Wednesday, December 28, 2011

OPTN/UNOS statement regarding fatal helicopter air accident involving donation, transplant personnel

According to Ocala.com The cause of copter crash that killed 3 men who were flying to Shands in Gainesville, Florida to pick up a heart for transplant is still a mystery and investigators will not have a probable cause of the accident for approximately nine months to a year. UNOS has issued the following statement:

The Organ Procurement and Transplantation Network and United Network for Organ Sharing share in the sorrow of Mayo Clinic Florida and the entire transplant community following news of a fatal helicopter accident on Dec. 26. Two donation and transplant professionals from Mayo Clinic Florida were aboard the flight to recover a donated organ for transplantation. Dr. Luis Bonilla, a cardiac transplant surgeon, and David Hines, an organ procurement technician, lost their lives along with the helicopter pilot, E. Hoke Smith of SK Jets.

Every day of the year, organ donation and transplant professionals are traveling to hospitals to evaluate potential organ offers, recover organs and transport them to transplant centers. While this is a routine practice, the risk of serious or fatal accident can never be eliminated. This risk is known and accepted by dedicated professionals as part of their devotion to saving lives through organ transplantation. At the same time, transplantation is a uniquely collaborative and collegial field. We share bonds of friendship and experience working with each other, and a tragic loss of life in the performance of these duties is felt by all.

We offer our deepest condolences to the loved ones and colleagues of the individuals who lost their lives in the process of saving other lives. We also extend our condolences to the staff and families of Mayo Clinic Florida at this most difficult time.


“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, donatelife.net
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Tuesday, December 27, 2011

Prince Philip taken to Papworth Hospital

Sky News


The Duke of Edinburgh, the 90-year-old husband of Britain's Queen Elizabeth II, has been taken to hospital for 'precautionary tests' after suffering from chest pains.

'His Royal Highness the Duke of Edinburgh was taken to Papworth Hospital in Cambridge from Sandringham House for precautionary tests after experiencing chest pains,' Buckingham Palace said in a statement.

Papworth hospital describes itself as Britain's largest specialist cardiothoracic hospital and treats more than 22,800 inpatient and day cases and 53,400 outpatients each year from across the country.

The duke, also known as Prince Philip, was taken from a family Christmas celebration at the Sandringham estate in Norfolk, southeast England, to the cardiothoracic unit at the nearby hospital on Friday.

The royal family visits Prince Philip

The prince, who was born in Greece in 1921, is well known for his tireless spirit and outspoken views, and rarely misses royal engagements.

On his 90th birthday in June, he announced plans to cut back his official duties.

The colorful and often outspoken husband of Elizabeth has been a familiar figure at his wife's side for decades. He has championed numerous charities over the years, but is advising the ones he heads to start planning an orderly transition as he plots the end of his working life.

Philip has been at Sandringham since Monday for the royal family's Christmas festivities, Buckingham Palace said.

The royals celebrated a traditional Christmas this past weekend, followed by a year's worth of festivities to mark the queen's 60th year on the throne.

Elizabeth and Philip are planning to mark the event with a series of tours throughout England to culminate with a celebration in London in early June that will include an unprecedented pageant on the River Thames with up to 1000 boats taking part.

Most of the senior royals, including Prince William and his wife, now formally known as the Duchess of Cambridge, will be dispatched across the globe to help the ageing monarch celebrate her Diamond Jubilee.

Papworth hospital describes itself as Britain's largest specialist cardiothoracic hospital and treats more than 22,800 inpatient and day cases and 53,400 outpatients each year from across the country.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, donatelife.net
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Monday, December 26, 2011

Stem-cell donation can save a life

Registry in need of donors, especially from individuals in the Asian community
"The donor simply lies on a bed and watches a video for four hours while the machine takes the blood out and spins it in a centrifuge,".... "Stem cells are removed - because they separate on the basis of their weight - and then the rest of the blood comes back. For the donor, it's now an easy procedure, comparatively."

BY ANDREA WOO, VANCOUVER SUN
It began with a lack of appetite. Usually a big eater, in early fall Peter Dart began eating less than he normally did, sometimes telling his family that his stomach didn't feel right.

"I don't feel like eating tonight," he would tell his wife, Bonnie. "Maybe I'll just have a grilled cheese."

Then there was the fatigue. The Delta dad had been napping more, but Bonnie and their two sons, Joe, 19, and Ryan, 25, figured it was perhaps just part of the aging process for the retired marine engineer.

"We thought, 'He's 57 now, maybe he's just tired because of that,' " Bonnie said.

Then there was the sweating. On a late September trip to the family cabin near Greeny Lake, in B.C.'s interior, Peter sweated more than normal - but then again, he was chopping wood and hauling around heavy beams while performing repairs on the cabin.

But as the days passed, symptoms mounted: stomach swelling, vomiting, profuse sweating .

Peter was diagnosed on Oct. 7 with acute mast cell leukemia. He was transferred the same day to Vancouver General Hospital, where doctors immediately began chemotherapy.

Leukemia, a cancer of the blood, begins in the bone marrow with the growth of an abnormal stem cell, explained Dr. John Shepherd, director of the Leukemia/Bone Marrow Transplant program of B.C. The abnormal cells eventually suppress the growth of healthy cells.

Immediate and aggressive treatment is crucial. Left untreated, leukemia can be fatal.

"We have known for many years that while chemotherapy can cure some patients, stem-cell transplant, or bone-mar-row transplant, can cure more," Shepherd said.

While the optimal treatment of years past was bone marrow transplant - often painful for the donor - doctors today opt for peripheral blood stem cell transplantation.

"The donor simply lies on a bed and watches a video for four hours while the machine takes the blood out and spins it in a centrifuge," he said. "Stem cells are removed - because they separate on the basis of their weight - and then the rest of the blood comes back. For the donor, it's now an easy procedure, comparatively."

Perhaps the most challenging part is finding a match. The preferred donor is a matched sibling, but smaller families today mean a patient's chance of being matched with a brother or sister is only about 25 per cent, Shepherd said.

Patients then turn to unrelated donor registries, which comprise roughly 15 million people worldwide. The problem, however, is the vast majority of them are of white, northern European extractions.

"Your genetic type, your immune type - which is what is important for stem-cell trans-plant - follows your ethnic group," Shepherd explained. "For an individual who is of anything other than straight for-ward Anglo-Saxon Caucasian, the chance of finding a donor in the registry is dramatically lower, because those groups are under-represented."

Caucasians make up about 92 per cent of registrants and have about an 80 per cent chance of finding a stem-cell match, according to 2010 statistics. Doctors told Dart that his chance of finding a donor in the registry is "medium."

In comparison, ethnic Chinese have only about a five to 10 per cent chance of finding a match. Shepherd said this is the most under-represented group that he deals with.

For Preston Dong, this is particularly disheartening news. Diagnosed Oct. 25 with acute myeloid leukemia, the 39-year-old Richmond dad is also in need of a stem-cell transplant and recognizes finding a match will be difficult. Two siblings failed to match, and other family and friends have registered, so far with no success.

"Once you find out it's a cancer of the blood, and then you start looking into survival rates, it's like, 'Holy crap,' " Dong said.

Dong had two rounds of chemotherapy and is now in remission. He says the leukemia has not yet affected him physically, but a compromised immune system and lack of general health has kept him indoors - a drastic change from the active, outdoor lifestyle the assistant hockey coach is used to.

Dong and his wife, Sonja, have told their two children - Kurtis, eight, and Hayley, 11 - "as much as we possibly could, with the exception of survival rates and the future," he said.

"We're shielding them from that, a bit, because they don't need to hear that their dad is going to die."

Both Dart and Dong have undergone several rounds of chemotherapy and are now in remission.

On Dec. 11, Peter and Bonnie celebrated their 30th wedding anniversary in hospital.

"He cried because he couldn't give me anything," Bonnie said tearfully.

Both Dong and Dart are awaiting matching potential donors.

"We need to get more donors in the system," Dong said. "It's not an invasive process. The initial step, the mouth swab, is simple to do, and literally, you could save a person's life.

"And ... when it comes time to harvesting the stem cells it's not much more invasive than giving blood."

Canada's national database of potential stem-cell donors is 77 per cent Caucasian, according to Canadian Blood Services' OneMatch Stem Cell and Mar-row Network program. Among the remaining ethnicities, 5.2 per cent are Chinese, 3.6 per cent South Asian, 0.7 per cent black and 0.9 per cent aboriginal. About seven per cent are multi-ethnic.

Dr. Shepherd has heard from Chinese patients that cultural beliefs and ancient perspectives about the body often prevent them from donating, but such views appear to be changing.

Last year, the number of Chinese-Canadians registered as potential stem-cell donors grew 75 per cent after a donor drive by OneMatch in Vancouver and Toronto.

OneMatch, in partnership with OtherHalf Chinese Stem Cell Initiative, will host another drive at Richmond's Aberdeen Centre on Jan. 21. For more information visit www.onematch.ca.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States,donatelife.net
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Friday, December 23, 2011

Using Social Media to Find Organ Transplants

I am pleased to post this guest article by Elaine Hirsch.

Patients in need of organ transplants battle their lives day-to-day waiting for a transplant. Unfortunately, the current process for facilitating organ transplants is inefficient and often unfair; patients must be sick enough to qualify for an organ but not so sick that the transplant procedure itself might kill them. With over 100,000 people in the United States waiting for an organ, the risks of dying before organ transplant are all too real. Experts, including PhD program professor and author Steven Levitt have been very vocal about the need for reform in the organ transplant market.Some people waiting for organs have turned to social media to find their own donor rather than sit idle on the United Network for Organ Sharing, better known as UNOS, the national waiting list.
According to UNOS, 6,521 people died in 2010 while waiting for an organ. Some could have been saved if living donors had given bone marrow, a kidney or part of their liver to them. One of the reasons for such a shortage is that some organs, such as hearts and lungs, can't be donated by living donors but must come from cadavers. Recipients who have a family member whose blood type and other criteria matches theirs can bypass the waiting list and undergo a living donor transplant. Those who don't sometimes turn to social media outlets to advertise their needs. This type of appeal to others for donation works best when a child needs an organ, or if the person is well-known in their community (physical or virtual). It's also easier to find someone to donate bone marrow than it is to find someone to donate part of their liver, a far more invasive procedure. Federal laws prohibit the sale of organs, so money is not supposed to change hands in these transactions.

Advertising that you need a kidney on Facebook may seem unusual, but 30- year-old Melissa Foster got 100 people to come forward as potential kidney donors by asking on her Facebook page. While prospective donors still need to undergo a rigorous qualification process, including medical and psychological testing, Foster still may have put herself one giant step closer to receiving a kidney by asking for one on a social network.

Another slightly more conventional way to find a donor when no one in your family qualifies works like a chain reaction. People needing liver transplants who don't have relatives with their blood type find other people waiting for transplant in the same situation. If the donors match, the two families exchange donors. These chains can grow to four or five people, until everyone has a match.

Social media is a way to reach many people with little effort. Many people will donate an organ once they learn of a specific need, particularly if the person is appealing in some way, such as a child. But therein lies the risk and the concern about the ethics of advertising for a donor. What happens to people who are less physically or emotionally appealing? Should organ donation be based on the recipient's ability to market themselves? Ethicists continue to debate these questions, but people waiting for organs don't have time to lose debating.

About the author:
Elaine Hirsch is kind of a jack-of-all-interests, from education and history to medicine and videogames. This makes it difficult to choose just one life path, so she is currently working as a writer for various education-related sites, including onlinephd.org and writing about all these things instead.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Thursday, December 22, 2011

Goshen, Kentucky woman urges organ donation to save lives

Brian James Seyer / Courtesy of Kelly Seyer who lost James in a car accident
But one source of comfort has come from the fact that his kidneys were donated to two men who are similar to Seyer — both 54 years old with two sons

By Emily Hagedorn The Courier Journal

Brian James Seyer was 43 and had two young sons.

The Goshen man had recently graduated with his master’s degree in business administration from Sullivan University and had lost 80 pounds in an effort to be healthier.

His wife, Kelly, has a difficult time making sense of his death on Nov. 3, two weeks after he was hit by a car while walking in a crosswalk near the University of Kentucky campus.

But one source of comfort has come from the fact that his kidneys were donated to two men who are similar to Seyer — both 54 years old with two sons.

In an effort to make something positive come from something tragic, Seyer is speaking out as an organ donation advocate.

“It just was really full circle for me,” she said. “It’s brought me peace that those families won’t have to go through what we did, that Brian was able to help them.”

Brian Seyer was the state sales representative for The Kohler Co. and had been in Lexington on business. Kelly Seyer believes her husband may have been on his way to lunch when he was hit by a 1997 Volvo, driven by 18-year-old Patrick O’Brien on Oct. 20.

The accident caused severe head injuries.

Kelly Seyer was at SeaWorld with her sons at the time. Brian Seyer wasn’t able to make the trip to Florida because of work but had been trading text messages with his wife, swapping comments about photos of the boys at the park.

“The last text I got was at 1:15 p.m. He was hit at 1:28 p.m.,” she said. “I didn’t hear anything (after that), and I thought he was just busy at work.”

Kohler’s human resources department called her that evening, telling her to contact UK’s hospital. She was in Lexington 24 hours later and would be there for several days while he was in a coma.

“It was two weeks of hell,” she said.

Brian Seyer deteriorated as doctors couldn’t stop the swelling in his brain. After it was clear that he would not recuperate, the family began discussing organ donation.

Kelly Seyer had recently renewed her driver’s license, opting to designate herself as an organ donor on the card. She remembers talking to her husband about that and him saying that he needed to do the same.

“He was always for the little guy,” she said. “He’s the guy, walking by a man with a can, who would put some money in it.”

Along with the designation on driver’s licenses, Kentucky adults can register as an organ donor at www.donatelifeky.org, said Jenny Miller Jones, director of education with Kentucky Organ Donor Affiliates, which worked with the Seyers through this process.

More than 1 million Kentuckians have registered, with most doing so through circuit court clerks’ offices when renewing licenses, she said. But people can go online and register themselves.

“The last thing a family wants to do is make the decision when they didn’t know what their loved one wanted,” Jones said. “This provides the answer to the family.”

Liaisons with Kentucky Organ Donor Affiliates reached out to the Seyers early and were a great source of comfort, Seyer said. They even checked up on the family many days after Brian had died.

Kelly Seyer later received a letter telling her that two men had received her husband’s kidneys. His heart valves and bone tissue also were prepared for use in transplants, and his pancreas was submitted for use in research on diabetes.

She said she hasn’t talked to her sons about the fact that their father’s organs were passed on to others.

“But I’m going to keep this letter and show it to them when I do,” she said.

Organ donation was mentioned in Brian Seyer’s service in Indianapolis, where Brian and Kelly Seyer are from. It was also mentioned at a service at the family’s church, Thomas Jefferson Unitarian Church on Brownsboro Road near Ballard High School.

Rev. Elwood Sturtevant directed parishioners to take out their driver’s licenses and sign the back as organ donors, along with the required two adult witnesses.

“Nothing will make up for the loss of Brian. ... But his life touches so many other people in a very concrete way by donation,” he said. “Organ donation is sort of the last gift we can physically make.”

It’s a gift that fills a great need, Jones said.

In 2010, roughly 28,000 successful organ transplants were performed nationwide, but it is estimated that twice as many could have been performed if more people donated organs.

Other key facts to know about organ donation is that all efforts are made to save a person’s life, regardless of their organ donation status, Jones said. Families are not charged for this, and the donor’s body is not disfigured in the process.

Acceptable donors range from newborns to senior citizens.

“People sometimes say, ‘I’m too old. Nobody will want my organs,’ ” Jones said. “Don’t rule yourself out.”

With Christmas around the corner, Seyer said she and her family are taking life day by day.

But this is one cause she plans on pursuing.

“The world is about taking care of each other,” she said. “And that’s just one thing you can do that’s selfless.”


“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Tuesday, December 20, 2011

Cystic Fibrosis robs woman of ability to do normal things

New Brunswick, Canada woman now has hope for the future as she awaits a double lung transplant

by Chris Morris The Daily Gleaner

This Christmas holds special promise for 25-year-old Heather MacInnis of Harvey, who's finally able to dream about breathing freely and living normally.

The St. Thomas University student will soon be moving to Toronto with her mother, where she will await a rare, double-lung transplant and the chance for a longer, healthier life.

She has had cystic fibrosis - a genetic, chronic and fatal disease - all her life. But in the last few years, it has steadily robbed her of breath and the ability to carry out routine activities.

MacInnis said cystic fibrosis is wearing her down, and a lung transplant is her best chance at life.

"It's a chance, not a promise, that you will have lots of years and great lungs," she said of the transplant program.

"But it's the only option. It's a chance for me to get five, 10, 20 more years. Even a few more years is always worth the effort and a brief chance, if anything, to be normal for a little while or as normal as my life will ever be. There would still be medications, but there won't be three to five hours a day of treatments or struggling to get up a flight of stairs."

MacInnis is down to just 20 per cent lung capacity.

She is sitting in a room at the Dr. Everett Chalmers Hospital in Fredericton. It's as homey as it can be for the bright-eyed, petite brunette, including a quilt on the hospital bed and a small artificial Christmas tree on the window ledge.

St. Thomas University student Heather MacInnis, 25, looks out the window in her room at the Dr. Everett Chalmers Regional Hospital on Monday afternoon. MacInnis will soon leaving for Toronto to wait for a double-lung transplant. She says the operation is a chance for as normal a life as she can hope for.

She's hooked up to oxygen 24 hours a day and has feeding tubes and other lines supporting her. Her voice is raspy and she coughs often.

Her Christmas wish is big: new lungs for herself, a cystic fibrosis cure for everyone else and freedom from stress and worry for the people she loves.

"New lungs for me, no CF for everybody else and a stress-free holiday," she said with a smile.

One in every 3,600 children born in Canada has cystic fibrosis.

More and more people with cystic fibrosis are getting lung transplants, which don't cure the disease, but provide relief from symptoms such as coughing and shortness of breath. According to the most recent statistics, 44 cystic fibrosis patients received transplants in 2009 in Canada.

MacInnis' friends and family have launched a fundraising campaign to raise money for the move to Toronto. She will likely be there at least a year, waiting six to nine months for a new set of lungs and then going through several months of rehabilitation.

The costs will be substantial. She and her mother will have to live in downtown Toronto, where rent is steep, because they have to be as close as possible to medical facilities.

"Once you're on the transplant list, you have to live within two hours of the hospital because as soon as you hear the beeper, as soon as you get the call, you have less than two hours to get to the hospital," MacInnis said.

"So we have to be close to the hospital."

Some of her costs are covered by medicare, but not all of them.

MacInnis has been a STU student for about eight years, studying religious studies and sociology. She's close to finishing her degree, but she constantly loses time because of health problems.

University officials said staff members are gearing up to raise money for her expected yearlong stay in Toronto.

Derek Simon, chairman of religious studies at STU, said MacInnis is a professor's dream student.

"She has proven herself a natural leader in the classroom or seminar learning environment: always prepared, organized, insightful, articulate," he said.

MacInnis said she's still coming to terms with the prospect of having new lungs and being able to breathe normally.

"The chance to have new lungs, it's crazy," she said.

"The idea that I'll be able to get around like everybody else, you know I don't really know what that is like. I'm excited to find out. I'm sure it will be an adjustment, but a good adjustment."

Several fundraising events are being planned for MacInnis, including a musical show and silent auction in Harvey on Jan. 28.

There are two accounts set up for donations, both are in her sister's name, Barbara MacInnis: account number 20404 02375 23 at Scotia Bank at the corner of Smythe and Dundonald streets; and account number 00934-5030580 at RBC in Harvey.


“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Monday, December 19, 2011

Book of Life displayed in Australian Library

Book encourages people to donate organs and tissues

northernstar.com

AMONG the treasures on the shelves of Lismore Library is a new kind of book.

The Book of Life, which was launched at the Library last week, has been put started by organ donation organization DonateLife and is designed to receive stories as much as it is to tell them.

Dr Mike Lindley Jones, transplant recipient Louise Owen, Mayor Jenny Dowell, Librarian Lucy Kinsley, Mary Campbell.

The book aims to encourage people to choose, when they die, to "donate" their life to someone else and also to explain the impact those who donate organs have had.

"Having the Book of Life displayed in the Lismore Library will help raise community awareness for people to discuss their donation wishes with family and friends close to them," DonateLife said in a statement.

"The personal stories included in the book have paid tribute to the generosity of organ and tissue donors and their families and have helped acknowledge the second chance of life by recipients living in our region."

DonateLife says NSW is tracking well to meet its record 2010 increase in organ donations and organ transplant surgery.

As of August, Australia's organ donation rate was 15% higher than the same period in 2010 (231 organ donors compared to 201 organ donors at August 2010) and the nation's organ transplant rate is 14% higher than the same period in 2010 (711 organs transplanted compared to 624 organs transplanted at August 2010).

DonateLife NSW state medical director Dr Robert Herkes thanked NSW organ donors and their families for their generosity.

"I know that organ and tissue donation occurs at a very difficult time for families," he said.

"The increase in organ and tissue donors and transplantation means that many more people were able to receive life saving transplants and a second chance at life."

Speaking at the Book of Life launch, Lismore Mayor Jenny Dowell encouraged Northern Rivers residents to "contribute their stories, pictures and experiences of organ and tissue donation".

"The contributions that this book will collect over the coming year will showcase the best of the human spirit and how that spirit of generosity saves lives," she said.

"Most importantly, the DonateLife Book of Life will encourage people to discuss organ and tissue donation with their families," Mayor Dowell said.

The Book of Life will collect contributions - stories, poems, pictures and experiences - about organ and tissue donation, transplantation and about waiting for a transplant.

The book will is travelling around NSW this year.

It will become part of a national collection and will be donated to the State Library of NSW and National Library in DonateLife Week 2012.

Northern NSW Local Health District organ and tissue clinical nurse specialist Mary Campbell said her team was able to work with families from any culture to work through organ and tissue donation.

"We provide support for families before, during and long after donation occurs. Families tell us that donation is a very positive outcome for them at this time of their great personal loss," Ms Campbell said.

The book and information brochures will be on display until Friday, January 27, at Lismore Library.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Friday, December 16, 2011

Xenotransplantation: using pigs as organ and tissue donors for humans

Pigs may be the answer to Australia’s organ donor shortage. Thornypup

By Peter Cowan The conversation
Transplantation is the best available treatment for many serious health problems including diabetes, kidney failure and heart disease. These conditions affect millions of people worldwide and the cost of treatment, loss of productivity and reduced quality of life are enormously expensive to society.

Although transplantation offers a lifeline to these patients, there is far greater demand for organs and tissues than can ever be met using human donors. Even with the government-driven push to increase the donation rate in Australia, many patients will become too sick to receive a transplant or will die while on the waiting list.

Some scientists believe that stem cells will ultimately provide a solution to this pressing medical problem, but growing a highly complex organ from stem cells remains in the realms of science fiction, at least for now.

A treatment that is much closer to reality, and indeed has already entered early clinical trials, is the transplantation of animal organs, tissues or cells into humans. This is called xenotransplantation.

Which species?

Humans are primates, so the obvious choice of donor animal for xenotransplantation would appear to be another member of the primate family (chimpanzees and baboons, for instance) because of their physiological similarity. But non-human primates have been ruled out as donors for several compelling practical and ethical reasons.

One of the risks to transplant recipients is infection by viruses transmitted by the transplanted organ. As our closest cousins in the animal kingdom, primates are more likely than other animals to carry viruses capable of infecting humans; HIV, the virus responsible for AIDS, originated in chimpanzees.

This “relatedness” also poses ethical problems, with the public understandably reluctant to exploit animals that share many features with humans. And even if you discount the ethical question, it’s hard to imagine being able to breed enough primates to meet the increasing demand for donor organs.

Pigs, on the other hand, tick many of the boxes. They can be raised in a clean environment, so the risk of infection from pig donors may actually be lower than that from human donors. They are already widely bred for the food industry, solving the supply issue and, provided they are treated humanely, present less of an ethical dilemma.

Material from pigs has been routinely and safely used for medical purposes for decades, with heart valves the best known example. The evidence from animal models suggests that most pig organs will work properly in human recipients.

On the downside, the evolutionary distance between pigs and humans means that the human immune system mounts a very strong response to pig organs. The drugs that are used to prevent rejection of human transplants are simply not powerful enough when it comes to pig transplants.

One solution for this problem is to genetically modify pigs so that their organs will not be recognised as foreign when transplanted into humans. Several groups around the world, including in Australia, have produced GM pigs for xenotransplantation research. These pigs are still in the testing phase, but the progress that has been made over the last 10 years suggests that the move to the clinic is not too far away.

Treating diabetes with pig islets

Pigs may also be the key to future treatment of diabetes. Insulin, the hormone that controls the level of sugar in the blood, is made by clusters of cells in the pancreas called islets. People with type 1 diabetes have abnormally high blood sugar because their islets are destroyed by the immune system. While regular insulin injections restore some control, the long term prospects are poor, with complications including renal failure and blindness.

Transplantation with human islets is an option open to only a handful of patients. Pig islets are an attractive alternative, because pig insulin is 98% identical to human insulin and was used to treat patients before recombinant human insulin became available.

In a clinical trial currently taking place in New Zealand, pig islets contained within microcapsules have been injected into the abdomen of 11 patients with diabetes. The microcapsules allow nutrients to get in and insulin to get out, but importantly they also protect the pig islets from the recipient’s immune system so that no anti-rejection drugs are needed. Early results suggest that the microcapsule treatment will not be a complete cure, but may benefit patients with severe diabetes.

In the meantime, many other strategies are being explored. Results from animal models showing islets from GM pigs can reverse diabetes for many months are particularly encouraging.

Future xenotransplantation

A recent review in the prestigious medical journal The Lancet is carefully optimistic that clinical xenotransplantation may soon become a reality, particularly for cellular grafts such as islets. Will this be, as suggested by the authors of the review, the “next medical revolution”? We’ll have to wait and see

About the author, Peter Cowan
Co-director of the Immunology Research Centre at St Vincent's Hospital Melbourne.
Chief Scientist, Immunology Research Centre, St Vincent's Hospital Melbourne 1998 – present.


DISCLOSURE STATEMENT
Peter Cowan receives funding from the National Health and Medical Research Council of Australia (NHMRC) and the Juvenile Diabetes Research Foundation (JDRF).

Our goal is to ensure the content is not compromised in any way. We therefore ask all authors to disclose any potential conflicts of interest before publication.


“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Thursday, December 15, 2011

First ‘ex-vivo’ Lung Transplants Performed in New York

In Canada, Dr. Shaf Keshavjee and his team implemented investigational trials of the Toronto ex-VIVO Lung Perfusion System which has been highly successful in saving the lives of many patients who would normally not have received their donor lungs because they were unsuitable for transplant. Only about 15% of donor lungs world-wide are acceptable for transplantation since lungs are susceptible to injuries during the brain-death process or from intensive care related lung complications. Moreover, organ retrieval often occurs before the lungs can recover from their injuries. View a video presentation of the EX-vivo system by Dr. Keshavjee at TEDMED 2010

medindia.net

Recipients of first transplanted lungs assessed and reconditioned in the operating room, a technique with the potential to dramatically boost the availability of lungs for transplant were two elderly New Yorkers. The experimental procedure was performed by Dr. Frank D'Ovidio at NewYork-Presbyterian Hospital/Columbia University Medical Center.


The "ex vivo" or outside-the-body approach involved removing lungs from a deceased donor, then enclosing them inside a transparent dome and connecting them to a cardiopulmonary pump and a ventilator. For four hours, the lungs were infused with nutrients and antibiotics. They were gradually warmed to body temperature, ventilated and oxygenated -- a process that resembles breathing, with the lungs inflating and deflating. Once determined to be viable, the lungs were immediately transplanted into the patients.

"Assessing lungs this way gives us a much more precise picture of how they should perform after transplant, and the reconditioning process may actually improve the chances of success," says Dr. D'Ovidio, associate surgical director of the lung transplant program at NewYork-Presbyterian Hospital/Columbia University Medical Center and assistant professor of surgery at Columbia University College of Physicians and Surgeons.

Traditionally, transplant surgeons have relied on a less sophisticated assessment. "Now with the ex vivo method, not only can we see the lungs inflate and deflate, but we also get hard data on how they function by monitoring multiple parameters and ultimately making sure that the gas exchange is happening at the level it needs to," continues Dr. D'Ovidio.

Going forward, the ex vivo procedure could significantly increase the availability of donor lungs, says Dr. D'Ovidio. "This has the potential to do for lung transplant what perfusion has done for kidney transplant. With the tool to better assess, recondition and possibly repair the organs, we can increase the number available to patients who desperately need them."

Currently, fewer than 30 percent of donor lungs are acceptable for transplantation, but physicians say ex vivo has the potential to double this figure as the reconditioning process is refined and improved.

The recent transplants at NewYork-Presbyterian/Columbia are part of an ongoing FDA investigational multicenter clinical research trial designed to compare outcomes from lung transplants using the ex vivo technique with those using the traditional method. This investigational trial, currently taking place in the United States, is coordinated and funded by Vitrolife, makers of the ex vivo perfusion system.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Wednesday, December 14, 2011

Ontario teen heart recipient campaigns for donors

‘Gift of life’ drives teen to help save some

By Jeff Green The Hamilton Spectator

Devan Cruickshanks is asking for a donation you’ll never need your wallet for.

Seven years ago, the Dundas teen received a heart transplant, and she’s been campaigning for people to sign their donor cards ever since.


“I’ve been doing this for years because I was given the gift of life,” 15-year-old Devan said in an interview Saturday. “People die every day waiting for organs, so I will do everything I can to save those lives.”

During Monday afternoon’s charity hockey game at the Market Street arena between Highland Secondary students and teachers, she showed up armed with information and a computer for sign-ups to BeADonor.ca.

Students at Highland each paid a toonie to get out of class Monday afternoon to watch the hockey game. The money is going to support the Christmas Tree of Hope — Hamilton’s major toy drive for kids in need — and fight juvenile arthritis.

“I’ve been doing this for years because I was given the gift of life,” Devan said in an interview Saturday. “People die every day waiting for organs, so I will do everything I can to save those lives.”

Her father, Tim, says they don’t coach the high school student or write her speaking notes. She’s done it all on her own for seven years.

Life changed in the fall of 2003, when Devan was diagnosed with dilated cardiomyopathy.

“Basically (my heart) became too big for my body,” she explained. “It was killing me.”

She was lucky enough to find a donor the following spring, a relatively short waiting time.

To this day, she takes a handful of pills morning and night.

“Anti-rejection drugs,” explains her father. They keep her alive.

Devan is asking everyone for two things: to sign up for organ and tissue donation and to have that conversation with loved ones.

“I’m only 15, but I’ve been given a second chance at life,” she said. “So I will do whatever I can to give other people that option.”

A signed donor card in your wallet doesn’t necessarily mean you are signed up, however. BeADonor.ca is urging existing donors to check their status online, along with encouraging others to sign up.


“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Tuesday, December 13, 2011

Dying Patients Should Be Quizzed On Organs says UK group

By Thomas Moore, health and science correspondent Sky News

Dying patients should routinely be asked to donate their organs, according to an NHS watchdog.

The National Institute of Health and Clinical Excellence (NICE) says doctors shouldn't shy away from raising the sensitive subject with patients and their relatives, even in the bleakest of circumstances.

Around 10,000 people are currently on the waiting list for a transplant, but the shortage of organs results in 1,000 of them dying each year.

NICE says doctors need to be more positive about the opportunities of giving life after death and not apologise for raising the possibility of organ donation.

Karen Morgan, a transplant nurse who helped draw up the new guidelines, said: "I understand what a very difficult and emotional time the end of a person's life can be, and often the last thing loved ones want to think about at this time is organ donation.

"But sadly, there is a big shortage of donors, so it is imperative that more people seriously consider donating their organs."

Although 90% of people support organ donation, only 28% have joined the donor register.

"Although it is an important decision to make, many people are comforted knowing that some good will come out of their death," said Ms Morgan.

The NICE guidelines stress that doctors should assure patients that their care won't be affected by their decision.

Five-year-old William Simpson has been waiting three years for a new heart. His Mum Tracey said doctors must be upfront with potential donors.

She told Sky News: "Our best day will be somebody's worst day. That always plays on my mind. But what use are organs in the ground?

"That sounds so heartless coming from a mum, but it is from a mum whose child needs something."

The campaign group Patient Concern said every opportunity should be taken to increase organ donations.

Director Roger Goss said: "It is potentially compounding the distress that the relative may feel, but at the same time for some families the opportunity for some good to come out of their loss is a great relief.

"So if the subject has not come up previously, then death bed is the right place for that discussion."


“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Monday, December 12, 2011

23-year-old Ontario woman receives double-lung transplant at Toronto General Hospital

'I was so scared but I was so happy and excited'

By MEGAN BURKE The Recorder & Times

Submitted photo - Lyndsay Biccum, 23, right, gets a hug from her mother Marnie Wood in a family photo taken prior to Biccum undergoing a double lung transplant at Toronto General Hospital. The community rallied together for Biccum by raising $10,000 for her at a spaghetti dinner that drew more than 600 people.

Lyndsay Biccum of Johnstown, Ontario rarely told anyone that she has cystic fibrosis, even though she has lived with it her entire life.

This changed recently when the 23-year-old South Grenville District High School graduate received a double lung transplant at a Toronto hospital.

Once word spread, people in the Prescott-Johnstown area banded together to hold a spaghetti dinner to help Biccum offset her costs as she works towards getting better. Between 600 and 700 people showed up for the dinner to show support and pulled together $10,000, all for Biccum.

The Recorder and Times spoke with Biccum, who is temporarily living in Toronto to remain close to the hospital, about what she went through leading up to surgery, her response to community support and what it was like to take her first deep breath of air.

Q. How are you feeling?

A. Excellent. I feel 110 per cent better than I did.

Q. Can you briefly explain what cystic fibrosis is?

A. It's a multi-system disease that can mostly affect your digestive system and lungs. You create more, thick mucus in your lungs that builds up, so it's harder for you to breathe.

Q. How was it growing up with cystic fibrosis?

A. It was OK. When I was younger I was only hospitalized once. Until I was probably 19 though, I was OK, because I played a lot of sports and was very active. I got sick when I was 19 with a virus and they don't know what it was, but after that my health just went downhill, which led to my transplant. But up until I was 19, I was pretty healthy.

Q. How could you tell your lungs were no longer working properly?

A. It was hard for me to do normal things. Walking upstairs became a challenge. I couldn't do groceries by myself anymore because I would get too tired. At the end it was hard to take a shower by myself. Just normal, everyday things I couldn't do by myself. It was awful. I felt like I had to be dependent on somebody all the time.

Q. What was it like to find out you needed a double lung transplant?

A. It was scary at first because I really didn't think I was that bad or in need, but I found out I did need it and doctors actually listed me in need of a donor. They decided it was probably time.

I was scared at first but then as time went on, doctors explained that because I was so young everything should be fine. Because my health was good, considering how active I was before, they said that everything was going to be fine and I'd bounce back no problem.

By the time I actually got my transplant, I was excited for it. I could go back to normal again.

Q. How was the wait for donor lungs?

A. I was in the hospital in Kingston for four weeks on oxygen and I only waited for three weeks for a lung donor because they listed me a week after I got there. It wasn't that bad -- I was lucky.

Q. What were your feelings when you were told they had lungs for you?

A. It was indescribable. Crazy. Every emotion you could ever feel was going through me. I was so scared but I was so happy and excited I just wanted to get it done.

Q. How did you mentally prepare yourself for the surgery?

A. It was a lot. I had to do things I never really thought I'd do before. I had to write my final wishes down and things like that, and that's hard because I'm 23 and I shouldn't be having to do that.

My mom and dad were really supportive and were like, everything will be fine. They were my rock. If I had a breakdown they'd tell me it's going to be good, it'll be fine, you're going to feel much better. I was pretty stable mentally.

The Toronto General Hospital and the nursing staff is 100 per cent top of the line. The nurses are amazing. If you have any questions they answer them, they explain everything to you. The doctors and surgeons are just out of this world and I want to thank them for being so good to me and helping me through everything.

Q. What was it like to take your first breath following the surgery?

A. It was crazy. I had a breathing tube in for the first day. I kept wanting to breath by myself so they had to tell me to let the machine breathe for me.

And then after they took the breathing tube out, I was laying in bed and I was like, did I forget to breathe or am I still breathing because I was so used to breathing so quickly and fast that after I was breathing like a normal person, it was weird at first. But I got used to it pretty fast and it felt really good.

Taking deep breaths was almost unexplainable. It felt kind of weird because really I've never been able to breath normally, ever. Even when I was feeling good, it still wasn't normal.

Q. Can you notice a difference?

A. A major difference and I don't cough at all anymore. Whenever I do clear my throat everyone asks, are you OK? But there's no coughing anymore at all. It's weird, kind of.

I haven't been able to get up and cook a meal in two years and now I can cook supper when mom's here or I can go to the grocery store and get groceries or walk down the block without getting out of breath. It's crazy.

The worst part is not my breathing, it's trying to get my legs back into shape because I was in the hospital for seven weeks before and I wasn't really moving that much, so my muscles have deteriorated. But they're coming. I can walk back and forth to the hospital now. It's coming back to normal.

Q. Did you have any post-operatic issues?

A. We had a couple bumps in the road because I had a little rejection at first and that was pretty scary because I thought my lungs weren't going to work, but they sat down and explained that it happens to everybody, you'll be fine, we'll treat you -and they did. They treated me with medication and three days later I was back feeling normal again.

Q. What kind of rehabilitation are you looking at?

A. I'm going to physiotherapy three days a week just for muscle building and strength. I go on the treadmill, do weights, stretches and go on the bicycle for about two hours a day. They said it'd take about three months. I should be home for good middle of February.

But I was at the doctor's the other day and they said I'm about three weeks ahead of where I should be. I'm a very stubborn person to begin with, so my dad said it doesn't surprise him at all. I feel amazing. Every day I feel a little better and every day I can do something else.

Q. When back to full strength, what is the first thing you want to do?

A. I just want to go back to my normal life. Doing normal things, getting up, a normal routine.

I'm going to go back to school in September to take business accounting. I went to school after high school for medical lab technician and I worked in Ottawa for three years but then I got sick and had to quit working last February.

Doctors told me because of my immune system being low from all my medications, I shouldn't go back to working at a lab because it'd be easier for me to catch viruses and stuff that makes me sick. I always liked accounting in high school so I thought I'd go back to school for business.

Q. What did you think of the spaghetti dinner held for you in Johnstown?

A. At first I was was like OK, that would be fun. Then in the weeks leading up to it, people told me they sold this many tickets or we sold this many more and I couldn't believe it. I knew people knew me in Prescott and Johnstown but it was indescribable how many people actually went to donate and support me.

When I was younger, I didn't really tell that many people I had CF. A lot of people came up to my mom and dad that I went to high school with or were my teachers and they said, 'I didn't even know Lyndsay had cystic fibrosis.' They were like, 'this was such a shock for us.' But it's overwhelming the amount of people that came out to support just me.

A couple of times my mom came up to the hospital to see me and told me some of the things that people were doing. It made me cry because I couldn't believe people were doing something like this just for me. The support from the community has been overwhelming.

Q. When you come home will you be giving a big thank you?

A. Oh yes. I'm coming home for a week at Christmas and I'm going to try and see as many people as I can. We're going to have a thank you dinner that we're going to put on after I come home for good for everybody in the community to drop in and say hi, because there's no possible way to go everywhere to see everybody. We're going to see them and say thank you.


“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Friday, December 09, 2011

Organ Transplant Transforms Life of 10-Year-Old Child Who Could Not Eat

Matisse Reid was born with a rare bowel condition called chronic idiopathic intestinal pseudo obstruction.

By Kelly Burgess and Cindy Cusic Micco Pine-RichlandPatch

Matisse Reid has big plans.

She wants to update her cooking blog, and she's taken up the violin.


Normal activities for any 10-year-old girl, perhaps, but they're miraculous for this Eden Hall Upper Elementary fifth-grader from Gibsonia.

A native of New Zealand, Matisse Reid was born Dec. 25, 2000 with a rare bowel condition called chronic idiopathic intestinal pseudo obstruction. Unable to eat because of the effects of the disease, she relied on IV feedings to keep her alive.

She underwent an organ transplant of a small and large intestine a year ago today at Children's Hospital of Pittsburgh of UPMC. The procedure enabled her to eat for the first time.

Now she is an inspiration to families whose children await transplants as she transitions to a nearly normal life.

Matisse has missed more than half of her school life because of illness, but her family says she is doing surprisingly well considering that.

"Prior to her transplant, Matisse found it really difficult to have extracurricular activities because she was too sick to maintain the practice and put in the time required," says her mother, Jodee Reid.

These days, Matisse is looking forward to singing in the school chorus and playing for the Miracle League baseball team. She's also writing her cooking blog, and her interest in food landed her an article in Parade magazine that will be published Sunday, Dec. 11.

Jodee Reid says Parade writer Kate Meyers interviewed Matisse about her life, her transplant, her interest in cooking and her move from New Zealand to the United States.

"Matisse cooked for Kate, which was really interesting as Kate’s husband is the editor of Cooking Light Magazine, so Kate truly has a broad culinary exposure," Jodee Reid says.

"She enjoyed the seafood alfredo Matisse cooked and was pretty impressed. Kate has interviewed some pretty big stars, so it was an honor to have her interview Matisse and show so much interest in her life."

This week, Jodee announced that Matisse has been asked to be a contributor for Cooking Light Magazine as the Kid Foodie.

Matisse has come a long way from the multi-organ transplant she underwent a year ago, through countless lab tests to monitor potential organ rejection, bouts of severe pain, anti-rejection medicines, and round-the-clock monitoring.

The child's story touched her Western Pennsylvania community, which rallied around the little girl with the bubbly attitude.

After the transplant, her school hosted a replenishment blood drive that drew 75 people, including Matisse's father, Wayne, and her sister Rachel, to sign in and donate blood.

Neighbors brought the family meals as Matisse's parents took turns staying with Matisse during the six weeks she spent in Children's Hospital.

Matisse also was a cause celebre before leaving New Zealand. Her community there rallied around the family to raise money for their U.S. living expenses while they waited for the transplant.

Jodee Reid still keeps a journal of her daughter's journey in which she's detailed many ups and downs — not only with Matisse's health, but also of many children battling serious illnesses whom the Reids have gotten to know and love over the years. It can be heartbreaking to read, but it also celebrates even small victories.

The family has struggled with finances and with sleep-deprivation from round-the-clock care, but Jodee Reid writes in moving language about how it's all worth it to see Matisse transformed from a sickly child to one with "the energy of a 2-year-old."

As Jodee Reid wrote in the Sept.18 entry in her CaringBridge.org journal:

As new as this is to me, you can imagine how it is for Matisse. It is like discovering the world for the first time. It also highlights how much she has missed out on, and that there is some definite social conditioning that she has skipped altogether.

I feel this year is going to be very difficult for Matisse academically — we've never held her back even though she has missed at least half her school life. I also feel it is going to be a huge adjustment socially. We are thankful that Matisse is in a wonderful school [with teachers and administrators] who 'get it'.

Matisse herself is really trying to find where she fits now. When she was little there was never really a label or place for the chronically ill. When I finally accepted the 'special needs' label, we found places where Matisse fit.

Now she is torn between her special-needs self and this new well, healthy self. An incredible issue which I had never thought about, and one we would much rather have than chronically ill, but still another problem to solve.

An example is Miracle League — baseball for special needs. Matisse loves it and was welcomed back with open arms, however, after the first game she said to me "Mum, I'm not really special-needs anymore am I"?

On the day before the anniversary of Matisse's transplant a year ago, Jodee Reid thanked the family of the donor, as she has done many times during the past year, in her journal entry:

This time last year we woke like it was a normal day, oblivious to the fact that a mother and father were saying goodbye to their child and allowing us to say goodbye to 10 years of chronic idiopathic intestinal pseudo obstruction.

This was the last day of Matisse's life that she had to endure being sick.

At 6 p.m. we got our ninth transplant call [and] those words — "We have organs for Matisse" — to us meant hope, but to another family meant saying goodbye to their precious child.

Please keep all donor families, but especially ours, in your thoughts today. Tomorrow we celebrate one year post transplant, but today we mourn the loss of a child we never knew who gave us the greatest gift.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

Wednesday, December 07, 2011

CDC's proposed U.S. guidelines for transplants say two sex partners is too many for top-notch organ donors

Rheana Murray New York Daily News


Clive Gee/AP
Those who sign an organ donor card and have had sex with two or more people in the past year would be considered high risk for transmitting hepatitis B and C in addition to HIV, according to proposed guidelines from the Centers for Disease Control and Prevention.


If you’re not monogamous, you’re not an ideal organ donor, according to a new set of health guidelines proposed by the Centers for Disease Control and Prevention.

Under the proposed policy, people who’ve had sex with two or more people in the past year will be considered high-risk for transmitting HIV, hepatitis B and hepatitis C, but transplant experts are arguing that the standards are far too limiting.

“With the new guidelines, every college student in America will be high-risk,” said Dr. Harry Dorn-Arias, a transplant surgeon at the University of Virginia, according to msnbc.com. “Right now, it’s probably a prostitute or a guy with a needle in his arm. Next time, it will be just a young guy.”

The guidelines could limit the number of available organs by discouraging potential donors who are hesitant to have their sexual history classified as “risky,” especially if the transplant situation involves a family member, Dorn-Arias warns.

“If you were going to give your organ to your mom or dad or sister, you’re going to be ashamed of that,” he said. “You’re either going to say no, or you’re going to lie.”

The policy could also deter patients in need of a transplant from accepting organs that are labeled “high-risk,” says Tracy Giacoma, transplant administrator at the University of Kansas Hospital, according to msnbc.com.

“If you have a donor that’s 19 years old and he had multiple partners, we’ll have to tell the recipient, ‘This is a high-risk organ,’” she said.

“It’s probably going to triple what we consider high risk at this point. It may scare patients off from taking these organs. More patients may die because they don’t take these organs.”

The CDC says the proposition is designed to give transplant-seekers as much information as possible about an organ they might take.

“It’s geared for the patient, so the patient knows as much as they can about the organ being transplanted in them,” said Dr. Matthew J. Keuhnert, director of the center’s office of Blood, Organ and Other Tissue Safety, to the network.

SAFE SEX IS GOOD FOR YOUR HEALTH

“Our priority here is safety,” he added. “Patients should know if they’re getting an organ at elevated risk.”

Between 2007 and 2010, the CDC confirmed a dozen cases of unexpected transmission of infections in transplant cases.

The proposed guidelines would be the first major update since 1994 to the CDC’s Public Health Service policies for preventing transmission of HIV through human tissue and organs. It adds hepatitis B and hepatitis C to the list of viruses that donors must be tested for, while the current policy mandates only an HIV test.

The guidelines can be viewed at  Centers for Disease Control and Prevention.




New Zealand, register at Organ Donation New Zealand
South Africa, http://www.odf.org.za/
United States, organdonor.gov
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.