Tuesday, June 30, 2009

A life interrupted:
Moorhead, North Dakota nurse waits for double lung transplant

I have a very good friend who will be celebrating the 7 year anniversary of her double-lung transplant this summer. She had the same diseases as Holly Bergo who is profiled here. Holly has Lymphangioleiomyomatosis (LAM), a progressive disease that strikes women in the prime of their lives. It unleashes abnormal muscle cells on patients’ lung, where they form cysts and bore holes in healthy tissue. My friend's life has been transformed by her transplant and she is now full of life with boundless energy. Hopefully Holly Bergo will experience the same "gift of life" when she receives her transplant. You can help with her medical and living expenses by clicking on the links below. Merv.

By Mila Koumpilova INFORUM

Holly Bergo’s new pulmonologist had one word for her after poring over her CT scan: impressive.

He had never seen lungs so ravaged by illness, with an owner who had clung so gamely to her lifestyle.

That was in 2007, and for more than a year, Bergo kept going: She remained the roving public health nurse known among clients as “Jolly Holly” and the former cheerleader her many friends deemed a “spiritual picker-upper.”

But over the past year, a rare, incurable lung disease has slowly dismantled that life. These days, Bergo is mostly confined to her Moorhead apartment, with only two tasks: Wait for a phone call from the Mayo Clinic summoning her for a double lung transplant surgery and keep breathing.

Well, there’s also comforting the occasional teary friend and joking about meeting a cute doctor at Mayo.

“Holly hasn’t lost her humility and her grace and her humor and her beautiful, outgoing personality,” said Michelle Eldredge, who along with other friends is organizing a July benefit for Bergo.

Not breathing easy

For years, Bergo thought she had asthma. She was misdiagnosed after shortness of breath started hounding her constantly. The meds seemed to help.

Shortly after, she went to get a second bachelor’s in nursing at North Dakota State University, where she’d once been a Bison football cheerleader. When she graduated, she got a job at Cass County Public Health. Climbing the two flights of stairs to her office became an increasingly breath-robbing ordeal.

She kept telling herself she needed to get in better shape. But the breaks she had to take after the first flight of stairs grew longer.

In spring 2007, her doctor ordered a CT scan and, concerned, sent her to a MeritCare pulmonologist. He examined her CT scan – her lungs pocked by cysts like honeycomb, down to 50 percent of their function – and sprung to action. He lined up oxygen tanks and an appointment at Mayo.

Bergo had lymphangioleio-myomatosis, a progressive disease that strikes women in the prime of their lives. It unleashes abnormal muscle cells on patients’ lung, where they form cysts and bore holes in healthy tissue.

The pulmonologist told her there’s no cure, and Bergo’s illness was too far along to enroll in a trial for promising new medication. She would likely need a lung transplant.

“Here’s me, 36, single and looking, wanting to have children, barely two years into my dream job and thinking my asthma is getting worse,” she recalled.

Bergo spent that Friday crying. She was one of only 1,500 women diagnosed with the disease. Experts believe as many as 250,000 go undiagnosed or, like Bergo, misdiagnosed, blithely planning out the rest of their lives.

“That first day was devastating,” she said. “That weekend I was in shock. On Monday, I decided I had to fight.”

Holly’s wait

Bergo left her oxygen tank in her car before she visited the apartments of clients, some of whom used oxygen themselves. She hid her illness. She didn’t want it to take the fun out of Jolly Holly.

She joked about her ordeal to friends. Nadine Perkins, Bergo’s nurse coordinator at Mayo, remembers her laughing and snapping pictures of staff when she came in for her transplant evaluation.

“At first I was like, ‘Why me?’ ” Bergo says. “Then I decided, ‘Why not me?’ There’s a reason God is making me go through this.”

But the disease was on the march. Bergo spent Christmas and Valentine’s Day after her diagnosis in the hospital with a collapsed lung. That spring, when she could no longer part with her oxygen for long, she had to come clean to her clients.

In the summer, her parents, Bruce and Roxy, moved to the area to help care for her. In the fall, as taking a shower became a strenuous exertion, she had to concede she couldn’t continue on her job.

“Pieces of her life were slowly being taken away,” Eldredge said. “Breathing is her job right now.”

As Bergo climbed the lung transplant list at Mayo, she retreated into her apartment. With a wheelchair and a change of oxygen tanks needed, she said, “It takes a village to bring me out.”

She keeps her cell phone close by her side. She can get the call from Mayo any day now. She has a bag packed and an arrangement to fly to Rochester, Minn., where she needs to get within hours of receiving the call.

There’s no telling how long the wait is going to be: She needs a donor who shares her petite frame and her rare B positive blood type. Her heart is already breaking for the family of the donor who’ll give her a chance to reclaim her life.

Her lung function is down to 16 percent.

She fears she might not survive the five-hour surgery or that her body will reject her new lungs. She worries that eventually her disease might attack her new lungs. But most of the time, she’s strangely calm. All she has to do is breathe.

In the meantime, her friends have rallied around her. They’ve cut her hair for free, dispatched a massage therapist to her apartment and planned a July 31 dinner and auction at the Fargo Holiday Inn.

“It’s amazing how many people she’s touched,” says Bergo’s friend and former colleague Karen Irey, who called her “a good spiritual picker-upper.” “It’s all coming back to her now in full force.”

Stephen Cassivi, Mayo’s director of lung transplantation, says if a set of lungs becomes available on time, a patient like Bergo can make a real comeback, starting with the most basic activity: “Breathing is one of those primordial acts of life we take for granted, but you really notice it when you have to work at it.”

Bergo looks forward to taking a shower without having to sit down several times, keeping up with her nephews and getting her job back: “I will reinvent myself and be better and pay it forward.”

How to help

To help with Holly Bergo’s medical and living expenses, visit http://www.transplants.org, click on “Patients we help” and type her name in the search box.

“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 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 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

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation

Monday, June 29, 2009

URGENT: Your Opportunity to Support Organ Donor Designation and Preservation of Voluntary Contributions in California

I have a friend in California, a lung transplant recipient, who is an ambassador for organ donation awareness there. She asked me to post the following for your consideration and I'm very pleased to do so. Action is required today to show your support for Assembly Bill 1132. Thanks. Merv.

Dear Donate Life Community:

Please help us pass this important legislation in California, which is set for a hearing on Tuesday, June 30!

Donate Life California, administrator of the state-authorized organ and tissue donor registry, is sponsoring Assembly Bill 1132, which would increase organ and tissue donor registration by amending existing law to allow Californians an opportunity to be directed to the Donate Life California webpage to register as donors at the confirmation of page of their annual vehicle registration form.

In addition, the bill would allow the DMV to keep a maximum of 5% of the voluntary contributions made by DMV customers to cover administrative costs not already funded by appropriations from the state’s general fund. As a result, the vast majority of these voluntary contributions would be preserved to fund organ donation education in high school health classes among other essential public health education initiatives

Please personalize the letter at this link and email to donatelifeca.org or fax to 916-880-3510.

Thank you for supporting our lifesaving mission!

Thank you for supporting our lifesaving mission!

Bryan

_______________________

Bryan Stewart
Vice President of Communications, OneLegacy
President, Donate Life California
Chairman, Donate Life Rose Parade Float Committee
221 South Figueroa Street, Suite 500
Los Angeles, CA 90012
(213) 229-5600

(213) 229-5650 direct office
(213) 633-1650 direct fax
(213) 400-8304 cell


“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 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 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

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation

Sunday, June 28, 2009

Michael Jackson may have died from lung disorder

By Theresa Tanoos eXaminer.com

The author of a biography on Michael Jackson said that the superstar had a potentially fatal lung condition, which left him in desperate need of an emergency transplant operation to save his life. According to Ian Halperin, who completed a book about Jackson’s life late last year, the pop icon suffered from an Alpha-1 antitrypsin deficiency, as well as emphysema and gastrointestinal bleeding.

“He’s had it for years, but it’s gotten worse,” Halperin told In Touch magazine. “He needs a lung transplant, but may be too weak to go through with it.” Halperin also said that the gastrointestinal bleeding was the most problematic part for Jackson, “It could kill him.”

Earlier this year, Jackson was photographed in a wheelchair. Just a few weeks ago, he was seen wearing a mask while receiving walking assistance.

Alpha-1 antitrypsin deficiency is a rare genetic disorder that results in a low level of alpha-1 antitrypsin protein in the blood. The protein acts as a protective shield to block destructive enzymes from essentially chewing up and destroying lung tissue when there is no protective shield. Such destruction is also called emphysema. It is estimated that only 1 in 5,000 to 1 in 10,000 people have this deficiency in the U.S.

The most common symptom of the deficiency is shortness of breath upon exertion. Activities that used to be easy to perform become more difficult, such as walking up a flight of stairs or exercising. This disease can be devastating and is frequently misdiagnosed as Asthma. In severe cases, patients are unable to perform even routine daily activities like getting dressed or taking a shower. Less severe cases involve not being able to run marathons anymore. It all depends on the level of the deficiency and shortness of breath.

In the case of Michael Jackson and other high-level performers, an Alpha-1 antitrypsin deficiency could significantly affect wind power, which is important for sustaining energy while singing and dancing.

For more info go to Fox News.

“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

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 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

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation

Friday, June 26, 2009

Canadian Baby at center of transplant drama receives new heart

CTV News

Baby Lillian O'Connor at the Hospital for Sick Children in Toronto.

A tiny baby at the center of a heart transplant drama in Toronto has been given the gift of life.

On Tuesday night baby, Lillian O'Connor underwent surgery and received an infant heart to replace the damaged one she was born with 15 weeks ago.

Lily's plight was first publicized back in April when she was supposed to get a transplant from another very sick little girl, baby Kaylee, but doctors called it off when Kaylee somehow rallied after she was taken off a breathing machine.

Now, Lily has a new heart from a different donor, and her parents Kevin O'Connor and Melanie Bernard, of Prince Edward Island, are forever indebted to the other infant whose death meant that their child would have a longer life.

"Lily has lost another little one who will forever be near and dear to her heart. R.I.P.," Melanie wrote on her Facebook page.

Baby Kaylee-heart donor

Heart donor two-month-old Kaylee is pictured in this recent family handout photo..

Doctors at the Hospital for Sick Children say Lily's six-hour surgery was a success.

"Lillian is doing very well since receiving a new heart," Dr. Seema Mital, staff transplant cardiologist and associate scientist, said in a news release from the hospital.

"Her successful heart transplant is the result of months of an intensive team effort that involved nurses, intensivists, cardiologists, surgeons, anaesthetists, and many other health-care professionals. The team worked together, first to keep her old heart going for this long, and now, to successfully transplant a new one. While many challenges lie ahead, we are all really pleased at how well she's doing after a long and complex transplant surgery."

It's been a long emotional roller coaster for the Lily's parents, who have been at the hospital almost around the clock since she was born March 9.

Doctors had warned them Lily may be stillborn, as she was suffering from a rare congenital heart defect -- known as truncus arteriosus -- that causes a lack of sufficient oxygen in the blood. But she survived, and held on despite repeated medical emergencies including a staph infection, a collapsed lung and a racing heart.

Lily's mother, a manager with Veterans Affairs, told reporters: "she's got such strength."

At a press conference later Thursday, Lily's parents thanked the people who had supported them over the past few months, including their employers and members of the public.

Hopes were raised, and the story hit the headlines nationwide, when baby Kaylee Vitelli began failing and her parents, hearing about Lily's plight, sought out her family and made the extraordinary offer: Kaylee's heart.

Doctors even prepped for the transplant, but in the end Kaylee's condition improved. So much so she was able to go home.

That meant the agonizing wait continued for Lily and her parents, who knew time was running out.

Doctors told them this week an infant donor heart had become available. Their hopes and prayers had been answered.

As for Baby Kaylee, she was admitted to a hospital in Newmarket, Ont., on Thursday, after running a high fever, a spokesperson for the family said.

With files from The Canadian Press

“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

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 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, June 25, 2009

Head of UK Catholics gives Unqualified Endorsement of Organ Donation

Leaders in the Church of England and of the Jewish, Muslim, Sikh and Hindu communities were also canvassed and endorsed 'The Wall of Life' campaign to support organ donation.

By Hilary White LifeSiteNews.com

LONDON, June 24, 2009 (LifeSiteNews.com) - In the face of reported "uncertainty," British Catholics have been assured by their new Archbishop of Westminster, Vincent Nichols, that donating organs is "a true act of generosity."

"I'm going to join the Register and encourage others to do the same," he said.

Nichols was canvassed by BBC News Religious Affairs Correspondent Robert Pigott, who reported this week that Britons are "unsure" what their various religious communities teach about organ donation.

The archbishop has put his support behind the Wall of Life*, an interactive campaign launched by National Health Services (NHS) Blood and Transplant. The campaign aims to promote awareness of and support for organ donation to boost the number of people joining the NHS Organ Donor Register.

Current organ transplant practices, however, have come under heavy criticism from some Catholic ethicists who say that under the widely employed "brain death" criteria, death is frequently actually brought about by the removal of vital organs from living patients.

Dr. Paul Byrne, a neonatologist and clinical professor of paediatrics who has written extensively on the danger of "brain death" criteria in organ transplantation, expressed his misgivings about Archbishop Nichols' endorsement of the National Health Service program. Dr. Byrne, told LifeSiteNews.com (LSN) that he believes the archbishop has not given "sufficient reflection" to a statement by Pope Benedict in 2008 that "individual vital organs cannot be extracted except ex cadavere."

The pope told a Vatican conference on organ donation in November 2008, "The principal criteria of respect for the life of the donator must always prevail so that the extraction of organs be performed only in the case of his/her true death."

Dr. Byrne said, however, that "after true death, 'ex cadavere' vital organs cannot be transplanted," due to the speed with which they decay. This has led to the rise of "brain death" criteria, which Dr. Byrne says creates a false definition of death, so as to allow for the extraction of vital organs before they are rendered unusable by actual death.

At a conference in Rome in February, Dr. Byrne told LSN that one of the biggest obstacles in fighting for the rights of patients threatened with the untimely removal of their vital organs has been the uncritical endorsement of the practice by certain factions in the Catholic Church.

Leaders in the Church of England and of the Jewish, Muslim, Sikh and Hindu communities were also canvassed and endorsed 'The Wall of Life' campaign.

Despite the unqualified support for the program by the recently appointed archbishop of Westminster, Catholics who were looking for the official teaching of their Church might have been surprised to find a more cautious approach in the Catechism of the Catholic Church (CCC).

The CCC is careful to qualify the Church's endorsement of organ transplants, saying that while organ donation can be "a noble and meritorious act," it cannot even be regarded as "morally acceptable" if the donor does not give proper consent, or if the removal of organs causes his "disabling mutilation or death.

* Read more about the Wall of Life and the religious leaders endorsing organ donation at MedicalNewsToday.

“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

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 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, June 24, 2009

Did Steve Jobs’s Money Buy Him A Faster Liver Transplant?

Health.com has published a comprehensive overview of organ transplantation in the U.S. and notes that wealthy people with access to private jets can be listed at multiple centers to increase their chances of receiving an early transplant. Wealthy people who are, in effect, financially “pre-approved” for a liver transplant, can shop around and identify the transplant centers that will give them the best chance of receiving a new organ. Such patients can readily fly to whatever center calls them with a donor organ. Was this how Steve Job's was able to get such a quick transplant? For the full Health.com story click here

BULLETIN: In response to the huge media coverage of Steve Job's transplant, the Organ Procurement and Transplantation Network (OPTN)) has issued the following statement:

"OPTN Statement Regarding Liver Transplant Waiting Times and Allocation

Recent news regarding liver transplantation has raised public questions regarding how donated livers are allocated and potential variation in transplant waiting times. The national Organ Procurement and Transplantation Network (OPTN), operated by United Network for Organ Sharing (UNOS) under federal contract, cannot discuss details of individual transplant candidates subject to federal laws and regulations regarding patient confidentiality. The OPTN can address general questions about policy and process.

Whenever a person known to the public receives a transplant, it is tempting to compare that person's waiting time to national averages. Any comparison of one person's experience to that of thousands of others can be misleading.

Liver waiting time is greatly influenced by a formula that assigns priority for organ offers based on the candidate's risk of dying within three months without a transplant. For candidates 12 or older, this formula is called a MELD score. (Younger candidates are prioritized by a companion system known as PELD).

MELD uses objective calculations of common laboratory tests of liver and kidney function. MELD scores can range from 6 (least urgent) to 40 (most urgent); candidates with a score of 15 or higher are at considerable risk of dying in the short term without a transplant.

OPTN policy prioritizes liver candidates local to the organ donor with a MELD or PELD score of 15 or higher, then those candidates within the region of the donor who have scores of 15 and higher, before any less urgent candidates may be considered.

Of candidates listed in the United States with an initial MELD or PELD score between 19 and 24, half receive a liver transplant within approximately 15 weeks of being listed. Of those listed with an initial MELD or PELD score of 25 or higher, half receive a transplant within 20 days of listing. Candidates with lower MELD/PELD priority may often wait months to years for a transplant opportunity.

Other factors may further affect waiting time, such as whether the candidate is generally compatible or incompatible with many donor offers based on blood type or body size. Waiting time in a given local area may reflect particular characteristics in that area's recipient population that are not common to other areas. The national allocation system cannot and does not make any distinction of candidate priority based on wealth, celebrity or other purely social characteristics.

In recent years, approximately 6,500 liver transplants have been performed annually in the United States. Today more than 15,000 men, women and children continue to await this lifesaving gift. We hope the current attention generated by news reports will remind the public of the continuing need of all transplant candidates, and of the opportunity to end their wait through making a positive commitment to organ donation."

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

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network

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 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, June 23, 2009

Steve Jobs liver transplant - how did he get it so quickly?

There's been a lot of speculation in the media recently about Apple CEO Steve Jobs secretly receiving a liver transplant in Tennessee. Did he by-pass others on the waiting list? Did he receive special treatment because of his celebrity status? One of the best discussions of this was posted by reporters for the New York Times. To read their story about how patients can get a high position on the transplant waiting list without cheating the system click here.

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

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network

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 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, June 22, 2009

Heart recipient readies for world games in Australia - needs financial help to get there

I recently did another post about Mike Mazzuocco, a double-lung recipient also from St. Catharines who had his bike stolen in the middle of his training for the transplant games in Australia. Like Jacob Kramer, Mike needs to raise almost $10,000 to get to there. Hopefully this post will help both to realize their dreams.

Posted By PETER DOWNS, STANDARD STAFF, St. Catharines, Ontario

The 13-year-old boy watches intently as his dad tells the story of his son's heart transplant when he was a baby.

"Oh, you're going to cry again," Jacob Kingdon Kramer tells his father, sitting right up against him on a couch in the living room of the family's Vineland home.

Boris Kramer smiles at his son and carries on about the heart from someone else's body that beats in his son's chest.

And when he gets to the part about the joy Jacob and his parents get out of attending the World Transplant Games, the tears well in Kramer's eyes.

"It's still emotional," he says. "It's an amazing experience to see people encourage another person. It's about life. It's about people enjoying each other."

The games also allow the family to get together with hundreds of other families who understand exactly what they've gone through.

Jacob, a Grade 7 student at St. Edward School in Jordan, was born with a condition that wouldn't allow his heart to pump properly. A fraternal twin brother died in the uterus of the same condition. His mother, Jennifer, had an emergency caesarean section five weeks before her due date and Jacob was put on a heart transplant list.

At five months old, he received a heart transplant, but the organ had been damaged by ice during transport. Jacob was then put on the top of the list in North America and three days later received a second transplant.

He will need to take anti-rejection medication for the rest of his life and has battled a number of related medical problems.

But those daily medical issues take a backseat at the games, where everyone involved celebrates the life-saving gift of transplants, Kramer says.

Held every other year, the international event draws close to 2,000 organ recipients of all ages who compete in a variety of sports.

The event aims to raise awareness of the continuing need for organ donation.

"It doesn't really matter how people perform," Kramer says. "At the end, everyone is cheering for that one person to finish. It's amazing."

Two years ago, Jacob competed in the world games in Thailand. He's also participated in national versions of the event, which are held in alternating years.

He's slated to compete in three events -- badminton, ping pong and long jump -- in this summer's world games, which run from Aug. 22-30 near Brisbane, Australia.

The majority of families who participate rely on fundraising to cover their travel expenses.

Jacob and his parents are trying to raise the approximately $9,000 it will cost them to attend the event. They're roughly halfway towards their target.

Jacob's school and other groups have organized fundraisers on the family's behalf to help out.

Donations can also be made online by logging on to www.kramersculptures.com and following the link.

To find out more about the Transplant Games in Australia click here.

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

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network

recycleMe.org NEW Ontario donor campaign
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 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, June 20, 2009

Dartmouth man hoping McCartney tickets draw will aid Nova Scotians awaiting lung transplants

Photo by MATT DUNHAM / AP

By Davene Jeffrey The Chronicle Herald Halifax, Nova Scotia

Trevor Umlah is hoping a pair of Paul McCartney tickets will help Nova Scotians awaiting lung transplants breathe a little easier.

The Dartmouth man’s website is raffling off a pair of VIP tickets to the former Beatle’s concert worth more than $600.

At any time there are about 10 to 12 Nova Scotians living in Toronto waiting to receive a lung transplant, Mr. Umlah said.

"And Toronto is not a cheap place to live," he said.

The double lung recipient was lucky; he only had to wait three weeks before he received his transplant. But his wait, coupled with a three-month recovery, cost about $20,000.

He knows of two Nova Scotia women who have been living in Toronto for the past two years waiting for their transplants.

In his case, he and his wife took leaves from their jobs, but many people waiting for transplants are too ill to work and have to be accompanied by a caregiver. In some cases, that means both breadwinners are out of work, Mr. Umlah said.

Last December, the province announced a new program that helps pay the rent of people who must leave the province to get their transplants.

The initiative was sparked by the plight of Marilyn MacKay of Louisdale, Richmond County. She has been living in Toronto for two years waiting her turn on the transplant list and for suitable organs to be found.

Mr. Umlah said his site raised $1,500 by raffling Neil Young tickets last fall. He also organized a golf tournament which brought in $20,000.

His working on another tournament for this fall, but the location has yet to be determined, he said.

To find out more about the raffle or to buy tickets visit Trevor Umlah’s website.

“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

recycleMe.org NEW Ontario donor campaign
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 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, June 19, 2009

Older Kidney Patients May Die on Transplant Waitlist

According to this article, patients over 60 waiting for a kidney transplant have a much higher risk of death while on the wait list than younger patients. The recommendation is to try and find a living donor as an alternative.

By Crystal Phend, Staff Writer, medpageTODAY

SAN FRANCISCO, June 18 -- Nearly half of kidney transplant waitlist patients over age 60 are at risk to die before they receive a deceased-donor organ, researchers found.

Risk of death before acquiring a kidney was even higher for patients age 70 and older, for African Americans, and for diabetics, according to Jesse D. Schold, PhD, of the University of Florida, and colleagues.

These findings provide incentive for older patients to consider living donors as an alternative or to get on the list and navigate the deceased-donor process as quickly as possible, they reported online in the Clinical Journal of the American Society of Nephrology.

Kidney transplant can nearly double the life expectancy of end-stage renal disease patients over age 60. But an increasing gap between supply and demand has produced longer waiting times and increased mortality on the waiting list, the researchers said.

"Expanding waiting times clearly affect all portions of the transplant candidate populations," they said. "However, older and frailer patients may be the most directly affected because of rapid mortality rates before receiving a deceased-donor transplant."

The number of newly listed kidney transplant candidates nearly tripled from 2,367 in 1995 to 6,982 in 2006, the researchers found in an analysis of the Scientific Registry of Transplant Recipients database.

The study included all 54,699 patients age 60 and older when placed on the U.S. waiting list for a single kidney transplant from 1995 to July 2007.

Half of these older candidates were age 60 to 64 at the time of listing, and 79% were on dialysis at the time of listing.

Overall, 61% of the older population received a transplant within five years of going on the list, but the proportion projected to receive a transplant within five years declined during the study period.

For those waitlisted in 2006-2007, Dr. Schold's group projected that 46% would die before receiving a deceased-donor transplant, up from a projected 22% in 1995.

The waiting time for a deceased-donor transplant rose significantly from 1995 to 2007, but the gap between time to transplantation and average survival from waitlisting narrowed during the study period.

However, the projections for the rate of death before receipt of a deceased-donor kidney varied widely within the older population:

  • 61% for those with diabetes

  • 52% for those older than 70

  • 62% for black patients

  • 71% for blood type B

  • 68% for highly sensitized patients

  • 53% for those on dialysis at listing
Where patients lived also made a big difference in projected rate of death before kidney transplantation. The mortality rate ranged from 81% for those in United Network for Organ Sharing region five (Arizona, California, Nevada, New Mexico, and Utah) to just 6% for those in region six (Alaska, Hawaii, Idaho, Montana, Oregon, and Washington).

These factors may help clinicians and patients in decision-making, the researchers said.

"As these results demonstrate, a white candidate with type AB blood in region one [Connecticut, Maine, Massachusetts, New Hampshire, and Rhode Island] is in a very different circumstance than a black candidate listed with type B blood in region five," they noted.

They cautioned, though, that the study was limited by its retrospective, population-based design: its database did not include many factors that ultimately influence patients' prognoses and likelihood of receiving a transplant.

"In this sense, these results provide a general framework that can be used to guide patients and illustrate the importance of various factors, but should not be used exclusively ignoring individual circumstances," they concluded.

The practice of transplantation is rapidly changing, but not in favor of older patients, they noted. In particular, they cited a proposed policy for organ allocation that would give younger patients more rapid access to deceased-donor transplants than older candidates.

Source

The data and analyses reported in this article were supplied by the United Network for Organ Sharing and Arbor Research under contract with the Department of Health and Human Services.

The researchers reported no conflicts of interest.


Primary source: Clinical Journal of the American Society of Nephrology
Source reference:
Schold J, et al "Half of kidney transplant candidates who are older than 60 years now placed on the waiting list will die before receiving a deceased-donor transplant" Clin J Am Soc Nephrol 2009.

“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, June 18, 2009

Bake sale to help lung transplant patient with expenses

I'm always ready to help promote fundraisers for organ transplant patients who are faced with huge expenses in order to get a life-saving transplant. This article puts the financial burden in perspective.

Lancaster Eagle Gazette

Lancaster, Ohio– Terrie Dean, 56, was diagnosed with severe chronic obstructive pulmonary disease (COPD) in 2005. Her condition has since worsened, and she now constantly depends on an oxygen tank, which limits her mobility. Doctors say her only hope for a second chance at life is a double-lung transplant.

A double-lung transplant costs approximately $650,000, and that is only the beginning. Even with health insurance, Dean faces significant expenses related to her transplant. For the rest of her life, she will require costly follow-up care and anti-rejection medications. Dean’s illness forced her to leave her job as a customer service manager, adding to her financial strain.

It is estimated that in the short term, Dean needs at least $100,000 to cover her medical expenses. Because the transplant will take place 200 miles from her home, she will incur substantial travel and temporary housing expenses as she goes through treatment and recovery.

To help alleviate some of these financial burdens, Dean turned to the National Foundation for Transplants (NFT) for assistance. NFT is a nonprofit organization that helps patients raise funds to pay for transplant-related expenses.

Volunteers are planning a bake sale Saturday, June 20 from 10 a.m. to 4 p.m. to assist Dean with her medical expenses. The bake sale will take place at the Walmart on Memorial Drive in Lancaster. Baked goods available for purchase will range in price from 50 cents to $5. All proceeds will benefit the National Foundation for Transplants (NFT) in honor of Dean.

For more information about the upcoming bake sale, contact Kimberly Persons at kimberly.persons@yahoo.com or 740-652-9107.

To make a tax-deductible donation in honor of Dean, please send a contribution to the NFT Ohio Lung Fund, 5350 Poplar Ave., Suite 430, Memphis, TN 38119. Please be sure to write “in honor of Terrie Dean” on the memo line. Secure donations also can be made online at National Foundation for Transplants. Donors should click on “Patients We Help” to locate Dean.

“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, June 17, 2009

Giving the Gift of Life

By Dan O'Donnell 620WTMJ NewsRadio

MILWAUKEE - Mary Nachreiner thought her world had ended a decade ago when her daughter Kelly died in a car crash just a month after her 16th birthday.

"Four weeks before that at the DMV she told me that she wanted to be an organ donor," Mary recalled.

"Why wouldn't I?" she remembered Kelly telling her.

It was a snap decision, one made with little forethought or contemplation. Kelly simply wanted to give the gift of life in the event that hers was taken away and, as fate would have it, she did.

On December 29, 1999, Kelly was riding in a friend's pickup truck when it crashed into a tree in Honey Creek. She suffered severe head injuries and died five days later.

With her death, though, one of her last wishes was fulfilled and her kidneys, pancreas, and liver were all successfully transplanted. She had given three different people the gift of life.

"I see the full circle of life in organ donation and transplantation," Mary said, a tear forming in her eye as she beamed with pride in her beloved daughter. "The positive impact that had on our family at the darkest time of our lives has just led me and my family on this mission."

That mission has led them to continually grow the circle of organ donation and helped to pass the "Kelly Nachreiner Bill," the country's first law mandating a half-hour organ donation awareness class in ever driver's education program.

"I'm the vehicle to just carry on Kelly's wish," Mary stressed. "Although I'm being recognized, I'm doing this on behalf of Kelly."

Her wish, her legacy, her gift of life has inspired so many that Wisconsin is now one of the nation's leaders in organ donation.

"I am so proud when people from other states say, 'What is it you do in Wisconsin to have such awesome donation rates as well as transplant outcomes?"

In spite of that, Mary insisted that there is still plenty of work left to do.

"We have 102,000 people on the transplantation waiting list in this country and 1,400 here in Wisconsin," she noted. "Unfortunately, the need far, far, far exceeds the number of organs that are available."

So Mary's world will continue to revolve around honoring Kelly's last wish, expanding the circle of organ donation, and challenging people across the country to to accept the challenge of giving life, even in death.

"I think it really comes down to if you or a loved one needed an organ to survive, would you accept it?"

Mary is a finalist in the Major League Baseball-People Magzine "All-Stars Among Us" Campgain. Click Here to vote for her to represent the Milwaukee community at the All-Star Game in St. Louis next month.

“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, June 16, 2009

Utah transplant doctor, thriving with a new liver, races to help others

It always amazes me when I read about extraordinary goals organ transplant recipients set out to achieve, but this story of a liver recipient planning to take part in the Race Across America is the most ambitious I've heard about. The bicycle race starts in Oceanside, CA at The Oceanside Pier. Women June 16th, Men June 17th, Teams June 20th. It finishes 3,000 miles later in Annapolis, MD at The City Dock. June 26th - June 29th. Read all about it here.

Race Across America is an annual effort to raise awareness and funds for liver transplants, organized by Team Donate Life. Cyclists have raised more than $1 million each year for the past three years.
Team members ride for 30 minutes at a time during 12-hour shifts, and expect to spend a week traveling 3,000 miles across the country, nonstop.
The race begins Saturday in Oceanside, Calif., and it will end in Annapolis, Maryland.
To donate, visit
http://www.teamdonatelife.com.

By Andrew Maddocks The Salt Lake Tribune

Going into his first routine physical in 20 years, physician Terry Box thought little of the occasional odd feeling in his left side.

Then the internist asked, "Did you know your liver's huge?"

In an instant, the veteran Utah liver transplant physician became the patient. A malignant tumor was growing in his liver.

After 13 years of caring for LDS Hospital patients before and after liver transplants, he knew the risks -- many died waiting for an organ. Even after surgery, rejection and relapse loomed.

"I was scared to death," the 57-year-old Box said. "Having seen what I had seen in medicine, obviously you think about all the terrible situations."

But seven years after his successful transplant and surgery, Box is putting his body to a new test -- he leaves Saturday for Race Across America, a 3,000-mile, cross country bicycle race to raise money and awareness about organ transplantation.

He's grateful for his own donated liver -- and the 23 years he has guided Utah patients through the same process at Intermountain Healthcare and now at University of Utah Health Care.

A new liver can literally save a patient's life, he says. "It's giving birth; it's giving renewal of life."

Fellow transplant physician Ray Thomason, Box's best friend and partner for 22 years, is joining him on the eight-man cycling team, the Liverators.

During the two-year window for transplants, Thomason said, more people die waiting than actually receive organs.

"It's absolutely tragic that people die waiting for a liver transplant," Thomason said.

When doctors found his tumor in 1999, Box says, he was not very sick, and he didn't join the liver transplant waiting list. Other patients were in worse condition, he felt. "I didn't need to be competing with them for an organ," he said.

But by 2002, his health had rapidly deteriorated and his name moved up the list quickly. As Box rolled into an LDS Hospital operating room in October, Thomason said goodbye.

Box's normally three-pound liver had become a 28-pound malignant mass. "He shouldn't have lived," Thomason said.

But he did -- and Thomason believes Box is the only transplant physician in the U.S. to receive a successful transplant.

"I really never doubted I would make it," Box said, also an associate professor at the U.

Having a doctor who was facing the same challenges was deeply comforting for Salt Lake City patient Stephen Wadsworth, now 65. The men were on the waiting list at the same time, and had their surgeries in the same month.

"He gave me a lot of hope, and encouraged me about the future," Wadsworth said.

Box, Thomason and other team members have trained for thousands of hours for the upcoming ride. Later this week, they will say a happier goodbye -- as they leave families and colleagues to fly to California and start the race Saturday.

“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

Sunday, June 14, 2009

Mother saves daughter with liver transplant


By ThinkSPAIN

An eight-month-old baby with liver cancer, whose only chance of survival was a transplant, has been saved by her own mother who donated a quarter of her kidney in the first ever liver transplant from a live donor to be performed in the Comunidad Valenciana.

Details of the operation that was performed at the Hospital La Fé in Valencia on June 3rd were released today by José Mir, head of the Liver Transplant and Surgery Unit and Juan Galán, transplant coordinator for the hospital.

The baby's mother, María José Jordá, herself a doctor, has already been released from hospital and is doing well, as is baby Eva, who will need only minmal immunosuppression treatment since her liver comes from a close blood relative.

Both parents were tested for compatibility with their daughter and the child's mother said she had 'no doubt' about going ahead with the operation, despite being told that there was 'small risk' (the operation is fatal in 0.2% of cases). There was a real risk of the baby developing metastases at which point a transplant would have been impossible.

The operation took ten hours and involved 18 members of La Fé's medical team, with the baby's operation being especially complicated because of her small size.

According to Mir, the donor will be able to regenerate her liver and the addition of healthy liver tissue will enable the baby's liver to recover, giving her a much better quality of life than she has enjoyed so far.

“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, June 12, 2009

Organ Transplants And Oral Health

NAPSI (National Institutes of Health)

If you are an organ transplant patient, you are at risk for mouth problems and organ transplant patients are urged to pay special attention to their oral health.

Your medical condition and side effects from your transplant medications can affect your oral health and complicate dental care. The National Institutes of Health offers these tips to help people stay well:

Before Transplant

Have a dental checkup to make sure your mouth is as healthy as possible before your transplant procedure. Taking care of cavities, gum disease and any other mouth problems ahead of time can help prevent or reduce the side effects of transplant medicines.

After Transplant

Anti-rejection medications suppress your immune system and make it easier for you to develop mouth infections like gum disease or thrush, and other problems such as gum overgrowth, dry mouth, mouth ulcers or tumors. Your dentist can help you manage any side effects of transplant medicines that may occur.

Working With Doctors

It's important for your dentist and transplant doctor to speak with each other before dental treatment.

  • Make sure your dentist knows that you are a transplant patient. Give your dentist the contact information for your transplant doctor.


  • Bring a list of all your medications, including over-the-counter drugs, to every dental appointment. Tell your dentist if your medications have changed.


  • Talk to your dentist about your general health. If you have diabetes or other health conditions, make sure your dentist knows. In the same way, talk to your transplant doctor about your oral health. Tell your doctor if you have mouth problems.

Staying Healthy

Take an active role in keeping your mouth healthy after your transplant procedure--check your mouth every day for any changes and brush and floss daily. If you have any questions about brushing and flossing, particularly if your mouth is sore, ask your dentist or dental hygienist.

To view or order a free fact sheet about organ transplantation and your mouth, visit https://www.nidcr.nih.gov/OrderPublications.

“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, June 11, 2009

Ohio State University Hospitals Closes Lung Transplant Program

This post suggests that patients seeking a lung or other organ transplant should verify the number of transplants a center performs each year and how many are on the waiting list. As far as lung transplants go, Toronto General Hospital, where I had my lung transplant, is one of the world's leading transplant centers with 50 lung transplants already performed this year and 54 patients are on the waiting list at present.

From the Surgery Blog by Jennifer Heisler, RN
Surgery and Transplant News: The Ohio State University Hospitals Closes Lung Transplant Program and What Transplant Patients Need To Know About Transplant Centers

The Ohio State University lung transplant program made an important announcement this month. The program will be closing its doors on July 1st. While the decision was made voluntarily, the low number of lung transplants being performed might have eventually caused regulators to close the program had it not been done by the hospital.

So, what does this mean for you? If you are a patient waiting for an organ transplant, there are important questions you need to ask the transplant center. Otherwise, you may find yourself waiting for a transplant that performs very few surgeries. For example, the Ohio State program did one lung transplant last year and two this year. At that rate, the 15 people waiting at Ohio State could have waited 8 years or longer for a transplant. Contrast that with the Cleveland Clinic which, on average, performs a lung transplant every three days. Certainly, there are more people on the waiting list at the Cleveland Clinic, but the odds of getting a transplant more quickly are much higher.

So, back to those question you should be asking, regardless of what organ you are waiting for.

1) How many people are on your waiting list?

2) How many transplants do you perform a year? What is your average for the last 5 years?

What is your one year survival rate? (It doesn't matter how many they perform if people aren't surviving the surgery!) and finally

Should I consider being listed at multiple centers? That last question may be one you have to answer for yourself, after weighing the costs and benefits, but your transplant center should be able to help provide you with essential information you need to make your decision.

***

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“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, June 10, 2009

55-year-old woman 500th lung transplant at University of Washington Medical Center

Tri-Citan gets lung transplant

by Michelle Dupler, Herald Staff Writer thenewstribune.com

Dave Cox said he had just gotten home from work on a Friday evening in April when a Benton County sheriff's deputy pulled up to the home he shares with his wife, Karla.

The deputy had a message for the couple who live between West Richland and Benton City -- someone in Seattle was trying to reach them.

Karla Cox took the number and dialed. A moment later, her husband heard her say, "You've got lungs for me?"

Within minutes, the two were packing their Chevy Tahoe to leave for Seattle, where Karla would become the 500th patient to receive a lung transplant at the University of Washington Medical Center.

Karla Cox, 55, spent six years being sick and three years on a waiting list before getting the pair of lungs that will allow her to once again do simple things like walk around the block, go to the grocery store or play with her seven grandchildren.

The Richland native was living in California with her husband when diagnosed with primary pulmonary hypertension but returned to the Tri-Cities to be closer to family when she fell ill. Doctors aren't sure how she developed the disease.

Her parents and the couple's children and grandchildren all live in the Tri-Cities, she said.

Dr. Michael Mulligan, the surgeon who performed Cox's double-lung transplant in April, said pulmonary hypertension is a form of high blood pressure that attacks the lungs. Mulligan and the Coxes attended a news conference Tuesday at the medical center to discuss the operation.

Blood flows from the heart to the lungs to receive oxygen and then back to the heart to be pumped throughout the body. But the pressure in Cox's lungs was so intense it wasn't allowing enough blood through, Mulligan said.

Doctors tried drugs and even boring a hole between the two upper chambers of her heart to allow more blood to flow through. That kept her alive, but she became so weakened she could only rarely get out of bed, he said.

Her husband said an entire wall of kitchen cabinets was filled with medicine and equipment for Karla.

"That's the way we lived for six years," he said.

Replacing her lungs would be her best chance for survival.

"At one point, she became so sick we didn't know if she would tolerate the operation," Mulligan said. "When you're doing something of that magnitude to someone who is bed-bound, you can have a bad outcome."

With the help of her husband and what Mulligan described as "sheer will," Cox put enough weight back on so that she'd be able to undergo surgery.

But she had another hurdle to face. Her body was producing so many antibodies -- the proteins the immune system uses to neutralize foreign objects -- that it was difficult to find a transplant that would be a match.

And Mulligan said lungs are more vulnerable to rejection than other transplanted organs -- heart, liver or kidney.

"People do badly when their lungs reject," he said. "It's the only organ that's in constant contact with the environment, breathing in the exhaust from a bus. They're far more vulnerable to infection."

Because of the increased risk of infection, survival rates for lung transplant patients are lower than other kinds of transplants, but Mulligan has aggressively worked to give patients better odds of surviving and thriving.

In 1998, about 48 percent of people survived five years after a lung transplant, both at UW and nationally, he said.

By 2009, those rates have climbed to 65 percent at the UW, while remaining about 48 percent nationally.

The one-year survival rate for UW lung transplant patients has risen from 60 percent in 1998 to more than 90 percent now, Mulligan said. Nationally those rates went from 75 percent to about 80 percent.

The program performs about 60 transplants for year, most of them replacing both lungs, he said.

"It makes us one of the top three or four programs in North America," Mulligan said. "We have really been able to pull away from the pack."

One way the program has done that is by taking patients other transplant programs have deemed too sick -- like Cox, whom Mulligan said had been on the transplant list at UCLA before surgeons there decided there was no effective strategy to treat her.

"We really felt like maybe it wasn't going to happen," Dave Cox said.

But the call came and Karla Cox was given a new lease on life.

Her transplant means she'll no longer will experience pulmonary hypertension and should be able to return to a normal life.

"She should have an excellent recovery and excellent longevity," Mulligan said. "I saw her today and she looks well. She went from being able to walk maybe 40 feet to walking four city blocks."

Cox was discharged from the hospital about a week ago, but will have to remain near Seattle for about two months while she continues rehabilitation.

"Right now it's a little tiring, but I'm getting stronger," she said. "It feels good to get out. I will be able to cook now and play with my grandkids."

The Coxes and Mulligan all emphasized the importance of organ donation in helping people like Karla.

"Really, you touch a myriad lives when you're able to do this, and the only way we can do this is when you donate organs," Mulligan said. "This needs to be a grass-roots community effort to try to take care of one another. Your neighbor could be the one who donates to save your spouse or your child someday."

For more information organ and tissue donation, visit http://www.organdonor.gov/

“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

“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, June 09, 2009

Donated Lungs Breathing Outside the Body (Video)

Dr. Shaf Keshavjee told me that as of June 4th they have now performed eleven very successful lung transplants using this new Toronto Exvivo technique which means that eleven more patients are alive because they could use this novel strategy to assess and treat donor lungs. All patients are doing very well and this bodes well for the future by increasing the number of donor lungs available for transplant and getting patients off waiting lists. Dr. Keshavjee also said that they have already taught this EXVIVO technique to fifteen lung transplant surgical teams worldwide and surgeons at the Harefield-Brompton Hospital in the UK have recently performed their first successful exvivo lung transplant using the Toronto technique.

By Drew Halley Singularity Hub Blog

Pop quiz! What’s weirder than dead organs sitting around in glass jars? Live organs moving around in glass domes.

For patients with late-stage respiratory diseases, finding a new pair of lungs can be… well, about as hard as it sounds. Currently, about four out of five lung donations are rejected for use, as they don’t fit the criteria required for a safe transplant. Keeping an organ alive outside the body is tricky stuff, especially long enough to patch it up. But what if doctors had enough time to repair donated organs that were initially unfit for transplant?

For the first time, doctors at Toronto General Hospital have used what is called the XVIVO Lung Perfusion System to repair donated lungs. Using a ventilator, pump and filter, the new technique can keep lungs breathing in a glass dome for up to 12 hours following donation. This time window allows doctors to better assess the potential of the organs for transplant, or to repair damaged lungs. Today, only 25% of patients can find a lung donation match. Keeping the lungs alive for a longer period of time improves those odds, increasing lungs’ chances of being used by as much as 5 to 10 times.

In case you didn’t catch that, lungs are breathing in a glass dome. Creepy? You bet. Check it out yourself:


The lungs are kept alive at 37°C, the same temperature as your body. Vitrolife, an international biotech group, worked with Swedish doctor Stig Steen to develop a bloodless solution that allows the functionality of lungs to be tested prior to transplant. Called Steen Solution, the fluid is rich in nutrients, oxygen, proteins, and all that good stuff that keeps your lungs happy and healthy. By running the solution through the lungs, doctors can assess how well they exchange gasses, their ability to maintain normal body temperature, and a whole host of diagnostic criteria that take valuable time to assess.

Four* patients have received transplants using the technique to date, and all have been successful. Andy Dykstra was is the only successful recipient whose new lungs were unfit for transplant until the XVIVO system was used to repair them (the other three donations met criteria, but were further repaired prior to surgery). Andy could breathe without artificial help just four days following the transplant, and was discharged from the hospital after only twelve days. Not too shabby for a complete lung switch-out.

Dr. Shaf Keshavjee, Director of the Lung Transplant Program in Toronto, put the technique in context: “Many more donor lungs which we could not have used before can now potentially be used safely, and it sets the stage for more sophisticated molecular and cellular repair techniques to be applied in the Toronto XVIVO Perfusion System so that transplant outcomes can be further improved. The potential exists to immunologically pre-prepare the organ before it even sees the recipient’s immune system.”

Individuals with cystic fibrosis and emphysema are often at risk of lung failure during the later stages of their disease. But finding a new pair of lungs is no easy feat. Normally, lungs are cooled after donation to preserve the organs prior to transplant. But the cooling process slows cellular metabolism, which inhibits active repair strategies before transplantation. Keeping them at body temperature allows more repair work to be done, improving the chances of a successful transplant.

With an active imagination, you can pretty much run wild with this one. Maybe someday, these technologies will find a use without the need for organ donation. Imagine receiving artificial respiration while your lungs were removed, repaired, and inserted back into your body. Think of it like a tune-up for your body. I, for one, would love to see a big room full of lung donations pumping away in little domes. Patients could pick their favorite transplant organ, sort of like choosing your lobster at a seafood restaurant. Well, okay… maybe not.

Regardless, this technique creates new options for lung repair and will drastically increase the success rate of donated lungs. All told, that’s pretty cool.

*As of June 4th eleven patients have received lungs that were repaired and reconditioned by the EXVIVO process.


You can find the press release about the XVIVO system here.

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

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

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

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, June 08, 2009

Live-Donor Kidneys Withstand Long-Distance Travel

By Jody A. Charnow Renal & Urology News

Allografts flown coast-to-coast were transplanted successfully despite prolonged cold ischemia

Shipping live-donor kidneys to transplant centers over long distances—even transcontinentally—does not adversely affect recipient outcomes, a recent experience involving four transplant centers suggests.

Investigators presented details of a chain of eight donor- exchange transplants facilitated by three transcontinental shipments and one intrastate shipment of live-donor kidneys. The four shipped kidneys were all packed in ice and then transported, unaccompanied, by commercial airlines to the recipients' hospitals with local Organ Procurement Organization involvement. These kidneys were transported and transplanted without incident, said Fauzia K. Butt, MD, a transplant surgery fellow and clinical instructor at the University of California in Los Angeles (UCLA). At three to six months post-transplant, all allografts were functioning well, said Dr. Butt, who was involved in the first transplant.

The chain was initiated by an altruistic donor in New York, who underwent a laparoscopic donor nephrectomy at the New York Presbyterian-Weill Cornell Medical Center. That kidney was then packed on ice, taken by courier to the airport, and flown by commercial jet to Los Angeles for transplantation at UCLA. The kidney had 14 hours of cold ischemia prior to transplantation. “However, it produced urine immediately in the OR upon reperfusion,” Dr. Butt stated. She added: “The kidney showed absolutely no signs of jet lag. It acted as if it had taken a journey from the OR next door, not a trip across the country.” At six months post-transplantation, the recipient's serum creatinine level was 1.2 mg/dL and she was doing well.

Additional kidneys were transported from Los Angeles to Palo Alto, Calif., for transplantation at Stanford University, from Palo Alto to New York for transplantation at New York Presbyterian-Weill Cornell Medical Center, and from New York to San Francisco for transplantation at California Pacific Medical Center. The cold ischemia times for these kidneys were 8, 12, and 11 hours, respectively. The recipients serum creatinine levels at three months were 1.5, 1.3, and 1.7 mg/dL, respectively.

“This experience demonstrates that it is not necessary to transport the donor, as is customary, but that transportation of living donor kidneys is a viable option, similar to what is routinely done for deceased donor kidneys on a daily basis,” Dr. Butt told Renal & Urology News. “If individuals can be spared traveling long distances to the recipients' transplant centers in unfamiliar surroundings, they could recover from their surgery amongst friends and family and additional people might be inspired to become live donors. The results would be an expansion of the donor pool with quality living donor kidneys.”

“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