Controversial Japanese child organ transplant bill voted into law

The Mainichi Daily News

A controversial bill amending the Law on Organ Transplantation that defines brain death as the legal death of a person was passed into law Monday afternoon.

The bill was one of three bills to be voted on by House of Councillors members, and was passed by a majority of 138 to 82. Under the amendments, provisions of the organ transplant law that forbid organ donations by children under 15 will be repealed, opening the way for organ transplants between children. The new law also marks the first time that brain death has been recognized as the legal death of a person in Japan.

During deliberations on the successful bill, the bill's sponsor explained that the brain death provisions of the amendments would apply only to instances of organ donation, not to the definition of legal death generally.

Under current organ transplantation laws, those under 15 cannot donate organs, and children in need of an organ transplant must have the procedure done overseas. However, the World Health Organization is encouraging nations to focus on domestic transplants. Since the current transplant law came into effect in 1997, there have been only 81 organ transplants from brain dead donors, and the amendment passed Monday -- allowing children to donate organs and defining brain death as legal death for organ donors -- aims to greatly expand organ donations.

The successful transplant law amendments passed the House of Representatives on June 18 with some 60 percent of members in favor, and were sent to the Upper House for final approval. However, there were many Upper House members who took the position that, while it was certainly necessary to expand organ donations in Japan, broader social consent to redefine legal death was lacking, and members from both in and outside the government presented an amendment to the bill that would have retained the current definition of brain death.

However, core supporters of the bill were adamant that to change the brain death provisions of the bill would render the legislation "meaningless," and, along with many other Upper House members who labeled the latest amended bill "insufficient," rejected it in favor of the original revision. Nevertheless, the bill's sponsor felt compelled to address opponents' concerns that the bill would lead to a widening tendency to withdraw treatment after brain death in all cases, emphasizing that the brain death provisions were "not to be applied beyond the scope of the Law on Organ Transplantation."

Controversial sections of the legislation included provisions allowing a deceased person's family to approve of organ donations even in cases where it is unknown whether the deceased intended to do so, as if it is discovered that the deceased did not want to donate their organs after they have been removed. Furthermore, the difficulty of determining brain death in children versus adults was also an issue during the debate.

An amendment to the original bill was rejected by a vote of 135 to 72. A move to keep the current law in place for now while creating a one year commission to study child brain death and the implementation of children's organ transplants was not put to a vote.

Other than the Japanese Communist Party -- which supported the one year commission proposal -- all the parties allowed their members to vote freely according to their personal views on life and death.

Click here for the original Japanese story.

“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

Lung transplant not a good match

I know many patients who have had several 'false alarms' after being called in for their lung transplant. It is a devastating experience after going through the exhilaration and excitement of receiving the call to rush to the hospital for a second chance at life. I've been through it and fortunately my donor lung was suitable for transplant. I know of one patient in England who had 11 false alarms before he finally got a suitable pair of lungs. Let's hope that Holly Bergo gets another call soon.

Holly, who is in her late 30's, has Lymphangioleiomyomatosis (LAM), a progressive disease that strikes women in the prime of their lives. It unleashes abnormal muscle cells on patients’ lung, where they form cysts and bore holes in healthy tissue. Read her story in my June 30th post.

June 9th - (WDAY TV) - Disappointing news tonight for Holly Bergo, she got the call today from the Mayo Clinic in Rochester.

A match had been found for a double-lung transplant, but tonight, friends of holly tell us it's not a good match.

Holly is battling a rare, incurable lung disease. Her only chance at survival is a transplant.

“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

Help inner-city children enjoy summer in the country

I received a special request from Sara Wilson of The Fresh Air Fund in New York City asking me to help by promoting it on my blog, which I'm very pleased to do.

Sara notes that "The Fresh Air Fund is looking for runners and sponsors to join our Fresh Air Fund-Racers team for the NYC Half-Marathon on August 16th. Last summer's NYC Half-Marathon was a huge success and the Fresh Air Fund-Racers raised more than $125,000. We are also still in need of Friendly Town hosts for next month. Host families open their hearts and home to a NYC child who would not otherwise have the opportunity to escape the hot, crowded city streets."

In our transplant community we often talk about the "Gift of Life" that transforms us and presents us with a lifetime of opportunities. To my way of thinking, that 'transformation' can also take place when children are given the "Gift of Fun" that has the potential to open the door to a lifetime of opportunities for them.

How to help Fresh Air Fund children have some fun this summer

• Run in this year's New York City Half-Marathon August 16th (Maybe you would have liked to have gone to Australia for the World Transplant Games this year but couldn't due to financial and time constraints - Here's a chance to take part in something worthwhile closer to home.)


• Host a Child - thanks to host families who open up their homes for a few weeks each summer, children growing up in New York City’s toughest neighborhoods have experienced the joys of Fresh Air experiences.


• Donate to The Fresh Air Fund - Every year, The Fresh Air Fund gives thousands of inner-city children the priceless gift of fun – and opens the door to a lifetime of opportunities.

Any help you can give to make it possible for a child to escape the hot, crowded city streets this summer will be greatly appreciated. Thanks, Merv.

“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

British transplant survivor, 20, going to the World Transplant Games in Australia

Organ transplant recipients, many of whom have never been able to take part in athletics due to their medical problems, are inspired and motivated to show the world that they are now able to live normally and even compete in sports activities. Such is the wonderful transformation that takes place after receiving the "Gift of Life".

LIVER transplant survivor Jon Fox is hoping to be a smash hit in his quest for sporting gold at the World Transplant Games in Australia (Aug 22-30, 2009).

By Harry Hogger DorsetEcho U.K.

LIVER transplant survivor Jon Fox is hoping to be a smash hit in his quest for sporting gold Down Under.

Twenty-year-old Jon, from Dorchester, will be representing his country at the World Transplant Games in Australia both in the pool and on the badminton court.

Jon, who won a gold and two silvers at the games in Canada in 2005, will go up against competitors from 69 other countries at the tournament, which aims to promote organ donation.

Not content with taking to the pool in the 50m and 200m breaststroke and freestyle swimming, Jon – who had a life-saving liver transplant at the age of eight – will also be representing the United Kingdom at badminton.

He said: “More than anything it’s to promote organ donation, that’s the main aspect of it.

“I was born with a genetic liver disease and I was ill throughout my life until the transplant.

“I wouldn’t be here today if it hadn’t worked.”

Jon said his operation completely changed his life and he will forever be grateful to the anonymous donor whose organ he benefited from.

He said: “Before, I didn’t go out at all but afterwards my parents would hardly see me, I would go out and I had friends which was something I didn’t have before.

“Apart from once a couple of years ago I haven’t really been ill.”

Jon added: “I can’t thank my donor and their family enough.

“If anyone is thinking about carrying a donor card I would say please just do it.”

Jon has been given a helping hand with his training by West Dorset District Council with free membership of the Thomas Hardye Leisure Centre.

He said: “I am really excited about the games and trying to fit in as much training as I can.

“The staff at the leisure centre have been brilliant, it’s a great place to train.”

Jon is competing in the games to raise money for Transplant Sport UK, a charity that aims to raise organ donation awareness.

To sponsor him in his efforts, visit http://www.justgiving.com/jonfox89.

“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

'Don't keep donor intentions secret'

This is National Transplant Week in the UK and the British papers are full of stories promoting organ donation awareness. I selected this one because it exemplifies the importance of talking to your family and loved ones about your intentions to be an organ donor. I also agree with Lewis Sander's views on an 'opt out' or 'presumed consent' system for organ donation. As Mr Sander says, "Giving an organ should be just that – a gift – and that’s how things should remain".

Northampton Chronical

A DOUBLE transplant patient from Northampton is appealing to anyone who wants to donate organs after their death not to keep it a secret from their family or risk jeopardizing their wish.

Lewis Sander has received both a new heart and a new kidney from donors. He now campaigns for awareness about the way organ transplants work and is helping spread the word during National Transplant Week, which is this week.

Mr Sander, from Wheatfield Road, Abington, Northampton, said the lives of many more ill people could be saved if the potential donors would fully face up to their responsibilities.

The 60-year-old, who is the ex-chairman of Northamptonshire Kidney Patients’ Association, said: “The biggest problem with donation at the moment is that some people will carry a card and be on the register yet not talk to their family about it.

“Consequently, it’s a bit difficult for all concerned if a surgeon says to someone’s parents: ‘Your son’s just died’ and then, in the same breath, says: ‘By the way, can we have his organs’?.

“If they are not prepared it’s very tough for people to comprehend something like that and permission is sometimes refused. The pity is that there’s not enough organs because of that.”

Mr Sander was diagnosed with heart trouble aged 13. In October 1998 he was given the heart of a 26-year-old who had died during an operation at Harefield Hospital, Middlesex, following a car crash. Mr Sander is now chairman of their club for ex-transplant patients.

Nine years later, the anti-rejection medication had caused severe kidney damage which required a kidney transplant.

However, despite his two life-saving operations Mr Sander said he comes down on the ‘against’ side of the controversial debate about presumed consent for organ donations.

He said: “Having to opt out of something like that feels a bit too much like a conveyor belt approach. Giving an organ should be just that – a gift – and that’s how things should remain.”

“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

National Transplant Week in the UK July 5th to 12th

Only 16,286,656 people- 26 per cent of the UK population- are registered donors and in the last two months alone more than 3,500 organ transplants were carried out.

The Sidemouth Herald, UK

July 5th - A SIDMOUTH man, whose life has been transformed by a kidney transplant, is urging people to sign up to the organ donor register.

National Transplant Week begins today (for a list of events click here) and Mel McColm is hoping by telling his story it will encourage people to add their names to the list.

Rhodesian Mr McColm, 64, of Winslade Road, was diagnosed with polycystic kidneys at the age of 47 and if he had not escaped his war-torn country he says he would have died, with no chance of a transplant.

But in 1996 Mr McColm and his wife, Ann, moved to Sidmouth and, although he was given a three in 10,000 chance of finding a kidney match, last year his dream became a reality.

He said: "It's like winning the lottery. One day your number comes up and your life changes. You are given another chance and it is overwhelming."

Mr McColm recently met the family of his kidney donor, 21-year-old Daniel, who was killed in a road accident.

And it was just in a passing conversation with his mother that Daniel said he wanted to be a donor.

"A lot of people think of signing up but never get round to doing it," Mr McColm added.

Only 16,286,656 people- 26 per cent of the population- are registered donors and in the last two months alone more than 3,500 organ transplants were carried out.

Mr McColm said: "Everybody should think very carefully and look inside all the generosity they have.

"One day maybe one of their family may need an organ or they may need one themselves-that is a really a big thing to consider."

Mr McColm will be meeting Daniel's extended family soon and they are also appealing for people to sign the organ donor register.

"They really get a lot of strength because it has done such a lot of good," he said.

"All of them are now on the register."

To sign up go to the NHS Organ Donor Register or ring 0300 123 2323 which is open 24 hours a day.

“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

Happy 4th of July

Happy Independence Day to my American friends as you celebrate the 233rd birthday of your wonderful country. I hope you have a great weekend with the celebrations, fireworks, parades and bbq's.

“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

Pre-Flight Testing Urged for All Travelers With Restrictive Lung Disease

As someone who had a lung transplant as a result of restrictive lung disease (IPF) this article has special importance for me. The authors suggest that anyone with a resting oxygen saturation less than 95% should be assessed for the need for supplemental in-flight oxygen.

From Medscape Pulmonary Medicine

All patients with severe extrapulmonary restrictive lung disease should undergo a hypoxic challenge test prior to air travel, according to a report in the June issue of Thorax.

The authors of the paper, led by Dr. M. W. Elliott from St. James's University Hospital, Leeds, UK, note that according to British Thoracic Society guidelines, travelers with respiratory disease do not need to be assessed for a need for supplemental in-flight oxygen if their resting oxygen saturation is greater than 95%. These guidelines, the authors say, are based "on anecdotal evidence and little data."

To assess the appropriateness of the British guidelines, the researchers administered hypoxic challenge tests to 19 adults with kyphoscoliosis or neuromuscular disease, all of whom were at risk for nocturnal hypoventilation and 15 of whom used home ventilators while sleeping.

All subjects completed the challenge with no adverse effects, although testing was aborted in 5 patients when oxygen saturation fell below 85%. Three of these 5 had resting oxygen saturation levels above 95%.

Based on the results of the hypoxic challenge tests, supplemental in-flight oxygen would be recommended for 50% of the patients with resting oxygen saturation above 95% (who would not be deemed by the British Thoracic Society guidelines to require in-flight oxygen) and 71% of patients with borderline baseline oxygen saturation (92-95%).

Only 4 of the 19 patients in this study would definitely not require in-flight oxygen based on the test result, the researchers note.

There was no consistent relationship between the change in partial pressure of arterial oxygen (PaO2) and the change in partial pressure of arterial carbon dioxide (PaCO2) during hypoxic challenge, the investigators say.

"This finding suggests that all patients with severe extrapulmonary restrictive lung disease should undergo assessment with hypoxic challenge test prior to air travel," the authors conclude. "The study confirms that even patients with a resting saturation of >95% can desaturate significantly during hypoxic challenge."

"A decision as to whether it is safe for a patient to fly should be made by an experienced clinician...based on a number of factors, which should include previous travel experience, the patient's overall condition, and the results of a hypoxic challenge test," they add.

Source:
Thorax 2009;64:532-534.

“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

Happy Canada Day

Happy Canada Day to Canadians everywhere as we celebrate the birth of our nation in 1867. I hope you enjoy the parades, BBQs and fireworks. Merv. (Unfortunately, 24,000 Toronto civic workers have been on strike for 10 days now so there will be no traditional fireworks in Toronto, Canada's largest city. What a shame!)

“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

A life interrupted: Moorhead, North Dakota nurse waits for double lung transplant

I have a very good friend who will be celebrating the 7 year anniversary of her double-lung transplant this summer. She had the same diseases as Holly Bergo who is profiled here. Holly has Lymphangioleiomyomatosis (LAM), a progressive disease that strikes women in the prime of their lives. It unleashes abnormal muscle cells on patients’ lung, where they form cysts and bore holes in healthy tissue. My friend's life has been transformed by her transplant and she is now full of life with boundless energy. Hopefully Holly Bergo will experience the same "gift of life" when she receives her transplant. You can help with her medical and living expenses by clicking on the links below. Merv.

By Mila Koumpilova INFORUM

Holly Bergo’s new pulmonologist had one word for her after poring over her CT scan: impressive.

He had never seen lungs so ravaged by illness, with an owner who had clung so gamely to her lifestyle.

That was in 2007, and for more than a year, Bergo kept going: She remained the roving public health nurse known among clients as “Jolly Holly” and the former cheerleader her many friends deemed a “spiritual picker-upper.”

But over the past year, a rare, incurable lung disease has slowly dismantled that life. These days, Bergo is mostly confined to her Moorhead apartment, with only two tasks: Wait for a phone call from the Mayo Clinic summoning her for a double lung transplant surgery and keep breathing.

Well, there’s also comforting the occasional teary friend and joking about meeting a cute doctor at Mayo.

“Holly hasn’t lost her humility and her grace and her humor and her beautiful, outgoing personality,” said Michelle Eldredge, who along with other friends is organizing a July benefit for Bergo.

Not breathing easy

For years, Bergo thought she had asthma. She was misdiagnosed after shortness of breath started hounding her constantly. The meds seemed to help.

Shortly after, she went to get a second bachelor’s in nursing at North Dakota State University, where she’d once been a Bison football cheerleader. When she graduated, she got a job at Cass County Public Health. Climbing the two flights of stairs to her office became an increasingly breath-robbing ordeal.

She kept telling herself she needed to get in better shape. But the breaks she had to take after the first flight of stairs grew longer.

In spring 2007, her doctor ordered a CT scan and, concerned, sent her to a MeritCare pulmonologist. He examined her CT scan – her lungs pocked by cysts like honeycomb, down to 50 percent of their function – and sprung to action. He lined up oxygen tanks and an appointment at Mayo.

Bergo had lymphangioleio-myomatosis, a progressive disease that strikes women in the prime of their lives. It unleashes abnormal muscle cells on patients’ lung, where they form cysts and bore holes in healthy tissue.

The pulmonologist told her there’s no cure, and Bergo’s illness was too far along to enroll in a trial for promising new medication. She would likely need a lung transplant.

“Here’s me, 36, single and looking, wanting to have children, barely two years into my dream job and thinking my asthma is getting worse,” she recalled.

Bergo spent that Friday crying. She was one of only 1,500 women diagnosed with the disease. Experts believe as many as 250,000 go undiagnosed or, like Bergo, misdiagnosed, blithely planning out the rest of their lives.

“That first day was devastating,” she said. “That weekend I was in shock. On Monday, I decided I had to fight.”

Holly’s wait

Bergo left her oxygen tank in her car before she visited the apartments of clients, some of whom used oxygen themselves. She hid her illness. She didn’t want it to take the fun out of Jolly Holly.

She joked about her ordeal to friends. Nadine Perkins, Bergo’s nurse coordinator at Mayo, remembers her laughing and snapping pictures of staff when she came in for her transplant evaluation.

“At first I was like, ‘Why me?’ ” Bergo says. “Then I decided, ‘Why not me?’ There’s a reason God is making me go through this.”

But the disease was on the march. Bergo spent Christmas and Valentine’s Day after her diagnosis in the hospital with a collapsed lung. That spring, when she could no longer part with her oxygen for long, she had to come clean to her clients.

In the summer, her parents, Bruce and Roxy, moved to the area to help care for her. In the fall, as taking a shower became a strenuous exertion, she had to concede she couldn’t continue on her job.

“Pieces of her life were slowly being taken away,” Eldredge said. “Breathing is her job right now.”

As Bergo climbed the lung transplant list at Mayo, she retreated into her apartment. With a wheelchair and a change of oxygen tanks needed, she said, “It takes a village to bring me out.”

She keeps her cell phone close by her side. She can get the call from Mayo any day now. She has a bag packed and an arrangement to fly to Rochester, Minn., where she needs to get within hours of receiving the call.

There’s no telling how long the wait is going to be: She needs a donor who shares her petite frame and her rare B positive blood type. Her heart is already breaking for the family of the donor who’ll give her a chance to reclaim her life.

Her lung function is down to 16 percent.

She fears she might not survive the five-hour surgery or that her body will reject her new lungs. She worries that eventually her disease might attack her new lungs. But most of the time, she’s strangely calm. All she has to do is breathe.

In the meantime, her friends have rallied around her. They’ve cut her hair for free, dispatched a massage therapist to her apartment and planned a July 31 dinner and auction at the Fargo Holiday Inn.

“It’s amazing how many people she’s touched,” says Bergo’s friend and former colleague Karen Irey, who called her “a good spiritual picker-upper.” “It’s all coming back to her now in full force.”

Stephen Cassivi, Mayo’s director of lung transplantation, says if a set of lungs becomes available on time, a patient like Bergo can make a real comeback, starting with the most basic activity: “Breathing is one of those primordial acts of life we take for granted, but you really notice it when you have to work at it.”

Bergo looks forward to taking a shower without having to sit down several times, keeping up with her nephews and getting her job back: “I will reinvent myself and be better and pay it forward.”

How to help

To help with Holly Bergo’s medical and living expenses, visit http://www.transplants.org, click on “Patients we help” and type her name in the search box.

“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

URGENT: Your Opportunity to Support Organ Donor Designation and Preservation of Voluntary Contributions in California

I have a friend in California, a lung transplant recipient, who is an ambassador for organ donation awareness there. She asked me to post the following for your consideration and I'm very pleased to do so. Action is required today to show your support for Assembly Bill 1132. Thanks. Merv.

Dear Donate Life Community:

Please help us pass this important legislation in California, which is set for a hearing on Tuesday, June 30!

Donate Life California, administrator of the state-authorized organ and tissue donor registry, is sponsoring Assembly Bill 1132, which would increase organ and tissue donor registration by amending existing law to allow Californians an opportunity to be directed to the Donate Life California webpage to register as donors at the confirmation of page of their annual vehicle registration form.

In addition, the bill would allow the DMV to keep a maximum of 5% of the voluntary contributions made by DMV customers to cover administrative costs not already funded by appropriations from the state’s general fund. As a result, the vast majority of these voluntary contributions would be preserved to fund organ donation education in high school health classes among other essential public health education initiatives

Please personalize the letter at this link and email to donatelifeca.org or fax to 916-880-3510.

Thank you for supporting our lifesaving mission!

Thank you for supporting our lifesaving mission!

Bryan

_______________________

Bryan Stewart
Vice President of Communications, OneLegacy
President, Donate Life California
Chairman, Donate Life Rose Parade Float Committee
221 South Figueroa Street, Suite 500
Los Angeles, CA 90012
(213) 229-5600

(213) 229-5650 direct office
(213) 633-1650 direct fax
(213) 400-8304 cell

“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

Michael Jackson may have died from lung disorder

By Theresa Tanoos eXaminer.com

The author of a biography on Michael Jackson said that the superstar had a potentially fatal lung condition, which left him in desperate need of an emergency transplant operation to save his life. According to Ian Halperin, who completed a book about Jackson’s life late last year, the pop icon suffered from an Alpha-1 antitrypsin deficiency, as well as emphysema and gastrointestinal bleeding.

“He’s had it for years, but it’s gotten worse,” Halperin told In Touch magazine. “He needs a lung transplant, but may be too weak to go through with it.” Halperin also said that the gastrointestinal bleeding was the most problematic part for Jackson, “It could kill him.”

Earlier this year, Jackson was photographed in a wheelchair. Just a few weeks ago, he was seen wearing a mask while receiving walking assistance.

Alpha-1 antitrypsin deficiency is a rare genetic disorder that results in a low level of alpha-1 antitrypsin protein in the blood. The protein acts as a protective shield to block destructive enzymes from essentially chewing up and destroying lung tissue when there is no protective shield. Such destruction is also called emphysema. It is estimated that only 1 in 5,000 to 1 in 10,000 people have this deficiency in the U.S.

The most common symptom of the deficiency is shortness of breath upon exertion. Activities that used to be easy to perform become more difficult, such as walking up a flight of stairs or exercising. This disease can be devastating and is frequently misdiagnosed as Asthma. In severe cases, patients are unable to perform even routine daily activities like getting dressed or taking a shower. Less severe cases involve not being able to run marathons anymore. It all depends on the level of the deficiency and shortness of breath.

In the case of Michael Jackson and other high-level performers, an Alpha-1 antitrypsin deficiency could significantly affect wind power, which is important for sustaining energy while singing and dancing.

For more info go to Fox News.

“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

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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

Canadian Baby at center of transplant drama receives new heart

CTV News

Baby Lillian O'Connor at the Hospital for Sick Children in Toronto.

A tiny baby at the center of a heart transplant drama in Toronto has been given the gift of life.

On Tuesday night baby, Lillian O'Connor underwent surgery and received an infant heart to replace the damaged one she was born with 15 weeks ago.

Lily's plight was first publicized back in April when she was supposed to get a transplant from another very sick little girl, baby Kaylee, but doctors called it off when Kaylee somehow rallied after she was taken off a breathing machine.

Now, Lily has a new heart from a different donor, and her parents Kevin O'Connor and Melanie Bernard, of Prince Edward Island, are forever indebted to the other infant whose death meant that their child would have a longer life.

"Lily has lost another little one who will forever be near and dear to her heart. R.I.P.," Melanie wrote on her Facebook page.

Heart donor two-month-old Kaylee is pictured in this recent family handout photo..

Doctors at the Hospital for Sick Children say Lily's six-hour surgery was a success.

"Lillian is doing very well since receiving a new heart," Dr. Seema Mital, staff transplant cardiologist and associate scientist, said in a news release from the hospital.

"Her successful heart transplant is the result of months of an intensive team effort that involved nurses, intensivists, cardiologists, surgeons, anaesthetists, and many other health-care professionals. The team worked together, first to keep her old heart going for this long, and now, to successfully transplant a new one. While many challenges lie ahead, we are all really pleased at how well she's doing after a long and complex transplant surgery."

It's been a long emotional roller coaster for the Lily's parents, who have been at the hospital almost around the clock since she was born March 9.

Doctors had warned them Lily may be stillborn, as she was suffering from a rare congenital heart defect -- known as truncus arteriosus -- that causes a lack of sufficient oxygen in the blood. But she survived, and held on despite repeated medical emergencies including a staph infection, a collapsed lung and a racing heart.

Lily's mother, a manager with Veterans Affairs, told reporters: "she's got such strength."

At a press conference later Thursday, Lily's parents thanked the people who had supported them over the past few months, including their employers and members of the public.

Hopes were raised, and the story hit the headlines nationwide, when baby Kaylee Vitelli began failing and her parents, hearing about Lily's plight, sought out her family and made the extraordinary offer: Kaylee's heart.

Doctors even prepped for the transplant, but in the end Kaylee's condition improved. So much so she was able to go home.

That meant the agonizing wait continued for Lily and her parents, who knew time was running out.

Doctors told them this week an infant donor heart had become available. Their hopes and prayers had been answered.

As for Baby Kaylee, she was admitted to a hospital in Newmarket, Ont., on Thursday, after running a high fever, a spokesperson for the family said.

With files from The Canadian Press

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

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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

Head of UK Catholics gives Unqualified Endorsement of Organ Donation

Leaders in the Church of England and of the Jewish, Muslim, Sikh and Hindu communities were also canvassed and endorsed 'The Wall of Life' campaign to support organ donation.

By Hilary White LifeSiteNews.com

LONDON, June 24, 2009 (LifeSiteNews.com) - In the face of reported "uncertainty," British Catholics have been assured by their new Archbishop of Westminster, Vincent Nichols, that donating organs is "a true act of generosity."

"I'm going to join the Register and encourage others to do the same," he said.

Nichols was canvassed by BBC News Religious Affairs Correspondent Robert Pigott, who reported this week that Britons are "unsure" what their various religious communities teach about organ donation.

The archbishop has put his support behind the Wall of Life*, an interactive campaign launched by National Health Services (NHS) Blood and Transplant. The campaign aims to promote awareness of and support for organ donation to boost the number of people joining the NHS Organ Donor Register.

Current organ transplant practices, however, have come under heavy criticism from some Catholic ethicists who say that under the widely employed "brain death" criteria, death is frequently actually brought about by the removal of vital organs from living patients.

Dr. Paul Byrne, a neonatologist and clinical professor of paediatrics who has written extensively on the danger of "brain death" criteria in organ transplantation, expressed his misgivings about Archbishop Nichols' endorsement of the National Health Service program. Dr. Byrne, told LifeSiteNews.com (LSN) that he believes the archbishop has not given "sufficient reflection" to a statement by Pope Benedict in 2008 that "individual vital organs cannot be extracted except ex cadavere."

The pope told a Vatican conference on organ donation in November 2008, "The principal criteria of respect for the life of the donator must always prevail so that the extraction of organs be performed only in the case of his/her true death."

Dr. Byrne said, however, that "after true death, 'ex cadavere' vital organs cannot be transplanted," due to the speed with which they decay. This has led to the rise of "brain death" criteria, which Dr. Byrne says creates a false definition of death, so as to allow for the extraction of vital organs before they are rendered unusable by actual death.

At a conference in Rome in February, Dr. Byrne told LSN that one of the biggest obstacles in fighting for the rights of patients threatened with the untimely removal of their vital organs has been the uncritical endorsement of the practice by certain factions in the Catholic Church.

Leaders in the Church of England and of the Jewish, Muslim, Sikh and Hindu communities were also canvassed and endorsed 'The Wall of Life' campaign.

Despite the unqualified support for the program by the recently appointed archbishop of Westminster, Catholics who were looking for the official teaching of their Church might have been surprised to find a more cautious approach in the Catechism of the Catholic Church (CCC).

The CCC is careful to qualify the Church's endorsement of organ transplants, saying that while organ donation can be "a noble and meritorious act," it cannot even be regarded as "morally acceptable" if the donor does not give proper consent, or if the removal of organs causes his "disabling mutilation or death.

* Read more about the Wall of Life and the religious leaders endorsing organ donation at MedicalNewsToday.

“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

Did Steve Jobs’s Money Buy Him A Faster Liver Transplant?

Health.com has published a comprehensive overview of organ transplantation in the U.S. and notes that wealthy people with access to private jets can be listed at multiple centers to increase their chances of receiving an early transplant. Wealthy people who are, in effect, financially “pre-approved” for a liver transplant, can shop around and identify the transplant centers that will give them the best chance of receiving a new organ. Such patients can readily fly to whatever center calls them with a donor organ. Was this how Steve Job's was able to get such a quick transplant? For the full Health.com story click here

BULLETIN: In response to the huge media coverage of Steve Job's transplant, the Organ Procurement and Transplantation Network (OPTN)) has issued the following statement:

"OPTN Statement Regarding Liver Transplant Waiting Times and Allocation

Recent news regarding liver transplantation has raised public questions regarding how donated livers are allocated and potential variation in transplant waiting times. The national Organ Procurement and Transplantation Network (OPTN), operated by United Network for Organ Sharing (UNOS) under federal contract, cannot discuss details of individual transplant candidates subject to federal laws and regulations regarding patient confidentiality. The OPTN can address general questions about policy and process.

Whenever a person known to the public receives a transplant, it is tempting to compare that person's waiting time to national averages. Any comparison of one person's experience to that of thousands of others can be misleading.

Liver waiting time is greatly influenced by a formula that assigns priority for organ offers based on the candidate's risk of dying within three months without a transplant. For candidates 12 or older, this formula is called a MELD score. (Younger candidates are prioritized by a companion system known as PELD).

MELD uses objective calculations of common laboratory tests of liver and kidney function. MELD scores can range from 6 (least urgent) to 40 (most urgent); candidates with a score of 15 or higher are at considerable risk of dying in the short term without a transplant.

OPTN policy prioritizes liver candidates local to the organ donor with a MELD or PELD score of 15 or higher, then those candidates within the region of the donor who have scores of 15 and higher, before any less urgent candidates may be considered.

Of candidates listed in the United States with an initial MELD or PELD score between 19 and 24, half receive a liver transplant within approximately 15 weeks of being listed. Of those listed with an initial MELD or PELD score of 25 or higher, half receive a transplant within 20 days of listing. Candidates with lower MELD/PELD priority may often wait months to years for a transplant opportunity.

Other factors may further affect waiting time, such as whether the candidate is generally compatible or incompatible with many donor offers based on blood type or body size. Waiting time in a given local area may reflect particular characteristics in that area's recipient population that are not common to other areas. The national allocation system cannot and does not make any distinction of candidate priority based on wealth, celebrity or other purely social characteristics.

In recent years, approximately 6,500 liver transplants have been performed annually in the United States. Today more than 15,000 men, women and children continue to await this lifesaving gift. We hope the current attention generated by news reports will remind the public of the continuing need of all transplant candidates, and of the opportunity to end their wait through making a positive commitment to organ donation."

“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

Steve Jobs liver transplant - how did he get it so quickly?

There's been a lot of speculation in the media recently about Apple CEO Steve Jobs secretly receiving a liver transplant in Tennessee. Did he by-pass others on the waiting list? Did he receive special treatment because of his celebrity status? One of the best discussions of this was posted by reporters for the New York Times. To read their story about how patients can get a high position on the transplant waiting list without cheating the system click here.

“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

Heart recipient readies for world games in Australia - needs financial help to get there

I recently did another post about Mike Mazzuocco, a double-lung recipient also from St. Catharines who had his bike stolen in the middle of his training for the transplant games in Australia. Like Jacob Kramer, Mike needs to raise almost $10,000 to get to there. Hopefully this post will help both to realize their dreams.

Posted By PETER DOWNS, STANDARD STAFF, St. Catharines, Ontario

The 13-year-old boy watches intently as his dad tells the story of his son's heart transplant when he was a baby.

"Oh, you're going to cry again," Jacob Kingdon Kramer tells his father, sitting right up against him on a couch in the living room of the family's Vineland home.

Boris Kramer smiles at his son and carries on about the heart from someone else's body that beats in his son's chest.

And when he gets to the part about the joy Jacob and his parents get out of attending the World Transplant Games, the tears well in Kramer's eyes.

"It's still emotional," he says. "It's an amazing experience to see people encourage another person. It's about life. It's about people enjoying each other."

The games also allow the family to get together with hundreds of other families who understand exactly what they've gone through.

Jacob, a Grade 7 student at St. Edward School in Jordan, was born with a condition that wouldn't allow his heart to pump properly. A fraternal twin brother died in the uterus of the same condition. His mother, Jennifer, had an emergency caesarean section five weeks before her due date and Jacob was put on a heart transplant list.

At five months old, he received a heart transplant, but the organ had been damaged by ice during transport. Jacob was then put on the top of the list in North America and three days later received a second transplant.

He will need to take anti-rejection medication for the rest of his life and has battled a number of related medical problems.

But those daily medical issues take a backseat at the games, where everyone involved celebrates the life-saving gift of transplants, Kramer says.

Held every other year, the international event draws close to 2,000 organ recipients of all ages who compete in a variety of sports.

The event aims to raise awareness of the continuing need for organ donation.

"It doesn't really matter how people perform," Kramer says. "At the end, everyone is cheering for that one person to finish. It's amazing."

Two years ago, Jacob competed in the world games in Thailand. He's also participated in national versions of the event, which are held in alternating years.

He's slated to compete in three events -- badminton, ping pong and long jump -- in this summer's world games, which run from Aug. 22-30 near Brisbane, Australia.

The majority of families who participate rely on fundraising to cover their travel expenses.

Jacob and his parents are trying to raise the approximately $9,000 it will cost them to attend the event. They're roughly halfway towards their target.

Jacob's school and other groups have organized fundraisers on the family's behalf to help out.

Donations can also be made online by logging on to www.kramersculptures.com and following the link.

To find out more about the Transplant Games in Australia click here.

“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

recycleMe.org NEW Ontario donor campaign
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

Dartmouth man hoping McCartney tickets draw will aid Nova Scotians awaiting lung transplants

Photo by MATT DUNHAM / AP

By Davene Jeffrey The Chronicle Herald Halifax, Nova Scotia

Trevor Umlah is hoping a pair of Paul McCartney tickets will help Nova Scotians awaiting lung transplants breathe a little easier.

The Dartmouth man’s website is raffling off a pair of VIP tickets to the former Beatle’s concert worth more than $600.

At any time there are about 10 to 12 Nova Scotians living in Toronto waiting to receive a lung transplant, Mr. Umlah said.

"And Toronto is not a cheap place to live," he said.

The double lung recipient was lucky; he only had to wait three weeks before he received his transplant. But his wait, coupled with a three-month recovery, cost about $20,000.

He knows of two Nova Scotia women who have been living in Toronto for the past two years waiting for their transplants.

In his case, he and his wife took leaves from their jobs, but many people waiting for transplants are too ill to work and have to be accompanied by a caregiver. In some cases, that means both breadwinners are out of work, Mr. Umlah said.

Last December, the province announced a new program that helps pay the rent of people who must leave the province to get their transplants.

The initiative was sparked by the plight of Marilyn MacKay of Louisdale, Richmond County. She has been living in Toronto for two years waiting her turn on the transplant list and for suitable organs to be found.

Mr. Umlah said his site raised $1,500 by raffling Neil Young tickets last fall. He also organized a golf tournament which brought in $20,000.

His working on another tournament for this fall, but the location has yet to be determined, he said.

To find out more about the raffle or to buy tickets visit Trevor Umlah’s website.

“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

recycleMe.org NEW Ontario donor campaign
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

Older Kidney Patients May Die on Transplant Waitlist

According to this article, patients over 60 waiting for a kidney transplant have a much higher risk of death while on the wait list than younger patients. The recommendation is to try and find a living donor as an alternative.

By Crystal Phend, Staff Writer, medpageTODAY

SAN FRANCISCO, June 18 -- Nearly half of kidney transplant waitlist patients over age 60 are at risk to die before they receive a deceased-donor organ, researchers found.

Risk of death before acquiring a kidney was even higher for patients age 70 and older, for African Americans, and for diabetics, according to Jesse D. Schold, PhD, of the University of Florida, and colleagues.

These findings provide incentive for older patients to consider living donors as an alternative or to get on the list and navigate the deceased-donor process as quickly as possible, they reported online in the Clinical Journal of the American Society of Nephrology.

Kidney transplant can nearly double the life expectancy of end-stage renal disease patients over age 60. But an increasing gap between supply and demand has produced longer waiting times and increased mortality on the waiting list, the researchers said.

"Expanding waiting times clearly affect all portions of the transplant candidate populations," they said. "However, older and frailer patients may be the most directly affected because of rapid mortality rates before receiving a deceased-donor transplant."

The number of newly listed kidney transplant candidates nearly tripled from 2,367 in 1995 to 6,982 in 2006, the researchers found in an analysis of the Scientific Registry of Transplant Recipients database.

The study included all 54,699 patients age 60 and older when placed on the U.S. waiting list for a single kidney transplant from 1995 to July 2007.

Half of these older candidates were age 60 to 64 at the time of listing, and 79% were on dialysis at the time of listing.

Overall, 61% of the older population received a transplant within five years of going on the list, but the proportion projected to receive a transplant within five years declined during the study period.

For those waitlisted in 2006-2007, Dr. Schold's group projected that 46% would die before receiving a deceased-donor transplant, up from a projected 22% in 1995.

The waiting time for a deceased-donor transplant rose significantly from 1995 to 2007, but the gap between time to transplantation and average survival from waitlisting narrowed during the study period.

However, the projections for the rate of death before receipt of a deceased-donor kidney varied widely within the older population:

• 61% for those with diabetes


• 52% for those older than 70


• 62% for black patients


• 71% for blood type B


• 68% for highly sensitized patients


• 53% for those on dialysis at listing

Where patients lived also made a big difference in projected rate of death before kidney transplantation. The mortality rate ranged from 81% for those in United Network for Organ Sharing region five (Arizona, California, Nevada, New Mexico, and Utah) to just 6% for those in region six (Alaska, Hawaii, Idaho, Montana, Oregon, and Washington).

These factors may help clinicians and patients in decision-making, the researchers said.

"As these results demonstrate, a white candidate with type AB blood in region one [Connecticut, Maine, Massachusetts, New Hampshire, and Rhode Island] is in a very different circumstance than a black candidate listed with type B blood in region five," they noted.

They cautioned, though, that the study was limited by its retrospective, population-based design: its database did not include many factors that ultimately influence patients' prognoses and likelihood of receiving a transplant.

"In this sense, these results provide a general framework that can be used to guide patients and illustrate the importance of various factors, but should not be used exclusively ignoring individual circumstances," they concluded.

The practice of transplantation is rapidly changing, but not in favor of older patients, they noted. In particular, they cited a proposed policy for organ allocation that would give younger patients more rapid access to deceased-donor transplants than older candidates.

Source

The data and analyses reported in this article were supplied by the United Network for Organ Sharing and Arbor Research under contract with the Department of Health and Human Services.

The researchers reported no conflicts of interest.

Primary source: Clinical Journal of the American Society of Nephrology
Source reference:
Schold J, et al "Half of kidney transplant candidates who are older than 60 years now placed on the waiting list will die before receiving a deceased-donor transplant" Clin J Am Soc Nephrol 2009.

“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

Bake sale to help lung transplant patient with expenses

I'm always ready to help promote fundraisers for organ transplant patients who are faced with huge expenses in order to get a life-saving transplant. This article puts the financial burden in perspective.

Lancaster Eagle Gazette

Lancaster, Ohio– Terrie Dean, 56, was diagnosed with severe chronic obstructive pulmonary disease (COPD) in 2005. Her condition has since worsened, and she now constantly depends on an oxygen tank, which limits her mobility. Doctors say her only hope for a second chance at life is a double-lung transplant.

A double-lung transplant costs approximately $650,000, and that is only the beginning. Even with health insurance, Dean faces significant expenses related to her transplant. For the rest of her life, she will require costly follow-up care and anti-rejection medications. Dean’s illness forced her to leave her job as a customer service manager, adding to her financial strain.

It is estimated that in the short term, Dean needs at least $100,000 to cover her medical expenses. Because the transplant will take place 200 miles from her home, she will incur substantial travel and temporary housing expenses as she goes through treatment and recovery.

To help alleviate some of these financial burdens, Dean turned to the National Foundation for Transplants (NFT) for assistance. NFT is a nonprofit organization that helps patients raise funds to pay for transplant-related expenses.

Volunteers are planning a bake sale Saturday, June 20 from 10 a.m. to 4 p.m. to assist Dean with her medical expenses. The bake sale will take place at the Walmart on Memorial Drive in Lancaster. Baked goods available for purchase will range in price from 50 cents to $5. All proceeds will benefit the National Foundation for Transplants (NFT) in honor of Dean.

For more information about the upcoming bake sale, contact Kimberly Persons at kimberly.persons@yahoo.com or 740-652-9107.

To make a tax-deductible donation in honor of Dean, please send a contribution to the NFT Ohio Lung Fund, 5350 Poplar Ave., Suite 430, Memphis, TN 38119. Please be sure to write “in honor of Terrie Dean” on the memo line. Secure donations also can be made online at National Foundation for Transplants. Donors should click on “Patients We Help” to locate Dean.

“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