Living with Cystic Fibrosis

Many of my lung transplant friends are CF patients and this article is a good overview of what it means to have Cystic Fibrosis.

By Truneal Rogers The Barbados Advocate

A death sentence. Those are the cards that are dealt when you are diagnosed with Cystic Fibrosis [CF]. Even though some individuals afflicted with the disease live to celebrate their 40th birthday, most die in childhood or barely see their 30s. Around 30 000 Americans of Eastern Europe, German and European descent have CF.

It begins with one abnormal gene. This was in 1989 and with it the fact that CF is hereditary. Coughing, wheezing, poor growth, repeated bouts of pneumonia and serious swelling of the feet and hands are just some of the symptoms that CF victims suffer with.

CF affects the way that sodium chloride [salt] would normally move in and out of vital cells. These include those cells that line the pancreas and the lungs.

The result? Thick, sticky mucus, among other secretions, which causes problems when you breathe. It also gives bacteria a breeding ground, which leads to lung infections that can contribute to an early death. Also, thick digestive fluids clog the ducts which lead from the pancreas to the small intestine. This irrevocably hampers the digestive process, which gives way to stunted or slow growth.

Another sad fact is that 97 per cent of men with the disease are infertile. Although some women can become pregnant and do have a healthy pregnancy, most have trouble conceiving. They are usually in close contact with their obstetricians as they will need continued specialised care.

A blood sample, saliva or sweat is used to ascertain the status of health. Taking into consideration the growing prevalence of CF, many children are diagnosed within the first six months of their life, if they haven’t been tested as a foetus.

Genes come in pairs. A child must have two CF genes. One from the mother and one from the father, both of who must also be “carriers”. A “carrier” is one who carries one normal gene and one abnormal gene. When both parents carry an abnormal CF gene, there is a one-in-four chance that the child will have Cystic Fibrosis. Fifty per cent will be a “carrier” like their parents and a 25 per cent chance that the child will be free of the abnormal gene. Pre-natal tests, however, cannot tell you the severity of the unborn child’s condition.

Since the quantity of life for CF sufferers is unpredictable at best, the doctor’s goal is to provide the best quality of life. Intravenous, inhaled and oral antibiotics are used to aggressively treat and control the infections. Mechanical devices such as a ThAIRapy Vest and mask nebulizer and inhalation medications are employed to alter and clear the thickened mucus from the lungs. In addition, lung transplants and gene therapies aim to cure some
effects.

“Woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die.” Swiss and German literature from the 1970s told the fate of those with Cystic Fibrosis. Even though counselling is provided for those expecting a baby with CF or those who have been living with the disease for years, we can only take a page from the Cystic Fibrosis Foundation. We must make sure that we are continually “adding tomorrows every day”. What more can one ask for?

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

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

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

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

I wish everyone Happy Holidays and all the best for 2009

Liver transplants from elderly donors are safe

Reuters

NEW YORK (Reuters Health) - Advanced donor age, per se, does not adversely affect the transplant recipient or the survival of the organ after liver transplantation, according to a report in the Journal of the American College of Surgeons.

Previous reports have indicated that the age of the donor -- older than 60 years - contributes to decreased organ and patient survival, as well as a poorer quality of life for the recipient, the authors explain. They hypothesized, however, "that proper selection of donors older than age 60 and even over age 70" can produce outcomes comparable to those obtained with younger donors.

Dr. William C. Chapman and colleagues from Washington University School of Medicine, St. Louis, Missouri, analyzed their experience with 741 adult-to-adult whole organ transplants -- 91 donors were 60 years or older and 650 were younger than 60 years.

There was no significant difference in the number of second transplants performed or signs that another transplant was going to be needed between patients who received organs from younger and older donors, the authors report.

Overall survival rates did not significantly differ between the two groups of patients, the researchers note. Five-year survival, for example, was 67.6 percent in the patients who received organs from older donors compared with 75.5 percent in those who received organs from younger donors.

Similarly, organ survival was not significantly different between recipients of organs from younger and older donors, even when the donors were separated into three age groups - younger than 60 years, 60 to 69 years and 70 years or older.

Time between organ removable and transplant was significantly shorter for organs from older donors than for organs from younger donors, the report indicates.

"Our analysis was not able to identify any significant disadvantage in graft or patient survival based on donor age," the authors noted.

Other donor risk factors, such as time from organ removal to transplant and variables associated with the recipient are all "important to ensure optimal outcomes" of transplants from older donors, they add.

Overall, the investigators conclude that "older donors represent an important and safe expansion of the donor pool."

SOURCE: Journal of the American College of Surgeons, December 2008.

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

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

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

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


I wish everyone Happy Holidays and all the best for 2009

Couple who lost daughters in crashes promote organ donation

About promoting organ donation, Jayne Stanyon says, "I truly feel my girls guiding me." Here she visits a children's hospital in Loma Linda.
Photo: Stan Lim/ The Press- Enterprise

By MELISSA EISELEIN The Press-Enterprise

Jayne and Peter Stanyon know the pain of losing a child.

Both of their children were killed in separate car crashes.

Helping other people has helped the couple cope with their loss.

"I truly feel my girls guiding me," Jayne Stanyon said.

Last week, the Canyon Lake couple took toys to children in the solid organ unit at Loma Linda University Medical Center Children's Hospital.

The unit cares for children with heart, kidney and liver problems, including those who recently had transplants and some who are waiting for one.

"It means a lot to the family to know someone outside the hospital cares," said Dorothy Clark-Brooks, child life specialist at hospital. "Some of the parents don't have time to go shopping or they don't have the funds to buy gifts."

The Stanyons were joined at the hospital by Sergio Gomez, a 2005 kidney recipient from Huntington Park, and Sonia Navarro, a representative of One Legacy with offices in Redlands and Los Angeles.

One Legacy is a nonprofit organ-donor network agency that serves seven Southern California counties, including San Bernardino and Riverside.

One Legacy works with Donate Life, a national organ-donor registry, to match donated organs with people in need.

Giving gifts to hospitalized children was Gomez's idea, a thought born out of his own stay in the hospital, he said.

"I spent time in the hospital one Christmas. I wasn't able to go shopping for my children," Gomez said.

When the Stanyons learned what Gomez was doing, they immediately got on board. Their Heart-to-Heart organization donated $1,000 toward the toy purchase, Jayne Stanyon said.

Heart-to-Heart is a nonprofit organ-donor awareness group the Stanyons started after their second daughter was killed.

In 2003, the couple's oldest daughter, Kirsty Stanyon , 22, died instantly in a crash on Interstate 5 in Corona.

Two years later, their second daughter, Hollie Fouts, 20, died shortly after a collision in Menifee.

"When the doctor told me Hollie wasn't going to survive, I just couldn't believe it was happening again," Jayne Stanyon said.

When a representative from One Legacy came to Stanyon to ask if she was willing to donate Fouts' organs, she immediately agreed because she knew it was her daughter's wish.

"She wanted to be a pediatric nurse. She wanted to save children's lives," Stanyon said.

Fouts' organs were transplanted into six people, including a Wildomar woman who sends the couple a card every Christmas, Stanyon said.

Whenever the opportunity arises, Stanyon speaks out for organ donation.

She wears three rubber bracelets, two pink, one for each daughter, and one green with the words Donate Life.

People often ask about the bracelets, which give her an opportunity to tell her story she said.

On New Year's Day, Donate Life will have a float in the Rose Parade decorated with the likenesses of several organ donors.

Fouts will be among those depicted on the float. The Stanyons recently decorated their daughter's floragraph with petals and seeds.

Gomez will be among the organ recipients riding on the float.

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

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

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

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

I wish everyone Happy Holidays and all the best for 2009

Santa, I Need a Kidney

Quinn Roberts

POSTED BY: JULIE WOLFE 11Alive.com

Seven-year-old Quinn Roberts loves playing Barbies. "This one is my favorite!" she declares with a gapped-tooth smile.

This year, she didn't ask Santa for dolls... or any other toys. She asked for a kidney.

"Dear Santa," she reads. "Ok Santa. I will be good. Yesterday, I went to the kidney doctor. I did not get a kidney."

Quinn's mom Julia found the rumpled note in a school backpack. "I thought it was charming and heartbreaking at the same time," Julia said.

Quinn has Polycystic Kidney Disease (PKD). PKD is a life-threatening genetic kidney disease affecting 600,000 Americans. It causes cysts to grow on the kidneys, often leading to kidney failure. There is no cure.

Quinn will need a transplant, probably within the next year. Her older brother, Gage, also has PKD. In March 2007, he received a kidney transplant after months of dialysis.

Quinn knows what's coming. She hopes Santa can help.

"Why did you ask Santa for a kidney?" 11Alive's Julie Wolfe asked.

"Well, I need a kidney," she replied with shrug.

Quinn was diagnosed when she was two days old. She's always known she was sick. There's nothing unusual about the small paper plates organizing her nightly medication. It's just past the plate of Christmas cookies for Santa.

The Roberts credit the PKD Foundation for helping them navigate through the blizzard of specialty doctors, insurance policies, and new medications.

"It's very complicated," Julian Roberts says. "It's a lot of sleepless nights. It's a lot of tears. It's a lot of anger as you deal with this process."

This Christmas, that letter to Santa reminds them what they're fighting for: a healthy kidney for Quinn.

"She just wants to live her life as a little girl," Julian says.

Julia Roberts writes a daily blog about her family's struggle with PKD. Click here to read it.

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

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

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

Your generosity can save up to eight lives 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

I wish everyone Happy Holidays and all the best for 2009

Cancer drug helps prevent organ transplant rejection

'This has significant implications for transplantation and auto immune disease,' said study co-author Steve Woodle, chief of transplant surgery at the University of Cincinnati in Ohio. -- ST PHOTO: ALAN LIM

The Straits Times

CHICAGO - A DRUG used to treat cancer has proven effective at stopping the body from rejecting a transplanted organ when other treatments failed, a study to be published on Saturday found.

US researchers administered the drug, Bortezomib, to six patients whose immune systems were attacking transplanted kidneys and who did not respond to traditional anti-rejection treatments.

In each case, the drug promptly reversed the rejection, improved organ function, provided prolonged reductions in antibody levels and suppressed recurrent rejection for at least five months.

'This has significant implications for transplantation and auto immune disease,' said study co-author Steve Woodle, chief of transplant surgery at the University of Cincinnati in Ohio.

Dr Woodle's team is currently conducting four clinical trials to expand upon these preliminary findings.

The drug's side effects proved to be both predictable and manageable and toxicity levels were much less than those associated with other anti-cancer agents, the study found.

'We are pleased to see its toxicities are similar in transplant recipients suffering from treatment-resistant mixed organ rejection,' said study co-author Jason Everly, an oncology pharmacist at the University of Cincinnati.

'We hope it will be a viable therapeutic treatment option in this patient group.'

Previous studies had found that B-cells play a large role in organ rejection by making immune proteins that attack transplants.

The drug targets these antibody-producing plasma cells and had been shown to suppress transplant rejection in the laboratory before Dr Woodle and his team tested it on patients.

The study was published in the journal Transplantation.

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

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

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

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

I wish everyone Happy Holidays and all the best for 2009

25-year-old waiting for lung transplant No. 3

Stratford, Ontario resident Julia Lyons, holding a picture of herself as a youngster, is awaiting her third double-lung transplant. SCOTT WISHART/The Beacon Herald

By Laura Cudworth The Beacon Herald

Julia Lyons doesn't want anything extraordinary -- she just wants to be able to walk down the street and breathe.

At 25 she can't do that. So for the third time in her life she'll go through a double-lung transplant.

It's likely she's the first person to endure three double lung transplants in Canada. The communications department at Toronto General Hospital didn't know whether it will be a first either in the country or at the hospital.

Nevertheless, the hospital has been a world leader in lung transplantation. The first ever single-lung transplant was completed successfully there in 1983 and the world's first double-lung transplant was completed successfully there in 1986.

Ms. Lyons was diagnosed with cystic fibrosis at four months old. The genetic disease affects multiple organs, particularly the lungs and digestive system, and is the most common fatal hereditary disease in young Canadians.

"I'm just so tired of constantly fighting, part of me wanted to say no," to the third transplant, Ms. Lyons said.

She had her first double lung transplant a month before her 15th birthday and her second when she was 20.

"Five years seems to be my mark. The first lasted five years and the second lasted five years," she said.

This set of lungs is failing because she has chronic airway rejection. Each time she gets an infection, tissue forms and starts closing off the airway. She's been hooked up to oxygen since May. Each time she's exposed to an infection it gets worse.

"I have good days and bad. Some days I sleep 18 hours and it's hard getting to the car, breathing wise," she said. "In general I'm OK, I just can't get the air in."

The surgery carries its own set of risks. There's a 10 per cent chance patients will die on the table during a transplant and a 10-15 per cent chance during a second transplant, she said. Ms. Lyons is entering unchartered territory.

"(The surgeon) said it's a guess for the third -- there's not enough data -- but there's a 20 per cent chance I'll die on the table."

She almost died 12 hours after the second lung transplant when her heart stopped. Despite the trauma and pain, when the surgery became the only option she knew she'd do it. She doesn't consider it an act of courage.

"What are the other options? It's this or a hole in the ground," she said. "Who am I to give up this opportunity? They're offering this to me, I may as well take up the opportunity that's offered."

Her illness has certainly taken a toll on her parents and siblings as well.

"They say when you have a child your life changes but when you get a sick child it turns topsy-turvy upside down," said father David Lyons.

For her part, Julia worries about the stress on her family.

"It's hard dealing with it but it must be harder being a parent when you can't do anything to help. It sucks to be in my position too, I won't deny that,"she said.

She also worries about the effect her deterioration has on her younger brother, Christian, because he also has cystic fibrosis though not to the same extreme.

She went back on the transplant list Dec. 17. Now it's a matter of waiting. She'll carry a pager from the hospital but until it arrives the hospital will call her cell phone first if a set of lungs is available.

Until then every time the phone rings it could be the call to go to the hospital.

Chances are good though she'll get to celebrate Christmas with her mom, dad, sister Emily and brother Christian in Stratford before she moves to her aunt's house in Pickering to be closer to the hospital.

The estimate is six months for lungs based on her blood type and size, she said. For the first set she waited just five weeks and for the second set four months.

"I'm hoping for four months this time, but it's the luck of the draw," she said.

Most of Ms. Lyons' medications are covered by her dad's insurance, but she needs a $250 oxygen monitor among other essentials and trips back and forth to Toronto get expensive for the family.

Contributions to the Julia Lyons Foundation trust fund can be made at Libro Financial Group and the Kiwanis Club will issue a charitable receipt.

"I want people to know I really appreciate it,"she said.

Toronto General Hospital reports 20 per cent of lung transplant patients die waiting for a transplant. Canada has one of the worst rates of organ donation in the world. It's something Ms. Lyons hopes to see change as methods for transplantation and survival rates improve.

"A lot of people are superstitious: they think if they sign they will get in a crash or if the doctor sees the (donation) card (is signed) they won't work on you as hard. That's not true," she said.

MERV'S NOTE: If you would like to send Julia your best wishes you can e-mail her at: jewels.brat@gmail.com

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

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

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

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

I wish everyone Happy Holidays
and all the best for 2009! Merv.

SEASONS GREETINGS

I wish everyone Happy Holidays and all the best for 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

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

Stem Cells Poised to Grow Organs for Transplant

Regenerative medicine describes the emerging field of biotechnology that aims to repair, replace and/or regenerate damaged tissues and organs in vivo (in the living body) by stimulating previously irreparable organs to heal themselves.

In Toronto, where I received my life-saving lung transplant, The McEwen Centre for Regenerative Medicine's vision is to be a world-renowned center for stem cell biology and regenerative medicine. To achieve this ambitious goal, the team of McEwen Investigators is working together to accelerate the development of more effective treatments for conditions such as heart disease, diabetes, respiratory disease and spinal cord injury.

Press Release
Zannos Grekos, MD Presents Clinical Data of Research with Adult Stem Cells to Physicians at International Regenerative Biomedicine Conference

MarketWatch

"Regenocyte Therapeutic is currently using Adult Stem Cells Therapy to treat Congestive Heart Failure, Cardiomyopathy, Peripheral Artery Disease, Coronary Artery Disease, Kidney Disease, Ischemic Heart Disease, Pulmonary diseases (COPD, Pulmonary Fibrosis, and Pulmonary Hypertension) and Early Senile Dementia."

LAS VEGAS, Nev., Dec 22, 2008 (BUSINESS WIRE) -- At the 16th Annual World Congress on Anti-Aging Medicine & Regenerative Biomedical Technologies in Las Vegas, Zannos Grekos, MD, director of Cardiac and Vascular Disease for Regenocyte Therapeutic, addressed physicians from around the world with a presentation on patients treated with pre-engineered Adult Stem Cells. In the presentation, Grekos showed the successful engraftment of stem cells into damaged organs and subsequent regeneration of tissue.

The clinical success has spurred a project entailing growing organs for transplant from patients' own stem cells using technology developed by National Aeronautic Space Association (NASA). In describing details of the stem cells project Grekos stated, "This is the logical next step in harnessing the regenerative power of stem cells. This will be the next phase in turning science into medicine."

The presentation also cited stem cells treatment results at one month through one year follow up. The Regenocyte team of international scientists and physicians have been treating cardiac, vascular, pulmonary, and kidney diseases, with plans next year to accept patients suffering from macular degeneration and neurological diseases.

Athina Kyritsis, MD, chair of Regenocyte's Medical Advisory Committee, explains "the findings presented today are based on several years of Regenocyte's clinical experience using Autologous Adult Stem Cell Therapy. I believe we have only begun to discover what Adult Stem Cells can accomplish in altering the course of diseases currently believed to be untreatable with not only improved clinical results, but also a financial savings to society."

Dr. Grekos also highlighted several case studies to illustrate his team's success with Adult Stem Cells. According to their findings, cardiac disease patients experience an average increase of 21% in ejection rates as well as measurable improvements in congestive heart failure class status, some in as little as one month post-treatment.

"We are able to bring patients from a Class IV congestive heart failure status to a Class II status in less than 180 days," said Grekos. Regenocyte Therapeutic's clinical data from PET scans confirm that Adult Stem Cells have the ability to engraft themselves into areas damaged by myocardial infarction (heart attacks) and turn into viable new heart muscle.

"Three months after treatment, cardiac nuclear scans of the areas treated reveal reversal of damage. We have been able to take patients off the transplant list, and we have been doing it consistently."

Most recently, physicians at the Dominican Republic division of Regenocyte announced clinical results of a 46-year-old patient with pulmonary hypertension who was treated with Adult Stem Cells. His pulmonary artery mean pressure went from 41mmHg (severe pulmonary hypertension) to 24 mmHg (normal) in six months. The patient's saturations are now consistently high and he no longer needs to be supplemented with oxygen continuously or considered for a lung transplant. Another patient was successfully treated for cardiac sequelae of Fabry's Disease, and is also no longer considered for heart transplant.

Hector Rosario, MD, chief of Interventional Cardiology for the Dominican Republic division of Regenocyte, is thrilled with the clinical outcomes to date. "It is personally very gratifying to alter the prognosis in patients who have exhausted all other options," Rosario says.

Leonel Francisco Liriano, MD, professor of medicine at Pontifical Catholic University School of Medicine and medical director of the Regenocyte Dominican Republic division added that "patient safety is always paramount. We're achieving these results with a treatment that poses minimal risk, much lower than traditional surgical procedures."

Regenocyte Therapeutic is currently using Adult Stem Cells Therapy to treat Congestive Heart Failure, Cardiomyopathy, Peripheral Artery Disease, Coronary Artery Disease, Kidney Disease, Ischemic Heart Disease, Pulmonary diseases (COPD, Pulmonary Fibrosis, and Pulmonary Hypertension) and Early Senile Dementia. Patients can call 866-216-5710 or visit Regenocyte Therapeutic for information or consultation.

SOURCE: Regenocyte Therapeutic LLC Regenocyte Therapeutic

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

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

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

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

I wish everyone Happy Holidays
and all the best for 2009!

Anonymous kidney donor gives teen the "Gift of Life"

Nothing is more heartwarming than to hear stories like this of people coming forward anonymously to save the life of a fellow human being. I've had two anonymous donors contact me recently to offer one of their kidneys and I put them in touch with the transplant centers who were grateful for these acts of kindness. Thousands of people around the world are waiting for kidney transplants in order to live and what better gift can we give?

Teen on top of world
Before his transplant, Joseph Stevens thought he "was done". Photo / Janna Dixon

By Rebecca Lewis nzherald.co.nz

Joseph Stevens has already been given the best Christmas present possible - his life.

After suffering kidney failure a year ago, the Gisborne teenager thought he "was done", but a rare anonymous donation means he's on the mend.

"I was in the hospital and the doctors told me someone had come forward. I was feeling pretty bad at the time. I had no energy, I couldn't socialise with any of my friends and I was on dialysis.

"I'm so lucky. It's a pretty cool early Christmas present."

There were 96 kidney transplants in New Zealand last year, 58 using organs from live donors.

But Joseph is among a much smaller number to receive an organ from a living stranger rather than a family member or friend.

Ian Dittmer, kidney specialist and medical director for the Kidney Allocation Scheme, said the 17-year-old was only the third recipient of an anonymous donation in Auckland.

"They have had a few more in Christchurch and Wellington, but it is exceedingly rare ... He is a lucky boy."

Diagnosed with a "savage" virus aged 8, Joseph's health quickly deteriorated when an infection spread through his bloodstream and affected his kidneys.

Last year he started dialysis, which meant being hooked to a machine that cleaned his blood for 10 hours a day.

The "exhausting" process meant he was forced to drop out of school and he grew apart from his friends.

Now things are looking up. Joseph has almost recovered from his October operation, has started a mechanic's course in Gisborne and hopes to travel next year.

"I feel normal and there's nothing wrong with me. I feel like me again."

Joseph's mother and other family members were waiting to be tested for a possible match when news of the donor came through. "There were two of us in the renal ward waiting for donors but I was just lucky I was a closer match."

Joseph's mother, Connie Stevens, said she could not be more grateful to the donor who saved her son's life.

"For one to give a part of him or herself to save or even improve the quality of another person's life, especially a stranger, is a truly amazing thing.

"It is the most unselfish act anyone can do."

About 600 people are waiting for transplants and 2000 are on dialysis in New Zealand, but the numbers change daily. Kidney Health New Zealand education manager, Carmel Gregan-Ford, said cases like Joseph's were fantastic because there were so few donors.

"We used to tell people they would have to wait for between 18 months and three years for a kidney transplant, but now many people are waiting for up to five years."

Joseph, who is planning to register as an organ donor, said the only other present he wanted was the chance to thank the person who saved his life.

"I'll probably never know who it is but I want them to know they've done a wonderful thing.

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

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

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

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

"A New Chance At Life": A Look at Organ Donation in Germany

DW-WORLD.DE

Organ failure often means death, especially when there is a shortage of organ donors. In Germany, over 4,000 transplants occur each year, but there are still too few organ donors when compared to those in need.

“When the call comes, you're just beside yourself,” said Hermann Meters, a recent recipient of a new kidney. “You're so happy at that moment, you become absolutely scatterbrained.”

To help even the balance -- and increase the chances of survival for many -- the European Commission recently set forth two new proposals for making organ donations and transplants easier.

One of the most important aspects laid out in these proposals is the introduction of transplantation coordinators for all large hospitals. It's a move that's been quite successful in several EU countries, including Spain. And it's one that Germany will soon make, too.


“There are far too few organ donors in Germany,” said Wolfgang Arns, Head of the Transplantation Station at Cologne's Merheim Hospital.

“Patients sometimes have to wait five, six, seven years and while they wait, they become sicker and sicker. Unfortunately that means watching as a patient's health slips away, making them no longer ideal recipients of a transplant. They simply die while they wait.”

Like winning the lottery

In Germany, three people die every day while waiting on the transplant list. With only 4,000 organs donated each year, making it off the waiting list can seem like winning the lottery.

“When the call comes, you're just beside yourself,” said Hermann Meters, a recent recipient of a new kidney. “You're so happy at that moment, you become absolutely scatterbrained.”

Benjamin Hoffmann, who got a second chance at life recently when he received a new kidney, agreed. For seven-and-a-half years, the 27-year-old had to endure dialysis while waiting for an organ donor to come along.

“Three times a week, for five hours at a time, I'd be stuck with a needle and have to wait as my blood was filtered,” said Hoffmann.

Kidneys, which cleanse the body of impurities while also making sure that the body has enough salt and fluid, are the most frequently transplanted organs in Germany.

Though Hoffmann is quite happy to have finally made if off the waiting list, he prefers not think about where his new organ came from.

“It's better not to think that it may have come from someone who died,” he said. “It's better to simply enjoy it, this beginning of a new life.”

Though one person who is listed as an organ donor can save up to seven lives when he or she dies, kidney donations can likewise come from living donors. For now, Hoffmann only knows that his organ donor was about 50 years old.

Ensuring neutrality

Eurotransplant, an organization based in Leiden, The Netherlands, arranged the transplant with Hoffmann's physician, Arns. They won't reveal more details, as some recipients have problems coming to terms with the idea that they are living with an organ donated by someone who may be dead.

“Working with a distribution center like Eurotransplant ensures that decisions remain neutral,” said Arns. “They have a compulsory schedule that they use to seek out potential recipients.”

Following set criteria -- blood type, urgency of need, the patient's time spent on the waiting list, among other things -- the center chooses who will receive the next transplant. The organ is then shipped to one of the seven European countries which subscribe to the center's services and is delivered to the appropriate hospital.

The bad news: side effects

Once selected, the patients have to undergo a physical to ensure they're healthy enough to handle the new transplant. And afterwards, they need to maintain a strict medication regiment for the rest of their lives.

“These medications, of course, have side effects,” said Arns. “One of which is infection. Another is that it can cause damage in other organs. And the third is, of course, the problem that after taking the medication for a while, the body's natural ‘health police' get triggered and often this creates tumors after a transplant.”

The “health police” is the body's natural immune system. But as artificial kidneys aren't yet available, these side effects are chances that patients have to be willing to take.

And Arns, who has done transplants for over thirty years, is happy about his success.

“It's quite a wonderful feeling,” he said. “It's a real sense of pleasure – most of all when a former patient comes back and you just see how good they feel. It's written all over their face.”

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

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

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

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

Canadian province kicks in for rent of lung transplant patient

People needing out-of-Nova Scotia medical care to get $1,500

Nova Scotian's needing a lung transplant must move to Toronto, over 1,000 miles away, for their life-saving operation. Expenses build up as they remain on the waiting list for donor lungs to become available, sometimes up to a year or more. Congratulations to Louis Brill of the Nova Scotia Lung Association for his compassion and tireless efforts to find some compensation for them.

By JOHN GILLIS Health Reporter
The ChronicalHerald.ca

People who have to spend extended periods outside Nova Scotia to get medical care may now apply for up to $1,500 per month from the province to cover rent.

Marilyn MacKay of Louisdale, Cape Breton, who has been living in the Toronto area since August 2007 awaiting a double lung transplant, will be the first to benefit from the assistance.

Abe Almeda, acting executive director of acute care for the Health Department, said he spoke to Ms. MacKay on Friday and told her the province would send a cheque for her December rent once she provides a receipt and will continue to pay up to $1,500 a month in rent as long as she needs to be away from home.

Ms. MacKay said she and her husband, Ken, felt very encouraged.

"Ken and I were extremely pleased this morning when we heard the news," she said from her niece’s home in Oakville, Ont.

In the fall, Mr. MacKay said the family had spent about $35,000 to keep his wife in Ontario. Despite assistance from the Lung Association of Nova Scotia and others, Mrs. MacKay was considering coming home and giving up her spot on the transplant list because the family was running out of money.

The assistance program is based on a proposal made by the Lung Association to the Health Department earlier this month. Anyone who has had to spend three months or more outside the province to get an insured health service may apply for the funding.

Lung association president Louis Brill, who travelled to Toronto earlier in the year to meet with Ms. MacKay and others in a similar position, said he was pleased Nova Scotia was going to help people facing big costs to get care they can’t get at home.

"We are thrilled (Mr.) d’Entremont has delivered on our proposal," he said in a news release. "We sought assistance for those in need and the government has answered the call."

Mr. Almeda said he believed there were about 10 Nova Scotians awaiting lung transplants in the Toronto area. But he said the help will be available to anyone who had to spend more than three months outside Nova Scotia for care, such as children who need bone marrow transplants.

The assistance will not be retroactive.

In order to provide immediate funding, the program has been created under a "ministerial exception." That means the minister has made the funds available before the creation of a formal policy and cabinet approval.

Mr. Almeda said department staff will meet in January to look at what assistance is offered by other provinces and whether Nova Scotia should help patients with costs other than rent.

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

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

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

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

Breathing life into injured lungs: world-first technique will expand lung donor organ pool

click here for video of breathing lung
click here for enhanced view of an ex vivo lung

"After the donor lungs are removed from a deceased donor and taken to the hospital, they are carefully transferred to a protective, transparent bubble-like chamber that the Toronto team developed in collaboration with Vitrolife, a company specializing in developing lung preservation solutions.

"To avoid injuring the lungs, a series of precise steps are followed when connecting them to a circuit composed of a pump, ventilator and filters through which flow oxygen, nutrients and a special solution The temperature is incrementally increased until it reaches 37 degrees Celsius over about 30 minutes, and ventilation of the lungs is begun during that time."

I was honored to participate in the news conference in Toronto announcing this medical breakthrough that will ultimately save many more lives by getting more patients off the waiting lists and giving them the 'Gift of Life'.

Congratulations to the surgeon who saved my life with a single lung transplant, Dr. Shaf Keshavjee and his Lung Transplant Team for this achievement that will have a global impact. Merv.

December 19, 2008
TORONTO — University Health Network

For the first time in the world, transplant surgeons at Toronto General Hospital, University Health Network used a new technique to repair an injured donor lung that was unsuitable for transplant, and then successfully transplanted it into a patient.

The use of this technique could significantly expand the lung donor organ pool and improve outcomes after transplantation.

In their ground-breaking research, a team of lung transplant surgeons led by Dr. Shaf Keshavjee in the Lung Transplant Program at Toronto General Hospital (TGH) developed an “ex vivo” or outside the body technique capable of continuously perfusing or pumping a bloodless solution containing oxygen, proteins and nutrients into injured donor lungs.

This technique, the Toronto XVIVO Lung Perfusion System, allows the surgeons the opportunity to assess and treat injured donor lungs, while they are outside the body, to make them suitable for transplantation.

Unlike current cooling lung preservation techniques which inhibit cell metabolism and the possibility of any active repair processes prior to transplantation, the Toronto technique maintains donor lungs at a normal body temperature of 37 degrees Celsius, allowing for future organ repair and gene and cell therapy strategies to be used on them.

Although lung perfusion systems have been used in Sweden and England, these systems were blood-based, short-term assessment strategies which were not capable of long-term maintenance or techniques to repair or recondition the lungs.

The Toronto System was used on donor lungs for Andy Dykstra, 56, who received his transplant on December 5, 2008. He had been waiting for a transplant since July 30, 2008, and was told of the clinical trial testing the new system on December 4, 2008.

Recalling his difficulty breathing when walking to the front door in his home, Andy said that he waited only two seconds before deciding to be the first patient to receive the reconditioned lungs, which would not have been suitable for transplant without undergoing perfusion by the Toronto System.

“When I was given this chance, the hair on my arms stood up, I was so excited. I knew it was right. I just had to go for it,” he said, with his wife Chris standing by his side and nodding for emphasis.

Andy is part of an ongoing clinical trial which uses the novel Toronto strategy to identify donor lungs which do not meet current transplant criteria, repair them, and then transplant them into patients. To date, four patients in total have received lungs treated using this technique, and all have done well.

But Andy was the first patient who received lungs which did not meet standard transplant criteria and which could not have been used if they had not been repaired first by the Toronto System. (The three others received donor lungs which met transplant criteria and which were further improved by the Toronto System.)

All TGH patients waiting for a lung transplant are eligible to be part of this clinical trial, and the lung transplant team will assess all those who are interested.

“We are extremely pleased that Andy is doing so well,” said Dr. Keshavjee who is Director of the Lung Transplant Program at TGH, Senior Scientist, The McEwen Centre for Regenerative Medicine, Director, Latner Thoracic Research Laboratories, and Professor and Chair, Division of Thoracic Surgery, University of Toronto, adding that Andy was able to breathe without any mechanical assistance just four days after the transplant and was discharged from hospital 12 days after the procedure.

“This achievement was the result of years of research and pre-clinical planning by a large team of researchers, surgeons, physicians, nurses and other specialists. It means that 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.”

He explained that currently only about 15%-20% of donor lungs are acceptable for transplantation since lungs are susceptible to injuries during the brain-death process or from intensive care unit-related lung complications. These numbers can easily be doubled with this technique to treat and improve donor lungs.

Dr. Marcelo Cypel, a transplant surgical fellow at TGH, echoed Dr. Keshavjee’s sentiments. “This new technique heralds the beginning of a new era in transplantation since it has allowed us to progress from preserving donor lungs to actually being able to repair some of the injury before transplantation. And we have done this using a unique strategy on donor lungs outside the body.”

After the donor lungs are removed from a deceased donor and taken to the hospital, they are carefully transferred to a protective, transparent bubble-like chamber that the Toronto team developed in collaboration with Vitrolife, a company specializing in developing lung preservation solutions.

To avoid injuring the lungs, a series of precise steps are followed when connecting them to a circuit composed of a pump, ventilator and filters through which flow oxygen, nutrients and a special solution The temperature is incrementally increased until it reaches 37 degrees Celsius over about 30 minutes, and ventilation of the lungs is begun during that time.

Lung function is evaluated regularly on key indicators, such as how easily the lungs can exchange oxygen, airway pressure and lung compliance.

Previously published research by Drs. Keshavjee and Cypel on this system (December 2008 issue of the Journal of Heart and Lung Transplantation) has shown that lungs can be safely kept on this circuit for 12 hours in order to assess, maintain and treat them before successfully transplanting them.

Currently, about 80 patients are waiting for either a lung or heart-lung transplant in Ontario. About 20% of those on the wait list will die before they receive a lung transplant.

In Canada, the number of people waiting for a lung transplant has doubled in the past 10 years, with 252 Canadians waiting to receive a lung transplant in 2006, compared to 119 in 1997. Two hundred and ninety-nine (299) Canadians died while waiting for a lung transplant between 1997 and 2006.

The clinical trial is funded by Vitrolife Inc. and is approved by the Research Ethics Board of University Health Network.

A Canadian Institute for Health Information report this week showed that 299 people died while waiting for a lung transplant between 1997 and 2006.

However, the number of lung transplants increased to 171 in 2006 from 93 in 1997, while the three-year survival rate has improved to 80 per cent in 2003 from 60 per cent in 1997, CIHI said.

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

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

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

Your generosity can save up to eight lives 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

Woman gets near-total face transplant in Cleveland

By MARILYNN MARCHIONE Associated Press

CLEVELAND (AP) — A woman who had suffered severe facial trauma got essentially a whole new face in a first-of-its-kind operation at the Cleveland Clinic, hospital officials said Wednesday.

Only the woman's upper eyelids, forehead, lower lip and chin were left — the other 80 percent of her face was replaced with one donated from a cadaver.

The patient's name and age were not released. It was the nation's first face transplant and the fourth worldwide.

The transplant was done within the past two weeks.

"The surgery took 22 hours. The preparation to the surgery took over 20 years," said the lead surgeon, Dr. Maria Siemionow.

"This patient exhausted all conventional means of reconstruction, and is the right patient," she said at a news conference.

So many disfigured patients are stuck "in their houses who are hiding from society," afraid to go out, she said.

"Our patient was called names and was humiliated," she said. "You need a face to face the world."

The face was donated by a family that asked specifically to approve the gift and was not done under general organ donation consent rules, said officials of LifeBanc, the Northeast Ohio organ procurement group that arranged the transplant.

On the Net:
Cleveland Clinic: http://www.clevelandclinic.org/face

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

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

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

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

Disneyland dream for little Adam

kent.co.uk/broadstairs

A BROADSTAIRS boy whose life was saved by a liver transplant when he was just two years old has been given a Christmas trip to Disneyland.

Adam Wall, now 14, was born with a rare condition akin to liver disease which meant he did not grow.

Mum Julie said: "He didn’t put on weight or do anything like other babies, so we put him on the list for a transplant at Kings College Hospital.

"We did it to improve his quality of life, but were told afterwards that his liver probably wouldn’t have lasted much more than six months after the operation. So he would have gone down hill pretty quickly if the operation hadn’t been carried out.

"After that we couldn’t believe the difference in him, it gave him a completely new lease of life and, apart from the fact that he gets rundown towards the end of term and is small for his age, he is just like every other child."

Adam, a student at Charles Dickens school, life was drastically improved by the transplant, so much so that Adam, now competes in swimming and badminton at the transplant games, where kids and adults who have undergone transplants compete in a number of different sports.

Swimming star Adam caught the eye of the event’s organiser Transplant Sport UK, who whisked him and nine other kids and their families off for a Christmas trip to Disneyland last week.

His mum, who went on the trip along with Adam’s sister Sophie, said: "We were so surprised when we heard we were going, and it was a lovely trip. It was a cold weekend, and the lake at the park even froze, but that didn’t stop our enthusiasm.

"He loved the Buzz Lightyear rides and Autotopia, where you get to drive round a race track, but also he made some really good friends with the other lads that went. It was lovely to see."

The trip was a success for everyone but dad Harry, who had to stay at home because he could not get time off from his job as a cab driver.

Trip organiser Carol Olley said: "These children have undergone surgery due to serious life-threatening conditions and face ongoing treatment, making this very special trip a valuable opportunity to just enjoy being kids and have fun.

"Brothers and sisters are very often the forgotten children, which is why it so important that they are able to come and join in the fun and for parents to celebrate their children’s renewed health as a family.

"Having a child with a long-term illness can put both an emotional and financial strain on families.

"Disneyland is a magical place and we hope to allow these children and their families to forget the world of operations and hospitals for a few days and enjoy life."

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

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

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

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

A teen girl's broken heart

Her life, dreams will fade without a heart & lung transplant

Adriana, 14, laughs as her sister Mariana, 2, tells her to be quiet while her mother Mirna and other sister Jessica, 10, stand behind her at the family’s home in La Victoria on Dec. 2. Photo: Nathan Lambrecht

By Sara Perkins The Monitor McAllen,TX,USA

LA VICTORIA - Adriana Garcia will not live to see 20 without a significant amount of money her family does not have.

She will never become the lawyer she wants to be, nor will her cheeks fill out to make the pretty, serious teenager look even more like her pretty, round-faced mother.

Instead, the 14-year-old with bright, appraising eyes and a broken heart will deteriorate, sleeping more and rising less, requiring more canned oxygen. She will waste away and she will die.

ADRIANA

The Garcias - Adriana, her sisters, Jessica and Mariana, her mother, Mirna, and father, Jorge - moved to a rented trailer east of Rio Grande City two years ago from Ciudad Mier, Tamps. They left behind a stable life for poverty, with a slim hope that in the United States their daughter could get a new heart and lungs, and with them, a future.

In Mexico, doctors told them, there was simply no hope she would receive an organ transplant to replace the damaged heart with which she was born.

It's a Friday afternoon and at the table in the family's tidy kitchen, Adriana is struggling through a series of pre-algebra problems under the watchful eye of teacher Paul Cho. Her mother struggles to keep Mariana, 2, quiet while her sister studies.

When Cho asks her a question she cannot answer easily or punch into her calculator, Adriana's hand strays to the raised scar on her chest.

In January, doctors at Driscoll Children's Hospital operated on her heart. She has another scar at the base of her rib cage, evidence of a stopgap attempt to keep the organ working for a while longer, an emergency measure that sent her through three different hospitals and produced a stack of still-unpaid bills.

Only two cardiologists would agree to the surgery, which repaired the hole in her heart but left it weaker than before, Mirna said. The rest thought Adriana would not be able to survive the trauma.

Cho and another teacher see Adriana in her tiny home because she cannot easily attend school. The Rio Grande City school district's special education department nominated the Garcias for the "12 Days of Christmas" project.

The series, sponsored by the United Way and The Monitor, highlights local families in need and asks Rio Grande Valley residents to make their holidays a little better.

Adriana takes 10 pills every day, and she tires more and more easily since the surgery earlier this year. Teachers at Rio Grande City High School scheduled her classes so they were close together, so she wouldn't have to walk too far between them, but three days into the school year, she broke her foot. Hobbling on crutches made the school day all the more exhausting and eventually she was told to stay home.

"This young lady wants to go back to school, incredible as it may sound," said Silvestre Reyna Jr., a teacher for homebound students, who visits the Garcia home twice a week to bring assignments and provide a few hours of instruction. "The first meeting I had with her, she said, ‘As soon as this cast is off, I'm back in school.'"

NUMBERS

Compared to the wrenching choices hospital administrators have to make every day, the choice not to refer Adriana to a transplant center relatively easy. The numbers came nowhere close to adding up.

She's ineligible for Medicaid and wouldn't be able to get private insurance even if her family could afford it - a congenital heart defect is a pre-existing condition. Without either avenue, she cannot pay for the medical testing required to certify her for the transplant waiting list, much less the expensive surgery or a lifetime of medications to keep her body from rejecting the new organs.

Cathy Camp, a registered nurse at Driscoll's cardiology center, could not speak specifically about the Garcias because of medical privacy laws, but said in a similar situation the hospital would call transplant-ready hospitals to see if they had any programs to pay for indigent patients.

"I believe there really wasn't anything," she said.

Without that referral, Adriana is not even on a waiting list for the organs she needs.

According to the Organ Procurement and Transplantation network, nine other people in Texas are waiting for a heart-lung transplant. There are 84 others across the country - as well as 2,705 people waiting for just hearts, and 2,019 needing only new lungs.

HOPE

Jorge, Adriana's lanky father, is a mechanic who gets work through friends.

Her mother, Mirna, spends her days caring for Adriana and for little Mariana while 10-year-old Jessica is in school. Their house is neat as a pin and decorated for Christmas, but Mirna has to make careful choices about what to light for the season: Even much-needed heaters or in-window air conditioners routinely blow the fuses on the house's inadequate wiring.

Mirna's aunt, Silvia Martinez, lives nearby and often comes to visit. She helped place an advertisement in Starr County's weekly newspaper asking for donations to aid in Adriana's care. She also helps to organize the bingo games in the neighborhood that raise money to buy medication.

A bill in Mirna's growing stack, from Dr. Juan Aguilera's office, shows that some giving is indirect: It asks the Garcias to pay $195; $1,140 in additional costs are listed under "insurance pending," despite the family's lack thereof.

Starr County Memorial Hospital hasn't been as forgiving. A collection agency is squeezing Mirna and Jorge for $1,030.75: the cost of several ambulance rides.

It would be easy to give up hope, were the alternative not so unthinkable. Their lovely, wide-eyed daughter deserves to grow up.

"We're waiting," Mirna said in Spanish, her hand resting on Adriana's squared shoulder. "We have faith in God that somebody will be able to help us."

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

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

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

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

Organ donation advocate and volunteer fondly remembered

BY Megan Doherty The Canberra Times

Andrew Bird was well known in Canberra for his strong advocacy of organ donation and his volunteer work with the YMCA.

But his cheeky sense of humor and spirit of life were what most people remembered about him.

Mr Bird, who would have turned 41 on December 28, died last month, just six months after receiving a double lung transplant at St Vincent's Hospital in Sydney.

The former bus driver suffered from coronary obstructive pulmonary disease, which he developed in the past three years, and which was partly related to emphysema.

His parents, Noreen and Des Bird, of Farrer, cared for their son in his final years. Family and friends gathered at Andrew's funeral in Canberra earlier this month after his death on November 27.

"I was there when he took his first breath and there when he took his last," Mrs Bird said.

Andrew, who volunteered with the YMCA, at its community gym at Chifley among other places, was "a great jokester" who tried never to let his illness affect his positive outlook.

"He always had a job, he always looked on the bright side of life, always had girlfriends, and in the last three years of his life he became very proactive in promoting organ donor awareness," she said.

He had been a moderate smoker and gave up as soon as his condition became known. He was on an oxygen tank 24 hours a day until his transplant.

"I don't advocate anyone putting a cigarette in their mouth and Andrew should have been one who never did," Mrs Bird said.

When he received his double lung transplant in May, Mr Bird was able to breathe on his own. He could play his beloved lawn bowls at Yamba Sports Club unencumbered by his oxygen tank. He believed he had a second chance at life.

"He was really good in the first little while. He was playing sport. He tried to ride a bike and put on weight and was looking well," Mrs Bird said.

"Then bells started to ring that things weren't quite right. His transplant team was really devastated because an extremely low percentage of people have complications in their first 12 months of receiving an organ and it happened to him. They worked so hard for him. And he fought so hard."

Mr Bird couldn't donate his own organs because of the medical drugs he had to take but he was always grateful to his donor.

Mr Bird Sr rang Ian "Macca" McNamara on ABC Radio's Australia All Over yesterday to let him know about Andrew's death and to thank the St Vincent's transplant team. Andrew had been a regular caller to Macca.

"He had a bloody go," Mr Bird said.

Among those to offer the Birds their condolences was Chief Minister Jon Stanhope, who wrote a letter of sympathy on behalf of his Government and "the people of Canberra".

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

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

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

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

Brussels wants organ-donation system in bid to cut deaths

By Ivan Camilleri, Brussels - Times of Malta

In a bid to reduce the bureaucracy and suffering of those waiting for transplant operations, the European Commission has unveiled plans to push member states to work together on organ donation and transplants.

There is still lack of cooperation among health authorities in the EU27 over organ exchanging and donation - the majority are still tackling this issue individually, often at a high cost.

According to the Commission, 12 persons a day are dying in Europe as they wait for organ transplants. The waiting list has now reached 56,000.

Adopting a new directive on Organ Quality and Safety Measures, together with a 10-point action plan, the Commission said it wanted member states to strengthen organ donation and transplantation systems.

"These measures are all about saving lives," Health Commissioner Androulla Vassiliou said at a news conference.

The draft proposals, which still need the approval of member states and the European Parliament, focus on improved cooperation, partly through procedures and through the sharing of knowledge and expertise.

Member states would also be obliged to create an authority to run checks on the quality of organs and on health standards.

Under the six-year action plan, spanning from 2009 to 2015, an EU-wide system will be created to trace the origins of organs, and another system to report serious reactions to a transplant.

The Commission is hoping the success of a similar system in Scandinavia, where organs are pooled, may also be introduced across the EU.

The EU executive said the need for international cooperation in this area was made more acute by the wide discrepancy in the number of donors. Donation rates varied from 34.6 per million people in Spain to 13.8 per million in the UK, six per million in Greece and just 0.5 per million in Romania.

According to the results of a Eurobarometer survey published last May, 15 per cent of Maltese said they had a donor card. However, 75 per cent agreed that they would consent to donate their organs after their death if asked.

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

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

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

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

Think about signing those organ donor cards

By Valerie G. Barnes-Connell The La Ronge Northerner

In the season we traditionally think about gift giving, there’s varied ways of gift giving including thinking about signing your organ donor card.

Elaine Greschner (photo) knows about the importance of organ donors first hand.

Diagnosed with Cystic Fibrosis at two years, Greschner’s illness led eventually to the need for two double-lung transplants. Cystic Fibrosis attacks the lungs and the digestive system, which meant she has always had to take enzymes to assist with food digestion, Greschner said.

“My Mom had to do what we call thumping; I think it’s called chest percussions. It’s thumping back and forth to clear mucus because that’s what happens over the years; it hardens and causes scar tissue,” she said, adding she grew up in Beauval and travelled to Saskatoon annually for medical attention. Greschner chose a career in education teaching in the north in places such as La Loche before coming to La Ronge.

“I was able to teach until I was 34 … the day I quit teaching is the day I went on oxygen and a year later I was put on the transplant list,” she said, adding that was 1997 and she waited one-and-a-half years for a transplant.

With a choice of Edmonton or Winnipeg, Greschner said, she checked out all the ins and outs and chose Winnipeg. “They have an impressive team there, excellent doctors and nurses.”

In March 1999, Greschner underwent a double-lung transplant.

“Talk about a huge difference from how I felt before that … I felt like I had a new life so fast, so suddenly … I was on oxygen – pretty much felt like a 90-year-old lady I had no energy. It was even hard to eat.

The transplant lasted about nine months, in which time Greschner went kayaking off Vancouver Island and kept up an active lifestyle.

Rejection with transplants is always a concern, Greschner, who said, during that time she also contacted Cytomegalovirus (CMV), which is a common virus most people get at sometime in their lives.

“I think it was a combination of rejection and this CMV virus that caused the deterioration. Then I was lucky enough to get put on a waiting list again at the end of 1999. On New Years Eve 2001 we got the call (about) another set of lungs,” she said, adding she and her husband, Toby, were in La Ronge when the call came in.

With one-and-a-half hours to get ready, Greschner said, bags had to be packed and people phoned to let them know what was happening. For the first transplant Greschner spent three weeks in hospital, but that was reduced to two weeks for the second one because the “third week is training on medications and stuff,” but they had to stay in Winnipeg for another month.

“We had to go to the hospital every second day for adjustments and monitoring of medications. I was feeling very, very well so we had lot of time on the alternate days to explore and get our walks in because that’s the best thing for the new lungs – exercise.” With both surgeries the change in energy came quickly, Greschner said, but adding at first she woke up attached to “dozens and dozens of machines with tubes hooked in everywhere. When you see that it makes you so appreciative of what the human body can do on its own.”

Prior to both surgeries Greschner was on 100 per cent oxygen; she carried a portable tank with her wherever she went.

In the time in between the transplants particularly, Greschner tried to keep as active as possible, walking and kayaking whenever possible.

In fact, a call with transplant opportunity came while Greschner was on a kayaking trip to Vancouver Island and she was unable to get to Winnipeg.

“Sometimes fate happens for a reason … it turned out good, because I was told with that one I would have had to make a lot of compromised because it wasn’t a perfect match so it turned out good. But also it could have been my last chance at a set of lungs event thought it wouldn’t have been perfect. It was quite emotional. It worked out for the best.”

While the first transplant was not a perfect match, the second one turned out to be an “almost perfect match,” she said. “Now I’ve had the surgeries CF is no longer in my lungs, but I still have it in my digestion,” she said.

Although she has not been able to return to teaching, Greschner said, she has been able to live a “sort of normal” life; she remains busy walking daily and volunteering in the community.

But the challenges were not over for Greschner. In May she found a lump under her arm.

A side effect of the transplant is the risk of different forms of cancer, particularly those connected to the skin or lymphatic system, Greschner said.

“I will be forever grateful or I wouldn’t have known it was there otherwise … I was the first one in Saskatoon Health District to get Post Lung Transplant Lymphoma.”

Between July and Nov. 22, Greschner completed a round of Chemotherapy.

“I had a checkup half way through and the doctor said the tumors were responding; I am scheduled for annual testing but I don’t know when. I feel like I’m okay as long as there’s hope. I don’t really worry about this cancer,” Greschner said.

Greschner said it’s important people consider signing the organ donor card that comes with their driver’s licence, but stresses it’s important to discuss any decision with family members first.

Seven people benefited from the same donor she did, Greschner said.

“I know I signed my organ donor card … I obviously think it’s important and a worthwhile thing. So many people’s lives are saved. It’s a hard thing to talk about but if you just think about the lives that are saved,” she said speaking about the importance of organ donors. Greschner also expressed appreciation for the support and prayers of so many people.

And although she doesn’t know who the donors were that gave her a new lease on life, twice, of the last one she said, “(The donor) must have been an athlete.”

And before leaving hospital people who have received transplants have an opportunity to write to the family of the donor expressing their appreciation, Greschner said.

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

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

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

Your generosity can save up to eight lives 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

Transplant hopes dashed by 'false alarms'

When I read that Brian Maloney had eleven false alarms for his lung transplant I was incredulous. I heard of one transplant patient having four calls to rush to the hospital for their transplant only to find the donor lungs were not suitable, but eleven false alarms is probably a world record. I have great empathy for Brian knowing how excited he must have been with each call only to have his hopes dashed. Hopefully the new Ex-vivo procedure described below will make lungs viable that would have been previously unsuitable.



By Amanda Crook Manchester Evening News

BRIAN Maloney desperately needs a lung transplant. But on each of the eleven times he's been summoned to hospital to prepare for the operation, he has been sent home without surgery.

Brian, 60, has been on the waiting list for a replacement lung for 15 months and every few weeks since then he has been called into hospital as doctors prepare and test donor organs.

But each time the lungs have been deemed unusable or they have both been given to someone waiting for a double transplant.

Doctors at Wythenshawe Hospital say they have never known a patient be so unlucky so many times.

Brian, of Bee Hive Green, Westhoughton, Bolton, needs oxygen to help him breathe 24 hours a day.

He said: "I desperately need a transplant now. Every time they call me in I have to prepare myself for the operation, it is impossible not to get your hopes up when it is the only option open to you.

"Mostly I've been called in at night and then have to wait - too excited and nervous to sleep - before being sent home in the morning.

"I am really pleased to have been called in for the operation because I know lots of people on the list die without ever being called in but it is tough," said Brian, who has decided to talk about his experiences to encourage more people to become donors. Mr Maloney's partner of six years, Hilary Grimshaw, said: "It is so traumatic preparing yourself for such a big operation and then going home without having it."

Surgeon Nizar Yonan said Mr Maloney's case illustrates the need for more people to donate relatives' organs.

He said: "We call in two or three people each time an organ becomes available because we want to ensure we use all suitable organs.

"We do always warn people we may not be able to carry out the procedure and often people will be called in a few times before having an operation but this is a very unusual case."

Mr Maloney, who suffers from the deadly condition pulmonary fibrosis, has signed up for a pioneering procedure which was tested at Wythenshawe last month.

Doctors now have the technology to use lungs from people who have not been kept alive by machines. Central to this is a new technique to test lungs 'ex-vivo' - outside the body - to check they are suitable for transplantation.

To find out more about organ donation and register as a donor call: 0845 60 60 400 or go to UK Transplant.

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

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

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

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