Sunday, November 30, 2008

THANKS

AS Americans celebrate Thanksgiving this weekend we are reminded that we have much to be thankful for, especially those of us who have been given a second chance at life by an organ transplant. We thank our donors, our donor families, our families and friends for their love, care and support and our health care providers who brought us through those difficult times in our lives.


Patient kept alive with new defibrillator vest while waiting for a heart transplant

Life preserver for the heart, but sometimes hard to find

news8austin.com

Debbie Rinde-Hoffman, M.D., medical director of the cardiac transplant program at Tampa General Hospital in Florida, talks about a new heart vest (a wearable defibrillator) that is saving the lives of patients with heart failure.

How much trouble was your heart patient in when he came to you?

Dr. Rinde-Hoffman: He was in a lot of trouble when he first came to us. He had actually been evaluated for heart transplant up north and was told that he wasn't a candidate and could barely walk from his room to his bathroom at his house before getting significantly short of breath. He had been hospitalized at least two or three times in the last few months because of worsening congestive heart failure.

What was his diagnosis?

Dr. Rinde-Hoffman: What he had was what we call an ischemic cardiomyopathy, which means that his heart muscle was weak because of blockages in his heart arteries and damage to his heart from previous heart attacks. He also had congestive heart failure, which is when the heart is unable to keep up with the demands that you need to place on it, so patients often get short of breath or fatigued or swelling in their legs, and they can develop rhythm problems because of the congestive heart failure as well.

Why did he need the vest?

Dr. Rinde-Hoffman: Actually, when he came to us, we discovered that he was growing some bacteria in his blood, and we were unable to clear the bacteria from his bloodstream. We found out that his previously placed defibrillator had become infected, so then the defibrillator had to be removed. During the time when the defibrillator was removed and he was on intravenous antibiotics, he couldn't have another one placed until that infection was gone.

What was the problem with having the defibrillator removed?

Dr. Rinde-Hoffman: Without the defibrillator, the risk is that he could die from something called sudden cardiac death, which is a common way that patients with end-stage heart disease die.

What happened when you put the vest on him?

Dr. Rinde-Hoffman: We had put the vest on Mr. Benton in preparation for discharge home the following day, and we put the vest on the patients knowing that there's always a risk that the vest is going to shock him. That's what they have it for, and that evening the vest did what it was programmed to do. He went into a potentially lethal rhythm disturbance, and the vest shocked him and saved his life.

What did that do for his future?

Dr. Rinde-Hoffman: It allowed us to continue treating him with the intravenous antibiotics, waiting for the infection to completely clear, and then the next step was for him to get on the list for a heart transplant. In the interim, unfortunately, his heart deteriorated, and he needed a ventricular assist device. He then eventually got a heart transplant, so he's been through the ringer.

His successful treatment means that he's going to be able to watch his grandchildren grow up. He's going to be able to take trips and spend time with his family that he wasn't going to be able to otherwise.

What kind of impact does the heart vest make on patients' lives?

Dr. Rinde-Hoffman: We give patients a second chance at life. The patients that have end-stage heart disease who, we think, within a year or two would no longer be around without these options, this is something that really gives them a new lease on life.

Without this treatment, what would have happened to your patient?

Dr. Rinde-Hoffman: He would have probably died.

“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

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

Saturday, November 29, 2008

Cystic Fibrosis claims lives of sisters

Pictured: 22-year-old Jodi Dunmore and sister Lucinda, 19.


By Daily Mail Reporter

The 'fun-loving and beautiful' sisters killed by the same disease within 20 months of each other

Many sisters are very close but Jodi and Lucinda Dunmore had more reason than most to feel a strong bond.

Both were born with cystis cibrosis and helped each other get the most out of life despite the lung disease.

But, sadly, it ultimately also united them in death when the sisters passed away less than two years apart.

Their family is preparing for 22-year-old Jodie's funeral on Monday after she died on November 19, having suffered breathlessness.

Lucinda died aged 19 in March 2007 after contracting a flu virus.

They were 'fun-loving beautiful girls' who were incredibly close because of the illness, said their mother Eileen, from Souldrop, Bedfordshire.

'They shared a lot between them,' she said. 'If one was worried, they would talk to each other.

'This illness has been haunting the family for years. We thought treatment would become better, that their health would improve somehow. I guess a cure was too much to ask for.

'Jodi never got over losing Lundinda. She was absolutely terrified every time she got ill. Lucinda died suddenly and Jodi realized that could happen to her too.'

No one else in the family - fahter Clinton, a 54-year-old farmer, and brothers darren, 39, Lee, 31, and James, 18 - has the disease.

It is caused by a defective gene carried by both partners wich clogs the lungs with mucus, causing infection and inflammation..

Jodi was in her final year studying physical geograph at King's College, London.

She was planning a gap year in Australia and Asia, and wanted to become a chartered surveyor.

Lucinda died in the middle of her gap year and had been due to fly to Australia before studying business management at Nottingham University.

Mrs. Dunmore said her strikingly similar daughters had very different personalities.

'Jodi was very fun-loving and vivacious - a real party-goer. Lucinda was more laid back, nothing fazed her.

'We used to call her our little hippy because shw would always be wearing beads instead of shoes.

'Cystic fibrosis lived with them rather than them living with cystic fibrosis.

'They both went skiing, waterskiing, clay pigeon shooting, did everything they wanted because we always knew their lives would be short. We did not know it would be this short.

'It is a devastating disease because the girls looked stunning on the outside but were actually very ill.'

Fraser, the two-year-old son of (British Prime Minister) Gordon Brown, also suffers from cystic fibrosis.

His wife Sarah has campaigned tirelessly to raise the profile of the illness, the UK's most common hereditary disease with over 8,000 sufferers. Their average life expectancy is 31 years.

The Dunmore family has raised more than £100,000 for cystic fibrosis charities over the last 20 years.

Mrs. Dunmore now plans to devote all her energy towards adding to this total.

“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

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

Friday, November 28, 2008

Love conquers all while waiting for liver transplant

Newly-weds Andy and Claire Loates

Exclusive by Sam Kirby Salford Advertiser UK

A LOVING couple brought their wedding day forward by four months because they feared the groom, who is waiting for a life-saving liver transplant, would not live to see their big day.

Newly-weds Andy and Claire Loates, from Worsley were due to marry in March, but tied the knot last Saturday.

Now Andy, who suffers from an autoimmune disease which is attacking his liver, faces an agonising wait for a transplant.

Bride Claire, 24, said: "About eight weeks ago we found out the severity of Andy’s condition.

"If he doesn’t get a transplant within the next 10 months he will die so we brought the wedding forward in case we never get there.

"It was important to us and really means a lot."

The couple were married at the Novotel, in Worsley Brow, with Andy heading back to St James’ Hospital, in Leeds, after the ceremony.

And despite being tinged with sadness, the pair say they had a fantastic day.

Claire said: "The fact that we made it was amazing.

"The day before the wedding the hospital were saying he might not be allowed.
"It was a very emotional day but to see him standing and enjoying himself was a really big deal."

Andy, 34, said: "It was a real tall order just getting there, the hospital staff pulled out all the stops - we couldn’t have done it without them.

"I am really paying the price now but it was well worth it."
Claire and Andy are now trying to raise awareness about organ donations.
Andy said: "It’s so important that people are educated and understand it.

"People always assume liver disease is alcohol related but the ‘George Best’ scenarios are just a drop in the ocean compared to the number of people who need transplants for medical-related conditions.

"After being here and seeing it first-hand you understand.

"People need to think about organ donations and saving people’s lives.

"If my case helps just one person then it’s worth it."

Organ donations have hit the headlines in recent weeks with experts rejecting the idea of 'presumed consent'.

There are currently 8,000 people in the UK who need a transplant but only 3,000 operations are carried out each year, while around 1,000 people die while on a waiting list.

And Claire thinks an 'opt-out' system would help save lives.

"It's a fantastic idea and it would make such a difference," she said.

"Britain is the only country where by law the next of kin have the final say so even if you carry a donor card, your next of kin can refuse organ donation.

"A compulsory opt out scheme would be much fairer.

"People need to be taught about organ donation and what a difference it can make."

For more information about organ transplants (in the UK) or to become a donor go to: www.uktransplant.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

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

Thursday, November 27, 2008

Vatican in “Firestorm” over Brain Death Criteria for Organ Transplants


By Hilary White LifeSiteNews

ROME - Dispute within the Vatican on the approval of so-called “brain death” criteria for organ transplants remains sharp, according to a senior Vatican correspondent. Sandro Magister, a leading Italian journalist and expert on the Vatican, wrote this week of the internal dispute over support and opposition to “brain death” criteria, the definition of death that allows vital organs to be removed from patients while their hearts are still beating.

Magister points out that in September this year, L’Osservatore Romano, the official newspaper of the Vatican, published on its front page a long article by the philosopher Lucetta Scaraffia. Scaraffia, who is the vice-president of the Italian Association for Science and Life and a member of the Italian National Committee on Bio-Ethics, called into question the Vatican’s approval of “brain death” criteria for organ transplants.

That article, said Magister, “raised a firestorm” of debate within the Vatican, coming as it did in the immediate lead-up to a generously financed international conference on organ transplants, sponsored in part by the Pontifical Academy for Life (PAV). That sponsorship had outraged pro-life advocates around the world who said that, given the problems surrounding organ transplantation, the PAV had no business promoting it. Judie Brown, a member of the PAV and the head of American Life League, had written to Academy head Archbishop Fisichella asking that the conference be postponed or cancelled altogether.

Nevertheless, Magister said, the “predominant approach” towards organ transplantation by the Vatican has been “agreement with the practice of transplanting organs after the confirmation of brain death.” It was perhaps with this “agreement” in mind that Scaraffia wrote in L’Osservatore Romano that a declaration of “brain death: cannot be considered the end of life in light of new scientific research."

The unease of the pro-life movement with “brain death” was sustained by Pope Benedict XVI’s address to the transplant conference, in which he pointedly insisted that organ donation must remain “a gift” of the donor and that organs cannot be taken from vulnerable persons without their consent.

“The main criterion,” the Pope said, must be “respect for the life of the donor so that the removal of organs is allowed only in the presence of his actual death.”

The Pope is likely to have been referring to the L’Osservatore Romano article when he told the Transplant Conference, “Science, in recent years has made further progress in the determination of the death of a patient.” In the question of determination of death, the Pope cautioned, “there must not be the slightest suspicion of arbitrariness. Where certainty cannot be achieved, the principle of precaution must prevail.”

At the same time, however, Magister says that “pressure was applied” to Pope Benedict to attempt to force him to confirm “brain death” as a valid criterion. Magister pointed out, as evidence of the dispute within the Vatican, that Bishop Marcélo Sánchez Sorondo, chancellor of the Pontifical Academy of Sciences (PAS), immediately following the Pope’s address hastened to post to the Vatican website the findings of a group of scholars at a 2006 conference of the PAS who supported “brain death” criteria.

Bishop Sorando did not also post the suppressed findings of the 2005 conference on the same topic where a majority of participants opposed 'brain death' as a true definition of death. There was a more selective invitation to pro-organ transplant scholars for the 2006 conference.

Read related LifeSiteNews.com coverage:

Exclusive: Sources Reveal Internal Uproar over Vatican Conference Promoting Organ Donation
click here

Vatican Newspaper: Brain Death and thus Organ Donation Must be Reconsidered
click here

Pope Warns Organ Transplant Conference of Abuses of Death Criteria
click here

“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

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

Wednesday, November 26, 2008

Donate Life Rose Parade® Float Honors 14 Donation and Transplantation Leaders on 'Stars of Life' Walk of Fame


Be sure to mark your calendar to view the 120th Rose Parade Thursday, January 1, 2009, at 8 a.m. PST and watch for the Donate Life float

Following the Rose Parade, at 2 p.m. (PST), the 95th Rose Bowl Game® will feature an exciting match-up between Penn State and USC, once again showcasing the best of collegiate football.


On New Year’s Day, 14 men and women who have made exceptional contributions to organ, eye and tissue donation and transplantation will be honored with Walk of Fame stars on the 2009 Donate Life Rose Parade float, Stars of Life.

Inspired by the 2009 Rose Parade theme Hats Off To Entertainment and modeled after the Hollywood Walk of Fame, this cluster of stars honors luminaries in the field of donation and transplantation who have made a positive, lasting impact on organ, eye and tissue donation and transplantation through their contributions to medicine, the community, and public policy. From a pool of more than 60 nominations received through a national call for submissions, all 14 honorees were chosen by the float’s organizing committee, which includes participants from the full spectrum of donation, transplantation and affiliated healthcare organizations.

“We had a special opportunity this year to honor those who have worked diligently, year after year, to save lives through donation and transplantation,” said Tom Mone, member of the Donate Life float committee and chief executive officer and executive vice president at OneLegacy, the nonprofit organ and tissue recovery agency serving the greater Los Angeles area. “Some of our honorees are household names in their respective professions, others have pioneered organizations, campaigns and initiatives, and some have inspired people and communities worldwide to say ‘yes’ to donation. To all of these ‘Stars of Life,’ we simply say: thank you.”

The ‘Stars of Life’ Walk of Fame honorees include (in alphabetical order):

  • Clive O. Callender, MD, FACS (Silver Spring, Md.), the senior African American transplant surgeon, founder of the National Minority Organ/Tissue Transplant Education Program (MOTTEP®), and expert on the relationship between minorities and organ and tissue donation and transplantation.

  • Gary Foxen (Orange, Calif.), lung recipient and visionary whose idea for a Rose Parade float to reach a mass audience about donation resulted in the largest public relations campaign in the nation for organ, eye and tissue donation.

  • Reg Green (La Canada, Calif.), founder of The Nicholas Green Foundation, author and global ambassador for donation who, with his wife, Maggie, is internationally recognized as the “first family of donation” after the death of their young son, Nicholas, in Italy in 1994.

  • Richard J. Kagan, MD, FACS (Cincinnati, Ohio), world-renowned burn care surgeon and prominent proponent of using human allogeneic skin grafts as the gold standard for burn care.

  • Bill Lofthouse (1939-2008), donor husband and founder of Phoenix Decorating Co., one of the top producers of Rose Parade floats, whose generous support helped the Donate Life float evolve into a national tradition.

  • Robert and Rafael Mendez, MD, FACS (Los Angeles, Calif.), kidney transplant surgeons and founders of OneLegacy, the nation’s largest organ and tissue recovery agency, and the National Institute of Transplantation.

  • Kenneth Moritsugu, MD, PhD (Washington, D.C.), donor father and husband, former Acting Surgeon General of the U.S., and one of the nation’s most respected ambassadors of donation and transplantation.

  • Joseph E. Murray, MD (Wellesley Hills, Mass.), recipient of the 1990 Nobel Prize in Medicine who conducted the world’s first kidney transplant, allograft transplant, and transplant of a kidney from a deceased donor.

  • Barbara Schulman, RN, CPTC (Los Angeles, Calif.), co-founder and first president of the North American Transplant Coordinators Organization (NATCO).

  • Thomas E. Starzl, MD, PhD (Le Mars, Iowa), groundbreaking surgeon who performed the world’s first successful liver transplant in 1967 and won the 2004 National Medal of Science for his innovation in transplantation medicine.

  • Bryan Stewart (Northridge, Calif.), vice president of communications at OneLegacy, and chairman of the organizing committee for the Donate Life Rose Parade float, centerpiece of the nation's largest public relations campaign to inspire people to donate life.

  • Tommy G. Thompson (Madison, Wis.), former Governor of Wisconsin and former Secretary of the U.S. Dept. of Health and Human Services whose initiatives include the first-ever state law mandating organ donation education in the classroom, and the Organ Donation and Transplantation Breakthrough Collaborative, a drive to increase organ donation rates nationwide through the sharing of best practices among hospitals.

  • Jesse White (Chicago, Ill.), Illinois Secretary of State whose advocacy of donation and the Illinois Organ/Tissue Donor Registry, the nation's first confidential computerized database allowing individuals to document their donor designations, is a model for the nation.

  • James S. Wolf, MD (1935-2007), pioneer transplant surgeon whose vision of the value and need for public education and collaboration among organ, eye and tissue recovery organizations led to the founding of the Coalition on Donation (now Donate Life America).


More than 28,000 lives are saved each year in the U.S. through the gift of organ donation, giving hope to the more than 100,000 people awaiting a life-saving organ transplant. In addition, every year hundreds of thousands of people need donated corneas and tissue to prevent or cure blindness, heal burns or save limbs.

This special group of organ, eye, and tissue donors will be honored visually in ‘floragraph’ images adorning the sixth Donate Life float entry, Stars of Life, in the 120th Rose Parade. Amidst the float’s spectacular shower of stars, 38 gold stars will frame these artistic portraits created with floral and other natural materials. Families of many of the donors depicted in the floragraphs will journey cross-country to Pasadena in the weeks leading up to the Parade to decorate the portraits of their loved ones.

In addition to the Walk of Fame honorees, the float will feature 26 riders, among them transplant recipients, donor family members and a living donor, immersed in a shower of more than 100 stars. Among them are 38 gold stars with floragraph portraits of organ, eye and tissue donors, dozens of white stars to represent those among us who have been touched by donation, and four transparent stars to symbolize those in need of donated organs, corneas and tissue. The large orange-yellow stars at the front of the float will carry more than 1,000 roses dedicated through the float’s Family Circle program.

Coordinated by Donate Life America member OneLegacy, the Donate Life Rose Parade float is supported by 60 official partners from across the nation, including organ and tissue recovery organizations, tissue banks, state donor registries, transplant centers and affiliated organizations. Joining OneLegacy as top-level benefactors are Astellas Pharma US, Inc., a fourth-year sponsor of five float riders through the “Ride of a Lifetime” contest and supporter of 1,000 volunteer decorators; the American Association of Tissue Banks (AATB); Donate Life America; the Family Circle Rose Dedication Program; and UNOS (United Network for Organ Sharing) and National Donor Memorial. All float partners encourage parade viewers to save lives by registering in their states to be organ, eye and tissue donors and donating blood in their communities.

The 120th Rose Parade themed Hats Off To Entertainment will take place Thurs., Jan. 1, 2009, at 8 a.m. (PST) featuring majestic floral floats, high-stepping equestrian units and spirited marching bands showcasing the best in entertainment. Following the Rose Parade, at 2 p.m. (PST), the 95th Rose Bowl Game® will feature an exciting match-up between Penn State and USC, once again showcasing the best of collegiate football.

“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

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

Tuesday, November 25, 2008

Mother, 29, needs heart transplant

Mother’s heart filled with hope

By Meg Coker The Tunica Times, Mississippi

Her life is filled with uncertainty and fear, but one 29 year old mother of two clings to the hope that one day her life will change. And she hopes that day is soon.

Tomeka Scott, a lifelong Tunica resident, is suffering from an enlarged heart and congestive heart failure. For over six years, she’s been taking medicine to help keep her conditions under control. Now, her doctors say the time has come for Scott to have a heart transplant.

“They tell me I probably needed it in 2002, but now my heart is not responding to the medicines I have been taking,” Scott said. “My doctors say the next step is a transplant if I want to live a long life.”

And since being diagnosed in April of 2002, Scott’s life has been on hold.

She is four classes away from earning an associate’s degree from Northwest Community College. She was majoring in childcare but can’t complete her degree or start a career due to her condition.

“Right now, I can’t finish school because I get sick,” Scott said.

In the last six years, she has been hospitalized multiple times.

Each time she’s had to go to the hospital, her children Derrick and Dekeidra have been afraid she wasn’t coming back.

“They ask a lot of questions like, ‘Are you going to die?’ and they don’t want me to go. They get really scared,” Scott said.

Scott said her children can’t remember a time when she wasn’t sick. She was first diagnosed when her daughter was four months old and her son was two. Doctors attribute her illness to childbirth, but say it is very rare.

“They say it doesn’t happen often, but it does happen,” Scott said.

And since it happened Scott has had a defibulator put in to shock her heart should it stop beating. She takes seven different types of medicines a day to keep down her fluids, build her potassium up and keep her kidneys functioning properly.

In addition to taking medication, Scott must see a doctor three or four times a week. Her home cardiologist is located in Southaven, but the heart transplant will actually take place in Jackson, Miss at the University Medical Center. In order to prepare for that, she’s been making the trip back and forth to the state capitol to see doctors there.

“I’ve been going to meet with them, but I’ve missed an appointment because I didn’t have a ride,” Scott said.

Transportation is a big issue for Scott, and doctors are hesitant to put her on the transplant list because of it.

“I’ve got to be prepared to go at any time,” Scott said.

And she hopes there is someone out there who can take her to Jackson when the time comes.

In the meantime, she’s been through all the pre-transplant testings and screenings, which are extensive. Scott said she had to pass an eye and dental exam. She’s had blood tests and tissue typing in order to find a compatible match. She’s been through psychiatric and psychological evaluations. She’s consulted with a team of doctors. All that is just a small part of what transplant patients must go through.

Scott said she is mentally prepared for the transplant, although she hasn’t always felt that way.

“It’s scary to think about that at first,” Scott admits. “I didn’t want to do the transplant, because I wasn’t sure what would happen.”

Now, she knows it’s the only way.

Luckily, she’s been surrounded by a strong support system who have helped her face the tough decisions. She said she was grateful for pastor McKinley Daley for his guidance and help. She said her children’s father, Derrick Scott, and her sister and her mother have helped take care of her and her children. Her mother, Annette Harris, comes over several times a week to clean up her house and cook.

“She makes sure I eat right,” Scott said of her mother. “I am on a low sodium diet, no salt, limited snacks, no chips, no sweets.”

Her mother said she doesn’t mind helping and hopes that her daughter will get the surgery she needs.

“I just keep praying and trusting God, even though we have difficulties,” Harris said.

And Scott said she is looking forward to the day when those obstacles are gone.

“I want to live a happy, healthy life, a heart healthy life,” Scott said. “I know that my new heart is not mine and it’s got to respond to my body. I want to live life to the fullest.”

That includes watching her children grow up.

Scott said she loves her family and excitedly described them and their hobbies. Her son loves music and plays the guitar. He is also an avid sportsfan and really enjoys football, the sport his father played in high school.

Her daughter loves Hannah Montana and watching football. She dreams of becoming a cardiologist to help her mom and others like her.

Both children Tunica Elementary School, where they learn while their mother waits.

Tomeka Scott is waiting. Her mind is filled with uncertainty and fear, but she is holding out hope that one day her life will change.

And she hopes that day is soon.

“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

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

Monday, November 24, 2008

Canadian man asks government to help with wife's lung transplant expenses

Cape Bretoner whose wife needs lung transplant says province should help out

The Canadian Press

HALIFAX, Nova Scotia — Unless he gets some financial help, Ken MacKay says his savings will soon dry up, forcing his wife Marilyn - awaiting a double-lung transplant in Toronto - to return home to Cape Breton to die.

MacKay made a tearful plea for help at the provincial legislature Friday, saying the province should cover the living expenses for anyone forced to leave the province for medical care for more than three months.

The opposition Liberals introduced a bill Friday that would make the proposal law, though they couldn't say how much it would cost the province.

When asked how his wife is doing after spending the past 16 months in Ontario, MacKay could barely contain his raw emotions.

"Depressed. Really, really..." he said, his words trailing off, tears welling up in his red eyes. "For (the government) to just turn their backs on a life-and-death situation . . . I think it's just terrible."

Nova Scotia, like several other provinces, does not have the staff and facilities to handle lung transplants. Patients are forced to travel to Toronto, where they must stay within a two-hour drive of the hospital as they wait for a suitable donor.

The Nova Scotia government covers all medical costs, including support services such as medically necessary oxygen for home care. But the MacKays have to pay for their food, lodging and other expenses.

If MacKay's wife returns to Cape Breton, her prospects look bleak.

"She'll be taken off the transplant list and she'll just come home to spend what time she has left with her family," MacKay told a news conference.

MacKay said he's sold his car, his boat, his all-terrain vehicle and he expects to be broke by the end of January as the expenses keep piling up.

"The government should have some kind of funding in place because the costs are astronomical," he said afterwards.

"You go to bed and the last thing on your mind is finances. You get up in the morning and the (first) thing on your mind is finances. It's very stressful on Marilyn ... It's hard."

His 57-year-old wife is staying with a nephew, which has helped cut costs. Still, MacKay said the total bill so far is more than $35,000.

Friends and relatives in his hometown of Louisdale have held fundraisers and the Lung Association of Nova Scotia has also pitched in.

"It's been a hard struggle, but the communities have rallied together and supported us," said MacKay, an engineer who works at a lobster holding facility in Cape Breton.

"My hometown of Louisdale has been fantastic ... I've had support from right across Canada, actually."

But the money is quickly running out.

Health Minister Chris d'Entremont said the province wants to ensure Marilyn MacKay gets the transplant, and he pledged to present some options before the end of January.

"We been trying to help out as best we can, trying to stay within the guidelines," he said outside the legislature. "We don't want Marilyn to come home. We want Marilyn to get her transplant."

However, the minister would not commit to offering support to other families facing similar challenges, and he pointed out that only a few other jurisdictions cover this type of cost, Newfoundland being one of them.

Still, he made it clear he wanted to find some kind of solution. He mused about having the province buy a house in Toronto to provide patients with a place to stay, and he committed to looking at Newfoundland's program and reviewing proposals from the lung association.

"I don't want to see anyone face more hardship, he said. "It's bad enough that they have to wait for a double-lung transplant."

MacKay says his wife developed a dry cough that just wouldn't go away about four years ago. After a battery of tests, she was diagnosed with interstitial lung disease, a progressive scarring of the lung tissue that is generally irreversible.

Doctors believe her condition stems from a bout of double pneumonia she had when she was a little girl.

Marilyn MacKay's left lung is so badly scarred it has stopped functioning, while her right lung is down to 28 per cent of its typical capacity.

She has been working hard to get ready for the transplant, having lost 100 pounds while continuously undergoing physiotherapy to make sure she is well enough to endure surgery.

But the constant worry over finances is taking its toll, her husband says.

"The stress is not good for her," he said.

Aside from lung transplants, patients from Nova Scotia seeking certain types of cancer therapy and other particularly complex surgical procedures must leave the province to be treated.

NDP health critic Dave Wilson said his party supports the Liberal bill in principle.

"The government needs to look at this," he said, recalling the case of a single woman from Nova Scotia who died a several years ago in Toronto while waiting for a lung transplant.

"The government was of no assistance," said Wilson. "She felt, right up until the end, that she was alone in this. And that's just not right."

“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

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

Sunday, November 23, 2008

UK baby receives liver transplant

Tiny Trinity home after life-saving transplant operation

Evening Telegraph

A BABY from Derbyshire has become one of the youngest children in the UK to have a life-saving liver transplant.

Trinity Walters was just six weeks old when she had a nine-hour operation to remove her liver and replace it with a donor organ.

Experts from UK Transplant, the NHS organisation that oversees organ transplants, said they knew of just 12 other babies who had successfully undergone organ transplants in the first few months of life – the youngest being just six days old.

Trinity became ill just weeks after her birth, on August 17, and specialists at the liver unit in Birmingham Children's Hospital diagnosed severe liver failure.

Distraught parents Leonna and David Walters, both 28, were told their daughter's only hope of survival was a liver transplant.


After an agonising 22-day wait, a donor organ became available and Trinity had her transplant on October 10.

After several weeks in intensive care she began to rally, and was finally allowed to return to the family home in Pinxton last Thursday.

Mrs Walters said: "It was the longest 22 days of our lives. She stayed on the specialist liver ward in the hospital and we were at her bedside the whole time. We never went home.

"The doctors said that only a new liver could save her life, so we knew it was our only hope.

"We were told the donor was a child who had died and I can't imagine what the parents of that child must have been going through. It was so brave of them to make the decision to donate their child's liver and save our daughter's life."

Trinity's short life has been dramatic from the start. She was delivered by her father at home because paramedics did not reach them in time.

Mrs Walters said: "I was having contractions but they weren't very regular, so the midwife said to wait a few hours before going to hospital.

"I had a bath, and then all of a sudden I was in agony. David called 999 but there was no way paramedics were going to reach us in time, so the operator told him what to do over the phone.

"He delivered her on the landing at the top of the stairs! By the time the ambulance arrived, it was all over."

At first, Trinity, who weighed 5lbs 6oz at birth, seemed healthy. But when she became increasingly jaundiced and failed to gain weight, she was referred to the Birmingham hospital for tests.

The hospital confirmed it had performed only four transplants on babies as young as her.

Dr Patrick McKiernan, paediatric hepatologist at the hospital, said: "Trinity is a tough kid and has got through so much. There is a shortage of organ donors anyway but particularly for very small children."

Trinity is now recovering at home, taking 28 different medications every day, and will need to take drugs for the rest of her life to prevent her body rejecting the new liver.

Her parents are now urging more people to sign up to the organ donor register.

Mrs Walters said: "It's something very few people think about but it could save a life. Giving blood is also vital – Trinity needed blood transfusions every day while she was waiting for her transplant.

"David has played for Amber Valley Rugby Club for 15 years, and they raised £700 in Trinity's honour by hosting a bonfire night, which they have given to the Children's Liver Disease Foundation.

"They have also been registering to give blood and donate their organs, as have many of our friends. We just hope that others who read Trinity's story will consider it too."

“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

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

Saturday, November 22, 2008

Transplant using trachea grown from patient's own stem cells a world first

Claudia Castillo, the patient in the ground-breaking operation. Photo: AP

Julia Medew The Age

IN WHAT is being hailed as a world first that could revolutionise organ transplants, doctors in Spain have replaced a woman's damaged windpipe using one created from stem cells in a laboratory.

Claudia Castillo, 30, a mother of two, is living a healthy life five months after receiving the transplant in Barcelona, her doctors reported in Lancet medical journal yesterday.

Scientists used "tissue engineering" to create the windpipe, or trachea — a technique that involved using a donor's windpipe as a biological "scaffold" for Ms Castillo's stem cells to grow around.

The donor's trachea was essentially scrubbed clean with a high-tech detergent solution before being lined with stem cells taken from Ms Castillo's bone marrow and cultivated in a laboratory.

Stem cells are "master cells" that can be manipulated in a laboratory to become any other cell in the body.

Professor Martin Birchall, an author of the study based at the University of Bristol in Britain, said the operation proved doctors were on "the verge of a new age in surgical care" that could radically improve surgeons' ability to treat patients with serious diseases.

Ms Castillo, who had tuberculosis, was facing the loss of her left lung after the tube-like branch connecting it to the trachea became infected and collapsed beyond repair.

The loss of a normal airway is devastating, and attempts to replace them have met with serious problems such as rejection by the immune system, the uncontrolled die-off of cells (necrosis) and lethal bleeding.

Because Ms Castillo's new trachea was made from her own cells, she has not needed powerful drugs to prevent her body rejecting the organ.

Avoiding the use of these drugs also means that, unlike other transplant patients, she will not be at increased risk of cancer and other diseases — another significant advance.

Scientists hailed the procedure as a medical milestone and predicted surgeons could regularly be replacing hearts with laboratory-grown organs within 20 years.

The team behind the operation hopes to replicate the procedure to grow voice boxes within five years and says that from there the door would be open to use the technology to create any organ including a bladder, kidney or even a heart.

Rodney Dilley, the principal scientist at Melbourne's Bernard O'Brien Institute who recently created beating heart muscle cells from human fat using stem cells, said the procedure was a significant breakthrough.

"The fact that the trachea has been functional for five or six months is fabulous," he said.

Dr Dilley said the operation was encouraging and meant scientists may now look more seriously at using biomaterial as "scaffolds" for stem cells.

Ms Castillo, who is originally from Colombia but now lives in Spain, can now look after her children, walk up two flights of stairs and even go dancing.

"I was scared at the beginning because I was the first patient, but had confidence and trusted the doctors," she said.

"I am now enjoying life and am very happy that my illness has been cured."

“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

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

Friday, November 21, 2008

Organ transplant couple met at transplant games

Brian and Janette Unwin
And the couple lived happily ever after ...

If you haven't participated in the transplant games and are still looking for love you might just find it at the games, so why not plan on going to the World Transplant Games August, 2009 in Australia if you are eligible?

By Nicola Davies Warrington Guardian, UK

AN Orford couple who met after both had organ transplants are urging potential donors to join the register to give others the gift of life.

Brian and Janette Unwin, of Mardale Avenue, married in June after meeting in 1992 at the annual British Transplant Games when they competed against each other in a volleyball contest.

Janette, aged 43, underwent her first transplant 26 years ago while hubby, Brian, aged 48, had a heart transplant 20 years ago.

Janette said: “The games are held to let people know what those who have had transplants can do.

“Before having a transplant people are often so desperately ill and afterwards it is amazing to be able to do things you could only have dreamt about.”

Janette spent three years receiving dialysis treatment before her body rejected the first donor kidney. She received her second transplant days before her 26th birthday.

She added: “It was a new lease of life. I couldn’t really do much before and I hope that anyone thinking of joining the donor register would sign up as it is helping someone to live after another person has died.”

“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

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



The couple, who are one of several to find love at the games, said they hit it off straight away.

Brian, who was born with a congenital heart defect, had various operations from birth to the age of 18 until his transplant at the age of 27.

He said: “If I hadn’t had a transplant I would be dead by now.

“I had been a blueish colour before the operation but straight afterwards I began to turn pink.

“My childhood had been very quiet, I couldn’t walk very far, let alone run. The difference to my life was amazing, I could breathe and I had energy.

“Since then I have travelled extensively and competed in the World Transplant Games in Japan.”

There are currently around 8,000 people in the UK who need an organ transplant but only 3,000 operations are carried out annually and every year, 1,000 people die waiting for a transplant.

This week saw Prime Minister Gordon Brown’s bid to opt-out of organ donation quashed in a Governmental review, but the couple were keen to highlight it should not be seen as an obligation.

Brian added: “We are so grateful to the donors and their families and we would like to see as many people as possible carrying a donor card.”

Thursday, November 20, 2008

The Importance of Organ Donation

by Sarah Scrafford

It’s a sad but true fact of life – we don’t value our health as long as we’re healthy; it’s only when we lose it that we realize what a treasure we’ve lost, and then it’s a case of crying over spilt milk. Our organs are precious, and when any one fails to perform what it’s meant to do, we’re almost at death’s door. Man and medicine have combined to make transplants possible, the procedure by which organs from dead or almost dead people are used to give new life to those who need it.

Millions of people are on organ transplant wait lists, and there are many others who lie in a coma or are brain dead and have organs that are ready and healthy for donation. As of April 2008, there are almost 100,000 people on the waiting list, with 106 being added every day, and 18 dying each day for lack of a donor. I was witness to a heartening incident recently – a friend’s son suffered a head injury in a road accident, and the doctors pronounced that there was nothing they could do for him.

Rather than sit and cry over their son’s condition, rather than keep him hooked onto machines for an indefinite period of time during which he would literally be a vegetable, the parents chose to donate all his organs, and 8 people lived through their boy. That’s a whole lot of emotions to contend with – sadness that their son is no longer alive mixed with the feel-good factor that comes with giving a new lease of life to 8 different people.

One aspect of organ donation that remains under a cloud is the use of money to induce people to donate – this has come under fire because it could tempt people who are poor and healthy to donate organs like kidneys which we need only one of to survive. And then there’s the greater danger of the organ black market where crooks harvest organs and sell them for exorbitant rates.

There’s no doubting that more and more people are going to join that already-long waiting list, and if we are to prevent unnecessary deaths, more of us have to create awareness about organ donation and sign on to donate our organs when we’re dead and gone.

By-line:

This article is contributed by Sarah Scrafford, who regularly writes on the topic of EKG Certification. She invites your questions, comments and freelancing job inquiries at her email address: sarah.scrafford25@gmail.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

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

Wednesday, November 19, 2008

Australian lung transplant recipient overcomes perplexing infection

Bendigo's miracle man: I could feel bug biting me

bendigoadvertiser.com.au

NEIL Gibson doesn’t mind having a joke about his new body image.
But when you look into his eyes, you know . . . this man has been to hell and back.

“I was nearly dead,’’ he said.

“Twice.’’

In a strange twist of fate, it was the first near-death experience that actually saved Neil from dying from the second.

After battling emphysema, Neil was in critical care in Bendigo with only days to live when the life-saving call came through.

A suitable lung donor had been found.

The call came at 2am on one of the few occasions Neil’s wife Glenis had left his bedside to go home for a rest.

When the hospital phoned, Glenis thought it was the call she had been dreading.

But by 12.30pm the same day, Neil was in theatre receiving a double lung transplant.

He left hospital three weeks later and stayed in a unit near the hospital for three months for ongoing treatment.

But a month after the transplant, pus started oozing from Neil’s wound.

Tests to determine the cause were inconclusive and antibiotics were having little effect.

Surgeons took three biopsies before putting Neil under the knife a fourth time.

This time, they removed flesh, skin and much of the left side of his chest.

The following day, Neil was again rushed to surgery because the bug was still in his body.

Skin grafts were taken from his leg to repair the damage.

“It was killing me,’’ Neil said.

“It was eating me . . . I could feel it biting me.

“They didn’t know what to treat it with, they knew nothing about the bug.’’

The biopsy was sent to Sweden, then America and on to Vancouver on Canada’s west coast before two drugs used for treating leprosy were imported from Sweden.

The bug was identified as mycobacterium abscessus, a rapidly growing mycobacteria that causes cutaneous and respiratory infections.

It’s believed Neil had the bug in his system after using potting mix in the garden.

Treatment for the bug is complex and the goal is often control rather than cure.

The drugs imported to treat Neil were designed to poison the mycobacteria, but the result was five months of hell.

“They were keeping me at a level not to kill me with the poison,’’ Neil said.

“But the drugs were worse than the lung operation.

“I was falling over, couldn’t walk, had no balance and couldn’t sit down.

“In the finish I didn’t want to live . . . I didn’t give up before the transplant, but on these drugs, I said `no, that’s it’.’’

After five months of treatment, Neil took himself off the medication.

To the surprise of his medical team, Neil improved and was soon well again.

“They call me the miracle man,’’ he said.

“I’m now mowing the lawn and back to gardening.

“Bu I’m bloody lucky.’’

Such is Neil’s appreciation for life and those who have helped him through the journey that he now volunteers at Chum House palliative care.

“They looked after me for two-and-a-half years,’’ he said.

Neil starts talking about how he feels to be helping those who are close to death . . . but quickly starts joking again.

“It can be a bit awkward,’’ he said.

His eyes told the rest of the story.

“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

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

Tuesday, November 18, 2008

Matched Genders Improve Heart Transplant Survival Rate


medHeadlines

Surviving a heart transplant seems to be easier when the new heart comes from a donor the same gender as the patient. Men getting male hearts fare the very best of all, according to a new study unveiled at the annual meeting of the American Heart Association, in progress in New Orleans.

Reporting on behalf of his research team, Eric S. Weiss, MD, of Johns Hopkins University in Baltimore, says matching genders result in 24% fewer deaths within 30 days of a heart transplant. This reduced risk of death drops only slightly over the course of the first year (16% to 23%) and the risk of organ rejection drops by about 19%, too.

Weiss says no one approved for transplant should forego the procedure simply because of mismatched genders. If other factors match, the quality of life with the heart of another gender is much more desirable than life without the transplant.

Weiss’ research team analyzed medical records of 18,240 adult heart-transplant recipients spanning 1998 through 2007. All transplant recipients were part of the United Network for Organ Sharing (UNOS) database.

The team found the long-term (nine years) survival rate was best for men getting male hearts but lowest for men getting female hearts. Other findings include:

  • The risk of death was found to be 61% for men getting male hearts and who were still alive nine years after transplant.

  • Women getting female hearts were at 25% lowered risk of death nine years later.

  • Women receiving male hearts were at 23% reduced risk of death on the same timeline.

  • But the risk dropped by only 15% for men getting female hearts.

The US Department of Health and Human Services / Health Resources and Services Administration provided support for the UNOS project.

“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

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

Monday, November 17, 2008

Chief medical officer criticises decision on organ donation

The (UK) government's chief medical officer has hit out at plans to abandon the reform of organ donation laws, saying scrapping presumed consent means dying patients in need of transplants have been left "on a knife-edge of despair".

By Nick Allen Mirror.co.uk


A review by the Organ Donation Taskforce, commissioned by the government, is expected to report on Monday that the British public is not ready to adopt a system of "presumed consent" under which patients' organs are automatically donated for transplants unless they or their families have explicitly objected.

Gordon Brown has appeared to favour an overhaul of the law, which currently requires people to sign up as donors, and is said to have been hoping the review would recommend presumed consent.

The chief medical officer, Professor Sir Liam Donaldson, said that with an ageing population the demand for organs would only increase and there could also be new possibilities for ovary and pancreatic transplants.

He said: "People are dying, people are suffering and many people are living on a knife-edge of despair waiting for a phone call that never comes.

"My view has always been that we need to act with solidarity, generosity and humanity to give these people a future."

The Organ Donation Taskforce was set up to help increase the number of donors and includes healthcare professionals, lawyers and ethicists.
Its hostility to a change in the law will be welcomed by some patients' groups who are strongly opposed to presumed consent.

Mr Brown himself voted against adopting such a system in 2004 but, earlier this year, indicated he had become more favourably disposed towards it.

He said: "A system of this kind seems to have the potential to close the aching gap between the potential benefits of transplant surgery in the UK and the limits imposed by our current system of consent."

More than 8,000 people in Britain are currently on waiting lists for donor organs and only 3,000 transplants are carried out each year.

But the taskforce believes a presumed consent system would do little to increase the number of life saving transplants.

Its recommendations are not binding on the Government and ministers may still bring new legislation forward to introduce presumed consent.

However, last week, an influential committee of peers also found no "convincing case" for a change.

Baroness Howarth of Breckland, who led an investigation into the supply of donor organs in the EU, said the government's top priority should instead be a restructuring of existing transplant services.

She said there was a "severe shortage" of organs available for transplant in the UK and warned that it was a "serious public health problem".

The UK's level of organ donation is 13.2 donations per million people, substantially behind the EU average of 18.8 and Spain's rate of 34.
However, the committee concluded that the high rate in Spain was down to improved training and organisation, rather than the country's presumed consent law which it adopted in 1979.

In Britain last year 482 people died while awaiting transplants and hundreds of others did so after being removed from the waiting list when they became too ill.

A quarter of the population are registered donors. Strict rules on donors having to give explicit, rather than presumed, consent were set in the Human Tissue Act of 2004 after Alder Hey Hospital in Liverpool and the Royal Bristol Infirmary removed thousands of organs from dead children without their parents knowing.

“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

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

Sunday, November 16, 2008

Dear Hannah, Life is worth living, says teen transplant success story

Hannah Pudsey was 13 when she faced having a heart transplant – just like Hannah Jones. (see previous post about Hannah Jones' refusal to have a transplant)

Mirror.co.uk

Born with two holes in her heart and a wrongly-positioned valve which swelled her heart to the size of a rugby ball, her family publicly appealed for donors to save her young life. After an agonisingly long time on the transplant waiting list, she had the seven-hour operation in February 2001.

Here Hannah, now 20, of Nafferton, East Yorkshire, reveals to JULIE McCAFFREY the contents of a touching letter to her namesake who has chosen not to have the op.

As soon as I heard your story I felt your pain, and I’m thinking of you all the time. Because at exactly your age I faced having a heart transplant too.

You have been so brave to have made such a big decision not to have the operation. People might think you’re too young to make a life or death choice at 13. But I know that when you’re so poorly and spend so much time in hospital, hearing all the brutal facts about your illness and chances of survival, you grow up quickly.

When you look at your family you must realise how sad they’ll be without you, but you must be a very strong character to still be so adamant about not having a transplant.

That courage is admirable.

I would never dream of trying to convince you to change your mind because that decision has been hard enough for you already. But I would like you to know what my life’s been like in the seven years since my op at 13.

I was poorly since I was a baby so for me, the thought of a heart transplant always seemed like a new beginning, my chance of a normal life.

I stayed positive and clung on to hope, even when I was told that without a transplant I had only six months to live.

Although I knew I needed my parents’ consent because I was under 16, the hospital always ensured I was told all the facts and had a big part in the decision making. For me, declining a transplant was never an option. Although I tried so hard to remain upbeat, I couldn’t help contemplating my own death. At one stage I made a memory box for my family to open after I’d gone. It had pictures of me all dressed up to go to a West End show and on happy family occasions, and emotional letters for my parents and brother Ben. I taped it closed and left it on a shelf.

When I took it down, opened it up and put all the photos back on display when I was out of the danger zone after my transplant, I felt elated. Yes, I take four kinds of different drugs each day. But I’m so used to that it’s no big deal. Side-effects include frequent colds and slightly shaking hands, but to me they’re a small price to pay.

Now I celebrate every day. There have been happy milestones, like winning my place at college to become a nursery nurse and passing my driving test. But to be honest, I celebrate every day because I’m here.

I love doing the normal things – getting up in the morning to go to college, working my shift at a petrol station to earn money to have a great weekend, going out on a date.

These are things most people take for granted, but I never will because I never thought I’d live to this age.

I turn 21 in January and my mum and I have been planning a big party. But I keep having to pinch myself.

For a few years after the transplant I was too scared to make long-term plans. But now I feel so fit and healthy I don’t hesitate to look to the future. I would like to get married, live in my own house and work with children with special needs.

I’ve met a lot of people who have had heart transplants since my own, and the majority are in good health now.

I know your family are very loving and supportive and I’m sure you have lots of good friends. But if ever you wanted someone else to talk to please get in touch. I’d love to have a chat.

I sincerely hope you make the most of the time you have left and ensure you tell everyone who matters to you how much you love them. Thinking of you and your family.
Love Hannah xxx

“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

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

Saturday, November 15, 2008

British girl allowed to refuse heart transplant


By JENNIFER QUINN Associated Press

LONDON (AP) — Hannah Jones, 13, is not afraid of dying — she is afraid of spending her remaining days in a hospital bed.

In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart transplant operation.

That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or if health authorities have an obligation to intervene.

Hannah, from Marden, 145 miles (233 kilometers) from London, was diagnosed with leukemia at age 4. Doctors later found a heart defect. In eight years, she has had chemotherapy and nearly a dozen operations.

"I've been in hospital too much — I've had too much trauma," she told Sky News on Tuesday.

Hannah's story surfaced when her parents complained about medical officials who threatened to force her into a hospital.

"They phoned us on a Friday evening and said that if we didn't take her in they'd come and take her. We still refused to take her," said her mother, Kirsty Jones.

A social worker was then sent to interview the teenager about her refusal to have a heart transplant to treat her cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails. The social worker backed Hannah's decision.

Hospital officials said it is standard procedure to make sure both the child and the parents understand the consequences of any decision.

"Clearly the welfare of the child is paramount," said Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "Pediatricians will always consider the child's best interests at all times and this would include the child's medical, emotional and psychological well-being."

"No one can be forced to have a heart transplant," she said.

In Britain, children younger than 16 aren't automatically considered legally competent to make decisions about their health care. Still, British courts have said that a child's decision can be valid if they have "sufficient understanding and intelligence to enable him or her to understand fully what is proposed."

According to the Department of Health, when a child is considered competent and refuses treatment, their decision will be respected. When a consensus can't be reached, the patient can be overruled by either parents or guardians, or in more unusual circumstances, by the courts.

Dr. Tony Calland, who chairs the British Medical Association's medical ethics committee, told BBC radio that a 13-year-old like Hannah, supported by her parents, should be "perfectly capable" of making such a decision.

"Decisions to refuse life-prolonging treatment are always extremely difficult and emotive," he said. "What is paramount is that decisions are made in the best interests of the patient."

Heart transplants are risky operations for any patient. Transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines sometimes have side-effects, which make the body more susceptible to dangerous infections.

"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said. "There is a chance that I may be OK, and there's a chance that I may not be as well as I could be, but I'm willing to take that chance."

In the United States, the issue of refusing treatment is generally decided on a case-by-case basis, said Dr. Jerrold Eichner, chair of the American Academy of Pediatrics committee on hospital care.

He said the ideal was when a child, their parents and their doctors agreed as to how to proceed. Disagreements can be handled by hospital ethics committees or, in extreme situations, by the courts — though Eichner said that was rare.

In Switzerland, anyone deemed to have the "power of judgment" can decide whether to receive treatment or not, and there is no formal minimum age. If parents contest their child's decision, then the minor can go before the state guardianship authority to ask for a ruling.

Michelle Salathe of the Swiss Academy of Medical Sciences said it was inconceivable that a doctor would force a child to undergo a heart transplant against the wishes of both the patient and the parents.

In Austria, children under 14 are not allowed to refuse medical care, but 14- to 18-year-olds can. And under Greek law, parents have the final say on medical treatment until their child turns 18.

Associated Press Writers William J. Kole in Vienna, Elena Becatoros in Athens and Frank Jordans in Geneva contributed to this report.

“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

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

Friday, November 14, 2008

Hospital staff boosts organ-donation awareness

Bright statement: Hospital staff raise awareness for organ donation. Picture: Helen Nezdropa

Liverpool Hospital staff's colorful support

BY KATRINA VELLA liverpoolchampion.com.au

LIVERPOOL Hospital operating theatre staff ditched their usual hairnets last week and went for a colorful option instead. But the change wasn't about looking good, it was all in the name of organ-donation awareness.

The rainbow colors represent Zaidee's Rainbow Foundation, which was set up after a girl named Zaidee Rose Alexander Turner became the first organ donor younger than 16 in her home state of Victoria when she died, aged 7, in 2004.

Katrina Coppin, the organ and tissue donor co-ordinator for the South West Area Health Service, said there was a need for organ donors and that families should sit down and talk about the issue.

"The biggest barrier for increasing organ donation rates in NSW is that families do not know the wishes of their loved one when organ donation is raised, therefore they are more likely to decline organ donation," she said.

"So it is crucial that everybody discusses their wishes with the families."

Len Goldsworthy, the president of the Australian Heart and Lung Transplant Association has had a heart and lung transplant. He said it was hard to believe how much difference a donor could make to a person's life.

"I owe a great debt to my donor and an equal debt to my donor's family," he said.

Mr Goldsworthy said there were several reasons why people did not discuss being an organ donor with their family but they should.

Visit http://www.organdonor.com.au for more information.

“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

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

Thursday, November 13, 2008

Michigan transplant recipient puts new lungs to good use

ON HER OWN — Diana Shackleton and her father, Keith Smith, independently climb the top of the stairs at Iargo Springs. Shackleton recalled that her father used to have to carry her up the stairs as a child before her bilateral lung transplant. - Photo by Karen Rouse

Iargo Springs climb celebrates gift of life for Oscoda woman

by Karen Rouse Iosco County News-Herald

OSCODA — Diana Shackleton began her descent of the 300-step path leading to Iargo Springs in Oscoda late Friday afternoon.

She said that, more than three years ago, it would have taken her 30 minutes to climb back to the top. This year, the effort took just seven minutes. Last year, the trek was 10 minutes.

The 26-year-old Oscoda woman underwent a bilateral lung transplant on Nov. 7, 2005, and celebrates the successful surgery by walking the stairs at Iargo Springs each year on the anniversary date.

“I do it because I can and also to honor the donor,” said Shackleton. “I want to put these lungs to good use.”

“It’s almost like having another birthday, yet it’s more important to me than my actual birthday,” she added.

When she was 9 weeks old, Shackleton was diagnosed with cystic fibrosis. The severe damage to her lungs placed her on a transplant list in June of 2005. The next month, she married Justin Shackleton.

The day after her 23rd birthday, on Nov. 6, 2005, she received news that a pair of lungs was available. Her diseased lungs were replaced with the donated ones at the University of Michigan Hospital in Ann Arbor the following day.

Shackleton remained in the hospital for four weeks and, once home, participated in the St. Joseph pulmonary rehabilitation program.

The lung donor was a 25-year-old woman, said Shackleton. Her identity was discovered two days after the surgery by Shackleton’s mother, who was told of an article in the Bay City Times about the donor. A phone call was made to her mother.

“I think you’re the mother of my daughter’s lungs,” said Shackleton’s mother, Lyn Smith.

Later, Shackleton met the donor’s family and was told that she was among seven people who received organs from the deceased.

Shackleton said that she places roses on the donor’s grave in Bay City each year since receiving the transplant.

The 2001 Tawas Area High School graduate is currently a group leader for the 4-H sponsored Iosco County Teen Mentoring Program. She is active in local live drama productions, both in front of and behind the curtain. Just three months after her surgery, she tried out successfully as a cast member of the Tawas Bay Players’ production of the “Wizard of Oz,” singing and dancing on stage as a poppy. She said that she also loves performing karaoke and likes to write.

“She does amazingly well,” said her mother.

Wednesday, November 12, 2008

'Patients with liver failure are being turned away. It's crazy'

It's only too often that we learn about transplant patients, some who have been on the waiting list for years, being turned away due to the lack of hospital resources such as surgeons and available beds. This particular case occurred in the UK but we see it happening more and more everywhere.

guardian.co.uk

A senior doctor at Birmingham Children's Hospital gave The Observer an insider's account of the many problems there. He spoke on condition of anonymity:

"The Birmingham Children's Hospital is a major regional and national centre of excellence in paediatric care. In some of what we do, we are recognised as being world-class. Yet there aren't enough beds at the hospital for all the children who need to be treated in many of what are called our "tertiary services", such as children who need an organ transplant, or have a flat head, a complex heart problem or a major facial deformity, or who require brain surgery.

"For example, despite being a national centre for chronic liver problems in children we have to turn away some patients with acute liver failure and send them to Leeds or London because there are no beds available. It's crazy.

"It's the same with operating theatres. We have seven, but they're full most of the time. We need at least two more. Surgeons feel hampered by a lack of space. That means they can't treat the number of patients that they would like.

"The most senior doctor in the liver transplantation unit has been asking hospital management to hire a second consultant to perform and supervise these operations. It simply wasn't viable to continue relying on the one consultant to do all these complex procedures, some of which require several surgeons. But we were told that there was a lack of resources. It's only recently, after three years of lobbying, that the hospital has agreed to recruit a second consultant.

"Some of the consultants here are disillusioned. They feel that they have been regularly raising important issues with the hospital's management for two or three years, but that very little has been done.

“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

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