Tuesday, September 30, 2008

The mystery girl and organ donation

"If you want to be an organ donor, you need to tell the family members who would be responsible if you died"

By David Clemons The Sand Mountain Reporter

I didn’t recognize the number popping up on my cell phone, and I was in face-to-face conversation anyway, so I didn’t take the call.

The voice mail left behind, though, gave me concern. It was from a woman at the University of Nebraska who thought my number belonged to a woman who was listed as the grandmother of the person in question.

The caller said she needed to get in touch with the girl’s parents and hoped I could help.

I figured it was important, so I called the number back. I figured I might get a dean’s office or something like that at the university.

Instead, I was surprised to get the Nebraska Medical Center Organ Transplant Program.

Immediately, I thought the worst. The university must have been trying to reach the parents of this girl who died in some kind of car accident or something, and they needed to get permission to harvest her organs.

What a horrible telephone call that must be to get.

After leaving a message that the caller had a wrong number, I got a call back from the woman, who wanted to ensure that she’d tried the number she had in her files.

I knew it was none of my business, but I’m paid to ponder things that are none of my business. So I asked, “Is everything OK?”

Yes, I was told, it would be if they were able to get ahold of the girl’s mother.

I said a prayer for whatever the situation was.

I told the story to my wife, the lovely Carla, when she got home.

Carla looks at things a little better than I do. She said there was a chance the call was designed to tell the parents that an organ had come in for their daughter’s use.

I hadn’t thought about it that way, but I hope she was right.

The whole incident made me think about organ donation.

My driver’s license says I’d like to be an organ donor, but I know that’s not enough.

Once, for another paper, I wrote a story about organ donation. During an interview, a woman at the Alabama Organ Center said the driver’s license checkoff is nice, but it isn’t enough.

She asked, “Does your wife know your wishes?”

Actually, Carla and I had discussed that, but the AOC representative made a good point.

If you want to be an organ donor, you need to tell the family members who would be responsible if you died.

They need to know your wishes.

Organ donation allows people who need a second chance at life to receive it. It’s a wonderful way to do something good for a fellow human being.

In fact, 3,195 Alabama patients are on the waiting list for a transplant.

For more information, contact the Alabama Organ Center at 800-252-3677 or visit their web site.

“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, September 28, 2008

New Brunswick mom needs double lung transplant

"Trina will soon have to undergo an online interview at The Moncton Hospital with staff at Toronto General Hospital. She will then have to go to Toronto for a wide assortment of tests"

by dwayne tingley - Times & Transcript, New Brunswick, Canada

Melissa Rushton often stares at her niece and shakes her head in amazement.

Leah, who turns five next month, is a spinning ball of energy from dawn until bedtime and sometimes beyond. She just started kindergarten at Gunningsville School in Riverview, and it's a good thing because her mother Trina Murray needs those few hours each day just to catch her breath.

Melissa and Trina are sisters. Melissa said yesterday that Leah behaves just like Trina did when she was five-years-old.

"They are the same way -- go, go, go all of the time and I don't know how they do it," Melissa said. "Leah keeps Trina running most of the time. It takes its toll sometimes."

Five years ago, Trina became the first cystic fibrosis sufferer to give birth at The Moncton Hospital. A few months ago, she learned she's going to need a double lung transplant in order to survive.

"In some ways, it's been hard for Trina to see her little girl go to school this year," Melissa said.

"They are always together so it's hard to say goodbye. In another way, it gives her a badly needed break. It's a difficult situation with Trina needing the transplant. The little girl needs her mother."

Trina has had chronic lung infections and pneumonia and she has experienced other breathing difficulties in recent years. Her lungs are not functioning well and her overall condition is in decline.

"She gets winded and she's not able to do much physical activity at all," Melissa said. "Just walking can be difficult sometimes."

Trina will soon have to undergo an online interview at The Moncton Hospital with staff at Toronto General Hospital. She will then have to go to Toronto for a wide assortment of tests.

Officials in Toronto will then tell her when she must move to the Ontario capital so she can be put on a list for the double lung transplant.

"Anyone waiting for this kind of transplant must be within two hours of the hospital or it can't be done on time," Melissa said. "Unfortunately, Toronto is the closest hospital that does this operation."

The process is long, heart-wrenching and expensive.

The family is attempting to raise money to cover the costs of flying Trina to Toronto and her accommodations there. They also hope to send Leah up to Toronto several times so she can be with her mother.

"A lot of people in Albert County are telling us they are going to help because that's where she grew up and that's where most of us still live," Melissa said.

"The people at the (Dawson Settlement) church have helped and the Alma church has donated $200 and a painting for us to sell or put in a basket. We want to have some bake sales, raffles, barbecues, pancake breakfasts or whatever it takes.

"It's hard for us because we've never really done this before. We've got to make this work so Trina can have the operation that's going to save her life."

Anyone looking to assist in fundraising is asked to contact Melissa by e-mail at lungs4trina@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

Saturday, September 27, 2008

Alonzo Mourning to be voice of UM organ transplant program

By Howard Cohen Miami Herald:

Alonzo Mourning, the Miami Heat center who received a kidney transplant in 2003, is turning his attention to raising awareness of organ transplantation.

On Thursday, he signed on as spokesman for the Miami Transplant Institute at Jackson Memorial Hospital and the University of Miami Miller School of Medicine.

"I'm a living testimony that transplants save lives," he said.

Since its founding in 1979, the Miami Transplant Institute has conducted 3,000 liver transplants and 7,000 kidney transplants.

Last year, the Institute performed 28 heart, nine lung, 254 kidney, 16 pancreas and 191 liver transplants.

"Bad guts out; new, great guts in," joked Dr. Pascal J. Goldschmidt, the dean of UM's School of Medicine.

Mourning knows the difficulty of getting a transplant and following through with a detailed regimen to prevent the body from rejecting the new organ. Much of that regimen involves expensive medications -- he says his tab runs $1,000 a month -- that also tax the body.

"I had to push 200- to 300-pound men around the court, and that wasn't easy," he said. "I can imagine how a young child can feel to take these medications.

"With my voice and influence, I can draw attention to the Institute and help children overcome obstacles. Research will lead to beating the problems of organ rejection."

The basketball star had another message for the community. Get yearly checkups -- even if it's at a free clinic for a blood-pressure exam.

"A lot of people don't go and get checkups until something serious happens to them. That's the biggest dilemma. We can prevent a lot of these diseases or disorders from evolving if you catch them early enough."

“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, September 26, 2008

Germany Seeks Organ Donors with New Campaign

Donor Card

Two-thirds of Germans say they want to donate their organs in the event of their death. But they haven't yet done much to back it up. A new pharmacy campaign aims to convince more in Germany to register as donors.

DW-World.de - At any given time, around 12,000 critically ill Germans are waiting for an organ transplant. Each day, three of them die. That's because there aren't enough organs -- only around 4,000 on average are donated each year.

A recent poll by the leading German opinion research firm IPSOS found that more than two-thirds of Germans were willing to become organ donors. But only 16 percent (about 13 million Germans) actually have a donor identification card.

To help bridge this gap, the German health ministry has teamed up with the publisher of two free health magazines available at pharmacies in an unusual outreach campaign.

Ten million organ donor card forms will be inserted into the magazines accompanied by articles emphasizing the need for organ donors, as well as assuring readers that their organs will only be taken in the event of their death.

Largest organ campaign

Germany's Health Minister Ulla Schmidt called it "the biggest campaign promoting organ donation that has ever been mounted in Germany," and said she was convinced it would significantly increase the number of card-carrying organ donors.

Previously, those in Germany who wanted to become registered organ donors had to go to a health ministry Web site and fill out the release form, which they could put in their wallet.

The chairman of Germany's Foundation for Organ Donation, Thomas Beck, said wider distribution of the required form was urgent. In the first six months of 2008, 586 Germans donated their organs after their deaths, 81 fewer than in the equivalent period in 2007.

"More than four million people visit our 21,500 pharmacies each day," said Magdalene Linz, president of the Federal Council of Pharmacists, adding that the health-consciousness of their customers and the ease of the application would help increase the number of organ donors.

Germany still behind

Still, the new campaign does not go nearly as far in taking measures to broaden the donor pool as in other countries.

In the United States, applicants for a driver's license or state ID card are asked if they would like to become an organ donor, ensuring that most people have a chance to register.

Some European countries, like Holland, Denmark, Austria and Spain, go even further, presuming consent from potential donors. A similar "opt-out" system, which allow potential donors or their surviving relatives to reject donation but dispense with the prior release forms, is under consideration in Britain.

In an effort to increase organ availability, the European Parliament in April passed a measure instituting an organ donor card that could be recognized Europe-wide, aimed at clearing up issues of consent when patients die abroad. The EU also set up an integrated organ bank that would broaden the pool of potential donors across Europe.

“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, September 25, 2008

Lung transplant patient housing in Toronto

NOTE: THIS FACILITY NO LONGER EXISTS. FOR POSSIBLE FINANCIAL ASSISTANCE WITH HOUSING IN ONTARIO PLEASE CONTACT ANN MCGUIRE: annmcguire@rogers.com or Telephone 416-233-3614.

click for larger image

THE HIGHLANDS OF WOODBRIDGE
8040 Kipling Avenue
Woodbridge, Ontario
(click photo for larger image)

"the Civitan Club team has been able set the rent at $675 monthly for the luxury condos and includes all utilities - hydro, telephone, internet, etc. The units are completely furnished with brand new high quality furniture"

Tuesday I visited the Toronto Lung Transplant Civitan Club's housing project with Linda Lycett from Civitan. Linda received a single-lung transplant 16 years ago and has been a tireless advocate for fund raising to help our lung transplant community in Toronto.

Over the years the Civitan Club has worked hard to raise money to acquire suitable, affordable accomodation for out-of-town lung patients waiting for a transplant. Their dreams have now come true and enough money has been raised to purchase two spacious 1,100 sq ft units that will accommodate a total of four patients and their support persons.

People come to Toronto from across the country to wait for lung transplants at Toronto General Hospital, to get checkups after transplants or to stay while healing. (Once they receive their transplant patients must vacate the units after the 3-month recovery period). Living and housing expenses are major financial concerns for patients. They not only have to maintain residences back home but they are also burdened with thousands of dollars a month of costs in Toronto for rent, travel and food, etc.

Thanks to generous benefactors and donors, the Civitan Club team has been able set the rent at $675 monthly for the luxury condos and includes all utilities - hydro, telephone, internet, etc. The units are completely furnished with brand new high quality furniture and the gourmet kitchen is completely outfitted with top-of-the-line appliances. The cupboards are fully stocked with very high quality dishes and cutlery. Special deals were offered by suppliers and some items were donated outright. Many upgrades such as flooring, etc. are included and Civitan members have donated their time and skills to further enhance the amenities such as installing a luxurious ceramic backsplash in the kitchen.

The common living room has a brand new flat screen television and comes with cable tv supplied. The furniture and beds are top-of-the line (patients must provide their own bedding). Here's a layout of the Sienna unit that Civitan Club has puchased two of:

click for larger imageclick for larger image

    Some of the other amenities:
  • A private party room with bar, an adjacent billiards and cards room, and a catering kitchen, complete with espresso machine... which you can reserve for get-togethers with family and friends.
  • A well-equipped fitness room where you can work out, with his and hers saunas and change rooms.
  • A separate lounge and meeting room.
  • Two furnished guest suites for when you have visitors from out of town.
I was deeply impressed by this home-away-from-home that the Toronto Lung Transplant Civitan Club has provided for patients waiting for their life-saving surgery. And because of the common living area, patients and their loved ones in similar circumstances will be able to bond with each other and share their ups and downs, knowing what each other is going through. From my own experience, I know they will quickly become a family.

The Civitan members are to be commended for this wonderful achievement and I am in awe of them.

Contacts for information or to make a donation:

The Toronto Lung Transpant Civitan Club Inc.
600 The East Mall, PO Box 11546
Etobicoke, ON M9B 6L1

Secretary Ann McGuire
annmcguire@rogers.com or
Telephone 416-233-3614.

Treasurer Judy Clarke
jclarke100@sympatico.ca
Telephone 905-689-5297.

President Mavis Bullock
ltrimble917@rogers.com
Telephone 416-438-9927

“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, September 23, 2008

Brit woman visits exhibition displaying her own heart

From Newspost Online

Visiting an exhibition in London, called The Heart today, was certainly a heartfelt experience for Briton Jennifer Sutton, for one of the items on display was her own heart.

According to reports from The Fortean Times, the 23-year-old resident of New Forest, UK, had a heart transplant at Papworth Hospital, Cambridge, on June 4 last year.

However, Jennifer later lent her heart to the Wellcome Collection for the exhibition to make the people aware of donation and Restrictive Cardiomyopathy, the disease that would have killed her.

“Seeing my heart for the first time is an emotional and surreal experience. It caused me so much pain and turmoil when it was inside me. Seeing it sitting here is extremely bizarre and very strange. Finally I can see this odd looking lump of muscle that has given me so much upset,” The Daily Telegraph quoted her, as saying.

She added: It’s tremendous it has become an object of fascination and will get people thinking about the disease, heart transplants and organ donation.”

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

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

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

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, September 22, 2008

Resetting immune system in bid to beat scleroderma

This experimental study, where patients own stem cells are taken from their blood, stored and then transplanted back, offers hope and promise for the those whose immune systems are attacking their bodies.

By LAURAN NEERGAARD

WASHINGTON (AP) — First Bari Martz's fingers turned blue. Then she started gasping for breath, and her joints stiffened so that she couldn't even open her hands. Doctors diagnosed scleroderma, part of an insidious family of diseases where the immune system attacks a patient's own body, sometimes enough to kill.

Worsening rapidly, the Florida woman took a gamble: Doctors stored stem cells from her blood and then wiped out her faulty immune system. Her reinfused stem cells seem to have let a healthy new immune system take root, stopping more damage and, nearly two years later, letting her lungs and joints heal enough for better function.

Studies here and in Europe are aiming to reset immunity for patients with severe scleroderma — work that, if successful, could cast new light on numerous autoimmune diseases, from lupus to multiple sclerosis.

While early reports are promising, it remains experimental, recruitment is slow and a fundamental issue is unsettled: Do doctors need to take the radical step of killing all the bad immune cells, or just suppress their function?

"The notion that more immunosuppression is better is somewhat logical," says Dr. Ellen Goldmuntz of the National Institutes of Health, which is funding some of the research. "The question's how best to do it."

Autoimmune diseases are among medicine's most frustrating mysteries: What makes an immune system that worked fine for years suddenly run amok, and why are middle-aged women most vulnerable? And arguably most mysterious is scleroderma, where the immune system somehow mistakenly attacks connective tissues that support the skin and internal organs — thickening skin, stiffening joints, destroying blood vessels, and sometimes killing through kidney and lung failure.

About 300,000 Americans have various forms of scleroderma, often confined to the skin. But a third have systemic scleroderma, the most severe form that invades internal organs. Only the cancer drug cyclophosphamide is proven to slow severe scleroderma, but its effects are modest. About half of severely affected patients die in five years.

Enter stem cell transplants. Similar to a bone marrow transplant, it's a risky treatment usually reserved for leukemia. A type of stem cell that generates immune-system cells is culled from patients' blood, and then radiation or chemotherapy or both destroy circulating immune cells — leaving the person vulnerable to life-threatening infections until the stem cells are returned and produce again.

Why would reinfusing a patient's own stem cells help? The theory is that someone genetically predisposed to certain autoimmune diseases stays healthy until something in the environment triggers misfiring immunity — meaning stem cells shouldn't be diseased, explains Dr. Keith Sullivan of Duke University, who is leading the largest study of the transplants, called the SCOT trial.

About 30 hospitals in the U.S. and Canada are recruiting 226 patients with severe scleroderma to be randomly assigned either the stem cell transplant or a year of cyclophosphamide at doses 50 percent higher than is standard today.

A pilot study of nearly three dozen scleroderma patients, published last year, counted eight transplant-related deaths, teaching researchers to take some extra safety steps including shielding lungs and kidneys during radiation. Still, 64 percent of transplant survivors got no worse for a median of four years and counting — and some had remarkable healing of damaged skin and lungs.

In-depth looks at a few transplant recipients show immune cells can "come back in a reprogrammed and normalized way," Sullivan says. Researchers recently reported a regrowth of blood vessels once thought impossible.

"There wasn't a choice," Martz, now 49, of Parkland, Fla., says of volunteering for the SCOT trial. She was losing about 10 percent of lung function a month, and feared she had less than a year left to live when she underwent her January 2007 transplant. "If I died from it, well, at least I went out fighting."

For now, "I'm great," she says. Her lung function jumped and is still improving, she can flex her hands again, and can even climb stairs, if slowly. "I'm continuing to get better."

A similar scleroderma study is under way in Europe; smaller pilots in lupus and a few other autoimmune diseases have signaled promise; and other U.S. researchers are trying stem cell transplants as a boost to a suppressed, not destroyed, immune system.

One hurdle to finishing these studies and learning if the approach really works: Transplants cost $125,000 to $175,000, and while some insurers pay for patients enrolled in government-certified studies, others won't. Martz's primary insurer in Florida refused; a backup policy from her husband, a retired New York police officer, did pay.

“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, September 19, 2008

Kidneys from older donors function very well

NEW YORK (Reuters Health) - Kidneys taken from living donors over the age of 55 and transplanted into older patients with kidney failure resulted in "excellent outcomes" in both individuals, according to data from the Organ Procurement Transplant Network/United Network for Organ Sharing.

"With looming changes to organ allocation in the U.S., living donor transplants from older living donors may prove to be an important avenue for elderly patients awaiting kidney transplantation," researchers report in the American Journal of Kidney Diseases.

Led by Dr. Jagbir Gill at the University of British Columbia in Vancouver, the research team studied 23,754 kidney transplant recipients 60 years or older at the time of transplantation, which was from 1996 to 2005.

Nearly one third received kidneys from living donors; 1,133 donors were older than 55 years and 5,873 were younger.

Among deceased donors, 1,219 met the standard donor criteria and 4,551 were "expanded criteria donors," defined as donors older than 60 or those between the ages of 50 to 59 with two of three adverse conditions: high blood pressure, a history of stroke, or terminal serum creatinine level greater than 1.5 milligrams per decaliter, a sign of kidney dysfunction.

After a more extensive analysis, the researchers found that graft survival was superior in all recipients of living donor transplants compared with deceased donor transplants," Gill's team reports.

Among living donor recipients, 4-year patient survival was only slightly better for younger donors than for older donors (84.2 percent vs. 82.4 percent). Corresponding rates in recipients of standard-criteria and expanded-criteria donors were 78.5 percent and 67.5 percent, respectively.

In further analysis, the relative risk of death was nearly tripled for organs from expanded-criteria deceased donors compared with those from older living donors.

Survival at 4 years was greater than 80 percent, even among recipients of kidneys from the oldest living donors (over age 65), the report indicates.

"New proposals to amend organ allocation are putting considerable emphasis on increasing the number of functioning years gained from each diseased donor kidney transplant," the authors note, a policy likely to result in even longer wait times for elderly patients who are already at increased risk of dying before an organ becomes available.

Therefore, they advise, "Our findings support the practice of living donor transplantation with appropriately selected older living donor in elderly recipients whenever possible."

Although older donors did not appear to suffer more complications than their younger counterparts, follow-up data were available for fewer than 25 percent. "Clearly," Gill and his group conclude, "there is a need for further prospective study of donor outcomes, and multiple centers are developing donor registries for this purpose."

SOURCE: American Journal of Kidney Disease, September 2008.

“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, September 18, 2008

Organ donation bill introduced in Australia

Congratulations to the Australian government for this intitiative to establish a coordinated approach to organ donation in that country.

From theage.com.au:

September 18, 2008
Prime Minister Kevin Rudd has personally introduced legislation to parliament that aims to establish a national organ donation scheme.

Establishing a scheme was one of the key issues raised in the 2020 Summit earlier this year, he said.

At any one time in Australia, there were 1,800 people waiting for an organ transplant, but there were just 198 deceased organ donations last year, Mr Rudd told parliament.

"For too long, organ donation rates in Australia have lagged behind many other nations, despite high levels of community support for organ donations.

"For too long, Australians have been left desperately waiting, month after month, for a transplant that could mean the difference between a normal healthy life and debilitating, chronic illness. And in some cases, the difference between life and death.

"For too long, people have talked about the need to lift organ donation rates but there has been no action."

The aim of the bill - which provides funding of $136.4 million - was to help lift Australia up to world's best practice in organ and tissue donation, Mr Rudd said.

About $46 million will go towards the establishment of the Australian Organ Donation and Transplantation Authority that will ensure a coordinated and consistent approach to donations.

Some $67 million will employ specialist staff dedicated to organ donation, who will work closely with emergency departments and intensive care units at selected public and private hospitals.

Hospitals will receive $17 million to help them meet additional staffing, bed and infrastructure costs associated with donations, while $13.4 million will be spent on a publicity campaign.

About $1.9 million will fund counsellors to support donor families.

The measures would mean every family of a potential organ donor would be asked about organ donation, Mr Rudd said.

Despite one million more organ donor registrations since 2002 bringing registrations to a total of six million, there had been no increase in the number of lives being saved through transplants, he said.

"That's what we try to solve, that's what we try to deal with through this legislation.

"I would like to make an appeal to all Australians. If you are not now on the organ donor list, please think about it and get your name onto it."

Opposition Leader Malcolm Turnbull says the opposition strongly supports the bill.

"I want to congratulate the prime minister for bringing forward this bill," he told parliament.

"Promoting organ donation is a vital national objective. We are delighted it is being pursued with new measures under this government.

"The prime minister can count on our support on this legislation and in other measures in the future if this legislation proves to be inadequate.

"We will continue to work in a genuine bipartisan fashion to promote organ donation."

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

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

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

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, September 17, 2008

Without a donor, Jim Telson would be another heart disease statistic

From the Longmont Times-Call in Colorado:

By Pam Mellskog

LONGMONT — Jim Telson’s lifesaving heart transplant experience began at 11:30 p.m. when the phone rang as he soaked in the bathtub at home reading information about what to expect.

As the seventh person then waiting in Colorado for a new heart, Telson, 48, figured he had six months to a year before he got the call.

Staff at the University of Colorado Hospital in Denver, one of four transplant hospitals statewide, gave him that timeline after he completed the screening process there.

Then they promised to mail him a pager.

“We got the pager the day after he got the heart,” said his wife, Tina Telson, 38, smiling through damp eyes at the four-day turnaround.

The couple and their daughter, Danielle, 16, recently shared their story of that September day in 2006 to show how a donor’s death changes life for a sick person waiting on a list.

Earlier this month in Colorado, 1,765 people waited for an organ transplant — 38 of them for a heart, according to the United Network for Organ Sharing, which manages a national waiting list.

During a physical examination related to bronchitis when Telson was 15, his family doctor heard a heart murmur and referred him to a cardiologist.

That murmur turned out to be hypertrophic cardiomyopathy, a progressive condition that thickens the walls of the heart and eventually ruins the organ’s ability to contract and relax properly.

As a teenager, Telson felt fine and looked good.

“Because it happens gradually, I thought, ‘Well, I’m just getting older,’” Telson said of his mounting fatigue. “But the doctors told me I didn’t know how sick I was.”

When they spelled out in 2006 that he would need a heart transplant as soon as possible, it still struck the salesman as surreal.

“‘Is there not a Plan B?’ That’s exactly what I told him,” Telson said.

There wasn’t. There was only a Plan A. So Telson took the 11:30 p.m. notification call, drove with his wife and daughter from Longmont to Denver, and walked onto the hospital’s transplant floor just before 1 a.m. to be prepped for surgery.

At 9:30 a.m., he underwent the six-hour transplant. He woke up looking immediately better for it, Tina Telson said.

“The second I walked in after surgery, his lips were bright red,” she said. “I had not ever seen him with that much color in 16 years of knowing him.”

Doctors can transplant six organs: the heart, kidneys, liver, lungs, pancreas and small intestine.

“But a single donor can save up to eight people,” Donor Alliance spokeswoman Jennifer Moe said, referring to kidneys and lungs, which come in twos.

One tissue donor can help up to 100 people in need of skin, corneas, bone, tendon, ligaments and heart valves, she said.

The Denver-based Donor Alliance is one of 58 organizations designated by the U.S. Department of Health & Human Services to facilitate the donation and recovery of organs for those in need of transplants.

Jim Telson’s donor turned out to be a 17-year-old boy killed in an accident in Casper, Wyo.

After the boy’s death, authorities in Wyoming contacted Donor Alliance. The organization then registered the heart with UNOS to find a match in the database.

With his universal AB blood type and body size, Jim Telson’s name came up.

The University of Colorado Hospital took on the transplant and made the call to the Telsons.

Many people don’t register as organ donors because of myths, Moe said. Some, for instance, fear doctors might not work as hard to save a life if they know that person is an organ or tissue donor.

“Doctors involved in the patient’s care before death are not involved in the recovery or transplantation of organs and tissue after that death,” she said. “It’s two separate (medical) teams, so there’s no conflict of interest.”

As for religious objections, most world religions consider organ and tissue donation an act of charity, she added.

Jim Telson, whose daughter was diagnosed with the same heart condition within one week of her father’s transplant, views it that way and that act has gone a long way toward improving his quality of life.

Before the transplant, he needed an oxygen mask and had lost 50 pounds. He could barely walk a block and relied on a neighbor to mow his lawn.

“Now, it’s no problem,” he said. “I just zip through it.”

“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 through organ donation and one tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Tuesday, September 16, 2008

My MedSchedule free online service to manage medications

Create your own medication list with MyMedschedule.com

I, like most organ transplant recipients, take about 3 dozen anti-rejection and other pills a day to manage my lung transplant. Anything that helps us keep track of our medications is most welcome and MyMedSchedule, which was previously only available to hospitals is now free to the public.

At MyMedSchedule you can create your own medication chart for yourself, your friends and family members. You can print charts to put on the refrigerator, etc. and make a wallet-size list to keep with you at all times. They will even send you email and text reminders to take your pills if you wish.

The web site notes that your personal health information is protected by SSL encryption, and will not be redistributed or resold.

Visit the MyMedschedule web site.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Monday, September 15, 2008

At 25, woman has endured an organ transplant, kidney disease and much more

A picture of health
Valen Cover's resilience inspired an author to write a book about her


By BETH VRABEL
For the Daily Record/Sunday News, York, PA:

The smiling face on the cover of "My Favorite American" is the picture of youth and vitality.

Those who know Valen Cover also know how hard-won that seemingly easy smile is. At 25, Cover has endured an organ transplant, polycystic kidney disease (PKD), a seizure disorder, scoliosis, pancreatitis and a motorcycle accident.

But they also know that while illness has defined the Dover woman's life, it does not rule it. She continues to work fulltime, volunteer her time and champion for a cure for PKD. Perhaps most surprising, she does so with that wide smile.

Among Cover's fans is Dennis McCloskey, a Canadian writer who first interviewed her for a corporate newsletter he edits. "What impressed me most is her positive outlook on life and living," McCloskey said. "I knew a little about her. I thought if anybody had a right to be angry with the world, it's her."

McCloskey expanded the newsletter article into a magazine article, but he still couldn't get the York County girl who signed off her e-mails with a smiley face out of his mind. Already an author of eight books, McCloskey decided to pen Cover's biography. "I was pushed from the outside and pulled from the inside."

Cover said she's excited to share her story, but supplying the memories for McCloskey's research was sometimes painful.

"Reliving the pain that my parents went through was difficult," said Cover, whose health issues began with seizures as a young child and progressed to kidney failure in her late teens. "I feel like I'm making my parents proud. I'm actually just so excited that the whole world gets to know how great my parents are. I always tell my parents that I wasn't blessed with great health, but I was with great parents."

McCloskey agrees that while Cover is the book's star, her parents are the heroes. Pam and Bill Cover shared their meticulous records, from Valen's hospital stays to her middle-school poetry, with the author.

McCloskey has got an eye for detail, and locals will find many familiar backdrops to Cover's story: Three Mile Island, Masa and Charlie Brown restaurants, West York Middle School and more.

Much of Cover's story is shared through vignettes about those who have inspired her along the way: her parents, an elderly neighbor, a co-worker with cancer, physicians at Johns Hopkins. While some of these supporting players appear throughout "My Favorite American," others, such as a nurse who was able to take a blood sample on the first try despite having only one hand, flit momentarily in the slim book's pages.

"I just wanted people to know the whole person," McCloskey said. "If I just wrote about her when she was 19 and had the transplant, they wouldn't know about the whole person."

And McCloskey readily admits to have fallen whole-heartedly for the whole person. He said he and his wife, Kris McCloskey, think of Cover as a daughter, and they speak or e-mail daily.

While Cover said it's amazing to have a biography written about herself at such a young age, she sees it as another way to spread the word about PKD and organ transplants. On Aug. 13, Cover celebrated six years since her best friend's mother donated her kidney, allowing her to scrape her way back toward a normal life. Cover's own kidneys were the size of footballs by the time they were removed. Normal kidneys are the size of a fist.

Transplanted kidneys don't work forever; Cover knows her health is fragile, and she makes the most of her life. Her volunteer work includes speaking at Johns Hopkins University lectures about her transplant, traveling to conferences about PKD, and founding the South Central PA Chapter of the PKD Foundation. And she plays hard, too, often on a motorcycle.

"I'm actually healthier now that I've ever been," said Cover, who is planning a local Walk for PKD on Saturday. "I think I'm normal, whatever normal means."

TO BUY

"My Favorite American" by Dennis McCloskey is on order at Borders Books & Music in Springettsbury Township. Call 755-0800 for availability.

It is also for sale at amazon.com.

IF YOU GO

Support the South Central PA Chapter of the PKD Foundation and meet Valen Cover on Saturday at the Milton Hershey School. Cover will sign and sell copies of "My Favorite American" at the chapter's Walk for PKD.

Registration starts at 9 a.m., with the walk beginning at 10 a.m. For details, go to www.pkdcure.org and search for South Central PA Walk for PKD.

ABOUT PKD

Polycystic kidney disease is a genetic disease affecting 1 in 500 people that causes liquid-filled cysts to grow on the kidneys. It also affects other organs, such as the liver, spleen and pancreas. The disease is progressive, with some patients not having any symptoms until late in life, while others are diagnosed much earlier.

To find out more, go to pdcure.org.

TO HELP

Talus, a therapeutic salon, is helping to raise funds for the PKD Foundation. During September it will donate a portion of all its services to the PKD Foundation.

Valen Cover's biography is also available for purchase at Talus for $20.

To donate, make checks payable to PKD Foundation and mail to Talus at 1288 Green Springs Drive, York, PA 17402. Or drop it off at Talus' front desk.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Sunday, September 14, 2008

A short, full life reaches an end

From the Winnipeg Free Press, Canada:

Lung transplants didn't dull his zest

By: Meghan Hurley


CORY Connell spent so much time at the Children's Hospital, the nursing staff started putting him to work.

"They really loved him there. He was there for a long time, so they got to know him really well," his father, Rene Connell, said. "He was like a Tasmanian devil. He was everywhere, so they put him to work."

Connell -- the youngest Canadian and first Manitoban to have a double- lung transplant -- died Sunday, September 7th at the age of 34.

Connell's family remembered him Monday as a fighter who wouldn't give up despite two double-lung transplants.

"It was just amazing. He fell in love, got married and he got to see his nephews and niece born and his brother married, his other brother graduate from university and he never would have seen any of that," said his mother, Joan Wardekker. "My most fond memory was when we had his first transplant. For the first time in his life, he was able to play hockey with his brothers."

Connell's family flipped through old photos Monday night, remembering a man who worried about everyone but himself.

"He was a nucleus that kept a lot of people together because everyone was around him," his stepmother, Denise Connell, said. "He keeps everyone together."

Connell's lungs were severely damaged when he was five years old in a fire he accidentally started while playing with matches.

He spent a long time in the hospital and when he was released, his lungs were in such bad shape that he needed a transplant.

In 1991, Connell's family faced a major dilemma -- they had to come up with a way to pay for daily living expenses in Toronto while their son had his first transplant. That would cost about $40,000 a year for Connell's father, who took an unpaid leave from work to care for his son.

The Winnipeg Free Press established a trust fund named A Chance for Cory to help Connell's family pay for non-medical expenses. Manitobans who donated to the trust fund raised more than $80,000 for the family.

"It was scary, because you put your life on hold for two years," Cornell's father said. "The Free Press and people in Winnipeg made it easier to do that. This sure took a lot of worry and stress out of the situation."

n 1997, Connell had a second double-lung transplant after his body began to reject the new lungs from the first operation.

Shortly before his second operation, he got engaged to a woman he met while they were both selling vacuum cleaners door to door. They got married on Valentine's Day in 1997.

Instead of flowers, donations can be made to the Winnipeg Humane Society.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Saturday, September 13, 2008

Celebrities to highlight organ donation fundraiser

We frequently read about the costs transplant patients and their families are faced with and efforts to help them financially. I'm particularly pleased to learn about the Georgia Transplant Foundation and The James Redford Institute for Transplant Awareness as described in this article. Their very successful fund raising initiatives to provide financial support to transplant candidates, recipients, living donors and their families every year is commendable.

From the Ledger-Enquirer in Georgia.

By JUANITA COUSINS - Associated Press Writer

ATLANTA --
A celebrity-studded effort to raise awareness and funds for thousands of organ transplant candidates will converge with the work of volunteers and nonprofit groups in the fifth annual "Share the Beat" fundraiser Saturday evening in Atlanta.

"Organ donating is such a broad spectrum of gifts you can give people," said "Desperate Housewives" actor James Denton. "It is such a commonsense cause that affects all of us. It is something we all here easily can help with. You never know when it could be you on the receiving end or your family member or friend."

Denton will emcee the concert and live auction downtown at The Tabernacle to benefit the Georgia Transplant Foundation and The James Redford Institute for Transplant Awareness in Los Angeles.

Celebrities including Academy Award winner Robert Redford, Emmy Award winner Dana Delany, American Idol runner up Bo Bice, country music songwriter Rivers Rutherford, Grammy nominated artist Greg Barnhill and singer-songwriter Alexa Wilkinson are set to appear.

Robert Redford's son, James Redford, waited six months for a donor liver in the early 1990s, according to the JRI Web site. He later founded the institute to raise awareness about the need for organ and tissue donation.

"As with many recipients, when I went through my experience with transplant I felt compelled to give back. I felt the best way to accomplish this was to use my experience with film and put a face on the many donors and recipients that reside in our country, something that had not been done at the time," the younger Redford wrote in an e-mail.

In past years, Redford has teamed with transplant organizations in Los Angeles, Salt Lake City and other cities to hold his "Share the Beat" fundraiser. The group raised $167,000 last year in Omaha, Neb., where country singer Tim McGraw was the headliner, said spokeswoman Carmen Cruz.

This year Redford partnered with the Georgia Transplant Foundation in Atlanta to raise $250,000. The foundation's executive director, David Bakelman, said they hope to double that amount during Saturday's fundraiser.

"We felt it would be a great partnership," Bakelman said. "When JRI saw the infrastructure that we have, they thought we could have a great partnership going forward."

The Georgia foundation provides $2 million in financial support to transplant candidates, recipients, living donors and their families every year.

About 1,800 Georgians and 99,000 Americans are waiting for heart, lung, kidney, liver and pancreas transplants, Bakelman said.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Friday, September 12, 2008

Transplant dad swims English Channel

From the Warrington Guardian, UK:

By Miranda Newey

AN athlete who scooped medals in last month’s British Transplant Games swam the English Channel for the second time.

Determined Steve Deakin, aged 46 swam, the distance in 14 hours 15 minutes to raise awareness about the opportunities available to people who have undergone transplant operations.

The dad-of-three children and two step-children, of Ealing Road, Great Sankey, battled with difficult weather conditions during the swim on August 30.

Three of the six swimmers who took part – all of whom have had transplants – suffered from sea sickness in the choppy weather.

The civil servant, who has undergone two kidney transplants, said: “We wanted to show that there’s life after the transplant. We raised awareness through local papers.”

Steve is currently waiting to find out if he has qualified for next August’s World Transplant Games in Australia.

Last month he came away from Sheffield’s Transplant Games with five medals for swimming, canoeing and squash.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Thursday, September 11, 2008

In memory of 9/11 victims

My post today is to honor the memory of the victims of the horrendous terrorist attacks on America 7 years ago today, September 11th, 2001.

I can only imagine the terror of the people on the planes and in the buildings.

And we must not forget the bravery of the fire, police and other emergency and medical workers, many of whom gave their lives in an effort to save others. There is no greater human act than to lay down one's life to save a fellow human being.

My heart weeps for those whose lives were snuffed out that fateful day and I have deep sympathy for their survivors and the agony they continue to go through.

Do you remember where you were and what you were doing that day? It is as vivid in my mind now as it was then. I was at a car dealership getting an oil change. A salesman came running in shouting that the World Trade Center was under attack. I got in my car and drove to a nearby shopping center and went straight to the Sears store where crowds were gathered watching events unfold on the display TV's. I stayed there for hours, staring at the screens in disbelief.

There isn't a day that goes by when I don't think of 9/11 and the evil that lurks in the minds of those who wish to destroy our way of life. Merv.

Wednesday, September 10, 2008

VT Media Produces New Series on Organ and Tissue Donation and Transplants

Organ and Tissue Donation and Transplants.
Press Release:

Boca Raton, FL, September 09, 2008 --(PR.com)-- In order to raise public awareness as to the importance of Organ and Tissue Registration and Organ and Tissue Donation, the producers are putting together a series for global distribution.

According to information provided by “Gift Of Hope”, a non-profit donor network, “Nearly 100,000 people are waiting for Organ Transplants Nationally. Every 13 minutes someone is added to this list and an average of 18 people will die while waiting, and 1 in 20 Americans will require some type of Organ or Tissue transplant over their lifetimes”. “One donor can save, prolong life or assist as many as 50 people,” said producer Mike Rawlinson. The key is educating the public in a respectful and tasteful manner when broaching what can be uncomfortable subject matter. It is much more efficacious to propagate a living decision for an individual to become a donor, as opposed to approaching the deceased’s family during their time of grieving. One must see or speak with only one family whose loved one’s life was spared, in order to know that one person can truly make a difference.

According to the United Network of Organ Sharing, “as of 8/28/08 there were 99,501 waiting list candidates, 11,517 transplants and only 5,805 donors”. In the same light, Donate Life America states that “there has been a 10% increase in donor designations over the last 18 months bringing the total number of registered donors to nearly 70 million. Still only 35% of licensed drivers and ID card holders have committed themselves to donation by registering to be donors through their state registry or Motor Vehicle Departments, leaving the donor shortage as a leading public health crisis”.

About VT Media:

VT Media is a privately owned and operated television production company that is on the leading edge of documentary television industry. For more information go to our web site.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Tuesday, September 09, 2008

Aid Clarifies Church's Teaching on Brain Death

From CBCP News:

VATICAN, Sept. 5, 2008-- There has been no change in Church teaching regarding the concept of "brain death" as a true criterion for death, though the criterion has to be applied correctly, reminded a Vatican spokesman. Jesuit Father Federico Lombardi, director of the Vatican press office, affirmed this in a statement Tuesday, which responded to a front page L'Osservatore Romano article on the topic of brain death and its validity.

Father Lombardi called the article, by Italian historian and journalist Lucetta Scaraffia, an "interesting and weighty contribution." But, he clarified that "it cannot be considered as the position of the magisterium of the Church."

Scaraffia's article suggested that the concept of brain death is undergoing new scrutiny, brought about, among other things, by cases in which pregnant women who are declared dead by virtue of the brain death criterion, are connected to machines to keep blood circulating and oxygen flowing until the baby can be delivered.

Her article noted that this year marks the 40th anniversary of the publication of a Harvard Medical School report that recommended using "brain death" as the criterion for ascertaining that death has occurred.

"The 40th anniversary of the new definition of brain death seems to be the occasion to re-open the discussion both at the scientific level as well as in the heart of the Catholic Church," suggested Scaraffia.

Sound anthropology

Father Lombardi explained that the Holy See's position may be consulted in Pope John Paul II's address of Aug. 29, 2000, to participants in the 18th International Congress of the Transplantation Society.

In that address, the Polish Pontiff noted that the "neurological criterion" for ascertaining death "consists in establishing, according to clearly determined parameters commonly held by the international scientific community, the complete and irreversible cessation of all brain activity -- in the cerebrum, cerebellum and brain stem. This is then considered the sign that the individual organism has lost its integrative capacity."

The Jesuit recalled how the Pope stated that "it can be said that the criterion adopted in more recent times for ascertaining the fact of death, namely the complete and irreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology."

And the spokesman mentioned the consequences drawn by John Paul II: "[A] health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgment which moral teaching describes as 'moral certainty.'

"This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action. Only where such certainty exists, and where informed consent has already been given by the donor or the donor's legitimate representatives, is it morally right to initiate the technical procedures required for the removal of organs for transplant." (Zenit)

“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 through organ donation and enhance another 50 through cornea and tissue donation

Monday, September 08, 2008

New Jersey lung patients breathe easier

From The Star Ledger:

by Angela Stewart

New Jersey residents in need of a lung transplant no longer have to travel out of state, as doctors in Newark announced yesterday that two patients have received new lungs as part of the state's first approved transplant program.

The surgeries were carried out at Newark Beth Israel Medical Center, which had not performed a lung transplant since 1997, when such operations were authorized by state officials on a case-by-case basis. After receiving permission from the state in 2006 to start a formal transplant program, Beth Israel recruited doctors from two of the nation's leading programs -- the University of Pittsburgh Medical Center and the Mayo Clinic -- to lead the effort.

"New Jersey needs a lung transplant program," said Lawrence McBride, the program's surgical director, formerly of the Mayo Clinic. "It's the 10th most populated state in the country and it didn't have one."

Last year, 52 lungs from New Jersey donors were transported out of state because no formal program existed, McBride said. Doctors say those organs now will be offered first to state residents who use the Beth Israel transplant program.

The first operations, overseen by a six-member team, were performed last week on Charles McFarlin, 49, of Irvington and Craig Lawton, 54, of Toms River. As the two men continued recuperating yesterday in adjacent hospital rooms, they described being unable to even walk across the room before receiving their new lungs.

"Taking a shower, putting on socks, brushing your teeth, when you can't breathe, they're very taxing," said McFarlin, an executive with the Day Care Council of New York.

Lawton, who delivered auto parts for a living, said he feels so good that he is looking forward to picking up his guitar again and rejoining a blues band.

"All I could do was barely breathe," he said. "Everything's better already."

Both men were on oxygen around-the-clock before they were placed on the national transplant waiting list in mid-August. McFarlin underwent surgery Aug. 25, Lawton a day later.

McFarlin, who had a double lung transplant, was suffering from sarcoidosis, a disease characterized by the growth of tiny clumps of inflammatory cells in different areas of the body. Sarcoidosis can affect any organ, and it had made McFarlin's lungs so weak that he could hardly make it to work.

"It had caused a lot of scarring in his lungs since he was a small boy. He was getting weaker and weaker, losing weight and getting more short of breath. He was dying," explained Sean Studer, medical director of Beth Israel's program, who left the transplant program at Pittsburgh to come to Newark.

Lawton had severe emphysema, or chronic obstructive pulmonary disease, a progressive lung disease that results in shortness of breath and reduces one's capacity for physical activity. The disease, which is heavily linked to smoking, is caused by damage to the small air sacs and small airways in the lungs.

"My quality of life was terrible," said Lawton, who received a right lung at the hospital, which is affiliated with St. Barnabas Health Care System.

As of last Friday, 2,126 Americans were awaiting lung transplants, according to the United Network for Organ Sharing, the nonprofit organization that matches organ donors and recipients. Other than the two men who received transplants at Beth Israel, no other New Jersey residents were on the list, UNOS officials said.

McFarlin and Lawton will be required to take medication for the rest of their lives to lessen the chances that their bodies will reject their new lungs. Doctors will be closely monitoring them following their release, as lung transplant recipients have a high risk of both rejection and infection.

"Unlike organs transplanted into the body, the lungs have to be exposed to the environment every day through breathing," Studer said.

The five-year survival rate for lung transplant patients is about 55 percent, according to Studer, but both men said they are looking to the future with nothing but optimism.

"I never let these things determine my outlook," McFarlin said. "There's no guarantees in life, but I think we're both doing very well."

“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 through organ donation and enhance another 50 through cornea and tissue donation

Sunday, September 07, 2008

Britain squanders pioneer work on organ transplants

Scientists have been exploring the use of animal organs, mainly from pigs, as a way of ending organ shortages. The procedure is called xenografts or xenotransplantation. For an overview and discussion of the pros and cons see the Wikipedia article.

From Times Online:

By Robert Winston

A new patient is put on a waiting list for a transplant somewhere in the developed world every 15 minutes. Only a few of these people will get a transplant, the rest will die with increasing incapacity. Worse still, far more patients needing transplantation will not even get on a waiting list.

People waiting with crippling heart disease cannot walk more than a few paces, or sleep properly because of severe breathlessness. Patients with kidney and liver failure are slow-poisoned, alleviated to some extent with artificial blood-cleaning machines. Most of them have a hugely restricted life.

People needing a new heart or liver are waiting for someone else to die - usually a violent death in a traffic accident. So my team at Hammersmith hospital in west London has been trying to modify pigs so their organs might save the lives of humans.

Why consider animal organs at all? Well, human-made devices such as mechanical hearts never work as well as biologically produced organs. And although huge publicity has been given to the idea of growing organs - culturing hearts or livers possibly from stem cells - this technology is still very primitive and is very unlikely to come to fruition in the next 20 or 30 years, if ever.

Pigs’ organs are the right size for human transplantation, and they work similarly to human organs. Of course this raises a moral problem, but it is much more ethical to use a pig to save a human life than to use it for relatively unnecessary meat eating.

And pigs for transplantation are kept in scrupulously humane circumstances and killed under proper anaesthesia.

The key challenge is introducing the right genes into pigs. These genes do not change the pig - it feels and looks entirely normal - but the genes change proteins on the surface of their organs so they will not be recognised as “foreign” by the human immune system after transplantation. Patients will still need to take drugs to prevent rejection, but the graft should be tolerated.

One problem is that it is hard to get new genes into large animals. The technology works in mice, but is still inefficient and requires hundreds of mouse embryos to get the occasional successful “transgenic” - an animal carrying the genes needed. Obtaining embryos in large animals is excessively difficult and sometimes the surgery may not be as humane.

My colleague Carol Readhead, a scientist from California, and I hit on a drunken idea over a bottle of good burgundy a few years ago. Pigs’ embryos are difficult to harvest, but pigs produce copious semen. This is not something you may want to know over breakfast, but the average male pig produces a large cupful with each ejaculation - carrying perhaps 1 billion sperm.

Our drunken idea was to introduce the genes we needed into the sperm. Whenever the pig mated, the egg would fertilise naturally and any embryo would carry the genes. A simple injection of our gene product into the testicle of a piglet is all that is needed. As the male pig grows, it will continue to produce many modified sperm for years. And this single injection, under local or general anaesthetic, is painless.

One problem with animal organ transplants that has raised public concern is that animals such as pigs harbour viruses that could infect any human organ recipient. Some of these viruses might cause terrible diseases such as cancer. And another possibility is that viruses from pigs, once established in humans, might go on to infect many members of the population.

However, there are likely to be several strategies to minimise the risk. First, the evidence suggesting it may be possible to breed virus-free pigs. Similarly vaccines might be developed that could prevent any viruses taking hold in humans. And we also have evidence that pig viruses have not necessarily caused problems when pig tissues have been transplanted into other species. Pig valves are widely used in heart surgery without ill effects.

This technology is important for human medicine. As a bonus, it carries huge commercial opportunities if we develop and export it around the world. However, it has been difficult to pursue the research in the UK. Getting a Home Office licence to experiment with just six pigs took nearly two years with successive delays, even though the pigs do not suffer.

And having got pigs producing transgenic sperm, we were informed we could not mate them because of some Department for Environment, Food and Rural Affairs and European Union regulations. We are not even permitted to do postmortems on the pigs, so we cannot prove we have been successful. Years of work, and investment, have been mostly wasted. And we have had to say a sad goodbye to our committed scientific team.

In the present commercial climate it is difficult to get further UK funding, so the experiment will move to the States. Our US friends will benefit from our technology and yet another British innovation will be jeopardised; the income we might have generated for Britain will be lost. If we wish to ensure that we are in the forefront to alleviate suffering, we must avoid needless bureaucracy when developing important technological advances.

Lord Winston is a leading fertility consultant and broadcaster.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Friday, September 05, 2008

Mayo Clinic develops improved tool to rank sickest patients waiting for liver transplants

ROCHESTER, Minn. -- Mayo Clinic researchers have developed an improved statistical model that could help ensure that the sickest patients receive liver transplants first.

Researchers found that including serum sodium concentration in the statistical model now used could reduce by 7 percent the number of patients (as many as 50 people) who die each year while waiting for a liver transplant. Serum sodium levels can be measured with a blood test.

The study will be published in the Sept. 4, 2008, issue of the New England Journal of Medicine.

"The subset of patients with the lowest sodium blood levels is not served well by the current system," says W. Ray Kim, M.D., liver transplant physician at Mayo Clinic and lead researcher on the study. Low serum sodium occurs in patients with advanced liver disease, who frequently have a large amount of ascites (fluid in abdomen), a serious complication of liver cirrhosis.

In the United States, the United Network for Organ Sharing (UNOS), a nonprofit, scientific and educational organization, administers the distribution of organs from deceased donors to patients waiting for transplants.

In 2001, Mayo Clinic researchers developed the formula used to rank patients waiting for livers from deceased donors. Called the Model for End-Stage Liver Disease (MELD), it was adopted by UNOS in 2002. The highest MELD scores indicate the sickest patients, who are placed at the top of the transplant waiting list.

The MELD score is based on three standard laboratory tests:

* Total serum bilirubin concentration, indicated by jaundice
* International normalized ratio for the prothrombin time, which measures the blood's ability to clot
* Serum creatinine concentration, an indicator of renal (kidney) function

"The addition of sodium to MELD would be a relatively modest improvement," says Dr. Kim. "Since low serum sodium does not affect the majority of patients, we didn't pick it up in our original work. However, we have discovered that in those affected, low sodium has a substantial impact on mortality. This impact is particularly large in patients with low MELD, who would be placed low on the waiting list under the current system."

How the study was done. In this observational study, researchers analyzed patient data collected upon UNOS registration for liver transplantation. In 2005, there were 6,769 patients placed on the list. Of those, 422 died and 1,781 underwent liver transplant within 90 days. Based on these data, researchers created a new statistical model that incorporates serum sodium and MELD.

The new model was verified by using waiting-patient data from 2006, when 477 patients died within three months of placement on the waiting list. "By factoring in sodium, researchers predicted that about 7 percent of deaths of waiting patients would have had considerably higher priority for transplant, and it may have prevented their deaths," says Dr. Kim.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Wednesday, September 03, 2008

5 years after transplant, 12-year-old is golden

Every time I read a story about how an organ transplant has transformed a life it warms my heart. This is a wonderful example.

Abby Uranga of Scio Township wears the gold medal she won in the 25-meter freestyle swim for girls 12 to 14 years old at the U.S. Transplant Games in July in PIttsburgh. With her are her parents, Lorie and John, and little brother Nick, 7. Photo: Leisa Thompson

From the Ann Arbor News, Michigan:
By John Mulcahy

If gold medals were awarded for beautiful smiles, Abby Uranga would probably win one every day.

Abby, 12, of Scio Township, has a lot to smile about. She is healthy, has a loving family, and is able to do many things she loves, such as swimming, riding horses at camp and spending time with friends.

She also has a gold medal, but not for smiling. Abby won her medal this summer at the U.S. Transplant Games in Pittsburgh in the 25-meter free-style swim for 12- to 14-year-old girls.

For her to accomplish such a feat seemed nearly impossible five years ago.

She is afflicted with a genetic condition called Alpha-1 antitrypsin deficiency, which caused her liver to make insufficient amounts of a necessary protein and threatened her life. She went on a waiting list and received a new liver in August 2003 at the University of Michigan Medical Center, when she was 7 years old.

That was followed by months of recuperation and special care when she returned to St. Francis of Assisi elementary school. Teachers had to alert Abby's parents whenever another student got sick to help protect her from infection.

But as she recovered, Abby was eager to get active. She joined a school soccer team during her second year back at school and also took gymnastic classes.

This summer, Abbey attended Camp Michitanki, designed for transplant recipients 7 to 15 years old. Created in 2003 by several transplant families, the U-M Transplant Center, several pharmaceutical companies, volunteers and the YMCA, the camp in Oscoda offers activities such as swimming, canoeing and horseback riding. The camp provides medical supervision to assure participants take their medications and have other medical needs met.

"It's just fun to be with kids who are going through the same things you are going through at this point," Abby said of the camp.

There have been setbacks. Abby spent a total of four weeks in the hospital two years ago, and she must constantly be cautious of infections. But overall her life has been good.

"I haven't been in the hospital in two years, and I've been really healthy," Abby said.
Abby's parents, John and Lorie Uranga, who also have a 7-year-old son, Nick, said Abby's experience has taught them a lesson about life.

"Something that started back then is learning to enjoy the moments of life," Lorie Uranga said. "You just don't take it for granted any more."

One of those moments was at the recent Transplant Games.

"To see (Abby's) smile when she came up out of the water and knew she won, that was pretty special," John Uranga said.

It was special to Abby too. "I love swimming and was excited to do something," she said.

The games are sponsored by the National Kidney Foundation for transplant recipients. This year, more than 1,300 athletes competed in 12 sports.

The Urangas think it's important to share their experience and Abby's story to encourage more people to donate organs for transplant.

"What we can do is talk about how we were given the gift of life," Lorie Uranga said. "It is important for us to tell the story of what a great kid (Abby) is."

About 3,000 people in Michigan are waiting for organ transplants of all types, according to Gift of Life Michigan, the state's non-profit organ and tissue donation program.

In 2007, there were 862 organ transplants in Michigan. Nationally, almost 100,000 people are waiting for organ transplants.

Abby and her family are just beginning to write to her donor family - whose identity they do not know - expressing their desire to meet family members if they so desire. The letters will be submitted to Gift of Life Michigan to be forwarded to the donor family.

As she looks ahead, Abby knows that the most important things for her health are to continue taking the medications that keep her body from rejecting her liver, to eat healthy food, get exercise and live a healthy lifestyle. She is entering sixth grade at St. Francis of Assisi school this year and has been looking forward to it.

"I'm excited to go back to school and see all my old friends," she said.

“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 through organ donation and enhance another 50 through cornea and tissue donation

Tuesday, September 02, 2008

Double-lung transplant survivor now a champion athlete

Celebrating more than a win
Canadian Race-walker a force to be reckoned with

By Erin McPhee North Shore News

Margaret Benson was lying on a hospital bed in an intensive care unit when she made her decision.

Having just survived a double lung transplant -- after a childhood diagnosis with cystic fibrosis -- the North Vancouver resident felt she had been given a second chance.

Not only that, one of her physiotherapists gave her a Vancouver Sun Run bib.

"I made the decision then that the way to give back to my donor and donor family was to begin participating in running activities or in some sort of athletic event to really prove that organ donation works," she says.

Close to 10 years later, Benson, 49, has made a name for herself as a champion athlete. While she continues to add to her personal medal count, what makes her stand out among her peers, is her continued celebration of the gift of life.

Benson has just returned from the Canadian Transplant Games held in Windsor, Ont., Aug. 4-9, with a world record, seven medals and she took top honours after being named athlete of the games.

She was among more than 400 transplant recipients from across the country, ranging in age from five to 76, who gathered to compete in Olympic-style events, all the while raising awareness about organ and tissue donation and celebrating their second chance at life.

"Most of my events that I achieve medals in are running races and 10 years ago I was on full-time oxygen," she says. "For me, it's just amazing that I can run and put one foot in front of the other, but the fact that I'm able to run and win medals, it's pretty extraordinary."

When Benson was diagnosed with cystic fibrosis at 14, the life expectancy was 15, she says.

"It was a death sentence basically," she says.

Approaching her 50th birthday next year means she has a lot to be happy about.

After Benson received her transplant in 1999, something she calls "the greatest gift I could ever receive," she maintained her goal to lead an active life.

Having been somewhat athletic prior to her transplant, following her recovery, she ramped up her training.

"When you can't breathe it's very difficult to do any kind of really strenuous activities," she says of her former self.

With her newfound lung capacity, Benson initially got involved with dragon boating, later turning her focus to race-walking, which continues to be her forte. Opting to participate in, of course, The Vancouver Sun Run, and other local events, Benson has also become an avid contender and a force to be reckoned with in the Canadian Transplant Games as well as the World Transplant Games.

"These are the Olympics of the transplant world," she says. "The difference is that all the athletes have had life-saving and life-changing organ transplants. Most of us were very near death. Some of us were within hours of dying and because someone signed their organ donor card or a family knew what their loved one's wishes were, our lives were saved."

Being part of these events, is an incredibly emotional experience, she says.

"All of us were waiting to die," she says. "Some of us wrote letters to our loved ones saying goodbye. . . . When you watch these people at these games, you realize how special life is and what the gift of life is all about. If we win a medal, that's great, but it's all about just living life, giving back and feeling so fortunate just to be alive."

To read more of this article 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 through organ donation and enhance another 50 through cornea and tissue donation