AMA meeting: Delegates seek to change law on organ donor incentives

From American Medical News:

The proposal would make it legal to conduct ethically designed pilot studies of payments for cadaveric donations.

"As many as 7,000 patients die while on the waiting list, and since 1988, 75,000 have died waiting for a donor organ"

By Kevin B. O'Reilly
Chicago -- With the United Network for Organ Sharing waiting list approaching 100,000, the AMA House of Delegates voted in June to put the prospect of paying organ donors high on its legislative agenda.

Six years ago, the house approved studying benefits and harms of financial incentives for cadaveric organ donation. But even testing the idea on a demonstration basis is illegal under the 1984 National Organ Transplant Act, which bans "valuable consideration" in exchange for organ donation. The change would not apply to living organ donors.

"If there are other ways to increase the supply of transplantable organs and do it in an ethical way ... it is worthwhile to at least study," said AMA Board of Trustees member Joseph P. Annis, MD. "We need to expand the number of donors, and we should look at every ethical way that we can do that."

Alternate delegate Gerald A. Wilson, MD, a Columbia, S.C., general surgeon, said that in his work with the state organ procurement organization, he has encountered families of donors who ask for financial help with burial expenses.

"By law, we're prohibited from doing that," said Dr. Wilson, who introduced the resolution adopted by the house. "We cannot put a price on tissue or human life, but there is a need to see if it's possible to increase the number of organ donors."

As many as 7,000 patients die while on the waiting list, and since 1988, 75,000 have died waiting for a donor organ, according to the resolution.

Since 1981, AMA delegates on multiple occasions have adopted or reaffirmed policy calling for pilot studies of ways to increase organ donation.

One approach is mandated choice, in which individuals are required to say "yes" or "no" to cadaveric organ donation when getting a driver's license or filing tax returns. Another is presumed consent, in which the dead are legally assumed to be donors unless they expressed wishes to the contrary.

Many delegates opposed any form of paying for organs, saying it could lead to exploitation of the poor and drive down donation rates.

"Organ donation is currently based on altruism, and it's a very brittle altruism," said Peter N. Bretan Jr., MD, a Novato, Calif., renal transplant surgeon. "Any perception we give forward that doesn't give the freedom to opt out or allows payment ... will specifically hurt altruism and decrease altruism."

Dr. Bretan said reform efforts should focus on removing financial disincentives, not inducing donation with big-money offers.

But Thomas G. Peters, MD, a Jacksonville, Fla., transplant surgeon, argued that a regulated payment for cadaveric organ donation, similar to the death benefit given to the families of fallen soldiers, is ethically appropriate and could forestall grislier alternatives.

"This is a gratuity from America for service to Americans," Dr. Peters said during committee debate. Pushing again for the resolution on the house floor, he said "circumstances have gotten to the point that the lack of domestic cadaveric organs has driven a move to transplant tourism."

The AMA Council on Legislation will propose language to change federal law in line with the adopted resolution and lobby Congress.

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Transplant patients gather to say thanks

From The Daily Tar Heel in North Carolina:

By: Alyssa Stepusin, Staff Writer

More than 60 liver transplant recipients gathered with their families and friends at the UNC Hospitals Hedrick Building on Saturday to celebrate their lives and honor their organ donors' families.

The eighth annual reunion was organized by the UNC Comprehensive Transplant Center, with liver transplant coordinator Emily Dolleschel leading the festivities.

As more than 200 attendees ate lunch and watched a photo slide show of fellow survivors, transplant recipients recalled their experiences.

Gail Clark, of Pelham, had a double transplant in 1994 because her body rejected the first liver. Clark was diagnosed with hepatitis when she was 26.

Even with her 66th birthday approaching, she's able to do more than ever before.

Deborah Stewart, a resident of Durham who worked at the UNC dental school, waited more than four years for a liver. Stewart's experience has been extensive. She went into a coma, from which she spent months rehabilitating, faced rejection of the liver by her body and recently learned she needed a new kidney.

But she remains positive.

"I wanted to be here to celebrate my life, and celebrate everyone else, whatever kind of transplant they have," Stewart said.

There was a sense of community among the transplant recipients, and noticeable signs of support from others in attendance.

Alexandra Terry, a 17-year-old from Henderson, was accompanied by her parents, four sisters and three friends. Terry was only 11 when her liver began to fail from a rare genetic illness, but she completed the entire transplant process in only 13 days.

Liver failure can stem from a number of illnesses, both genetic or from infection. The liver performs many tasks, including breaking down, creating, altering, storing and regulating various bodily substances.

Anthony Mason, who received a new liver in 2000, spoke at the event about his experiences from the past eight years. Mason frequently speaks to audiences about his transplant and how his life has been altered. Next month he will travel to Pittsburgh, Pa., to compete in the U.S. Transplant Games, an Olympic-style event where transplant recipients can compete in various sports.

As a finale of the meeting, transplant recipients wrote letters to their liver donors and attached them to balloons that they released outside.

UNC Hospitals has performed about 15 liver transplants this year and about 70 last year, Dolleschel said. The Transplant Center holds annual reunions for all types of organ transplant patients.

"It's important for the patients to see that everyone is well," Dolleschel said.

Contact the University Editor at udesk@unc.edu.

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Safety takes priority over savings with generics

From the Tallahassee.com in Florida:

Mary Ellen Ross • My View • June 28, 2008

Times are tough. The cost of living is up, and finances are tight. So it's no surprise that everyone is looking for ways to save money.

One of the biggest targets for cost-cutting is health care. This is evident in Florida's Pharmacy Practice Act, which requires pharmacists to substitute medications prescribed by physicians for lower-cost generic drugs, if available.

This policy may offer immediate savings, but allowing critical treatment decisions to be made without a physician's approval is extremely risky — especially for organ transplant recipients.

Many post-transplant anti-rejection medications require complicated dosing based on specific patient characteristics, such as age, weight, ethnicity and many other factors. Because of these dynamics, consistent blood-level monitoring by a physician is needed to ensure that proper drug absorption is achieved for each patient. When drug substitutions are made, active physician and pharmacist communication is vital to ensure patient safety and treatment success.

Some argue that generic substitutions are chemically equivalent to both innovator (aka, "brand name") drugs and to each other; however, testing to determine chemical equivalence of generic substitutes focuses largely on active ingredients. There are other ingredients in many post-transplant anti-rejection medications that may affect patient response and lead to severe side effects — including infection and organ rejection — which can lead to costly emergency care and hospitalization.

We also must consider that testing for chemical equivalence in generic substitutes is conducted among healthy subjects, so there is no guarantee of therapeutic value because unique patient characteristics and conditions — such as age, weight, ethnicity and other illnesses and medications — can alter a drug's effectiveness.

Physician involvement is vital not only for innovator-to-generic substitutions, but for generic-to-generic substitutions as well. Studies show that ingredients other than the active ingredient in variant formulas of the same medication can impact absorption and alter the patient's blood drug level, requiring close blood-level monitoring.

Consider, for example, the different octane levels of gasoline. Depending on its make, model and year, a car may experience an increase in performance when running on high-octane gasoline. The smallest difference in octane can cause changes in performance and even potentially expensive complications. Consumers who understand these dynamics willingly spend more money for increased performance.

The same understanding must be applied to post-transplant anti-rejection medications. Regular and frequent drug substitutions — done purely to save money — will cost patients and coverage providers more in increased office visits and lab tests. Organ transplant recipients expect and deserve to have their physicians make the final choice on medications and treatment — and physicians' medical judgments and treatment directives should be respected.

A provision of Florida's 2008-09 state budget calls for a study — to be conducted by the Florida Department of Health — to determine whether the Pharmacy Practice Act requirements for drug substitution properly allow for patient safety, physician input and treatment success. The study does not seek to end mandatory generic drug substitutions; rather, it seeks to conduct an evaluation on the effect this measure truly has on safety and savings. It will show how best to meet the needs of all patients, including organ transplant recipients.

Gov. Charlie Crist should be commended for his vision, for his understanding of a complex medical issue and for putting patient safety above financial concerns by signing the state budget with the provision for this study left intact.

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Cash woes hit organ crusade

What I don't understand about this situation is why is Mr. Marcello applying to the Ontario Provincial Government agency for a grant instead of the federal government? His "crusade" has taken him across Canada, not just Ontario. And, as far as Ontario is concerned, where I and hundreds of others, are volunteers for Trillium Gift of Life Network, there is no need for a "grant" because the agency pays all mileage and other expenses as well as providing the materials to support organ donation awareness.

From the Toronto Sun in Canada:

Organizer mortgaged house, then provincial grant didn't come through

A man who is trying to save lives through organ donations may lose his house for the cause.

George Marcello, who has twice received life-saving liver transplants, has dedicated the past 13 years to raising awareness of the need for more Canadians to donate their organs.

In September, he mortgaged his home for more than $50,000 to pay for his sixth and most recent cross-Canada awareness campaign, dubbed SOS 4000 in honour of the more than 4,000 people in Canada currently waiting for an organ transplant.

Marcello is angry that an application for a $100,000 grant he made last year to the Trillium Gift of Life Network -- the publicly funded agency responsible for planning and promoting organ donations in Ontario -- was turned down in March.

"They continue to turn me down and they don't tell me why," he told the Sun.

Premier Dalton McGuinty, who re -ceived the Torch of Life in January during the relay, praised Marcello's hard work.

"They seem to support me in public," he said of the politicians who have spoken about him and the need for more organ donors. "But it turned out to be just a series of photo-ops."

Frank Markel, president and chief executive officer of Trillium Gift of Life Network, said he has a great amount of respect for Marcello and the work he is doing, but his national focus, instead of an Ontario one, may be preventing him from accessing the agency's funds.

"One difference between us is that Mr. Marcello has a national focus. His campaign took him all across the country, whereas our focus is local, to Ontario," Markel said, noting Marcello's application was turned down after "very careful consideration. We do have more requests than we have money."

Currently there are over 4,000 people in Canada waiting for an organ transplant, about half of them in Ontario.

In 2005, McGuinty rejected the idea of "presumed consent," a system used in many European countries that makes everyone an organ donor automatically unless they decided to opt out.

Marcello said Canada has among the lowest organ donation rates in the word. Until that changes, his woes won't keep him from doing what he can to save peoples lives.

"I don't know how I'm going to pay next month's mortgage payments," he said. "I have absolutely nothing in the bank ... any month now my house could go into foreclosure.

"But I wake up every morning knowing someone is going to die because they didn't get an organ in time, and that shouldn't happen," he said.

Markel said he felt sorry for Marcello's financial troubles and the agency would gladly review other funding requests from Marcello, which could be approved provided they followed the agency's criteria.

“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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Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Disclosing organ transplant risks: Now or later?

From NBC.com:

Patients should weigh overall options, not individual risks, ethicists argue

By JoNel Aleccia
Health writer
MSNBC

Patients awaiting organ transplants should decide in advance whether they’re willing to take substandard kidneys, livers and other organs, including those at risk for infectious diseases such as HIV or hepatitis C.

That’s the conclusion of University of Pennsylvania scientists and ethicists who want to overhaul a piecemeal system they say fails to adequately inform some patients of potential problems while allowing others to "cherry-pick" donors, accepting or rejecting specific organs based on certain risk factors at the time of transplant.

“What they think might be based on fear or bias,” said Art Caplan, director of the Center for Bioethics at the university’s school of medicine and co-author of an article in the latest issue of the New England Journal of Medicine.

But a member of the United Network for Organ Sharing, or UNOS, the nation’s clearinghouse for organ allocation, said that while he supports thoughtful consent, he’s seen no evidence that the current system is flawed.

“This proposal is a solution in search of a problem,” said Dr. Benjamin Hippen, a transplant surgeon on the UNOS ethics committee.

The Pennsylvania authors said the issue was highlighted last year by the case of a Chicago man whose transplanted organs infected four people with HIV and hepatitis C. Although the 38-year-old car crash victim did not test positive for HIV at the time of his death, local officials knew the man had engaged in behaviors that raised his risk of infection. Recipients were not informed of the risks at the time of transplant, and at least one patient now plans to sue the transplant agency and the hospital.

Under the current system, warning patients about potential transplant problems is an "unknown and unregulated" practice that varies widely by region, hospital and even surgeon, the authors said.

"Disclosure is basically driven by a particular organ transplant team in a particular place," Caplan noted.

UNOS policy requires kidney patients to decide in advance whether they'll accept organs from "expanded criteria" donors, those who are older or have a history of high blood pressure or diabetes. After the Chicago incident, UNOS added a requirement that recipients be informed if organs come from certain high-risk donors, including those considered at risk for HIV. Read the full report.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Organ recipient says thanks

No matter where you live in the world there's always out-of-pocket expenses involved with an organ transplant and it's heartwarming to see how communities come together to help their fellow citizens in their time of need.

From the Summit Sun in Australia:

By Naomi Davidson
After undergoing a double lung transplant earlier this year Lynda Ludlow was overwhelmed by the support of the community who in the latest fundraising efforts presented her with a cheque for $4000 at a morning tea on Saturday June 14.

Ms Ludlow was diagnosed with a rare heart and lung condition known as Pulmonary Arterial Hypertension (PAH) two and a half years ago. On January 8 she underwent a double lung transplant at St Vincent’s Hospital in Sydney.

A dinner was held at the Dundee hall on April 19 to raise money for Ms Ludlow, to help with costs associated with the transplant. Approximately 80 people attended the evening mainly from the communities of Dundee, Glen Elgin, Deepwater and Red Range. People that Ms Ludlow said she had met over the years.

“It was wonderfully done very professional everything was so beautifully decorated I thought I was walking into a wedding,” she said.

The majority of the money, about $3700 was raised from the dinner with the added $300 from a quilt raffle held before the Dundee dog trials.

“As soon as she saw the amount tears came to her eyes, it was real emotional she said she didn’t expect that much,” one of the organisers, Margaret Sloman said.

“I was very emotional the community spirit was just wonderful I just didn’t think something like this could happen to me and the community have been fantastic to get behind me,” Ms Ludlow said.

“Because I haven’t been working it has put a big dint in my pockets. The money has been a God-send. There were a lot of upfront medical expenses as well as day-to-day living. I hope that I can give back somewhere down the track.”

There have been two previous fundraisers for Ms Ludlow. Colin Say and Co, Ms Ludlow’s employers, held a charity bowls day last December. They raised $1800 to assist with Ms Ludlow’s medical expenses and also as a donation to the Pulmonary Hypertension Association of Australia and the Heart Foundation.

Then earlier this year the Drew family in conjunction with the Glen Innes Motor Sport Club raised $1000 from the auction of a seat in a Holden Gemini in the demolition derby at this year’s Glen Innes Show. $650 was raised from the auction of the driver’s seat and a further $350 from an anonymous donor.

Ms Ludlow’s condition affects just six in one million people and has no cure. PAH is where the blood pressure in the pulmonary artery rises far above the normal levels. At the same time the walls of the arteries become thicker making it difficult to pump blood. Her condition deteriorated towards the end of last year, needing the transplant.

“I’m really good,” Ms Ludlow said. “I’m getting stronger everyday. It’s been a pretty rocky road. I’ve only been home the past six weeks. I was in hospital all that time previous to that.”

Ms Ludlow wishes to encourage the community to become organ donors as there are almost 2000 people in Australia on organ transplant waiting lists at any given time, with some dying while they are waiting, according to the Medicare Australia website. To register as an organ donor visit Medicare Australia.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Although this story is about raising organ donation awareness through the transplant games it's also about the positive steps the State of New Jersey has taken by passing a "Hero's Act" bill that now requires drivers to select 'yes' or 'no' regarding being an organ donor. The act will also require mandatory organ donation and transplant education in schools. Hats off for the New Jersey Assembly!

From CBS3.com:

By Cydney Long
ATLANTIC CITY, N.J. (CBS 3) ―
The U.S. Transplant Games torch was carried through Atlantic City in the "Run For Life" Relay Friday.

The torch carrier was seven-year-old Erin Brenner, who received a life-saving liver transplant when she was just 10-months-old.

"Without organ donation and without those parents saying yes, I would be spending my Saturday morning at a gravesite instead of playing softball or soccer," said Erin's mother, Irene Brenner.

The torch was passed to raise awareness about the importance and need for organ donations.

Dianne Bottino was greeted by cheers at the finish line. Her husband died at 42 after waiting 10 months for an organ donation.

"Everything was in place for Joe to get his transplant, but there were no donors. In the end, Joe's life rested on a gift and that gift never came," Bottino said.

The New Jersey Assembly passed the "Hero's Act" bill Monday which now requires drivers to select 'yes' or 'no' regarding being an organ donor.

"Everybody who can save a life is a hero, and we all can save a life," said Bottino.

The act will also require mandatory organ donation and transplant education in schools.

"Because he was an organ donor, it just means that he's out there somewhere," said Kathy O'Brien, whose husband donated his organs.

The U.S. Transplant Games flame will begin to burn in Pittsburgh, Pa. in July.

For more info on this year's North American transplant games visit the following links: U.S. Transplant Games 2008 Pittsburgh July 11-16, 2008. Canadian Transplant Games Windsor, ON Aug 5-10, 2008.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Transplant Donor, Recipients, Have Reason to Celebrate

What a terrific idea! An organ transplant picnic organized by a hospital transplant program where medical staff, donors and recipients can have a fun day together. I wish more centers would do this.

From RedOrbit:

By Lauren Lamas, The Daily Item, Sunbury, Pa.

Jun. 21--ELYSBURG -- Alex Ashcroft was ill.

Two years ago, the Long Pond resident was diagnosed as having a rare disease that left him in need of a kidney transplant.

Had it not been for his uncle, Ashcroft would have been one of the nearly 100,000 people in the United States on an organ transplant waiting list.

"I was there when he was diagnosed," uncle Mark Ashcroft, of East Stroudsburg, said Friday, "and I decided I should donate one of mine" to Alex.

The Ashcrofts were among about 600 organ donors, recipients and others who celebrated their health during Geisinger Medical Center's fifth annual transplant program picnic at Knoebels Groves Amusement Resort.

"They're like one big happy family" Trish Quinter, a Geisinger spokeswoman, said of the donors and recipients.

While many of the transplant clinic's doctors and nurses were at the park, "We don't talk business here," said Dr. Chintalapati Varma, director of transplant surgery at Geisinger. Everyone is dressed down and the atmosphere is relaxed, Varma said, adding "People want to come out and have a good time."

It's wonderful to see patients, who were half-dead when they came to the hospital, able to come to the picnic and enjoy themselves and possibly even ride a ride, which they never would have been able to do before, Varma said.

Despite his illness and transplant surgery, Ashcroft, 20, fell only a semester behind at Penn State University, where he is a student.

He also didn't have to endure dialysis.

Two years after Alex's transplant, his relatives remain supportive of one another. For the picnic they wore matching bright green shirts, a color symbolic of organ donor awareness, Alex's uncle said.

Friday was the second Geisinger picnic attended by Ashcroft and his family.

"It's important to get to meet other people who are going through the same thing," Ashcroft said, "so you know you're not alone."

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

In Filipino organ trade, poor sell kidneys for quick buck

It seems that no matter what governments's do to prevent the illicit trade in organ donation, money and greed continue to find ways to circumvent the rules. And it's not the donors that are making the money; It's the brokers and doctors who are pocketing most it.

From MonstersandCritics.com:

Manila - Nilda Reyes winced as she lifted a chair to give to a customer in her small neighbourhood store that is also her home in Manila's slum district of Tondo.

The widowed 36-year-old mother of two admitted that she still feels pain from her side, almost five months since she donated one of her kidneys to an unknown recipient.

But for Reyes, it was all worth it.

"I don't feel pain all the time,' she said as she showed her scar that stretches from her navel to her back. "And when I do, it's very tolerable anyway. The inconvenience is a small thing compared to what I got in return for donating my kidney."

For her donation, Reyes received a "package of gratuity" that included 100,000 pesos (2,270 dollars) in cash, livelihood assistance of up to 75,000 pesos, a life insurance worth 100,000 pesos and a 10-year health care plan that also covers her family.

Using the money she received, Reyes put up her neighbourhood store and was preparing to open an eatery in another location.

"Of course, I also wanted to help those who are sick,' she said. 'But money was the biggest factor in my donation."

With millions of Filipinos living on less than 1 dollar a day, the Philippines has become one of the world's 'hotspots' for organ harvesting with foreign recipients paying as much as 30,000 dollars for new kidneys.

Due to high demand, illegal brokers prey on poor Filipinos who are forced to sell their kidneys and other organs for fast cash.

In Tondo's Baseco area, where hundreds of male residents have already sold their kidneys in the black market, many more are willing to make the risky deal for the cash.

"My wife and I decided it's our only option now," said a 28-year-old house painter, who was waiting for word from a broker about the sale of one of his kidneys. "We really need the money, I don't have a stable job and my wife earns very little doing laundry."

The father of three admitted he feared the consequences to his health, adding, "We haven't told our children because they might object. But I will be assuring their future with this deal. I can give them a better future."

But not all donors get a happy ending like Reyes, who gave up her kidney under a government organ donation programme that aims to ensure that donors also get proper health care before and after the operation.

In a study by the Philippine Society of Nephrology (PSN) of a cluster of donors in a province southeast of Manila, many of those who sold their kidneys were found to be suffering from various medical problems, such as hypertension and above-normal creatinine levels.

In one case, a 50-year-old man died from a heart attack just a few months after he sold his kidney for 110,000 pesos.

The PSN noted that while foreign recipients pay a huge amount for new kidneys, most of the money is pocketed by brokers, including doctors, who find the donors and convince them to donate. Donors only receive about 3,000 dollars for a kidney.

In 2007, a total of 1,046 kidney transplants were conducted in the Philippines, up from 690 in 2006, according to the Philippine Renal Registry.

More than 50 per cent of the recipients were foreigners in 2007, violating a 10-per-cent cap on the number of transplants to foreign recipients that was imposed in 2003. More than 80 per cent of the donors were not related to the recipients.

In March, the Department of Health issued new guidelines banning all organ transplants to foreigners in a bid to curb the thriving black market in the trade of organs in the country.

Health Secretary Francisco Duque acknowledged that the ban could lead to more illegal organ sales, but expressed confidence that the move was a necessary step towards curbing the illicit trade.

"This should not be the only step we take," he said. "We need strict enforcement of law and I'm sure that will lessen if not stop the illegal peddling of human organs."

But just two months after the ban was imposed, the Department of Health came under fire when its National Transplant and Ethics Committee issued exemptions for nine Israeli patients to undergo kidney transplants in the Philippines.

Duque said the exemption was given for "humanitarian reasons."

The PSN warned the exemption was setting a bad precedent, while Social Welfare Secretary Esperanza Cabral chided health officials for allowing the foreigners to again prey on poor Filipinos.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Pay it Forward: Organ Donation!

From WPTV in Florida:

BACKGROUND: Right now, there are nearly 100,000 people in the United States waiting for an organ transplant. Waiting for an organ can be long and agonizing for many patients. Some people wait as long as eight to 10 years for a transplant. Blood types must match and doctors need to make sure the recipient won't reject the donor organ. There are several organs that can be donated for transplantation. These include the heart, kidneys, liver, lungs, pancreas and small intestine. Depending on the type needed, organs can be transplanted from a living or deceased donor.

PLASMAPHERESIS: Plasmapheresis is the removal, treatment and return of the components of blood plasma from blood in circulation. It is a technology used to remove all of the components of blood plasma that may attack a mismatched organ. For example, the technology was used on Anthony Waters at University Hospital in Cincinnati. Waters needed a liver transplant. With just 72 hours left to live, one became available, but it didn't match. After using plasmapheresis, Waters' body accepted the organ.

LIVING DONATIONS: There are currently not enough organs donated by deceased donors to meet all the needs of patients waiting for an organ transplant. Over the last few years, transplant surgeons throughout the country have developed new techniques and procedures to save more patients' lives through living donor transplants. It is now possible for living humans to donate a kidney, a portion of their liver, a portion of their lung, and in some rare instances, a portion of their pancreas. Living donor transplants can be better for certain patients. For example, kidneys from a living donor last about five years longer than those from a deceased donor.

PAIRED DONATION: Paired donation provides a solution for patients whose donors do not have the right blood type or are incompatible. A transplant candidate and his incompatible volunteer donor are matched with another pair. The intended recipient of each donor is incompatible with the intended donor in the arrangement but compatible with the other donor. It's basically like a kidney "swap." If you are in this situation, you and your volunteer donor can participate in a paired donation program. Your transplant program can register you and your kidney donor in a paired donation program. "What makes the program so successful is having a larger pool of potential donors," Tom Chin, M.D., a transplant surgeon at Florida Hospital in Orlando, Fla., told Ivanhoe.

For More Information, Contact:
Florida Hospital Transplant Center
Orlando, FL
(407) 303-2474
WEB: FH 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
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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Senior Lookout: More should consider organ donation

The need for organ donors is urgent. This article notes that not enough people are saying "yes" to organ donation when renewing their driver's licenses. In Ontario where I live, someone dies every 3 days while on the waiting list for an organ transplant. Anne Springer writes a compelling story here and we need more people like her to help spread the word.

From the Gloucester Daily Times in Massachusetts:

By Anne Springer
Special to the Times

It's a simple question that's posed to every Massachusetts driver each time they renew a driver's license. "Would you like to be an organ donor?"

Not enough say yes.

In the United States, nearly 85,000 people are waiting for an organ transplant that could save their lives. That statistic, however, does not include thousands more people who are not yet "sick enough" to have been listed on a formal waiting list. Because of the lack of availability of organs, many of those people will never attain a score that would even place them on a waiting list, and will die before they ever get a chance for an organ, perhaps because they were too sick by the time they met all criteria to survive the operation, or because some complication of their illness took them.

Getting an organ is not a simple case of being taken in some kind of order, although sometimes children are assigned extra points in the process.

This, from The Gift of a Lifetime web page, should help people understand what the process consists of: "Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word 'list' is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor's blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the 'list,' is different each time."

Also, depending on a patient's changing status, certain medical scores may place them higher or lower in rank even from one day to the next.

There are many myths surrounding organ donation. Some people fear that their bodies would be mutilated to obtain the organs, which is not the case. A donor is treated with the utmost respect, and the procedures are carried out with the same skills as are used with any surgery.

Some people believe that their religion might interfere, but all major religions in the United States support organ donation. Some people fear that hospitals or doctors might want to hasten their death to provide life for someone else. That is never the case. All efforts are made to save victims before organ donation is considered.

Others fear that their families would be offended or even prevent the donation. In Massachusetts, family permission is not needed for someone to become an organ donor. If you sign a donor card or have the information placed on your driver's license, your wishes are honored.

Considering that there are, on average, more than 36,000 motor vehicle deaths each year in the United States, it's hard for those families who are waiting for a loved one to get the gift of life to see many of those organs being lost. When you hear from donor families, often the one thing they are most grateful for is that their loved one saved another person's life.

It's true that not everyone can donate, but that's usually because of an illness or condition that might affect a recipient. And everyone can support organ donation by giving to charities that support recipients – after-care, for example, is expensive and must be maintained for life.

Today, when you are busy living life, greeting your co-workers, hugging a child, preparing for a birthday party, or making an ice tea for your husband out mowing the lawn, some of us are going about those daily activities, too, but always with the knowledge that our loved one is waiting and may not have enough time.

I am one of those people. My fiancé is waiting for a liver that he may never get. If everyone were to sign a donor card today, his odds would go up, and so, too, would the odds of every man, woman, and child who is in need of a gift of life.

To learn more about organ donation, please visit OrganDonor.gov or the New England Organ Bank site at New England Organ Bank. There you can request an organ donation card and not have to wait until your next license renewal.

Please, for those who are waiting, do it today.

Anne Springer is the public relations director of SeniorCare Inc., which serves Beverly, Essex, Gloucester, Hamilton, Ipswich, Manchester, Rockport, Topsfield and Wenham. Its mission is to provide and coordinate services to elders, enabling them to live independently and remain part of their community.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Michayla receives liver transplant

Lebanon's Michayla Nelson and her mom, Rachel, make a "pinky promise" in this photo taken in May. Photo: CONNIE ESH / The Wilson Post

From The Wilson Post in Tennessee:

By JENNIFER HORTON
A Lebanon (Tenn) girl in need of a liver transplant received it on Tuesday and is doing well after surgery, her aunt said Wednesday morning.

Michayla Nelson, who completed first grade this past year at Southside Elementary School, was diagnosed with liver cancer at 6 months old. Although chemotherapy stopped the cancer, she needed a new liver.

Her mother, Rachel, told The Wilson Post in an article published in the May 21 edition, that approximately 70 percent of the child’s liver was surgically removed and doctors thought the remaining 30 percent would regenerate as it usually does.However, Michayla’s liver instead developed cirrhosis.

Valerie Dearsman, Michayla’s aunt, called The Post on Wednesday to report that she was doing well after the surgery that began about 5 p.m., Tuesday, and ended around 9:20 p.m.

“The doctors came down with big smiles on their faces,” she said.

Valerie said Rachel received a call from someone at the Monroe Carell Jr. Children’s Hospital at Vanderbilt at 9 a.m., Tuesday, telling her a donor had been found and to be at the hospital by noon.

Michayla began getting ready for the operation by 4 and was taken to surgery at 4:20 p.m. The operation began at 5.

The doctors said there were no complications and the transplant procedure was “perfect,” Valerie said. She added that before Michayla was sewn up, doctors said the liver had already started to work on its own.

Michayla was taken to recovery. By 11 Tuesday night, Valerie said, she was awake and alert and could respond by shaking her head.

All of her drainage tubes and breathing tube have also been removed. “She’s a trooper,” Valerie said.

Doctors and nurses are keeping her comfortable as she continues to recover from her surgery. She is in the critical care unit at Children’s Hospital.

Valerie said doctors said the first 48 hours are usually and up-and-down period for patients as their systems’ stabilize, but so far she Michayla is doing well. She is expected to be in the hospital three to four weeks.

“It was amazing yesterday,” Valerie said, noting everyone had been wondering how they would react when the operation finally happened.

She said family members were excited and happy that everything had gone so well.
“It was a gift, a blessing,” she added. For details on fund raisers to help with the family's expenses Read the full article.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Liver Transplants Give Hope of Healthy Life to Hartselle Man

From RedOrbit.com:

By Patrice Stewart, The Decatur Daily, Alabama.

The call often comes in the middle of the night.

But it's a call you've been wishing for and waiting for, and time is critical.

You head to the hospital, knowing that somewhere a doctor is retrieving an organ that may soon put you back on the road to a healthy life.

Wayne and Betty Hicks of Hartselle remember the phone call that awakened them at 10:30 p.m. Feb. 17, a Sunday. Sleep was replaced by anticipation, and they headed for UAB Hospital long before the designated 7 a.m. time to report for his transplant.

The Hicks family members are big believers in organ donation, because you never know when you are going to need a transplant -- or two.

Wayne recalled a T-shirt he saw at the hospital: "Don't take your organs to heaven -- heaven knows they're needed here."

"I have always believed in organ donation," said daughter Laura Collins. "I believe that if the Lord takes me, someone else is welcome to anything that can help them."

"There is such as great need for donated organs," said Betty, who also has had her driver license marked for organ donation. "Those helicopters come and go 24/7 at UAB. And there's such a great change after people get these donated organs."

She spent enough time at UAB while her husband was getting his two liver transplants to note a lot of these changes.

"You can see them walking the halls and getting their color back. It's a whole new life," she said. "It's amazing what the doctors can do now."

Hicks has witnessed much of what modern medicine can do with a closer vantage point than he might have cared for.

"They can do some amazing things, but there are a lot of potential problems that can pop up," he said. "But they do a lot of liver transplants at UAB, and their survival success rate is the best in the country. And Dr. Steve Bynon and Dr. Devin Eckhoff and the others are top-notch people."

Wayne said his surgery took only 31/2 hours, while he was told that years ago it required 11 hours and three months in the hospital. He spent about 45 days there for two transplant surgeries, an unusual situation.

It has been 30 years since he began having swelling and arthritis-type symptoms and ended up at UAB with elevated liver enzymes. The diagnosis was primary biliary cirrhosis, a chronic inflammation of the liver.

"They said they didn't know what caused it, but it wasn't drinking or drug use," Wayne said. They told him it was a slowly progressing disease that could eventually lead to lesions that could turn into malignant tumors on the liver and wanted him to come for an annual check, which he has done since 1980.

Last August they found some lesions, which later CAT scans showed were growing, and he was placed on the transplant list in November. Later on, he was moved higher on the list as his condition worsened.

They were ready when the call came Feb. 17, and the family was delighted to see how well he did immediately after the first transplant. He came home within two weeks of the transplant, but then he began running high fevers and twice had to go back to UAB.

The second time ended up as a 32-day stay, because a blood clot had blocked nutrients and oxygen to his new liver, and a second transplant was done April 5. He had more complications after that and stayed in Birmingham nearly a month after the second transplant.

And during his time in the hospital, his daughter was sent to UAB after fainting from dehydration and morning sickness. His wife had to run back and fourth from the husband on the eighth floor to the daughter on the fourth floor.

"But finally I was able to put on a mask and walk down the hall to see Laura," Hicks recalled.

He was quite weak after two such surgeries so close together, but he has slowly been getting his strength back and trying to walk and get some exercise.

"It's a delicate balance," said Hicks, who will be on anti-rejection drugs the rest of his life but is already enjoying golf and some normal activities again.

"It breaks your heart to see the condition some of those people at UAB are in, with nothing available for them," said Betty. "God does answer prayers. Most people are blessed to receive one transplant, and to have a second opportunity ... this was meant to be."

As the Alabama Organ Center at UAB suggests, Wayne has written a thank-you note to the family of his liver donor, and they might eventually make contact through the center. Meanwhile, the Hicks family remembers them daily.

"I don't know who they are or where they are, but we have prayed for them," Wayne 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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Immune Molecule That Plays A Powerful Role In Avoiding Organ Rejection Identified

This research may some day result in physicians being able to identify which transplant patients require little, if any, immune suppression.

From Science Daily:

When a mouse's immune system is deciding whether to reject a skin graft, one powerful member of a molecular family designed to provoke such a response can effectively reduce the visibility of the mouse's own cells and help the graft survive, researchers say.

"This is a molecule with huge potential to regulate immune response," Dr. Anatolij Horuzsko, reproductive immunologist at the Medical College of Georgia Center for Molecular Chaperone/Radiobiology and Cancer Virology, says of HLA-G dimer.

Dimer appears to be the most powerful among several known forms of HLA-G at inhibiting the immune response, researchers have found. Fetuses use this natural mechanism to hide from the mother's immune system and it's at work in some transplant patients as well.

Now that the scientists know which HLA-G is best at down-regulating the immune response and how it works, they believe the molecule's action can be augmented in people with organ transplants and autoimmune disease and turned down to help fight a tumor. Measuring endogenous levels of HLA-G dimer may also help physicians identify which transplant patients require little, if any, immune suppression. Read the complete article.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Oldest organ donor's grief at son's freak death

From the Telegraph in the UK:

Britain's oldest surviving female organ donor has spoken of her grief after the son whose life she saved two months ago with a kidney swap died in a freak accident.

Christine Wright, 81, sacrificed her life to save her son David, 51.

But a routine trip to the supermarket on Tuesday turned to tragedy when David tripped returning a trolley and fractured his hip.

He underwent surgery the following morning but is understood to have suffered a heart attack, caused by a blood clot, in the post operative recovery room.

Mrs Wright, of Stone, Staffs, said the accident was not connected in any way to the transplant, which took place on April 4.

She urged the public to become organ donors as her son, who was dependent on a dialysis machine, had been a "changed man" after the operation.

"It's something that any mother would do if they could. I am sure they would.

"It was heartbreaking seeing his health go down these last couple of years. I'd have done anything to help him.

"I was given all the warnings, but I was determined to try and give him his life back."

After the transplant Mr Wright, a computer expert from Meir, Staffs, had said: 'It's a completely fresh lease of life. We are no longer tied to machines.

"I love my mum - always have done and always will do. She knew the risks were there, but she's done this for me and I can't thank her enough."

Mr Wright, who lost both his legs in the mid-90s after contracting MRSA, had diabetes since the age of 12, but was keen to encourage others to undergo transplants and raised money for local hospitals.

Hospital notes between 2000 and 2004 showed failing kidneys, but it was not until 2004, when he was being treated for pneumonia, that David was told he had end user kidney failure.

Just over two years ago he was accepted on to the transplant list and it was at that point that his mother volunteered to become the donor.

David said that he had felt "marvellous" since his four-and-a-half hour operation at Birmingham's Queen Elizabeth hospital.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Surgeon: organ trade should be legalized

I'm posting this full, lengthy article here because it provides an excellent discussion, pro and con, on the ethics of compensating organ donors as a way to thwart the illicit trade in organs around the world.

From The Independent in the UK:

"A national survey by surgeons at Queen Elizabeth Hospital in Birmingham in 2002 discovered 29 patients who had bought kidneys, half of which failed. A third of the patients died"

By Jeremy Laurance, Health Editor
One of Britain's leading transplant surgeons calls today for the illicit international market in donor organs to be legalized and brought under the control of governments.

Professor Maqsood Noorani, who has witnessed the harm done by transplant tourism, said there was a worldwide shortage of organs which was being exploited by unscrupulous operators, who were putting donors and recipients at risk.

Living donors in poor countries such as Pakistan, where he has worked, needed compensation for their organs and it should be the responsibility of the government to provide it rather than leaving it to the market, Professor Noorani said.

His remarks will reignite the debate about the ethics of paying for organs and the need for regulation of the burgeoning market. An estimated 40,000 patients are waiting for a transplant in western Europe, more than 6,000 of them in the UK. Fifteen to 30 per cent will die on the waiting list.

Writing in today's British Medical Journal, which includes a debate on the ethics of paying donors, Professor Noorani, a former transplant surgeon at the Barts and London NHS Trust, says his first-hand experience of trying to save the lives of British patients who suffered complications after travelling to Pakistan and buying a kidney from a live donor had convinced him of the need for government action.

"In the past few years, transplant tourism has become a lucrative business in Lahore, Rawalpindi and Islamabad. Private hospitals shamelessly advertise their services in newspapers and on the internet. Taxi drivers and touts know the addresses of all the transplant hospitals and brokers busily scavenge for desperate, poor people to meet the constantly increasing demand for kidneys by foreigners," he says.

Banning the trade is not an option, he adds, and switching to a system of cadaveric donation (after death) might encourage a black market with donors being killed for their organs. Instead, he says, Pakistan should establish an authority, jointly with the private sector, to encourage live donations. "This would provide adequate compensation and incentives to donors and would avoid the exploitation of [them]," he writes.

Speaking to The Independent, Professor Noorani said: "Everyone benefits from transplant surgery except the donor. The donor is never appreciated. Live donors are heroes – they deserve a medal. One cannot pay compensation to donors in the UK – that would tarnish the whole process. But in Pakistan there is exploitation because people are poor. Money is the driving force behind transplant tourism and the Government should come forward to control it."

He said he favoured rewarding donors in kind, with offers of accommodation or education for their children rather than cash. Other countries, including Iran and Saudi Arabia, also compensated organ donors, he said.

The trade in organs is growing around the world, with international crime syndicates cashing in on the shortage and the high profits to be made. Patients from the UK who have bought organs have mostly travelled to India and Pakistan to buy replacement kidneys. A national survey by surgeons at Queen Elizabeth Hospital in Birmingham in 2002 discovered 29 patients who had bought kidneys, half of which failed. A third of the patients died.

Demands for the trade to be legalized have been made before. Professor Nadey Hakim, a transplant surgeon at St Mary's Hospital, London, said in 2005 that the black market in organs could no longer be ignored and the risks of not acting now outweighed the dangers of legalizing it.

Should we pay donors to increase the supply of organs?

YES

Arthur Matas, professor of surgery, University of Minnesota
"Today’s biggest problem in kidney transplantation is the shortage of organs. Each year more patients are placed on the waiting list for a deceased donor transplant than there are available organs. Each year the waiting list gets longer.

A regulated system would provide strict control and limit harm. It would include payment made by the government, allocation of kidneys [by predefined criteria] so that every candidate has an opportunity for a transplant, full donor evaluation, long-term follow-up and treatment of the donor with dignity and appreciation for providing a life-saving gift. Compensation for living donors will increase the number of transplants and decrease death and suffering on dialysis. No other alternative to compensation will provide a sufficient numbers of kidneys.

I believe we should advocate a change in the law to allow a trial of regulated compensation for living donors to increase the supply of organs and protect the health and dignity of waiting patients."

NO

Jeremy Chapman, professor of transplant research, University of Sydney
"Transplantation is threatened by the daily global carnage brought about by paying for organs. Sale of organs is advocated by the rich as a human freedom, but this right is exclusively exercised by the poor.

Selling organs does not help people lift themselves from destitution. In the bazaars of India and Pakistan, people sell kidneys to pay off debts, but then average family incomes decline by more than a third, more live below the poverty line and 86 per cent report deterioration in their health.

Organ sales distort the vendor country. Sales of kidneys and livers boomed in China. Executions also boomed and were measured with precision since each execution meant one liver transplant.

Organ sales also destroy donation. In countries where paid organ transplants occur, there is little or no donation. In countries where many transplant recipients go overseas, domestic programs are underfunded and failing.

Source: British Medical Journal.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Organ transplant athletes head to Pittsburgh to win gold

"The event promises to be the world's largest-ever gathering of transplant recipients"

From the Honolulu Advertiser:

By Stephanie Montgomery
Reader Submitted
After racking up countless hours at the gym, on the track and in the pool, 21 athletes, living donors, donor families, and team supporters from Oahu will travel to Pittsburgh, Pennsylvania, for nearly a week of fierce athletic competition at the National Kidney Foundation 2008 U.S. Transplant Games, sponsored by Novartis Pharmaceuticals Corporation.

The Games are an Olympic-style competition for those who have received life-saving organ transplants of every type, including kidney, liver, heart, lung, pancreas and bone marrow. The six-day event will be held July 11-16 in Pittsburgh.

Team Hawaii is one of 50 state and regional teams competing in the 2008 U.S. Transplant Games, totaling more than 6,000 participants. The event promises to be the world's largest-ever gathering of transplant recipients. Team Hawaii has registered two track and field participants, two swimmers, two bowlers, two tennis players, a golfer and a racquet ball player. The athletes are proudly representing the State of Hawaii and hope to bring home gold, silver and bronze medals in all of their sporting events.

The Games visually demonstrate the success of transplantation and call attention to the dramatic national organ shortage. Currently there are 100,000 Americans on the national transplant waiting list for every type of life-saving organ transplant.

Nearly 400 people in Hawaii are awaiting transplants and close to 90 percent are in need of a kidney. Sadly, approximately 12 people in Hawaii die each year, while waiting for an organ transplant, and the number of people in need continues to grow each year.

By participating in the Games, Team Hawaii hopes to help draw attention of the critical need for increased donation in this country.

For more information about Team Hawaii or to receive a free organ donor card, contact the National Kidney Foundation of Hawaii at (808) 593-1515 or log onto KidneyHI.org.

For more info on this year's North American transplant games visit the following links: U.S. Transplant Games 2008 Pittsburgh July 11-16, 2008. Canadian Transplant Games Windsor, ON Aug 5-10, 2008.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Competing with new heart

We continue to hear amazing stories about how organ transplantation transforms our lives in so many ways. Nothing is more awe-inspiring than the stories of patients who were once very near death and our now competiitive athletes. The showcase for these remarkable people is the annual transplant games. For more info visit the following links: U.S. Transplant Games 2008 Pittsburgh July 11-16, 2008. Canadian Transplant Games Windsor, ON Aug 5-10, 2008.

Heart transplant recipient Brian Barndt, 40, of Wake Forest, right, competes in the Gary Kirby Triathlon for Cancer Research in Raleigh. He swam 300 yards before handing off to teammate Joe Cabaleiro, 51, of Cary, who also had a heart transplant. PHOTO BY COREY LOWENSTEIN

From The News-Observer in North Carolina:

By Joe Miller
RALEIGH, North Carolina - Joe and Mariella Cabaleiro and Caroline Barndt were reminiscing Saturday over the day they met three years ago in the cafeteria at UNC Hospitals. The discussion started over cookies, and then Mariella Cabaleiro asked, "So ... why are you here?"

Barndt's husband, Brian, was being evaluated to see whether he was healthy enough to undergo a heart transplant. Caroline was terrified. You can't imagine what this is like, she told the couple.

Actually, they could. Joe, trim and fit, had undergone a heart transplant the previous fall. Caroline was stunned.

"You don't look like you've had a transplant," she said. Imagine her reaction when the Cabaleiros told her that within a year of getting his new heart, Joe had ridden 64 miles on his bike. (Two months later he would do 100.)

"Brian's got to meet you," Caroline told Joe.

Brian Barndt was a competitive swimmer at UNC-Wilmington when he began having heart trouble in 1990, between his junior and senior years. Drugs controlled the situation for 10 years; then his heart began declining in earnest. He had a defibrillator implanted in 2001 and open-heart surgery to repair a valve in 2003.

When he met Joe Cabaleiro in July 2005, Barndt was clinging to life. Surviving, not swimming, topped his to-do list. "I can't allow myself to even think about swimming again," he told Cabaleiro.

"But you will," insisted Cabaleiro, who had become an avid volunteer with Carolina Donor Services, counseling folks such as Barndt.

Barndt smiled as the line was repeated Saturday morning. "Can you believe we've gone from the cafeteria to here?" he asked.

By "here" he meant at the finish of Saturday's Gary Kirby Triathlon for Cancer Research, where the two had just finished their second sprint triathlon together -- Cabaleiro biking 12 miles, Barndt swimming 300 yards.

Three hundred yards he couldn't have imagined three years earlier.

Overcoming obstacles

The idea of transplanting organs from one human to another dates to the late 1700s, but it wasn't until Dec. 3, 1967, that a heart from one human, a 24-year-old woman who was struck by a car and declared brain dead, was transplanted into another human, 55-year-old Louis Washkansky, who was suffering from chronic heart disease.

That Washkansky managed to live for 18 days with someone else's heart beating inside him was considered a resounding success. Within the next year, 100 more heart transplants would be performed.

By 1970, though, the number had dropped to 18 because so many patients were dying shortly after surgery. The reason: the human immune system's natural tendency to reject foreign objects.

"They kind of went on a break in the 1970s," UNC heart surgeon Dr. Chris Selzman says of heart transplants. Medical science had figured out the harvesting and the suturing; next it had to learn how to trick the body into accepting an outside organ.

"They finally got a handle on rejection with the development of cyclosporine," Selzman says. The drug is used in transplants to relax the immune system and make the body more receptive to a new organ.

Heart transplants are still considered a treatment of last resort, after drugs and lesser surgical options (bypasses, valve replacements) have been exhausted. Only about 2,000 are done each year.

While there are still complications -- the relaxed immune system, for instance, means organ-transplant recipients are more vulnerable to a variety of viral threats -- a heart transplant not only means the opportunity to keep living, but to keep living with a quality of life unimaginable to Louis Washkansky. Read the full article.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

'Dead' patient comes around as organs are about to be removed

From The Independent in London, UK:

By John Lichfield in Paris
France may have to reconsider its medical definition of death after a heart-attack victim came alive in the operating theatre as doctors were about to remove his organs for transplant.

The patient, whose identity has not been revealed, recovered after a long period in intensive care and is now able to walk and talk.

The 45-year-old man owes his life to the fact that surgeons authorised to remove organs for transplant operations were not immediately available. Under experimental rules adopted in France last year, to make more organ transplants possible, the man had already reached the point where he could be officially regarded as dead. Similar rules – allowing the removal of organs when a patient's heart has stopped and fails to respond to prolonged massage – already apply in several other European countries, including Britain.

The case occurred at the Pitié-Salpêtriere hospital in Paris in January but was not revealed at the time. The organisation that runs state-owned hospitals in the Paris area – Assistance Publique-Hôpitaux de Paris (AP-HP) – referred the case to its ethical committee on transplants. A summary of the committee's debate, which came to no firm conclusion, has now been published on the AP-HP website. "This situation [illustrates] the questions that remain in reanimation ... and what criteria can be used to determine that a reanimation has failed," says the report.

The ethical questions raised are complex, as the committee acknowledges that doctors – and the state – have an obligation to the 13,000 people waiting for transplanted organs in France. Last year 231 of these patients died because organs did not become available. It was for this reason that France introduced experimental rules allowing the removal of organs in nine hospitals from so-called "stopped heart" patients.

The 45-year-old at the centre of the controversy collapsed close to the La Pitié-Salpêtriere hospital. Efforts were made to revive him at the scene, and more elaborate procedures continued at the hospital for 90 minutes. As surgeons were preparing to remove his vital organs, the man began to breathe unaided. His pupils moved and he showed signs of pain. His heart started to beat again. After several weeks during which he was gravely ill, the man can now walk and talk. He has yet to be told that doctors were ready to remove his organs.

Otherdoctors have seen similar incidents, according to the ethics committee report. "During the meeting, other reanimators ... spoke of situations in which a person whom everyone was sure had died in fact survived after reanimation efforts that went on much longer than usual," the report said. "Participants conceded that these were exceptional cases, but ones that were nevertheless seen in the course of a career."

Le Monde said doctors had feared the new transplant rules would confront them with cases of this kind. They believe the existing rules are imprecise and could undermine public support for the removal of organs for transplant. They are pushing for the issue to be discussed as part of a consultation next year on a proposed, new law on medical ethics.

Professor Alain Tenaillon, the organ transplant specialist at the French government's agency of bio-medicine, told Le Monde: "All the specialist literature suggests that anyone whose heart has stopped and has been massaged correctly for more than 30 minutes, is probably brain dead. But we have to accept that there are exceptions.... There are no absolute rules in this area."

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, donatelife.net

United Kingdom, register at NHS 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

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Nova Scotia family raises money for daughter's lung transplant

Carla and Roger Carver hold a photo of their daughter and son-in-law Jessica, 28, and Shawn Deal. Jessica has cystic fibrosis and needs a double lung transplant. Keith Corcoran photo

I personally know many patients from outside Toronto's metropolitan area who have faced the same financial crisis as this lung transplant family. They have no choice but to move to Toronto because Toronto General Hospital is the only center in Eastern Canada (English speaking) that performs lung transplants.
From SouthShoreNow.ca:
NEW GERMANY, Nova Scotia - Fundraisers are taking place in aid of a former Lunenburg County woman who needs a double lung transplant.

Jessica Deal (nee Carver) soon heads to a Toronto hospital for a weeklong assessment to determine if she's a suitable candidate for a double lung transplant.

If the assessment is favorable, she'll need to live in the metropolitan area close to the hospital to wait for a donor, a wait that could take more than a year.

While some costs are covered by health insurance, Ms Deal and her husband, Shawn, who live in Clayton Park in the Halifax Regional Municipality, have little choice but to pay out of pocket for living expenses.

'That's the costly part," said Ms Deal's mother, Carla Carver, mentioning that the Toronto apartment rental will run $1,700 a month.

A benefit breakfast recently took place in Pinehurst. Cold plate dinners were made available June 10 and the New Germany Legion is the host location of a dance June 14. A ticket raffle on a quilt is also in the planning stages.

Ms Deal, the second oldest of four children of Carla and Roger Carver, has the multi-organ disease cystic fibrosis and the condition has taken a toll on her lungs.

"It's just gotten worse over the last couple of years," Mr. Carver said, noticing for some time that his 28-year-old daughter coughs "a little more" than she used to.

Symptoms of cystic fibrosis are usually heard, not seen. Difficulty breathing and a constant cough are commonplace as the lungs and digestive system are the main targets of the fatal disease. Cystic fibrosis blocks most of the absorption of nutrients from food and increases respiratory problems in the lungs.

Ms Deal was diagnosed six months after her birth. The disease is not contagious.

Treatment includes consuming digestive enzymes to help with nutrient absorption and following a strict regime that includes physiotherapy and an aerosol mask.

The Carvers say their daughter, a former New Germany Rural High School female athlete of the year, showed no signs of ill health in the past until earlier this year when pneumonia hospitalized her for six weeks.

"It really didn't hold her down at all," said her mom of her daughter's dealings with the disease. "Nobody would have ever known anything was wrong with her."

Then, on May 4, as the Deals returned from a Florida vacation, an ambulance met the couple at Stanfield International Airport to transport a very ill Jessica to the Queen Elizabeth II Health Sciences Center, where she's been ever since.

Ms Carver said there was talk Ms Deal may be released from hospital soon but will need to be on oxygen. But it's an improvement over a respirator, when her outlook wasn't so good. At 5'7" and 103 pounds, Ms Deal is working to get her strength back.

After some coaxing, she eventually agreed to the double lung transplant.

Lung transplants are considered when a cystic fibrosis patient is in the late stages of the disease and common treatment methods aren't improving quality of life.

Mr. and Ms Deal are on leave from their jobs. Ms Deal works for a recruiting firm, while Mr. Deal is an auto mechanic. The couple have been married four years.

The Carvers have one other daughter and two sons. None of them have cystic fibrosis.

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

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BOY BORN WITH HALF-A-HEART FIGHTS FOR LIFE-SAVING TRANSPLANT

From The Sentinel in the UK:

By George Oliver
A seven-year-old boy born with half a heart is having tests this week to see if he is eligible for a life-saving transplant.

Sam Griffiths is travelling from Birmingham Children's Hospital to Newcastle-upon-Tyne to see if he can be added to the donor list.

His mum Nicola said: "It is unlikely he will leave hospital unless he gets a heart. Otherwise he will stay there and that will be it."

Sam, from Bridge Street, Silverdale, was taken to Birmingham Children's Hospital within hours of being born in October 2000.

Consultants revealed Sam was missing parts of his heart, and what he did have had a hole in the middle.

It meant blood was not getting into his lungs, and he had his first operation at just a day old.

Since then Sam has had five lots of open-heart surgery, taken countless medicines and had a pacemaker fitted.

Nicola, aged 30, added: "His last operation was to get his heart ready for a next-stage operation. But it uncovered how bad his heart function is.

"He is in heart failure now, so there is nothing they can do surgically."

Sam was travelling north today and will stay for three nights as experts decide if he should go onto the transplant list.

Nicola said: "Sam was on the transplant list for six months when he was two, but he perked up with his medication so we took him off it, and we have had a few years where he has had some quality of life. There will have to be something very drastic for us not to get on the list.

"The worst case scenario would be that there is something wrong with his lung pressure, because if there was anything wrong with that it would mean heart and lung surgery, and I don't think that is something we would go for.

"It would be a nightmare scenario.

"Normally Sam is really perky and chatty and takes everything in his stride, but he is really struggling at the moment because he is bored because he cannot do anything."

Grandmother Lynda Bedson says Sam enjoys playing with sisters Lucy, aged five and Bailey, aged nine months, and three-year-old brother Logan.

The 61-year-old, of Lockwood Street, Newcastle, said: "He is such a lovely lad who never complains or moans and just gets on with life.

"He is smashing with his brothers and sisters, and if you looked at him you would not believe there was anything wrong with him."

Sam went to Blackfriars Special School, but is now a pupil at St John's Primary School, Keele, and Nicola thanked everyone there for their support.

St John's headteacher Jill Price said: "Sam is a pleasure to have in school and takes as much of an active part as he can.

"He has lots of friends who are wishing him luck and thinking about him all the time, as are all the people who have supported him in school."

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Government urged to help lung transplant patients with bills

Nova Scotia legislator urges government to give lung transplant patients financial assistance

"You’re literally spending your retirement money trying to make yourself well. I mean they don’t offer any kind of assistance. They don’t pay for your airfare, nothing, nothing, they just wash their hands of it when you become a part of the program."

From the Chronical-Herald in Halifax, Nova Scotia:

LOUISDALE — Nova Scotia families shouldn’t have to suffer financial ruin waiting for out-of-province medical procedures, says a Liberal member of the legislature.

Michel Samson is calling on the province’s ruling Conservatives to provide financial assistance to people like Marilyn MacKay of Louisdale, who’s awaiting a double lung transplant.

MacKay has been living in Ontario since August 2007, and is required to be near her Toronto hospital in case a suitable donor is found. It took a year-and-a-half for MacKay to even be put on a waiting list for surgery.

Along with her husband Ken, the family has already spent about $20,000 for living expenses and air travel. Double lung transplants are not available in Nova Scotia.

"They’ve drained their own personal assets," said Samson. "They’re now left at a point that they have to make a decision as to how much longer she can stay in Toronto before they exhaust their finances."

Samson is requesting a financial assistance program for all Nova Scotians who must leave the province for organ transplants.

The Liberal party wants to see the government create a program similar to one in Newfoundland and Labrador, which provides up to $2,200 per month toward living expenses and covers airline flights so a patient’s spouse can visit.

When reached in Mississauga, Ont., Marilyn MacKay, who will turn 57 on Monday, said she will continue to advocate for assistance until something is changed.

"When you don’t get the lungs you become terminal, so basically we’re under a lot of stress here," said MacKay, who was diagnosed with interstitial lung disease.

"You’re literally spending your retirement money trying to make yourself well. I mean they don’t offer any kind of assistance. They don’t pay for your airfare, nothing, nothing, they just wash their hands of it when you become a part of the program."

The family has been receiving donations from members of the community, including a fundraiser.

“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

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation