Paying organ donors' expenses at center of ethics debate

By Elizabeth Weise, USA TODAY

Organ donors, living and dead, would receive more money for expenses under an initiative being proposed today designed to shorten the wait for transplants.

The National Kidney Foundation, a New-York based non-profit, released a set of recommendations it says could end the wait for a kidney in 10 years.

Currently, 78,209 people are waiting for kidneys in the USA, representing 77% of all those waiting for donated organs.

Organ donation "is a good thing to do, it's the right thing to do, and no family should be hurt by doing it," says John Davis, the foundation's chief executive. "Families … fall through the cracks and get bills from hospitals and funeral homes, and they didn't expect it."

Of the recommendations, the most controversial may be that organ-procurement organizations cover donation-incurred funeral expenses for families who donate a relative's organs. Preparing the body for burial can require extra time and expense. In 2007, 22,049 of the 28,360 organ transplants were from deceased donors, according the United Network for Organ Sharing.

Ethical concerns are being raised. Helping people with funeral expenses "crosses over into helping bribe them," says Arthur Caplan, a bioethicist at the University of Pennsylvania. "You're edging towards financial incentives rather than compensation."

he foundation also calls for all living donor costs to be covered because unexpected expenses can add up.

When Tom Falsey of Shawnee, Kan., donated a kidney to a stranger, the patient's insurance paid for the medical costs, but Falsey paid to travel to Nebraska for tests and the transplant. He also had to pay hotel costs for his wife, who accompanied him. "It was about $1,000," he says. "I knew there would be expenses, but I didn't know that they would be so high." These peripheral expenses are not covered by Medicare or private insurance.

About 4,500 people a year die waiting for a kidney. The number of people who will go on dialysis and need a kidney is expected to double in the next few years, as the population ages, says David Hull, head of transplantation at Hartford Hospital in Connecticut. Sally Satel, a kidney recipient and scholar at the American Enterprise Institute who writes on the need to create financial incentives for kidney donation, says it doesn't go far enough. She supports incentives that go beyond covering expenses.

"This is not original and will be by no means sufficient to close the gap between supply and demand," she says. "It's too timid."

The foundation says it will work with Congress to draft a bill that would implement its recommendations, which would be paid for by a combination of Medicare and private insurance.

Other recommendations for the foundation's "End the Wait!" initiative include:

•Covering immunosuppressive drugs for life. Medicare pays for only three years. After that, some patients can't afford the drugs and go back on dialysis. The drugs cost about $12,000 a year; dialysis, $71,000 a year.

•Guaranteeing living donors health care coverage and life insurance for all medical issues related to the donation.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Terminally ill lung recipient gets married in hospital

Bulletin - Jessica passed away in St. Mary's Hospital February 9th, 2009.

This story has special meaning for me because I got to know Jessica and her family several years ago. Jessica was anxious to "give back" for the gift of life she had been given by her lung transplant in June of 2005 and volunteered as a speaker to promote organ donation. She also helped me organize a lung transplant picnic in June of 2006. My thoughts and prayers are with Jessica and her family during this trying time.

Jessica Mogg is terminally ill, but she didn't let that end her dream of getting married.
Photo: MATHEW McCARTHY, Record staff

By April Robinson TheRecord.com

Jessica Mogg thumbs through a pile of wedding photos scattered across her hospital bed.

Two days after the ceremony, she still can't believe how fast it all happened.

But getting married was something the 27-year-old just had to do. Mogg, who has cystic fibrosis, doesn't know how much longer she'll live.

She and Colin Panyadeth, her boyfriend of 10 years, had planned to marry in September of this year.

This month, however, Mogg had to be admitted to hospital. It's a place she knows only too well, after dealing with her debilitating disease since birth. Most people with the disease die in their 20s or 30s.

Since her late teens, cystic fibrosis has made her lungs so frail she hasn't been able to work. Three years after a double-lung transplant, doctors say Mogg needs another one.

But she's feeling so sick, she has decided against more surgery. She has a few weeks to live at most.

This didn't curb her desire to marry Panyadeth, 26.

"I'd been feeling really bummed out," Mogg said yesterday, with tubes under her nose to help her breathe. "I don't know how much longer I'll be around. But I wanted to marry him so bad."

The couple have been together since they met at an all-ages event at Metropolis, a Kitchener nightclub now called the Wax. Panyadeth had gotten into a fight, and one of the other teens accidentally shoved Mogg to the ground. Panyadeth came to her rescue.

Ten years later, the two are still inseparable. They've grown up together.

And on Tuesday morning, Mogg's nurses told her it was time to make her wish for a wedding come true -- right there at the St. Mary's Hospital chapel.

"She was having a bit of a better day and the nurses knew she wanted to do it," said her sister, Shannon Langer, 33.

Two nurses slipped home to grab a few dresses for Mogg to chose from. Another nurse got a hair dryer and makeup. They all chipped in for a bouquet of red roses, and Mogg sent her sister to buy a tiara.

Mogg called Panyadeth and said, "Colin -- wake up. We're getting married."

Panyadeth didn't argue -- he knew their wedding would come eventually, though maybe not that soon.

"I just sat back and took it in for half an hour," he said. "Then I got my hair cut, bought the rings, and went to the hospital."

By 3 p.m., everything had fallen into place.

Mogg wore a chocolate brown, strapless, floor-length dress. Her nephews, aged four and six, walked ahead of her down the aisle, and kissed her on the cheek at the altar.

Nurses followed behind, with a wheelchair in case she felt weak.

About 50 family, friends and hospital staff attended the wedding, mostly a symbolic ceremony, because there was no marriage license.

Mogg's beloved 90-year-old grandmother from Cambridge was there. So was Dr. Jonathan Langridge, Mogg's favourite doctor, who read a prayer. Nurses who had worked the night shift returned to the hospital for the service.

"It was amazing," Mogg said. "I was just so shocked. I was so honored they would do that for me."

She didn't shed a tear.

"I was just so happy. I was laughing, almost."

Yesterday, Mogg was in a lot of pain.

Cystic fibrosis causes a buildup of thick mucus, which leads to infection, inflammation and damage to delicate lung tissue.

As her lungs fail, she breathes in a mixture of oxygen and carbon dioxide, but the carbon dioxide stays in her body, her sister said. She gets frequent headaches, and the carbon dioxide makes her tired.

"I don't know how I'm going to deal with it," said Panyadeth, who does upholstery. For now, he just wants to be there for her.

"The time you have together. You don't take it for granted."

It's difficult for Mogg's family, knowing the end is near. But they've noticed a change since the wedding.

Mogg is at peace.

"I'm so happy," she said quietly, firmly.

"I don't know what I could do that would make me as happy as this."

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Lung transplants: Doing more is better and safer, a Johns Hopkins study suggests

Findings set safety benchmark for all transplant programs at 20 per year, on average

EurekAlert

Transplant surgeons at Johns Hopkins have evidence that hospitals performing at least 20 lung transplant procedures a year, on average, have the best overall patient survival rates and lowest number of deaths from the complex surgery.

Researchers say their latest findings, to be presented Jan. 27 at the 45th annual meeting of the Society of Thoracic Surgeons in San Francisco, could serve as a patient safety benchmark or national standard for all hospitals to meet. The study is believed to be the first overall assessment since the procedure was perfected and widely adopted in the 1990s of how each of the 79 U.S. and Canadian medical centers licensed to perform lung transplantation measure up.

Institutions performing 20 more lung transplants annually, the researchers say, see the chances of an organ recipient surviving the critical first month of recovery plateau, at over 95 percent. Chances of recipients surviving the first year post-surgery are practically the same, at 83 percent. The contrast is sharp for the three-quarters of hospitals performing significantly fewer lung transplants. Then, an organ recipient's chances of dying within the first month after surgery nearly doubles, dropping survival rates to 90 percent if the hospital performs two or less per year, and to 73 percent after one year.

This, researchers say, occurred despite lower-volume centers having less severely ill patients than higher-volume centers.

"Lung transplantation is an incredibly complex procedure, and our results show that the so-called '-center-effect-' is a very real phenomenon: Hospitals that do more, do them better," says study senior investigator and transplant surgeon Ashish Shah, M.D., who has performed over 100 lung transplants in the past decade "For best patient outcomes, you need the right staff operating at peak skill level, with patient support systems ingrained in both their clinical operations and their organization's culture."

More than 1,400 lung transplants occurred in the United States in 2007, the last full year for which statistics are available. Thirty-nine percent of patients have survived for at least a year; 6 percent died within a month of surgery. Another 2,000 Americans remain on lung waiting lists, while 90 more are waiting for both a heart and lung.

Shah, an associate professor at the Johns Hopkins University School of Medicine and its Heart and Vascular Institute, says lung transplantation is unlike other kinds of transplant surgery. The lungs are at increased risk of infection during the procedure because the organ is exposed to the outside air and potential bacteria. Recuperation also takes longer than with other types of organ transplant, such as kidney, with patients often spending up to a week in post-surgical intensive care, plus many more months of specialized physical therapy.

The actual surgery, he points out, can cost $150,000 to $300,000 and involves a team of roughly 20 specially trained personnel, such as surgeons, an anesthesiologist, critical care specialists, many specially trained nurses, physical, respiratory and speech therapists, and dietitians.

As part of the latest analysis, researchers reviewed 10,494 patient records for all single-lung and double-lung transplants performed in the United States and Canada from 1998 to 2007. The data came from the United Network for Organ Sharing (UNOS), a national network that allocates donated organs across the country.

"Our findings do not mean that only high-volume centers should perform lung transplantation," says lead study investigator Eric Weiss, M.D., a postdoctoral research fellow in cardiac surgery at Hopkins

"But it does mean that patients should consider consistently high volumes when evaluating their choices of where to have their transplant done, and it does mean that lower-volume centers really do need to learn from the higher-volume hospitals, taking a careful look at what they are doing right to raise their survival rates and lower a recipient's chances of dying or suffering complications from surgery," says Weiss.

Weiss also performed a similar analysis of the center-volume effect in heart transplants, presented at the same meeting held last year.

"Our hope is that this evidence will be useful in establishing budgets and staffing objectives so that low-volume centers, too, can steadily improve their patient outcomes in lung transplantations," says Shah.

Roughly 20 institutions perform 20 or more lung transplants annually, on average. They include The Johns Hopkins Hospital, with 25 in 2006, 21 in 2007 and 15 in 2008. On average, one-year survival rates at The Johns Hopkins Hospital, Shah says, have risen consistently with volume increases, from 70 percent in the early 1990s to 95 percent in 2007.

###
Funding for the study was supplied in part by The Johns Hopkins Hospital.

In addition to Shah and Weiss, other Johns Hopkins researchers involved in this study were Robert Meguid, M.D.; Nishant Patel, B.A.; Christian Merlo, M.D., M.P.H.; Jonathan Orens, M.D.; William Baumgartner, M.D.; and John Conte, M.D.

(Presentation title: The center effect in lung transplantation, a volume outcome analysis of over 10,000 cases)

For additional information and video clips, go to:
HopkinsMedicine.org.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Study results soon for Idiopathic Pulmonary Fibrosis (IPF) drug

Back in 1999 & 2000, desperate to stop or reverse the progression of my IPF, I tried to get into a clinical trial with Actimmune but the study was closed to new participants. As it turned out, Actimmune proved ineffective. It now appears that the same drug company, InterMune, has high hopes for their new drug, perfenidone, as an effective treatment against IPF. IPF is one of the major diseases leading to a lung transplant and I'm posting this investor's alert for your information. There could be a glimmer of hope here but the analysts are cautiously waiting to see if the study results will lead to FDA approval in the U.S.

InterMune Investors Eager for Lung-Drug Data

TheStreet.com

InterMune investors are anxiously awaiting findings from two clinical trials that may yield the first blockbuster drug in the company's history.

Within the next week or two, the Brisbane, Calif.-based drug maker is expected to release results from two phase III studies that are testing the drug pirfenidone in patients with idiopathic pulmonary fibrosis, a progressive and fatal lung disease.

The two studies represent high stakes for InterMune and its shareholders. If successful, pirfenidone is likely to become the first drug for idiopathic pulmonary fibrosis (IPF) approved by the U.S. Food and Drug Administration. With well over 200,000 IPF patients in the U.S. and Europe, InterMune could easily transform pirfenidone into a highly profitable drug with more than $1 billion in peak sales.

A failure of the pirfenidone studies would obviously dash those blockbuster dreams and would be the second time that InterMune tried and failed to make a lasting dent in IPF. Without pirfenidone, InterMune loses its best and nearest-term shot at becoming a profitable drug company, forcing shareholders to wait years more to see if the company's nascent hepatitis C drug program pans out.

InterMune shares were up 2.3% to $11.25 in recent trading. The stock is up about almost 30% since the middle of January.

IPF is a disease marked by scarring of the lungs caused by the gradual buildup of fibrous tissue. As the fibrotic scar tissue accumulates, air sacs in the lungs lose their ability to transfer oxygen into the bloodstream. There are no effective treatments for IPF, and unless patients can undergo a successful lung transplant, they eventual die of the disease.

In 2002 and 2003, InterMune was on track to generate around $200 million annually in sales from another drug, Actimmune, which was FDA-approved as a treatment for two rare genetic diseases but garnered nearly all its sales from doctors who used the drug "off label" to treat IPF patients.

A phase III study of Actimmune in IPF patients failed in 2002, yet doctors, at InterMune's urging, continued to prescribe the drug to IPF patients. In 2006, InterMune settled a federal lawsuit that alleged the company illegally marketed Actimmune as an IPF treatment. In 2008, InterMune's CEO at the time, Scott Harkonen, was indicted for wire fraud and criminal violations of FDA law.

Today, the IPF community has largely abandoned Actimmune. The drug's sales to InterMune totaled just $27 million through the first nine months of 2008.

Enter pirfenidone. InterMune has greater confidence this time around because there is more clinical evidence to support pirfenidone as an effective treatment against IPF.

The drug is approved for IPF in Japan. Last year, Japanese drug maker Shionogi & Co. won pirfenidone's approval there based on two successful clinical studies, including one pivotal phase III study in which pirfenidone was shown to significantly slow the decline in lung function and disease progression of IPF patients compared to patients treated with a placebo. Read the full alert with links to stock quotes, etc: TheStreet.com

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Organ Transplant costs & financial assistance in the U.S.

I receive many requests from the U.S. asking for help in finding financial assistance with costs associated with organ and tissue transplants. These requests are usually not from the patient but from their loved ones who feel a need to help. I refer them to the National Foundation for Transplants whose mandate is to help transplant patients overcome the financial obstacles to a second chance at life.

For help with prescription drugs I refer people to Partnership for Prescription Assistance. Partnership for Prescription Assistance has helped millions of patients get financial assistance with their drugs.

The following data is taken from the National Foundation for Transplants home page and will give you some idea of what to expect in the way of organ transplant expenses.

How much does an organ transplant cost?

The cost of organ transplants varies greatly, not only with the type of transplant, but with the hospital where the procedure occurs. In addition, costs will climb greatly if the patient develops complications resulting in longer hospital stays. The costs below are broad averages for costs of various types of transplants, based on NFT’s experiences of working with patients all over the country. These costs are only for typical hospital and physician fees. They do not include any pre-transplant or follow-up treatments.

• Heart: $650,000


• Lung: $400,000


• Double Lung: $550,000


• Heart/Lung: $875,000


• Liver: $520,000


• Kidney: $250,000


• Pancreas: $300,000


• Kidney/Pancreas: $370,000


• Kidney/Heart: $760,000


• Liver/Kidney: $660,000


• Intestine: $900,000


• Bone Marrow (autologous): $270,000


• Bone Marrow (allogeneic related): $480,000


• Bone Marrow (allogeneic unrelated): $600,000


• Cornea: $23,300

What are some of the other major costs faced by transplant candidates and recipients?

Some of the other major costs include pre-transplant evaluations, dental work required before transplant, treatment of the underlying disease while waiting to be transplanted, donor matching (particularly for bone marrow transplants), travel, food and lodging costs for the patient and a care-giver leading up to and following the transplant (when the transplant takes place in another city), post transplant follow-up and treatment, the essential anti-rejections medications which organ recipients must take every day for the rest of their lives, and treatment for problems caused as a result of side effects from these medications.

Source: National Foundation for Transplants

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Hundreds of British transplant organs given to foreign patients

The organs of nearly 700 British donors have been given to foreign patients, new figures reveal.

By Patrick Sawer Telegraph.co.uk.

The controversial practice has seen patients from as far afield as China fly in for operations at NHS hospitals around the country.

The procedures have taken place despite a severe shortage of organs for transplant in the UK, putting British patients' lives at risk.

Nearly 8,000 people are currently on NHS waiting lists for a transplant, with 305 waiting for a liver and 226 for a lung.

Patient groups and politicians condemned the practice of making organs available to foreigners while so many British patients remain on waiting lists.

The Conservative shadow minister for health, Stephen O'Brien MP, said: "This is not about being xenophobic, but when there is such a shortage of available organs we first need to ensure that we can provide for British patients.

"Ministers must answer the serious questions at stake here. Why, when their organ donation policies are failing, have they presided over so many organs going to people living outside the UK?"

The figures, obtained by Mr O'Brien through a Parliamentary question, show that between 1998 and 2008, around 70 British organs have been transplanted into foreign nationals every year.

A total of that 603 livers have been given to foreigners over the ten year period, as well as 57 corneas, five kidneys and four hearts.

At the same time, only 140 foreign organs were imported into the UK to be transplanted into British patients.

Britain is obliged by European Union rules to make British organs available to all EU nationals. Non-EU nationals are only entitled to an organ if there are no suitable British or EU patients.

Among the foreigners given British organs in the past two years were 40 from Greece and Cyprus, as well as a number from Libya, the United Arab Emirates, China and Israel.

Most of the operations took place at Leeds Teaching Hospital, King's College Hospital and the Royal Free Hospital, both in London, with others taking place at Cambridge University Hospital, Moorfields Eye Hospital, in London, and University Hospital, in Birmingham.

The Healthcare Commission investigated the matter in 2008 after being alerted to the number of operations being carried out at King's College Hospital, but found that no rules were being broken.

However, the British Transplantation Society has criticised the practice.

Its president, Professor Peter Friend, said: "While there is a surfeit of UK residents awaiting transplant it is correct that these patients should have priority. Were the situation such that there were organs that were not required, it would be appropriate to make them available to other nationals

"We do not have a European organ donation system. It is a UK system and I therefore feel that the system is there essentially for the benefit of residents in the UK."

Among the foreign patients who have benefited from the practice is 67-year old Panayotis Papoutsis, a mechanical engineer for the Greek Public Power Corporation (PPC), who underwent a successful liver transplant at the Royal Free Hospital in 2004.

Mr Papoutsis, a former merchant seaman, said: "I will be eternally grateful to the Greek and British hospital system, and especially to the British family of the donor. I carry part of an Englishman inside me, so that will for ever keep me close to that country."

He decided to come to Britain for the operation as a way of by-passing Greek waiting lists.

Mr Papoutsis said: ""I got on the list in Greece, but could not find a quick solution, so I also tried in England. There the reception and treatment I received was excellent. I will never forget it.

"I visited three times before the operation was actually done. During my second visit to London I went through tests and was approved. Then I waited. Suddenly I got a call from London. The opportunity had arisen. There was a donor. In one week it was all done after a wait in Greece and England that had lasted six months."

But Jane Dodd, whose nine-year-old daughter Rebecca died while waiting for a similar liver transplant, has spoken out against organs being made available to foreigners when British people are still on the waiting list.

"I do feel that organs donated in this country should go to people from this country unless there isn't a suitable recipient," she said.

Mrs Dodd, who lives in the Wirral, Merseyside and whose 19-year-old son Matthew had his life saved by a liver transplant, added: "If you are signing a donor card in this country you expect someone from this country to get the organ."

The Department of Health last night announced it was clamping down on hospitals carrying out transplant on non-EU patients in cases when a suitable British recipient could have been found.

A spokesman said: "We recognise that this is complex area and will work with NHS Blood and Transplant and the Transplant community to provide further clarification."

He added: "The transplantation of donated organs into non-UK EU residents who qualify for NHS treatment is lawful. This is guided by European law which effectively regards such patients as having equal access to the NHS.

"Decisions over accepting a patient onto the transplant waiting list and allocating an available liver rests with the individual transplant centre.

"They must always give priority to those waiting on the national list of super urgent patients. The criteria for selecting an appropriate recipient of a donated organ includes the patient's blood group, size and severity of their condition."

A spokesman for the Royal Free Hampstead Trust said of 134 liver transplants carried out in the last 2 years, 120 went to UK citizens, and said EU citizens had the same rights to donated organs as British patients under European law.

Under the system all EU patients are treated in order of clinical priority, which means that a patient from the Continent with more urgent need would receive a transplant ahead of a UK citizen.

This could mean EU patients leapfrogging British patients who are less seriously ill.

However, non-EU patients can only be given a transplant if no suitable recipient can be found among the British and EU pool.

One year old Ethan Collins could die within weeks if he does not receive a new liver and intestine.
Ethan, who was born prematurely, has spent all but one day of his life in hospital, on a waiting list for an intestinal transplant and has now developed severe liver disease.

Ethan, who is in Booth Hall children’s hospital in Manchester, is one of 259 British patients waiting for a liver.

His parents are horrified at the idea that an organ which could save him could go to a patient from another country. They are also fearful that public outrage over the issue could lead some people to remove their names from the organ registry.

Ethan’s mother Donna from Whitefield, in Mancheter said: “If I found out that someone from another country had got one and it could have gone to my son, I wouldn’t be very happy”.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Woman needs lung transplant but finds decision to have it difficult

Like Debbie Mullins, I was in end-stage respiratory failure due to idiopathic pulmonary fibrosis (IPF) and doctors said I would be dead within two years without a lung transplant. I had absolutely no problem deciding to go through with it no matter what; I wanted to live. Yes, there were expenses involved and complications from the drugs, but here I am seven years later still going strong and looking forward to many more years of productive life. But I guess each of us has a different outlook and we have to respect other views.

By Cory Hurley, The Canadian Press
Times & Transcript

CORNER BROOK, Newfoundland - When staring death in the face, a lot can be revealed about oneself.

If that's the case, Debbie Mullins appears to be one extremely strong and inspiring person.

She lost her father, John Smith, to idiopathic pulmonary fibrosis 26 years ago and she watched her brother, Brian, draw his last breath just three years ago. It's been five years since her diagnosis and she said death is only a matter of when.

Pulmonary fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker and causes an irreversible loss of the tissue's ability to transfer oxygen into the bloodstream. Idiopathic refers to no known cause.

Unfortunately, there is also no effective treatment or a cure. Mullins said it is a complicated disease in which even the specialists don't often have all the answers.

When her father, a Corner Brook firefighter, died at age 54 it wasn't believed the disease was hereditary. It was only recently determined that it was. In fact, her co-operation with a genetic study was what led to her diagnosis.

"I know what's coming, so it is just as well to accept it," Mullins said in an interview. "What scares me the most is my family and, if anything was to happen to me right now, they are not ready for it. They think they are, but they're not."

The lifespan for someone symptomatically diagnosed with the disease is usually five to seven years. While Mullins was diagnosed five years ago, it's only been two years that she has been experiencing symptoms, which can include shortness of breath, chronic, dry hacking cough, and fatigue and weakness.

Perfumes and things like scented candles trigger her symptoms. Mullins had to quit her job in a local warehouse and she removed all carpet in her home to avoid as much dust as possible, but mainly she is living a normal life.

"Living life when you don't know what might happen is . . . " she said, not finishing the thought. "I can't live life like that. I refuse to get in a bubble, not move, and not do anything."

She and husband Gerry have one child, Jennifer Brake, and a two-year-old grandson, Brandon. Mullins has a large circle of family and friends who naturally worry, but are also her support network.

"The worst of this is your family," she said. "They look at you if you cough. They are all worried and they are all scared, which they have every right to be, I guess, but I don't look at it that way."

At 53, she said she is full of energy and enjoys the days she spends with her grandson, taking walks and going to bingo.

Mullins has a local doctor she sees regularly, speaks to a research team in St. John's, N.L., often, has video-conferences with doctors in Toronto every four to six months, and has sought out and spoken to others who have the disease or their family members.

She recently returned from Toronto, where a lung transplant assessment determined she was a good candidate. However, that is not necessarily all good news to Mullins.

"Everybody says, 'Good, you can get a transplant and it will give you another five or 10 years of life,'" she said. "But if you see the drugs that I would have to go on after. You need up to $3,000 a month for drugs, depending on which ones you would be on."

Insurance would cover only some of the drugs needed, while others require a special authorization and some are not eligible for coverage at all. But cost is only one of the concerns. She also worries about her quality of life.

"If you live long enough with your transplant, they tell me you are going to end up with a liver transplant or kidney transplant because the drugs will destroy that," she said.

"It is just not so simple as to go and get the transplant. However, this (disease) is scarring up the lungs. It is going to choke you; it is going to kill you."

For a year, Mullins took a number of drugs, which might or might not help halt the progression of the disease. She described the side-effects as "hell" and said she was only too happy when she stopped taking them. However, her disease did progress, showing the drugs were not effective, so she was still left disappointed.

Mullins feels she has a lot of time to make the decision of whether to get the transplant or not. Family members have encouraged her to do so, but she said they, understandably, just want her to live as long as possible.

There is also concern about the transplanted lungs being rejected. She said 80 per cent of transplant patients have lived longer than a year and 50 per cent for five years.

"That's the decision I am trying to make right now," she said. "It's not the transplant that scares me. It don't scare me at all. It's the drugs after. You are so not yourself and I hate not being myself. There are just too many side-effects. ..."

"I don't think I am negative. I know what the end result is going to be -- either you get a transplant and deal with the drugs or you are going to die. When I get to that point, I think I will say, 'Oh, my God, I better try it.' Nobody wants to die and I know that is where it is headed."

Meanwhile, as a wife, mother, grandmother, sister and daughter, Mullins is living life to the fullest.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

EGYPTIAN HEALTH MINISTRY CRACKS DOWN ON ILLEGAL ORGAN TRADE

"...the current (organ donation) law stipulates that both the donor and the recipient be “alive,” limiting the organs that can be donated only to kidney and portions of the liver. The current law also dictates that both patients be Egyptian"

By Yasmine Saleh Daily News - Egypt

CAIRO: The Ministry of Health reported a significant decline in illegal organ transplants since it launched a campaign against the practice in hospitals nationwide, said a ministry official.

Dr Abdel Rahman Shahin, spokesperson for the ministry, told Daily News Egypt that in 2006, a special department was assigned to monitor private hospitals and medical centers in Egypt, where most illegal organ transplants are conducted and a thriving business of organ trading exists.

The ministry has since discovered several violations in well-known private hospitals in the country, he said.

According to Shahin, the current law stipulates that both the donor and the recipient be “alive,” limiting the organs that can be donated only to kidney and portions of the liver.

The current law also dictates that both patients be Egyptian.

According to Shahin, findings from the ministry’s investigation were sent to the public prosecution office.

“Many physicians are under investigation — one of whom received a three-year jail sentence for conducting an illegal organ transplant,” Shahin added.

The increase of such illegal procedures in 2008 — after a slight decline in 2007 — was a stark reminder that the current law needed to be amended, he said.

The Ministry of Health and the Doctors’ Syndicated tabled a draft law to the People’s Assembly, which is currently discussing the proposed amendments.

While the draft law will not directly prohibit organ donation between Muslims and Copts, Shahin said, it will give priority to family members, de facto limiting the occurance of inter-faith transplants.

The proposed law will also create a “waiting list” system, where patients are listed according to the severity of their cases.

One of the amendments proposed in the draft law is to allow non-living donors.

Delaying the PA’s decision on the draft law was the debate around the Sharia definition of death.

“Both the Grand Sheikh of Al-Azhar Mohamed Sayed Tantawy and the Grand Mufti Ali Gomaa agreed that organs from non-living donors are permissible,” Shahin said.

Both agreed that when the brain stops functioning, the patient is considered dead.

On the other hand, the Islamic Research Center (affiliated with Al-Azhar institution) defined death as the complete deportation of life from the human body that is preceded by the failure of all organs.

However, to eliminate all doubt, the Ministry of Health suggested forming an independent committee comprised of doctors, public figures and a judge, to confirm the death of the donor as well as list patients according to their condition.

Under the new law, all organ transplants will be conducted in public hospitals so the ministry can monitor the procedure.

The new law will penalize doctors who perform illegal organ transplants, who will be subject to a maximum sentence of 15 years in jail. “The current law’s maximum penalty was a three-year jail sentence,” Shahin said.

Moreover, the hospitals or medical centers allowing illegal operations may be fined up to LE 1 million and can be shut down, he added.

While the law is being discussed in the PA, Shahin said, the minister of health issued a new decision to monitor organ transplants, making it obligatory for the donor and recipient to get approval from the Ministry of Health and the Doctors’ Syndicate.

The PA is expected to approve the draft law next April, Shahin said.

Last November, as part of its crackdown on the illegal business of organ trading, the Ministry of Health made spot checks on hospitals around Egypt.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

UK donors up but organs still short

BBC News Channel

The number of people on the organ donor register in the UK has hit a record 16 million, meeting a government target of doubling 2001's numbers a year early.

However, the gap between supply and demand for organs is still growing and 1,000 people are expected to die this year while waiting for a transplant.

The NHS figures show people in Scotland and the south-west of England are the most willing to become donors.

It is thought the debate on presumed consent may have boosted numbers.

The idea of introducing presumed consent, under which people would be placed on the organ donor register automatically unless they "opted out", was rejected last year by a panel of experts appointed by the government.

They said such a move was unlikely to increase donor numbers and posed a significant risk of eroding patient trust.

Instead, a £4.5m ($6.2 million U.S.) public awareness campaign is to be launched in England aimed at boosting voluntary donor numbers.

More than one in four people in the UK are now on the donor register.

But, despite the rise in numbers, the UK still has one of the lowest organ donation rates in Europe.

Since 2001, nearly 24,000 transplants have been carried out using donor organs, but at least 4,500 people have died while waiting for a suitable organ to become available.

This year, about 1,000 people are expected to die waiting for an organ.

There is a particular shortage of organs for black and Asian patients, who on average wait about three or four times longer for an organ than white patients, according to NHS Blood and Transplant (NHSBT).

Organ donor register rates are, at 32%, highest in the health regions that cover Scotland and south-west England, followed by the south-east coastal area of England at 30%, according to figures collated by NHSBT.

Lynda Hamlyn, the body's chief executive, said: "Reaching 16 million on the NHS Organ Donor Register a year before planned is testament to the support that exists for donation in the UK.

"More than a quarter of the population have demonstrated their commitment by signing the register.

"But, with almost 8,000 people in the UK currently waiting for a life-saving organ transplant, we need to do more."

NHSBT said it was looking at draft plans to try to increase the number of organ donors by a further nine million by 2013.

A spokesman said this was "a challenging target that we cannot achieve without a huge amount of public support".

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Research Study Looks At Alternative to Heart Transplant

TheBostonChannel.com

By Michael Lasalandra
Beth Israel Deaconess Medical Center Correspondent

About 1.2 million Americans suffer heart attacks each year, with about 450,000 of them dying as a result. Of those who survive the initial attack, 400,000 end up with heart damage so severe that the heart cannot pump enough blood to meet the body’s needs.

While the condition, known as congestive heart failure, can often be managed with medications, about half of all sufferers still die within five years. For some, heart transplantation is the only option.

But only about 2,200 patients get heart transplants every year. There are always about 3,000 patients on a waiting list for a new heart. And those lucky enough to get transplants must take drugs that suppress their immune systems for the rest of their lives. The drugs come with a host of serious side effects.

Now, researchers at Beth Israel Deaconess Medical Center are investigating another option that may allow those suffering congestive heart failure to repair their damaged hearts -- using tissue taken from those very hearts themselves.

“This could be a better way,” says Dr. Roger Laham, Director of Basic Angioplasty Research at BIDMC. “Congestive heart failure is the leading cause of morbidity if not mortality in the U.S. We have effective ways to treat patients with heart attacks. They usually survive, but they have suffered damage to the heart. Years later, they develop heart failure. Their lungs fill up with fluid. They die of sudden death.”

Dr. Laham’s team has developed a method to transplant tissue from areas of the heart that are not damaged to areas that are damaged. “There are always areas of the heart that are preserved,” he says.

In animal studies, the technique proved remarkably successful.

“We were surprised by the result,” he says. “We were able to reduce the size of the heart attack (damage), improve the function of the heart and improve the cells inside the heart itself.”

Function improved by about 25 percent.

Human studies are expected to get underway within six months.

“We’re very excited about it,” says Dr. Laham, whose research team has been working on finding ways to get the heart muscle to regenerate itself for the past eight years. The initial idea was to take cells from the blood and bone marrow and deliver them to the damaged heart muscle. Later, they decided to also try taking pieces of sections of the healthy heart muscle itself and transplant them into the damaged parts of the muscle. The heart and brain are known as the only two organs that cannot regenerate themselves on their own when damaged.

The pieces taken from the healthy sections of muscle are removed much as they are for biopsy. Six or seven small pieces each about the size of a matchhead are removed and transplanted into damaged sections. The transplanted tissues repair the damaged tissues by delivering not only healthy tissue, but also stem cells and proteins needed for regeneration.

Access is by catheter, so there is no open-heart surgery required.

Details on the process were revealed at recent meetings of the American Heart Association and American College of Cardiology. A paper has been submitted to the journal Circulation.

Above content provided by Beth Israel Deaconess Medical Center.
For advice about your medical care, consult your doctor.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

New hope for organ recipients

Wouldn't it be wonderful if organ recipients did not have to worry about their immune systems rejecting their new organs? Maybe some day in the future a treatment will be developed to prevent rejection and this article offers hope for one potential solution.

By Danny Rose, Medical Writer theage.com.au

Australian scientists have stumbled across a "weird" effect within the immune system that offers hope of a new treatment to help transplant recipients accept their donor organs.

Researchers at Sydney's Garvan Institute set out to investigate how inflammation works in transplants with an experiment using the immune system's most powerful "activator" - a hormone called B cell activating factor or BAFF.

Mice were genetically engineered to produce large amounts of BAFF, in the expectation studies would show how their boosted immune systems would rapidly reject any foreign tissue.

But the exact opposite happened, as the mice accepted their tissue transplants without the need for conventional treatment to suppress the immune system.

"I went to my boss and said `Hey, look at this. This is really weird'," Garvan Institute masters student Stacey Walters said of the moment she made the discovery.

Dr Shane Grey, of the institute's Immunology and Inflammation Program, said he and fellow scientists were "floored".

"Trolling through the scientific literature would make you think `Wow, this BAFF molecule is a very powerful activator of the immune system'," he said.

"To come out with a finding to say that having more of it prevents inflammation, and stops T cells from destroying tissues, at the outset it seems so surprising."

T cells are white blood cells that play a direct role in killing off foreign tissue, and Dr Grey said it seemed the extra BAFF - which led to a higher number of regulating B cells in the blood - had increased T cell tolerance.

The surprise discovery could lead to a targeted treatment for organ transplant recipients, as conventional methods suppress the whole immune system and place already sick people at risk of further illness.

"What we'd like to be able to do is say here's your organ graft and here's some therapies that actually modulate the immune system that is attacking (it)," Dr Grey said.

"But everything else is still working fine - you still have a viral response, you're still making antibodies, you can still clear other infections.

"This provides a lot of hope to say these strategies will happen."

The findings are published in the Journal of Immunology.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Heart & Lung Transplant recipient overcomes health hurdles to run marathons

Mark Black

By Richard Amery - Lethbridge Herald

Motivational speaker Mark Black has never been one to let life’s hurdles slow him down — not even a huge hurdle like a heart and lung-transplant he received in 2002. After the successful operation in Ontario, Black ran his first half-marathon Halifax in 2004, then a full marathon in 2005, followed by several others.

“Most people fall short of what they can accomplish,” Black said from his Moncton home, Sunday. The 29-year-old motivational speaker is in Lethbridge to speak to the Runner’s Soul Marathon Club registration night, tonight at the Yates Memorial Centre at 7 p.m. — the first stop on a quick Western Canadian swing this week.

“I don’t think I’m special at all, I just hope people will push themselves to do what they are capable of,” he said.

Born with a congenital heart defect, he underwent emergency surgery when he was a day old. He recovered from that and then got heavily into school sports such as basketball, soccer and badminton. But when he was 13, his doctors told him to slow down. That lead the goal-focused young man to focus on drama. He took an English degree at Mount Allison University in Sackville, Ont. and then decided to be a teacher. However, midway through his education degree at age 22, he noticed he was tired all the time.

“Before I was very busy and active,” he said.

He added he could barely walk up stairs, and went to see the doctor who discovered he needed a heart transplant. Due to complications, they couldn’t just replace his heart, they had to replace his lungs, as well. So his doctors added him to the transplant list.

“I just slowly deteriorated. I could do day-to-day things like walk and eat, but not much else. I just noticed I was really tired.”

Because of that, his doctors recommended he not be a teacher as he would be exposed to too many germs.

“It was certainly a big change and adjustment,” he said.

After the transplant, he decided to train for a marathon through the Running Room, partially for the social aspect, but also to motivate him to exercise.

“I don’t have enough self-discipline to just exercise for my health. I need a goal to pursue,” he said.

His current goals are making his motivational speaking business a success, and more importantly to be a good dad to his newborn daughter and a good husband to his wife.

“Just being there for them. It’s a different type of goal. Having a daughter really changes the way you look at life. Having a baby creates a whole new set of priorities,” he said.

His doctors have advised him it is all right to push himself. In fact, he may start training for another marathon.

“They’ve reassured me it’s not dangerous,” he said.

The most important lesson he has learned from his experience is to never give up.

“A lot have people have run marathons and they all know there is a point in it where you just want to give up, but the end result is worth it. If you refuse to give up, you win. The ones who fail are the ones who quit,” he said.

“I’d rather die trying than quit. And here it is seven years later and I wouldn’t trade the last seven years for anything,” he emphasized adding there isn’t a day that he doesn’t thank his organ donors. He advised everyone considering being an organ donor to inform their families and friends about their wishes before the fact.

“I don’t know if I had a year if I could express my feelings. I’d tell them what I’ve done with their gifts that have given me a second chance. I’m never going to know who they are, but it’s not like there’s a day I’m not thinking about them.”

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Japanese hospital attempts first heart-lung transplant

The Japan Times

Suitable donor match gives Osaka University Hospital green light to attempt first operation of its type in Japan

"The operation is the 79th in Japan to use organs from a brain-dead person based on the Organ Transplant Law, which took effect in October 1997"

Kyodo News - The first combined heart and lung transplant in Japan began Saturday evening at Osaka University Hospital, the Tokyo-based Japan Organ Transplant Network said.

The organs were provided by a man in his 30s declared brain dead Friday at Hyogo Emergency Medical Center in Kobe, where he was being treated for head injuries. They will be transplanted into a man, also in his 30s, at Osaka University Hospital in Suita, Osaka Prefecture, a network official said.

Earlier in the day, the man's heart and lungs were removed for transport to Osaka University Hospital.

The recipient was carefully chosen from a waiting list, and donor's heart and lungs had to be put through a strict screening process to ensure they were suitable for the operation, which was scheduled to end Saturday night.

The waiting list for heart-lung transplants began in 2003, but the network has given up on past operations because it was unable to confirm that organs were suitable.

In addition, the donor's liver will be given a man in his 50s in Fukuoka, while the pancreas and a kidney will go to a woman in her 40s in Tokyo and the other kidney will go to a man in his 50s in Nishinomiya, Hyogo Prefecture, the official said.

The donor also was willing to give up his small intestine, but the network said it couldn't find a suitable recipient.

The operation is the 79th in Japan to use organs from a brain-dead person based on the Organ Transplant Law, which took effect in October 1997.

The network said there are about 120 patients waiting for hearts and around the same number for lungs, but that four, including the patient at Osaka University Hospital, are in need of both organs.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Pass on the gift of life as an organ donor

Editorial in The Imperial Republican

By Russ Pankonin, The Imperial Republican Co-Publisher

In 1984, two-year-old Matthew Bemis of Rising City wandered away from a family barbecue and fell into a lake. Despite efforts to save him, Matthew was declared brain dead by doctors.

Still in the grips of grief from losing their son, his parents made the decision to donate Matthew’s organs. The recovery of his liver for transplant was the first ever in Nebraska.

At the same time in Tucson, Ariz., a one-year-old girl named Lily was fighting for her life. She was suffering from a benign liver tumor that was squeezing the life out of her.

Fluid had built up in her body and she was no longer able to breathe on her own. Her tumor-filled liver accounted for 12 of Lily’s 25 pounds.

Through the generosity of Matthew’s parents, Milt and Janis, Lily got the life-saving organ her parents had prayed for.

Today, Lily is a healthy young woman who has graduated from college. And on the 24th anniversary of her transplant, she got married.

About a year after the transplant, the two families met. Over the years, the families have stayed in contact and remained close.

This past August, the Bemis family traveled to New York to be part of the wedding and the special event in Lily’s life. While it was a bittersweet moment for the Bemis family, they were happy to see the memory of their son extended through the life of Lily.

What a story!

Today, there are more than 100,500 people in the U.S. awaiting an organ transplant, with a new name added to the list every 11 minutes. But every day, 20 people die while awaiting a life-saving organ transplant.

How can you help? You can make a difference by signing up to become an organ donor, and signing up is easy to do.

You can consent to become a donor when applying for or renewing your driver’s license. You can sign a donor card and carry it with you. Or, you can sign up online at the Nebraska Donor Registry.

Signing a donor card means your decision will be honored without any additional family consent. However, it’s wise to tell your family so they can understand and support your decision.

Through organ and tissue donation, we have the potential to save eight lives and enhance the lives of 60 others.

In death, you can give the most precious gift ever—life!

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Gift of Life Celebrates 35th Anniversary as National Leader in Organ Donation

Congratulations to Gift of Life, which is the organ procurement organization for eastern Pennsylvania, southern New Jersey and Delaware. I have had the pleasure of meeting some of the people who work at Gift of Life and their commitment and dedication to organ and tissue donation is inspiring.

The Earth Times

PHILADELPHIA, Jan. 15 /PRNewswire-USNewswire/ -- Paulie Penkala might have been the toughest kid on the football field, but he spent his life helping others and had aspirations of continuing that after he graduated high school. For a 16-year-old from Hazleton, Pa. to be contemplating missionary work or the Peace Corps is certainly unique. But as his father Paul Sr. talked about it, his son's aspirations seemed like the perfect fit.

"I always used to tell him, 'you're a catalyst - when you're around, good things happen,'" the father remembered. "He was quiet, but he always had a smile, and always was there to help. He liked to right the wrongs."

That is why Paulie's father knew his son would have been proud to be an organ and tissue donor and have the ability to save lives. Paulie passed away on October 3, 2008 following a car accident, and the generosity he and his family exhibited - including mother Diane and sisters Nicole, Rhiannon and Lucy - helped save five lives and provide hope to others. Knowing that Paulie was able to help others has comforted his family and allowed them to find some meaning in his death. It also reminds them of Paulie's focus on doing the right thing and thinking of others.

As with every transplant done in this region, it is only possible through the generosity of the donors and their families, who continue to make the decision to save or enhance lives through organ and tissue donation.

And in 2008, they did so in record numbers. In 2008, the gifts given by 428 generous organ donors allowed Gift of Life Donor Program - the organ procurement organization for eastern Pennsylvania, southern New Jersey and Delaware - to coordinate a total of 1,152 life-saving transplants over the course of the year. Gift of Life and its hospital partners lead the U.S. in the number of donors for the year, furthering this region's commitment to patients in this region and remaining a national leader in donation and transplantation.

Also unprecedented were the number of tissue donations given over the past 12 months, with more than 1,900 tissue donors. The gifts recovered from these generous donors provided 878 gifts of bone, which can help rebuild a damaged limb and save it from amputation, 1,752 cornea donations, which can be used to restore vision, and countless other tissue recoveries that will greatly improve the life of thousands of tissue recipients.

This record-breaking success comes as Gift of Life celebrates its 35th anniversary in 2009.

"We continue to see such a strong commitment from the people in this region, showing their dedication to saving lives in record numbers," said Gift of Life President and CEO Howard M. Nathan. "But our true success is giving second chances to the more than 1,100 patients in 2008, because of the inspirational acts of donors and their loved ones.

Additionally, 2008 proved to be a very successful year in other facets of the organization. In 2008, Gift of Life was proud to recognize the work of all of our hospital partners who help support donation and worked diligently to ensure every family has the opportunity to donate. The outstanding efforts of 18 of these hospitals were honored with Medals of Honor from the federal Department of Health and Human Services this past October - the most hospitals of any region in the nation.

New Jersey also took a significant step toward fostering greater education about donation within its state while making it easier for residents to become donors. On July 22, Acting Governor Richard J. Codey signed into law the New Jersey Hero Act, a groundbreaking piece of legislation that would help foster a greater understanding of donation while also empowering state residents with the means to say yes to organ and tissue donation. The proposal has two components - one that would create a curriculum about donation that would be taught throughout state high schools, and the other that would focus residents on saying "Yes" to donation. An online registry for residents to add the donor designation will be in place by April of this year.

On the public awareness end, 2008 saw Gift of Life organize its most successful Dash for Organ Donor Awareness to date, with more than 5,000 people participating. Success was also the name of the game for Team Philadelphia, which rallied the largest team at the 2008 U.S. Transplant Games in Pittsburgh, coming home with the most medals in the history of the Games.

2008 also marked development on the Gift of Life Family House, a new Ronald McDonald House-type program being designed for out-of-town families with a loved one who is a patient at an area hospital awaiting transplant, patients being evaluated or receiving follow-up care after a transplant, and those giving the gift of life as living organ donors. This year will serve as a springboard for the formal capital campaign focused on raising the necessary funds to support this critically needed project. To date, meal and food programs are being introduced by the Family House with local transplant centers to provide comfort and support to the families of patients awaiting transplant.

Gift of Life's work is far from complete, however, and 2009 will see a continued focus on more lives being saved. Currently, more than 6,000 people in Gift of Life's service region still await organ transplants, joining more than 100,000 patients remain on the transplant waiting list nationwide.

Since 1974, Gift of Life has served as the link between donors and patients awaiting life-saving transplants in the eastern half of Pennsylvania, southern New Jersey and Delaware. In that tenure, the OPO has coordinated more than 27,000 life-saving organ transplants and hundreds of thousands of tissue transplants. For more information on organ and tissue donation, please call Gift of Life at 1-800-DONORS-1 (1-800-366-6771) or visit our website at http://www.donors1.org.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Double lung transplant patient plans anniversary charity night

Ken Mackie in hospital five days after his double lung transplant

By the Evening Leader UK

A Flintshire chef who underwent a double lung transplant is to hold a charity night on the anniversary of the operation.

Father-of-one Ken Mackie, 37, from Buckley, Flintshire, is organising the event a year after he went under the knife to help relieve the effects of his cystic fibrosis.

He plans to celebrate a year of good health and to remember the young man who gave him a second chance at life.

Ken, who was diagnosed with the condition at the age of 21, said: "We will hold a murder mystery night at my former workplace, the Druid Inn in Pontblyddyn, to raise money for the CF Trust and the New Start transplant unit at Wythenshawe hospital, where I had my transplant, on January 22, 2008."

Ken was put on the transplant list on January 15 last year, and waited just a week to find a match.

Since the operation, the former head chef no longer suffers with the symptoms of CF, which affected his lungs, but still deals every day with pancreatic problems, diabetes, high cholesterol and high blood pressure.

"This time last year I was in and out of hospital, in very poor health," said Ken, who lives with his family on Mayfield Drive, Buckley.

"We usually get the video camera out on Christmas Day and this was the first year that I wasn't coughing in the background. It's unbelievable how much better I feel now."

The young father says he has now pledged to make people aware of not only CF but of the importance of donor cards.

"The night won't just be a way to raise money for charity and to celebrate my year of health, but it will be a way to commemorate the young man who died and donated me a healthy set of lungs, and to think of the family who lost their son," said Ken.

"After all these years of suffering with CF, they have given me the thing I have always wanted – to be able to walk my little boy to school – and after the transplant, now I can.

"I have had lots of support from the local people and from local businesses for the night and Southdown Primary School have been particularly generous and donated £260 to the two nominated charities."

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

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Post heart transplant mortality seen higher with pretransplant ventricular assist device support

A bridge too far? Posttransplant mortality seen higher with pretransplant VAD support

By Steve Stiles theheart.org

Worcester and Boston, MA - Transplant-listed patients supported on a ventricular assist device (VAD) while awaiting a donor heart are more likely to die within the first six months after the surgery than transplanted patients who hadn't been bridged with a VAD, according to an analysis based on United Network for Organ Sharing (UNOS) data that date from several years to more than a decade ago [1]. The mortality increase in bridged patients dissipated after the six-month posttransplant period but appeared again five years later.

Given these findings, according to the authors, led by Dr Vishnu Patlolla (University of Massachusetts Medical School, Worcester), "we cannot recommend VAD implantation with a view to improving posttransplant survival for patients who are stable on intravenous inotropic therapy."

The group goes on to acknowledge that their data are based on early-generation pulsatile-pump VADs and can't be extrapolated to the newer continuous-flow models, "which are gaining popularity."

Their analysis appears in the January 20, 2008 issue of the Journal of the American College of Cardiology.

In an accompanying editorial [2], Dr Leslie Miller (Washington Hospital Center, Washington, DC) notes that the continuous-flow VADs "have been shown to have significantly better survival and quality of life and significantly lower adverse events than the previous generation of pulsatile devices."

Moreover, he writes, "the outcomes with medical therapy of status-1 patients with and without VAD support have improved over the past five years, and a more recent examination of the data would be helpful in determining whether the observations made are accurate in the current era."

Another expert in this patient population, Dr Randall C Starling (Cleveland Clinic, OH), said to heartwire that the report from Patlolla et al "is thought-provoking and hypothesis-generating," but he doesn't believe it will change practice at his institution. "I think it's going to raise questions, but it's not going to answer questions."

In the analysis of adults undergoing first-time, single-organ heart transplantation in the US from 1995 to 2004, 1433 patients were bridged with intracorporeal VADs (including devices from Thoratec Corp and WorldHeart) and 448 were bridged with extracorporeal VADs (including devices from Thoratec and Abiomed). They were compared with 9455 transplant candidates classified as UNOS status 1 who were not bridged with a VAD. The median follow-up times were 36.5, 24.4, and 49 months, respectively.

For a table of hazard ratios and references to other studies that question the validity of these findings read the full article.

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Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Bioethicists Save Organ Donation by Tweaking the Definition of Death

Hospital Bed - Image: Flickr/Rodrigo Basaure

By Brandon Keim Wired Science

In response to an emerging moral controversy over whether most vital organs used in transplants are technically taken from living people, the President's Council on Bioethics issued a new report that defines brain death as the cessation of engagement with the world.

The report overturns the current neurological death standard's reliance on an outdated notion of the brain as the body's control center for physiological processes.

The Council's definition of life as a process of engagement, which might sound like so much philosophical mumbo-jumbo, could keep the number of organ transplants from plummeting.

"One is faced with a choice of saying that the notion of brain death doesn't work, and since you're not supposed to take organs from a donor until they're dead, we have to stop doing a lot of transplantation — or you can find a better explanation for why total brain failure constitutes the death of an organism," said Gilbert Meilaender, a Valparaiso University bioethicist and Council member. "We offer a better philosophical explanation."

That the line between life and death could be so blurry is a uniquely modern phenomenon. Until the mid-20th century, it was clear: when a person's heart stopped beating, they were dead. But advances in medical technology allowed people to be sustained on machines that kept their lungs pumping and heart beating, though the necessary brain functions had ceased.

Doctors and bioethicists proposed a new standard: if both high- and low-level brain function stopped in a person, and could never be recovered, they were dead, even though machines preserved an appearance of life. A body in this condition is, in medical parlance, a "ventilated, heart-beating cadaver" — and these cadavers are the primary source of vital organs used in transplantation.

In recent years, however, scientists have shown that brain-dead bodies continue to maintain a stable temperature and eliminate waste. More poignantly, their wounds heal, and children kept on ventilators become sexually mature.

These findings undermine the current neurological death standard, which treats the brain as key to integrating and sustaining basic physical processes. Since these processes continue in the absence of brain function, doctors are confronted with three choices: remove organs from a person still technically alive; loosen the standards of brain death; or revert to the old-fashioned standard of cardiac death.

According to the Council's redefinition, the brain is important not because it controls physiological processes, but because of what these processes represent: engagement with the world.

None of these choices is palatable. Taking organs from a living person is ethically unacceptable. Easing standards — focusing purely on higher brain functions, and designating as dead people who are still able to breathe on their own — would also be, to many people, unethical. And reverting to cardiac death standards would require doctors to wait for hearts to stop beating before removing organs.

Even just a few minutes' interruption of blood flow can cause damage that makes vital organs unusable in another body. Making cardiac cessation the measure of death would would drastically curtail modern organ donation.

"If we're right, and there continues to be a persuasive argument to support the neurological standard, then organ transplanation on the scale we continue to do it is a legitimate thing to do," said Meilaender.

"We try to think of organisms as engaging in a work of self-preservation. To be living is to be engaged in that work. To die is to cease to be engaged," said Meilaender.

Engagement, explains the Council, takes three forms: openness to the world, an ability to act on the world, and the need to do so. These abstract requirements can be met by something as basic as breathing — but they are not met by physiological activities that continue in people who have lost all neurological function.

The Council's report conscientiously navigates murky ethical and scientific terrain said University of Pennsylvania bioethicist Art Caplan. "They reaffirm brain death as an acceptable standard — and I think they succeed."

Caplan stressed that people in minimally conscious and persistent vegetative states — such as Terry Schiavo, whose contested removal from life support catalyzed public opposition to expanding definitions of death — will still qualify as living.

"People are getting nervous that we're pushing the standard of death in order to get organs. The public is afraid that surgeons in search of organs for transplant will bend the definition of death to get them," said Caplan. "This report keeps that bright line in place."

"There are people who want to argue that we should define death in terms of higher brain capacities — that if you lose the capacity for consciousness, we should regard you as dead, though you're breathing without assistance," said Meilaender. "But suppose we have a body like that. I wouldn't bury it. It's lost some human capcities, but it's not ceased to be a living being."

Citation: Controversies in the Determination of Death: A White Paper by the President's Council on Bioethics. Jan. 13, 2009.

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

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

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves