A
new kidney gives more energy to an already bright star
by Ken Donohue
It’s been said that good things come in small packages. If that’s the case, then 20-year-old Stacey Wieler is a shining example of that old adage. She has a rare disease called Russel Silver Syndrome, which resulted in stunted growth from birth. But as Wieler sits on her hospital bed, recovering from a kidney transplant, she exudes an infectious spirit and determination that belies the health problems she has faced throughout her young life. Wieler has endured kidney problems since she was an infant. At the age of two, she had her right kidney removed, and despite the growth of cysts on the other kidney, it continued working until she was six. At that time, Wieler went on peritoneal dialysis, but an infection forced her onto hemodialysis, and by the time she was in grade eight, she had to consider the idea of a kidney transplant.
“I was scared at first,” says Wieler, “but then I realized that a transplant would give me more freedom, and I would feel better.” But getting a new kidney would be even more difficult than it is for most people. In September of 2001, she got the call she was hoping for, but the transplanted kidney failed right away. “It was just awful,” she remembers. “I was really upset and depressed¾I figured I would have to wait about three to five years for another.”
Fortunately for Wieler, the second chance came in December 2002. The frustration that she felt when the first kidney failed was replaced by an array of emotions¾she was excited and nervous, but she knew this one would work. And work it has. Wieler has even named her kidney “George” after her favourite dialysis nurse in Kelowna. She was excited about returning to her classes at Okanagan University College, in Kelowna, where she studies English and Math.
The transplant has been incredibly positive on her life. Her family describes it as a complete turn around. Wieler would like to eventually work in the food services industry, but for now she is enjoying life with her new kidney. She had this to say when I spoke with her again six months after tbe transplant. “I have a lot more energy now and I go out a lot—shopping, dancing, and bowling. I’m happier and I’m always smiling.”
Fight
the germs
by Cathy Khotsambath
Nowadays, people do not have to watch horror movies to be scared, all
we need to do is turn on the six o’clock news or pick up a newspaper.
The media has been inundating us with stories about killer diseases running
rampant with no signs of a cure in sight, in particular the West Nile
Virus (WNV) and Severe Acute Respiratory Syndrome (SARS). The latter,
for example, is causing such a panic that on April 23rd the World Health
Organization (WHO) invoked a travel advisory to avoid non-essential travel
to Toronto, only to have it lifted on April 30th . While the public may
fear these two diseases, unless one has recently traveled to a heavily
infected area, been in close contact with someone who has recently traveled
to these regions, or been in close contact with someone who is infected,
they are at a low risk for contracting SARS.
The public is also at a very low risk for contracting the WNV, which is transmitted by infected mosquitoes. This virus appears even more threatening due to continuous broadcasts that WNV tends to affect the elderly and those with compromised immune systems more severely than healthy individuals. “WNV is not an issue for transplant recipients. We are now testing for WNV for donors and from a recipient perspective it is another risk associated with a transplant - but one that is so insignificant compared to the alternative that recipients should not be concerned,” says Sally Greenwood, Director of Communications with the British Columbia Transplant Society (BCTS).
People, instead, should be more concerned with preventing the common cold and influenza. Greenwood noted that there are hundreds of deaths due to influenza and typical pneumonia in BC each year. Yet SARS, for example, has only claimed 35 lives throughout Canada. According to Greenwood, the best defense against the common cold, influenza and SARS (or any other viruses) is to practice good hygiene.
If you want to learn more about these communicable diseases and their preventative measures, please contact your doctor or visit the BC Centre for Disease Control’s website at www.bccdc.org It must be emphasized that there is no concrete evidence that immuno-compromised patients are at a greater risk of contracting SARS or any other viruses when compared to that of others in the population. People, instead, must be aware that by following basic hygiene principles they can help minimize the spread of communicable diseases.
Living
Anonymous Donation...where we're at
by Antonia J.Z. Henderson, PhD
Motivated by the critical shortage of organs available for transplantation, the BC Transplant Society began conducting a study, in 1999, that examined individuals who would consider donating a kidney, anonymously, while alive, to a stranger—what we have called Living Anonymous Donors or LADs. Earlier this year, a phase of the study was published in the American Journal of Transplantation (Henderson et al.,2003).
Some people have asked why it was necessary to do such a lengthy study to explore living anonymous donation, suggesting that if someone wants to donate a kidney to whomever they want (including a stranger) they should be allowed to do so, provided they are medically fit. However, doctors live by a bioethical norm “to do no harm,” and in any living donation, where a healthy donor is potentially compromised for the health of another, this ethical question comes to the forefront. In the case of a father donating to his child, however, a doctor can feel confident that the benefit to the donor will outweigh any possible risk he may undergo. The case is not so clear when a person wants to donate to a stranger. Therefore, our study was designed to create a psychological portrait of the LAD to inform policy development and help determine whether we should consider conducting this procedure at BCTS.
The third phase of this project assessed the psychological health, psycho-social suitability, commitment, and motivations for donation of unsolicited individuals. This sample was comprised solely of people who contacted BCTS on their own accord, indicating a desire to donate a kidney while alive to a stranger.
We found that almost half of our 43 participants passed the stringent criteria to be considered potential-LADs. Furthermore, when we looked at donor motivations we saw a psychological portrait of potential-LADs as extraordinary humanitarians – highly altruistic, and spiritually driven.
Encouraged by our results, we have pulled together a team of doctors, nurses, psychologists, ethicists, and other transplant professionals to develop a LAD policy. We are currently working on a paper describing the policy development process, the questions we faced and the solutions we arrived at. The paper illustrates how research has informed our process and forms the basis of our solutions to key ethical issues.
Based on our research we feel sufficiently convinced that there are sane, and altruistically motivated potential anonymous donors out there such that we are ready to proceed with living anonymous donation at BCTS in the context of a clinical pilot. The objective of the Clinical Pilot Study will be to show that LAD kidney transplantation is a safe and feasible strategy to increase the supply of organs for transplantation. To describe the safety of a LAD programme, we will compare the medical, functional, and psychological outcomes of a group of 10 LADs with a matched control group of 10 living related donors (LRDs). To describe the feasibility of a LAD programme we will compare the resources utilized to identify these 10 LADs with the LRD comparison group. We hope to be starting the project this fall.
This pilot study will provide much needed information regarding live anonymous donation that will be of particular value to other Canadian centres considering a LAD initiative and may ultimately result in widespread acceptance of this approach.
It has indeed been a humbling and inspiring experience to lead this project and have the opportunity to meet so many truly remarkable people, who are prepared to give so generously and so selflessly.
Rethinking the reasons we don't donate
by Ken Donohue
I donated blood for the first time about five years ago. I was 28 years old, and I hadn’t donated before for reasons that are all too familiar to the Canadian Blood Services (CBS). I convinced myself that I was afraid of having a needle poked in me, and to be honest, I never recognized or appreciated the need. In hindsight, I am actually ashamed of myself for not donating blood sooner. So, what made me put aside my fears and donate the first time? My wife needed a kidney transplant, and I said to myself that if I wanted someone to give her a new kidney, then I had better be willing to give something back, so I decided to donate blood. I am now a regular donor, but I recently learned that I am in the minority. Only 3.5% of eligible Canadians donate blood [CBS deems someone to be eligible who is between the ages of 17 and 70]. The number in British Columbia is even less, as only 43,000, or 1.8% of British Columbians are regular blood donors, meaning they donate at least once every 18 months.
You may, or you may not be surprised to know that the top three reasons Canadians don’t donate are: apathy¾not interested, don’t have time, fear of needles¾fear of the unknown. Ina Hunt, Communications Specialist with the Canadian Blood Services, in Vancouver, recognizes the challenge in getting more British Columbians to become blood donors. “Education and making it a routine are the key to helping overcome the problem,” says Hunt. “We can do that through the media, our speaker’s bureau program, and articles in different publications.”
Did you know that British Columbia is a net importer of blood products? That means there aren’t enough donors in the province to meet the demand. Part of this is because of the many specialized surgeries and trauma centers in British Columbia, but that shouldn’t diminish the importance that more British Columbians need to donate blood. Canada, as a whole, tends to be less generous when it comes to blood donation, when compared to other countries. In the United Kingdom, Australia, and the United States, about five to six percent of their respective populations are regular blood donors. “There is no reason why we shouldn’t be at that number,” says Hunt. If the situation is critical now, it will only get worse. By 2005, the CBS estimates that one million donations will be necessary in Canada. “Our population is getting older, and are requiring medical procedures, such as, cancer treatment, organ transplants, and hip replacements, which are blood intensive.
The CBS is banking on its Life Link program to increase donations. The BC Transplant Society is a new participant in the program that challenges organizations throughout the province to do more, by encouraging its employees to regularly donate blood.
The BC Transplant Society has also recently partnered with the Canadian Blood Services to cross-promote. There was recognition that both organizations share similar challenges in encouraging people to donate blood and to register to become an organ donor. To this end, BC Transplant Society volunteers have set up informational displays at a number of blood donor clinics throughout the Lower Mainland. Likewise, the BC Transplant Society is committed to helping the CBS increase blood donations. In fact, blood donation plays a critical part in most transplant surgeries. Blood products are either used or on standby for every transplant, except kidney transplants.
Apart from getting more donors, the other significant challenge is responding to potential threats to the blood supply, such as the West Nile Virus. A blood-screening test to detect the virus is expected to be ready in July. In the meantime, the Canadian Blood Services is launching a national appeal to build up a reserve of red blood cells during a time of low risk for the West Nile Virus.
When faced with national or international crises, Canadians seem to respond positively to appeals for blood donation. After the September 2001 terrorist attacks, more than 4,500 new donors donated blood in a three-week, but only a small percentage came back. “I wish people new that little crises happen all the time, and the need for people to donate never diminishes,” says Hunt, “just because it isn’t in the news everyday, doesn’t mean we don’t need blood.”
It’s time to “roll up your sleeves!” So, put whatever fears you have aside, find some time in your life and become a regular blood donor. You never know when you, a friend, or a family member might need some blood, so call 1.888.2.DONATE to book an appointment. You can also visit www.bloodservices.ca for more information.
Rotary supports organ donation
by Ken Donohue
For years, Rotary clubs throughout the province have invited the BC Transplant Society to speak to their members, but three years ago, the relationship was expanded when Roger Perry, President of Vernon’s Tri-Lakes Rotary club contacted the Society. He was interested in getting his club involved in promoting organ donation, and over the past few years have organized several promotional events. A short while later, Peter McCaffrey, a member of the Creston Valley Rotary Club wanted to get involved, and at a recent conference, his group registered 125 people.
This momentum resulted in Warren Cunningham, a retired physician and Rotary member in Kelowna, getting on board. “I was asked by our District Governor to develop a program to reach the community and to encourage them to register on the Organ Donor Registry,” he says. Cunningham has been a quick study on the issues relating to organ donation and the BC Transplant Society, and since January he has spoken to a majority of the 58 clubs in his district. During National Organ and Tissue Donor Awareness Week, Jim Gural and members of Kamloops Rotary organized a registration drive at a local shopping centre and registered more than 200 people. Sometimes this issue hits closer to home than we think. Rick Acton, a long-time Rotary member with the Vancouver Arbutus Club recently received a lung transplant.
The BC Transplant Society is glad to have Rotary as a partner as we continue to educate more people about organ donation and transplantation.
BC studies non heart-beating donation
Ed Ferre, a BC Transplant Society Retrieval Coordinator, spent two weeks with the Gift of Life Donor Program in Philadelphia, studying and observing the non heart-beating donor process. The majority of the time was spent meeting and discussing the process with the specialists involved; however, Ed was fortunate to be a part of a non heart-beating donation from beginning to end.
Before the legal and clinical definition of brain death was developed in 1968, all organs came from donors who died of a cardiac death. Today, with global consensus on the definition of brain death, all organ donors are maintained on ventilators until the actual procurement. Because of the shortage of organs, and the need to identify all potential sources of organs, an interest in non heart-beating donation has been rekindled, and in several countries organs are routinely procured from these donors. Along with providing a source of organs, the families of these donors come away feeling that something positive has come out of a tragedy, and healthcare professionals are able to offer the option of donation.
Non heart-beating donors sustain devastating neurological injury that is incompatible with life; however they do not fulfill the criteria for brain death. Once the decision to withdraw support has been made, the option of organ donation may be presented to the patient’s family. If the donor meets the criteria, kidneys, liver, and pancreas may be procured.
Non heart-beating
donation is not practiced in Canada; however, the BC Transplant Society believes
that non heart-beating donation is a form of donation that needs to be pursued,
and is working towards establishing a program of this type.
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New
transplant procedure is promising for diabetics
In a collaborative effort between a number of agencies, the first islet
cell transplant has been successfully completed in BC. An alternative
to whole pancreas transplant, the procedure—until now only available
in Alberta—involves transplanting healthy insulin-producing cells
into a patient with Type 1 diabetes. BC’s first patient, 47-year-old
Heather-Ann Vaincourt, received the islet cells in March and has been
living insulin-free for three months.
Dr. Mark Meloche, Head, Section of Surgery at the BC Transplant Society,
and Co-director of the Islet Cell Transplant Program, performed the
transplant, using a technique created by Co-Director Dr. Garth Warnock,
who performed Canada’s first successful islet cell transplant in
Alberta in 1990.
Islet cells are isolated from pancreata obtained through cadaveric donors,
and while this is a very exciting medical treatment, it will only be available
to a limited number of patients, due to the small number of cadaveric
donors available in BC.
Islet cell
transplantation does not require surgery, and may be performed as a one-day
outpatient procedure. Most recipients will require two infusions of cells.
Irving K. Barber, a leading BC entrepreneur, created the Human Islet Cell Transplant
Laboratory, site of the Islet Cell Transplant Program, through a
$2.5 million gift. The BC Transplant Society will be responsible for pre-transplant
assessment, post-transplant follow-up and all costs associated with the
infusions and anti-rejection medications through funding from the Provincial
Health Services Authority.
While whole pancreata are typically suitable from young and fit donors, pancreatic islet cells are often more easily procured for older, overweight donors. Therefore, this new treatment allows us to use pancreata that would previously not have been considered suitable for transplant.
For more information, please visit
www.surgery.ubc.ca/isletlab/program.html
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Full
of heart...recipients give back
by Ken Donohue
Home is where the heart is, and for many heart transplant recipients that means spending months in Vancouver following transplant. Not a big problem for those already living in the Lower Mainland, but for those needing to relocate, it can be challenging and costly.
Thanks to a group of heart recipients, finding a place to stay after receiving a heart transplant has been made easier. The idea of a Heart Home was born after a meeting of the heart transplant support group. Ron Bayne, President of the Heart Home Society, and a heart transplant recipient himself commented how the group really wanted to start doing more. After the meeting, Bayne spoke with Peter Quinn [a fellow heart recipient], who suggested the idea of a heart home. “The idea had been talked about previously, but no one acted upon it,” says Quinn. “But there was a definite need.” He shared a story of how someone waiting for a transplant was forced to cancel some tests, because they couldn’t afford the high-cost of a hotel in Vancouver.
After registering as a non-profit society, the first task was to start raising money. Initially, a few hundred dollars came in, but the group soon realized that much more would be needed if they wanted a set of keys to a home. The Gillette company provided money for collection tins that have been distributed to a number of retails outlets. In fact, if you visit any London Drugs in August, you will be able to put your spare change [or bills] to a good cause.
Once the tins were arranged, they put their sights on another lucrative project. “We wanted to get some art work from acclaimed, local artist, Daniel Izzard [also a heart recipient],” said Bayne. “He promised a $1000 print, and then we started contacting other artists, and before we knew it, we had a $90,000 collection of art.” A subsequent art auction raised $22,000 for the Society, and provided the financial boost needed to open the first home. “It is really amazing,” enthuses Bayne. “Within nine months of presenting the idea, we opened the first home.”
The homes are available through the Mole Hill Community Housing Society, which was established to preserve a neighbourhood of heritage homes and to provide for social housing. The City of Vancouver owns about 80 homes in the area and leases them to the housing society. After opening the first home, Bayne mentioned to a representative of the Society that the only place better would be a home on Thurlow Street. One was available and is currently being renovated and will be ready by the end of the summer. This second home, measuring 800 square feet, will be open to heart transplant or VAD [Vascular Assist Device] patients. The other, smaller apartment, will be used as a back up, or if vacant, by someone requiring by-pass surgery.
The cost for people using the home will be $30 per day or a maximum of $750 per month. “It isn’t a problem if someone could not afford the rental fee,” says Bayne. “We don’t want people to worry about their finances…we want them to take care of their health.” Patients will apply to use the homes through their social worker. Bayne notes that the main home is so close to St. Paul’s Hospital that if it were any closer, it would be in the hospital’s emergency department.
After raising $25,000 in just nine months, the Heart Home Society says it will need about $10,000 per year to maintain the two homes. Bayne says the biggest challenge has been finding volunteers for their fundraising efforts. But he and Peter Quinn are delighted with the progress so far. “There is a great sense of satisfaction,” says Quinn. “We only wish we could do more.”
If you would like to make a donation to this worthwhile endeavor, or you would like to help with their fundraising activities, please contact:
Ron Bayne
604.272.7730
Peter Quinn
604.244.2390
peter_quinn@telus.net
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