Thursday, April 30, 2009

Double-lung Transplants Work Better Than Single For Long-term Survival

ScienceDaily (Apr. 28, 2009) — Having both lungs replaced instead of just one is the single most important feature determining who lives longest after having a lung transplant, more than doubling an organ recipient's chances of extending their life by over a decade, a study by a team of transplant surgeons at Johns Hopkins shows.

The finding is potentially controversial, researchers say, because there is already a shortage of organ donors, and more widespread use of bilateral lung transplants could nearly halve the potential number of beneficiaries. Though more than 1,400 lung transplants occurred in the United States in 2008, another 2,000 Americans remain on lung waiting lists, while 80 more are waiting for both a heart and lung.

"Our results suggest that double-lung transplants have a long-term advantage, and surgeons should consider bilateral lung transplants whenever possible," says study senior investigator and transplant surgeon Ashish Shah, M.D. But, he notes, "Not all lung recipients necessarily need a bilateral transplant. Many people with chronic obstructive pulmonary disease, including emphysema and different kinds of pulmonary fibrosis, can survive with just one lung being replaced, while other lung diseases, such as cystic fibrosis, usually require transplantation of both lungs. But double-lung transplants clearly perform better over time.

"What we're really after here is to find as many factors as possible that support long-term survival, so that we maximize the gains in average lifespan for all our patients," says Shah. Among the team's other key findings, presented April 22 in Paris at the 29th annual meeting of the International Society for Heart & Lung Transplantation, are that a perfect or near perfect match between the donor's immune-activating protein antigens with a recipient's and having a college education increases chances for long-term survival by 38 percent and 40 percent, respectively.

The study, believed to be the most widespread search ever conducted for factors that may extend the life of lung transplant recipients, are among the first to emerge from an analysis of 836 so-called long-term survivors of lung transplants, men and women who have lived at least a decade after transplant surgery between 1987 and 1997, an extended period for which detailed medical histories are now available.


Seventeen percent of all lung transplant recipients survive this long or longer with their new lungs, a figure that Shah, an associate professor at the Johns Hopkins University School of Medicine and its Heart and Vascular Institute, says is "pretty good, but not good enough" and the result of advances made in the last two decades with immune-suppressing drugs that prevent the recipient's body from rejecting the transplant.

"Until now, we knew how best to ensure that transplant recipients survive for the first few months after surgery, avoiding infection of the transplanted lung, and then staying healthy for the next two years to five years. But we never really knew what factors distinguished the long-term survivors from those who succumbed earlier, to either organ rejection or death," says Shah, who has performed over 100 lung transplants in the past decade.

Lead study investigator Eric Weiss, M.D., says that a patient's education, though key, is more likely a cover or surrogate, masking some other factor or combination of factors that are accounting for the increased longevity. Possible explanations, he says, are that better educated people may have better health insurance and access to care than those with less formal schooling, or that people with degrees are better at keeping their physician appointments on schedule, taking their medications as prescribed and sooner alerting their physicians to problems.

"Our results are a reminder to both patients and physicians that we still have a lot to learn about how best to prolong lung transplant survival, and that we need to be constantly evaluating our procedures to determine what is in the patient's best, long-term interests," says Weiss, a postdoctoral research fellow in cardiac surgery at Hopkins.

Indeed, he points out that a key advantage in double-lung transplants over single-lung transplants is that residual disease is not left behind in the spared lung. Moreover, when both lungs are replaced, the new lungs, which must breathe together as a pair, are already adapted to each other.

The vast majority of the lung transplants performed by Shah's team at The Johns Hopkins Hospital involve the fully paired organs, including 15 of 17 in 2008, 20 of 22 in 2007 and 20 of 23 in 2006.

In the latest study, long-term survival for lung recipients was also upped when they had "highly compatible" immune systems with their donor, with at least five of six so-called human leukocyte antigens (or HLA) the same as the donors. HLA antigens are proteins that sit on the cell surface and act like a secret passcode among the body's cells, triggering the body's immune system to reject anything that's not recognizable as its own. The better the match, Weiss says, the better are chances for immunosuppressive drugs to work over the long term at preventing organ rejection.

The study analysis involved a detailed review of the patient records for all single-lung and double-lung transplants performed in the United States and Canada from 1987 to 1997. The data came from the United Network for Organ Sharing (UNOS), a national network that allocates donated organs across the country.

Weiss says the team next plans to evaluate what aspects of education make the difference in long-term survival, with the goal of identifying independent factors that can influence better adherence to drug treatment plans or that could potentially be altered in people to extend the amount of time they can potentially live with their new organ.

Funding for the study was supplied in part by the U.S. Health Resources and Services Administration, the U.S. National Institutes of Health, and the Joyce Koons Family Fund for Cardiac Surgery Research.

In addition to Shah and Weiss, other Johns Hopkins researchers involved in this study were Jeremiah G. Allen, M.D.; Christian Merlo, M.D., M.P.H.; and John Conte, M.D.

“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

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In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Wednesday, April 29, 2009

Lung transplant contraindicated for patients 70 years or older

Transplant Living News

NEW YORK (Reuters Health) - A retrospective review of United Network for Organ Sharing (UNOS) data has led reviewers to conclude that lung transplantation may be used "with caution" in patients older than age 60 but "should not be used for patients older than age 70."

"From current guidelines, there exists no definitive recommendation regarding the maximum age that is safe for lung transplantation," Dr. Eric S. Weiss from The Johns Hopkins Hospital, Baltimore, Maryland, who led the effort, told Reuters Health.

He and colleagues analyzed the impact of advanced age on short- and intermediate-term outcomes for 8,363 adults who had a lung transplant between 1999 and 2006. Patients were stratified by age into four quartiles: (Q1) 18 to 45 years (n=2192); (Q2) 46 to 55 (n=2160); (Q3) 56 to 60 years (2000); and (Q4) 61 years to 79 years (2011).

"The findings of this study show that patients age 60 to 69 can be transplanted safely with acceptable short and long term results," Dr. Weiss told Reuters Health.

Patients in all four age quartiles had similar 30-day and 90-day mortality rates, the investigators found. Thirty-day mortality rates for Q1, Q2, Q3, and Q4 were 5.5%, 5.3%, 5.4% and 4.6%, respectively, while 90-day morality rates were 9.5%, 9.5%, 8.9% and 9.3%, respectively.

"Importantly," Dr. Weiss said, "although I think some clinicians are reticent to transplant older patients due to fear of operative and short-term mortality, our study shows that short term survival is no different in older patients relative to young patients."

At 1-year, patients in Q4 (age 61-79) had mortality rates of 21.4%. One-year mortality rates for the other groups were 17.3%, 17.2% and 18.7% in Q1, Q2 and Q3, respectively.

According to Dr. Weiss, patients age 70 and older had "exceedingly high mortality rates." Of the 57 patients identified as 70 or older, 34% of the patients died during the study period. These patients had a 30-day mortality rate of 7% and 1-year mortality rate of 42%.

"We did not expect to see such a strikingly high mortality rate for the 57 patients age 70 and older in this study," Dr. Weiss admitted. "I think the findings of this study support transplantation for patients younger than age 70 only," he concluded.

J Am Coll Surg 2009;208:400-409.

“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

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In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Tuesday, April 28, 2009

Racing to contain Swine Flu

Organ transplant recipients are particularly vulnerable to infections such as the swine flu because they are immunosupressed by the anti-rejection drugs they take daily. The following comment posted in the Baltimore Sun gives us some common sense guidelines we can follow to reduce the chances of getting the flu and what actions we should take if we do develop symptoms. I would also add that organ recipients should be very careful about traveling to Mexico at this time; The United States advised Americans against most travel to Mexico and ordered stepped-up border checks in neighboring states. The European Union health commissioner advised Europeans to avoid nonessential travel to Mexico and parts of the United States. On Monday, the Public Health Agency of Canada issued a travel warning advising Canadians to postpone any non-essential travel to Mexico until further notice.

Travel age diseases seem to be the norm--don't go to emergency rooms, doctors' offices and hospitals for trivial reasons if you are generally healthy--waiting rooms are great places to catch infections--those who are tempted to go for aches and pains, hair loss, skin blemishes and so on stay home until this reality passes.

The immunosupressed----smokers, cancer patients, those with AIDS, heart patients, those with COPD and asthma, diabetics, those with organ transplants, those waiting for transplants and those with TB, heavy drinkers, the drug addicted, the very old and the very young are particularly vulnerable.

Wear masks even if you look funny around sick people--carry alcohol rubs to wipe hands often if not wash hands often, stay hydrated, be careful in Gyms-they are great incubators of infection, so also physiotherapy equipments.

Cough and sneeze into tissues and don''t leave these tissues lying around. Keep up your nutrition and your sleep-these are best inoculations against any infection-even if you get it you will survive if you keep your immune system in good shape--not if you have run yourself ragged with junk food, soda, chips, alcohol, partying and 2 hours of sleep each night.

If you have a high fever, are short of breath, have neck rigidity, mental confusion, severe headaches or you cannot keep any food down go to the hospital--flu can cause pneumonia, acute and severe sinusitis, encephalitis, dehydration and even meningeal inflammation--supportive treatment, hydration, oxygenation and antibiotics for secondary bacterial infection are available in hospitals and can save lives.

More than the reporting systems being inadequate, private doctors seeing patients are so busy they may genuinely miss cases as being serious or part of an epidemic unless and until the numbers grow large or healthy people start dying---sporadic severe cases will not have the same urgency as will an ongoing steady flow of cases, an acute overwhelming number of cases or a group of cohorts, like in the case of New York, coming down with the illness together or healthy people not expected to die actually dying from the disease-- reporting is usally the result of a tipping point because the suspicion index is low until things get bad. Something should be out of the ordinary in Medicine to say--this is different-it smells like it could be dangerous. Unfortunately by the time a possible epidemic is nosed out, people are actually dying and the bug is having a spree.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

ISHLT 2009: Azithromycin for Bronchiolitis Obliterans Prophylaxis in Lung Graft Patients Gets Mixed Reviews

From Medscape Medical News

Neil Osterwell

April 24, 2009 (Paris, France) — In the never-ending search for therapies to prevent chronic lung allograft rejection, macrolide antibiotics, such as azithromycin, show promise, but only in about half of patients, report the authors of 2 European studies here at the International Society for Heart and Lung Transplantation 29th Annual Meeting and Scientific Sessions.

The first interim analysis from a randomized, double-blind trial comparing azithromycin and placebo showed that about half of patients with established bronchiolitis obliterans syndrome (BOS) had a response to azithromycin, reported Robin Vos, MD, a fellow in pathophysiology at Katholieke Universiteit and University Hospital Gasthuisberg, in Leuven, Belgium.

In addition, the efficacy of the drug appears to be related to grade of BOS, with close to half of patients with BOS grade 0p responding compared with only about 7% of patients with BOS grades 1 to 3, reported Federica Meloni, PhD, MD, from the Department of Hematological, Pneumological, and Cardiovascular Sciences, Respiratory Disease Section, at the University of Pavia, in Italy.

The results from the Belgian study support evidence of both an inflammatory and a fibroproliferative component to BOS, with the former likely to respond to azithromycin (Zithromax, Pfizer) and the latter unlikely to respond, the Belgian researchers suggested.

"We found an inflammatory phenotype with mainly neutrophils in the airways, and we found a phenotype with a more rapid decline in lung function later on, after transplantation, without cellular inflammation. We could clearly demonstrate that only those patients who have a high neutrophilia, without being infected, will respond to azithromycin, whereas the patients who don't have BAL [bronchoalveolar lavage] evidence of neutrophilia do not respond. So neutrophilia is really the driving force for an effect of azithromycin," said senior author Geert Verleden, MD, professor of immunology at Katholieke Universiteit, in an interview with Medscape Transplantation.

In the study, lung-transplant patients treated from September 2005 through December 2007 were randomized at discharge to receive either placebo or azithromycin 250 mg per day 3 times a week in addition to conventional therapies.

The primary study end points were BOS-free survival and overall survival at 2 and 3 years after lung transplantation. Under the protocol, patients who develop grade 1 or higher BOS are withdrawn from the study, started on open-label azithromycin, and are followed with forced expiratory volume at 1 second (FEV1) and airway inflammation studies.

At the most recent follow-up (2.3 years), 23 of the 83 enrolled patients discontinued because of the development of grade 1 or higher BOS, 5 had died (not from obliterative bronchiolitis), and 7 had dropped out because of adverse gastrointestinal events, suture problems, malignancy, or sepsis; 3 of these patients have since died.

Of the 23 who withdrew from the study as a result of BOS, 1 died and 22 were started on open-label azithromycin. Of this group, 12 were responders to azithromycin and 10 were nonresponders.

The researchers found that patients with airway neutrophilia in BAL at 3 months showed a trend toward the development of BOS (P = .05; correlation coefficient [r], 0.20). Azithromycin responders tended to have an earlier diagnosis of BOS than nonresponders (236.6 vs 322 days, respectively; P = .03), but the responders had a positive correlation with improvement in FEV1 after starting on azithromycin (P = .04; r = 0.6).

In the second study, Dr. Meloni and colleagues looked at the effects of 12 to 30 months of azithromycin therapy on 62 lung-transplant recipients, 43.5% with grade 0p BOS, 34% with grade 1 BOS, 8.1% with grade 2 BOS, and 14.5% with grade 3 BOS. As in the Belgian study, the patients received azithromycin 250 mg 3 times each week.

Patients with at least 12 months of follow-up (53 of the 62 patients) were stratified by change in FEV1 as being either responders (increase of greater than 10% in FEV1), having stable disease (change up or down within 10% of baseline), or nonresponders (decline of greater than 10% in FEV1).

There were a total of 12 responders, 10 of whom had grade 0p BOS, and 2 of whom had grade 1 to 3 BOS. Among patients with stable disease, 10 had grade 0p BOS and 21 had grade 1 to 3 BOS. Of the nonresponders, 2 had grade 0p BOS, and 8 had grade 1 to 3 BOS. The differences among the groups in the distribution of grades, on the basis of the chi-squared test, were statistically significant (P = .0045).

Among 23 patients with nearly 3 years of follow-up, the 7 nonresponders continued to show a decline in graft function, as measured by FEV1. Of patients with stable BOS, only 1 had a decline in function at 30 months, with a significant decline in FEV1 over baseline. Of the 8 responders, 7 showed improvement in FEV1 after starting on azithromycin, but 2 had a decrease in graft function at the last follow-up.

When they looked at peripheral blood cell parameters as possible indicators of efficacy, they found no significant differences, except for a significant decrease in the percentage of neutrophils at 12 months in the responders compared with the non responders, Dr. Meloni said. They also found that azithromycin significantly reduced proinflammatory chemokines, irrespective of treatment response.

The researchers concluded that chronic azithromycin therapy could result in long-term stabilization or improvement in graft function, but that this effect is highly dependent on disease grade, with 43% of patients with grade 0p disease having a response, compared with only 6.6% of those with grade 1 to 3 BOS.

A lung-transplant specialist who was not involved in the studies but who attended the session where they were presented said that the reason azithromycin is effective in some patients but not others needs to be elucidated.

"Are you dealing with 2 different diseases, 2 stages of a single disease, or . . . 2 different diseases coexisting in the same patient, like rheumatoid arthritis and osteoarthritis?" Marshall I Hertz, MD, professor of medicine at the University of Minnesota, in Minneapolis, wondered in an interview with Medscape Transplantation.

"A lot of us are working on biomarker development to get reproducible markers of one or the other phenotype so that you can measure biochemically something that we're not measuring very clinically. What we're doing right now is like treating hypertension by measuring strokes, when patients reach something very far down the road, when you'd really like something like a blood-pressure cuff."

Dr. Vos, Dr. Meloni, and Dr. Hertz have disclosed no relevant financial relationships.

International Society for Heart and Lung Transplantation (ISHLT) 29th Annual Meeting and Scientific Sessions: Abstracts 153 and 155. Presented April 23, 2009.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Monday, April 27, 2009

HIV No Barrier to Liver Transplant

By Michael Smith, North American Correspondent, MedPage Today
Published: April 24, 2009
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco

TORONTO, April 24 -- People with HIV do just as well as others after a liver transplant -- as long as they don't have hepatitis C as well, researchers said in Copenhagen.

In one of the few studies with data on long-term outcomes, those with HIV had one- and five-year survival rates of 86.5% and 74% respectively, according to John O'Grady, M.D., of Kings College Hospital in London.

By comparison, HIV-negative liver transplant patients in the prospective UK Transplant Database had rates of 87.1% and 78%, which were not significantly different, Dr. O'Grady reported at the annual meeting of the European Association for the Study of the Liver.

"In terms of HIV, the clinical guidance is that theses patients do very well, (and) they should be considered for transplant in the normal way," he said. "They don't present any particular different clinical problem than the general liver transplant population."

On the other hand, he said, patients with both HIV and hepatitis C are a significantly greater challenge.

"They need to be counseled that severe recurrence of hepatitis may be a problem after the transplant," he said, adding that he and other specialists are anxiously awaiting new medications.

"We are desperate to get the newer agents, evolving agents, tested in this population at an early stage, because they have clearly an urgent need for drugs to control hepatitis C replication," Dr. O'Grady said.

Dr. O'Grady and his colleagues analyzed outcomes of all patients having a liver transplant in the U.K. from March 1994 through April 2008.

The database includes 33 people with HIV, 847 with hepatitis C, and 5,435 HIV-negative patients. Of the HIV-positive patients, 22 also had hepatitis C.

The researchers compared patients with both HIV and hepatitis C, those with HIV, and those with hepatitis C only.

The analysis found that:

  • Model for End Stage Liver Disease (MELD) scores were comparable between the three groups.

  • Patients with both viruses lived, on average, for 29 months post-transplant, compared with 47.7 months for those with hepatitis C only, a difference that was significant at P=0.04.

  • One- and five-year survival rates were 73% and 53% for those with both diseases, compared with 100% and 100% for those with just HIV, and 87% and 69% for those with just hepatitis C. The differences were significant at P=0.04.

Interestingly, despite the promising one- and five-year survival rates, patients with HIV had a mean post-transplant survival rate of 44 months compared with 57.1 months for HIV-negative patients, a difference that was significant at P=0.0001.

Dr. O'Grady said that difference is probably an artifact of the changing face of HIV -- the analysis included only a few patients transplanted early in the HIV pandemic, who tended to do very poorly.

In a univariate analysis, hepatitis C infection was a significant predictor of death after transplant in HIV-positive patients, with an odds ratio of 10 and a 95% confidence interval from 1.03 to 97.04.

But in a multivariate logistic regression model, the effect of hepatitis C was not independent of other covariates, such as MELD score and recipient and donor ages.

The researchers did not report study support or conflicts.

Primary source: European Association for the Study of Liver
Source reference:
Joshi D, et al "UK liver transplant experience of HIV: Long term outcomes" EASL 2009;

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Saturday, April 25, 2009

The Power of Two: A Twin Triumph Over Cystic Fibrosis

Identical twins Anabel Stenzel (L) and Isabel Stenzel Byrnes pose for a photograph in Redwood City, California in this February 20, 2008 file photo. When the twins were born with cystic fibrosis in 1972, they were not expected to live to adulthood. Three decades -- and three lung transplants later -- they are telling their story in "The Power of Two."  REUTERS/Robert Galbraith/Files

A few weeks ago I had the great pleasure of meeting Ana Stenzel in San Francisco and I was so impressed with what she and her sister Isa have been able to accomplish while living with cystic fibrosis and three lung transplants (Ana had two) that I decided to promote her book when she asked me if I would consider doing so. Ana and her sister Isa's story is one of courage, determination and a will to conquer and succeed in spite of the obstacles that were placed before them all their lives. They have written their life stories in a wonderful book: The Power of Two: A Twin Triumph Over Cystic Fibrosis.

I have many friends with CF and I'm sure that Anabel and Isabel's life story and experiences will be of great help and inspiration to all who suffer from this debilitating affliction. It will also be of interest to everyone who is faced with a bleak outlook for the future because it shows that it is possible to overcome just about anything that life throws at us if we put our minds to it.

Please read reviews of their book at the web site.  (where you will also find much more info about these amazing twin sisters)

 What Readers Are Saying...(taken from the web site)
  • First of all, I recently finished your book, and was incredibly moved, impressed, and inspired. It was one of the few memoirs I've read in my life that made such a deep impression, I am not quite the same person I was. Why? I feel like I learned some new things about love, and how persistent it can be! I am healthy, 46, and have a job I enjoy and husband I love - reading your book sort of woke me up! - JC

  • I read your book & I loved it. I found it very inspirational for me, because I now have realized anything is possible in life even if you do have CF. Nothing can stop you from living an ordinary life. I now have faith that I can overcome this disease and enjoy life. Thank you! This is the best gift ever. --CF teen

  • I want to tell you quickly how incredibly powerful your book is. I finished it last night and still don’t have the words. The book is a gift, a celebration and a beautiful memorial to many. --OD, Santa Fe, NM

  • I have been very hesitant to read any memoirs about CF or similar materials because, quite frankly, I get extremely depressed about the future. However, I also feel like I owe it to my daughter to be prepared for what is to come, not only medically, but also emotionally. Everything that I had heard about your book led me to believe that it would something I could handle reading... I also thoroughly enjoyed reading about all of the things that CF has taught you about what is important in life... Thank you so much for writing your book, and your honesty in doing so. -- Mother of a CF infant, Los Angeles, CA?

  • Kudos on your truly superb book. I'm not quite finished with it, but I am struck by how absolutely heartfelt and beautifully written it is. Thank you for baring your souls. This is an important work, which, like most everything else you've done, deeply touches many people in meaningful and significant ways. --JB, Los Angeles, CA

  • Your book, the best I've ever read in my life, has greatly lessened the dread I've been feeling for the futures of my grandchildren... I have never believed in miracles, but now I do. Your lives are proof! -- Grandmother, CA

  • WOW! Fabulous job. I've read most of the books you reference in yours, and in my mind, there is no competition. --PF, St. Louis, MO

  • "The Power of Two" is one of the most honest, open, powerful pieces of prose we have ever read... Your book is so much more than just sharing "the struggle;" it is what real, engaged living is about. It is alive because you two are life itself. Thank you for sharing your very souls with your readers. - Retired American literature teacher, CA

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Thursday, April 23, 2009

She's been given the gift of life

The media has been very much on board by covering Organ and Tissue Donation Awareness events during the month of April. Newspapers, TV and radio are being saturated with coverage about the importance of organ donation and registering to be an organ donor. This event in Langley, British Columbia is just one of thousands of similar activities in communities all across North America. All of this publicity has got to have an impact...at least I hope so.

Heart recipient Langley resident Diane Baker spoke at the BC Transplant conference at the Langley Events Center on Monday.
Photo: John GORDON/Langley Times

By Monique Tamminga - Langley Times

Diane Baker is alive today because someone else’s heart is beating in her chest.

For nearly five years now, the single mother of two now-grown children has woken up every morning and thanked her donor and her donor’s family for giving her the gift of life.

She’s seen both her kids graduate from high school and, recently, from universities.

“There are no words to adequately describe how profoundly awesome the gift of life is,” Baker told a crowd at the launch of BC Transplant’s organ donor awareness week, held at the new Langley Events Center on Monday.

Numerous transplant recipients, and those still waiting for organs, attended the kick-off, including Langley Township councillor Charlie Fox, whose wife’s kidney was a match to give him a second chance at life. She was able to give her kidney to her husband and he’s already back working for the Township, less than two months later

Baker’s heart never worked properly. Until five years ago, she thought it was normal to hear your heart beating all the time.

One day, after Baker celebrated her 49th birthday, she fainted while reading in bed. Her daughter Laura came to say goodnight and as the two chatted for a couple minutes, Diane went faint.

The very proud single mother of two asked her son Evan to drive her to emergency.

Baker had always had heart problems, being sent for angiograms with a heart that beat erratically. This came despite living a healthy lifestyle, both trying to keep as active as her heart would let her and eating well.

When she went into ER, doctors gave her a pacemaker because her heart was only beating 30 times a minute. She was told to go home and be active. She tried and couldn’t.

Four months later she ended up in emergency again and was sent for a heart biopsy where she was finally given a proper diagnosis. Sadly, that diagnosis was fatal.

Cardiac sorcoidosis with congestive heart failure, was what she was told.

“Virtually overnight, it seemed I was dying,” she said.

“I could only walk about 10 feet before I had to stop to catch my breath.”

The rare disease attacks the heart muscle.

“Usually, a person should have a hole in their heart the size of the tip of a finger. Mine was the size of a mandarin orange,” she said.

At first, she was told she wasn’t a candidate for a new heart.

Doctors believed the sacroid would attack her heart. Through all of it she was determined to stay alive for her kids’ sake.

But something in Baker refused to even think of death.

On the morning the hospital called to say they had a heart ready for her she told them she didn’t think she could go because she didn’t have a ride.

“I packed my suitcase but couldn’t lift it,” she said.

“When the paramedics arrived, I came to the door and asked for a minute.

“I hugged my kids and said see you tomorrow. I sent them off to school,” she said.

“I just didn’t believe it was happening,” she said.

But it did happen and she’s walking, living proof.

There are currently 11 Langley residents waiting for a life-saving organ transplant, including youth activist Todd Hauptman who is waiting for a kidney.

Richard Brown was also in the audience, breathing easier thanks to a double lung transplant nearly two years ago.

In total, 69 Langley residents are alive today thanks to an organ transplant.

In Langley, volunteers will be in malls, and in other locations throughout City and Township “to encourage the people of Langley to register their decision (about organ donation),” says BC Transplant spokesperson Lisa Despins.

While many people in the province remember the former method of registering as a donor, a decal on a driver’s licence, that system has been gone since 1997, Despins said.

BC Transplant wanted the system to be open not just to motorists, but to everyone, and to make it easier for medical staff to get the information in a time of emergency.

Today’s online system allows anyone to register, and allows them to specify which organs they wish or donate, a distinction which was not available with the old driver’s licence decal system.

“People can see, in black and white, what your wish is,” said Despins.

Langley is a little above the average, with 17 per cent of the population registering, while in Kelowna 23 per cent of residents have registered.

There are some 300 British Columbians on the transplant list, as recipients.

In 2008, a record 266 transplants were performed in British Columbia, the third consecutive record-setting year.

Contributing to this success was a historical high in the number of organs available from people who have died, and a 42 per cent increase in the number of donors from the year previous.

More information, and online registration as a donor is available at BC Transplant, or call 1-800-663-6189.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Wednesday, April 22, 2009

How question is asked is key in obtaining consent for organ donation: study

By Anne-Marie Tobin, The Canadian Press - TheRecord.com

TORONTO - The way that relatives of a brain-dead patient are approached can have an impact on whether they consent to donate the organs of their loved one, a new study suggests.

Interviews conducted with relatives at a later date have shown that about one-third of those who refused donation would not make the same decision again, according to the study published Wednesday in the British Medical Journal.

The researchers, based in the United Kingdom, decided to look at how medical officials asked the pivotal question, and what could be done to modify the way it was asked to increase the number of organs available for transplant.

"In the U.K. we have about 40 per cent of our (potential) organ donors we don't take organs from because the family refuses consent," explained one of the researchers, Dr. Duncan Young of John Radcliffe Hospital in Oxford.

"And we also know that these families, if you interview them later, either regret their decision or say they would have made a different decision ... and that suggests that when they said no to organ donation originally it wasn't based on some longstanding, deeply held belief but was possibly related to the way people asked the question."

The team analyzed 20 previous studies, and found a number of issues linked to relatives either saying yes or no to harvesting organs.

"If you looked after the relative well, if you're polite when you made the request, if you ask it in a private place rather than in a public place, you're much more likely to get agreement from the relatives," Young said in a telephone interview.

But there were other considerations that were slightly less obvious, he said, noting that the seniority of the person doing the asking makes a difference.

As well, timing is an important issue, the findings suggest.

Young said "if you separate the interview that tells the relatives that their nearest and dearest is brain dead from asking for the organs, you get a better response."

Frank Markel, president and CEO of Trillium Gift of Life Network, which co-ordinates transplants in the province of Ontario, said the study's findings fit "exactly with our approach to speaking to donor families."

"As they say, one of the biggest determinants is whether the family is approached by an experienced requester, and we agree with that entirely," he said.

The Ontario network includes 21 intensive care nurses who work as organ and tissue donation co-ordinators, and who are highly trained to be effective in speaking to families about donation, Markel said.

Every three months, they bring the co-ordinators in from across the province to practise situations.

"We have actors who play the role of families. We give them scripts which we tailor to specific circumstances, and we ask our co-ordinators to do mock requests that are observed by our managers who give them feedback," Markel said.

"We keep data on the consent performance of our co-ordinators. We show them their data."

Some experienced physicians who are champions of organ donation have good results when they talk to families on their own, Markel said, but that isn't the case for their less experienced colleagues.

"One of the biggest frustrations is when a junior physician takes it upon himself or herself to speak to the family, and those results are disappointing," he said.

The best results occur when a co-ordinator works collaboratively with the physician, who introduces the co-ordinator as an expert on end-of-life issues and sets the stage, he said.

Results are second-best when the co-ordinator speaks to the family by herself, and "we get the worst results when the physicians speak to family by themselves," Markel said.

There were 591 transplants from deceased donors in Ontario last year. Currently, there are approximately 1,700 people on the waiting list for a transplant in Ontario, and about 4,000 across Canada.

Teresa Shafer, chief operating officer of the LifeGift Organ Donation Center in Texas, wrote an accompanying editorial in the British Medical Journal, and also talks of the importance of the co-ordinators working for the organ procurement organization.

"Requesting consent is not popping a question. It's a process," she said in an interview from Fort Worth.

"And it sometimes can take hours. And you know, nurses and doctors, they don't have hours to work with a family, gather information that they want and so on. That's what we're there to do."

In the U.K., Young said, an organ donor registry allows doctors - prior to speaking to the family - to check whether a brain-dead patient had signed an organ donor card. But that still doesn't compel the family to agree.

Young said there's a shortage of organs for donation in the U.K., and worldwide.

"The most immediate way we can increase the number of organs is probably to alter the way we ask for them," he said. "Because the biggest single cause of failing to get organs is the family's refusal."

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Tuesday, April 21, 2009

TRILLIUM GIFT OF LIFE NETWORK LAUNCHES RECYCLEME.ORG

(l to r) David Caplan, Minister of Health and Long-Term Care, Aaron Kucharczuk, Youth Advisory Panel Member, Rabbi Bulka, Chair of Trillium Gift of Life Network (TGLN) Board of Directors, Frank Markel, President and CEO of TGLN unveiled TGLN's first-ever campaign directed at youth to raise awareness about the critical need for organ and tissue donation in Ontario.

As a member of the Trillium Gift of Life Network's Provincial Volunteer Committee I was privileged to be part of the approval process for this bold and exciting new campaign to reach out to our youth about the need for organ and tissue donation. I was absolutely floored by the preview of this campaign that relies heavily on the way our young people think and live, using language and terms that are part of their culture along with the electronic way they have of communicating. The banner ads for subways and buses are eye-catching and maybe even provocative, but I'm betting they will have a major impact. I wouldn't be surprised if other jurisdictions adopt this approach in their campaigns.

Awareness campaign urges youth to consider organ donation

TORONTO, ON – April 20, 2009 – Trillium Gift of Life Network (TGLN) took a bold step today and launched its first-ever campaign directed at youth to raise awareness about the critical need for organ and tissue donation in Ontario. The provocative new campaign, geared at reaching 15 to 24 year-olds is anchored by a new website, RecycleMe.org, which asks young people to consider the critical need for donors and the ultimate act of ‘recycling’. The campaign, which aims to increase donor consent registrations, was developed with the support of a youth advisory panel and will run for 10 weeks.

“This is our most important campaign to date,” said TGLN President and CEO Frank Markel. “It’s about starting a movement among young people and creating a culture of organ and tissue donation in this province. “Every three days someone dies waiting for an organ transplant and it is our belief that this campaign will let young people know that they have the power to help save lives.”

To develop the campaign, TGLN created and worked with a youth advisory panel over a period of six months to ensure its messages would speak to the intended audience. “Today’s youth are bombarded with thousands of messages every day and we knew that to break through, we’d need to listen to them about what stuck,” said Markel. “This campaign is a direct result of what they told us. It’s 100% for youth, by youth.”

The launch of the campaign is part of the Ontario Government’s provincial Organ and Tissue Donation Strategy designed to build awareness about the need for organ and tissue donation which will be rolled out over the next two years

“With almost 1700 Ontarians currently on the waiting list for a transplant, we have a responsibility to build awareness and education - especially among our youth,” said David Caplan, Minister of Health and Long-Term Care. “Research has shown that organ and tissue donation is simply not on the radar screen of most youth. This campaign is an important step towards creating greater awareness and increasing donor rates.”

Running throughout the spring and into the summer, the province-wide campaign includes gripping transit and online ads, as well as wild postings and social media activations, which drive youth to the website. RecycleMe.org includes inspirational testimonials from youth who have had personal experiences with organ and tissue donation, raw video footage that features actual transplants, and a discussion forum.

The site gives youth the chance to ‘join the movement’ and pledge their support for organ and tissue donation.

Aaron Kucharczuk, a 24 year-old student from the University of Toronto was one of the panelists who helped inform the campaign. “The problem with the issue of organ donation is that it hasn’t caught our attention like a lot of other causes that are well known,” said Kucharczuk. “We believe this campaign is going to put the issue on our radar and really get people thinking and mobilized in a powerful way.”

Besides the youth panel, TGLN consulted with various stakeholders groups throughout the development of the campaign including the Donor Family Advisory Council, Provincial Volunteer Committee and health care professionals. “My father passed away while waiting for a heart transplant,” said 18-year-old Jaynel White, whose father made the decision to donate his organs while on the waiting list. “Even though he lost his life, there are multiple people who are alive today thanks to him.

This new youth campaign can only help to save more lives, and hopefully prevent another child from having to say goodbye to a parent.”

Today in Ontario, nearly 1700 patients are on the waiting list.

Facts about organ and tissue donation in Ontario:
  • Every 3 days someone dies waiting for an organ transplant.

  • One organ donor can save up to 8 lives and enhance the lives of up to 75 others through tissue donation.

  • Everyone is a potential organ and tissue donor, regardless of his/her age. To date, the oldest Canadian organ donor was over 90 years of age while the oldest tissue donor was 102 years old.

  • Even an individual with serious illness can sometimes be an organ or tissue donor.

  • The organs and tissue that can be donated include: heart, liver, kidneys, pancreas, lungs, small bowel, corneas, heart valves, bone and skin.

  • Most major religions support organ and tissue donation.

  • Organ and tissue donation does not affect funeral services and you can still have an open casket.

About Trillium Gift of Life Network

Trillium Gift of Life Network is a not-for-profit agency of the Government of Ontario and is responsible for planning, promoting, coordinating and supporting organ and tissue donation across Ontario and improving the system so that more lives can be saved.

“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 at Trillium Gift of Life Network
For other Canadian provinces click here

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Monday, April 20, 2009

I celebrate the 7-year anniversary of my lung transplant today

That's me in the ICU  just 3 days following my surgery on April 20, 2002. I can remember thinking about how I was going to "give back" but my body wasn't ready to respond just yet. (click image for larger photo)

Last week I had the seven-year assessment of my lung transplant at Toronto General Hospital. I will be forever grateful and thankful to all those who made it possible for me to have a second chance at life. I was in end stage repiratory failure due to idiopathic pulmonary fibrosis with little hope for the future. I say silent thanks each day for my donor and donor family, for my surgeon Dr. Shaf Keshavjee, Dr. Lianne Singer and the entire lung transplant team and staff at Toronto General who were so wonderful to me. I'm also very thankful to the staff of Trillium Gift of Life Network in Ontario for promoting organ donation and coordinating with critical care staff and donor families in our hospitals.

Since my transplant, in addition to maintaining this blog, I have been an advocate for organ donation awareness and fund raising for lung transplant research at Toronto General Hospital. Most of my activities are recorded in a photo journal at http://www.pbase.com/mshepp. I'm also on the Provincial Volunteer Committee for Trillium Gift of Life Network in Ontario and am an "Ambassador" for lung transplant research and the importance of participation in clinical trials in transplant research.

My assessment went well and I can honestly say that life is better than I can remember it ever being. My health is great, my weight is perfect and I have more friends now than I could have ever imagined. When they say that an organ transplant is life-transforming there's no question about it, at least in my case.

I'm extremely happy to be alive even, considering that I was near death before my transplant and so incapacitated that I couldn't even bend over to tie my own shoes. And that was while I was on oxygen 24/7. Life is sure great, isn't 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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Tragic End To Organ Donation Run

My condolences go to the family and friends of this young man who was running in an effort to save lives by encouraging organ donation awareness. Let's hope that his death will not be in vain and that the publicity generated by his tragic loss will lead to more people registering to become organ donors.

PHILADELPHIA CBS 3.com

An event to inspire those to save a life had a tragic end after the collapse of a teenage runner Sunday morning.

Officials said a 19-year-old student at Furness High School collapsed while participating in the "Dash for Organ Donor Awarness" with classmates.

The student was rushed to an area hospital where they were pronounced dead. Further details were not immediately available.

Thousands participated in the run, including transplant candidates, recipients, family members, hospital personnel and donor family members.

The annual "dash" is just one of several events held through the month in the Delaware Valley by the Gift of Life donor program.

"It's our signature event," said John Green, Community Relations director for the Gift of Life. "It's one of our ways to highlight the critical need for more organ and tissue donors."

April is designated as National Donate Life Month with more than 100,000 people awaiting life-saving organ transplants.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Saturday, April 18, 2009

Organ Donor Registration drive personal for Brockville, Ontario woman

Pamela Harper holds a picture of her daughter, Katherine Paine, who died two years ago after waiting too long for a heart transplant. Ronald Zajac/Staff Writer

By Ronald Zajac The Recorder & Times

Pamela Harper has been working hard to make sure other parents don’t suffer a loss as terrible as her own.

She hopes the fruits of that labor will take the form of signatures at an organ donation awareness event next weekend.

“The main thing is the registration drive,” said Harper, organizer of the Organ and Tissue Donation Awareness and Registration Drive taking place at St. Mary Catholic High School on Sunday, Apr. 26.

The event will feature guest speakers, a “living green ribbon” and efforts to get as many people as possible to sign organ donation consent forms.

Harper believes more signatures on donation forms might have prevented the tragic loss of her daughter, Katherine Paine, to whom the event is dedicated.

Katherine, who was 12 and a St. Mary student when she died, was born with a heart defect that was compounded by an infection in 2006.

In September of that year, Katherine was put on a waiting list for a heart transplant and it took five months for a heart to become available.

“I believe she would be alive today if we hadn’t have had to wait so long,” said Harper.

A heart finally became available for Katherine in February 2007, but by then the health complications had made the transplant impossible.

“She didn’t have the fight,” said Harper.

The registration drive aims to prevent other families from going through such an agonizing loss.

“The idea is to close the gap on the waiting period,” said Harper.

“Children like Katherine, we wouldn’t have to lose them prematurely if that gap was smaller.”

The Apr. 26 event starts at 2 p.m. and will feature testimonials from guest speakers.

Harper will share her own story, while former Brockville Mayor Ben TeKamp and his daughter, Robin, will recount their own transplant story.

Robin TeKamp gave a kidney to her father almost exactly two years ago.

Ben Giroux, a 15-year-old heart recipient from Ottawa and his mother, Misty, whom Harper met during her daughter’s ordeal, will also share their story, while speakers from the Ontario East Transplant Support Group will discuss organ donation on behalf of the Trillium Gift of Life Network.

There will also be a bit of comic relief – although not for the faint of heart.

The agenda includes a brief video presentation entitled “How Not to Ask for Donations,” featuring the irreverent and more than a little bloody “Live Organ Transplants” sequence from Monty Python’s film The Meaning of Life.

Harper said the clip aims to capture a bit of her late daughter’s particular sense of humour.

“She loved gross stuff, she loved gory stuff and she had a great sense of humour,” she said.

“It’s such a heavy subject. I think a bit of humour is needed.”

On the more serious side, the event will include a “living green ribbon” ceremony in the schoolyard, in which participants will form the Trillium Gift of Life green ribbon symbol, with each person in the formation representing someone on the transplant waiting list.

Harper does not have a specific target figure for consent form signatures, but she hopes to have 250 of the forms on hand at the event and discuss ways those forms can be made more easily available to people.

And while this kind of community organizing is not Harper’s specialty, all that work has had a cathartic effect for the grieving mom.

“Even though Katherine is gone, I still feel I’m taking care of her,” she 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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Thursday, April 16, 2009

Lung Transplant Research Ambassadors

It was my great honor to be included in a group of lung transplant recipients from across the continent who recently gathered in San Francisco to form an organization to promote the importance of research in lung transplantation. This is a photo of the lung recipients that attended and we are now all back at our respective transplant centers promoting the importance of research and participation in clinical trials.

Front, from left: Ana Stenzel, Stanford, Gloria Rodriquez, UCLA, Tina Orlita, Univ. of Chicago Medical Center, Bette Luksha-Gammal, Univ. of Florida, Doris Lowenthal, INOVA Health Systems, VA, Missy Peterson, Univ. of Colorado, Denver.
Back row, from left: Merv Sheppard, Toronto General Hospital, Chris Sanborn, Baylor Univ., Houston,Texas, Ben Mazzone, Loyola Univ, Chicago, Kip Peterson, Univ. of Minnesota Medical Center, John Sullivan, Univ. of Pittsburgh, Bill Berkson, Univ. of California, San Francisco, Angel Oliva, Tampa General Hospital, Sam Jones, Cleveland Clinic.
(Click image for larger photo)

I hadn't met any of the people in this photo before going to San Francisco but when I got there it was like a family reunion with everyone socializing and chatting as if they'd known each other for years. That's the special bond that forms with organ recipients.

I will be posting much more about the Lung Transplant Research Ambassadors, their mandate and how they came to be. But for now, I would like to thank Ana Stenzel for her initiative in organizing this with APT Pharmaceuticals and a huge thank you to APT Pharmaceuticals for sponsoring this event. APT currently is sponsoring a multi-center clinical trial with the objective of evaluating the effect of chronic rejection in recent recipients of a lung 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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Wednesday, April 15, 2009

Walking 95 miles for lung recipient's charity: LAM Action

By Alison Anderson PerthshireAdvertiser.co.uk

BRAVE Methven woman Audrey Ferguson is well on the road to leading a normal life again after undergoing a life-saving – and initially unsuccessful – lung transplant last August.

She says a miracle pulled her through the ordeal – a miracle fuelled by the faith and prayer of family and friends.

Now Audrey (36) can look forward to the future. Understandably, however, walking the gruelling 95 miles of the West Highland Way would be a step too far for her, but she will be cheering on the 21 walkers who are undertaking the trek later this month to raise money for the charity LAM Action.

LAM (lymphangioleiomyomatosis) is the rare, incurable lung disease which began to affect Audrey when she was still in her teens.

The disease causes the lungs to waste away, and affects only women. There are believed to be only 120 LAM patients in the UK.

“I’m really touched that my friends are making this gruelling trip to raise money for such a worthwhile cause,” said Audrey. “Just because this terrible disease is so rare, it’s no less life-shattering for patients and their families.”

The walkers – most over aged 50-plus – set off from Milngavie on the outskirts of Glasgow on Monday, April 20, and walk the 95 miles of the West Highland Way in four days to arrive at Fort William on April 24.

Their two-pronged aim is to raise money for LAM Action to help fund much-needed research and also to raise public awareness into the disease, which often goes undiagnosed by the medical profession.

Audrey endured several years of major health problems before she was diagnosed as a LAM patient in 1997, aged 24.

“I had about 10-14 lung collapses until I was operated on in April 1997 to stick my lung on to my rib cage.

“A biopsy taken during surgery diagnosed that my condition was LAM.

“Not much was known about LAM and there was no LAM Action at that time.

“My condition gradually deteriorated. I was on oxygen for 16 hours a day then more or less all the time for two years until my transplant in August.

“I tried not to let it affect me too much, but I obviously had to adapt my lifestyle.”

Audrey was desperately in need of a lung transplant, and after eight false alarms, a suitable donor lung became available.

“I am very appreciative of the donor family for allowing the transplant to go ahead. I hope the family can take comfort from the fact that good and hope for so many people can come out of their tragedy.”

The transplant in the Freeman Hospital, Newcastle, and its aftermath were worrying times for Audrey, her husband Adrian and other family and friends, and because Audrey only had one lung transplanted, she still knows her other lung is affected by LAM.

“The operation itself went well but there were a lot of complications.

“The new lung just did not work and for the first 24 hours it looked as if I would not pull through.

“But miraculously the lung did start to work after a second investigatory operations.
“We are Christians and people were praying for me all over the world so I believe it was a miracle.”

After that life-saving second operation, Audrey remained in Intensive Care at the Freemantle for 25 days and it was to be early October before she arrived home, with still a long recovery process ahead of her.

“Adrian and my mum and dad, Anna and John Campbell, stayed down in Newcastle for the full seven weeks. It was a worrying time, but when I started to make progress it came quite fast.

Audrey even had to learn to walk again as well as gradually increase her lung capacity and general strength. Her recuperation continues and life is creeping back to normality: “It could be two years before my lung reaches full capacity but at the moment I can live a pretty normal life.

“We’ve even booked a summer holiday, our first for quite a few years!”

Audrey would be delighted if a cause and/or a cure could be found for LAM. “LAM arises from a defective gene but no one knows what causes the defect.

“And LAM Action are involved in ongoing drugs trials, but it is difficult to get funding for research because it’s such a rare condition.

“Since LAM Action was set up doctors and consultants know much more about the condition and patients are diagnosed quicker.”

The charity also provides valuable support networks, which Audrey asserts certainly helped her. She hopes people will rally round to sponsor the West Highland Way walkers, who aim to raise £2000-plus for LAM Action.

To sponsor the walkers visit http://www.justgiving.com/overthehillwalker and to find out more about lymphangioleiomyomatosis go to http://www.lamaction.org.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Tuesday, April 14, 2009

In-laws crowd organ donor list in India

by Jinal Shah iexpressindia.com

Mumbai Doctors overseeing organ transplants across the state have found a worrisome detail: a large number of kidney transplants in Maharashtra where the donor is not a relative of the patient involve donation of the organ by a wife’s parent or sibling.

“We have got about 32 to 40 cases a year where male patients have a parent-in-law or a brother-in-law or sister-in-law as donor,” said Dr Pravin Shinghare who heads the state-level authorisation committee for organ transplants. The committee must give its nod to all transplants where the donor is not an immediate relative.

“This amounts to 40 to 50 per cent of cases where the donor is not a relative,” Shinghare said. He added that in most such cases, recipients bring certificates to the committee to prove that their biological parents are medically unfit to donate.

Every year, Maharashtra sees 150 to 175 live kidney transplants, and approximately 80 of these involve donors who are unrelated to the patient. The state authorization committee is entrusted the task of finding the motive behind the transplant. While women’s rights groups said it is alarming if the numbers were accurate, the authorization committee says this is simply an observation, for now.

Doctors began to see how common such a practice is when a recent suggestion from the Maharashtra committee on amendments to the Transplantation of Human Organs Act (THOA), 1994, was turned down by the Centre. The suggestion had been to include uncles and aunts in the list of “near relatives” who could be donors. Currently, near relatives — mother, father, brother, sister, spouse, son and daughter — can directly donate organs at the hospital level without having to approach the authorization committee.

The suggestion was rejected since experts felt it could expose the wife’s family to undue pressure for donating an organ to a recipient in the groom’s family.

However many nephrologists in the city think otherwise. “There are many in-laws who are altruistic donors. Also, Indian families are very closely knit. Some percentage of undue pressure should not stop the state from widening the ambit of near relatives to uncles and aunts and even to in-laws with altruistic intentions,” said Dr Umesh Khanna consultant nephrologists at Asian Heart Institute and chairman of the Mumbai Kidney Foundation. This would help reduce the instances of commercial transplants, he added.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Monday, April 13, 2009

By MARY SWIFT Daily Record - Ellensburg,WA,USA

EASTON — For the second time in her still-young life a 24-year-old Easton woman dying of liver failure has received a transplant — and a new lease on life.

The transplant came Thursday at the University of Nebraska Medical Center in Omaha.

Kristen Everett was just 4 the first time she received a transplanted liver.

Last August, she was placed on the national organ donor list after doctors deemed that an internal stint had failed and a new transplant was needed to save her life.

With her health failing rapidly, Kristen and her mother, Chris Everett, took up temporary residence at the Lied Center in Omaha, a facility next to the hospital, at the end of February so that there would be no delay in getting to the hospital when a call came saying a donor liver had been found.

That call came early Wednesday.

By 5:30 a.m. Larry Everett, her father, was on a plane in Seattle hoping to get to Omaha in time for a hug and a chance to wish her good luck.

By 6 a.m. she was being admitted and prepped while an organ retrieval team acquired the new liver.

Larry Everett’s race to get to Omaha before she entered surgery took a bad turn a few hours later. By 10 a.m., following a plane change in Denver, it was clear he’d have to settle for a phone call.

His flight aborted at take-off due to a fire involving flight instruments. Stuck on the airplane for two hours, he finally spoke with the pilot and explained his situation.

“He said, ‘Let me make a couple of calls’ and came back 45 seconds later and said they were bringing steps up to the plane and would get me on a plane leaving in about 20 minutes,” Everett says.

“Several hours later we would hear the surgeon say it was a perfect textbook procedure.”

Everett said Kristen’s surgery began about 11:15 a.m. and concluded at about 6:45 p.m.

By 9 p.m. Kristen, who had looked “the color of French’s mustard” prior to the surgery, was in intensive care. The jaundice was gone from her hands and feet and retreating from the rest of her body.

A former stand-out volleyball player at Mt. Si High School, Kristen also played the sport in college.

Her commitment to conditioning stood her in good stead in her health battles, he said.

“Due to her ongoing commitment to condition we’re told she is marvelously ahead of normal recovery,” he said. If all goes well, she could be out of the hospital and back at the Leid Center by Tuesday.

But the next three to four days are critical.

They’ll determine whether Kristen’s kidneys have been able to hold up the steroids she has gotten to prevent the liver from being rejected.

“Those next four days are touch-and-go,” Everett said. “If her kidneys don’t hold up her mother is standing by to donate a kidney.”

The key to getting a transplant, Everett has said in the past, is to get sick enough to go to the top of the list without dying. It can be a delicate dance.

“Seventeen people die every day waiting for an organ,” he said. “She got really close. This (organ transplantation) is one of the cures available — if people really care.”

Kristen, a Notre Dame University graduate who was working on a master’s degree in psychology at Notre Dame’s campus in California, plans to return to college after she recovers. Everett said there is the possibility she might eventually work as a psychologist with the transplant team.

Though the surgery is covered, much of the pre- and post-surgery expense is not. Donations to help the family cover those expenses may be sent in Kristen’s name to the Upper County Community Church, P.O. Box 33, Easton WA 98925. Donations to the church are tax-deductible.

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Sunday, April 12, 2009

Indiana ranks third in drivers willing to be donors

By Arthur E. Foulkes Terre Haute News

TERRE HAUTE — Spring brings new life and April is Donate Life Month — designed to focus attention on the life-renewing act of organ donation.

Indiana ranks third among the 50 states for licensed drivers who have indicated a willingness to become organ donors, said Sam Davis, director of professional services and public affairs at the Indiana Organ Procurement Organization in Indianapolis.

Hoosiers “are kind, giving people,” Davis said, explaining Indiana’s relatively high participation rate. “People in Indiana are generous.”

Despite Indiana’s many potential donors, many more are needed, Davis said. There are more than 1,000 Hoosiers awaiting organ transplants and more than 100,000 people nationwide, he said. An average of 18 patients in America die each day waiting for an organ transplant, according to IOPO figures.

“Time is running out” for patients waiting for organ donations, Davis said.

Hospitals in Terre Haute are raising awareness this month about the need for organ donations. Union Hospital is marking Donate Life Month by flying a “Donate Life” flag below the American flag on its pole in front of the facility. Terre Haute Regional Hospital is marking the month by flying a “Donate Life” flag and with a ceremony April 21.

“It’s something that most of us believe in very deeply,” said Sandy Thompson, director of critical care and medical surgical nursing at Union.

“It’s something that [medical officials at Regional Hospital] are very passionate about,” said Mindy Balka, a spokeswoman for the south-side facility.

In 2008, organ donations that originated at Union Hospital were one heart, two lungs, four kidneys, two livers, two pancreases and one intestine. In all, those organs saved 12 lives last year, Union officials said.

A single donor recently saved the lives of six different people, said Dr. Ron Leach, medical director at Union.

According to IOPO, 441 people benefited from 138 organ donors in Indiana last year. A single donor can save the lives of up to eight people, according to IOPO’s Web site, www.iopo.org.

No organ transplants take place in Terre Haute. Methodist Hospital at Indianapolis is a common site for transplant operations, Leach said.

One goal of Donate Life Month is to dispel common myths about organ donation. One myth is the fear that registered donors will receive less care in the hospital if doctors and nurses know they are a donor. This is false, Leach said. “You will get treated like everybody else.”

Another myth is that only young people can sign up to be organ donors. This isn’t true, either, Leach said. Some tissue donors at Union have been in their 70s, he said. The oldest recorded kidney donor was 92, IOPO’s Davis said.

Organ donors must be declared “brain dead” before their organs can be “harvested,” Leach said. Once brain death occurs, IOPO takes over and the donor is no longer responsible for the hospital bills that are accumulated after brain death takes place, he noted.

The cost of most organ transplants is between $100,000 and $250,000, Leach said. Some may cost around $500,000, he added. The success rate for most types of organ transplants is more than 90 percent, he said.

And while about 3.1 million Hoosiers have agreed to become donors, just making that commitment doesn’t guarantee you will ever actually be an organ donor. Nearly all donors die from “catastrophic events,” such as accidents or suicides. And just signing the back of your driver’s license does not guarantee you can become a donor. It’s important to discuss your wishes to be a donor with family members to make sure your intentions are carried out, Thompson said.

For more information on becoming an organ donor, visit Donate Life Indiana

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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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

Friday, April 10, 2009

SC drivers respond to new organ donation registry

It's great to see that more and more jurisdictions are implementing on-line donor registries. You can find out where to register where you live by clicking on the links at the end of this post.

The State

COLUMBIA, S.C. -- South Carolina drivers are responding to a new organ donation registry.

LifePoint Inc., the organ recovery service designated by the federal government for South Carolina, says more than half of drivers getting a license since the registry's December launch have also become donors.

The service says the registry will contain 100,000 people by Friday.

Residents can sign up online or at Department of Motor Vehicles offices.
As of January, more than 775 South Carolinians were on waiting lists for organ transplants.

The United Network for Organ Sharing says that, on average, 45 South Carolinians on waiting lists die every year.

South Carolina Links:
Donate Life South Carolina
The Donate Life Registry


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

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

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

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

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