Thursday, September 02, 2010

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, 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: - 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 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

No comments: