Organ donor registry in Ontario, Canada choked by red tape

Every U.S. state has an online organ donor registry (or has approved it's activation) but the only Canadian province to have one is British Columbia. I've been advocating for an on-line registry in Ontario for several years now only to be met with frustration and excuses such as it would cost too much or privacy issues had to be overcome before a registry could be implemented. I've told the powers that be that young people are not going to go on-line, download a form, print it out, complete the form and mail it in via snail mail. I pointed out they were missing a wonderful opportunity with young people with the Recycleme.org program by not offering a chance to register to be an organ donor on-line. All to no avail. I'm glad the Toronto Star has brought attention to the situation. Let's hope that someday soon Ontario will do something positive to increase the rate of organ donation in this electronic age.

By Barbara Turnbull, Living Reporter The Toronto Star

Linda Hogarth believes it is her duty to register as an organ and tissue donor. It’s certainly fortunate the 70-year-old former saleswoman is committed, because not everyone would have had the time and patience to endure the hassle she experienced.

Her odyssey began when she visited www.giftoflife.on.ca, the website of Trillium Gift Of Life, the agency that coordinates organ and tissue transplants in Ontario. Hogarth printed out the donor form, filled it out, signed it, and mailed it.

Then, she waited six months for a sticker to affix to her red-and-white health card. When none came, she contacted Trillium and was told there was a bottleneck processing forms in Kingston, where the donor registry is maintained.

“I know that the government moves slowly in all its branches, but this is nuts,” Hogarth told the Star.

Hogarth tried again to get a donor sticker, making several trips to Service Ontario offices, where she dealt with three employees before getting the sticker.

“I’m outraged by it,” Hogarth says. She is not alone. A year-long look into Ontario’s organ-and-tissue donation system shows that provincial red tape and jurisdictional overlap is impeding efforts to get Ontarians listed on the organ and tissue registry.

One major flaw in the system: Ontario’s old red-and-white health cards.

Hogarth is among almost 4 million Ontario residents — about 35 per cent of the population over 16 — who kept their red-and-white cards when the province introduced photo identification health cards in 1995, the same year a database was created to help match willing donors and the 1,500 children and adults awaiting transplants at any given time.

But all of these 4 million may never be asked for their consent to be organ donors — a fact reflected by the provice’s low sign-on rate.

Twenty-seven per cent of people with the photo health cards in Ontario (roughly 1.9 million of 7.2 million people over 16) have joined the organ and tissue donor registry. In contrast, just 0.4 per cent of red-and-white cardholders (15,000 of almost 4 million) are registered.

Experts say creating an online donor and tissue registry would reduce the time and effort required to join, but the province has declined to do so despite agreement from several government departments that a web registry is the way to go.

Consider the American experience. By the end of 2009, 37.1 per cent adult of U.S. residents were enrolled in state donor registries, all but three of them online. Nationally, Canada lags behind eight other countries.

“For a social democracy, it’s not a good track record,” says Dr. Gary Levy, head of the multi-organ transplant program at Toronto General Hospital. “It’s not the patients’ fault; it’s the system’s fault. There’s a logjam, there’s inertia.”

Levy is well-placed to make that judgment. He led the Organ and Tissue Transplantation Wait Times Expert Panel, which met in 2008 and 2009 and whose 26 recommendations have been examined by Ontario’s Auditor General Jim McCarter. Levy says he expects McCarter will embrace the panel’s recommendations when he makes his annual report today. The report is expected to address the old health cards and online registry issues, as well as wait times and the dearth of tissue donation from Ontarians.

The low sign-up rate is a multi-faceted problem Levy says, with some obvious fixes. For starters, “Get rid of the red and white cards immediately.” There is irony here: Levy himself hasn’t upgraded to the new photo health card, he admits, “And I’m the head of the transplant program.”

The approach to registration, Levy says, is another major impediment. Service Ontario staff are trained to renew driver’s licences and health cards. The organ and donor registry is not their primary mandate. “You’ve got the wrong people sitting behind the counter,” he says. “They haven’t been trained properly, they are no necessarily passionate about it, they may not understand what we are doing, there may be cultural issues.”

Last year, Trillium spent $600,000 on Recycle Me a campaign aimed at people ages 15 to 25 that involved 12 weeks of online banner ads, transit ads and a social-media drive. It has been judged a success by Trillium, generating 60 stories in various media, receiving 118,000 unique hits and 3,500 members on the Facebook page.

But Frank Markel, president of Trillium Gift of Life, doesn’t know how many of those 118,000 visitors registered to be organ donors. There was no way to register on the site — at the very moment Trillium held a potential donor’s attention.

“Trillium’s position for several years now, publicly, privately, with government, has been that we need an online registry,” Markel agrees. “The Ministry (of Health) agrees with us intellectually about that.”

He should talk to Penny Clarke-Richardson of B.C. Transplant. She says targeting a younger audience is what led her agency to establish an online registry nearly three years ago. Younger people, she says, just won’t print and mail forms. Since the online addition in June 2008, nearly 18 per cent (19,679) of new registrations in British Columbia have been made online, “and we have caught the demographic of the 19- to 40-year-old we were aiming for,” she says.

The systemic intertia Levy blames for the donor logjam stems in part from the fact that three groups have their fingers in the pie: two provincial ministries and the Trillium agency.

The Ministry of Health and Long-term Care takes the lead on organ donation and last summer put together a working group to plan and implement an online registry, an initiative that harks back to a recommendation in 2006 by the Citizens Panel to Increase Organ Donation. Meanwhile, the Ministry of Government Services is responsible for issuing health cards and drivers’ licenses.

Even Levy’s panel of experts found it difficult to determine where specific recommendations should be directed.

“In fairness to the public, we can make it more convenient,” Health Minister Deb Matthews told the Star.

Matthews suggested families get themselves and friends registered for Christmas this year. “Have a party and you can’t come in unless you’ve shown (proof of registration),” she suggests.

“I can’t imagine a better gift.”

HOW TO REGISTER

There are currently two ways to register as a donor in Ontario: Like Hogarth did, visit www.giftoflife.on.ca and download the form; or at a ServiceOntario office.

Each time a new health card is acquired or renewed at a ServiceOntario office, the employee is supposed to ask whether the client is aware that he or she can register there to be a donor and if they would like to give their consent. Though driver’s licenses are issued by the same employees at the same offices, organ donation is not raised at the time of renewal. A donor form, along with self-addressed postage-paid envelope, is mailed to people with their new driver’s license.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Canada needs national transplant registry

This article further highlights Canada's lack of a national organ donor registry and the lack of on-line donor registries in all Canadian provinces except for British Columbia. Most are still using driver's license consents and organ donor cards. Some, such as Ontario, no longer use donor cards but prospective donors must complete and mail in a registration form or go on line and download and print a registration form, complete it and mail it in. They can also register at government offices that issue health insurance cards. I've been advocating on-line registration in Ontario for years but to no avail because the message seems to be falling on deaf ears. Hopefully Canadian Blood Services will come up with a solution in a report due this fall under their new mandate to recommend a design for organ and tissue donation and transplantation in Canada.

By Robert Mangelsdorf Maple Ridge News

There’s little doubt in Dennis Teboekhurst’s mind what would have happened if his five-year-old daughter Grace had been unable to find a suitable kidney donor.

Grace suffers from nephrotic syndrome, a disease that damages the kidneys and weakens her body’s immune system.

She barely survived last year’s cold and flu season, spending much of it clinging to life at B.C. Children’s Hospital, hooked up to machines that fed her, breathed for her, and filtered her blood.

When Dennis, a member of the Maple Ridge Fire Department, found out in January he would be an appropriate donor for Grace, he couldn’t get his kidney out fast enough.

On Aug. 9, after months of testing, surgeons working at Vancouver General Hospital and B.C. Children’s Hospital successfully transplanted Dennis’s left kidney into Grace.

The kidney is so large that a fist-sized bump now protrudes from her abdomen.

“She’ll grow into it,” says Dennis. “She calls it her super kidney.”

Had Dennis not been a perfect match, Grace would have been put on the wait list for a deceased donor kidney.

“We’re very fortunate,” Dennis says. “But there’s a lot of other people out there who aren’t as lucky.”

More than 200 Canadians die every year waiting for an organ transplant.

Maple Ridge mother Lorraine Swift also nearly became a statistic.

A bout of pneumonia 25 years ago ravaged her lungs, nearly killing her.

After six months in the hospital and another three years tethered to a canister of oxygen, she was able to lead a somewhat normal life.

But over time, that damage caught up with her. As she entered her 50s, her breathing difficulties worsened. By the end of last year, she couldn’t perform most physical activities.

In 2009, she was told she would need a double lung transplant if wanted to live. Even with the transplant, her chances of surviving more than five years would be 70 per cent.

This past January, Swift was taking down her family’s Christmas tree when the pain became too much.

“This will be the last time I ever take down the tree,” she told her son with tears in her eyes. “I don’t think I’ll see next Christmas.”

That night, her phone began ringing around 11:30 p.m. Emotionally exhausted, and not wanting to speak to anyone, Swift initially ignored the call. Finally, at her son’s behest, she answered the phone around midnight.

It was the B.C. Transplant agency.

“How would you like a new pair of lungs?”

Within a couple hours, Swift was at Vancouver General Hospital, ready for a new lease on life.

Swift returned home close to two months later. She had to re-learn how to breathe, as years on a ventilator left her diaphragm muscles atrophied. But she is alive, and almost nine months after the transplant, Swift is walking, cycling, and has even started jogging.

“They won’t let me go bungy-jumping yet,” she laments. “But I played tennis for the first time in 25 years last week.”

Doctors told Swift she was months away from death had they not found a donor when they did. At one point during her ordeal, Swift even considered moving to Ontario, because she felt she had a better shot of finding a donor there.

Canada is the only country in western world without a national organ donor registry. Instead, each province has its own provincial agency to deal with organ donation, and often there is no way of telling if a suitable donor is available out-of-province.

That needs to change, says Swift.

“I know I’m one of the lucky ones,” she says. “When I’d go to the transplant clinic for my tests, I’d always see the same people there waiting, and after a while, some of them weren’t there anymore.

“The wait was too long for them.”

Currently, Canada’s deceased organ donation rate is 14.7 per million, and despite the best efforts of agencies like B.C. Transplant to educate people about the benefits of organ donation, the rate seems to have plateaued in recent years.

Last year, 211 organ transplants were performed in B.C., 145 of those for kidneys. That’s down from 2008, when 266 organ transplants were performed.

Overall, the trend is that organ donation is growing, says B.C. Transplant spokesperson Alison Colina.

Currently, there are more than 350 people across the province waiting for an organ transplant. Across the country, there are more than 4,000.

The wait for a deceased donor organ can range from a few months to years.

In 2008, Canada’s provincial health ministers tasked Canadian Blood Services with reviewing how organ donation and transplantation is conducted in Canada.

Canadian Blood Services set up three committees with close to 50 of the country’s leading health experts to conduct the review, the preliminary recommendations of which are due out this year.

One of the major focusses of the review is the possibility of a national organ donor registry. A national registry could make out-of-province organs available for donation, and provide nationally consistent wait times.

In Alberta, the average wait time for a new kidney is eight years. However, in New Brunswick, the wait is just two years.

“That’s a huge discrepancy,” says Chris Brennan, Canadian Blood Services’ spokesperson for organ donation and transplantation.

One of the biggest obstacles to a national registry, says Brennan, is geography. Organs require oxygen, and have up to a 12 hour shelf life as a result.

“If you have a liver in B.C., it’s not going to get to Newfoundland in time,” he says.

B.C. Transplant supports the move to a national registry, says Colina. In addition to increasing the availability of out-of-province donations, a national organ transplant agency would provide the public with a consistent message about organ donation, coast to coast.

One area the Canadian Blood Service review has already recognized as needing improvement is the capability for organ transplants across the whole of the country, not just in major cities.

“If you live in PEI and need a double lung transplant, you and your whole family will have to move to Toronto if you want to find a donor,” Brennan says. “For some, that’s just not possible.”

Since organ donation doesn’t happen often, increasing the number of organ specialists will mean the health care system will be better able to take advantage of organ donation opportunities, regardless of where the donor or recipient is located.

Of the 25,000 deaths in B.C. each year, less than one per cent of those will die in a way that leads to organ donation, as there are a number of criteria that must be satisfied to determine whether or not a donor is suitable, says Colina.

Of that one per cent, the majority will be deemed unsuitable for transplant.

In B.C., an individual’s body is examined by doctors upon death to see if they are a suitable donor. If they are, a team of transplant surgeons will travel anywhere in the province to harvest the organs and bring them back to Vancouver to perform the transplant surgery.

A single deceased organ donor can save up to seven lives, by passing on the heart, lungs, kidneys, liver, and pancreas. Meanwhile, tissue, ligament and bone donations can greatly improve the quality of a recipient’s life.

“The body is still suitable for an open casket funeral,” says Colina. “Visually, it doesn’t look any different.”

The donor’s family also receives a medal recognizing the significance the gift their loved one has made through organ donation.

Swift wrote a letter to the family of the deceased person who donated their lungs so that she might live. Donors are kept anonymous, but Swift said it was important for her to tell the family how important their donation was to her.

“Thanks to this person, I’m alive,” she says.

A recent survey conducted by B.C. Transplant found that 85 per cent of British Columbians support organ donation. However, just 17 per cent – close to 700,000 – are actually registered to be organ donors.

In Europe, countries like Spain, Austria and Belgium have switched to an opt-out system of organ donation, and have seen their donation rates rise, in some cases to levels more than double that of neighbouring countries with opt-in systems.

Under an opt-out system, consent for organ donation is assumed, unless an individual goes to the effort of removing themselves from the organ donor registry.

Spain currently leads the world with a deceased donation rate of more than 35 per million.

“Spain has really made organ donation a priority,” says Brennan. “There are transplant specialists at every major hospital, so there are able to take advantage of opportunities when they present themselves.

However, there is another reason Spain has such high organ donor rates.

“They don’t have helmet laws,” says Brennan. “In an increasingly safety-oriented society, you are going to have fewer deceased organ donors.”

While Canada was struggled to raise its deceased donor rates, it remains one of the world leaders in live organ donation, says Brennan.

In addition to kidney transplants, living donors can also donate parts of their liver or lungs. In many cases, the donor is a family member of the recipient, as similar genetics increase the likelihood of a successful operation. Live donors must go through months of testing before they can be cleared to donate an organ to make sure they will suffer no significant health complications.

However, that process can take months, something Dennis Teboekhurst feels could be sped along with increased directed funding.

“It’s frustrating to have the transplant held up because I have to wait two weeks to see a psychologist to make sure I’m not being forced to donated my kidney,” he says. “I understand the tests take time, but these people have such a backlog that it takes longer than it should.”

Brennan agreed that increased funding could speed up test results.

“Funding is always a tricky issue,” he says. “Certainly in places like Spain, where they put high priority on organ transplantation, there are positive results.”

Dennis was released from hospital two days after doctors took his left kidney and gave it to his daughter Grace.

Currently, his kidney function is down to 50 per cent of normal, but over time his single remaining kidney will grow and will give him close to 80 per cent of normal function.

As a result, his immune system is weakened. He’s prone to bouts of nausea, but day by day, his strength is returning.

Some things take a little more getting used to, however.

“I can feel my intestines moving around,” he says. “It’s kind of a strange feeling.”

Dennis plans to head back to work in October, while Grace should be getting discharged from B.C. Children’s Hospital any week now, once her immune system is strong enough.

Swift, meanwhile, plans to run a 10-km race in Vancouver next April, and after that she’s like to participate in the World Transplant Games, which are being held in Sweden next year.

“Every day is like Christmas morning,” says Swift. “I have my life back, and for a while I didn’t think that was possible.

• To register to become an organ donor in British Columbia, visit http://www.transplant.bc.ca, or call B.C. Transplant toll-free at 1-800-663-6189. See below for links in the US, Canada, U.K. and Australia.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

New York passes bill to allow on-line organ donor registry

Congratulations to the State of New York for implementing this Act that will help to dramatically improve organ and tissue donation. Go to New York Donor Network for more info. This brings to 47 the number of U.S. states that now have on-line donor registration and I've been told that the remaining three are in the process of doing so as well.

NEW YORK ORGAN DONOR NETWORK APPLAUDS GOVERNOR PATERSON’S SIGNING OF ELECTRONIC SIGNATURE ACT

Law Will Result in Drastically Increased Donor Registry Enrollments to Save Lives

New York, NY - July 8, 2010: Governor David Paterson today signed into law an electronic signature bill that will dramatically improve the organ donation process in New York. The law will allow New Yorkers to register online to become organ donors. The bill passed the Assembly unanimously on April 27 and the Senate on May 12. The Electronic Signature Act eliminates the need to download enrollment forms and mail them in.

The statement from Elaine Berg, President and CEO of the New York Organ Donor Network follows:

“This is an historic day for every New Yorker that is waiting for a lifesaving organ. For years, the New York Organ Donor Network has led the fight for an electronic signature. This bill is the key to streamlining the organ donation registration process; once implemented, its effect will be immediate, and will result in countless lives being saved.

“On behalf of the entire New York Organ Donor Network family, I applaud Governor Paterson for signing this bill into law, and giving New Yorkers the tools they need to step up and sign the donor registry in record numbers.

“We thank Senator Duane, Assemblymen Gottfried and Brodsky, and all of the bill’s cosponsors for their continuing leadership in making this dream a reality. We extend our gratitude to the entire Assembly and Senate for unanimously passing this landmark legislation.”

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help 75 to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Families urged to join Organ Donor Register

With 3 people dying every day in the UK and 18 dying in the US while waiting for an organ or tissue transplant this article is a good reminder of the importance of registering to be a donor and encouraging your friends and family to do likewise. Register to be a donor at the bottom of this post.

By Helen Rae, Evening Chronicle, ChronicleLive.co.uk

FAMILIES in the region are being encouraged to take the time to have a ‘Heart to Heart’ discussion about organ donation.

With three people dying every day while waiting for an organ, NHS Blood and Transplant (NHSBT) is calling for people to think seriously about joining the Organ Donor Register.

In the North East 26% of the population have signed up, meaning 809,184 people have become part of the NHS-based register.

Themed as Heart to Heart, National Transplant Week, which runs until this Sunday, gives people the chance to sit down with their friends and relatives to talk about the issue.

The importance of organ donation is highlighted by the remarkable story of Claire Crozier and her brother Peter Dobing.

Claire, 34, was diagnosed with cardiomyopathy four years ago and doctors at Newcastle’s Freeman Hospital said she urgently needed a new heart.

The mother-of-two had a transplant in 2006, but she suffered a major blow when her older brother, Peter, was diagnosed with the same condition.

Peter, who works in customer services, underwent a heart transplant last year at the same hospital, carried out by the same surgeon who treated his sister.

Claire, of Gosforth, said: “I would like to say a big thank you to everyone who has already signed up to the Organ Donor Register – it is a remarkable thing to do.

“It means so much to me and my family that both Peter and I had the opportunity to continue our lives because we were given heart transplants.

“I encourage as many people as possible to sign up – it really does save lives.”

A Heart to Heart downloadable meal pack is available to get people talking together about organ donation over a tasty meal.

It includes recipes devised by TV chef Lawrence Keogh who had a kidney transplant in 2000.

He said: “Having had a kidney transplant myself, I know the difference it can make.

“I urge everyone to get involved in Transplant Week by having a Heart to Heart conversation with their loved ones and thinking about whether you would be willing to sign the Organ Donor Register.”

Anthony Clarkson, assistant director of organ donation and transplantation, said: “We’ve seen a big rise in the number of people in the UK signing up but it’s still not enough – three people are still dying every day.

“So make sure you download the meal pack, tell your family and friends to do the same, and please take two minutes to support Heart to Heart week by signing up today.”

For more information or to download the Heart to Heart meal pack, visit http://www.organdonation.nhs.uk/transplantweek

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help 75 to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

University student: Donating organs is vital

It's great to see that university students are getting involved in promoting organ donation. This insightful perspective by a University of Pittsburgh student is very enlightening. It's now easier than ever to become an organ and tissue donor as more and more jurisdictions make it a simple task by just going on line and registering. See the links following this article.

By Ragini Grace Gupta / For The Pitt News

Every single person on this campus has the means to impact countless lives. There are currently more than 96,000 people waiting for an organ transplant in the US, according to The International Association for Organ Donation. Each day an average of 17 people die while waiting for an organ donation, and in the past 15 years the number of people on the list has grown by more than 200 percent in America, according to the Lourdes Health System. As medical science advances and new transplants become possible, hope for those waiting hangs solely on the generosity of organ donors.

When I first learned that organs could be given and taken, I was very young. Our housekeeper’s husband needed a kidney. My mom would ask her every week, “Did you find a donor?” and her reply was always, “Still waiting.”

The thought was scary — I doubt I even knew what a kidney was or what it did. Sometimes, the lack of knowledge hinders any chance of forming a connection with something. However, even though we might not be aware of something, it doesn’t mean it has no effect on us.

Originally, organ donation was something I always cringed at because, through my naivety, all I knew was that I was made of “guts.” In high school, I was reacquainted with organ donation at Girls State (an American Legion Auxiliary program for high school juniors in which participants simulate political contests), when a delegate presented a bill on organ donation awareness. The counselors loved the idea so much they gave each girl a handout on becoming an organ donor. At 16 I still thought the idea of organ donation was frightening. The thought of dying and having my organs put into other people was terrifying. Young people don’t think about mortality because, as we would like to believe, we “have our whole lives ahead of us.”

But death is something that we should not think of as so foreign. Everybody has been exposed to death directly or indirectly. Most of us have had family, friends or pets die. We have lamented over our favorite movie characters’ deaths and seen tragic stories about accidents and homicides.

While it is certainly not my intention to preoccupy you with the inevitability of death, I do want you to think about life. How can a person’s life change by receiving an organ? At first, I didn’t like the idea of organ donation because it reminded me of pain, illness and being no more. Then I saw the other side of it — a close family friend was in desperate need of a kidney and he received one from a total stranger. There are many people waiting on the organ transplant list and it is quite possible that you knew, know or will know somebody on that list. The people who suffer because they need healthy organs or tissues are siblings, parents or friends. Thinking about organ donation in a more personal way made it less scary and allowed me to open up more to the idea.

What’s the rush to become an organ donor? I don’t plan on dying any time soon. After coming to college and living by myself, however, I am more aware of all the ways a person could die just doing everyday things. Deaths caused by common things like being in an automobile, getting the flu or an infection are in the top 15 causes of death in the United States.

In the subset of accidents, the most common way to die is as a pedestrian. As students, we spend a lot of time walking on roads and being near cars. Slipping and hitting your head, alcohol poisoning, accidental drug overdose — there are plenty of ways that normal people doing normal things can die. Life is unpredictable — no one knows how long she will live, so we should not wait to become an organ donor, or to do anything for that matter. We may not have our whole lives to do it.

With this perspective, organ donation was no longer a subject to cringe about, but rather it is a reminder to take responsibility for a social issue.

You can become an organ donor by going to organdonor.gov and filling out an organ donor card and keeping it in your wallet. It is also very important to talk to your family about your decision, because you are their responsibility after your death..

E-mail Ragini at rgg6@pitt.edu and visit http://www.organdonor.gov to learn more.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant.

1,200 sign up to UK newspaper's organ donor appeal

This initiative by a UK newspaper to encourage people to register to be an organ donor is a great idea and one I hope will be taken up by newspapers everywhere.

Megan Thomas, left, and Tania Sinclair, mother of Sam Sinclair, hand out organ donor registration cards before York City’s game against Mansfield

By Jennifer Bell The Press

IT is a quest which can make the difference between life and death – and it has had an incredible start.

A month to the day after The Press launched its Lifesavers, more than 1,000 people have answered our call to help.

We are aiming to secure the support of 20,000 people across York and North and East Yorkshire in joining the Organ Donor Register by the end of this year – a move which will spare so many families the heartache of losing a loved one.

New figures now show 1,220 people from this region have signed up since the organ donation drive began exactly one month ago.

Across our circulation area, 245,326 people are now on the NHS Organ Donor Register – but despite this astonishing instant response, we still need more people to sign up and save somebody’s life.

Craig Taylor, spokesman for NHS Blood and Transplant, said the number who have added their names to the register since the launch is a fantastic achievement, and has called on others to follow their example and help the campaign reach its vital goal.

“Readers of The Press have shown great commitment to organ donation by joining the NHS organ donor register since the start of the campaign – if you’ve signed up, thank you,” he said.

“But there is still an urgent need for those who believe in organ donation to act now.

“By joining you will be offering hope to those who are waiting for a life changing transplant.

“Make it one of your 2010 New Year’s resolutions.”

Our campaign – inspired by 22-year-old Miss York finalist and cystic fibrosis sufferer Emma Young who died whilst awaiting a double lung transplant – aims to ease the agony for thousands of people on the UK organ donor transplant list.

There are currently 81 people waiting for a transplant in our circulation area.

Of those, 62 need a kidney; a further three people are awaiting a kidney and pancreas, six people are awaiting a heart, three people are awaiting a liver, six people need a new lung and one person needs a new pancreas.

Since April, 68 people have received a transplant – but in this time four other have died awaiting a lifesaving organ to be donated.

Joanne Turner, donor transplant co-ordinator at York Hospital, said: “If you are thinking about organ donation or support the idea, show it and put your name on the register.”

Steve Hughes, managing editor of The Press, said: “This is an impressive start to the campaign, especially over the busy festive period. “Having an extra 1,220 people on the Organ Donor Register means more families will be spared the needless agony of losing a loved one due to a lack of suitable donors.

“Now we need to use this as a springboard and make 2010 a landmark year for organ donation in our region."


York City fans show their support
FOOTBALL fans were encouraged to sign up to the Organ Donor Register when forms were handed out at York City’s ground.

The promotions drive took place ahead of City’s Blue Square Premier match at home to Mansfield on Boxing Day, and the cause was also publicised in the match programme.

The event was organised by family and friends of Sam Sinclair, a local 19-year-old woman who died in November, following diabetes complications. Simon Mallett, one of those who organised the hand-out, said beforehand: “I just thought this would be a nice thing to do.”


HOW YOU CAN JOIN THE REGISTER
You can join the NHS Organ Donor Register by:

• Going online at http//www.organdonation.nhs.uk

• Phoning the 24-hour donor line on 0300 123 23 23.

• Texting SAVE to 84118.

You can also join when you:

• Register for a driving licence.

• Register at a GP surgery.

• Register for a European Health Insurance Card. (EHIC)

• Apply for a Boots Advantage card.

• Leaflets have also been sent to every shop or outlet that sells The Press, and are also displayed in GPs surgeries, libraries and many hospitals and pharmacies.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant.

Mom tells of daughter's gifts of life

300 business leaders ring the Bells of Christmas at the ninth annual Bells on Toronto's Bay St.

Leaders inspired to register consent for organ  donation

Three hundred business leaders took time from the hustle and bustle of attending holiday gatherings and trying to find the perfect gift for loved ones, to reflect this morning upon the urgent need to make one other vital gift - registration of consent to be an organ and tissue donor. They were participating in Intriciti's ninth annual Bells on Bay St at the Toronto Board of Trade. This festive event provides Toronto business leaders with an opportunity to reflect and demonstrate that having values and faith does not happen only on Sunday.

Under the theme "A Christmas Card", this year's Christmas program took participants on a touching journey led by guest speaker Diane Craig, President of Corporate Class Inc., a donor mother and member of the Trillium Gift of Life Network (TGLN) Board of Directors.

Ms Craig spoke about the tragedy of losing her daughter Sandrine 10 years ago and how through Sandrine's death she gave the gift of life through organ and tissue donation. Ms. Craig urged business leaders to register consent to donate organs and tissues and to 'spend some quiet time with the Holy Spirit' that's in all of us.

"I have the highest regard for Intriciti. It is an organization that has helped so many integrate faith into their daily business affairs. And, I am proud to say that, in both my professional and personal life, my relationship with Intriciti certainly has had a remarkable and positive impact. I am delighted to have spoken at this event and welcome the opportunity to inspire people to register their consent for organ and tissue donation," she said.

Each business leader was given 12 Gift of Life Consent Forms, symbolizing the 12 days of Christmas.

"Together with Intriciti, we are inspiring business leaders throughout the city to make a difference. We want them to take those forms and connect through their business and personal networks to encourage the people they know to help save a life by registering consent to donate. It only takes a few minutes and your decision to register consent could save up to eight lives and enhance as many as 75 others," said Frank Markel, President and CEO of TGLN.

The need to register consent and discuss the decision with family members and friends is great: approximately 1,700 men, women and children in Ontario are waiting for a lifesaving transplant.

"We all have the power to save and enhance lives through the gift of organ and tissue donation. Bells on Bay St. provides a wonderful forum to discuss the issues we face in donation and transplantation and offers an opportunity for business leaders to show their support by registering their consent," said Dr. Bob Bell, President of University Health Network (UHN), and Dr. Gary Levy, Director of Multi-Organ Transplant Program at the University Health Network, who participated in the event.

Through its philanthropic practice area, Intriciti is committed to assisting both faith based and non faith based charitable organizations.

You can register consent to donate organs and tissue by visiting your local Service Ontario Health Card Services - OHIP office or outreach centre where you renew your health card. You can also register by downloading and filling out a Gift of Life Consent Form from http://www.giftoflife.on.ca and mailing it to the address on the form.

If you've already signed your donor card, please also register your decision to ensure that it is recorded in a database and can be made available around the clock. Please also share your decision with your family.

“You Have the Power to Save Lives – Register to be a donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant.

Massachusetts Organ Donation Registry Opens Online

Congratulations to the State of Massachusetts for establishing an online donor registry for organ donation. In today's world of high-tech many jurisdictions around the globe are embracing online registries in an effort to increase the rate of organ donation and save many more lives. Right now, 18 people in the U.S. die each day while waiting for an organ or tissue transplant.

By Elizabeth Cooney Boston Globe

For more than 20 years Massachusetts drivers have been able to register as organ donors when they renewed their driver's licenses. Now there's another way for them to let their wishes be known.

The New England Donor Registry of Donate Life New England allows adults to register as organ donors and specify which organs or tissues they are willing to give after their death, a choice not available through the Massachusetts Registry of Motor Vehicles.

The online registry, which went live earlier this week, will not replace the state's program, but will create another way to potentially boost donations and transplants.

"People's expectations are 'I should be able to sign up online for anything,' so we're simply trying to be as accommodating as possible to people who want to sign up," said Sean Fitzpatrick, a spokesman for the New England Organ Bank, which has created the registry with LifeChoice Donor Services of Connecticut and Western Massachusetts and the Connecticut Eye Bank.

In Massachusetts, 41 percent of drivers are registered donors, a rate above the national average of 38 percent. But the average includes states whose driver licensing agencies don't have donor registries, and Massachusetts ranks just 32nd among states with registries. Half of the states with registries open for five years -- long enough for licenses to be renewed -- have donor rates above 50 percent.

In New England, the rate is 38 percent, not including Vermont, which is planning to start a program for drivers to register as donors, and New Hampshire, which began its driver registration program in February. As in other states, drivers in Vermont and New Hampshire could indicate their willingness to be an organ donor on their licenses, but being listed in a donor registry had not been part of the program.

More than 100,000 people in the country are waiting for a transplant, including 3,400 in New England, but there were just under 28,000 organ transplants nationally last year.

Registering for organ donation can also help family members whom potential donors leave behind when they die.

"If somebody is signed up as a donor through the registry, we work to see their wishes are fulfilled," Fitzpatrick said. "We have found that the next of kin are very appreciative when they find out the deceased had made the decision. That way they are not the ones that are left having to make decisions that they might not really know how the deceased felt about. To make this decision now is oftentimes helpful to the next of kin."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant.

Georgia Launches New Online Organ and Tissue Donor Registry

By launching an on-line organ and tissue donor registry the state of Georgia joins a growing number of U.S. states and other jurisdictions that have also taken this initiative to help increase the rate of organ donation. To find out how to register in your state go to ShareYourLife.org

Savannah Tribune

LifeLink of Georgia, the non-profit organ recovery agency, in partnership with the Georgia Department of Driver Services and Donate Life Georgia, a non-profit coalition of the state’s organ, tissue and eye donation and transplantation programs and other organizations with an interest in organ, tissue and eye donation announce the launch of the State’s new web-based organ and tissue donor registry.

The newly enacted Georgia Revised Uniform Anatomical Gift Act (UAGA), also known as Senate Bill 405, allows residents to legally designate their wish to save lives as an organ and tissue donor from the comfort of their home by visiting www.donatelifegeorgia. org.

For years, Georgians were required to visit a local driver services office to register as an organ and tissue donor. Registration is still available at the driver services offices but individuals can now also choose to register anywhere that has internet access. Registrations are secure and registered donors will have the opportunity to update their profile or remove themselves from the registry.

“We are thankful to the authors of the Georgia Revised Uniform Anatomical Gift Act for sponsoring the bill in 2008. It now allows individuals the opportunity to save lives through donation,” said Kathleen Lilly, Sr. Vice President/Executive Director, LifeLink of Georgia. “We also want to thank the Georgia Department of Driver Services for working with LifeLink of Georgia and the donor registry team to facilitate the completion of this important technology.”

Close to 3,000 Georgians are waiting for an organ transplant and hundreds more wait for corneal and tissue transplants which can help restore vision, treat burns and prevent amputations, etc.

To learn more about the Donate Life Georgia Organ Tissue Donor Registry visit http://www.donatelifegeorgia.org or contact Donate Life Georgia at 1-866-57-SHARE (74273).

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ transplant.

Former Boeing 747 pilot doing well following double-lung transplant

Life or death: Marco Island transplant survivor likes new organ donor system

By Jeff Weiner Naplesnews.com

MARCO ISLAND, Florida — Ken Ryngala used to fly. Then, a crippling disease left him barely able to walk across his house.

He lost his wings when he lost his lungs. Then, he nearly lost his life.

The state recently instituted a new organ donor registration system. The system, called the Joshua Abbott Organ and Tissue Donor Registry, allows Floridians to register themselves as organ donors from the comfort of their own homes, an innovation that Ryngala hopes will lead to an increase in life-saving donations.

That’s because Ryngala,, a former Boeing 747 pilot who received a double lung transplant in 2007 in Tampa, knows what it’s like to wait on a list for a life-granting call that may or may not come in time.

Ryngala, of Marco Island, was diagnosed with idiopathic pulmonary fibrosis. Idiopathic, by its definition, means that the cause of the disease was unclear. However, the prognosis wasn’t.

Ryngala said he was told that, without a transplant, he would die.

“I think I had an unusual reaction to it,” said Ryngala, who said he was calm when he heard the news.

He said that he was focused on the finality of the diagnosis.

“I knew what day I was going to die,” he said.

So, like thousands of others across the nation, Ryngala found himself on a list, waiting in line for an organ. Nationwide, there are more than 102,000 people waiting for organs, including more than 3,600 in Florida alone, according to the Organ Procurement and Transplantation Network.

Wait times for organs can stretch for months or even years. According to Organ Procurement and Transplantation Network data, more than 2,500 patients have died on waiting lists in the U.S. in the current year alone, and more than 86,000 since 1995.

Yet, of the more than 18 million people estimated to be living in the state, fewer than 5 million are registered as organ donors, according to Donate Life Florida.

That’s a number that Jennifer Krouse, a spokeswoman with the organization, hopes to see increase dramatically.

“We sure do hope so,” said Krouse, who touted the simplicity and accessibility of the new system as its most important attributes.

“The new registry allows for 24-hour-a-day access,” she said, adding that registration takes only minutes.

Krouse called the previous system, which required people interested in becoming organ donors to wait in line at the Department of Motor Vehicles, “obsolete” and promised that the new system, despite its easy accessibility, is “super secure.”

However, both Krouse and Ryngala admit that online registration cannot lead to the kind of dramatic increase in registered donors that they hope to achieve. Krouse said that her organization is focusing on education through cooperation with schools and businesses and through the use of public service announcements.

“Really, we have quite a long way to go,” said Krouse of her goal to increase registration and cut down on wait times that can be fatal to those who don’t find a match.

Ryngala was lucky in that regard. He said he only spent about a month on the waiting list; he was bumped up due to the severity of his condition. Still, he said he was only barely holding on when the call came at 2 a.m. to tell him that his organ had arrived.

“When I got the phone call, frankly, my doctor told me I was on my last gasp,” said Ryngala, who said he was on oxygen 24 hours a day.

“I happened to get a very good set of lungs,” Ryngala said. “Not everybody’s that lucky.”

Lucky may be an understatement. Transplants are always tricky, and there’s always a possibility of rejection.

Ryngala’s, so far, seems to have been a complete success.

“I feel like a million bucks,” Ryngala said. “It’s unbelievable.”

Ryngala said he was back to work as a flight instructor within three months of his surgery. Now, he’s waiting for the Federal Aviation Administration to decide whether he is healthy enough to get his wings back, so he can get back in the cockpit and fly again.

Ryngala emphasized the importance of educating the public, in the hopes that more people will choose to donate.

“It’s the most generous thing you can give,” he said.

Ryngala said that he understands if some people have personal or religious objections to organ donation. But the one thing he won’t accept is the idea that people, who would otherwise donate, don’t because they don’t know how to sign up.

“If people aren’t donating simply because they’re not aware, that’s a travesty,” Ryngala said. “It’s clear that there are so many people waiting that could be saved.”

According to Krouse, within about a week of the new system’s July 28 launch, more than 1,400 people already had registered online, leading her to call the launch “a success.”

Ryngala hopes that increased awareness will boost the registry further, helping others to find what he has: A new lease on life.

“I wouldn’t have known who won the election or the Yankees game yesterday; I wouldn’t be here,” he said, before hastily correcting himself.

“I guess I should say the Rays game,” he said.

Donate Life Florida, the organization responsible for the new registry, is a nonprofit organization that was contracted by the Florida Agency for Health Care Administration in April to replace the previous system, which was considered archaic. It receives its funding through voluntary $1 donations collected when people renew their license or vehicle tag.

Donors are kept anonymous, but Ryngala said he was given the option to write a letter to the family of his donor. But he said he hasn’t done so just yet.

“I was waiting to get my wings back so I could tell them,” he said.

* * * * *

Anyone interested in signing up as a donor or updating donor registration information can do so online, at http://www.DonateLifeFlorida.org.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ transplant.

She's been given the gift of life

The media has been very much on board by covering Organ and Tissue Donation Awareness events during the month of April. Newspapers, TV and radio are being saturated with coverage about the importance of organ donation and registering to be an organ donor. This event in Langley, British Columbia is just one of thousands of similar activities in communities all across North America. All of this publicity has got to have an impact...at least I hope so.

Heart recipient Langley resident Diane Baker spoke at the BC Transplant conference at the Langley Events Center on Monday.
Photo: John GORDON/Langley Times

By Monique Tamminga - Langley Times

Diane Baker is alive today because someone else’s heart is beating in her chest.

For nearly five years now, the single mother of two now-grown children has woken up every morning and thanked her donor and her donor’s family for giving her the gift of life.

She’s seen both her kids graduate from high school and, recently, from universities.

“There are no words to adequately describe how profoundly awesome the gift of life is,” Baker told a crowd at the launch of BC Transplant’s organ donor awareness week, held at the new Langley Events Center on Monday.

Numerous transplant recipients, and those still waiting for organs, attended the kick-off, including Langley Township councillor Charlie Fox, whose wife’s kidney was a match to give him a second chance at life. She was able to give her kidney to her husband and he’s already back working for the Township, less than two months later

Baker’s heart never worked properly. Until five years ago, she thought it was normal to hear your heart beating all the time.

One day, after Baker celebrated her 49th birthday, she fainted while reading in bed. Her daughter Laura came to say goodnight and as the two chatted for a couple minutes, Diane went faint.

The very proud single mother of two asked her son Evan to drive her to emergency.

Baker had always had heart problems, being sent for angiograms with a heart that beat erratically. This came despite living a healthy lifestyle, both trying to keep as active as her heart would let her and eating well.

When she went into ER, doctors gave her a pacemaker because her heart was only beating 30 times a minute. She was told to go home and be active. She tried and couldn’t.

Four months later she ended up in emergency again and was sent for a heart biopsy where she was finally given a proper diagnosis. Sadly, that diagnosis was fatal.

Cardiac sorcoidosis with congestive heart failure, was what she was told.

“Virtually overnight, it seemed I was dying,” she said.

“I could only walk about 10 feet before I had to stop to catch my breath.”

The rare disease attacks the heart muscle.

“Usually, a person should have a hole in their heart the size of the tip of a finger. Mine was the size of a mandarin orange,” she said.

At first, she was told she wasn’t a candidate for a new heart.

Doctors believed the sacroid would attack her heart. Through all of it she was determined to stay alive for her kids’ sake.

But something in Baker refused to even think of death.

On the morning the hospital called to say they had a heart ready for her she told them she didn’t think she could go because she didn’t have a ride.

“I packed my suitcase but couldn’t lift it,” she said.

“When the paramedics arrived, I came to the door and asked for a minute.

“I hugged my kids and said see you tomorrow. I sent them off to school,” she said.

“I just didn’t believe it was happening,” she said.

But it did happen and she’s walking, living proof.

There are currently 11 Langley residents waiting for a life-saving organ transplant, including youth activist Todd Hauptman who is waiting for a kidney.

Richard Brown was also in the audience, breathing easier thanks to a double lung transplant nearly two years ago.

In total, 69 Langley residents are alive today thanks to an organ transplant.

In Langley, volunteers will be in malls, and in other locations throughout City and Township “to encourage the people of Langley to register their decision (about organ donation),” says BC Transplant spokesperson Lisa Despins.

While many people in the province remember the former method of registering as a donor, a decal on a driver’s licence, that system has been gone since 1997, Despins said.

BC Transplant wanted the system to be open not just to motorists, but to everyone, and to make it easier for medical staff to get the information in a time of emergency.

Today’s online system allows anyone to register, and allows them to specify which organs they wish or donate, a distinction which was not available with the old driver’s licence decal system.

“People can see, in black and white, what your wish is,” said Despins.

Langley is a little above the average, with 17 per cent of the population registering, while in Kelowna 23 per cent of residents have registered.

There are some 300 British Columbians on the transplant list, as recipients.

In 2008, a record 266 transplants were performed in British Columbia, the third consecutive record-setting year.

Contributing to this success was a historical high in the number of organs available from people who have died, and a 42 per cent increase in the number of donors from the year previous.

More information, and online registration as a donor is available at BC Transplant, or call 1-800-663-6189.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Organ Donor Registration drive personal for Brockville, Ontario woman

Pamela Harper holds a picture of her daughter, Katherine Paine, who died two years ago after waiting too long for a heart transplant. Ronald Zajac/Staff Writer

By Ronald Zajac The Recorder & Times

Pamela Harper has been working hard to make sure other parents don’t suffer a loss as terrible as her own.

She hopes the fruits of that labor will take the form of signatures at an organ donation awareness event next weekend.

“The main thing is the registration drive,” said Harper, organizer of the Organ and Tissue Donation Awareness and Registration Drive taking place at St. Mary Catholic High School on Sunday, Apr. 26.

The event will feature guest speakers, a “living green ribbon” and efforts to get as many people as possible to sign organ donation consent forms.

Harper believes more signatures on donation forms might have prevented the tragic loss of her daughter, Katherine Paine, to whom the event is dedicated.

Katherine, who was 12 and a St. Mary student when she died, was born with a heart defect that was compounded by an infection in 2006.

In September of that year, Katherine was put on a waiting list for a heart transplant and it took five months for a heart to become available.

“I believe she would be alive today if we hadn’t have had to wait so long,” said Harper.

A heart finally became available for Katherine in February 2007, but by then the health complications had made the transplant impossible.

“She didn’t have the fight,” said Harper.

The registration drive aims to prevent other families from going through such an agonizing loss.

“The idea is to close the gap on the waiting period,” said Harper.

“Children like Katherine, we wouldn’t have to lose them prematurely if that gap was smaller.”

The Apr. 26 event starts at 2 p.m. and will feature testimonials from guest speakers.

Harper will share her own story, while former Brockville Mayor Ben TeKamp and his daughter, Robin, will recount their own transplant story.

Robin TeKamp gave a kidney to her father almost exactly two years ago.

Ben Giroux, a 15-year-old heart recipient from Ottawa and his mother, Misty, whom Harper met during her daughter’s ordeal, will also share their story, while speakers from the Ontario East Transplant Support Group will discuss organ donation on behalf of the Trillium Gift of Life Network.

There will also be a bit of comic relief – although not for the faint of heart.

The agenda includes a brief video presentation entitled “How Not to Ask for Donations,” featuring the irreverent and more than a little bloody “Live Organ Transplants” sequence from Monty Python’s film The Meaning of Life.

Harper said the clip aims to capture a bit of her late daughter’s particular sense of humour.

“She loved gross stuff, she loved gory stuff and she had a great sense of humour,” she said.

“It’s such a heavy subject. I think a bit of humour is needed.”

On the more serious side, the event will include a “living green ribbon” ceremony in the schoolyard, in which participants will form the Trillium Gift of Life green ribbon symbol, with each person in the formation representing someone on the transplant waiting list.

Harper does not have a specific target figure for consent form signatures, but she hopes to have 250 of the forms on hand at the event and discuss ways those forms can be made more easily available to people.

And while this kind of community organizing is not Harper’s specialty, all that work has had a cathartic effect for the grieving mom.

“Even though Katherine is gone, I still feel I’m taking care of her,” she said.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

New round-the-clock access to organ donor database benefiting the desperately ill

Canadian Press

TORONTO — Unprecedented access to a database of Ontario organ donors is dramatically changing the way hospitals are getting life-saving donations to desperately ill people, says the head of the province's organ and tissue donation agency.

While donation consent has been captured through the province's health insurance program - OHIP - since 1995, it wasn't until November that the Trillium Gift of Life Network gained real-time access to that valuable information.

"Before, even though people registered their wishes with OHIP, the only way we would know about it is if someone in the hospital or a family member came upon the (health) card while going through the person's wallet," said CEO and president Frank Markel.

"Now, when someone goes into hospital and they're a potential donor, we get their OHIP number from the hospital staff. We then call OHIP and they tell us whether the person has registered their wishes to be a donor or not."

The new process, made possible through a 24-hour phone line that went live in mid-November and operates seven days a week, has already made an impact.

Although health cards for people who registered to be an organ donor carry the word donor on the back, locating the cards, especially in an emergency situation, often proved difficult.

"We really weren't getting many situations where we could identify the donor information from a card in a wallet," Markel said.

While families are still approached about the possibility of donating a loved one's organs, being able to present a paper copy of that person's consent form by accessing the database has gone a long way in informing their decision.

"We had a case recently where family members were divided about whether to agree to donation or not," Markel said.

"When we checked the file the person was registered as a donor, and when we were able to present that information to the family it helped convince them to let us proceed with donation."

It's a welcome change in a province where the current waiting list for organs sits at nearly 1,700 people - a figure that includes both adults and children.


That overwhelming need also saw changes made in December to the way the province asks residents if they want to become donors.

It's called affirmative registration, and the hope is that it will see more people agree to be donors.

More than 900,000 Ontario residents renew their health cards each year. Research indicates that jurisdictions with a yes-only registry, and that no longer ask for no or undecided responses, have experienced an increase in donor registrations, according to the Health Ministry's website.

Markel noted that in one service area in the western U.S. that covers all of Utah and parts of Idaho and Wyoming, a yes-only registry has seen some 70 per cent of the population agree to donate.

In Nova Scotia, where affirmative consent has been the standing policy, 44.3 per cent of eligible residents are on the list.

The current consent rate in Ontario is a paltry 12.5 per cent, or approximately 1.75 million people.

Kathy Gough knows just how life-altering organ donation can be.
The mother from Powassan, Ont., has lost both of her daughters to illnesses following double-lung transplants. The girls, Emily and Jessica, both suffered from cystic fibrosis.

She said donation gave her daughters an opportunity to come home and finish living their lives. In the case of Jessica, whose death came just two weeks ago at age 19, that meant living on her own for a short time and getting a job.

Gough said that although any increase in prospective donors is a good thing, she'd prefer the province adopt a presumed-consent system for organ donation - a method employed in 20 European countries and Singapore.

That system sees people who don't want to become donors opt out by ensuring their name is placed on a national registry.

"It doesn't matter what laws are put in, there's always a resistance to it anyways, but as time goes on people realize, 'oh, that was a good thing,' " said Gough, who thinks it could work in Ontario if the public was better educated.

"The first step is to get the proper educational literature out there. (Organ donation) needs to be more in the public because until they do that, it's not going to be on people's minds."

A 2007 report from the Citizens Panel on Increasing Organ Donations strongly suggested the province avoid a presumed-consent system, saying neither the public, nor doctors, were comfortable with the idea.

NDP legislature member Peter Kormos, who has been leading the fight for presumed consent in the province for years, disagrees with that assessment.

"At first blush, people go 'oh my,' but the more it gets discussed - and it has been discussed reasonably vigorously - people start to reflect and start to change their minds."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

YOU CAN HELP MAKE SURE LIFE GOES ON

Column in the North-West Evening Mail

ALL it took was a tick in a little box to make a commitment which will stay with me for the rest of my life and maybe beyond.

What have I done? Simply offered parts of my body to others once I shuffle off this mortal coil.

However, what they harvest from is another question. I don’t think my eyes would be any good, given that I’ve worn milk bottle bottom specs for 40 years.

My liver and kidneys could have been treated with more tenderness I suppose, and as I’ve grown older the knees and other joints have become a bit rickety.

But what remains, if they want any of it, may help others have the gift of life.

Becoming an organ transplant donor couldn’t be easier as I discovered, and while I would advocate others to join the crusade, the thought of it may actually make some feel a bit squeamish.

My conversion came by way of receiving a new driving licence from the DVLA, but you can register on a website or by calling the NHS organ donor line.

I read on the NHS organ donor website today that more than 9,000 people in the UK need a transplant that could save or dramatically improve their life.

Most are waiting for a kidney, others for a heart, lung or liver transplant. But less than 3,000 transplants are carried out each year.

Transplants are one of the most miraculous achievements of modern medicine. But they depend entirely on the generosity of donors and their families who are willing to make this lifesaving gift to others.

There is a desperate need for more donors. Last year more than 400 people died while waiting for a transplant. One in 10 waiting for a heart transplant will die and many others will lose their lives before they even get on to the waiting list.

It makes sense that the more people who pledge to donate their organs after their death, the more others will benefit.

Every day you read of sick people who could return to a healthier life if they receive a body part.

And while it may be easy for adults to make a conscious decision about how they tackle their own future, I can understand how a parent would feel releasing body parts of their children or other members of their family if they have not registered.

However, despite it being a taboo subject for many, by choosing to join the NHS Organ Donor Register you could help make sure life goes on.

As I peered bleary-eyed through my bedroom window on Sunday morning something brought a smile to my face.

I had anticipated my daffodils would bloom soon, but seeing the tender petals shake out of their protective winter coats and burst into life was a joy to behold.

What made me feel even better was to see the first shoots of brightly-coloured crocus flowers battle their way through.

Suddenly the icy chills that we have been witnessing didn’t feel so cold.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves