Thursday, June 27, 2013

Toronto XVIVO Perfusion System boosts lung donor pool

As we approach the July 1st Canada Day weekend we remember to celebrate the blessings and bounties our Nation has given us. For me its the new life I was given by a lung transplant eleven years ago, thanks to my donor and Dr. Shaf Keshavjee, at Toronto General Hospital. This recent article in The Toronto Star highlights his achievements.

Toronto lung transplant surgeon leading innovations to boost donor organ pool

“I think the impact of this will be changing the 15 per cent world utilization (for donated lungs) to 50 per cent. That is more than tripling the number of lung transplants done around the world,” Keshavjee says. “This came from here and it’s going to impact the world.”

By:  Health, 

The Toronto Star

Toronto surgeon Dr. Shaf Keshavjee’s innovations are transforming how lung transplants are done. He has lead the development of the Toronto XVIVO Perfusion System, which treats and improves high-risk donor lungs so they can be safely used for transplant.

Dr. Shaf Keshavjee, seen in the hall of Toronto General Hospital immediately after he performed a double-lung transplant in February, has received the Order of Ontario for his innovative work in his field.

Dr. Shaf Keshavjee, seen in the hall of Toronto General Hospital immediately after he performed a double-lung transplant in February, has received the Order of Ontario for his innovative work in his field.

Dr. Shaf Keshavjee apologizes as his BlackBerry keeps buzzing. He is receiving emails from the Trillium Gift of Life Network, Ontario’s organ and tissue donation agency.
They are offering him a pair of lungs — organs from an individual whose identity must be kept secret for ethical reasons, and likely the victim of a recent accident, head injury or brain hemorrhage — from some undisclosed location in Canada.
Keshavjee, director of the Lung Transplant Program at Toronto General Hospital, part of the University Health Network, peers closely at the screen of the mobile device. He is looking at an x-ray of the organs. The image is tiny, but to his trained eye, he can tell the organs are less than perfect.
“There is some abnormality because there is some lightness to it,” he says, pointing to a couple of minuscule white dots.
The lungs are the most fragile of all the organs and injuries to this pair may have been sustained during whatever tragedy led to the donor’s brain death. Or after, when resuscitation attempts were made. Or even after that, when the body was kept alive on life support.
Typically, such damaged lungs would not be considered for transplant. Indeed, an average of only 15 per cent of donated lungs end up being used worldwide.
But because of innovations led by Keshavjee, Toronto General is now able to use 40 per cent of the lungs offered. And Keshavjee is working to raise that number.
For his efforts, he was recently recognized with the Order of Ontario and two Queen’s Jubilee medals. His accomplishments are indeed an Ontario success story. His innovations are transforming lung transplant surgery around the world.
Keshavjee types a response on his BlackBerry, telling Trillium he will take the lungs.
“Smartphones have made it a lot easier. I can do this lying in my bed in the middle of the night. And I do,” he says.
So begins the complex process that will ultimately lead to someone who is dying of lung disease getting a transplant.
There are more than 80 Ontarians waiting for either a lung or a heart-lung transplant. About 20 per cent of them will die on the waiting list.
For Keshavjee, who has done about 400 lung transplants, this is just another day at the office.
“I will have a recipient ready tonight at midnight to start fitting the lungs in,” says the 51-year-old transplant surgeon who is now planning to work into the next day.
This is only one of Keshavjee’s jobs. He is also surgeon-in-chief at the University Health Network, a researcher, medical school professor and thoracic surgeon who does elective surgery, mostly on lung cancer patients.
His biggest claim to fame is leading the development of the Toronto XVIVO Perfusion System (ex vivo means outside the body), which treats and improves high-risk donor lungs so they can be safely used for transplant.
A couple of weeks after the initial interview, Keshavjee allows a reporter and photographer to tag along to see how the system works.
A pair of lungs arrives at the hospital in a blue Coleman cooler at 10:30 a.m. on a Monday. They were harvested from an anonymous donor’s body, somewhere in Canada, six hours earlier.
While a family somewhere in Canada grieves for the loss of the donor, a man in his 60s with advanced chronic obstructive pulmonary disease is being prepped for transplant surgery. He’s excited and jittery, too nervous to be interviewed by a reporter.
Besides, it’s difficult to talk. He needs 100 per cent oxygen at all times just to stay alive.
At this point, it’s not certain whether the transplant will even go ahead. The donor lungs are in bad shape, inflamed and full of fluid.
The lungs arrive in operating room 18, the organ regeneration laboratory, on the second floor of the hospital. A team of about six medical professionals is already assembled. They include surgeons, nurses and perfusion specialists who operate the XVIVO system.
There are also research fellows from Hong Kong, Chile, Spain and Brazil. Professionals from every major transplant center around the world have come through the hospital to learn the technique.
The lungs are removed from the cooler and placed into a bucket of ice. A tube is attached to the pulmonary artery, which normally delivers blood to the lung from the heart. Another tube is sewn to a vein that normally drains blood out of the lung.
The organs are then moved to a steel table in the center  of the room atop of which sits the XVIVO device. Also known as “the bubble,” it resembles a glass-domed cake plate.
Here, the lungs are hooked up to a circuit that includes a ventilator and heart-lung machine, which pumps a preservation solution into them. The solution, made of low-potassium dextran, was initially developed by Keshavjee and later perfected by others.
As the lungs are brought back up to body temperature, they are healed with a type of anti-inflammatory therapy, also developed by Keshavjee, which makes them less prone to malfunction.
Like something out of a science fiction novel, the lungs eventually begin inflating and deflating. The disembodied organs are alive, breathing on their own.
“It’s something I wouldn’t have imagined seeing in my lifetime,” says Keshavjee, who still marvels at the accomplishment.
Keshavjee bustles around the hospital while the lungs recover on the XVIVO system. He has a couple of meetings, a clinic with cancer patients and an interview with a candidate for a nurse navigator position.
He continuously checks on the lungs, calling the OR, visiting in person and even checking in via Skype on an iPad.
The XVIVO team updates him with results of ongoing tests. They assess the lungs’ function with blood gases, x-rays and bronchoscopies. They check the resistance to the flow of fluid through the lungs and whether the organs are becoming less stiff.
They also pump them with anti-inflammatory drugs and antibiotics.
The lungs continue to improve and at the four-hour mark, Keshavjee makes the call. The surgery can go ahead.
Another benefit of the XVIVO system is that it allows doctors to know how lungs will function before they are transplanted, thereby reducing the risk of death.
“I already know that the lungs are going to work before I even start the operation. That is transformative. Before, you would find out after,” Keshavjee says.
He continues with his other duties around the hospital, while another operating room is made ready for the transplant surgery and the patient is told the good news.
Seven hours after the lungs arrived at the hospital, the transplant begins.
The room is filled with music from Keshavjee’s iPod: Hedley, Florence and the Machine, Lady Gaga. His 15-year-old daughter’s selection.
In Keshavjee’s tool kit are more than 100 sterilized surgical instruments, including different sizes of clamps, forceps, scissors and what look like wrenches. There are even power tools.
Keshavjee opens the patient’s chest horizontally using an electric sternum saw so that it lifts like the hood of a car.
He removes and replaces the lungs one at a time. When the first one comes out, the signs of disease are apparent. It is bright red with inflammation and black lines run through it.
It takes the surgeon only 45 minutes to sew in each new lung. He expertly sutures them to the patient’s bronchus, pulmonary artery and veins, attaching them to the heart.
Each lung is slowly re-perfused with the patient’s own blood. Within minutes, the thousands of tiny blood vessels in the organs fill.
The right lung is done first. It inflates as it fills for the first time with the transplant patient’s own breath of air.
“When you stop to think about what we are doing, it is pretty amazing,” Keshavjee exclaims.
Before the patient is sewn up, samples of his new lungs are taken for research.
Keshavjee has big plans to take the technology even further by modifying transplanted lungs with gene therapy and stem cell therapy so they that patients don’t need to take anti-rejection drugs. Ultimately, he hopes to be able to build new lungs.
“Can you strip all the cells out of it, keep the skeleton, the scaffold and then take your bone marrow, your stems cells and build a lung that is you?”
Twelve hours after the surgery, the patient is removed from the ventilator. Where he had difficulty breathing with oxygen support before, he is now easily breathing on his own.
The day after the surgery, he is out of his bed and able to eat a meal of clear fluids.
One of the first things that strikes the patient is that he can get through a meal without have to stop for a break to catch his breath.
“It’s just a simple thing, but he can’t recall when he was last able to do that,” Keshavjee says.
Without the transplant and the ability to salvage lungs that were otherwise unusable, there was a more than 50 per cent chance the man would have died within the year.
The Toronto XVIVO Perfusion System has saved this man and has the potential to save many more lives as other countries adopt it. There are plans to use it for other organs, aside from lungs, as well.
“I think the impact of this will be changing the 15 per cent world utilization (for donated lungs) to 50 per cent. That is more than tripling the number of lung transplants done around the world,” Keshavjee says.
“This came from here and it’s going to impact the world.”
In Ontario, you can register your consent to be an organ and tissue donor online at

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Tuesday, June 25, 2013

Utah man gets kidney from second-longest donor chain in history

SALT LAKE CITY, Utah — The second-largest kidney exchange in history happened recently, and the University of Utah was a part of it.
More than 88,000 people are waiting for a kidney transplant, and an average of 12 people die each day while waiting for a donor.
People in need of a kidney donation may find someone willing to donate, but that person may not be a compatible donor. Donor chains pair such couples up with other couples in the same situation to create compatible pairs.
Bolton Collins was forced to put his life on hold after he found out he needed a kidney. He worried he would never find a donor.
“There were a couple times I was in the emergency room in Las Vegas wondering if I was ever going to walk out,” he said. “It was that hard to breathe and to wonder if it was ever going to get better.”
Collins was entered into a national pair donor exchange program. Bruce Garrett, paired kidney exchange coordinator for the University of Utah, said these programs are very helpful.
“These paired donors and paired recipients participate in a large national pool with other paired donors and other paired recipients,” he said. “So, again, our program realized that and thought that this is a great opportunity to get our recipients transplanted.”
Collins joined the chain, and he received a kidney from a living donor in Cleveland. Garret said the exchange was larger than most.
“It’s the second-longest chain in the history of this country,” he said. “The first one was 31 donors and 31 recipients—this was 28 donors and 28 recipients.”
Collins said he appreciates the sacrifices of the people who made getting a kidney possible.
“It’s amazing to be part of that, mainly because it’s so personal to me, and I understand how many people’s lives have been adjusted or made better because of this: 28 people, and it all ripples throughout how many other people have been effected by that,” he said.
The donation chain began on April 30 in Tennessee and ended on June 5 in Ohio. Procedures were performed in 19 different medical centers. Collins said, even though she lives across the country, he hopes to meet his donor one day. Until then, he’s just living life to the fullest.
“What is there to really say? Thank you isn’t sufficient enough,” he said. “So, as I think about it, the best way to be grateful for this gift is to make my life a better life than it was before.”

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

Monday, June 24, 2013

Justin Bieber Meets With Down Syndrome And Liver Transplant Girl

Justin Bieber Meets With Marisa Cox who recently also underwent a life-saving kidney transplant.

By the Gossip Cop

Justin Bieber, who really always makes an effort to reach out to ailing fans, once again made a little girl’s dreams come true.
Before his concert in San Diego on Saturday, the singer met with a young fan named Marisa Cox, who has Down Syndrome and recently underwent a life-saving kidney transplant.

Following his backstage get-together with Marisa — which included her giving The Biebs a kiss, the superstar tweeted a photo of the two of them (above), along with the note, “one of the best parts of the job. nice meeting you Marisa. stay strong for me!”
Marisa’s meeting with The Biebs resulted after her mom and a friend reached out to the local Fox news station and a couple of San Diego deejays, who were able to arrange the visit.
Check out video below of Marisa’s story.
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Thursday, June 20, 2013

Now in Canada - Blood test identifies probability of rejection in heart recipients

MISSISSAUGA, ONTARIO and BRISBANE, CALIFORNIA -- (Marketwired) -- 06/20/13 -- CML HealthCare Inc. (TSX:CLC) (the "Company" or "CML HealthCare"), a leading provider of medical diagnostic services in Canada, and XDx, Inc. ("XDx"), a leading U.S. molecular diagnostics company focused on high clinical impact blood tests for transplantation and autoimmune diseases, today entered into an exclusive licensing agreement that provides CML HealthCare with exclusive rights, initially in Ontario, to AlloMap, XDx's flagship diagnostic blood test used by physicians to identify heart transplant recipients who have a low probability of acute cellular rejection. The agreement also provides the Company with the option to extend the distribution and marketing rights to AlloMap across Canada.
AlloMap has been marketed by XDx in the United States since 2005 and is CLIA certified, FDA cleared and CE marked. It will be available in Ontario in late summer 2013.
"We are very pleased to be the exclusive partner of XDx for commercialization of AlloMap initially in Ontario with an option to extend our relationship to the rest of Canada. Making a high value, patient focused test available to the heart transplant community is another demonstration of our commitment to bring new and innovative clinical diagnostics to Canadians. We are confident that the medical benefits of AlloMap and its success in the United States should lead to a rapid adoption in Canada," said Thomas Wellner, President and CEO, CML HealthCare.
"XDx has been a pioneer in high value, high clinical impact molecular diagnostics in the United States. The agreement reached with CML HealthCare will provide great benefit for heart transplant recipients throughout Canada. With our strong body of peer reviewed clinical evidence--demonstrated through four major clinical studies in the US, Europe and Canada--CML can build on the tremendous efforts XDx have invested in AlloMap. The strengths of CML HealthCare as a leader in clinical diagnostic services in Canada convinced us to grant the exclusive license," said Peter Maag, CEO of XDx.
AlloMap testing will be performed by XDx in its CLIA laboratory in Brisbane, California. There are approximately 165 heart transplants performed annually in Canada. Currently, as part of the overall management of heart transplant patients, multiple invasive heart biopsies are performed, especially during the early years post-transplant. In comparison, the AlloMap Test is a simple, non-invasive blood test.
About AlloMap
AlloMap Molecular Expression Testing is a non-invasive gene expression test used to aid in the identification of heart transplant recipients with stable allograft function who have a low probability of moderate/severe acute cellular rejection at the time of testing in conjunction with standard clinical assessment. AlloMap testing measures the expression levels of 20 genes from a blood sample. The combined expression of these genes is represented as an AlloMap test score. AlloMap is performed in the XDx CLIA-certified laboratory and has been commercially available in the United States since 2005. AlloMap was cleared by the U.S. Food and Drug Administration in 2008 and was CE marked in the European Union in 2011. Use of AlloMap is also included in the International Society for Heart and Lung Transplantation (ISHLT) Practice Guidelines, published in August 2010, the worldwide standard for the care of heart transplant patients.
About XDx, Inc.
Founded in 2000, XDx, Inc. is a molecular diagnostics company based in Brisbane, CA, USA. XDx applies modern genomics technologies to the development of molecular diagnostic assays that translate a patient's immune status into clinically actionable information.
XDx has one marketed product, AlloMap® Molecular Expression Testing, and other products under development. The proprietary molecular expression technology used by XDx to develop AlloMap testing for heart transplant patient management may be applicable to the post-transplant management of recipients of other organs. The application of gene expression testing to other diseases that involve the activity of the immune system, such as autoimmune and chronic inflammatory diseases, is also being explored.

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Tuesday, June 18, 2013

Germany seeks Spanish help on organ transplants

According to Wikipedia, the laws of different countries allow potential donors to permit or refuse donation, or give this choice to relatives. The frequency of donations varies among countries. For example, Germany (16 donors/million) has an opt-in system whereas under Spain's opt-out system it has the highest organ donation rate in the world (34 effective donors per million inhabitants). German officials are to be congratulated for making this effort to help improve their system.

By Steve Tallantyre, The Local, Spain

Top officials and doctors from Germany are in Spain to get help on how to improve the performance and transparency of their organ donation and transplantation system.

The delegation of government officials and doctors from Germany's DSO transplant organization arrive in the wake of a series of scandals involving data manipulation to alter waiting lists in that country, according to online daily Lasprovincias.

The head of Spain's National Transplant Organization (ONT), Rafael Matesanz, explained that when the German government ordered a leading lawyer to review and overhaul organ donation systems, he had contacted Spain to analyze the Spanish model to see which aspects of it could be successfully transplanted.

"They can't change their system overnight but they can adapt many of the concepts that we've developed and try to modify them to help them improve," he said.

"It's important for a country like Germany, which has always operated its transplant system independently, to come to Spain because we are a leader in this area."

The German system is very different to the Spanish because it depends on the cooperation of the various German federal states, the procurement of organs through the DSO and their distribution via a company called Eurotransplant.

In Spain, the ONT is responsible for both the procurement and transplantation of not just organs but also other tissues and cells whereas in Germany these are handled separately by "many different private companies".

The German Ministry of Health is not involved in the process.

"We have urged them to change in this regard," said Matesanz.

He added: "Spain was the first country where the department of health got involved with transplants and, after 25 years of working well it has proven to be effective."

The German delegation have invited Matesanz to visit Berlin to explain the Spanish transplant model to the federal parliament and how it could be adapted to the German healthcare system.

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Saturday, June 15, 2013

Prince Andrew opens new transplant center

by TOM FOOT, Camden New Journal

Prince Andrew, a patron of the NHS Trust, gave his royal seal of approval to The UCL Institute for Immunity and Transplantation. The opening of the institute is the first step in a journey which I hope will end in us being able to repair and replace many damaged organs and cure lifelong conditions including blindness and spinal cord injuries.”

Prince Andrew takes a closer look at the Royal Free Hospital's new transplant centre

Prince Andrew at the UCL Institute for Immunity and Transplantation
Prince Andrew at the UCL Institute for Immunity and Transplantation
Prince Andrew at the UCL Institute for Immunity and Transplantation
Published: 13 June, 2013
THE Duke of York took a peek through a microscope and chatted with patients as he opened a transplant research centre in the Royal Free Hospital.
Prince Andrew, a patron of the NHS Trust, gave his royal seal of approval to The UCL Institute for Immunity and Transplantation.
Experts at the specialist centre in the Pond Street hospital – the first of its kind in the country and one of only five in the world – hope to cure diabetes and develop gene therapy to end long-term drug treatment programmes.
Professor Hans Stauss, director of the institute and a world-renowned expert on tumour immunology, said: “The opening of the institute is the first step in a journey which I hope will end in us being able to repair and replace many damaged organs and cure lifelong conditions including blindness and spinal cord injuries.”
There will be 200 researchers working at the institute when it is finished.
The Royal Free Charity is aiming to raise £47million to complete the second phase of the project by 2017.”
Chris Burghes, chief executive of the Royal Free Charity, said: “I think that of the many high-profile research projects we fund, the Institute of Immunity and Transplantation has the potential to bring the most dramatic benefits for a large number of patients.”
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Friday, June 14, 2013

Device May Increase Availability of Donor Livers for transplant

Investigational Device Prolongs Survival Of Livers for Transplantation

Patients who need a new liver to survive must hope that they are one of the approximately 13,000 liver transplant recipients in the United States and Europe each year. But with 30,000 people on waiting lists, and with only ice keeping livers for transplantation viable for up to 14 hours, the odds are not always in the patients’ favor. Each year, more than 2,000 livers don’t survive the journey to their new home.
A liver 30 seconds after connection to the OrganOx Metra device. Parts of the organ are still cold, while other parts are warm and perfused with red cell solution.

“Preserving organs by cooling them down is far from perfect,” said Peter J. Friend, MD, director of transplantation surgery, Nuffield Department of Surgical Sciences, Oxford Transplant Centre, U.K. “Although cooling the organ on ice slows its metabolism by a factor of 10, the liver continues to metabolize slowly and deteriorates as a result. It’s hard to tell which organs will work and which ones won’t.”

Now, however, Dr. Friend and his colleague Constantin Coussios, PhD, professor of biomedical engineering at the University of Oxford, have devised a novel technology that may be a game changer: A machine that allows the liver to function for up to 24 hours, as though it were still inside a human body.

On March 15, the team of engineers and physicians announced the preliminary success of this machine, which has safely transported livers to two transplant recipients at King’s College Hospital in London.

“The first two cases went very well,” said Dr. Friend. “They weren’t exceptionally high risk, but the machine did what it was supposed to do.”
The liver 5 minutes after connection to the OrganOx Metra, now fully perfused and at physiologic temperature.
Long Time in the Making
In 1994, Drs. Friend and Coussios devised the idea for the technology, but faced several engineering challenges while developing it. The co-inventors needed to create an artificial environment, that could simulate the key functions of the human body, including pumping blood and providing nutrition to the organ. These functions not only had to be automated to make it possible for transplant surgeons around the globe to use the technology, but also small enough for easy transportability.

After 15 years of developing and tweaking the design, Drs. Friend and Coussios have created a technology that appears to meet these requirements. The liver’s main blood vessels are connected to tubes on the machine, which automatically regulate the environment around the liver. The device maintains the liver at body temperature and infuses it with oxygenated red blood cells, nutrition such as glucose and amino acids, and other chemicals to create a physiologic environment that mimics the human body. The liver is not only kept alive, but it continues to produce bile as well.

Additionally, the machine is compact.

“It’s about the size of a supermarket trolley [shopping cart], which means it can go in back of ambulance, small plane or helicopter,” Dr. Friend said. “Size was very important because we knew there was no point in making a machine if it couldn’t fit in the back of a vehicle.”

Notably, the machine also may allow the liver to recover from injuries it sustained during or before removal, Dr. Friend pointed out. This function of the device is particularly important because it could expand the number of viable livers for transplantation. In recent years, the demand for livers has grown, as liver disease has become more common, whereas the quality of donor livers has diminished.
The King’s College Hospital, Oxford University and OrganOx team successfully connects the first human liver for transplantation to the OrganOx Metra device.

“More and more, donors tend to be older, and have a high body mass index or coexisting major health problems,” Dr. Friend noted. “Because of the increasing demand for livers, we are having to use organs we would have once said no to.”

Now with the machine, transplant surgeons can test how well the liver is working during preservation.

“If the liver works on the pump, then we can assume it will work in the recipient,” said Maria B. Majella Doyle, MD, MBA, associate professor of surgery at Washington University School of Medicine, St. Louis, who specializes in liver transplantation. Dr. Doyle was not involved in developing this pump, but she is performing research to develop a different liver pump system, one that also keeps the liver at physiologic temperature.

In April 2008, Drs. Friend and Coussios cofounded a company called OrganOx Ltd., to continue their University of Oxford research. With financial support from the Royal Society and several venture capital funds in the United Kingdom, the company has been working to bring the technology to patients.
Although promising, the device still needs more testing. The U.K. team has begun a pilot trial at King’s College Hospital to test the ability of the machine to transport livers to 20 transplant patients. If the trial is successful, OrganOx then could apply for marketing authority, which would make the device commercially available in Europe.

“If the machine is as good as we believe, we would expect a significant increase in patients who get liver transplants,” Dr. Friend said.

According to Dr. Doyle, the group is “ahead of the game.” To her knowledge, two other teams are developing physiologic-temperature liver pump systems—Dr. Doyle and her colleagues William Chapman, MD, and Vijay Subramanian, MD, at Washington University, and Constantino Fondevila, MD, PhD, at the University of Barcelona—but both are at more preliminary stages.

“The U.K. team is the first to produce human data with the pump and show it’s safe and viable as a liver transplantation device. Now, it’s important to make sure the technology is foolproof and cost-effective,” Dr. Doyle said.

“The U.K. team needs to be highly commended. The pump is a great achievement.”

Thursday, June 13, 2013

Girl gets lung transplant after policy revised

US girl gets lung transplant after political firestorm and temporary policy change

The changes—effective for one year pending further review—allow transplant programs to request higher priority for children and allow for doctors to consider transplanting lungs from teens or adult donors.

By Kerry Sheridan, Medical Express

A 10-year-old American girl whose dire need for a lung transplant catapulted her into the political spotlight underwent potentially life-saving surgery Wednesday after a donor was found.

"God is great! He moved the mountain! Sarah got THE CALL," wrote Janet Ruddock Murnaghan, the mother of the critically ill child, on her Facebook page.
The Pennsylvania girl, who suffers from cystic fibrosis and was said to be near death's door without a transplant, entered surgery early Wednesday, her mother said. The operation was expected to last several hours.
The case drew international attention when the child's family gave interviews to cable news networks and pleaded with the US government to bend the rules and allow her to be put on the list for an adult lung transplant.
She was at the top of a waiting list for children under 12, but pediatric donor lungs are far rarer than those from adults, and experts had given Sarah only a few weeks to live if doctors did not perform a transplant.
It was unclear whether the donated organs, which arrived late Tuesday, came from an adult or a child.
"Please pray for Sarah's donor, her HERO, who has given her the gift of life. Today their family has experienced a tremendous loss, may God grant them a peace that surpasses understanding," her mother wrote.
"Today is the start of Sarah's new beginning and new life!"
The Children's Hospital of Philadelphia declined to share any details about the surgery, citing patient privacy.
Last week, a US judge took the unusual step of ordering that the child should be placed on an adult waiting list, after Secretary of Health and Human Services Kathleen Sebelius declined to intervene and the family filed a lawsuit, alleging that current US standards discriminated against children.
A petition by the girl's family and friends appealing for new donor policy regarding children in need of transplants drew more than 372,000 supporters.
The practice of transplanting adult organs into children is relatively rare.
Just one lung transplant has occurred in the United States since 2007 involving a donor older than 18 and a recipient younger than 12, according to government data.
On Monday, the Organ Procurement and Transplantation Network agreed to revise its policy on transplant candidates 11 and under, which previously stated that children may only be considered for adult lungs if there were no other suitable candidates.
The changes—effective for one year pending further review—allow transplant programs to request higher priority for children and allow for doctors to consider transplanting lungs from teens or adult donors.
"The number of patients potentially affected by this policy is very small and unlikely to have a significant impact on the larger pool of transplant candidates," the OPTN said.
As of June 10, there were 1,659 candidates listed for a lung transplant nationwide, of whom 30 were under age 10.
Murnaghan was diagnosed as an infant with cystic fibrosis, a chronic lung disease that affects about 70,000 people worldwide. The median survival age is the late 30s.
While Murnaghan's case sparked a torrent of media attention, it also raised questions about the ethics of appealing for medical help in such a public way, with some experts fearing it could set a damaging precedent.
"It raised the question, can you sue or use PR (public relations) or otherwise campaign to get to the head of the line?" said Arthur Caplan, director of the division of medical ethics at New York University Langone Medical Center.
"In our system in the US, you sometimes can use money to gain an advantage. I don't think that is a startling revelation," he told AFP.
However, he added that the girl's apparent victory of getting a transplant does not guarantee it will be successful, and complications are frequent in such cases.
"I think this little girl got herself into the woods by her parents fighting for her, and that helped. But she is not out of the woods."

Sarah Murnaghan underwent a six-hour surgery Wednesday at Children's Hospital of Philadelphia according to her Aunt, Sharon Ruddeock.
 Explore further: Transplant group considers lung rule changes

Wednesday, June 12, 2013

Don't take those kidneys with you

Everyone can be a superhero by donating an organ

There are no bathrooms in heaven. That’s a bit of a presumptuous declaration on my part, as I have never visited the afterlife, nor am I psychic. But in the many books that describe the experiences of people miraculously brought back from the dead, no one ever mentions bathrooms.

Despite the lack of toilets in the afterlife, we seem to be reluctant to hand over our kidneys – or other organs – when we no longer need them. Canada has one of the lowest organ-donation rates in the developed world.

At some level, I understand – after all, it’s a gross topic of conversation. Until you need a transplant to live, and then all you can think about is those icky, elusive organs.

Waiting helplessly for the organ that will save the life of someone you love is like finding out your cruise ship is sinking and your pleasurable journey is abruptly ending. You rush your family to wait in line for lifeboats, but there aren’t enough. A primitive self, a being that you were unaware of, emerges – and all the polite manners you were taught as a child and have been true to as an adult are wiped out. You would plead, scream, bribe and finally fight like an unsocialized pit bull to get your loved one a spot on one of the remaining lifeboats.

When my 39-year-old sister was diagnosed with lung cancer, I was hit with the unfairness of it all. No one in my family smoked. We ate broccoli and antioxidant-laden fruits; heck, we even exercised.

It turns out that a healthy lifestyle doesn’t prevent the particular form of lung cancer Anne had. The doctor held out the tiniest light of hope – a possible lung transplant. But my sister would have to wait with 1,400 other people to see if an organ became available in time.

Waiting doesn’t suit me – I am a doer, a problem solver, an action-oriented person. In the face of possible tragedy, I wanted to be my sister’s hero, swooping through the medical system to find a solution to this horrible situation.

I am no stranger to the world of superheroes. Like Walter Mitty, I escape the mundane routine of life by dreaming that I can fly about the city in a mask, red satin cape and flattering spandex tights, saving lives. In my fantasies, I have rescued a man, coincidentally handsome, trapped in a burning building as he crouches on the floor, coughing and gasping. I have jumped into a swimming pool to haul out a drowning child. I’ve never shared these fantasies with my family because frankly, even to me, they sound childish and narcissistic.

There was no role for me as an action hero on the transplant circuit. It was all about waiting: waiting in doctors’ offices, waiting for X-ray and chemotherapy results, waiting for therapy, and waiting for my sister to laboriously walk a few steps to the wheelchair, gasping for breath, as we sorted out the oxygen lines. And, most frustrating, waiting for her to be at the front of the organ lineup.

Finally, after endless hours spent staring at the silent mobile phone, the call came, and hope in the form of shiny, healthy, pink lungs arrived.

Anne had waited a year for the lungs that would prolong her life. During that time, I learned to be patient, to pause and appreciate the joyous moments of life – skating with my nephew and niece, just sitting still, quietly talking with my sister – instead of scurrying around like a rat trying to find its way out of a maze.

On the evening of the transplant, Anne was close to death. The hugs and kisses in her hospital room were sprinkled with tears and promises. My sisters and I vowed we would help with her children, finish the award nomination for her surgeon and, if the transplant didn’t work, bury her in the pretty, violet-blue outfit she had bought in Paris the previous summer.

My sister had three precious years after the double lung transplant. When people tell me three years is not much time, I point out that it is how we live the minutes, the hours and the days that counts.

Three years is infinity if it is filled with children’s laughter, birthday celebrations, drives in a sports car with the top down, and pink tulips emerging from the damp ground every spring, full of promise. It is time to write journals and stories, take photographs and carefully select gifts for the children to unwrap on special future occasions to remember how much they were loved by their mother.

I no longer fantasize about flying from a rooftop in my tights to save a life. I can’t pretend spandex and red capes are important when I encountered so many authentic heroes in the transplant world – patients who drew upon unknown depths of courage; stoical families, selfless donors, and physicians and nurses who tirelessly dispensed cautious hope in the face of tears.

On the Christmas Day before my sister died, she handed me a flat box wrapped in glittery silver paper. I opened it carefully to find a personalized licence plate: “My Hero.” It hangs framed in my office, reminding me that I don’t need tights or a cape to be courageous in life.

She died in April, which is National Organ and Tissue Donation Awareness month.

There are no bathrooms in heaven, so you won’t need to take those kidneys with you.

Cathy Evans, PhD, MSc, BScPT
University of Toronto
Dept. of Physical Therapy
Graduate Coordinator
Assistant Professor

Thanks to Cathy Evans for submitting this guest post about her sister Anne Barbetta, who I knew very well. Anne was a successful fundraiser for transplant and cancer research and a promoter of organ & tissue donation.