Saturday, February 28, 2009

Liver patient dies - lack of insurance cited

This article is a further discussion on the concept of Universal Health Care for the United States. If you have an opinion please leave your comments at the end of this post.

Flawed system leaves permanent mark

By Kelsey Duckett INDEPENDENT, Minnesota

The health care industry has failed yet another innocent, hard-working American. The loop-holes, fine-print, lies and scams of insurance companies and the health care industry need to be brought to light and changed now.

On the list of world health care systems, the United States ranks 37th out of 191 countries. Cuba is quickly gaining on he U.S. in the 39th spot, only two spots above Cuba - who offers health care to absolutely everyone.

The Centers for Disease Control and Prevention said that 54.5 million people were uninsured for at least part of 2008.

One argument I hear all too often against Universal Health Care is Americans are happy with their health care why change it? Well let's be honest, most Americans may be more than satisfied with their health care, but not everyone is allowed to become a patient.

Since we are on the subject of Universal Health Care, I just want to make clear to the readers that the rest of the Western world provides health insurance to everyone. These same citizens do not face co-pays, monthly premiums, pre-existing conditions or deductibles.

It has been stated by the Institute of Medicine that 18,000 people die every year in the United States because they don't have insurance.

18,000 people die ONLY because they are uninsured and for me, and fellow La Crescent High School Alumni, it has finally hit close to home. Recently Michael Wieser, 27, of La Crescent, a son, brother, uncle, cousin, classmate, athlete and model has died as a result of being uninsured.

In fact, Wieser played Division II college football at North Dakota State University, where he caught one of the most memorable passes in school history in 2003 to lift the Bison over the University of Montana 25-24 - a feat that arguably helped push NDSU into the Division I ranks. Wieser was also a two-time All-American for the Bison.

He was a three-sport standout athlete and student at La Crescent High School. He was the brother to 11 adopted siblings, the son of two loving parents and the friend of many from Minnesota to North Dakota to Nevada - where he was living and working as an entertainer.

Wieser was diagnosed with Wilson's Disease while in college at NDSU in 2001. Wilson's Disease is a genetic disorder that is fatal unless detected and treated before serious illness from copper poisoning develops. Wilson's Disease affects approximately one in 30,000 people worldwide. The genetic defect causes excessive copper accumulation in the liver or brain.

Wieser was uninsured, he was able to get insurance, however he could not afford the insurance, which would have not covered his fight with Wilson's Disease because it was a "pre-existing" condition. Wieser went to the hospital in Las Vegas on Tuesday for what he thought was a simple case of a cold. It turned out the disease had struck again and he would need a liver transplant in order to live.

Wieser was forced to cut many corners in order to manage his disease, and when it got worse, Nevada could not provide him care because it lost its donor program last year.

According to MayoClinic.com, the number of people waiting for a new liver is much larger than the number of available livers, so liver transplant is reserved for people who are critically ill. Some people will receive a liver right away, while others spend many months waiting for a liver transplant. About 6,000 liver transplant operations are performed in the United States each year, according to the Organ Procurement and Transplant Network.

If you are faced with not having insurance certain states will not even consider putting you on the transplant list. You are then forced to find financial support or pay out of pocket and a liver transplant procedure costs between $100,000 to $400,000 depending on time waiting in the hospital ICU and the extent of the liver disease before transplantation.

According to EmoryHealthcare.org, costs can also vary greatly depending on a number of factors including the patients health at baseline, rate of recovery, any pre-existing conditions and/or potential complications after surgery. The severity of rejection and the number of medications or procedures that are needed after surgery can also affect the hospital costs. The cost of medications after the patient goes home from the hospital can range from $700 to $1,000 a month or more.

As of 7:16 a.m. Thursday there were 100,844 candidates on an organ waiting list and 15,722 are waiting for a liver.

Wieser was one of those 15,722 people that were in need of a liver transplant - by the time he had found a way around the cost and found a hospital (Mayo Clinic in Rochester) that would take him and place him on the transplant list - it was too late. Wieser died on Wednesday, Feb. 25 at 7:33 p.m.

No price should be placed upon any human being or any person ever.

A life should NEVER be wasted simply because of money, health insurance or simply because we have holes in our health care system that people fall through daily.

A person should NEVER die when he can be saved with a procedure. A person should NEVER die when there is a cure or he can be saved.

You may not agree with me or with Universal Health Care, but when your son or daughter graduates college and has to find and pay for their health insurance and they either are denied, have a pre-existing condition, or the cost is too much and you find your family in a situation similar to the Wieser family you will understand.

Trust me, when it is your son or daughter, your mother or father, or your best friend on the operating table you will not stand by and let them die simply because of insurance, money, or fine-print.

Enough is 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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Friday, February 27, 2009

Artificial lung saves man's life at Toronto General Hospital

I met Ken Thompson last June at the Lung Transplant Golf Tournament. The event is held each year to raise funds for lung transplant research at Toronto General Hospital (June 4th this year) and Ken was introduced as a lung recipient who was kept alive by the Novalung "bridge to transplant" until a donor lung was found for him. Here he proudly poses with other lung transplants at the June 5, 2008 tournament.

Ken Thompson (seated) poses with other lung transplant recipients:
Front: Al Jack, Merv Sheppard, Kellie Cooper, Judy Penner, Kim Cassar, Ken Thompson, Bob Webster
Back: Ralf Quast, Grant Hagerty, Avril Koyanagi


Have an opinion on this article? Click comments at the end of this post.

By Kurtis Elsner The Alliston Herald

Ken Thompson sits in a recliner chair in the living room of his Alliston home. He is covered with a blanket, and has difficulty moving. At times he has difficulty breathing. Surrounded by family, he listens closely as they recount his story. It's one he barely remembers, but one that doctors have called a miracle.

"They called him their miracle man, because they really didn't think he'd pull through," said Ken's wife, Ann.

It started in 2005, when Thompson went to his doctor because he had trouble breathing.

"I couldn't breath properly," he said. "I needed more air."

That year he was diagnosed with pulmonary fibrosis, a disease that destroys the lungs' ability to transfer oxygen to the blood stream. Since his diagnosis, Thompson and his family have been on an emotional rollercoaster ride that included a state-of-the-art piece of technology that kept him alive just long enough for a lung transplant.

"There were three times that (doctors) said, 'he won't make it, say your goodbyes'," said his 18-year-old daughter, Kayla.

After Thompson was diagnosed, he was put on oxygen to help him breath. He was able to live at home, but had to be hooked up to oxygen tanks at night.

In 2006, his condition worsened. By December of that year he could no longer work at his job at Borden Metals. Doctors increased his medication, and his family starting inquiring about getting Thompson on a list for a lung transplant, said Ann.

While family members were looking into the transplant list, Thompson's condition deteriorated and by late April of 2007 his family rushed him to Stevenson Memorial Hospital. A day later, doctors there sent him to Royal Victoria Hospital in Barrie. Kayla said she was warned he might not survive the trip. The family braced for the worst.

Thompson did make it to Barrie, but after a weeklong stay his condition deteriorated further and he was sent to Toronto General Hospital.

After a series of rigorous tests, Thompson was identified as a candidate for a transplant and was added to the long list of people awaiting donors May 17.

With Thompson's lungs failing fast, and the outlook for a donor unknown, on May 24 Thompson was put on a new technology known as a Novalung.

The German-made machine is hooked up to both of the patient's legs. Blood is pumped from one leg and into a machine that removes the carbon dioxide, and re-oxygenates the blood, before it goes back into the body through the other leg. The machine essentially temporarily replaces the patient's lungs when they fail.

Late on May 29, doctors said Thompson could only stay on the Novalung for another 12 hours, because of tissue damage to his legs, Ann said. Doctors would then have to disconnect it and let nature take its course. All the Thompson family and doctors could do was wait and see if a donor became available.

It was an excruciating wait, and one that's outcome was dependent on the tough decision of other families, said Ann.

"(The donor) has to be someone on life support," said Ann. "It's up to that family to say they're going to pull the plug."

Thompson's team of doctors cast a large net looking for lungs. At first the search was centered on Toronto, but eventually it opened up to across North America, Ann said.

Then, with little time remaining, the Thompsons received the news they had been waiting for - lungs were available, and they were from a patient in Toronto. Ann was asleep at the time, and she was woken up by two of Ken's sisters.

"They said, 'he has won the lottery. He's got lungs, he's got lungs coming," recalls Ann.

Preparation for the transplant began immediately. After what was about a six-hour surgery, Thompson had a new set of lungs. By the time doctors were able to take Thompson off of the Novalung, he had gone over the 12-hour threshold by 15 minutes. Doctors tried to repair the tissue damage from the machine, but Thompson has large holes and scars in his thighs, where the machine was hooked up.

Dr. Shaf Keshavjee is the director of the Toronto Lung Transplant Program, and he said the Novalung buys more time for people waiting for lung transplants. Unlike other artificial lungs, the Novalung does not require an artificial pump, and lets the patient's heart pump the blood. This means less damage to the body and fewer complications.

"Twenty per cent of the people that are listed for a lung transplant will die before they have an organ available for them," said Keshavjee. "So, for the few people that are candidates for this therapy, now you can put them on the Novalung and buy them some time until an organ becomes available."

For Thompson, his timing was lucky. He was one of the first people in Canada to go on the Novalung. Even now, two years later, the technology is rarely used in patients.

Keshavjee said Toronto General does about 100 lung transplants a year, and of those cases only about three or four go on the Novalung.

While the transplant saved his life, the whole ordeal continues to be a difficult one for Thompson and his family. He remembers little of his time in hospital, and his memory of things before the surgery has been hampered as well. He had a difficult time remembering Alliston when he returned, and didn't remember his house either.

"And I've lived in Alliston all my life too - 56 years," he said.

Since the transplant, there has been a series of medical hurdles Thompson has had to jump. He has had several medical complications, many of which Ann said likely stem from the cocktail of drugs Thompson has to take daily.

For example, every Monday morning he wakes up and takes 27 pills, consisting of both drugs and vitamins. He'll take over a dozen more before bed.

He has suffered seizures and fallen down. He had a throat stent because of tissue damage caused by intubation. He has also had difficulty walking, because of the damage to his legs caused when he was hooked up to the Novalung.

Despite the ups and downs, Thompson said he has received excellent support from his family and friends. His wife, Ann, has refused to give up, or let Thompson give up.

"It's been one hell of a rollercoaster ride, but if we ever had to do it again, we certainly would," she said.

Thompson has been improving, but he and his family have learned that progress is made with small steps. He has a physiotherapist come in to help him walk again, and Ann said she is determined to have him walking again by the spring. He had made some strides, and last summer was able to achieve one of his goals. He had regained some of his motor abilities, and was able to mow his lawn with a riding mower, a time he looks back on fondly and proudly.

But Thompson was admitted to hospital again this January, and after a month-long stay, he has had to start over once again.

The father of two's biggest goal is learning to walk, and thankfully he has a major motivation to accomplish it - his daughters, Kayla and Kendal.

"My dad and I are best friends. He's my life," said Kayla. "He's my miracle."

Kayla still lives at home, and she and her fiancé, Max Kueper, help with Thompson's recovery. While the help and support from his family is greatly appreciated, his daughter's engagement especially has given Thompson all the motivation he needs.

"I have to walk my daughter down the aisle," he said.

Merv's note: For more info and a video about the Novalung device see my recent post about 16-year-old Katie Sutherland who's life was also saved by the Novalung

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Thursday, February 26, 2009

$151.1 million ($97.8 million U.S.) to reform organ donation in Australia

Prime Minister Kevin RuddPrime Minister Kevin Rudd launched Organ Donation Awareness week in Australia and announced a huge investment to improve the organ and tissue donation system in an effort to save lives. I am very impressed with the Prime Minister's leadership in this initiative, which indicates how important he believes this is to Australia. Plans to establish an independent national authority and the appointment of an advisory council that includes a broad spectrum of medical and legal professionals confirm this. His remarks follow.

Australia.To

I acknowledge the First Australians on whose land we meet and whose culture we celebrate as one of the oldest continuing cultures in human history.

If you have heard the stories of those who have suffered from chronic diseases, and been given the gift of life through a transplant –

Or if you have heard the stories of the families for whom a donor organ never arrived in time –

You can be in no doubt this is a cause that really matters.

It’s a cause worth fighting for.

There is no question that Australia delivers excellent clinical outcomes for transplant patients.

But our donor rates are too low.

And the Australian Government is determined to change that.

So that instead of lagging behind other nations, Australia can be a leader in organ and tissue donation and transplantation.

If you have any questions about how important this is, just look into the eyes of my 2 year old friend who is here today, Cordelia Whatman, the thankful recipient of a liver transplant.

Or her 4 year old sister, Octavia, who is nearly big enough and old enough to be made an ambassador for organ donor awareness.

Or speak to 8 year old Taleaha and 4 year old Rory here, whose mum Kylie is waiting for a double lung transplant.

Australia has a transplant waiting list of around 1,800 people.

That is 1,800 Cordelias and Kylies.

1,800 Australians for whom a transplant may be the difference between a normal, healthy life and debilitating chronic illness.

We’re here today for them – and for thousands more Australians, in the years ahead, whose lives will be changed by an organ or tissue transplant.

In July last year, I said national leadership to lift organ donation rates was long overdue.

I said it was time to end the blame game between different levels of government and different parts of the health system.

I said we needed to take action, and focus our efforts in the places where we can actually get results.

That is why the Government is investing an unprecedented $151.1 million over the next four years to reform the national organ and tissue donation system and save lives.

The plan was endorsed by all State and Territory governments on July 3 last year at the Council of Australian Governments meeting.

That plan centres on taking action where it matters most – in our hospitals.

The plan aims to ensure that:

  • potential donors are properly identified at hospitals across the country;

  • every family of a potential donor will be asked about organ donation;

  • a dedicated specialist will work with the potential donor and their family to provide support through what is often a very, very difficult process;

  • hospital staff will be able to focus on donor care knowing that the hospital has
  • a separate budget to cover organ and tissue donation;

  • families receive the support they need at the time of organ donation and afterwards; and

  • there will be an equitable and safe process for managing transplant waiting lists and allocating organs once they become available.

There are five components to the national plan I announced in July last year.

The first component is $46 million to introduce a coordinated, consistent approach under the leadership of a new, independent national authority—the Australian Organ and Tissue Donation and Transplantation Authority.

The legislation for the new Authority went through Parliament last September, and it is now up and running.

It is led by Karen Murphy, an experienced CEO with a proven track record of successfully managing change in large organisations and working collaboratively across both the public and private sectors.

Under her leadership, the Authority is working quickly to build its capacity and implement this ambitious reform agenda.

Our plan also allocates $67 million to employ trained medical specialists and other staff dedicated to organ donation.

They will work closely with emergency department and intensive care unit teams in selected public and private hospitals across Australia.

The third element is $17 million in new funding for hospitals to meet additional staffing, bed and infrastructure costs associated with organ donation.

The fourth component is $13 million towards raising community awareness and building public confidence in Australia’s donation for a transplantation system.

The fifth component is funding of $2 million for counsellors to support donor families.

This is a comprehensive plan.

It tackles the point at which our organ donor system is currently failing - where we need dedicated staff in emergency wards and intensive care units, trained to help families through the difficult circumstances they confront just at the time when getting consent matters.

It was developed on the basis of evaluating international experience – evidence that highlighted the need for national leadership, and the need for dedicated specialist staff.

Today I announce the next step in implementing the national plan.

For the Authority’s efforts to be as successful as possible, it needs to get the best advice – both from within the medical community and from a wide range of community voices.

We know that we need to engage with the wider community so that more Australians understand just what a gift of life organ donation can be.
That is why we will establish an Advisory Council - to provide ongoing advice and input to the Authority.

The Advisory Council will consist of members selected on the basis of substantial experience or knowledge in at least one of the following fields:

  • organ or tissue donation and transplantation;

  • public administration;

  • business;

  • management;

  • finance and

  • health consumer issues.

I’m pleased today to announce that Sam Chisholm will chair the Advisory Council.

Sam Chisholm is one of the most experienced hands in the Australian business community – most famously as the Chief Executive and Managing Director who led the Nine Network through the many years when it dominated Australian television ratings.

If anybody knows how to get Australians to watch and listen, Sam does.

Sam is also the recipient of a double lung transplant in 2003.

He’s also been a director of the Victor Chang Cardiac Research Institute.

So he will bring to this role the same grit and passion he’s famously demonstrated throughout his professional life.

Sam will be supported by the following members of the Advisory Council:

  • Professor John Horvath AO, the Chief Medical Officer

  • Dr David Boadle, Tasmania’s Deputy Chief Health Officer

  • Prof Don Chalmers, Dean of the Law Faculty at the University of Tasmania with expertise in health law and ethics

  • Ms Anne Cahill Lambert AM, a tireless advocate in this area waiting herself for a double lung transplant; also a former CEO of the Royal Australian College of Medical Administrators and former CEO of the Women’s Hospitals Australasia and the Children’s Hospitals Australasia

  • Professor Geoff Dobb, head of the Royal Perth Hospital’s Department of Intensive Care with expertise in brain death and organ donation

  • David Koch – Kochie has of course done a huge amount to promote donor awareness on the Sunrise program and brings business and financial expertise

  • Professor Jeremy Chapman OAM – one of Australia’s most highly experienced transplant specialists and a clinical professor at the University of Sydney

  • Mrs Rachel Martin, donor family member

  • Dr Marisa Herson, head of Victoria’s Donor Tissue Bank

  • Dr Anthony Cross, emergency physician and intensivist at the Box Hill Hospital

  • Dr Gerry O’Callaghan – Senior Consultant, Intensive and Critical Care, Flinders Medical Centre

  • Ms Amanda Rischbeith – National President of the Australian College of Critical Care Nurses

  • Dr Dianne Stephens OAM – Director of Intensive Care at the Royal Darwin Hospital

  • Professor Russell Strong AC – Medical Director, Queenslanders Donate


These members give the Council a tremendous depth of skill expertise ranging across critical care, transplantation, the medical and nursing professions, donor families, transplant recipients and those on the waiting list.

I want to thank each Council member for taking on this responsibility.

Your advice will be important to making the national plan successful.

Progress on the national plan is also advancing in other areas as the Authority begins taking the practical steps that will help get the results to which we are committed.

Health Ministers have agreed to the implementation of national ‘clinical triggers’ across all public and private hospital Emergency Departments and Intensive Care Units.

These clinical triggers will help clinicians on the ground to rapidly and accurately identify potential donors.

Consultations with the medical professions are now underway.

The Authority is also working to implement the new National Paired Kidney Exchange Program.

This will help link potential donors to recipients across the country, where a family member or friend who is willing to donate is not compatible.

The Organ Donor Awareness Week is an excellent opportunity to raise awareness and get the message about Cordelia, Kylie and thousands of other Australians.

So I am pleased to launch this week’s efforts.

And I am particularly pleased to be launching the Terry Connolly ORGANised Walk that will set off at 7am tomorrow from Regatta Point.

This is a great initiative to encourage people to talk with their families about registering for organ donation.

Helen reminds me that it was Terry who, back in the 1980s while I was in China, made sure that my ALP party membership dues were processed and kept in order.

And it was also Terry who recruited the Deputy Prime Minister to the Labor Party on campus at the University of Adelaide in the 1970s.

We will be walking tomorrow in memory of Terry, and in support of increased donor awareness.

The success of this week’s efforts is important to increasing donor levels and achieving the vision that is behind Australia’s national plan for organ donation.

Let me finish with this appeal to all Australians.

Take action and have a meaningful and informed discussion with your family about your wishes in relation to organ and tissue donation.

If you are not now on the organ donor list, please think about it and get your name on to it.

And I appeal to the nation’s media: tell the stories of organ donation and the gift of life it can be.

These stories get people thinking and acting.

They really make a difference.

Each of us can play a role in this great cause.

And many Australians will enjoy happier, longer lives as a result.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Wednesday, February 25, 2009

Immune system 'atlas' will speed detection of kidney transplant

Exciting discoveries continue to be made in the field of transplant research and this study may help to extend the life of kidney recipients in the future.

esciencenews.com

Published: Monday, February 23, 2009 - 17:37 in Health & Medicine

Scientists at the Stanford University School of Medicine and Lucile Packard Children's Hospital have devised a new way to decode the immune signals that cause slow, chronic rejection of all transplanted kidneys.

They've created an immune-system "atlas" that will improve doctors' ability to monitor transplanted organs and shed light on the mechanisms of gradual, cumulative kidney malfunction after transplant. "The reason chronic injury occurs in transplanted organs is really a mystery," said senior study author Minnie Sarwal, MD, PhD, professor of pediatrics at the School of Medicine and a nephrologist at Packard Children's Hospital. "Even patients who receive an organ from an identical twin develop chronic rejection."

The findings will be published online Feb. 23 in the Proceedings of the National Academy of Sciences.

Before an organ transplant, doctors check for compatibility between the donor's and recipient's immune systems, Sarwal said. They examine the genes encoding small proteins, called human leukocyte antigens, that label the exterior of every cell. These proteins are the immune system's main mechanism for distinguishing "self" from "non-self" tissues. Only identical twins have perfectly matched human leukocyte antigens; for other organ recipients, doctors use a donor with the closest match they can find. After transplant, an organ recipient receives strong drugs that reduce the body's ability to crank out antibodies — immune "search-and-destroy" markers — against the donated kidney.

But the fact that chronic organ rejection occurs even between twins suggests the immune system is doing more than keeping tabs on human leukocyte antigens.

The Stanford team set out to find what that was. The researchers devised a first-of-its-kind method to catalog every one of the antibodies attacking donated kidneys after transplant. They tracked evidence of all types of immune system attack by comprehensively comparing antibody levels in 18 kidney recipients before and after transplant. To do this, they melded two biological sleuthing systems, first comparing all proteins in the subjects' blood to an array of more than 5,000 human proteins, then running the results from that analysis through a genetic database that showed which blood proteins were antibodies designed to attack the donated kidney.

"This is pretty revolutionary," Sarwal said. "It opens the door to a lot of exciting work to personalize how we monitor these patients." The new findings will allow inexpensive, noninvasive blood tests that show whether a donated kidney is infected, undergoing acute rejection or accruing chronic injuries that could cause long-term malfunction, she said.

"An individual's antibody profile is a new aspect of human physiology that can now be surveyed in an unbiased way, the same way genes can," said co-senior author Atul Butte, MD, PhD, assistant professor of medical informatics and of pediatrics. "That's very exciting." Butte is also a member of the Stanford Cancer Center. Unlike genes, the body's antibodies change over time, a factor that could improve the effectiveness of personalized medicine, Butte said.

The team's raw data on antibody profiles is now publicly available to other scientists through the Gene Expression Omnibus database maintained by the National Center for Biotechnology Information, a division of the National Library of Medicine.

In addition to improving patient monitoring, the team's comprehensive list of anti-kidney antibodies will spur research on the mechanisms of chronic kidney rejection. For example, the study establishes for the first time what part of the kidney causes the largest immune response after transplant.

"To our great surprise, the most immunogenic region of the kidney is the renal pelvis," Sarwal said. The renal pelvis is the cavity deep inside the organ that collects urine and funnels it toward the bladder. The next-largest immune responses were observed at the cortex and glomerulus, regions of the kidney with large blood supplies and extensive exposure to the recipient's immune system. The next step in understanding chronic organ rejection will be to identify which specific anti-kidney antibodies are the most reliable harbingers of renal malfunction, Sarwal said.

"If we can correlate these antibodies with clinical events in the organ, we'll have the tools to extend the life of kidney transplants," Sarwal concluded.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Tuesday, February 24, 2009

Heart transplant recipient celebrates 25th anniversary

It's great to read about success stories such as Fiona Coote's. I will celebrate the 7th anniversary of my lung transplant April 20th and I sure look forward to celebrating my 25th.

Fiona’s heart still strong after 25 years

'Now 39, she attributes her prolonged well-being to daily immunosuppressant medication as well as a good diet, exercise and a healthy lifestyle'

The West Australian

When Fiona Coote had her first heart transplant, surviving five years was considered about the best she could expect. Twenty-five years later, she is still going strong.

“To be feeling so well and healthy is phenomenal, this is an incredible day for me,” said Ms Coote, who as a 14-year-old became Australia’s second and youngest ever heart transplant patient in 1984.

She had a second transplant two years later and has now survived longer than any other transplant patient in the southern hemisphere.

“Many of the doctors who treated me back then are still here today,” she said during 25th anniversary celebrations in Sydney, with scores of the other 1300 people given fresh hope of life at St Vincent’s Hospital’s world renowned heart and lung transplant unit.

“This time, just over 25 years ago, I had no health problems, then my life changed within a month,” said Ms Coote, who’s heart suffered complications from viral-induced tonsilitis.

Now 39, she attributes her prolonged well-being to daily immunosuppressant medication as well as a good diet, exercise and a healthy lifestyle.

She works as a physiotherapist’s assistant, saying: “Having my chest opened so many times has been very handy.”

The only Australian to receive a new heart before Ms Coote was a 39-year-old shearer from Armidale in northern NSW, who died months after his February 23, 1984, operation.

But the program started by the late Dr Victor Chang has become so successful that the five-year survival rate is now almost 77 per cent, well over the international standard of 68 per cent.

The transplant unit’s director, Dr Phillip Spratt, said St Vincent’s hoped this year to implant the southern hemisphere’s first totally artificial heart.

He said a $150 million Federal Government project to boost organ donor numbers was expected to lead to a 30 per cent increase in the hospital’s transplant operations.

NSW Health Minister John Della Bosca, who also marked the 3000th organ transplant at Sydney’s Royal Prince Alfred on Monday, said miraculous technology and brilliant professionals were helping to “extend the limits of human compassion”.

Double heart transplant patient Peter Wicks, president of the Australian Heart/Lung Transplant Association, presented St Vincent’s with a signpost from a Canberra Street recently named after Dr Chang.

He said he’d acquired it legally but had been prepared to “pinch it”.

SYDNEY
AAP

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Monday, February 23, 2009

Lung transplant recipient climbs Chicago's Hancock tower

FLASH! Steve Ferkau reports in his comments that Megan finished the climb to roaring cheers. (see comments at bottom of this post). The Respiratory Health Association in Chicago reports that over 4,000 climbers participated to raise money and awareness in the fight against lung disease.

I continue to be absolutely amazed by what organ transplant recipients are capable of following their transplant and Megan Herdegen's story is an inspiration to us all.

Megan Herdegen climbs Hancock Tower

Megan Herdegen of McHenry plans to climb 94 flights of stairs Sunday, Feb 22nd for the Hustle Up the Hancock fundraiser in Chicago as part of the Kari's Klimbers team. Herdegen had severe asthma growing up and underwent a double lung transplant in July 2007.
(Sandy Bressner, Northwest Herald)

Sunday, February 22nd
By Jenn Wiant Northwest Herald

ARLINGTON HEIGHTS – Megan Herdegen works out on the stair stepper and the elliptical machine seven days a week. She has been out of the hospital for three weeks after fighting off double pneumonia, and 19 months ago, she had a double lung transplant.

But Herdegen is happy that she can push herself. For the first time in about 30 years, she is able to run and exercise.

Today, her effort will culminate in a climb up 94 flights of stairs in the John Hancock Center in Chicago.

Herdegen, 29, had severe asthma growing up that caused her to spend weeks at a time in the hospital. She had to breathe through a tube in her neck for more than two years while she waited on the organ transplant list for new lungs. Each time doctors admitted her to the hospital, her family was not sure whether she would ever leave.

But in July 2007, the McHenry woman got the call that she had been waiting for during more than six years on the organ transplant list: A 22-year-old man had died, and his lungs were a match for Herdegen.

After a five-hour surgery, Herdegen recovered at her grandparents’ home in Arlington Heights.

She could not leave the house for three months while her body adjusted to the new lungs and her immune system strengthened.

Right around the three-month mark, her lung collapsed.

She said her lung had torn during another medical procedure, and she had to use an oxygen tank to breathe during her two-month recovery.

The medications that Herdegen takes to prevent her body from rejecting her new lungs weaken her immune system, so she still wears a mask in crowded public places. But she can do things she never could do before.

“I can run. I can really keep up with my nephew now,” Herdegen said. “I can blow up balloons. I could never do that before.”

Herdegen will participate in Hustle up the Hancock with a 99-person team called Kari’s Klimbers. Steve Ferkau, also a double lung transplant recipient, started the team seven years ago in memory of his donor, Kari Westberg.

“I’m very excited that Megan is finally able to take a crack at it with my team,” Ferkau said. He planned to climb next to Herdegen.

“I think she’ll do it,” he added. “The excitement takes over.”

Herdegen also plans to climb the stairs with her 26-year-old sister, Susie.

Secretly, she hopes to beat her sister to the top, she said.

“I wanted to do [Hustle up the Hancock] to prove to myself that I am better now since the transplant,” she said. “It makes me feel a little bit more normal that I can do this kind of stuff.”

The average climber makes it to the top of the building in about 25 minutes, Herdegen said. She expects it will take her more than an hour.

At the top, she will be thinking about what she accomplished, and how she never thought she would be able to try the climb before her transplant.

“I hope that I’ll be able to think, and that I won’t be gasping for air,” she said. “I will definitely be thinking of my donor.”

How to contribute:

Hustle Up the Hancock is a fundraiser for the Respiratory Health Association of Metropolitan Chicago.

Merv's note: Steve Ferkau, a double-lung recipient due to CF, started the climb as a fundraiser 7 years ago. He is a tremendous advocate for organ donation awareness and fund raising for lung disease research. Visit his web site.

Sunday, February 22, 2009

Medicine Abroad: Cheap But At What Cost?

Tom Glaister gives us an excellent overview here of the pros and cons of traveling abroad for medical treatment of various procedures and organ transplants. He notes that the cost of surgery in some countries can be one-tenth of what it is in the U.S. and lists some of the comparisons. But, he also notes some of the hidden costs, dangers and ethical questions concerning organ transplants, such as where the donor organs come from. This is an extensive but very good read for anyone wanting to know more about medical tourism and transplants abroad.

The cost of a medical procedure can't always be measured in dollars

By Tom Glaister ConsumerAffairs.com

February 20, 2009
I weaved my way across the Indian street, dodging traffic that was so random as to be fatalistic. The fumes sent up from the adulterated petrol were fast turning my mucous black and had in fact tarnished the signs on the building opposite. Squinting I could just about make out "Ajay Jain, Dental Surgeon" followed by some indecipherable initial letters as proof of qualification.

Sparks fell from an electricity pole overhead in a tangle of wires that would have made any American electrician faint. I hopped over a stagnant puddle and onto the staircase of the building which looked like it had never been cleaned in living memory. The walls smelled of human urine and by the time I reached the rubble-strewn balcony, I was beginning to wonder if the friend who had recommended I come here for my molar cavity was having a good laugh at my expense.

I knocked timidly on the door bearing a plaque with the name Jain and it swung open to reveal a gleaming white dental surgery. The floor was tiled and kept immaculately clean, air conditioning chilled the sweat on my forehead and there was a little table of magazines to read while waiting for one's appointment.

That was my first experience of seeking medical help abroad back when I was 19. I had the choice between seeing a local specialist or going back home. I tried my luck and found treatment as friendly and professional as in the West and half an hour of dental work cost me a grand total of 400 rupees — $10.

In 2007, 750,000 Americans also concluded that it was cheaper and faster to get medical attention abroad and that number was expected to double for 2008. To get an idea of how much money they hoped to save, check out the numbers from the report by Udaily, a publication of the University of Delaware:

"The cost of surgery in India, Thailand or South Africa can be one-tenth of what it is in the United States or Western Europe, and sometimes even less. A heart-valve replacement that would cost $200,000 or more in the US, for example, goes for $10,000 in India — and that includes round-trip airfare and a brief vacation package. Similarly, a metal-free dental bridge worth $5,500 in the U.S. costs $500 in India, a knee replacement in Thailand with six days of physical therapy costs about one-fifth of what it would in the States, and Lasik eye surgery worth $3,700 in the US is available in many other countries for only $730. Cosmetic surgery savings are even greater: A full facelift that would cost $20,000 in the US runs about $1,250 in South Africa."

And then there's the time factor; while a patient might wait a year for a hip replacement in the U.S., an operation could in theory be scheduled the day after arrival in the Phillipines and many other venues.

It comes as a surprise to many that Americans should need to travel to get medical treatment. The flashing images of wealth and glamour on MTV have convinced the locals in poorer parts of the world that everyone in America is rich.

"Everyone is having at least one swimming pool there," an Indian cigarette seller once told me with great authority. When I told him about the Americans who couldn't even afford health insurance he looked at me as though I was trying to pull the wool over his eyes.

Even for me it was a hard one to swallow when I first came to the U.S. Growing up in Britain, health care was always free and like most Europeans, I pretty much took it for granted. If I ever got seriously ill I always knew that I could just head back home and get diagnosis the next day. I couldn't imagine how Americans would experience any less security or care.

Then I met someone from Oregon who, unable to afford insurance or a trip to the dentist when pain struck, had taken out a rotten tooth with a pair of pliers. The same kind of thing that happens all the time in the Third World.

Big savings

Barack Obama won early support for his promises to reform health care in the U.S. and time will tell if he manages to deliver. But with American medicine plagued by Big Pharma sales reps, litigation and prohibitively high costs, a medical vacation to Mexico or Panama can save a family a lot of money.

Waiting for my luggage once in Guadalajara airport, I got chatting with an engineer from New York who had flown down with his teenage daughter so that she could get some corrective laser treatment for her eyesight.

"Look," he said, "I could have paid thousands of dollars to get her treated back home but instead we can get it done here for like a third of the cost — and we get to have a vacation together!"

The prospect of our health going wrong is one of the scariest out there. Debilitated by pain, we'd be unable to work and so unable to pay for treatment. Many American travelers that I've known on the road, however, have taken a rather more fatalistic approach.

"I don't even have insurance," one told me, "If I added up all the money that I'd be giving to some greedy company — and who knows if they'll find something in the fine print to avoid paying up — I could just book another flight somewhere warm and get treated there instead."

It sounds good

The thing about medical tourism is that it all looks good on paper. You save a lot of money, you get treated fast and it's an unexpected opportunity to go somewhere exotic. But believe it or not, when something goes wrong with your body, you're unlikely to be in the mood to soak up a foreign culture.

Bangkok is a center for medical tourists who come for plastic surgery, knee replacements and dental work and when I spent a month in the city doing some business, I got to know a few of them. They were easy to spot amid the other backpackers — whereas the other travelers skipped around with bright eyes on their big adventure abroad, planning river trips and island hopping, these poor souls had nothing more to look forward to other than the next appointment.

I took a cold coffee with one woman from Los Angeles who was there to do some cosmetic work on a disfiguring scar that ran down her left cheek, the result of a car accident. Whereas back home no one mentioned her injury, here she was asked a thousand times a day what had happened, a fact that did nothing to calm her nerves as she waited for the day of the operation. She was alone with no moral support, other than long-distance phone calls to a boyfriend back home, and had little in common with the other westerners who had only partying on their minds.

I could relate to her. Only a couple of years before I was living in Brazil when I found myself suddenly alone and ill; one night as I went to sleep I started getting lights flashing behind my eyes and experienced a kind of electric shock in my head. I put it down to the stress of living in Rio de Janeiro and moved to a village along the coast to chill out. The symptoms persisted though and I started to get seriously worried.

I saw a couple of Brazilian neurologists but although I spoke Portuguese and their English wasn't bad, it was miserable to be discussing my health in a second language. Worse, it was terrible balancing up the options available to me without friends or family around to talk it through with. So one day I dropped everything and flew home to see a doctor I knew I could trust. There was no price I could put on that.

Why is it cheaper?

It's also worth asking yourself just why medical treatment is cheaper abroad. It's not that the quality of attention is any less — at least not if you're sensible and make sure your chosen clinic is accredited by an independent body like the Joint Commision International — but other factors come into play.

Other countries may have quite distinct legal and working practices than you would find back in the U.S. Litigation, for instance, may be the bane of professional life in America, but at least it is an option. Suppose for instance, that your operation in India goes wrong — trying to sue a doctor there would be seriously injurious to your health, the case quite probably outliving you.

And whereas the quality and competence of doctors abroad is often every bit as good as in the U.S., you'll occasionally encounter a fairly flexible set of ethics. I remember reading a scandal in the Indian newspapers a couple of years back when doctors had been caught referring their patients for heart bypass operations when there was actually no need. They had simply been getting kickbacks from the surgeons.

Medical tourism is a growing industry and professional attention can be found abroad for just about anything from cardiology to plastic surgery to joint replacements. From Panama to South Africa, Turkey to Thailand, poorer countries welcome visitors in search of treatment with open arms and, while I heard local Thais complain that all their best doctors were busy treating the falangs, no serious harm is done by it.

The other side

There is, however, another side to the story that brings out some of the biggest ethical questions of all.

Despite the best efforts of donor agencies, across the Western world there is a shortage of organs for transplants. In an aging population, by the time donors die their organs are generally in less than top condition. So there you are: you need a liver transplant and the 6-month waiting list might prove fatal; a company in China claims they can perform the operation the day after you arrive — just how many questions would you ask about where the organ comes from?

In countries like China and India, human life is cheap. Street children go missing all the time and are dumped back on the streets minus a kidney. The same can happen in state hospitals where doctors can augment their income by taking advantage of an anethetized patient.

If it's hard to believe that humans could stoop so low, take the case reported by the British newspaper, the Guardian, when they exposed the business in organs from executed political prisoners. The company concerned advertised that, "Viscera providers can be found immediately!" — some poor enemy of the regime executed to supply a fresh heart for a customer from abroad.

Even when people have parted with a kidney voluntarily, it's often for a pittance, many ending up with less than a thousand dollars. They may have been promised more but were then cheated and they may have lacked the education to understand how their health might suffer after such an operation.

We, as patients, are assured that the organ came from a willing, well-paid donor and, as we're unlikely to ever meet the poor sod, we give the clinic the benefit of the doubt. After all, we want the transplant.

Sentiment against so-called "medical tourists" is rising in some countries that have made a business out of providing transplants and other surgeries to wealthy foreigners while, in many cases, their own citizens make do with substandard care.

Even China, which sometimes seems willing to do just about anything, is having second thoughts. It has banned all organ transplants for foreigners while it investigates reports that 17 Japanese tourists received illegal kidney and liver transplants while 1.5 million Chinese languished on waiting lists.

Hidden costs

In short, the smart consumer should always look for the hidden costs.

Yes, a vital operation can be arranged abroad cheaply but will it be traumatic to undertake something so important in a foreign setting? Yes, cosmetic surgery is cheap in South America but will we really start following the example of the Argentines and buying breast enhancements as presents for our teenage daughters? And yes, a life-saving organ can be found at short notice in Asia — but can we live with ourselves if we don't know where it came from?

Whatever the ethical and emotional issues surrounding medical tourism, it's clear that it's only going to increase. In a globalized world we'll always head for the cheapest and fastest option. It was director Jim Jarmusch, however, who noted that of the three qualities cheap, fast and good, you could only ever hope for two of them at a time.

---
Tom Glaister is the author of children's books www.bozoandthestoryteller.com and is also the founder and editor of www.roadjunky.com - The Online Travel Guide for the Free and Funky Traveller.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Saturday, February 21, 2009

Foreign patients get organ transplants in the UK

By Sue Reid Daily Mail

Why are so many foreign patients allowed to come here and take organs donated to the NHS?

Looking at her now, it is hard to believe. Exactly four years ago, Elena Maniati was close to death. Her eyes were canary yellow, her skin sallow and her weight down to five stone (70 pounds - 32 kg) - ravaged by liver disease.

Pathetically weak, she struggled to walk more than a hundred yards. Meeting friends was impossible, in case they gave her an infection.

Her flourishing career as an accountant was over and, in the prime of life, all that Elena could do was pray for a miracle.

Yet today she is the picture of health. Sitting in a Greek seaside town, 100 miles from Athens, she is smiling as she explains:

'My life was saved by a liver given to me by one of your people in Britain. The doctors who carried out my transplant are the closest beings to God.'

Elena is alive today thanks to the liver of an anonymous Briton who died in February 2005.

She doesn't know if it was the liver of a man, woman or child, but within hours of their death, it was transplanted into her frail body by surgeons at the Royal Free Hospital in Hampstead, North London.

The operation was a complete success. Elena is back in Greece with her company director husband, Tassos, and working as a government tax official.

However, her case and hundreds of others like it are at the centre of a major international medical debate about the morality of giving organs to foreigners when here are not enough for British patients.

Government ministers recently revealed that 795 organs from British donors have been transplanted into sick foreigners at NHS hospitals over the past ten years.

Hospitals involved in this controversy include London's King's College and the Royal Free, Leeds General Teaching Hospital and London's famous Great Ormond Street Hospital for Children.

The operations are paid for by overseas governments, who have handed over millions of pounds to British hospitals, and by private funds.

The hospitals here welcome this money from abroad. They almost invariably put these foreign patients in private beds and, contentiously, some surgeons have received £20,000 ($28,886 U.S.) for each operation.

Meanwhile, 8,000 very sick British people - nearly 200 of them children - are on NHS lists, waiting for organ transplants which could save their lives. This figure is at an all-time high and campaigners say more donors are desperately needed.

According to Organ Transplant UK, almost 500 Britons died last year while waiting for a transplant, and hundreds more became too ill to undergo the complex surgery.

More than 250 of these individuals need new livers and, tragically, one in five will die before they get a transplant. A further 6,000 are waiting for a kidney, 226 need a lung and 82 require a new heart.

It is not surprising, therefore, that many are questioning why organs from British donors are being given to foreigners while so many British patients wait for transplants - often in vain.

Tory Shadow Minister for Health Stephen O'Brien says: 'This is not about being xenophobic. I am angry this is happening at the cost of British lives. There is a shortage of organs for transplant. We need to ensure they go to patients from this country.'

To counter such criticism, the Government claims that over the same decade, 140 organs from foreigners have been imported to the UK for transplants. However, these are not necessarily allocated to British patients.

Under EU rules, residents of any member country can travel to Britain for medical treatment. If they undergo organ transplants, usually the cost is met by their own health service.

The rules are different for patients outside the EU: they have to pay privately, but are entitled to a donated organ only if it is not suitable for a sick British or EU resident.

It is true that some British patients head overseas for transplants. But these operations are never funded by the Government, are always carried out in desperation and seldom are in an EU country.

Between 2000 and 2007, 170 British patients went abroad for transplant surgery and received foreign organs, mainly kidneys.

Two-thirds went to Pakistan and India, while others travelled to the Philippines, Iran, China and Egypt, where the private sale of organs is rife.

The NHS, however, has warned that this practice is dangerous - a number of patients died after travelling overseas for treatment, and others caught infections during the surgery, including hepatitis C.

What makes matters worse for those British patients waiting for a transplant back home is the fact that hospitals have been told to treat all patients in order of strict
'clinical priority'.

This means that a patient from another EU country can leapfrog a Briton who is less ill when an organ equally suitable for both patients becomes available.

It must be made clear that not all British hospitals equipped with transplant facilities are prepared to go along with this official policy.

Some doctors are so appalled by what they believe to be blatant unfairness against Britons that they are defying the rule and refusing to give organs donated by Britons to foreigners.

Dr Mervyn Davies, a consultant liver specialist at St James' Hospital in Leeds - which does not treat transplant patients from abroad - says: 'There is a shortage of donors, and we cannot cater for the whole of the European Union.'

The Government's own unpublished figures show that over the past two years, 40 Greeks and Cypriots alone have received British organs.

In addition, Libyans, Chinese, Israelis and patients from the United Arab Emirates - all outside the EU - have been given livers, kidneys and hearts donated here.

A critical organ shortage in Greece, Cyprus and many parts of the Middle East means there is a never-ending demand. There is a religious and cultural reluctance in these parts of the world to donate the organs of a dead relative for transplantation.

In Orthodox Christian and Muslim faiths, it is considered a sin to send someone into the next world if their body is not completely whole.

This crisis has been worsened by the high rate of liver problems in these countries.

In Cyprus, for instance, four people every year are discovered to be suffering from hereditary amyloidosis (a deadly complaint provoked by toxins produced by the liver which gradually poison the body). The only cure is a liver transplant.

High rates of hepatitis also affect the populations of Cyprus, Greece, and the Middle East.

Almost 2 per cent of the Greek population is a carrier of the liver disease, which can be inherited or passed on from mother to child during birth. In the most serious cases, a transplant is the only way of saving a sufferer's life.

Few of those foreigners who have received a transplant in Britain are aware of the growing controversy. They are simply grateful to this country and our doctors for their lifesaving treatment.

Typical are Elena Maniati and other Greeks and Cypriots who have travelled to Britain for operations.

The Greek Association of Transplant Patients, an organisation that gives post-operative care, has 287 members. Astonishingly, more than half have been given organs from British donors.

A spokeswoman said there may even be more, because not all those who have received British organs are in her association.

Dr Yannis Boletis, of the Laiko Hospital in Athens and co-ordinator of Greece's foreign transplant programme, says: 'I can understand why Britons feel they are being sidestepped for the sake of foreigners.

'A Greek in Athens would probably have the same grievance if priority was given to an Englishman here.

'However, that is the meaning of the European Union. Here, in Greece, we have too many patients needing transplants. We just cannot cope with the demand.'

His colleague, Dr Efstathios Antoniou, a liver specialist who once worked at Birmingham's Queen Elizabeth Hospital, added: 'Every NHS hospital has private wards and any foreigner has the right to use them.

'It is not our responsibility to say how your hospitals give priority over organs to patients.

'We just know Greek and British patients are on the same waiting lists and have the same chance.'

Panayotis Papoutsis, 68, is one of many who have benefited from Britain's generosity.

In Athens this week, he clasped me by the hand as he told how London's Royal Free Hospital saved his life after he was given tainted blood in Greece during an operation for burns he had suffered during a factory accident.

He subsequently contracted hepatitis C and endured a severe inflammation of the liver.

'I could not even walk up steps because I was so weak. My skin was yellow from the jaundice and though I loved life, I knew I was about to die,' he says.

The only solution was a new liver. 'I asked to be put on the list in Greece - but fewer than 30 liver transplants are carried out each year. There is a shortage of donors because many people are religious and believe that when they die they must go to heaven with all their organs inside them.

'My doctor put my name down on the list in Britain, too. I visited London for tests and was told I was in fifth place at the Royal Free Hospital in Hampstead.'

Mr Papoutsis moved to London and for the next few months lived in a small flat near the hospital while he was prepared for the operation.

'I met people from all over the Middle East and Europe who had come to the Royal Free for organ transplants,' he says.

'Then, eight months after the first tests, I got the call. The doctor said that an organ had been found for me. I had the eight-hour operation the next day.'

The cost of the operation was paid to the private wing of the hospital by Mr Papoutsis' professional engineers' association and the Greek government.

Now, several years later, Mr Papoutsis says: 'I carry part of an Englishman inside me, so I will always feel close to your country.'

Elena Maniati is equally grateful to Britain. She was born a carrier of the virus Hepatitis B, which can gradually inflame and then destroy the liver.

Her health problems flared up when she was 34 during the pregnancy of her first child. She lost the baby and became increasingly ill as her liver failed. She was desperately ill and went to see her doctor in Patras, her home town.

'He grabbed me by the upper arm, which was as thin as my wrist,' she says. 'I had no muscles and he felt just skin and bone. He said: "You must have a liver transplant or you will die." '

The doctor decided to place her name on the Greek waiting list. 'Meanwhile, he begged the British authorities to take me, too,' she says. 'He told me to go to England and wait for an organ to become available at the Royal Free Hospital.

'I lived alone for a year in a flat near the hospital. I was too weak to do much, apart from sew and occasionally pray at the Greek church nearby. I just waited.'

In the late summer of 2004, her hopes were raised when the hospital said they had a liver.

'But it was too fatty, and could not be used,' she says. It was more than six months later, in February 2005, that Elena finally had the transplant - which cost more than £50,000 and was paid for by the Greek government.

When she returned home, her strength gradually improved and she went back to work.

'In September, I received another call,' she says. 'It was from the Greek hospital saying that an organ had become available and I was top of the list.

'Of course, I told them to give it to someone else who needed it. I said I had been to England and had been made well again.'

Stelios Pamboris tells a similar story. He was the first person from Cyprus to go to Britain for an organ transplant, in August 1993.

The postal administrator was in his 30s and suffering from amyloidosis - his damaged liver was poisoning every other organ in his body.

'It was my doctor who suggested that I become a guinea pig and go to England because I was dying and had a young family,' he says.

'I lived there for three months, waiting for a suitable liver to become available at King's College Hospital.'

The operation, paid for by the Cypriot health authorities, was carried out by a team under Professor Nigel Heaton.

'I wasn't scared,' said Mr Pamboris. 'The doctors and staff were so reassuring. I felt in good hands. Afterwards, they wanted to check on me twice a month, so it was a long time before I could go back to Cyprus.

Mr Pamboris, now 58, whose mother and aunt both died of amyloidosis, will always remember King's College Hospital and the doctors who saved his life.

But what of the donor's family who, no doubt, believed that the liver from their dead loved one would go to a fellow Briton?

And what of those British patients waiting for a new liver at the same time who may even have died as a result of not getting it?

How do people like Donna Browne and Stuart Collins - whose one-year- old son Ethan Collins will die within weeks if he does not receive a new liver and intestine - feel about overseas patients taking organs from British donors?

Ethan was born a month premature and needed immediate surgery for an intestinal condition, but doctors were able to save only part of his gut.

He is in Booth Hall children's hospital in Manchester waiting for a donation to become available. His parents have set up a group on the social networking website Facebook, urging people to register as organ donors.

'If I found out that someone from another country had got an organ donation and it could have been my son, I would be very unhappy,' said Donna, from Whitefield near Manchester.

Despite the anger felt by patients' groups, officials at King's College Hospital and the Royal Free have defended their right to treat transplant patients from the EU and say they will continue to do so.

No wonder that people like Stelios Pamboris and Elena Maniati - and the other foreign patients we spoke to this week - say they cannot believe the generosity of this country, or indeed, their luck.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Friday, February 20, 2009

Surge in kidney donors worldwide

Straits Times

LONDON - KIDNEY transplants from living donors have surged worldwide over the past decade, researchers said on Wednesday, adding more organs are still needed from people who have just died.

They estimated 27,000 transplants take place every year from living donors - representing 39 per cent of all kidney transplants - with majority in the United States, Brazil, Iran, Mexico and Japan.

'Our study shows that living donor kidney transplant rates have steadily risen in most regions of the world increasing its global significance as a treatment option for kidney failure,' the researchers wrote in Nature's journal, Kidney International.

Better understanding of these global rates is important as severe kidney disease requiring transplants rises worldwide due to aging populations and unhealthy diets leading to diabetes and other conditions, they said.

Researcher Lucy Horvat and her colleagues at the University of Western Ontario in Canada said understanding who donates and why in different countries can help officials find ways to increase kidney and other organ donations.

'This is the first comprehensive report of its kind and it emphasizes the growing significance of living kidney donation worldwide,' Ms Horvat said in a telephone interview.

A kidney transplant can get a person off dialysis and back to a normal life but the shortage of deceased donors pushes more people to seek an organ donation from friend or relative, Ms Horvat said.

Her team analysed data from health registries, transplant networks, published studies and national health ministries in 69 countries.

They estimated the number of living kidney donor transplants grew over the last decade, with more than half of the countries reporting at least a 50 per cent increase.

The researchers said Saudi Arabia ranked highest in the world for its living kidney donation rates, with most donors unrelated to the recipients.

Iran came in third and has no waiting list, likely due to a controversial system under which patients can pay for donated kidneys.

The researchers only reported legal living donations and said the overall number is likely higher.

The World Health Organisation estimates about 10 per cent of all organ transplants worldwide involve unacceptable or illegal transplants. -- REUTERS

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Thursday, February 19, 2009

Artificial lung kept teen alive until transplant

This story has special meaning for me because Dr. Shaf Keshavjee is the surgeon that performed my lung transplant and saved my life. He is one of the world's leading scientists in the field of lung transplant research and lung transplant surgery. His body of work is having a global impact and I am proud to know him.

Dr.Shaf Keshavjee


Katie Sutherland, a lung transplant patient who was kept alive with an external artificial lung system, speaks with Canada AM in Toronto on Wednesday, Feb. 18, 2009.
Go the CTV story for photos, video report,  interviews

CTV.ca

Last summer, 16-year-old Katie Sutherland was on the brink of death, her lungs failing, her heart working far too hard. She needed a lung transplant quickly but no good matches were available.

Then, her doctors at Toronto's Hospital for Sick Children decided they would take a risk and try something that had never been performed before on a child. They hooked her up to an external artificial lung system.

The procedure allowed Katie to stay alive for an entire month -- long enough for suitable donor lungs to become available. Today, with new lungs in her chest, Katie is resuming a normal life, thanks to the bold decision of her doctors.

The device the doctors used was the German-made Novalung. The device takes over much of the job of circulating her blood, filling it with oxygen and filtering out the carbon dioxide. Unlike older artificial lungs which were run by mechanical pumps, Novalung is powered by the patient's own heartbeat.

Just two years ago, an Ontario mother became the first adult patient in North America to be hooked up to a Novalung, when doctors at Toronto General Hospital helped Yen Tran stay alive long enough for a heart and lung transplant.

Like Tran, Katie was suffering from pulmonary hypertension, a rare disorder in which the blood vessels in the lungs constrict, forcing the heart to work much harder than normal.

In the days before her surgery, Katie's heart was failing fast. It had swelled up to four times its regular size but was still unable to pump enough blood.

A 10-member team led by Dr. Shaf Keshavjee, Dr. Marc de Perrot and Dr. Andrew Pierre, SickKids cardiovascular thoracic surgeons, decided Katie needed surgery fast.

Keshavjee (pictured) told Canada AM Wednesday that Katie was so ill in the hours before her surgery, she almost certainly would have died that night.

"Patients with pulmonary hypertension are amongst the most challenging because they die so quickly and so suddenly," he said.

"So this (Novalung) really does open the doors and gives us a bridge for a period of time for when we might get an organ donor."

The three-hour surgery was difficult; at one point, Katie's weakened heart went into cardiac arrest.

But afterwards, the teen's condition improved almost immediately. Two days after being put on the Novalung, Katie could go off her ventilator. She was able to sit up in her hospital bed, eat, and talk with family and friends while attached to the artificial lung.

Then, 30 days later, Katie's family got the news they had been waiting for so long: a pair of donor lungs had become available.

Katie is now home again with her new pair of lungs, back to school and just returned from a surfing trip. Her father, Paul Sutherland, is filled with gratitude for the staff at SickKids.

"We know that Katie's life has been saved, and we are incredibly thankful to the staff," he says. "To actually experience a technological step forward is very humbling."

And Katie is amazed that an artificial lung the size of a portable CD player kept her alive.

"It just seems unreal that this little box saved my life," she told Canada AM.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Wednesday, February 18, 2009

Lung recipient says my life is "really, really good"

Tuesday, February 17, 2009
Woman’s ‘good life’ is all relevant

By Dianne Williamson telegram.com, Worcester, MA

Maryanne Jackson and her son David were 30 miles outside Buffalo yesterday, cruising in David’s Toyota Corolla with the radio off, talking about grandchildren, summer jaunts, and real estate.

“We’re making plans,” David said happily.

For much of Ms. Jackson’s adult life, plans were a luxury reserved for others. It was 1989 when the mother of two was diagnosed with a life-threatening, incurable lung disease that robbed her of the ability to do the simplest things — travel, take walks, even breathe. An oxygen tank was her constant companion, along with a fear that she wouldn’t live long enough to see her new grandson grow.

One year ago, I told you Ms. Jackson’s story. How she and her husband of 20 years divorced four months after her diagnosis. How she picked herself off the floor and got her first full-time job at age 42. How, in 1995, illness forced Ms. Jackson to sell her beloved home near Tatnuck Square and move to a subsidized apartment in Westboro.

Despite everything, she managed to maintain the optimism and sunny disposition that earned her an army of devoted friends.

“I had two choices,” she told me last February. “I could either lie down and die, or get back on my feet … But I have a good life.”

Today, she has a better one. A year ago she was on the waiting list for a double lung transplant; yesterday, she and her son were headed to the Cleveland Clinic so doctors could check on the healthy pair of lungs she received in November.

“It was a very hard process,” Ms. Jackson said. “But the doctors called it a textbook perfect transplant, and I’m getting stronger every day.”

The illness is called Alpha-1 Antitrypsin Deficiency, a genetic disorder in which a protein that helps protect the lungs can’t get into the bloodstream. Last year, the Cleveland Clinic put her on the waiting list for a double transplant and prepared a Lear jet to pick her up at Worcester Regional Airport.

Last May, the first call came. Ms. Jackson was flown to the clinic and prepped for surgery, but the lungs weren’t viable. On Nov. 9, however, she flew back to Ohio and underwent a successful transplant with lungs from a young girl who Ms. Jackson believes died in a car accident. After a year she can learn the identity of the donor if she’s willing, Ms. Jackson said.

In December, while recuperating in Cleveland, Ms. Jackson’s mother died and she was unable to come home for the funeral. Ms. Jackson was born on her mother’s birthday, Feb. 11, and she just turned 62. With the transplant, doctors said she has a 47 percent chance of living five years, although many patients live longer than that.

But it’s the quality of her new life that she marvels at.

“I can hold my grandson,” she said. “I can take a shower without suffocating. I can take a walk. I couldn’t do anything before. There’s not one special thing that I want to do. I just want to have regular days like a normal person.”

Yesterday, her son David was at the wheel for the 10-hour drive to Cleveland. Sons David and Paul have stayed by her side throughout the medical odyssey. David’s son, Cale, is one year old; Paul is expecting his first child in June.

“It’s like I have my mother back,” David said. “A month ago she picked up Cale and it was amazing to see how he cuddled right up to her.”

David doesn’t mind the long drive. He and his mom have talked about the summer trip the family will take to Maine. They talk about children and grandchildren. David told her that he and his wife want to find a home with an in-law apartment, so Ms. Jackson can move in with them. He said he wouldn’t trade the drive for a first-class seat on a luxury jet, because it allows him to reconnect with the woman who overcame enormous challenges to give him and his brother a normal life.

“You know that T-shirt that says, ‘Life is Good?” Ms. Jackson asked. “Well, my life is really, really good. I’m going to have to make a new T-shirt.”

Donations may be sent to the Maryanne Jackson Transplant Fund, Bank of America, 306 Turnpike Road, Westboro, MA 01581.

Merv's note: Maryanne Jackson, when faced with adversity, said “I had two choices, I could either lie down and die, or get back on my feet … But I have a good life.” I highly recommend an amazing video of someone who was faced with unimaginable obstacles but through sheer willpower and a determination to never give up and make the best of what life handed him, succeeded in overcoming his adversity. click here to view

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Tuesday, February 17, 2009

Young heart recipient active and healthy

Taylor Stang was desperate for a heart transplant three years ago. Today, she's as active as any seven-year-old

heart Taylor Stang. heart recipient

If heart-transplant recipient Taylor Stang can look on the bright side, so can we all. (Jordan Verlage/Sun Media)

By CLARA HO, SUN MEDIA, Edmonton, Alberta

Three years ago, Taylor Stang - an energetic little girl with pink glasses and a shy smile - was weak and sickly, and in desperate need of a new heart.

Doctors discovered she had a rare heart condition called restrictive cardiomyopathy, where the heart muscle was overgrown, preventing the heart from pumping properly. The only treatment was heart transplant surgery.

Taylor, who was five at the time, suffered occasional vomiting, stomach aches and bouts of pneumonia. She also dropped to 27 pounds.

"It was very painful to watch her lose weight," said mom Cathy Stang.

"The waiting was hard too. There's nothing you can do. You can't buy her a heart. You can't make her a heart. You just have to wait for that call."

Within seven months of Taylor's diagnosis, a heart became available and she underwent surgery with success.

Less than three weeks later, Taylor was out riding her bike, which "was pretty amazing," Cathy said.

Last week, Taylor was darting around the Stollery's play area - aptly named "the beach" - running past images of palm trees and sandboxes with plastic toys and Tonka trucks.

"Look, mom," said the Rocky Mountain House girl, showing off a pink heart-shaped card she had made for her mother, the words "I love you" written with a bright red marker.

"She's full of energy," said Cathy, laughing as she watched her seven-year-old daughter dash back to the arts and crafts table.

"She is so active. She does gymnastics. She skis. She skates. She just passed level two in swimming lessons. She also does tap dance. Everything a child her age can do, she does."

Dr. Yashu Coe, a pediatric cardiologist at the Stollery, was impressed with Taylor's progress.

"If you met her on the street, you wouldn't think she has had a transplant," Coe said.

However, Taylor needs to take various medications every day to survive. She is also at risk of developing cancer and infections later on as a result of anti-rejection drugs, which suppress the immune system, Coe said.

"Having a transplant is not the same as putting a new engine in the car and you're fine to go. There's a lot of fine tuning and monitoring that needs to be done," he said.

"There are some tradeoffs of being on the anti-rejection drugs, but as you can see, the payoff far outweighs the risk."

Cathy said she hopes researchers can one day develop a heart using Taylor's DNA to avoid the risk of rejection. This could also save her five-year-old daughter Brooke, in case she develops the same condition, which is genetic. Brooke gets tested regularly for signs, and it's "so far so good," Cathy said.

Recently, Taylor and Cathy travelled across the province to raise awareness about pediatric research and organ donation for the Heart and Stroke Foundation.

"(I want) to help kids," Taylor said.

"If they see you, maybe it will give them strength because you have been through a lot," Cathy said.

Coe said it's also important to acknowledge the donors in these transplants, because "nothing would be possible without their compassion and forward-thinking."

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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