Safer
Society. Fewer Organs
Canada is often criticized for its low organ donation rate, with the suggestion
being that Canadians are less giving or altruistic than other nationalities
with higher rates of donation. Recent statistics from the Urban Features Institute
show a much different picture. There is a connection between the donation
rate in BC and our changing mortality rates. The reality, there are fewer
donors in BC because fewer people are dying in circumstances that can lead
to organ donation.
The statistics show that the number of in-hospital deaths of people age 0 to 69 from motor vehicle accidents (MVA) and cerebral cardiovascular diseases (CVA) such as strokes has steadily decreased over the past decade. These are the most common causes of death associated with potential organ donation. This decline can be attributed to positive factors in our society that are good news for most — improved safety measures such as helmet laws and airbags, along with advancements in medical care.
When we look at the statistics this declining trend is clear, the change in
potential organ donation related deaths was 325 in 2004, half the number compared
to 635 in 1990. “This trend has forced us to develop additional strategies
to meet the needs of our patients, such as living donation,” says Bill
Barrable, BCTS Provincial Executive Director. BC Transplant Society has long
been a leader in Canada with respect to living donation and this focus will
continue with new initiatives such as Living Anonymous Donation and Paired
Kidney Exchange.
Building
Community Awareness
by Allison Brown
Giving the gift of life, and understanding the great impact of this gift on
transplant recipients is a key message in Mina Singh’s work. Mina recently
joined the BC Transplant Society as a Community Outreach Coordinator to focus
on opportunities to further educate the South Asian community on the benefits
of organ donation and transplantation. Mina is working to make organ donation
an inclusive health issue in BC that is better understood, accepted, and accessible
for all communities.
Broaching the topic of organ and tissue donation with the public carries with it many obstacles, specifically common myths and misconceptions, which must be dispelled before a positive message will be absorbed by a community. Mina’s vision is clear, spreading awareness and talking of the benefits that organ donation offers can change a community’s outlook on the issue. When talking about her experience in educating members of the community Mina says, “I notice a glitter in their eyes when they find out about this (organ donation facts)”. Simple facts such as survival rates of recipients have proven to change ones perspective of this often misunderstood health issue. The reality is that survival rates for recipients are promising with over 90% of kidney patients with well functioning transplants at the five year mark — recipients are living proof that organ donation works and they have the ability to deliver a powerful message to their community.
Mina is looking to South Asian recipients and live donors for help, as she believes in their strength to showcase how they are living full lives after a transplant. Volunteers from the South Asian community who have had an experience with organ donation can bring forth a positive message and provide hope and understanding for those waiting. “The mind is really powerful. We have to bring in positive hopes,” says Mina. When recipients and live donors from the community become involved in the education process the community will be better informed and connected to the reality of the health issue. This has motivated Mina to begin approaching South Asians connected to transplant and encourage them to engage community members in the topic of organ donation. There are many opportunities to volunteer at health fairs and speak to organized groups in the community.
If you are interested in speaking to Mina about your experience with transplant and the ways in which you can get involved please contact her at 604-877-2240
Robots,
Dye, Cellular Analysis - Innovation
by Allison Brown
Researchers, Doctors Clay Smith and Ryan Brinkman are involved in developing a system using high throughput flow cytometry that could potentially detect the smallest signs of initial rejection or graft vs. host disease in bone marrow and organ transplant recipients. This system could have a significant influence on the future treatment of transplant patients.
Their research is focused on developing a system that will detect very early signs of graft vs. host disease, that afflicts some bone marrow recipients. Graft vs. host disease is a complication that can arise after a bone marrow transplant, where the newly transplanted bone marrow and immune system is rejecting/attacking the recipient’s body. In organ transplant, the exact opposite effect can happen in terms of rejection, where it is the body that rejects the transplanted organ.
Both rejection and graft vs. host disease can have detrimental effects on the success and health of a transplanted patient, and that is why Smith and Brinkman are researching a system of high throughput flow cytometry. The source of rejection and graft vs. host disease is in the patients white blood cells, and it could be very specific groups of white blood cells causing the problems — this technology attempts to sort through all of the patients white blood cells to find the troublemakers. This system combines robotics (robots) and bio-informatics (highly complex computer analysis software). The robots examine thousands of white blood cell populations from a sample of transplant recipient’s blood in a very short period of time. Many colours of dye are used to stain the white blood cells. When the cells react to a particular dye the researchers can better understand the cells properties and if that type of cell is acting out of the ordinary and involved in rejection.
White bloods cells can be looked at like a large family — they have thousands of sub-groups or populations in their family who carry differing characteristics. A major difficulty in identifying rejection is sorting through these thousands of white blood cell ‘sub-groups’ to determine which group or groups is acting out and causing rejection.
“Imagine the difference in looking at the stars with binoculars compared to looking at the stars with the Hubble telescope,” says Dr. Smith, this is the same type of advancement in comparing previous cell research technology to high throughput flow cytometry. Before this technology was developed, researchers were able to view a few dozen white blood cell populations in a day. Now they can view thousands and the computer system is able to handle the large amount of data and analyze it.
For organ transplant recipients this research holds the potential to one day eliminate the need to always take immunosuppressive drugs after transplant. The transplant recipient could potentially be followed by simple blood tests that would indicate any small changes in the blood leading to the discovery of which white blood cell populations are acting out. If those changes are related to rejection the patient will then take immunosuppressive drugs to help the body’s immune system accept the transplanted organ.
The BC Transplant
Foundation recently presented Dr. Clay Smith with a grant to help fund a portion
of this study. The funding will allow the researchers to increase the number
of dyes used in analyzing the cells.
Bright Lights Shine on Anti-Rejection
by Allison Brown
Doctors Raewyn Broady and Megan Levings were recently awarded a grant from the BC Transplant Foundation to help fund their research into the workings of photopheresis. The pair is looking to find an explanation as to why shining ultra-violet rays on specific cells has been shown to reduce or treat rejection in solid organ transplant patients.
Photopheresis is a form of treatment currently being used to improve the condition of patients with Cutaneous T-Cell Lymphoma, as well as patients suffering from Graft vs. Host Disease — both are cancer related health issues. Studies have also been conducted to research the effect this treatment has on rejection of transplant organs, specifically heart recipients. All of these medical conditions have one thing in common; the source of the problem lies within the patients’ white blood cells. The photopheresis treatment aims to target the specific source of the problem in rejection, rather than suppressing a patient’s entire immune system.
The treatment process involves a machine that takes the patient’s blood and spins it, separating it into three parts: plasma, red blood cells, and white blood cells. Both the plasma and the red blood cells return to the body immediately, while the white blood cells are collected in the machine. Once enough of the white blood cells are collected a nurse injects them with the drug, Methoxsalen, which is photo active (reacts to light). The white blood cells then move to an ultra-violet light chamber. Imagine your white blood cells going into a miniature tanning bed wearing a lotion that will enhance the tan when the lights turn on. The combination of the light and photo active drug essentially kills the cells and changes their properties. When the white blood cells have finished their session with the UV lights and photo active drug they are then returned to the patient’s blood stream.
It is believed that the treated white blood cells will stop attacking and teach the others not to attack a transplanted organ. This process has been shown to treat graft vs. host disease in bone marrow transplant patients and to reduce or treat rejection in cardiac transplant patients.
The basis of Broady and Levings’ research is to find out if the treatment of photopheresis is suppressing or stopping T-Cells that are destroying a transplanted graft (organ) and if it instructs a patient’s T-Cells not to destroy the graft in the future. Although this technology is currently being used to successfully treat patients with lymphoma and graft vs. host disease, its effects and reasons for success are largely unknown. The grant from the BC Transplant Foundation will help Broady and Levings experiment in a lab setting to better understand why and how this treatment is working to treat solid organ rejection.
Currently, the conventional form of treatment for transplant patients suffering from rejection is immunosuppressive drugs, which are known to leave the patients vulnerable to added complications. “This treatment could have a steroid sparing effect,” says Dr. Broady. Steroid sparing will allow patients who suffer from rejection to reduce the amount of immunosuppressive drugs taken. There is hope that this treatment will be a safe and well tolerated approach in treating organ transplant patients who are suffering from rejection, or those who are heavily immunosuppressed.
How does one decide to give up two thirds of their liver to another person with hope this gift will save their life? After speaking with Cliff Ursel, who donated a portion of his liver nine months ago to save his mother in-law’s life — it’s what you have to do.
Cliff’s mother-in-law Barb was diagnosed with liver disease many years ago. As her liver slowly deteriorated and the condition worsened she was activated with BC Transplant to wait for a liver transplant from a deceased donor.
Understanding the gravity of the situation and chances of getting a liver from a deceased donor, members of Barb’s immediate family were tested as potential matches for live donation. In BC alone over 24 people are currently waiting for a new liver. The average wait time for these patients is five months and some will not survive the wait. Preliminary testing on family members revealed that Erin, Barb’s daughter, was a match.
Erin brought home news of the testing, match, and possibility of being a live donor for her mother, which motivated her husband Cliff to be tested as well. When Cliff realized he was an initial blood match he chose to move forward with the extensive evaluation to be Barb’s donor. It was important for Cliff that he, not Erin be the donor. His hope was to protect his wife from the added emotional and physical stress of surgery, which would inevitably compound on the stress already felt in supporting her mother in a struggle for life.
When it was clear
that Cliff was a positive match and going forward with assessments, the decision
was final. Together as a family, Cliff, Erin, and their two children informed
Barb that they were going to do this. “It was a gift from my family to
theirs,” says Cliff. When it came to the decision to donate Cliff had
no doubt, but a lot of fear.
Cliff is not one to seek out a trip to the doctor, in fact he has tried to
avoid doctors and medical tests altogether, but his fear didn’t stand
in the way of following through with the vigorous medical testing involved
in the work-up to be a live liver donor.
For many reasons
living liver donation is not a decision to be made lightly. The surgery is
risky and there is a chance that complications can arise. At BC Transplant
few live liver transplants take place every year, as the surgery and possible
complications can be overwhelming for many potential donors. “I knew
it was nasty and learnt what I was in for,” says Cliff. All of the ‘would
if’s’ were considered, but his desire to donate for the sake of
his wife and mother-in-law was stronger than the fear and risks involved.
The family had to be comfortable with the chance that Barb’s body could
reject Cliff’s liver, or that she might not survive despite receiving
a healthy liver.
During the whole experience plan A was always to wait for a deceased donor
— as Cliff explains this plan was solely based on chance and luck, and
they needed to have options. Plan B was to have a live donor worked up and
ready in the event that Barb’s health worsened. Due to a shortage of
organs, patients on the transplant waitlist are often ill and facing death
before they top the waiting list and receive a new organ. If a patient is
transplanted before they reach such a critical stage they have a better chance
at survival.
Barb’s health deteriorated. Ambulance rides and hospital stays became
frequent. To give her a chance at survival plan B quickly moved forward. Emotions
reached a pinnacle the day before the surgery, but even at that moment Cliff
thought, “I wouldn’t change a thing.”
Immediately after surgery Barb appeared healthier and although Cliff was missing a portion of his liver it was time to bounce back and rebuild strength. Cliff’s recovery began with his first walk in hospital. Shocked at the time that a patient fresh out of major surgery and attached to so many tubes and machines was expected to get up and walk, he was told — you’ve had surgery but you’re not sick. Those simple words continue to inspire Cliff as he builds back his physical health and thinks back to his decision to donate. The words help reinforce his belief that a potential donor is a person in a position of wealth and they have something very valuable to offer.
Now, nine months post-op, Cliff believes that the gift he gave and risks faced in doing so only reinforced his beliefs in family and love and he feels great to have been given the opportunity to play a role. When asked to sum up how he feels about the experience Cliff says, “It was an honor to be able to serve my family that way, far more than one person benefited from this.”
As a live donor Cliff wants others facing a similar situation to know that it’s ok to be scared because fear is simply an emotion that can be overcome. As a donor you’re not sick, you have surgery, but you’re not the sick person.
Transplant Recipients and Exercise
Most believe exercise is important for good health. Experts say it is good for your physical well being and essential for one’s mental health. In talking to some transplant recipients, it is apparent that exercise can still play an integral part in their lives. Many of us were athletic before transplant. We reduced our exercise regime as our health failed, but maintained some level of activity.
While waiting for a transplant it was imperative to stay active to keep physically and mentally strong. We promised ourselves we would return to our favourite activities once able. While lying in ICU, there were dreams of gardening, swimming, running, and canoeing once again. Some even dreamt of competing in the World Transplant Games.
Before returning to exercise we checked with our transplant physicians to ensure the timing was right. One must not over-do it. Take baby steps. Start slowly and work up to more strenuous activities if you can.
Why do we exercise and stay active? Overall, our reasons are similar. Maintaining an active lifestyle keeps our body and new organs healthy; this helps to reduce stress and uplifts us emotionally.Simply put, exercise feels good.
Most importantly,
all of us agreed we exercise to honour our donors and donor families. We want
to prove that organ donation works and without their extraordinary gift we
would not be able to fulfill our dreams.
Written in Collaboration with a number of transplant recipients enjoying life
and fitness!
National
Organ and Tissue Donor Awareness Week 2006
On Thursday April 27th Victoria volunteers were out in the early hours of
the morning to help with the 3rd Drive thru for Life Breakfast. Sponsored
by Thrifty Foods and 100.3 The Q!, the drive thru breakfast is aimed at promoting
National Organ and Tissue Donor Awareness Week in Victoria. With 100.3 the
Q! broadcasting their morning show live from the event, it was a great opportunity
for local recipients to share their stories with the public.
Volunteers were eager to register as many Victorians as possible during the
morning event; in the end over 90 people diverged from their morning commute
to register as organ donors! Breakfast was kindly donated by Thrifty Foods,
giving all event participants a good start to the morning as a thank you for
driving thru and registering.
Thank you to the following local businesses who kindly donated prizes:
Hotel Grand Pacific
National Geographic IMAX
Cactus Club
Royal BC Museum
Garden Works
Butchart Gardens
Cordova Bay Golf Course
The Home Depot
Seafun Safaris
Mayfair Shopping Centre
Sierra Systems
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Volunteer
Recognition Evening 2006
The volunteer recognition evening is an annual event held by the BC Transplant Society to recognize the hard work of all our volunteers over the course of a year. BCTS volunteers play a significant role in educating British Columbians about organ and tissue donation and encouraging people to register their decision on the organ donor registry.
BCTS wants to ensure that their hard work doesn’t go unnoticed! On behalf of the organization we would like to thank all of the volunteers for the great work they do. Each year, some volunteers are recognized for exemplary achievement, the following is a list of 2005 award winners.Congratulations!
Carol Balderston - Rookie of the Year Award
Reg Anderson
- 911 Rescue Award
Robin Tomlin - Initiative Award
Russel White, QB Print and Media Solutions & Mark Warner, Publisher, Vernon
Morning Star - Corporate Citizen Award
Margaret Benson - Commitment to Youth Award
Steve Middleton (Vancouver Is. Relay) & UBC AMS Organ Donation Club - Community Group Award
The Dosanjh family - Mosaic Award (ethnic awareness)
The Palmer family Long-Time Achievement Award
Thank you to
the following sponsors for supporting organ donation and donating prizes:
Banana Leaf, The Fish House, Burnaby Village Museum, Electronic Arts, Milestones,
Peninsula Cycles, Purdy’s Chocolates, Sammy J. Peppers, The Sutton Place
Hotel, UBC Bookstore, Westwood Plateau.
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