Wednesday, June 30, 2010

Chain of transplants gives 14 kidney patients new life

Living Donor Paired Exchange Registries are becoming very popular as a vehicle to get patients off waiting lists to receive their life-saving transplant. This article is a wonderful example of how the paired exchanges work. In North America you can register for paired exchange programs in Canada or the U.S. at Matching Donors.com

By Leslie Tamura
Washington Post Staff Writer

It started with a tragedy and ended with a priceless gift to 14 people.

Jennifer Whitford, a 24-year-old mother of two from Sebring, Fla., died accidentally on May 24. Her mother decided to donate her organs, and a national kidney registry found a perfectly matched recipient: Brenda Wolfe, 44, of Mount Airy, Md. Two days after Whitford's death, one of her kidneys was transplanted into Wolfe at Georgetown University Hospital.

And that might have been the end of it: an everyday medical miracle.

But Wolfe's husband decided the miracle did not have to stop there. Earlier, he had offered to give his wife a kidney, but his tissue and blood type were incompatible with hers. So Ralph Wolfe had joined a paired-kidney exchange pool organized by Georgetown, Washington Hospital Center, Children's National Medical Center and Inova Fairfax Hospital; in doing so, he agreed to donate one of his kidneys to a stranger so some other stranger would give one to his wife.

Because Brenda had received her kidney from a deceased person, Ralph could have left the pool with a clear conscience. He stayed.

"A precious daughter, a precious daughter died and gave my wife life," said Ralph, 48, "and I'm going to be so selfish to say, 'I'm going to hold on to this kidney, just in case'?"

So, 13 days later, he donated a kidney to Gary Johnson, 63, a taxi driver from Hyattsville. Then Johnson's 61-year-old wife, Jeannette, donated one of her kidneys to a man in Arlington. That man's sister donated a kidney to a woman in Temple Hills, and so on.

In all, between May 26 and June 12, 28 people were involved in a remarkable chain of 14 kidney transplants. Many of the donors and recipients met for the first time June 15 at a hospital gathering.

"I'm fairly certain this is the largest [exchange] within a single city," said Jimmy Light, director of transplantation services at Washington Hospital Center.

Besides donors who joined on behalf of spouses, relatives or friends, two "non-directed" donors contributed to the exchange with no trade implied.

"There was a desperate need in the community to address those suffering from kidney disease," said one of the non-directed donors, Barbara Norton, 57, who recently moved to Rockville. "It was going to take . . . families coming together, communities coming together, caring for loved ones and even those you don't know." Norton's kidney went to Tracye Johnson of Waldorf; Johnson's cousin, David Young, gave a kidney to Vonda Brown of District Heights; Brown's daughter, Andrea, gave a kidney to Jason Crockett of Fort Washington. And so on.

"This is the start," said Rosalyn Carter, a transplant coordinator. "If we can do this here, we can constantly make it bigger and bigger and bigger."

Kidney transplants are major operations with the usual risks of bleeding and infection. Surgeons remove donors' kidneys laparoscopically, using a camera and a few small cuts into the belly. Most donors recover in two days and go on to lead normal, active lives.

There are more than 85,000 people waiting for kidneys on the national registry, and about 61 percent of them are African Americans, Hispanic Americans and Asian Americans, according to the Department of Health and Human Services. These minorities have the highest need and the most trouble finding a compatible donor, said Keith Melancon, director of Georgetown's kidney/pancreas transplant program. More than half of the 14 recipients in the Washington exchange were minorities.

"There are patients out there that we cannot get transplanted by traditional means," Melancon said. "Through these exchanges we have consistently been able to get these minority patients transplanted."

With the paired-exchange system, "there's no such thing as an incompatible donor," said Light.

Regional paired-kidney exchanges have had enough success to inspire the creation of a national pool, said John Friedewald, chair of the United Network for Organ Sharing's committee for kidney paired donation. In February, UNOS sponsored a pilot project to develop a national computer database for paired exchanges. The group hopes to begin matching donors to recipients this fall.

For Cardinal Crusoe of Landover, his days on dialysis are over, thanks to the local kidney pool, which included his daughter, Denise Blackwell of Hyattsville.

Though her father calls her "Super D," Blackwell, 34, says she's no hero. Still, when the opportunity came for her to give, she knew "hands down" that she wanted to donate.

"You can't imagine just seeing a parent helpless after working as much as he do," she said. "Even when he was sick, he kept the household together."

Less than two weeks after his operation, Crusoe, 55, is making plans to return part time to his job as a counselor for the developmentally disabled.

"I have eight grandchildren that I love," Crusoe added, "and I want to be around for them."

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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

Tuesday, June 29, 2010

Scientists grow new lungs using ‘skeletons’ of old ones

R&D Magazine

For someone with a severe, incurable lung disorder such as cystic fibrosis or chronic obstructive pulmonary disease, a lung transplant may be the only chance for survival. Unfortunately, it’s often not a very good chance. Matching donor lungs are rare, and many would-be recipients die waiting for the transplants that could save their lives.

Such deaths could be prevented if it were possible to use stem cells to grow new lungs or lung tissue. Specialists in the emerging field of tissue engineering have been hard at work on this for years. But they’ve been frustrated by the problem of coaxing undifferentiated stem cells to develop into the specific cell types that populate different locations in the lung.

Now, researchers from the Univ. of Texas Medical Branch at Galveston have demonstrated a potentially revolutionary solution to this problem. As they describe in an article published electronically ahead of print by the journal Tissue Engineering Part A, they seeded mouse embryonic stem cells into “acellular” rat lungs—organs whose original cells had been destroyed by repeated cycles of freezing and thawing and exposure to detergent.

The result: empty lung-shaped scaffolds of structural proteins on which the mouse stem cells thrived and differentiated into new cells appropriate to their specific locations.

“In terms of different cell types, the lung is probably the most complex of all organs—the cells near the entrance are very different from those deep in the lung,” said Dr. Joaquin Cortiella, one of the article’s lead authors. “Our natural matrix generated the same pattern, with tracheal cells only in the trachea, alveoli-like cells in the alveoli, pneumocytes only in the distal lung, and definite transition zones between the bronchi and the alveoli.”

Such “site-specific” cell development has never been seen before in a natural matrix, said professor Joan Nichols, another of the paper’s lead authors. The complexity gives the researchers hope that the concept could be scaled up to produce replacement tissues for humans—or used to create models to test therapies and diagnostic techniques for a variety of lung diseases.

“If we can make a good lung for people, we can also make a good model for injury,” Nichols said. “We can create a fibrotic lung, or an emphysematous lung, and evaluate what’s happening with those, what the cells are doing, how well stem cell or other therapy works. We can see what happens in pneumonia, or what happens when you’ve got a hemorrhagic fever, or tuberculosis, or hantavirus—all the agents that target the lung and cause damage in the lung.”

The researchers have already begun work on large-scale experiments, “decellularizing” pig lungs with an eye toward using them to produce larger samples of lung tissue that could lead to applications in humans. They’re also taking on the challenge of vascularization—stimulating the growth of blood vessels that will enable the engineered tissues to survive outside the special bioreactors that the researchers now use to keep them alive by bathing them in a life-sustaining cocktail of nutrients and oxygen.

“People ask us why we’re doing the lung, because it’s so hard,” Cortiella said. “But the potential is so great, and the technology is here. It’s going to take time, but I think we’re going to create a system that works.”

Other authors of the Tissue Engineering Part A paper (“Influence of Acellular Natural Lung Matrix on Murine Embryonic Stem Cell Differentiation and Tissue Formation”) are UTMB research associate Jean Niles, associate professor Gracie Vargas, medical student Sean Winston, graduate student Shannon Walls, summer research fellows Andrea Brettler and Jennifer Wang, Andrea Cantu of Stanford University and Dr. Anthony Pham of Brown Medical School.


“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 28, 2010

Fresh Air Fund Trips Start June 30th

Click image for larger view

A favorite charity that I promote is the Fresh Air Fund that helps boys and girls, six to 12 years old, who reside in low-income communities in New York City, to enjoy the experience of spending two weeks of life outside the city each summer.

Sara Wilson of the Fresh Air Fund says they have been thrilled with all of the interest generated within the blogosphere for Fresh Air children. Next week on June 30th they will have their first departure of Friendly Town trips. They have trips going to Southern & Central VT, New London area CT, Great Barrington, MA, Latham/Albany area, Ontario, Rochester area. Everyone is so excited that the children are coming into these homes and towns and that it's the first day visiting for summer 2010. Host families are still needed. For more info on becoming a host go to Host Family Program.

The Fresh Air Fund relies on donations to provide memorable summers for NYC children and a generous donor has offered to double all donations received by June 30th, 2010. For example, your gift of $24 becomes $48, good for TWO round trip tickets from NYC to camp. To make a donation go to Donate Now.

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 25, 2010

Opera Soprano Sings Again After Double Lung Transplant and Open Heart Surgery

Submitted by Denise Reynolds RD EmaxHealth

Charity Tillemann-Dick, a world renowned opera soprano, was diagnosed in 2002 at age 20 with idiopathic pulmonary arterial hypertension, a serious condition characterized by abnormally high blood pressure in the arteries of the lungs that often leads to both heart and lung failure. Last month, after receiving a double lung transplant and having open heart surgery that saved her life, the young woman sang “Someone to Watch Over Me” and “O Mio Babbino Caro” to her doctors and nurses at the Cleveland Clinic.

Ms. Tillemann-Dick, whose full name is Charity Sunshine, kept positive about her disease and the difficult treatment that followed. She even continued to sing on international stages with heavy makeup to disguise her sallow skin. “When you’re facing a challenge like this, it’s important to plow through and do the best that you can and do what you want to do that’s good.”

Idiopathic Pulmonary Arterial Hypertension (IPAH) is thought to only affect about 5-10% of the population. It affects women more often than men. In many cases, the cause is unknown, but it is thought to have a genetic component.

Pulmonary hypertension is caused by a narrowing of the small arteries of the lung which makes it harder for the right side of the heart to circulate the blood to the lungs. Overtime, the right side of the heart may become enlarged and fail, called cor pulmonale. Symptoms include chest pain, dizziness, fatigue, and shortness of breath.

There is no known cure for IPAH, but several forms of treatment are available to control symptoms, such as calcium channel blockers and diuretics. Some patients are put on blood thinners to reduce the risk of blood clots.

Overall prognosis for the condition is poor; morbidity and mortality rates vary based on degree of the condition, the age of the patient, and the ability to respond to therapy. When treatment with medication fails, suitable candidates may be helped by a lung or heart/lung transplant.

After her own surgery, Charity began retraining her voice by humming and progressed to show tunes as her body strengthened. She has performed already this summer at the Swiss and Hungarian embassies. Dr. Ken McCurry, who led her nine-hour operation, said "It's always gratifying when you see a patient recover, but to have a patient recover this quickly and to this extent -- it is stunning.

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 23, 2010

British Columbia dad gets new heart as Father's Day gift

Port Moody dad gets new heart as Father's Day gift
Family thankful for new lease on life

BY LAURA BAZIUK, The Province

Chris Kirby received his most-hoped-for Father's Day present — the gift of life.

The 34-year-old Port Moody father woke up with a new heart Sunday after receiving word that a donor had been found 19 months to the day after he signed up for the procedure.

Kirby was just settling in to do some gardening with his three-year-old daughter, Morgan, when his cellphone rang.

His wife, Tanya Fawkes-Kirby, passed him the phone.

"They called and said, 'Your heart's here,'" she told The Province Monday. "We just looked at each other, and then I ran around trying to call his mom and his dad and get organized.

"It was a mad blur."

The two arranged a babysitter for Morgan, packed a bag and rushed off to Vancouver.

It wasn't until they arrived at St. Paul's Hospital that they realized the timeliness of the call.

"We were like, 'Wow, what a Father's Day gift,"' Fawkes-Kirby said. "This is a good one."

Kirby was diagnosed with heart disease when he was 15 years old, and had to have surgery at 18 when he went into cardiac arrest.

"He did pretty well until 2007 or so, and then 2008 was when everything started to really go downhill for him," Fawkes-Kirby said. "His activity dropped and dropped."

She and her husband used to go running together, and he would take Morgan to the park.

His heart was only working at about 20 per cent, and he wasn't able to walk more than a block before feeling light-headed.

"I mean, in 2006, we ran a marathon together," his wife said. "By 2008, he wasn't able to do a flight of stairs.

"We've been waiting for so long. To have it done is a nice, huge relief."

It's an even bigger relief, she added with a laugh, because she's due to give birth to twins any day now.

Sunday had been like celebrating a type of "double Father's Day," she said. "[This transplant] came just in time, all the way around."

Her husband was recovering in the intensive care unit Monday, and "doing really well." He was awake and recognized his family at their first visit, and Fawkes-Kirby hopes he can be moved to a regular ward today.

It'll take about a year for her husband to get back to his old self, she said. But he'll be able to take care of and play with his kids, and get back to jogging with his wife.

"That's one of the things, definitely, we're excited to be able to get back to doing."

Though Kirby's transplant was one of a few that took place in the past week, only 17 per cent of British Columbians — or 756,000 people — are registered donors.

"That's something we're just starting to think about — how totally appreciative we are that whoever his donor was had taken the time to sign up," Fawkes-Kirby said. "[He or she is] just an awesome person."

Her husband was getting worse the last few months, and "it was time. It had to happen," she said.

"It would have been a way harder road if this donor hadn't come up when [he or she] did.

"That couple of minutes that he or she took [to sign up] totally made a huge difference to Chris."

The couple is thinking about others waiting "on pins and needles" for either themselves or their loved ones to get the same call her husband did.

As of last month, 322 people in B.C. were waiting for organs such as lungs, kidneys, pancreases and livers. Nine were waiting for a heart, and another nine had their transplants this year.

"B. C. Transplant encourages all British Columbians to register their decision on organ donation," said spokeswoman Gabrielle Nye, even if you do not wish to donate.

It takes a few minutes and a CareCard to register online at http://www.transplant.bc.ca

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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

Tuesday, June 22, 2010

Transplanted organs are often far from perfect

By MONIFA THOMAS Staff Reporter Chicago Sun-Times

The death of a 28-year-old British woman who contracted pneumonia after receiving a lung transplant from a donor who had smoked for 30 years sparked an uproar.

But the practice of transplanting organs from donors with less-than-ideal medical histories, such as smokers and cancer survivors, isn't unusual and is, in fact, a necessity, given the shortage of donor organs, transplant specialists say.

"In a perfect world, if we were able to build organs from scratch . . . everyone would get a perfect organ," says Dr. Giuliano Testa, director of liver transplantation at the University of Chicago Medical Center. "But those perfect organs in nature are only in a minority of cases."

Organ donors who are HIV-positive or who have actively spreading cancer are automatically ruled out for transplants. But transplants involving donors who have just about any other chronic medical condition are still possible, according to the United Network for Organ Sharing.

Transplant centers make decisions on whether to use organs from donors with pre-existing medical conditions based on factors such as how ill the would-be recipient is, how likely it is another organ would be found for that person and whether there's a risk of disease transmission from the donor, says Dr. Michael Ison, a specialist in transplant infections at Northwestern Memorial Hospital who chairs the organ-sharing organization's Ad Hoc Disease Transmission Advisory Committee.

Disease transmission from donated organs is extremely rare, occurring in 0.2 percent of cases, Ison says. The United Network for Organ Sharing requires organ donors to be tested for HIV, hepatitis B and C and the Epstein-Barr virus.

The transmission of HIV and hepatitis C to four transplant recipients in Chicago from a single donor in 2007 were the first known cases in two decades.

A far greater risk for people on the transplant waiting list is dying because they didn't get a transplant. There are currently more than 100,000 people on the waiting list for an organ transplant. About 25,000 people receive transplants each year, while on average 18 people a day die waiting.

"All of transplantation is a cost-benefit ratio," says Dr. Howard Sankary, chief of intra-abdominal transplantation at Loyola University Medical Center in Maywood. "If a liver patient is going to die from their liver disease, and there's no other organ available, you would take the less-than-perfect organ because they have a chance of living."

People in need of organs are usually informed of the potential risk of disease transmission from donors when they join the transplant waiting list, Ison says. If a potential problem with a donor is identified, it's also standard policy for recipients to be notified of these issues at the time an offer is made. Ison says patients usually have one hour to decide if they'll accept the organ, though Testa says he gives his patients longer to decide.

"The majority of patients that are offered this are more than willing to accept that organ, and even in many of the disease transmission cases . . . many people still say they don't regret accepting the organ," says Ison, who is conducting a study on the subject.

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 21, 2010

One life lost, another saved

Here we read the story of a donor family who received a thank you letter from the recipient of their loved one's lungs. It is heartwarming to read and as this grieving father says "Be an organ donor. Give someone else a chance even if your own luck has run out." Register to be a donor at the bottom of this page. Thanks.

By Tom Oleson Winnipeg Free Press

The last three months have been the most difficult of my life. My youngest son, Kristofer, died in an accident on March 24. He fell, or was pushed, from the third-floor landing of a rickety outdoor staircase that led to the apartment where he and his girlfriend and their newborn son, Jaxson, lived in St. Boniface.

Curiously, since then he has been everywhere in my life, in his sisters' lives and, perhaps most painfully, in his mother's life. There is a special bond that exists between mother and son, and is extraordinarily hard to break. All bonds are hard to break, however, and I see Kris and am reminded of him and my hopes for him, his ambitions for himself, everywhere I go and in everything I do. It is a special kind of grief that always hurts but which, perversely perhaps, you don't want to lose because then you would lose something of the person.

So it has been a hard three months for everyone. The hardest hours were in the hospital. When we arrived there, the doctors told us there was no chance Kris would live -- his brain had been too severely damaged in the fall. The nurses told us he was on life support until he could be proclaimed brain-dead, and then, because he had wanted to be an organ donor, he would be kept on a ventilator until his organs could be harvested. He was soon brain-dead. There can hardly be a more bizarre, almost hallucinogenic experience than sitting by your dead son's bed for several hours and watching him still breathe, his chest rising and falling as if he were only asleep. It was as surreal as an acid flashback, until they finally came for him. There were moments when I wished he had never wanted to be an organ donor so we could end this agony -- not Kris's agony, he was beyond pain, but mine.

But everyone since then has learned to cope in his or her own way. And then this week we received a letter from Transplant Manitoba, Gift of Life, the organization that co-ordinates organ transplants from Manitoba with the rest of North America -- a kidney harvested in Winnipeg might find a new home in Florida, for example, so precisely is the process programmed.

They were forwarding us a letter from someone somewhere who had received Kris's lungs. Publishing readers' letters is usually a lazy columnist's cop-out, and I have never done it before, but I am a lazy man and I am going to print this person's letter here. The letter is anonymous, but verified by Transplant Manitoba and there is no indication of whether it is from a man or a woman, young or old, but the sentiment it expresses is clearly beyond all that:

Dear Donor Family,
Words cannot express my deepest feelings of gratitude for the gift of lungs I received because of your loved one's death. While you were grieving the loss in your family, I received the opportunity to be able to be with my loved ones a while longer. Thank you for your courage in making the difficult choice to consider the good of others in your own painful time.
I will always treasure the gift I and my loved ones received from your family. At the time I received my transplant I was not expected to live beyond a few weeks, so when I heard that I was to receive new lungs, it felt like a miracle for me. My life has been touched by your incredible generosity, and I will value every day I am given.

My prayers will always be with you, both in the hope that you will receive God's love and comfort in your time of loss, and in thankfulness that you reached out to help someone else in your time of tragedy. The world is a better place because of your loving act. I am left with the simple words, thank you.

With heartfelt thoughts and prayers for you, and deepest thanks for the gift of life,
A Grateful Recipient.

That was a hard letter to read. It brought back every moment of anguish and pain. But then it brought some comfort. There is a school of thought -- I don't subscribe to it because it is patently absurd -- that there is such a thing as cellular life, and organ recipients can assume the traits of their organ donors -- a vegan, for example, who has received a lung transplant, might wake up wanting a hamburger for dinner.

I don't believe it, but there is some comfort in it. It helps you think that a lost loved one lives on somewhere. But you don't have to believe in nonsense to get that comfort. The very fact that your loved one's organs are allowing other people to live means that your son -- or you -- is living on. Kris was right and, I, in my self-pitying grief, was wrong. Be an organ donor. Give someone else a chance even if your own luck has run out.

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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

Saturday, June 19, 2010

Erik Compton competes in U.S. Open after 2nd heart transplant

Erik Compton's return to golf after his 2nd heart transplant is an awe-inspiring example of how wonderful life can be after an organ transplant. Organ donation not only saves lives but can be life-transforming. Please register to be an organ and tissue donor so that others may live. Register to be a donor at the bottom of this post.

By RANDALL MELL Senior Writer, GolfChannel.com

PEBBLE BEACH, Calif. – Erik Compton put together the most remarkable performance in the history of the U.S. Open Thursday at Pebble Beach.

Forget Johnny Miller’s 63 in the final round at Oakmont in ‘73.

Or Hogan’s return from a nearly fatal car accident to win at Merion in ’50.

Or Tiger Woods’ victory on a blown out knee at Torrey Pines two years ago.

Or even Francis Ouimet’s upset of Harry Vardon and Ted Ray at The Country Club in Brookline in 1913.

The U.S. Open was witness to its first real miracle here at Pebble Beach the moment Compton put his peg in the ground before his first tee shot.

Compton’s overcome more than any man who’s ever played the 110 renditions of this championship.

That’s why the 77 he signed for didn’t add up.

It’s why it made no sense that five hours of the most awe inspiring golf ever played could be summed up so unremarkably.

It’s why it didn’t seem fair that his heroic effort could leave him so desperate to make the cut.

“I’m so angry,” Compton said. “I wasn’t nervous out there. I felt comfortable. I just wish I had gotten off to a better start because I’ve got a lot of work left.”

What’s behind is quickly turned away from to focus on what’s ahead. It’s a way of life for Compton.

While courage is normally too large a word to describe what it takes to play any golf shot, it fits the nature of every shot Compton’s ever played, since the day he received a new heart as a 12-year-old and became the youngest heart transplant recipient at the time at Miami’s Jackson Memorial Hospital.

Golf’s the sport he took up under his doctors’ watchful eyes to help him recover.

It’s the game that makes his new heart seem so mighty to all those fearful souls who wonder what their lives will be like after a transplant only to have doctors tell them about the rich and wondrous life Compton’s lived after his transplant.

Check that, after his transplants.

Because everyone who’s followed Compton’s journey to this U.S. Open knows he’s barely two years removed from his second heart transplant after a heart attack nearly killed him in the fall of ’07.

Compton, 30, might have left the course Thursday frustrated by his round of three birdies, five bogeys and two double bogeys, but his longtime swing coach and friend Jim McLean understood how the round wasn’t distinguished by the nature of the shots played but by the nature of the man playing the shots.

“He’s my hero,” McLean said. “When I saw him lying in the hospital after the last transplant, I didn’t think he would make it. God’s honest truth, the doctors told him playing professional golf was out. It would be too much for him.”

Too much pressure on the new heart, too much angst in the touring pro’s life, and yet five months after the second heart transplant Compton teed it up in a first stage PGA Tour qualifying tournament.

It’s why miraculous, for the first time, is appropriate in describing shots being played in a U.S. Open.

It’s why McLean’s cell phone started humming after Compton chipped in for birdie at his second hole in his first major championship.

With Compton making his way to the next tee, McLean dug the phone out of his pocket.

“I’m not supposed to have my phone on the course,” McLean said. “But look at this.”

McLean showed the message freshly sent from fellow Miami native Cristie Kerr, the LPGA pro who grew up marveling at Compton’s perseverance.

“How do you not cry watching Erik Compton play in the U.S. Open?” Kerr texted from the Shoprite LPGA Classic, where she was preparing to play in Galloway, N.J. “My God, it’s so unbelievable.”

Two-time U.S. Open champion Ernie Els shared the same sentiment with Erik’s father, Peter, during a practice round Wednesday at Pebble Beach. Els called Erik before the U.S. Open and asked if he would like to play a practice round together. They also played a practice round at the Memorial two weeks ago. During Wednesday’s work, Els lagged behind Erik at the ninth hole and waved Peter to come walk with him down the middle of the fairway.

“Ernie wanted me to know how much he admires Erik,” Peter said.

Those words made Peter’s heart swell. They meant so much to a father. The friendship Els has struck up with Compton means so much to the Compton family.

“Ernie said he’s been following my story since I first played at Doral,” Compton said.

When Els won at Doral in ’02, Compton was in the field, playing on a sponsor’s exemption.

“I tell Ernie he’s my hero, and he always says, `No, no, you’re my hero,’” Compton said.

That’s what made their crossing paths so notable in Thursday’s first round. The fourth and 17th tees at Pebble Beach intersect. As fate would have it, Els and Tiger Woods were coming off the 16th green when Compton was teeing it up at No. 4. Els and Woods stopped alongside Compton and watched him hit his tee shot.

“I was 5-over there, and Ernie gave me a look, like, `Let’s get it going,’” Compton said.

Compton strafed a 4-iron to the middle of the fourth fairway, his 13th hole of the first round, but he couldn’t spark a run down the home stretch. It left Compton so angry he marched to the driving range after his round to work on hitting a draw because his fade got him in too much trouble.

“I get so competitive, I want to win so badly, sometimes I think I want it too much,” Compton said. “It’s hard to appreciate what I’ve achieved when I’m out there on the course. I’m pushing so hard.”

That kind of stubborn determination is what makes Compton’s family and friends marvel.

Compton’s wife, Barbara, faithfully followed Erik’s adventures Thursday. She says their 16-month-old daughter, Petra Ella, is just like her father.

“They both want to show you how determined they can be, how tough they are,” Barbara said. “You try to take Petra’s hand, and she won’t let you.”

Christian Compton, Erik’s older brother by three years, knows that stubborn determination. Christian is a project manager for Royal Caribbean, the cruise line. He helped build the Oasis of the Seas, the largest cruise ship in the world. He surprised his brother flying in this week from Finland to watch the U.S. Open.

“I can still remember so clearly the day we first learned Erik needed a heart transplant,” Christian said. “I remember Erik, he was 12, coming home from the doctor with this huge bag of toys, saying how lucky we were to have all these toys, and I remember him saying, `Come on, let’s play.’ And I remember seeing my mother cry when he said it, and I knew something was really wrong.”

The whole family’s together at Pebble Beach this week.

Eli Compton, Erik’s mother, devoted herself to the work of helping families needing organ transplants after Erik’s first surgery. She’s the executive director of the Transplant Foundation of Miami.

While so many fans of Erik tell Eli how they admire his fearless nature, she knows that’s not the true nature of his gift. Erik knows fear. He knows it all too well. She sees how he’s learned to live with fear as a constant companion. His special gift, she knows, is how he keeps figuring out how to beat it.

“Erik gets scared,” Eli says. “He has palpitations, and they do make him afraid.”

This week, fans are marveling at the vital looking young man who’s overcome so much to play in his first major championship, but they can’t fully appreciate just how much. They can’t see how far Erik’s really come because they don’t know how low he’s really been and the risks that lie ahead.

After making the cut at the Memorial on a sponsor’s exemption two weeks ago, Erik shot 82 in the final round. He was exhausted and frustrated. He was also so down about his finish he was going to skip the 36-hole U.S. Open qualifier he was scheduled to play the next day.

“He called home and told us he was going to quit golf,” Eli said. “We were so concerned about him, but, of course, he played and qualified. I tell you, two weeks ago, we couldn’t have imagined being here at this U.S. Open.”

That’s what made the news that he advanced through the U.S. Open qualifier in Springfield, Ohio, in a playoff so emotional.

“My dad was crying on the phone when he told me in Finland,” Christian said.

This U.S. Open seems an impossible reality when the family thinks back to the heart attack that led to Erik’s second surgery. He was stricken in a hospital waiting room in Miami, where he drove himself upon feeling ill. He’d probably be dead if he had been anywhere else when the heart attack struck.

“Waking up in intensive care after the last heart transplant, with all these tubes coming in and out of him, with all these monitors beeping, in that time when you're first trying to bring your mind and body back, it was very tough on him,” Eli said. “At one point, he was bent over, really struggling to support himself, or move, and he says, ‘I can't believe I’ve put myself through this again.’ It was one of those moments when it’s so bad, you don’t think it’s worth it, but it was a short moment. When your mind and body do come back, you realize how happy you are to be alive.”

This getting back up to fight, it isn’t just Erik’s story. It’s the whole Compton family story. Christian broke his neck back when he was in college in a snowboarding accident. He was temporarily paralyzed, though he’s nearly completely recovered, some minor nerve damage the only remnant of the frightening fall.

“In my family, a broken neck’s not enough to complain about,” Christian said.

Eli’s a cancer survivor. She was diagnosed with breast cancer seven years ago.

“We know what it is to be afraid, to be crazy with fear sometimes, but we’ve learned that you can’t let it take over your life,” Eli said.

Erik’s story is a hopeful one for so many folks who are afraid as they wait for their own heart transplants. He’s an example of what’s possible.

Christian said he was heartened walking among the gallery Thursday.

“Erik’s raised so much awareness about heart transplants and the importance of organ donors,” Christian said. “Everywhere I go, you hear people saying, `Oh there’s the kid who’s had the heart transplants.’ It’s funny how the story grows, though. I heard this one guy say, `Oh that’s the guy who’s had five hearts.’”

For the record, it’s three hearts, including Erik’s original, and that’s the number that makes Compton’s performance in Thursday’s first round of the U.S. Open the greatest this championship’s ever seen, not the number he scrawled on his scorecard.


“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 17, 2010

Smokers' lungs being used in transplants

Cystic fibrosis sufferer Lyndsey Scott in February 2009 received a double lung transplant from a donor who had smoked for three decades. She died 5 months later of pneumonia. Now there's a huge outcry as to why a smoker's lungs were used for a transplant. Critics are calling for a ban on the use of smokers lungs, but are these critics (who are not transplant surgeons or medical staff) wrong? There's a severe shortage of donor lungs for transplantation and 20 to 30 percent of patients waiting for a transplant die before getting one. Donor lungs are given strict testing and scruitny before being deemed viable for transplant and if lungs from smokers were not used, after being cleared for transplant, possibly thousands more patients would die before ever getting their second chance at life. I would say that lungs from smokers are preferable to no lungs at all if they will save lives, wouldn't you?

UPI.com
NEW YORK, June 16 (UPI) -- There is outrage in England because a lung-transplant patient received donor organs from longtime smokers but doctors say that happens frequently.

A British woman who was given the lungs of a 30-year smoker in a double transplant died from pneumonia nine months later. Her family says surgeons should have told them more about the organs' condition.

However, given the scarcity of donor organs, medical experts say lungs of smokers are not off limits and such donations can still be lifesavers, ABC News reported Wednesday.

"We really don't tell patients that much about organ quality, partially because it's difficult for them to gauge risk," says Dr. Michael Volk, an expert in patient-physician communication at the University of Michigan.

"Patients are aghast that we would give them anything but the best," Volk said, "but they don't understand what to us as transplant physicians seems obvious: if you offer patients only the best quality of organ, than you wouldn't transplant many organs, and more people would die on the waiting list."

With organ waiting lists growing longer and critical shortages of donor organs, "we are pushing the boundaries with marginal donors," Dr. David Cronin, associate professor of surgery at the Medical College of Wisconsin, says.

"You can't expect transplants to be risk- and death-free," Cronin says, "but the consequence of not enough organs is certain death."

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 16, 2010

Fundraisers planned for Florida man who needs second kidney transplant

I'm always happy to promote fundraisers for transplant patients because I know about the financial hardships that are placed on recipients and their loved ones in addition to the worries about the transplant itself. As the story notes, a kidney transplant costs approximately $250,000. Even with health insurance, this Florida man faces significant medical expenses. He will need follow-up care and daily anti-rejection medications for the rest of his life. The cost of post-transplant medications can range from $2,000 to $5,000 per month, and they are as critical to his survival as the transplant itself. Thanks to the National Foundation for Transplants (NFT) for helping David Kendrick in his time of need just as they've done for other patients during their transplant journey, assisting more than 1,000 patients.

news-press.com
Volunteers, friends and family are conducting various fundraisers for Cape Coral resident David Kendrick, 30, who is waiting for a lifesaving kidney transplant.

There will be yard sales from 8 a.m. to 1 p.m. Saturday, June 26, at 9350 Camelot Drive in Fort Myers and 1261 Viscaya Parkway in Cape Coral. Furniture, electronics, clothing, toys and much more will be available.

Friends and family are also planning a dinner from 5 p.m. to 9 p.m. Saturday, July 10, at the Masonic lodge, 244 Santa Barbara Blvd. in Cape Coral. Tickets are $10, and the event includes dinner, an auction and drawings for various prizes. Tickets should be purchased by July 1.

A kidney transplant costs approximately $250,000. Even with health insurance, Kendrick faces significant medical expenses. He will need follow-up care and daily anti-rejection medications for the rest of his life. The cost of post-transplant medications can range from $2,000 to $5,000 per month, and they are as critical to his survival as the transplant itself.

When Kendrick receives his transplant, he and his wife, Christy, and their daughter must temporarily relocate more than 250 miles to be closer to the transplant center in Gainesville, incurring substantial travel expenses.

To help offset these expenses, Kendrick turned to the National Foundation for Transplants for assistance. NFT is a nonprofit organization that helps patients raise funds to pay for transplant-related expenses.

For more information about the yard sales or the dinner, contact Christy Kendrick at dakendrickjr@aol.com or 239-645-9810.

To make a tax-deductible gift in honor of Kendrick, please send a contribution to the NFT Florida Kidney Fund, 5350 Poplar Ave., Suite 430, Memphis, TN 38119. Please be sure to write “in honor of David Kendrick” on the memo line. Secure donations also can be made online at www.transplants.org. Donors should click on “Patients We Help” to locate Kendrick.

For more information about NFT, call 800-489-3863 or visit National Foundation for Transplants

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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

Tuesday, June 15, 2010

Livers grown in the laboratory could solve organ transplant shortage

Many centers around the world are experimenting in their labs to find ways to repair or grow new organs and the following report gives hope for the future of liver transplantation.

I had the great pleasure of visiting the labs at the McEwen Centre for Regenerative Medicine at Toronto General Hospital, University Health Network and saw first hand the exciting experiments the scientists were doing with stem cell biology and regenerative medicine.

McEwan scientists have successfully used gene therapy to repair and recondition donor lungs that were found unsuitable for transplant. Also, researchers at McEwan are using stem cells not just to try to regenerate damaged spinal cords or hearts but to test medications on organ cells grown from stem cells. They can now generate heart cells from human stem cells and generate liver cells from human stem cells. Heart and liver transplant recipients are especially vulnerable to side effects from medications and the feeling is that new drugs could be tested in the lab before they are ever given to patients. This is an exciting time in organ transplantation as scientists are working to find ways to ease the shortage of organs for transplantation, improve medications and save more lives.


Livers could be grown in the laboratory for transplantation into humans within five years, new research suggests.

By Richard Alleyne, Science Correspondent
Telegraph.co.uk

Livers from organ donors are often too damaged to be used Photo: PA

Doctors believe the breakthrough could "revolutionize" how liver diseases are treated and also solve the shortage of organs for transplant.

The techinique could be used to recycle thousands of donated organs which are at present considered too old or damaged for transplantation.

The liver could be 'rejuvenated' using the patient's own cells, removing the need for powerful drugs to prevent the body rejecting the organ.

"The basic idea is to grow a liver in the lab for transplantation," said Dr Korkot Uygon at Harvard Medical School.

"If we succeed it will definitely revolutionise how liver diseases are treated."

More than 600 liver transplants are carried out each year in Britain, but it is estimated that more than a fifth of patients die waiting.

Many livers have to be discarded because they are too old or too damaged to be of any use.

The new technique works by effectively chemically stripping the old liver down too its basic "scaffold" or exoskeleton in a process of called "decellularization".

Onto this frame of connective tissue and blood vessels, they then regrow the new liver using stem cells from the patient. Stem cells from embryos could also be used.

The effectively brand new liver is then transplanted back into the patient.

At the moment the technique will require donor organs but it is hoped that eventually pig's livers or artificial scaffolds can be used instead – effectively avoiding donors altogether.

The technique is very similar to one used in replacing the windpipe of Claudio Castillo two years ago in Spain but because the liver is a more complicated organ it has taken longer to develop.

Dr Uygon and his team's breakthrough is to perfect the technique in rats.

"This scaffold retains for the most part the detailed microarchitecture of the liver, including essential structures such as the blood vessels," said Dr Uygon.

"We take advantage of this remaining structure to repopulate the scaffold with liver cells to recreate a functional liver.

"As we have shown this re-engineered liver performs the most essential liver functions in the lab and can be transplanted into rats and stays intact, with the cells able to survive."

He said he was "cautiously optimistic" but there were still hurdles to overcome.

"If all goes well, to be doing this with humans in 5-10 years is quite possible, which is why this is a significant step forward," he said.

"But tissue engineering was promised to deliver such tissues grown in lab before, and it didn't do quite do so well, which is why I'm trying to be cautiously optimistic."

Dr Martin Yarmush, co-author of the study in Nature Medicine, said the quarter of a million donor livers discarded each year because they are not suitable for transplantation would be an obvious source of supply for the creation of these scaffolds.

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 13, 2010

Canadian woman in line for 'domino' kidney

54-year-old to undergo 4th transplant

BY SONJA PUZIC, The Windsor Star

WINDSOR, Ont. -- Since she was 16, Debbie Storie has depended on the sacrifices of others to survive.

After suffering kidney failure, she received a kidney from her sister but her body rejected the organ immediately. Storie then received another kidney from an unknown young man killed in a motorcycle accident. Her body rejected that one as well.

Then came the gift from the anonymous family of a little boy who died tragically. His kidney carried Storie for nearly 30 years -- a rare feat. But the organ's lifespan has come to an end and Storie, 54, needs a fourth transplant.

Although she didn't want to ask another family member to go through the physically and emotionally draining process of organ donation only to risk another rejection, Storie's brother-in-law, Larry Vandelinder, offered one of his kidneys. Problem is, he's not a close enough match and Storie is considered a high-risk transplant recipient because of her previous rejections.

But thanks to a relatively new Canadian Blood Services program, Storie will still get a viable kidney and Vandelinder's will go to someone else who desperately needs it.

The national Living Donor Paired Exchange Registry facilitates swaps between pairs of kidney donors and recipients based on compatibility of blood and tissue types. That means Vandelinder's kidney will be swapped with that of an anonymous donor who is a better match for Storie and go to an unknown recipient matched with Vandelinder.

"It's an amazing program that I don't think many people even know about," Storie said. "It's given me another chance. My brother-in-law has just been amazing. The fact that he's giving up a kidney doesn't seem to faze him. He just wants to help."

Storie is scheduled to receive a new kidney as part of a so-called "domino" transplant, involving eight pairs of donors and recipients in different parts of the country. That number could change if one or more people back out or are unable to go through with the procedure. Vandelinder will fly out to Vancouver to have his kidney removed there, while Storie will go to the London Health Sciences Centre for her transplant on the same day. The transplants are expected to take place in about two months.

Organizing multiple kidney transplants through the paired exchange program is a "huge, complicated" process, involving massive co-ordination between operating rooms and surgeons across the country, said Canadian Blood Services spokesman Chris Brennan.

"It's worked out down to the last minute because we want all the transplants to happen at the same time," he said.

While domino transplants can be arranged if everything falls into place, kidney exchanges involving just two pairs of donors and recipients are more common, Brennan said.

The paired exchange registry has been "very successful" so far, resulting in 37 transplants, Brennan said. There are 107 pairs on the registry and that number is expected to increase as the program expands to other provinces. Pilot transplant programs through the registry were done in Ontario, Alberta and British Columbia.

Storie said she is grateful for all the people who've joined the registry because she was matched with a donor shortly after adding her name to the list. Storie's family and friends will be holding a fundraiser to help offset all the travel costs involved, including Vandelinder's plane ticket to Vancouver and hotel bill.

The Living Donor Paired Exchange Registry is expected to increase live kidney donations in Canada by 20 per cent or more. Currently, about 35,000 Canadians suffer from kidney disease and 3,000 people are on waiting lists for a kidney transplant.

A pasta and chicken dinner fundraiser for Debbie Storie and her family will be held June 26 at the Moose Lodge, 777 Tecumseh Rd. W. Tickets are $15 per person and can be purchased at the door or in advance at the Windsor Family Credit Union or the Ukrainian Credit Union. Tickets can also be ordered over the phone at 519-979-4295 or 519-948-9108

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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

Saturday, June 12, 2010

Nephrology In Canada Is Well Supported

By Andeera Levin, MD - Renal & Urology News

Many Americans harbor fears about the Canadian health care system, and I would like to clear up some misconceptions. A fundamental premise of the system is that all Canadians are entitled to health care as a right, not a privilege. Health care access is based on medical necessity, which generally means all services excluding cosmetic procedures, certain aspects of ophthalmology, and dentistry. The Canadian system is government funded, not government run. Canada's federal government sends money to each province, which then develops a health care budget based on data available to them. Physicians are mostly independent fee-for-service practitioners who bill one payer (the government). Canadians may have waiting lists for non-essential tests and procedures, but no Canadian is denied care based on age or economic or employment status.

The Canadian system is a cost center for the government. As such, the system emphasizes prevention to contain costs, with the goal of ensuring that the entire system remains intact. In contrast, in the United States, various health care institutions are profit centers for shareholders. In Canada, CKD patients who are progressing and are medically eligible are offered pre-emptive transplants. All nephrologists have reasonable access to dialysis and transplantation for their patients. They do not own dialysis units, which avoids conflict regarding referral and potential loss of revenue. The reduced societal costs of transplantation compared with dialysis provide incentives to facilitate transplantation. Patients who require dialysis services have access to them. From time to time, that access may not be as convenient as the patient wants because of scheduling or location, but overall, the system serves the patients well.

In addition, the myth that Canadian doctors are underpaid and resources are severely constrained is simply unfounded. The average salary for academic nephrologists in Canada is around $350,000, with higher incomes for those in non-academic positions.

The Canadian system is not perfect. Inefficiencies, provincial boundaries, and differential budgets lead to inequities and disparities in care across the country or across geographic regions. But despite growing challenges to the Canadian system, the fundamental tenant of that system—that all Canadians are entitled to health care—is as Canadian as the maple leaf.

Dr. Levin is Clinical Associate Professor of Nephrology at the University of British Columbia in Vancouver.

“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 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 (see allotransplantation). One tissue donor can help 75 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 - 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, June 11, 2010

British woman's liver disease makes her look pregnant

By Jenna Sloan The Sun



STARING into the TV camera, Kerrianne Phillips looks resigned to her fate.

A prison door bangs shut on her small room, but the pretty 22-year-old hasn't been jailed.

Kerrianne is in fact the star of a new telly advert which depicts those on the transplant list as living on death row.

Diagnosed with progressive liver disease as a child, Kerrianne's condition has made her body balloon and now she looks nine months pregnant.

In another life her face could have graced the covers of fashion magazines and billboards.

A top New York model scout spotted her while she was on holiday eight years ago.

Her dreams of a catwalk career were never possible.

But here she is, finally in front of a camera in an advert for The Kidney Wales Foundation.

The commercials hope to raise awareness of the lack of organ donors and to prompt debate on an opt-out system.

In this scheme, all Brits would be automatically classed as organ donors UNLESS they indicate otherwise.

Some experts expressed alarm at the statistics, adding that 100 people die every year waiting for a life-saving liver transplant.

Kerrianne, who lives near Aberystwyth, Dyfed, has a rare liver condition called Glycogen Storage Disease Type A.

Her liver cannot break down sugar, which causes her intense pain, periods of unconsciousness and frequent hospital admissions.

The organ has also ballooned and is still growing.

Here Kerrianne, who lives with her mum Clare, 43, a waitress, and siblings Hannah, 17 and Thomas, 12, writes a moving open letter to anyone thinking of joining the donor register and explains why a new liver would be the ultimate gift for her and her family.

Dear Reader
I'M writing to you sat in the spare bedroom at my mum's house. I can't tell you how nice it is to be home - especially after spending almost 18 months in hospital.

But what I really want is my own life back. Before my condition started to go seriously downhill, I rented my own flat and had it done up just how I wanted.

But I had to give it up after my doctors told me it was too dangerous for me to live on my own.

My liver can't break down sugar - it stores it instead. That sends my blood sugar levels haywire, meaning I can pass out at any moment. It also causes my liver to grow and swell.

At the moment it weighs two stone (28 pounds) and I look like I'm nine months pregnant. It presses down on my pelvis and wraps itself around my kidneys. It crushes my diaphragm so it hurts even to breathe or lie down.

A transplant would transform my life in a million ways, but just one would be that I'd be able to get back to being a normal size again.

On the rare occasions I've been allowed out of hospital over the past year and a half, I've been on shopping sprees to Matalan and New Look.

But I hate the fact I can't wear any of the new stuff I've bought because my liver just keeps growing.

I live in a small town in the middle of rural Wales and people make assumptions about me all the time.

Old ladies call me names thinking I'm an expectant teen mum.

I'd love to go on a girly holiday or travel anywhere. But I'm just too ill.

I've only left the country once, to go to New York with my grandad to visit family, eight years ago. While there, I was spotted by a model scout in the street who said I could have a future in modelling but look at me now. There's no chance of that.


Goodbye

This isn't the only letter I've had to write.

Doctors have advised me to write to my friends and family, a goodbye note for after I've passed away. It's like writing a suicide note when you don't want to die.

How do you even start? I've done one for my best mate but I can't face the thought of writing to my mum, my sister or my brother.

Thomas is only 12, and I've agonised over what to write to him. It has to be as relevant to him now as it will be in 50 years. If I did die it would hit him really hard. It's too much to get my head around. For most of my life doctors have been giving me weeks to live but I try not to think about it and take one day at a time. I'm used to proving them wrong. My mum brought me up not to whinge or moan and I've dealt with my illness myself since I was a child.

But I would love a job. If I got a new liver I hope I'd be able to work. I passed seven GCSEs but I've been in hospital so much since I was 17 I haven't been able to go to college.

I dream of being a nurse or working with children, but I don't have any experience and I'm knackered walking just 50 yards.

I know for me to get my life back, someone else would have to lose theirs. It's horrible to think of.

But I have to emotionally detach myself to deal with it. And whatever I'm feeling would never come within a million miles of what the donor's family would be going through.

But I'd want them to know that their gift has given me my life back. I don't know if I could say thank you enough.

I'd just like YOU to think about adding your name to the organ donor register, to think about helping someone like me should the worst happen to you.

A new liver would be best gift I could ever wish for. With love and thanks,
Kerrianne x



“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 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 (see http://en.wikipedia.org/wiki/Allograft">allotransplantation). One tissue donor can help 75 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 - 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