Wednesday, July 25, 2007

From the Times -Chain of Human Kindness

July 26, 2007




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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.

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


Tuesday, July 24, 2007

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.
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