Tuesday, May 31, 2011

Happy Memorial Day

Happy Memorial Day in the U.S. as we honor our loved ones.


“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Monday, May 30, 2011

Teacher Needing Double-Lung Transplant Has Appointment Next Month

GREENSBORO, N.C. (WGHP)— A Dudley High School teacher who was taken off a double-lung transplant list in March will find out next month if she can get back on one.

Freda Moseley was taken off the transplant list until UNC Hospitals officials were confident that she could pay for her operation. On June 20, she will go to Duke Hospital to see if she can be placed on their list.

Moseley has sarcoidosis, which hardens some of the body's organs. Doctors don't yet know how the disease develops, but what is known is that Moseley never smoked.

When FOX8's Bob Buckley highlighted Moseley in February, she was seen teaching while hooked up to oxygen. Moseley is now on leave.

Since the story aired, many in the Triad have contacted the station wanting more information on how to help Mosley. Fundraisers have helped pay for Moseley's health insurance, as well as give her and her family the fight to go on.

Many have donated to Freda on behalf of the National Foundation for Transplants, but those close to her say the best way to help is to donate to Freda directly. For more information, you can drop off your checks with Dudley High School treasurer Hazel Miller or E-mail Moseley directly at moselef@gcsnc.com

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Friday, May 27, 2011

UK 3-year-old dies while waiting for a heart transplant

Mum's heartbreak following death of 'cheeky' Paige

by Liz Perkins Health Reporter this is South Wales

THE mum of a "cheeky" three-year-old Swansea girl has spoken of her shock after she died suddenly from a rare heart condition.

Paige Thomas died at Birmingham's Children's Hospital on May 10, while she was on a waiting list for a heart transplant.

Her mum Lynzi Thomas, 23, of Ravenhill, was told by doctors at 21 weeks into her pregnancy that her unborn daughter had the rare condition — hypoplastic left heart syndrome.

It is a rare condition which affects around one in 5,000 babies and accounts for one per cent of all congenital heart disorders.

Shortly before Paige's death, medical experts told Miss Thomas her daughter's heart valve pump was no longer working.

She said: "It was a shock when she died. She meant the world to me and she still does now.

"Paige was brilliant, she was a cheeky little thing.

"You wouldn't think there was anything wrong with her.

"She looked like any other child."

Miss Thomas said she was given the option to abort her pregnancy by doctors when they discovered she had a heart complaint.

But she was adamant she was going to have Paige, despite the warnings she would need further medical help during her life.

"I was just devastated when I found out she had a bad heart," she said.

"Paige was my first child.

"They said if I carried on with the pregnancy, the baby would have to have numerous heart operations.

"I was told when she was older she would have to have a heart transplant.

"The doctors asked me if I wanted to have an abortion but I didn't want that to happen."

From the moment she was born in the women's unit in Birmingham, her mum was only allowed to hold her for a couple of minutes before she was whisked away to be taken into intensive care.

Doctors had to ensure they kept the valve in her heart open and at just three days old she had to undergo an operation. Paige had to have another heart operation when she was just two-and-a-half months old and spent most of her young life having to see medics at Singleton Hospital.

"It's a rare condition which is found mainly in boys," Miss Thomas added.

"She was on medication when she was born."

It was three months ago when the three-year-old took a turn for the worst.

"Paige was sent up to Birmingham and I was told her heart valve pump had gone," she added.

"The doctors offered her a heart transplant or said they could leave it as it was."

Miss Thomas said she wanted her daughter to undergo a heart transplant.

But she added: "Paige didn't get the transplant.

"We were up there for two months and in the ninth week she passed away."

She said she had hoped to celebrate her 24th birthday and Paige's fourth birthday this year.

But she was full of praise for her family's support following her daughter's sudden death.

The youngster's funeral was held at St Illtyd's Church, in Fforestfach, on Friday, May 20, before she was buried at Morriston Cemetery.

Miss Thomas added: "My family has been really good."

elizabeth.perkins@swwmedia.co.uk

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Thursday, May 26, 2011

Jewish man honors 13-year-old liver with Bar Mitzvah celebration

Toronto professor Dr. Frank Bialystok marks the day he received a liver transplant as a second birthday.

By Riva Gold Jewish World
When a Jewish boy turns 13, he enters manhood. But what happens when a Jewish man's internal organs turn 13?

Frank Bialystok, 64, decided to honor his 13-year-old transplanted liver with a bar mitzvah ceremony, the first of its kind in the world.


Frank Bialystok, 64, and his family celebrate the bar mitzvah of his transplanted liver on April 16, 2011
Photo: Riva Gold


Standing before a packed congregation at the Darchei Noam Reconstructionist synagogue in Toronto, Bialystok described himself as "a representative of my transplant brothers and sisters, but also as a fortunate and humble man who was given the gift of life when so many have died in Canada waiting for a healthy replacement organ."

“My pre-owned liver and I are privileged to be here with you as we undertake this symbolic rite of passage,” he said, before reading from the Torah.

A professor at the University of Toronto, Dr. Bialystok related the week’s Torah portion, “Acharei Mot” or “After Death,” to his own experiences as the only child of Polish Jews who survived World War II in the Soviet Union.

Bialystok was born in Poland in 1946, where he and his father unknowingly contracted Hepatitis from the unsanitary conditions surrounding their smallpox vaccinations.

“The tragic irony of our lives is that both of us had Hepatitis, but neither of us knew this,” he explained. His father would die of the condition in 1969.

After discovering he had Hepatitis C, Bialystok underwent a successful liver transplant, and has since celebrated his transplant anniversary as that of a second birthday.

Five years after his successful operation, Frank’s daughter came up with the idea for the bar mitzvah.

At the ceremony, Dr. Bialystok described the experience as overwhelming. “What I'm experiencing today is these marvelous connections: between the Jewish people and the Torah; from the birth of Israel three thousand years ago and its rebirth in our time; […] and my birth in Poland and my re-birth in Toronto,” he said.

The renowned professor is hopeful that more Canadians will be encouraged to sign their organ donor cards as result of his “re-Bar Mitzvah.”

Darchei Noam’s rabbi, Tina Grimberg, urged the congregation to take heed of Dr. Bialystok’s message in an impassioned speech. “There is an unfortunate misconception that Jews are not supposed to donate organs,” she explained. “But I stand on the shoulders of many great and venerable rabbis when I argue that there is no contradiction between Jewish law and organ donation,” she said. “It’s a mitzvah.”

Rabbi Grimberg stressed that organ donation is consistent with Jewish values and does not contradict the controversial passage in Ezekiel that has been cited by some as evidence against organ and tissue donation.

“We’re incredibly lucky to be part of a generation that, thanks to organ donation, can live on after death,” she said. “This is something we owe to ourselves, to our communities and to humanity.”

England’s venerated Chief Rabbi Jonathan Sacks issued a similar message about organ donation in the Jewish Chronicle in January. “Saving a life is a fundamental imperative in Judaism and, if we can do so without endangering our own lives, we should,” he wrote. “Even those who do not accept brain-stem death would still be able to donate organs in 70 percent of cases,” he wrote, concluding that “I will myself, and will encourage others to do so.”

Dr. Bialystok celebrated his “re-bar mitzvah” on April 16, the day before the start of Canada’s National Organ and Tissue Donation Awareness Week. In the same service, his third grandchild, three-week-old Rebecca, was introduced to the synagogue for her official baby-naming.

Rabbi Grimberg told the congregation that she had a hard time coming up with the appropriate blessings to bestow on the unusual bar-mitzvah subject. “We normally wish our bar mitzvah boy a good education and a nice family,” she joked, “But our bar mitzvah boy has a PhD and three grandchildren.”

In addition to his work with the Canadian Liver Foundation and the Hepatitis C Research and Training Program, Professor Bialystok is a Chair of the Canadian Jewish Congress, a founding member of the Polish-Jewish Heritage Foundation of Canada, and an active participant in several anti-racism organizations. He has been awarded the Tannenbaum Prize in Canadian Jewish History and the Cavalier’s Cross of the Order of Poland.

“And all this before his bar mitzvah,” a congregant teased.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Wednesday, May 25, 2011

Heart/Lung Transplant Recipient Celebrates 24 Years With New Organs

I apologize for the lack of posting during the past few days. Google has had issues with blogger which prevented many users from accessing their blogs. The problem now seems to be fixed for most users.


'Give someone life and hope by being a donor'


'Give someone life and  hope by being a donor'

By Tom Bevan www.thisisexeter.co.uk
THROUGHOUT his childhood John Mordue's prognosis was grim, yet he continually defied the odds and lived long enough to become one of the country's first heart and lung transplant patients in his 20s.

Nearly a quarter of a century later he has lived a full and happy life and says he cherishes every day spent with his family.

"I don't play the lottery as I have already won it," the 49-year-old, of Pinhoe, said.

But he knows that others aren't as lucky.

That is why he has spoken today in support of the Echo's Lifesavers campaign that is encouraging anyone who would be willing to accept a transplant to sign up to the organ donor register and consider giving one.

He said: "I always think about how lucky I am and I have beaten the odds throughout my life. When I was born they did not expect me to go to school. In the 1960s the treatment was very poor and the prognosis for children with cystic fibrosis was mortality.

"When I made it to a toddler they didn't expect me to make it to secondary school.

"Then they said I would die as a young man. If I had not had the transplant I would have been dead by 26 or 27 but I just kept hanging in there."

John was a frequent patient at the Royal Brompton Hospital in London and at the time of being offered the transplant had been told there was no further treatment available.

Describing his quality of life at the time he said: "You adapt and get used to it but don't really see the problems that other people do. Things were really tough in hindsight. It took ages to get dressed and having a bath was a bit of a nightmare."

John waited over a year for a match to become available. The date was November 18, 1987, and it was a night he will never forget.

It was in the days before mobile phones and John carried a pager with him wherever he went.

He said: "I remember poignantly and vividly that this was the night of the Kings Cross fire that killed 31 people.

"I had no change for the phone box and was in a mild panic to try to get some change from someone. I then went back home and waited.

"There were no ambulances available in the whole of London so one got sent from Cambridge. As I was waiting we were getting news of this horrible tragedy.

"While I was waiting for something that would give me the gift of life, there were families all across London being told they had lost a loved one. It really brought home to me the cost of a new life."

John was 26 at the time and described the initial improvement as "slow but steady."

He said: "I was out just before Christmas, but it took nearly a year for me to get fit. Previously I had not been able to walk and had no real muscle in my legs. My breathing was now fine but it was the rest of my body I had to sort out.

"If I had not had the transplant I would have died and would not have had the life and enjoyed all the things I have done in the last 20 years.

"I would not have got married, gone to university or had two wonderful boys.

"It is very hard to put into words and it is very brave of the donor family to give their consent. In such a very traumatic time for them and to do something so unselfish and think of someone else is truly remarkable and no amount of thanks will ever repay that.

"It has enabled me to have a life and give a life to my two boys, Jack and Liam."

John moved to Exeter with his wife shortly after the operation. As for the future he said he had no idea how long he would remain healthy. He said: "I was expecting five years and thought it was remarkable when I reached ten – and so did they.

"It has now been 24 years and I appreciate and bless every day. I hope it will be a lot longer but I will have to wait and see how long. I was one of the first in the country to have the heart and lung transplant so I have nothing really to compare it to.

"Life is uncertain. You never know if you or someone you love will in the future need a transplant to save their lives – so really think about being a donor. Give hope and life to the people that need it."

He said he had been following the campaign closely and paid tribute to the young CF patient Kirstie Mills whose plea for people to help give her a second chance of life inspired the campaign.

"She has done remarkably well and seems a very courageous girl and I am sure she would do very well with a transplant.

"Sadly there are more people waiting for donors than there are donors and that is why campaigns like this are so important. I don't play the lottery as in my opinion I have already won it. I just hope that my stories, and others like it, will encourage more people to sign up to be donors."

To find out more and to join the NHS Organ Donor Register: call 03001232323, go to www.organdonation.nhs.uk or text SAVE to 84118. If you sign up please give the marketing code for this campaign ECHO.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Monday, May 23, 2011

Rare diseases come with loneliness, isolation on top of the fear

This is such a rare disease that I never heard of Mounier-Kuhn syndrome until I read this article and I'm pleased to see that Shari Carter has taken the initiative to spread awareness about it.

By Nicole Brochu
South Florida Sun-Sentinel

Cancer. Lou Gehrig's disease. Alzheimer's.

The words carry with them a sense of dread, even doom. And yet there's hope and comfort to be found, too -- in the wealth of research being done, in the vast amounts of information available, and in the large numbers of those affected offering support.

Now say "Mounier-Kuhn syndrome" in a room filled only people who know what the words mean, and the space will echo with emptiness.

Fewer than 100 people on the globe have been diagnosed with this almost always fatal, congenital disease that enlarges the trachea and leads to chronic lung infections. Mounier-Kuhn syndrome is also known by the medical term tracheobronchmegaly.

Fort Lauderdale attorney Joe Carter was an unlucky member of this tiny community. When he was first diagnosed, in 1991, doctors told him he was one of only 70 known cases in the world.

But they couldn't tell him much more. Not how he got the disease, what his life expectancy was, or even who the other 69 people stricken with Mounier-Kuhn's were, and what happened to them.

Doctors had just one long-term option to offer: a double-lung transplant, a rare, tricky operation with no guarantees of success and few available donors. Also, a double-edged requirement that the patient be sick enough to warrant the procedure -- but strong enough to endure it.

The ugly odds caught up to Carter in March 2008, when he was admitted to Jackson Memorial Hospital in Miami with the last in a series of chronic lung infections. He was coughing up blood, barely able to stand, and struggling to catch his breath.

Less than a week later, Carter was dead. At just 38 years old, he left behind a 3-year-old boy, a pregnant wife carrying the son he'd never get a chance to meet, and no real understanding of the disease that took his life.

His widow, Shari Carter, was left reeling. "You can imagine -- forget it -- my whole life turned upside-down," she says now.

But along with the grief and loss, Shari Carter also found inspiration and hope. The Broward County legal community that considered Joe Carter a gifted attorney and favorite son rallied around his family and raised money for their needs.

Carter wanted to help families like hers, too, and bring some purpose to her husband's premature death. So that December, she established the Just Breathe Foundation, devoted to supporting families affected by the disease, raising awareness and promoting research to find a cure.

The charity, started in honor of a handsome, smiling father taken from his family too soon by a little-understood disease, struck a chord. In little more than two years, Just Breathe has been able to raise $30,000 toward its goals.

But here's the tricky part of fighting such a rare killer: Carter has not yet been able to distribute the money because she can't find an appropriate outlet. She knows of no scientists willing to study Mounier-Kuhn, and she's been unable to locate a family in need of financial support.

There aren't even any doctors who are considered experts in the condition.

"You're lucky if you find someone who knows what you're talking about," said Renee Blokzyl, of Toronto, Ontario, whose husband has been fighting Mounier-Kuhn's for the past 11 years. "My husband became an anomaly. You feel like you're having to educate the system."

In fact, it took Canadian doctors months to diagnose Eric Blokzyl with Mounier-Kuhn. He had such difficulty breathing, he couldn't make it from the car to the front door without feeling the urge to collapse. He lay on the couch, unable to do much, for six months.

After months of tests, misdiagnoses and a whole lot of shrugs from lung specialists who had never seen a chest X-ray quite like Blokzyl's, a Vancouver pathologist found the answer only after scanning the X-rays into an email and sending them to colleagues around the world.

"They told him he was number 83 to be diagnosed with Mounier-Kuhn in the world since 1946," said Renee Blokzyl.

The diagnosis meant that Blokzyl's trachea, like Carter's, had become so enlarged and diseased that it impaired his body's ability to clear mucus from his lungs. And like Carter, he will surely die from a resulting lung infection or heart failure. No one knows when, though doctors have taken clumsy stabs at an answer.

"They originally gave him five years to live without a double-lung transplant," Renee Blokzyl said. "They keep looking at him and saying, 'Why are you still here?'"

In the vacuum of real answers is a palpable sense of fear, loneliness, frustration and a desire to fit in, even among other lung disorder patients.

"You're always a curiosity for other people," said 54-year-old Eric Blokzyl,who, with his lungs working at 30 percent capacity, is still a senior manager in the Canadian railway system. "We're frustrated with the medical field because you think you're making headway and something happens and you get blank looks, and you feel like you're starting from square one again."

So little is known about Mounier-Kuhn that the Blokzyls are convinced there are "thousands" of other sufferers who have been misdiagnosed with other lung disorders like COPD.

But without more documented cases, researchers have little incentive to study the disorder. It is a tragic predicament, made all the more isolating for the sparse community of sufferers available to support one another.

That's why Renee Blokzyl and Shari Carter are grateful. The two connected through the Just Breathe website, and they have found solace in long phone conversations spent swapping stories, sharing strategies and lending an understanding ear.

"Just being able to talk to another family, that's just huge, the support end of it," Shari Carter said. "People always say, 'I know what you're going through,' but they don't, they can't." She does know what Blokzyl is suffering, she said, "and it's awful."

There is strength in numbers, it seems, even in the small world of Mounier-Kuhn.

Watch a video with Shari Carter

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Friday, May 20, 2011

Toronto heart/lung recipient will jump from a plane

I've met both Dana Trude and Andrea Clegg. Where they get the strength and energy to "give back" in so many ways is beyond me. Dana was in bad shape when I met her prior to her heart/lung transplant and here she is now competing in road races and promoting organ donation awareness in a huge way. I just met Andrea last week where she spoke to a packed audience about her experience with a Left Ventricular Assist Device (LVAD) and subsequent heart transplant a few months ago. Since her transplant she has done amazing work in organizing a group to promote organ donation and fundraising activities. See the links below.

Dana Trude

By Johanna Weidner Waterloo Region Record
KITCHENER, Ontario — Heart and lung transplant recipient Dana Trude cheered while crossing the finish line after walking a half marathon.

“Then when I did that, a bunch of people cheered me on,” said the Kitchener woman. “It was really cool.”

Feeling healthy and fit enough to join last weekend’s Toronto marathon is a big accomplishment for Trude. Just over four years ago, she desperately needed a new heart and lungs when her organs failed.

While the transplant gave her a new chance at life, she struggled with complications such as diabetes, chronic rejection and liver and kidney trouble. She may need another lung transplant down the road.

But Trude, who turns 50 in July, keeps going and discovered a love for walking. She did a 10-kilometer fundraising walk for the Canadian Diabetes Association in Hawaii last December — also marking the fourth anniversary of her transplant.

“I feel fabulous. I actually feel fabulous. The walking really helps,” Trude said. “I have to have a goal, though.”

Her next goal is a bit more unusual. Trude will jump out of a plane as part of a fundraiser being organized by Cambridge heart transplant recipient Andrea Clegg and her mother Carol Morningstar.

Carol Morningstar and Andrea Clegg

Thinking about all the life-saving care Clegg got at Toronto General Hospital, they wanted to raise money for its transplant unit. Clegg, who got a new heart late last year, said she and her mother had the same idea: “Let’s do something big.”

People will pay for their jump, which means the hospital will benefit from all donations to the June 18 event at the Dunnville airport. Money raised at the barbecue (at the airport) will go toward Life Donation Awareness Association which Clegg founded.

Raising awareness is important for Clegg and the others joining the event. They are all people who have been touched by a transplant or donated their loved one’s organs and tissues.

Clegg wants people to know what a difference an organ donation can make, as well as showing patients that life carries on after a transplant.

“You can still have a life with organ donation,” said Clegg, 27.

More about the skydiving event
SATURDAY JUNE 18 AT THE NIAGARA SKYDIVE CENTRE
536 Regional Road, DUNNVILLE ONTARIO
(www.niagaraskydive.com)
www.tgwhf.ca/sites/testyourlimits/skydivingforandrea/
The all-day event will include activities for families, a BBQ, entertainment, and of course, information on becoming a registered organ and tissue donor.

Read Andrea Clegg's blog: http://stayingtruetomyheart.blogspot.com/
Life Donation Awareness Association

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Body reprogrammed to accept donor organ as its own

The body's natural defences can be "re-educated" to stop them attacking organ transplants and remove the need for patients to take immune system suppressing drugs for life, claim scientists.

By Richard Alleyne, Science Correspondent The Telegraph

British-based researchers have discovered a way to reprogramme immune system cells so that they think the donated organ is a natural part of the recipient's body.

Not only will the development avoid patients having to take three different types of costly drugs every day of their life, it will also mean the donated organs lasts indefinitely.

Dr Pervinder Sagoo, co-author at King's College London, said: "We hope this is the holy grail that means that the recipient is completely tolerant to the transplanted organ for the rest of their life."

Currently patients must take around three immunosuppressant drugs a day to prevent a new organ from being rejected after transplantation.

However, these drugs suppress the entire immune system, leaving the patient susceptible to infections and tumours.

Transplanted organs are also put under pressure and often do not last longer than 10 years.

The new approach involves re-educating the immune system so that the body sees the organ as a natural part of the body.

The immune system carries on working in exactly the same way but because it does not see the new tissue as alien, leaves it alone.

The technique works by mixing the immune cells of the donor and the recipient in the laboratory to produce a kind of hybrid which is then copied millions of times.

These new cells of then injected into the recipient – spreading around the body and re-educating the immune system for life.

Ultimately this approach could extend the life of a transplanted organ and in turn, could alleviate the organ shortage problem.

The technique has already been used in animals and clinical human trials start at the end of the year.
Scientists hope it could be used in earnest within a decade.

Professor Robert Lechler, Vice-Principal for Health at King's, said: "This study is a promising step forward that could lead to dramatic advances in preventing organ rejection and improving the quality of life of transplant patients."

Dr Shannon Amoils, Research Advisor at the British Heart Foundation, which part-funded both studies, said: "If the techniques used in these studies can be transferred to the clinic it could signal a move to replace long term use of immune-suppressing drugs.

"This would be a huge step forward for transplantation, more than four decades since the revolutionary treatment began."

The study was published in the journal Science Translational Medicine


“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Thursday, May 19, 2011

NKF suspends U.S. Transplant Games in 2012

I've received many inquiries about the U.S. Transplant Games in 2012 and this news must be disappointing for those who were planning to take part. I'm not sure what's behind the decision but hopefully a resolution will be found to ensure the games continue.

The National Kidney Foundation will not be hosting the U.S. Transplant Games in 2012.

Nephrology News & Issues

"For 20 years the NKF U.S. Transplant Games have educated the public about the life-saving power of organ donation and dramatically demonstrated that those with transplants can and do lead normal and active lives," said NKF CEO John Davis. "But the Games represent a multi-million dollar expense for the foundation that also requires a significant commitment of staff resources."

"Now when most Americans view transplantation as almost routine surgery that restores life, we will re-examine the format and financial structure of the Games, to achieve maximum impact and to ensure sustainability going forward. As always, we will work with a range of constituents and supporters to accomplish this."

Since 1990, the biennial Olympic-style event has served to showcase the success of transplantation, promote health and fitness for transplant recipients and recognize and honor donor families and living donors.

"We want to thank the thousands of transplant athletes, living donors, donor families, medical professionals, supportive family members and volunteers who have worked so hard to make the NKF U.S. Transplant Games so successful over the years," says NKF Senior Vice President for Programs Gigi Politoski.

"Special thanks to the dozens of corporate sponsors for their support of the Games and our athletes. We could not have conducted the U.S. Transplant Games for 20 years without their generosity and enthusiasm and look forward to their continuing participation and partnership as we explore ways to restructure the Games."
recipients, and donor families can also access the NKF Cares patient information help line.

The NKF encourages people to send comments and suggestions to tgames@kidney.org

"For 20 years the NKF U.S. Transplant Games have educated the public about the life-saving power of organ donation and dramatically demonstrated that those with transplants can and do lead normal and active lives," said NKF CEO John Davis. "But the Games represent a multi-million dollar expense for the foundation that also requires a significant commitment of staff resources."

"Now when most Americans view transplantation as almost routine surgery that restores life, we will re-examine the format and financial structure of the Games, to achieve maximum impact and to ensure sustainability going forward. As always, we will work with a range of constituents and supporters to accomplish this."

Since 1990, the biennial Olympic-style event has served to showcase the success of transplantation, promote health and fitness for transplant recipients and recognize and honor donor families and living donors.

"We want to thank the thousands of transplant athletes, living donors, donor families, medical professionals, supportive family members and volunteers who have worked so hard to make the NKF U.S. Transplant Games so successful over the years," says NKF Senior Vice President for Programs Gigi Politoski.

"Special thanks to the dozens of corporate sponsors for their support of the Games and our athletes. We could not have conducted the U.S. Transplant Games for 20 years without their generosity and enthusiasm and look forward to their continuing participation and partnership as we explore ways to restructure the Games."
recipients, and donor families can also access the NKF Cares patient information help line.

The NKF encourages people to send comments and suggestions to tgames@kidney.org


“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

World's Smallest Heart Pump Available at the CS Medical Center

A new state of the art piece of technology is not only enhancing modern medicine in College Station. It is also changing the recovery process for heart surgery patients. And the College Station Medical Center is the first hospital in the Brazos Valley to unveil what is being called: "The world's smallest heart pump."

KBTX.com
Thirteen years ago, Gwen Sweatt began having complications with her lungs.

"Last August I kind of took a plunge," Sweatt explained.

Sweatt was diagnosed with: Idiopathic Pulmonary Fibrosis, or IPF.

"They say it's fatal," said Sweatt. "Thirteen years ago doctors gave me two-to-five years."

IPF is a disease of inflammation that results in scarring, or fibrosis, of the lungs. Doctors say, over time, the fibrosis can build up to the point where the lungs are unable to provide oxygen to the tissues of the body. Doctors said Sweatt needed a lung transplant; however, in order to get on that list, she needed a healthier heart. For years, cardiac patients typically had only two options to treat their blocked arteries and restore blood flow to the heart: either open heart surgery or angioplasty.

"It became obvious that her heart had enough problems that she probably wouldn't have made it through a lung transplant," said Cardiologist, Marcel LeChin.

Running out of options, doctors at the College Station Medical Center suggested Sweatt test out the: Impella 2.5. It is called the Impella 2.5 because it is capable of pumping 2.5 liters of blood per minute to support the heart during high risk procedures. It supports a patient's cardiac function, while the cardiac surgeon performs an angioplasty.

"It just pumps blood out of the heart and into the general circulation and it can generating about three times as much blood flow as a balloon pump can," LeChin said.

Doctors say it also reduces the risk of death during surgery.

"In the cath-lab we perform interventions where we do balloon procedures and stints and in some cases they are very high risk because their heart is very weak or because during the procedure you are intervening in a vessel that is so big that the whole heart can actually shut down during the procedure," said LeChin.

Understanding the risky procedure, Sweatt says she didn't think twice.
She put her life in the hands of Dr. LeChin and his team inside the cath-lab. Three days after surgery, Sweatt was resilient and walking.

"I think that I have a little bit more energy already," Sweatt said.

"In the past, heart transplantation had been the only choice to help, but now with these new devices you are going to be able to take care of patients longer and help them even though they are terminal," LeChin said.

Contrary to her life expectancy by Houston doctors -- Sweatt is living proof she has beat the odds.

"I like living, I've got great grand kids and family," Sweatt added.

"You are going to be able to start seeing more and more people able to survive heart failure, which is the number one most common cardiovascular problem these days," explained LeChin. "It's really becoming a real burden on the health system, and I think these type of technologies are going to help take better care of them," LeChin said.

    Symptoms of IPF:

  • Chest pain (occasionally)
  • Cough (usually dry)
  • Decreased tolerance for activity
  • Shortness of breath during activity (this symptom lasts for months or years, and over time may also occur when at rest)

To learn more about IPF and the Impella 2.5, click on the links below.
IPF - National Heart Lung and Blood Institute
Impella 2.5 - Abiomed


“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Wednesday, May 18, 2011

Memorial service set for teen who died while awaiting heart transplant

Winnipeg Free Press


A memorial service will be held in the city next Monday for a former Winnipeg teen who died in a Montreal hospital while waiting for a heart transplant.
The service for 19-year-old Jessica Bondar is scheduled for 6:30 p.m. in The Church of Jesus Christ for Latter Day Saints, at 45 Dalhousie Dr.
The St. James Collegiate graduate had battled serious health problems for two years after contracting the influenza A virus and subsequently suffering heart failure.
She had been staying part-time at a hospital in Montreal, near where some of her family members now live, waiting for a transplant when she had a stroke last month and died.
Her case hit the headlines again this spring when her aunt, Sheryl Matheson, was charged with allegedly stealing thousands of dollars from a trust fund set up to help cover some of her medical costs.
Matheson’s court case has been remanded to June 6.


“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Monday, May 16, 2011

Social media sign-up campaign brings a welcome boost to B.C. organ-donor numbers

B.C. Transplant's leadership in promoting organ and tissue donation awareness is encouraging and their innovative ideas are an inspiration to those of us seeking ways to improve the rate of organ and tissue donation everywhere.

VANCOUVER — Cyrus McEachern and his friend Eva Markvoort, a double lung transplant recipient, transformed a single photo into a social media campaign that more than doubled online donor registration rates at B.C. Transplant. (see also http://65redroses.livejournal.com/ a wonderful journal where friends continue Eva's legacy)


B.C. Transplant campaign photographer Cyrus McEachern, with his illustrated photo of the late Eva Markvoort in Vancouver on May 11, 2011. The photo-illustration is being used in the current transplant campaign.
Photograph by: Ian Smith, Vancouver Sun

BY STEPHANIE LAW, VANCOUVER SUN

Markvoort died in March of last year, at the age of 25, while waiting for a second lung transplant. She didn’t live to see the success of her work.

“She said she wasn’t ready to go because she hadn’t made enough of an impact,” said McEachern, who spent a lot of time with Markvoort during her final few months.

“But the results of the campaign are an example of how her message and her inspiration continues to benefit the transplant community,”

In 2010, about 173 donors registered online each week. But that weekly rate jumped to about 454 in the first week of the campaign, called “Live life. Pass it on,” which launched April 18.

One organ donor can potentially save seven lives by donating their heart, liver, pancreas, two kidneys and two lungs. You can register to donate all of your organs, some of them, or none of them, but more than three million British Columbians have yet to register their decision.

Less than one per cent of deaths can result in potential organ donation, said Allison Colina, B.C. Transplant spokeswoman.

“The increase [in online registration] is great, but we want to see the numbers grow,” she said.

“For most of us, we register our decision and go on with our lives, but these numbers mean a lot to those on the wait-list.”

There are about 400 people waiting for transplants in B.C. On average, they wait from three months for a liver to 63 months for an adult kidney, according to B.C. Transplant statistics from 2010.

The effects of the online campaign have already started to fade. There were 274 registrations recorded in the first week of May.

The campaign uses Facebook to promote online donor registration. It also includes advertisements on public transit and on television that feature photos developed by MacEachern and Markvoort.

The campaign started when MacEachern, a University of B.C. medical student, and Markvoort, who had already had one lung transplant, won a cardiology-themed art contest. They entered a photo of Markvoort with a human heart painted on her chest.

MacEachern had a eureka moment while sitting at the beach a year later.

“I thought it’d be cool to round up transplant recipients and Eva could paint on them,” said MacEachern.

They took seven photos altogether. Each model had the organ they received painted on to their bodies. They then took them to B.C. Transplant to start the campaign.

To make the campaign happen, B.C. Transplant sought the help of Rethink, a Vancouver-based ideas and advertising agency.

Ailsa Brown, partner and group account director at Rethink, headed the project. She assigned the work to Jordan Cohen and Leia Rogers.

“They both had personal stories related to organ donation within their immediate families,” she said.

Cohen and Rogers put together the photos and ads, titled the campaign, and developed a Facebook application that allows registered organ donors to tag their profile pictures with the line, “I gave my heart.”

Project director Brown said the tag line is a play on words.

“When you make that commitment to sign up, you really are giving your heart,” she said. “Not necessarily the organ itself, but your gift of life and your soul.”

Amanda Poch was one of the models in the campaign. She received a liver transplant five years ago, when she was 20.

Poch said she is excited about the results of the campaign, but she urges more people to register.

“There are over 350 people in this province waiting for their chance at life, how can you deny them that?” she said. “It’s in everyone’s best interest to register as a donor — just on the off chance you might need one or give one.”

MacEachern agreed with Poch’s sentiments and was equally amazed by the outcome.

“It makes my eyes water up a little bit,” he said on hearing about the campaign’s success. “Even getting a few more people to register could mean saving dozens of peoples lives.”

Markvoort was the subject of a 2009 documentary, 65_Redroses, a triple-award winner at the Vancouver International Film Festival.

© Copyright (c) The Victoria Times Colonist

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Sunday, May 15, 2011

Aided by community's donations, man gets lung transplant in Tampa

It is gratifying to see such rapid and generous response from the public when appeals go out for financial help with transplant expenses. Enock Mezilas' story is heartwarming.

His family couldn't afford the $10,000 needed to save his life until the community rallied in support. Within a week of his story appearing in the St. Petersburg Times, tbt* and on tampabay.com, the newspapers' website, more than $93,000 poured into a fund for his transplant-related expenses.

By Letitia Stein, Times Staff Writer
TAMPA — When Enock Mezilas received the news, he hugged and kissed his mother. He begged her not to cry. The 20-year-old calmly anticipated a nine-hour surgery that would begin late Friday night at Tampa General Hospital. He was ready for his lung transplant, his only chance to live.

Not long ago, this moment seemed impossibly out of reach.

His family couldn't afford the $10,000 needed to save his life until the community rallied in support. Within a week of his story appearing in the St. Petersburg Times, tbt* and on tampabay.com, the newspapers' website, more than $93,000 poured into a fund for his transplant-related expenses.

It was more than enough to put Mezilas on the wait list for a lung donor. Yet twice last week, just as he thought he had a match, transplants fell through at the last minute. Then late Friday, lungs from an out-of-state donor received final approval.

As his surgery began at 10:30 p.m., his mother, Ilna Pierre, began her vigil in the hospital's waiting room. Between calls to her husband, back home in Fort Lauderdale caring for their two younger children, she prayed unceasingly.

"My heart was beating so fast, she said later. "I didn't sleep all night."

At 7:30 a.m. Saturday, Mezilas left the operating room with his new lungs.

His condition remained critical Saturday, which was to be expected, said hospital spokesman John Dunn. His blood pressure had been up and down all day, said his mother, who had not been able to talk to him.

But she was hopeful that the worst of their long ordeal was over.

Mezilas' parents — his mother is a home health aide, his father works in maintenance at an assisted living facility — have health insurance that covered their son's transplant surgery. But the co-pay for the anti-rejection drugs, which he must take for the rest of his life, was so high they needed additional financial assistance before he could qualify for the surgery.

Mezilas couldn't get public health benefits because he had his green card for only one year. His parents, originally from Haiti, immigrated legally from the Bahamas when he was 9. But until he became sick — his lungs were irreparably damaged by severe acid reflux that was misdiagnosed for years — they didn't realize that their child needed a green card to qualify for government relief.

They ended up in Tampa because the family's insurance wouldn't cover the surgery at the transplant center closest to their South Florida home. It did provide benefits at the Mayo Clinic in Jacksonville, where he came close to getting new lungs, but the donor wasn't an acceptable match. By the time he got to Tampa, he was so sick that doctors said he would die during this hospital visit without a transplant.

No one knows how high his medical expenses could climb. Just the co-pay for his anti-rejection drugs could run $300 to $600 each month. His mother will have to live with him in Tampa for the next three months, and then Mezilas must return to Tampa General every four weeks for the first year.

The family thanked the hundreds of people who donated to them through the National Transplant Assistance Fund. The nonprofit organization will administer the money to ensure it is used for transplant-related expenses, generally to be paid directly to the service providers.

Despite the severity of his condition, Mezilas managed recently to earn his high school diploma, mostly by studying at home. He hopes to become a pharmacist some day.

But for now, his mother said, the goals are far more immediate. Saturday night, she said her husband had just arrived in Tampa, and they were looking forward to seeing their son open his eyes.

Copyright 2011 St. Petersburg Times
Read more & photo: Tampabay.com

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at organdonor.gov (Go to top right to select your state)
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Friday, May 13, 2011

Secondhand Smoke May Increase Risk for Nicotine Addiction

Evidence continues to support the dangers of second-hand smoke and hopefully more jurisdictions will join the move to enact smoking bans in public places.

At my transplant center I met many patients on the waiting list for a lung transplant due to COPD. I remember them saying to me "why did I ever smoke?" but, to a person, they had no problem quitting cold turkey when told they would die without a transplant and had to be smoke-free in order to get one.

In addition to the lung disease, heart disease and other debilitating effects that smokers bring upon themselves, The Centers for Disease Control and Prevention (CDC) reports that almost 50,000 deaths per year can be attributed to secondhand smoke. Secondhand smoke causes heart disease and lung cancer in non-smoking adults. In children, secondhand smoke causes many serious health conditions, including sudden infant death syndrome, respiratory infections, more severe asthma, low infant birth weight, and chronic middle ear infections.





Megan Brooks Medscape Pulmonary Medicine

May 10, 2011 — Moderate secondhand smoke exposure results in occupancy of brain α4 β2 nicotinic acetylcholine receptors (nAChRs), which may increase vulnerability to smoking and nicotine addiction, new research shows.

Study investigators found that after 1 hour of exposure to secondhand smoke in an enclosed space, a substantial amount of nicotine reaches the brains of nonsmokers and binds to receptors that are normally targeted by direct exposure to tobacco smoke — a finding that has important implications.

"We know that secondhand smoke exposure results in exposed individuals being more likely to become smokers and to have a harder time quitting smoking [if they are already smokers]," first author Arthur L. Brody, MD, from the Greater Los Angeles Veterans Affairs Healthcare System and the University of California, Los Angeles, told Medscape Medical News.

"Our study presents further evidence for the need to limit exposure to secondhand smoke in vulnerable individuals," he added.

The study was published online May 2 in the Archives of General Psychiatry.

Priming the Brain

In laboratory rats, long-term exposure to cigarette smoke leads to nicotine dependence and an upregulation of nAChR levels in the brain. Yet, "brain nAChR occupancy from secondhand smoke exposure has not yet (to our knowledge) been demonstrated," the researchers write.

In the study, 11 moderately dependent cigarette smokers and 12 nonsmokers underwent positron emission tomography with the radioligand 2-(18)F-FA-85380, which permits visualization of brain α4 β2 nAChRs, one of the most abundant nAChR subtypes in the brain.

Each participant underwent 2 scanning sessions during which they sat in the passenger seat of a car for 1 hour and were exposed to moderate secondhand smoke or to no secondhand smoke.

During the smoke exposure condition, the mean air carbon monoxide level was 7.4 parts per million (ppm) — significantly higher (P < .001) than during the control condition (0.5 ppm).

For the entire group (smokers and nonsmokers), moderate secondhand smoke exposure led to an average 19% brain α4 β2 nAChR occupancy, the researchers say.

Evidence Supports Public Smoking Ban

"These results show that even limited secondhand smoke exposure delivers enough nicotine to the brain to alter its function," Nora D. Volkow, MD, director of the National Institute on Drug Abuse, who was not involved in the study, noted in a statement.

"Chronic or severe exposure could result in even higher brain nicotine levels, which may explain why secondhand smoke exposure increases vulnerability to nicotine addiction," Dr. Volkow added.

The researchers also found that smokers had a 23% increase, on average, in craving with secondhand smoke exposure, and they saw a correlation between nAChR occupancy and craving alleviation with subsequent cigarette smoking. This finding suggests that moderate secondhand smoke exposure delivers a priming dose of nicotine to the brain that contributes to continued cigarette use in smokers, they say.

"This study," Dr. Brody said, "gives concrete evidence to support policies that ban smoking in public places, particularly enclosed spaces and around children.''

This study was supported in part by grants from the Tobacco-Related Disease Research Program and the National Institute on Drug Abuse. The authors have disclosed no relevant financial relationships.

Arch Gen Psych. Published online May 2, 2011.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
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 or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Wednesday, May 11, 2011

IPF - a killer baffling doctors. And the only warning sign is feeling out of breath...

Having been diagnosed with IPF (Idopathic Pulmonary Fibrosis) myself I can emphasize with Lawrence Matz as he goes through the worry and apprehension of knowing that without a lung transplant the future is very bleak. Nine years following my transplant I feel great and don't think about breathing but I can tell you that when you have IPF that's all you think about. Prior to receiving my new lung I couldn't even bend over to tie my shoes or plug a cord into a wall outlet.




Lawrence Matz has idiopathic pulmonary fibrosis (IPF). Even the exertion of shaving is enough to leave him gasping for breath
IPF is responsible for the deaths of around 5,000 people annually, claiming more lives than leukaemia or ovarian cancer

By LUCY ELKINS Dailymail.co.uk

When businessman Lawrence Matz started feeling breathless, he put it down to cutting back on his visits to the gym.

A consultant reassured him that by resuming his fitness regime — three visits a week to the gym and weekends on the golf course — he would soon be back to normal.

But the breathlessness got worse — walking around the house left him panting. So two months later, Lawrence, 57, went to his GP. He diagnosed asthma and gave him an inhaler. It did no good.

Finally, three months later, he was referred to a chest specialist. An X-ray revealed the cause of his problems: Lawrence has idiopathic pulmonary fibrosis (IPF), a condition that leads to thickening and scarring of the lungs, making it harder and harder to breathe.

Until recently, the condition was relatively rare, but a report last week, published in the medical journal Thorax, said the numbers affected by it are increasing.

The amount of new cases diagnosed each year in this country shot up by over a third between 2000 and 2008, to 15,000 sufferers.

IPF is responsible for the deaths of around 5,000 people annually, claiming more lives than leukaemia or ovarian cancer.

The disease typically progresses quickly and more than half of those who develop it die within three years of their diagnosis.

For Lawrence, the disease has brought a brutal change to his life. Just two years ago, he put in long hours at his fashion business. Now even the exertion of shaving is enough to leave him gasping for breath.

‘I have a wonderful wife and family, but my quality of life is not very good and if I was an animal they would put me down,’ he says bleakly. ‘It’s all been such a huge shock.’

What is alarming about the condition is that doctors have no idea what causes it. Each year, thousands of previously healthy individuals like Lawrence are developing this illness for which sadly there is no cure.

Professor Neil Barnes, consultant respiratory physician at Barts And The London NHS Trust, says: ‘It is more common in men than women, but no one knows why and in around 4 per cent of cases it runs in families — so there is a genetic link, but only a very mild one.

‘Smokers are slightly more at risk and have a 30 per cent increased chance of getting it.

‘At one point it was thought that antidepressants might be to blame, but that was discounted. Another theory was it might be related to working in a dusty atmosphere. The only thing we know for sure is that it becomes more common the older you are.’

PF begins with damage to the alveoli — the tiny air sacs within the lungs. Normally, the oxygen that you breathe in passes through the alveoli walls into tiny blood vessels and is then carried away to be used around the body.

However, with IPF, the alveoli become inflamed. As the body tries to heal the damage, the alveoli walls and surrounding lung tissue stiffen and become clogged with scar tissue. As a result, not as much oxygen can be absorbed into the blood. Patients become breathless with minimal exertion. Some may also develop a nagging cough.

The condition can progress slowly in some and rapidly in others, but either way little can be done to help.

‘Sometimes steroids and immunosuppressants are given to try to reduce the inflammation, but the evidence that these work for this condition is poor,’ says Professor Barnes.

‘The normal course for these patients is they end up needing to be on oxygen either all day or when they move around, and some may go on to require a lung transplant. If they don’t have a lung transplant, more than half of those diagnosed die within three years.

‘Around 80 per cent of those who get a lung transplant end up living beyond three years.’

As it is only just becoming more common, not all GPs are used to spotting the condition either. ‘For a GP to diagnose IPF is hard,’ says Dr Kevin Gruffydd-Jones, the Royal College of GPs spokesman on respiratory issues.

‘If a patient comes to see them and complains of shortness of breath, there is so much else it could be — asthma or bronchitis for example. They need to be referred to a specialist and to have an x-ray to make a proper diagnosis.’

Professor Barnes says: ‘It is not uncommon for it to be picked up by chance when someone comes in for investigation into another condition such as a heart problem and then an X-ray shows the tell-tale scarring on the lungs.’

Lawrence, from Finchley, North London, who is married to Gloria and has two grown-up step-children, saw three medics before his condition was diagnosed.

‘In June 2009, I went to a friend’s 50th birthday in Israel and noticed I was getting breathless even when I walked the 20 yards from the pool to my room,’ he says.

‘I hadn’t been going to the gym as much as normal and had been having the odd puff on a cigarette when I was out with friends — and initially put it down to that. I stopped smoking, but things didn’t improve.

'I went to see a heart specialist who told me I was fine and that it was a fitness issue. But I was still huffing and puffing, so in August, I went to my GP who said he thought I had asthma, and gave me an inhaler.

‘That made no difference, so in October, I decided to see a private GP and she sent me for a chest X-ray that day.’

The next day, the doctor broke the news Lawrence had ‘something on his lungs’ and referred him to a private chest specialist.

‘When I went to see the specialist and he said I had idiopathic pulmonary fibrosis, for a second I thought: “Thank God it’s not cancer”,’ says Lawrence.

‘Then he told me there was no cure. When I got home, me and my wife Googled the condition and I soon realised that in a way, what I have is worse than cancer. There is nothing they can do for my condition.’

Lawrence was put on to 15 pills a day — a mixture of steroids and immune suppressants.

‘They couldn’t really give me a prognosis,’ he says. ‘For a year, I was stable — there was no way I could play tennis, but I could get round the golf course and I still went to work. Then in November, I started to go downhill and in January this year my condition nose-dived.

‘Now, any exertion, even talking, can make me run out of breath. I am on an oxygen machine most of the time, even when I sleep. When I go out, I have portable canisters I can take with me.

‘For Gloria, it has been a terrible shock. She’s used to me being so fit and strong and now I have to rely on her to help me all the time.’

NICE is assessing a drug called pirfenidone as a possible treatment. This helps reduce inflammation and scar tissue in the lungs.

Lawrence, meanwhile, is hoping he is suitable for a lung transplant.

‘If they say no, then I may go to the U.S. to see if I can get one there,’ he says. ‘I try not to look ahead. In the early stages, I kept thinking: “Tomorrow I will wake up and feel better.” Now I know that is not going to happen.’

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