact, within four weeks of her transplant she came to BCTS (as promised while waiting for her liver in hospital) to personally pick up a box of organ donor registration forms, motivated to begin giving back.
On the road to recovery Carol is thankful for the support of family and friends. She can’t wait to get back to her regular, healthy self, even more determined to promote organ donation. When asked how she feels about her transplant Carol says, “It is such a wonderful gift a family can give, there are no words to describe what I was given’. Now she can see colour in her cheeks, and she looks forward to helping those people waiting, in the same way she was supported.
New
Procedure Makes it Less of a Pain to Donate a Kidney
by Ken Donohue
It was as if the surgeon was playing a video game. His eyes
and concentration fixed on a television monitor, while operating a long instrument
in each hand. But a laparoscopic nephrectomy—removal of the kidney—is
no game. The surgeon deftly maneuvered past the liver, and searched for the
kidney. One medical resident held a long, thin camera, while another watched
intently on another monitor. A handful of nurses assisted with the surgery
and followed along on yet another television screen. The resolution was amazing—it
was like being taken on a ride through the body. Within minutes the kidney
appeared on the screen. It was much paler in colour than I imagined it to
be. Finding the kidney was the relatively easy part—identifying and isolating
the arteries and veins, which are attached to the aorta was time-consuming
and challenging. Once the kidney was ready to be removed, the ureter was cut;
clamps placed on the artery and vein, and subsequently freed from the aorta.
The surgeon then reached inside, and pulled the organ out from a five-inch
abdominal incision. The kidney was taken to a table at the back of the operating
room, where it was perfused by one of BC Transplant’s Organ Donation
Specialists. The organ was placed in a bowl of ice, and a cool solution run
through it. This process removes blood from the kidney and cools the organ,
which is necessary for preservation. A few hours later it was transplanted
into a grateful recipient
Live donor kidney transplants aren’t new to British Columbia. In fact, the first was performed in 1976, but what is new is the way in which the organ is removed. Traditionally, kidneys from live donors are removed using an open, flank-incision. Now they can be removed laparoscopically. The benefits to the donor are immense—less post-surgery pain and quicker recovery time; allowing for quicker return to normal activity.
Instead of a large, nine-inch incision that cuts across the patient’s side in traditional nephrectomies, the laparoscopic procedure involves a total of four small “punctures”—measuring less than a half-inch each—and a five-inch lower abdominal incision. This is about as minimally invasive as one can get when removing a kidney.
Dr. William Gourlay,
a transplant surgeon at St. Paul’s Hospital has performed more than 34
laparoscopic nephrectomies, and says there are some challenges operating this
way. “It’s different looking at a television screen, while your
hands are directed elsewhere. There’s no tactile feedback while handling
the tissues,” he relates. “The instruments only move in and out
and spin, but they don’t have the same articulated movements that our
hands are capable of.” The procedure takes about 30 percent longer than
the traditional method, but Gourlay notes it will become better and faster
with experience.
While there are a lot of benefits to laparoscopic nephrectomies, it is not
a procedure that can be performed on everyone. Gourlay suggests that if the
anatomy of the kidney is unusual—more than one or two arteries or veins—then
it may still be possible to donate, but the surgery should be done “open”.
As well, if the donor has had a number of abdominal operations, then they
may not be a good candidate for the laparoscopic procedure.
Thirty-seven year old Paul McNeil is one of the few British Columbians to have undergone this procedure. McNeil gave a kidney to his mother on June 20th of this year. “The minute my Mom went on dialysis, I offered her one of my kidneys,” said McNeil, in an interview three months after the operation. “No…no…and no,” was her response, McNeil remembers. His mother was on dialysis for two years before the transplant, but when her health began deteriorating, she changed her mind.
After six months of testing, the surgeon gave McNeil a choice between the laparoscopic or traditional surgery, but suggested that he may have to wait some time if he chose the laparoscopic option. “My mom was getting sicker, so I chose the traditional method, even though it would involve more pain and a longer recovery,” said McNeil. As it turned out, an opening became available for the laparoscopic surgery, and he was grateful they could make it better for him. The procedure is now also being performed at Vancouver General Hospital.
McNeil spent four days in the hospital following the operation, and after leaving the hospital was able to walk eight blocks to his home. McNeil says his employer, BC Rapid Transit Company (SkyTrain), was very supportive during the process. “I did what I could,” said McNeil, in explaining why he decided to give a kidney to his mother. “I didn’t want to live with the idea that I could have helped, but didn’t.”
by Susan Harrison
As the plane made its descent into Toronto’s International airport, I thought of what had inspired me to make this journey to London, Ontario to compete in the World Transplant Games.
Four short years before, I was in a hospital bed, surrounded by my family; preparing to say goodbye. I was just hours from death. And then a miracle happened.
In the midst of their own sorrow, a family came forward and donated their loved ones organs. Because of that extraordinary act of kindness our tragedy became a celebration of life. We knew that another precious life had been lost and so we grieved for that family.
Each year after my transplant, I send a letter of thanks to my donor family. Words always seemed so inadequate. I wanted to find a significant way to show them the incredible life they had given back to me.
Just eight months after receiving the new liver, I joined the Gift of Life Transplant Dragon Boat team. In 2003, my friend and dragon boat team mate, Margaret Benson (double lung recipient), returned from the World Transplant Games in France with three medals and wonderful stories of new friendships and amazing triumph over illness. I knew then that I had found a way to honour my donor. I would compete in the World Transplant Games, which were coming to Canada. I began training the next day for the three kilometre run.
There was a feeling of excitement and anticipation as the athletes from all over the world began arriving. The opening ceremonies was indescribable. Words can’t describe the feeling of representing your country and walking into a stadium filled with the roar of cheering spectators. We took our places and were seated with athletes from 46 different countries. The next group to enter the stadium were the donor families. Simultaneously sixteen hundred transplant recipients rose to their feet to honor these heroes.
At last, after training hard for two years, I was finally going to run this race. As we lined up on the street with approximately twenty-five competitors, I thought about how each one of these special women had their own story of beating the odds. Some may have received an organ from a live donor, but most were just like me—alive because of the courage and selfless act of a complete stranger. Even though we were competing in different age categories, Margaret Benson and I ran in the same race. As we waited for the start to be called Margaret held my hand high and shouted, “This is for our donors everyone!” We all started that race with tears in our eyes—united in our reason for being there—to thank our donors, doctors, and family members that helped us in our journey to become well again.
I ran across the finish line, and heard my brother yell, “hey, gold medal!” I didn’t believe I had actually won until the official placed a gold medal around my neck.
As we packed our bags to leave at the end of the games, I realized I had fulfilled my dream. Returning home, I gave this medal to my donor family, and hope they will always look at this medal as a symbol of hope, love and my extreme gratitude.
by Kathy Sinclair
I recently had the wonderful opportunity to volunteer on the medical team at the 2005 World Transplant Games held in London, Ontario this past July. There were 1600 participants from 46 different countries, representing a wide range of ages. The one thing the athletes had in common was they had all received organ transplants and the ‘gift of life.’
I have worked with many athletes in the past, but never have I witnessed such heart and courage as was displayed by every athlete I met during the course of the Games. I had one athlete tell me that she was running in honour of her donor and donor family. In fact, she said that by keeping fit, this was the best way she could take care of the precious gift she had been given.
While helping out on the cycling course, I found out that the Spanish team was going to have to pull out of the time trials and competition, as their bikes and other equipment had been lost by the airlines. Competitors from other countries quickly came to the rescue and offered the use of their expensive bikes and shoes, so that the Spanish team could compete. It was very clear to me that trust and generosity ran deeply at the Transplant Games.
Another example of true spirit was when a Hungarian swimmer filled in for a sick team member of their volleyball team so they were not disqualified. Unfortunately, this ‘heroic’ athlete fell and fractured his wrist during the volleyball game, but this did not stop him. He had come to the Games to swim¾and swim he did. The next day he competed in his swimming events with a cast on his wrist.
Luckily for me, there were not many casualties- the odd crash on the bike course, bee stings, swollen muscles, and of course, heat exhaustion from the 40 degree weather these athletes endured for the entire week. But the extreme heat conditions did not seem to affect this courageous group of athletes. They were all in London to prove to the world that organ donation works!
One full day was dedicated to donor families. I believe there were over 100 donor families in attendance. The Donor Recognition Day started with a 3km walk around the campus of the University of Western Ontario. The road was transformed into a river of green shirts worn by donor families. There was a special sense of camaraderie and celebration.
After lunch, there was an open forum, where donor families could tell their story. Each story was different, but the message the same—they were all glad they made the decision to donate their loved one’s organs—it was the natural thing to do. The Donor Recognition Day provided an opportunity for donor families to not only share their experiences, but also the opportunity to interact with transplant recipients and hear how the transplant has changed their life.
The recipients I spoke to said they really appreciated meeting donor families because it gave them the opportunity to have a real person to say thank you to. Many recipients said they had written letters of thanks to their donor family, but that never seemed enough. In meeting a donor family, even though not their own, the “thank you” seemed more real, more heart-felt.
As an Organ Donation Specialist, I do not often have the opportunity to see the other side of organ donation—the transplant recipient’s life restored. I wish more people could have experienced what I was lucky enough to have during the week-long competition. Clearly evident was the spirit of generosity and sportsmanship. Every athlete was a winner, and the true heroes were the donors and their families
Byam Cameron Memorial Scholarship
Byam
Cameron Memorial Scholarship for Heart Transplant Research
In memory of Byam, transplant recipient and former BC Transplant board member,
the Cameron family has directed a donation to fund the salary of a graduate
student
conducting transplant research.
(Arthur) Byam Cameron was born on May 10th, 1941 in Calgary, Alberta. He attended Queen Elizabeth High School and Southern Alberta Institute of Technology, and married Margaret in 1962, moving to the West Coast in 1965. Settling in West Vancouver with Margaret and daughters Leigh-Anne and Alison, Byam soon started his own company in the glass, glazing and aluminum industry.
As an entrepreneur and pioneer in the field, he built a successful distribution and fabrication business in Burnaby that was unique on the West Coast. His firm offered innovative products that, in many cases, revolutionalized the aluminum storefront construction methods. He was also an avid instrument-rated pilot.
Diagnosed in 1979 with idiopathic Cardiomyopathy, he continued his business, community involvement, and recreational pursuits, enduring two heart transplants and several operations and procedures.
He
was a Board Member of the BC Transplant Society and BC Transplant Foundation
and served on the Sunshine Coast Ferry Advisory Committee. Byam was however
best known for his sense of humour and ability to joke and smile with others,
even through the most difficult episodes of his illness. He was known by his
family as very positive guy, a great tease and the ‘smartest man they
knew’ who made a huge impact on their lives.
-Cameron Family
Your
Organs... Your Choice
By Allison Brown
Increasing the number of potential donors should be the goal of any organ
procurement organization. But what can be done to make a significant difference
in upping the number of donors and saving the lives of those waiting for transplant?
Presumed consent, a proposed answer to this question, has been making its
way into North American media and government debate, as we try to ensure that
every potential organ for transplant is recovered.
Presumed Consent is a system that assumes everyone wants to be an organ and
tissue donor, unless they register to opt out. Currently, varying models of
presumed consent are theoretically in practice in France, Austria, Belgium,
Denmark, Finland, Italy, Norway, Spain and Sweden. We often hear of Spain
as the ‘model’ country for organ procurement largely because they
have a high donor per million population rate, and on paper they appear to
outperform other countries in the number of transplants performed. Along with
presuming all citizens are donors, the Spanish system is set up with trained
transplant coordinators in every hospital able to handle organ procurement.
Since the teams of coordinators have been readily available in hospitals they
have had a direct impact in increasing the rates of donation, which have gone
from; “14.3 per million population (p.m.p.) in 1989 to 21.7 donors p.m.p.
in 1992” 1.
With statistics
like these showing how effective Spain has been with organ donation why doesn’t
Canada or BC push for presumed consent legislation? Firstly, we need to look
at the reasons why Spain’s numbers are always substantially higher than
Canada’s. It turns out that there is a difference in how we record our
donor numbers; in Canada, a donor is someone who consents to donation and
at least one organ is retrieved and transplanted. Whereas, in Spain a donor
is counted, even if there is just consent and no organs are transplanted.
Even with that, Spain still has more deathsleading to donation. Differing
mortality patterns go a long way to explaining this discrepancy.
Mortality patterns among countries is largely determined by the laws that
are present, lifestyle, and culture. According to statistics from the Urban
Futures Institute, we know that road deaths are higher in Spain, 143 per million
population, compared to 101 per million in Canada. The difference between
road cycle deaths (bicycles, motorcycles, and scooters) is even greater, with
6 per million population in Canada, and 26 per million in Spain. And in Canada,
89% of Canadians buckle-up compared to only 42% of Spaniards. Not only do
we have fewer road accidents resulting in death, but more of our population
chooses to wear a seat belt, which minimizes the chances of serious injury
in a motor-vehicle accident. Canada’s donor rates remain relatively predictable,
largely because of our smaller population and lower rates of traumatic accidents.
The differences in mortality patterns and statistics have not proved enough
to convince some who are certain we must move to a system of presumed consent.
So, let us look beyond the statistics. In theory Spain’s presumed consent
gives doctors the ability to go ahead with retrieving organs from a potential
donor as long as the individual has not opted out, yet in practice, the trained
transplant coordinators still obtain consent from the patient’s next
of kin. This in turn defeats the purpose of passing presumed consent legislation,
since one’s family still controls the final decision. The teams of coordinators
who are stationed in the hospitals practice “active detection” -
meaning they visit emergency rooms and ICUs on a daily basis, checking the
patients and their status2. More than presumed
consent, active detection plays a greater role in increasing donor numbers.
Maintaining the public’s trust with an already misunderstood topic is tough, and it is believed that presumed consent could cause backlash if the medical system has the power to determine what happens to all of our organs after death.
Sweden moved to presumed consent, experiencing an overwhelming negative public response, as many more than expected chose to opt out. In September Ontario’s Trillium Gift of Life Network rejected the idea of presumed consent as they move in a direction like BC, that will require all deaths in Ontario be referred to their organization. BC has built a system of organ donation and consent around the rights of the individual, giving everyone the opportunity to register their decision, even the choice to register no. Operating with BC’s Organ Donor Registry is Universal Referral, legislation which requires all deaths of people 75 years and younger to be referred to BC Transplant for potential donation.
Rather than hastily turning the cheek to an opportunity that could save many lives, BC Transplant looks to the future, promoting organ donation and the Registry, ensuring that your body remains your own even after death, and that your decision on organ donation is recorded and upheld.
Better
Biomarkers in Transplantation
Transplantation remains the main therapy for patients with end-stage vital organ failure. One of the major problems facing clinical caregivers after transplant is determining whether a transplanted organ is undergoing rejection. Current methods for detecting rejection require the use of highly invasive and risky procedures, such as tissue biopsies, which are relatively intensive and reveal non-specific indicators of organ injury. Such expensive procedures cause both emotional and physical discomfort to the patient and may result in findings that are inconclusive.
The overall goal of the Better Biomarkers study is to establish effective, minimally invasive blood and urine markers that reliably predict rejection of heart, liver, and kidney transplants. It is hoped that this study will eliminate the need for future patients to have a biopsy as a way of monitoring rejection, replacing it instead with a simple blood or urine test. The study will compare kidney, heart and liver transplants to examine the different mechanisms of rejection and tolerance seen with these organs. The tests will guide the monitoring and prescription of immunosuppression, and will enable physicians to select and adjust treatment to reduce graft rejection and drug toxicity.
There are currently 69 patients enrolled at Vancouver Hospital and 68 enrolled at St. Paul’s. Patients will be contacted by the BCTS Clinical Research Coordinator at the time the patient is put on the waiting list, at the time of transplantation, or on a visit to the transplant clinic. Patient consent will be performed by the Clinical Trials Coordinators at the BCTS. Sue Harding at the Vancouver General Hospital and Karen Gibbs at St. Paul’s Hospital are the primary study coordinators.
St. Paul’s
patient and staff response has been overwhelmingly positive. Karen Gibbs says
“It is wonderful to be apart of such an exciting project.” She notes
that the study involves so many departments that in almost any area of the
hospital there is someone who is participating as a subject in the study or
helping to collect the study specimens. Patient response to the study
at Vancouver Hospital has also proved to be excellent. “Many patients
feel their participation will make a big difference in years to come for future
transplant patients and that is why they are willing to participate, Sue Harding
says.”
back
to top
Three years and ‘The Replacements’ are still running. Every spring for the past three years a team of 10 runners has gathered together and raced a combined course of 120 kilometers in the Vancouver Island Relay to help raise awareness for organ donation. The 10-stage run begins in Courtenay and winds all the way down the Island highway to finish in Nanaimo.
“The Replacements”
are all runners with a connection to transplant, out to race, cheer, and support
team members, at an event that always proves to be a great time.
Lace up those sneakers and start training because the 2006 relay is set for
May 27th and we are always looking for new runners who are motivated by a
good time and a good cause. There is a route for any level of runner, team
captain Ken Donohue says “If I can do it, anyone can!” The main
goal is to get out with a fun group and promote organ and tissue donation,
and of course run!
Race organizers have been a great support over the last three years, partnering with BCTS to help promote organ and tissue donation among race participants and the community. Relay supporters are out to encourage more people to register on BC’s Organ Donor Registry. Although great thanks has to be given to the “Wannabees”from the Chemainus sawmill who have donated $1000 two years in a row to BCTS.
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