From the Times -Chain of Human Kindness

July 26, 2007

Chris Ayres in Los Angeles

It is the medical nightmare that nobody wants to face. A close relative needs a new kidney. You want to donate, but there is no blood-type match.

For most patients there is only one thing left to do: join a waiting list, in the knowledge that the wait of up to two years could be too long.

But now, thanks to a scheme inspired by the way in which modern networks operate, coupled with a large helping of human kindness, there is another way to find and donate kidneys.

It is claimed that the new system, called paired donations, could significantly shorten the list of patients waiting for kidney transplants in the US. It could also be exported to other countries, including Britain, where there are about 5,000 people are waiting for a new kidney.

Related Internet Links

• Alliance for Paired Donation

Related Links

• Friends united with matching donor kidneys

• Chief Medical Officer: Everyone must be a donor

• Kidney reality show is revealed as a hoax

One of the first patients involved in the new scheme is Barb Bunnell, a 53-year-old from Phoenix, Arizona, who lived for years with polycystic kidney disease.

Mrs Bunnell’s husband, Ron, a chief administration officer of a hospital management company, wanted to donate a kidney to his wife, but the transplant could not go ahead because they were not matched.

However, Mrs Bunnell was able to get another kidney from a matching donor in Michigan — a 28-year-old man who donated for no other reason than altruism.

This is where the story would normally end. Under the new system, however, Mr Bunnell went ahead with his plan to have his kidney removed, and instead of giving it to his wife he donated it to a complete stranger.

The recipient of his kidney had been in a similar position as Mrs Bunnell: her best friend wanted to donate but, as with the Bunnells, there was no match. Now that the woman has been given Mr Bunnell’s kidney, her best friend will follow his example and give her kidney to another stranger, and so on, resulting in a chain reaction that could rapidly shorten the kidney waiting list and bring the waiting time down from years to months.

It is thought that eight transplant patients will ultimately benefit from the chain that began with Mrs Bunnell and her Michigan donor, although it could be many more.

The scheme was launched in 2000 but it has only recently been given approval by the Federal Organ Procurement and Transplantation Network, and is now awaiting President Bush’s signature — largely to clarify that a paired donation, such as Mr Bunnell’s “gift” of a kidney to a woman he had never met before, does not represent a form of payment.

The system is operated by an organisation called the Alliance for Paired Donation, based in Ohio. The organisers hope that, since it is illegal to buy a donated organ in the US, nobody will attempt to subvert the founders’ altruistic intentions. However, for all the high-tech computer code that makes the scheme possible, the “paired donation” programme still depends on people such as Matt Jones, the Michigan man who gave his kidney to Mrs Bunnell for no other reason than wanting to help.

Mr Jones is one of a tiny number of people willing to take the risk of undergoing an operation with a death rate of 3 in 10,000, simply as an act of altruism — yet doctors say that kidneys from living donors such as Mr Jones are far more effective than kidneys from deceased donors, because the circumstances of the death can make it hard to transport the organ to the right recipient in the necessary time.

“In my opinion, it’s just like giving blood or donating to charity,” Mr Jones told the Arizona Republic this week. “You’ve got something you don’t really need, you can help someone, you do it.”

Last week there were 72,393 people waiting for a kidney in the United States, according to the Organ Procurement and Transplantation Network. Wait time can easily stretch to years depending on blood type and other variables. For paired donations, the wait is likely to be shorter, in part because while everybody on a paired donation list needs a kidney, everybody on the list also signs up with a person who has a kidney to give.

Mr Bunnell said that he was delighted to continue the chain with his own kidney donation.

“I look at it as Barb got this gift from Matt, and I’m just paying it forward,” he explained. “It is terrific to be part of something bigger.”

Organ trade

£15,000 allegedly paid to Ukrainian kidney donors by nine Israelis arrested this month

3 contestants on a Dutch TV programme, The Big Donor Show, apparently vied for a kidney from a dying woman. It was a hoax

1,400 people sell one of their kidneys to a stranger in Iran each year

1,800 transplants a year in the UK. Last year 6,000 people remained on the waiting list

Source: Times database

Rare lung-liver transplant

Rare lung-liver transplant depended on generosity
July 24, 2007
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''A single donor has the potential
to save and improve up to 50 lives and take as many as eight people off transplant waiting lists.''On July 20, 2005 I started over with a new life. It was the day I received a transplant of my liver and both lungs. If it weren't for a generous, altruistic organ donor, it would never have been possible. It is an extraordinary story of a unique disease and challenging journey. There have only been about a dozen or so lung-liver transplants in the United States, and fewer than 75 worldwide.It all started in the early 1990s. I began noticing that I was having some trouble breathing when doing tasks that required only a moderate amount of exertion. By 1997, I could barely climb a flight of stairs without getting completely winded. My doctor immediately ran a few tests and determined that I had a rare condition called Alpha-1 Antitrypsin Deficiency.If one has a deficiency of this Alpha-1 protein, lung damage often occurs. It is an inherited, genetic disease. Typically it affects only the lungs, causing an early onset and rapid progression of emphysema in people who inherit two of the damaged genes. In more rare cases, such as mine, the liver can also be affected by cirrhosis. Cirrhosis is a common cause of a dangerous type of liver cancer called hepatocellular carcinoma, or HCC. A few years after I was diagnosed with emphysema, it was discovered that I had cirrhosis and it had caused cancer in my liver.Early in 2004, I was referred to the Transplant Center at the Hospital of the University of Pennsylvania. Specialists there said my only hope for survival was a liver transplant. But because of my advanced lung disease, I could not tolerate the surgery. They said I would need a lung transplant simultaneous with a liver transplant. The Hospital of the University of Pennsylvania had only done two such transplants in the past. Most transplant centers in the United States have never done any. But, they were optimistic that I would have a very successful outcome, and I underwent several days of exhaustive testing to be evaluated for the combination lung-liver transplant surgery. In June 2004 I was placed on the waiting list for the transplant.On the evening of July 19, 2005 I received a phone call from the hospital in Philadelphia. One of the transplant coordinators was calling to say they had what appeared to be suitable lungs and a liver for my transplant. I went to Philadelphia and arrived at the hospital at around 8 p.m. As soon as word was received that the organs were satisfactory, I was rushed to the operating room and the surgery was under way.Less than a month later, I was released from the hospital. I began an intensive three-month rehabilitation program that included physical therapy and pulmonary conditioning. A few months later, in January of 2006, I went back to work full-time as an electrical product engineer. Because of the incredible caring expertise of the doctors and nurses at the University of Pennsylvania, at age 50 I have been able to return to very normal lifestyle. There is no sign of the liver cancer returning, and my lung function is now completely normal.If not for the extraordinary, selfless act of the person who decided to be an organ donor, this truly amazing transplant surgery might never have happened, and I would not be alive to write this today.According to the Gift of Life Donor Program, an average of 17 people in the United States die every day waiting for organ transplants. Nationwide, there are more than 100,000 men, women, and children needing heart, kidney, liver, lung and pancreas transplants. There are more than 5,000 waiting just in the eastern Pennsylvania, New Jersey, and Delaware area. A single donor has the potential to save and improve up to 50 lives and take as many as eight people off transplant waiting lists.All major religions support organ and tissue donation. Most faiths consider organ donation a personal decision and the ultimate gift of generosity and compassion. I hope sharing my experience will inspire everyone to make the decision to commit to donation. There are many simple ways to accomplish this.Indicate your wishes when you renew your driver's license. You also can sign up on-line at http://www.donatelife pa.org. And, discuss your decision with your family. One of the most important things you can do is to tell your family of your decision to give the gift of life.Richard R. Fallstich lives in Fountain Hill.RICHARD R. FALLSTICH
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Transplant Games

Double test for our transplant team of heroes

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Athletes on British and world stage
Tuesday, July 24, 2007
By Emily Moulton
A record number of Ulster transplant patients will be heading to Edinburgh and then Bangkok over the next few weeks to compete in this year's British and World Transplant Games.
The group of 26 individuals will compete against more than 1,000 other transplant patients from around the world in events such as swimming, athletics, volleyball and golf.
The Transplant Games are staged annually to demonstrate to the public the benefits of organ donation.
But despite high levels of support, recent research shows that only 32% of would-be donors in the UK have recorded their intention to donate by joining the register.
Currently in Northern Ireland there are 317 people, including eight children, who are awaiting an organ transplant.
Northern Ireland Transplant Games team manager Michelle Morrow explained the games were a perfect vehicle to highlight the need for more people to sign up to the Organ Donation Register.
"Transplantation is only possible thanks to the generosity of donors and their families who make this selfless gift," she said.
"The register is the best way for people to record their wishes and leave a legacy of life for others after their death. Currently there are 317 local people, including eight children, waiting for the gift of an organ that will save or dramatically improve their lives."
The Northern Ireland team is made up of adults and children aged between seven and 62 years who have all received either a kidney or bone marrow life-saving transplant.
One member is Bessbrook nurse Emma Doyle. Emma received a kidney transplant in 1998 after being on dialysis since early childhood.
Following her transplant, Emma returned to school and went on to study nursing at Queen's University. She now works as a staff nurse in the Cancer Centre at the Belfast City Hospital and is a regular competitor in the British Transplant Games where she has twice been named the Best Adult Female Athlete.
Last year Emma picked up three gold and silver medals at the UK games.
Seven-year-old Aoife Doyle, from Crumlin, who received a kidney transplant in 2005 after being on dialysis since birth, is the youngest member of the team to take part in the event.
Of the 26 members taking part in the British games, eight will go on to compete in the World Games which is being held in Bangkok on August 25.
Crumlin teenager Helena Boyle (17) makes her debut and is the first junior competitor from Belfast to have been selected for the World Games following her outstanding performance in last year's British Games.
Also joining the squad is Belfast man Andrew Weir. The 46-year-old is celebrating the 25th anniversary of his bone marrow transplant and is said to be very excited about competing on the world stage.
But before the team heads off to compete next Thursday, a special fundraising event is being held today to help raise money for the team and awareness about organ donation.
Members of the Transplant Games team and their families and friends will walk from the Royal Belfast Hospital for Sick Children and the Belfast City Hospital Tower as part of the national UK Million Mile Walk which aims to encourage a further one million people to sign the Organ Donor Register.
Anyone interested in signing up to the register should visit www.uktransplant.org.uk or call the NHS Organ Donor Line on 0845 60 60 400.
More articles in Health
Families come first in the donor debate

Fighting the System

OMAHA, Neb. -- While organ transplants can mean a second chance at life, some donated remains contain evidence of a crime.
On Sept. 10, 2005, Tyrone Williams, 26, was rushed to the Nebraska Medical Center in critical condition. He had been hit in the head with a brick while trying to break up a fight. Two days later, he died.
"The worst thing that can ever happen to anybody is to lose a child, but in facing that, the last thing they want to do is have to fight a system," said Williams' father, Adolph.

Adolph Williams said he remembers fighting the system. All he wanted to do was donate his son's organs to save someone else.
"There's probably very few opportunities that you have to get a 26-year-old's heart, or very young eyes, and for someone else to be able to benefit from that, it was pretty important to me to make sure to facilitate that," Williams said.
In a homicide case, it's important to preserve the evidence, prosecutors said. Williams was told his son's organs could not be donated because it would jeopardize the criminal case.
"In most cases, when you order an autopsy, organ retrieval is out the window," said Sarpy County Sheriff Jeff Davis.
Law enforcement and prosecutors throughout Nebraska said it is a tough decision.
"Which has a higher priority?" asked Sarpy County Attorney Lee Poliko. "The life that might be saved by the donation of an organ, or the successful prosecution of an offender? My job, and I take the position, the prosecution takes the first priority."
Polikov and Douglas County Attorney Don Kleine said they support transplantation, but agree that protecting the evidence comes first. Both men said the county coroners have the final say.
"My goal is to make sure we can do both -- protect the evidence and do transplants," Kleine said.
That's the goal of transplant surgeon Dr. Byers Shaw, as well.
"I can't think of any instance in which we couldn't provide all the information necessary," Shaw said.
Shaw said that if anything, the donor process provides a better opportunity to look for evidence because all organs are examined extremely carefully for viability as transplant organs. He said not all coroners can be convinced.
"In the 22 years I've been here, I think you could count up dozens of instances in which there wasn't just a delay. We were prevented from using organs from patients because coroners just absolutely refused to allow us to do so," Shaw said.
In Tyrone Williams' case, his father refused to take no for an answer. He said he was disappointed his son's heart and other vital organs could not be used, but his son's skin, bones and corneas were donated for transplant .
"It was such a tragedy, and for somebody else to be able to benefit in light of such a huge loss for us is definitely a blessing," said Adolph Williams.
New legislation before the Nebraska Unicameral requires coroners to conduct preliminary investigations in time for transplants to be carried out. If the investigation isn't conducted within a reasonable time, the law would allow organs to be donated for transplantation.
No one was ever arrested or prosecuted for the death of Tyrone Williams.
Copyright 2007 by KETV.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Families of Organ Donors

Posted July 22, 2007
Families of organ donors get a day of honor
Manawa couple among those recognized in Washington, D.C.
By Ellyn Ferguson Post-Crescent Washington bureau
WASHINGTON — Tears flowed as several hundred people were honored Sunday for deciding to donate organs or tissues from their loved ones at death.

“Donor families have been able to overcome personal sorrow to make a decision to help others by making the gift of life. This is a way for me, for all of us, to help recognize this legacy of life that all donors have created,” acting Surgeon General Kenneth P. Moritsugu told the audience attending the 10th National Donor Recognition Ceremony and Workshop.Mortisugu, whose family donated organs from his late wife and daughter, counted himself among those who know what it means to hope that death can aid the living.At the Renaissance Hotel in downtown Washington, families and living donors of kidneys and tissues such as bone marrow received thanks from people who have received organ transplants, praise from government officials and palm-sized medallions. Songwriter Hunter Brucks played his new composition, “Second Chance,” about organ donations as a second chance for seriously ill people.For Manawa’s Allan and Nicki Ziepke, the decision in June 2005 to allow a transplant team to remove the liver, heart, pancreas and both kidneys from 7-year-old son, Noah, after he was declared brain dead made sense. Noah died three days after swallowing a small ball he had popped into his mouth in a game of keep-away with one of his younger sisters.“The donation has made him immortal. That honestly is what has helped me cope (with Noah’s death),” said Allan Ziepke, a 32-year-old printer.The Ziepkes said they wanted some good to come from their tragedy.“The youngest (recipient) was less than a year old and the oldest was a 70-year-old man,” Allan Ziepke said.The idea of immortality, of giving a possible gift of life was a recurring theme at the three-day conference for donor families, living donors, organ recipients and organ transplant workers. The National Kidney Foundation, the National Donor Family Council and Health Resources and Services Administration, a part of the Department of Health and Human Services, sponsored the event.The people who attended the conference are on the front lines of an ongoing effort to meet the demand for vital organs and tissues, such as blood vessels, heart valves and corneas. About 97,000 people are on a national waiting list for transplants. About 18 of them die each day before an organ match can be found.Ola Graham-Ballinger cherishes a note from a 56-year-old man who received the heart of her 16-year-old son, Mark, who was shot and killed in July 1990.The man wrote that he had been able to walk his daughter down the aisle at her wedding.“It was like a new life (was created). I became an advocate for organ donation. I wanted to let people know about other people giving the gift of life,” said Graham-Ballinger, a resident of Washington, D.C. She and her four surviving children have signed organ/tissue donor cards.Sherry Berrier of Lexington, N.C., copes with the death of husband Ken, 52, in October 2005, and son John, 23, in October 2006, by thinking “about how many lives” they may have saved with their organs.Berrier made the trip here because “I wanted to be with people who have experienced what I have. I get strength from them. They get strength from me.”Berrier and others attending the conference had the option of attending workshops or relaxation, coming to terms with grief and learning more about organ transplants.Families also contributed patches for more than 20 panels of quilts.A patch for Tristan Copeland, who died just after his ninth birthday, declared “Don’t take your organ to Heaven. Heaven knows we need them here. Make a miracle. Tristan did.”A patch for farmer Keith A. Spears of Chandler, Ariz., decorated with a heart and a little red tractor, succinctly traced the give-and-take of organ donation.“Heart recipient 3/16/92. Cornea donor 5/6/2000,” the patch said.The Ziepkes, whose trip was paid for by the Wisconsin Donor Network, are thinking about designing a patch for Noah. But they plan to take their time and get it just right.“He’d always been a compassionate and helpful child,” Allan Ziepke said.
Ellyn Ferguson: 202-906-8116, or eferguson@postcrescent.com

Gift of Kidney

Gift of kidney begins string of organ donations
John FahertyThe Arizona RepublicJul. 22, 2007 12:00 AM
A chain of small miracles started in Phoenix last week.It began when a Michigan man decided to donate one of his kidneys to a person he had never met. His decision means a Phoenix woman will be able to watch her grandchildren grow up. But it does not stop there. Now the Phoenix woman's husband will donate one of his kidneys to a perfect stranger. That woman's best friend will then do the same. And so on and so on.
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Eventually eight people, and possibly far more, will be saved because of the marriage of good will and medical technology. This kidney chain - the first of its kind - is possible because of a new type of organ donation called a paired donation. It happens when someone who needs a kidney has a person who is willing to donate one, but their body chemistry prevents a good match. In a paired donation, those two people will be connected with two other people in the same situation. Each healthy person then donates a kidney to someone who needs it. The only unusual thing is that the donors are helping strangers directly in order to indirectly help the person they love.This type of approach, coupled with federal legislation awaiting President Bush's signature, could ultimately transform the field of organ donation.
'Paying it forward' In Petoskey, Mich., Matt Jones made the decision to donate a kidney simply because he could. In Phoenix, Barb Bunnell's kidneys were failing, and she was learning that her husband would not be able to donate one of his kidneys to her. It was Barb's good fortune, however, to be a perfect match with Jones. On Wednesday, his organ was removed at Banner Good Samaritan Medical Center in Phoenix. Moments later, in the operating room next door, it was placed inside Bunnell. It is now keeping her healthy and alive. "I will be able to live a longer life. And a better life," Bunnell said from her hospital bed before her surgery. "I will not be on dialysis. I will watch my grandchildren grow up." It is the next step that will transform the one act into a series of life-changing events. Barb's husband, Ron Bunnell, will now donate one of his kidneys to a woman he's never met. "I look at it as Barb got this gift from Matt, and I'm just paying it forward," Ron said. "It is terrific to be part of something bigger."The chain will not end there. The woman receiving Ron's kidney has a best friend. That friend will donate one of her kidneys to another perfect stranger. That kidney will begin a process where six other people will receive a new kidney under the same circumstance. If everything works according to plan, the chain of donated organs started by Jones would continue. "I thought that if I could help one person live a decent life, that would be great," Jones said. "It's turned out to be a lot more than that."
Paired donation cuts wait The first successful living donation was in 1954 in Boston, when a brother gave his identical twin one of his kidneys. Nearly always, a kidney is donated by sibling or dear friend or spouse. That was the Bunnell's plan. The couple knew for decades that she would eventually face dialysis or need a transplant. She has polycystic kidney disease, a hereditary disorder that killed her mother and grandmother in their mid-50s. Ron Bunnell, the chief administrative officer at Banner Health, was eager to donate a kidney to his wife. When Barb, 53, learned that her husband would not be a good match for her, she was devastated. As her kidney function diminished - Barb's were operating at about 18 percent of normal - she started looking into the field of paired donations.A paired donation was her best chance. Last week, there were 72,393 people waiting for a kidney in this country, according to the Organ Procurement and Transplantation Network, which works with U.S. Department of Health and Human Services. Wait time can easily stretch to years depending on blood type and other variables. But for paired donations, the wait is shorter, in part because while everybody on a paired donation list needs a kidney, everybody on the list also signs up with a person who has a kidney to give. Barb Bunnell entered her data with the Alliance for Paired Donation in Toledo, Ohio, in May and a match was found almost immediately.
Donation ethics Paired donations first started occurring around 2000. Before Jones' donation began the kidney chain, the practice usually involved just two pairs. The benefits of paired donations extend beyond the possibility of a shorter wait. The first is that in a paired donation, only living donors are used. Most people who receive a kidney get one from a person who has died, though living donations now make up 45 percent of transplants. Cadaver kidneys, though beneficial, do not last as long as a kidney from a live donor.A kidney from a live donor is still working in 80 percent of recipients after five years. A kidney from a deceased donor is still working in about 55 percent of recipients after five years, according to the U.S. Department of Health and Human Services. One reason for this is because a live donation can be planned. In a cadaver donation, the donor may die at any time of day or night and perhaps hours away from the person who will receive it. Despite the benefits of paired donations, ethical concerns were raised about the practice since it first began. Some ethicists questioned whether the practice equated to "paying" for a kidney by offering one in return.As more people have chosen this option - there have been 194 paired donations in this country - the medical community has come to support the concept. It has earned the blessing of the Federal Organ Procurement and Transplantation Network, which governs transplants.The Journal of the American Medical Association published an influential report strongly supporting paired donations in 2005. The insurance industry also supports the practice. The cost of a transplant is high but can be significantly less than the cost of spending years on dialysis. Now people in the industry are excited about the prospect of increased donations. When a person from a paired donation gets a kidney, it shortens the waiting period for others who need one without subtracting from the pool of organs.
Creating a chain Paired donations can help the most people when a person like Matt Jones decides to give a kidney with no strings attached. When an altruistic donor enters the equation, it can set off a string of donations. The beauty of paired donations is that with the addition of an altruistic organ, a chain like the one started last week can, at least in theory, continue forever. Ron Bunnell will serve as the "bridge" donor when he flies to Toledo on Monday to prepare to donate his kidney to a woman named Angela. He described her as a 32-year-old who has been on dialysis for more than 10 years."She has been so sick for so long, I don't think she can remember what it is like to not be on dialysis," Ron Bunnell said. "That's why I am so looking forward to this."Dr. Michael Rees, medical director of the Alliance for Paired Donation, will perform the surgery on Thursday. Rees, 44, has been instrumental in starting the alliance and in creating a computer program that can measure all the variables of a possible donation to make sure the right kidney ends up in the right person. Rees finds that work rewarding, but an altruistic donor provides the chance for an endless number of sick people to get well."It's hard to put into words," Rees said. "The kidney that Angela's partner is donating will allow six other people to get a new kidney. The line just keeps going."
'Doing the right thing' None of that mattered to Jones, 28, when he decided to donate a kidney. He simply wanted to help one person. Although people have questioned him relentlessly about his motivations, he always comes back to the same answer."In my opinion, it's just like giving blood or donating to a charity. You've got something you don't really need, you can help someone, you do it."Many of his friends in rural Michigan do not understand why he chose to put himself at risk - kidney donation is major surgery with a death rate of 3 per 10,000 surgeries - to help someone he did not know. He has stopped trying to explain it to his brother. His fiancee, the mother of one of his four children, says she supported his decision even if it frightened her.Jones said his decision to donate his kidney to a stranger was made easier, not harder, because he is a father. "This is the right thing to do. It's good for them to see their father doing the right thing," Jones said. "And if one of my kids ever needed something like this, I hope somebody would do the same thing for them."Reach the reporter at john .faherty@arizonarepublic.com or (602) 444-4803.