Thursday, March 31, 2011

University of Pittsburgh Medical Center performs record 131 lung transplants

The University of Pittsburgh Medical Center performed a record 131 lung transplants in 2010, the most of any transplant center in the United States, the hospital network announced on Tuesday.

UPMC surgeons performed more than 1,300 lung transplants since its lung transplant program began in 1982. In each of the past four years, the program has done more than 100 transplants.

All together, UPMC performed 516 organ transplants last year, according to data compiled by the United Network for Organ Sharing.

“These are serious, debilitating conditions, and our goal is to help people have a better quality of life and a better chance at survival,” Dr. Yoshiya Toyoda, director of UPMC’s cardiothoracic transplantation program, said in a prepared statement.

Source: Pittsburgh Business Times by Kris B. Mamula

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

Wednesday, March 30, 2011

Sensing Organ Rejection

Rejection hurts, but for organ transplant patients it's more than an emotive issue—it can be a matter of life and death. Having waited months, sometimes years, for a donor and survived major surgery, transplant patients face an uphill battle to prevent their immune systems from rejecting their new organ. Now a new test in which a transplant patient's blood is scanned for DNA from the donor organ can alert doctors if serious rejection has begun, allowing them to try to stop the process.
Approximately 40% of transplant patients experience at least one episode of acute rejection in the first year after they receive an organ. Catching any major immunological backlash early is key to minimizing its effects, especially because most rejection episodes are reversible with a large dose of immunosuppressant drugs. But patients typically must undergo regular biopsies of their new organ to monitor its health; the procedure is both painful and expensive, and biopsies also risk damaging the organ, explains cardiologist Hannah Valantine of Stanford University School of Medicine in Palo Alto, California. In 2009, Valantine developed a noninvasive rejection test that relies on monitoring a patient's immune system. AlloMap became the first U.S Food and Drug Administration-approved test for heart transplants, but it still fails to catch about half of rejection events.
To capture the rest, Valantine recently headed back to the drawing board. This time she enlisted help from biophysicist Stephen Quake of Stanford. Together they designed a test that relies on the fact that a transplanted organ's genome is distinct from that of its new host. The test monitors fragments of DNA released by the organ into the blood, when cells from the transplant tissue are naturally broken down. To validate this strategy, the researchers tried their test on stored blood plasma from organ transplant patients, some of whom had had confirmed rejection episodes. During a rejection event, the levels of circulating DNA from the donor organ go up, making up on average 3% of free DNA in the recipient's blood rather than the typical 1%, the researchers reportonline today in the Proceedings of National Academy of Sciences.
Valantine hopes that this test can eliminate the need for regular biopsies as a means of rejection monitoring; patients often have one every month in the first year after a transplant. Instead, physicians would perform confirmation biopsies only if the DNA test results were positive. The new test can detect "very low levels of DNA to predict rejection," Valantine says, making this approach more sensitive than the AlloMap test. If the test can alert doctors to rejection earlier, she notes, they can "tinker" with the levels of immunosuppressant drugs rather than go in with "a big-gun approach" that lowers the patient's immune system so much that they are at risk of infection and cancer.
Bruce Rosengard, the surgical director of the cardiac transplantation program at Massachusetts General Hospital in Boston, is cautiously optimistic about the new test. "Organ rejection remains one of the primary obstacles to transplant success," he says. "Anything that we can do to reduce the number of heart biopsies is a very positive development. ... I think this approach will gain traction pretty quickly."


Valantine hopes to have the new test available to doctors in a year's time, adding that she sees no reason why it can't be used to detect rejection of other transplanted organs.



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Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Tuesday, March 29, 2011

Donation After Cardiac Death' Worsens Liver Transplant Survival

Medscape.com

NEW YORK (Reuters Health) - Liver transplant patients have significantly worse survival odds with grafts obtained after cardiac death instead of brain death, according to a study of U.S. data.

"Donation after cardiac death" (DCD) livers are known to have relatively poor graft survival, according to a February 19th report in the Journal of Hepatology, but studies of patient survival have only looked at small cohorts - until now.

Dr. Anton Skaro and colleagues from Northwestern University in Chicago analyzed national data from the Scientific Registry of Transplant Recipients on more than 43,000 liver transplants -- 1113 from DCD donors and 42,254 from brain death donors.

Patients who received DCD livers were generally older compared to the other patients, but they had fewer risk characteristics (lower MELD scores, less likely on life support, and less likely to be hospitalized) and more favorable transplant factors (younger donor age, shorter cold ischemia time, and lower rates of vasopressor use).

Despite these favorable features, 1- and 3-year patient survival rates were 82% and 71%, respectively, with DCD livers compared to 86% and 77% with livers obtained from after brain death (p<.0001 for survival after primary transplant).

 After adjusting for differences in donor and recipient factors, DCD recipients had a 44% higher mortality risk.

 "This increased hazard for mortality is similar in magnitude to the mortality risks of other well-known donor and recipient factors," the investigators note, including older donor age, older recipient age, and hepatitis C or hepatocellular carcinoma in the recipient.

 The mortality risks got worse, though, when DCD organs were combined with cold ischemia time greater than 12 hours (hazard ratio 1.81), shared organs (HR 1.69), hepatocellular carcinoma (HR 1.80), recipient age older than 60 (HR 1.92), and renal insufficiency (HR 1.82).

 But beggars can't be choosers.

 "Many of these patients may have not been offered a (brain death) liver, so survival results of 82% at one year and 71% at three years should be considered in light of the high mortality risks associated with remaining on the waiting list," the researchers say. "This is especially salient given that 30-day mortality is between 19% and 47% for patients with a MELD greater than 20."

 Retransplantation was required more than twice as often after DCD transplant (14.7% vs 6.8%; p<.001), but survival after retransplantation did not differ significantly according to the original graft source.

 SOURCE: http://www.bit.ly/i0pxTi

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

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

Monday, March 28, 2011

Revolutionary alternative to heart transplant wins national UK award

Calon cardio heart Ca
Calon cardio heart pumpCpump

By Madeleine Brindley Wales Online
THE makers of a revolutionary heart pump, which could be an alternative to a transplant, have won a major award.

Calon Cardio-Technology Ltd, based at Swansea University’s Institute of Life Science, was presented with UK Trade and Investment’s best breakthrough technology award.

The company is developing new implantable pumps for the treatment of heart failure, which are cheaper than the current models available and do not require such invasive surgery to fit.

The award comes as Calon Cardio is hoping to secure £5m in funding to start acute and chronic trials of the device.

Calon Cardio was formed in 2007 and is a collaboration between Oxford artificial heart pioneer Professor Stephen Westaby and Wales-based Prof Marc Clement.

Prof Westaby, the firm’s medical director, said: “Heart failure is the commonest and most unpleasant mode of death affecting thousands of people in the UK.

“Last year there were just 90 heart transplants and so we are working towards producing a more realistic off-the-shelf alternative, which is a smaller and more affordable device implanted using less invasive surgery.

“Our aim is to relieve symptoms, prolong the life for patients with chronic heart failure and provide a rescue device for patients who are dying from heart attack.”

Prof Clement, who is also vice-chancellor of the University of Wales and an honorary professor at Swansea University’s College of Medicine, said: “This is a truly transformational product that could make a huge difference to our quality of life.”

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Sunday, March 27, 2011

Organ Rejection Risk After Lung Transplant Doubles Due to Road Traffic Pollution Exposure


I look out any of my windows and all I see are cars and commercial vehicles. I've never given a thought that being so close to all of this traffic could lead to rejection of my lung transplant. Anyway, this April I will be celebrating the 9-year anniversary of my transplant. So far so good.

Belgian researchers have found that lung transplant patients have double the risk of organ rejection and death within five years of the procedure if they live near a main road.

The researchers tracked the health of 281 patients who had undergone a lung transplant or retransplant at the same hospital between 1997 and 2008 until 2009.

They took into account how far these patients lived from a main road and therefore a source of airborne road traffic pollution to see if this had any impact on their survival rates, as pollutants are known to trigger inflammation.

Around half of all patients who undergo a lung transplant develop a serious inflammatory condition called bronchiolitis obliterans syndrome within five years of having the procedure, say the authors.

The syndrome, which is caused by an overactive immune system, is the clinical equivalent of organ rejection and is considerably more common in lung transplant recipients than it is in other solid organ transplant patients - possibly because of the lung's direct contact with the environment, they add.

During the monitoring period, 117 patients (41 percent) developed the syndrome, one in five of whom (61) died.

Gender, age, or type of transplantation (single or double) had no bearing on the risk of death, the findings showed. But a clear pattern emerged for proximity to a main road.

Those who lived within a 171 meter (560 feet) radius of a main road were twice as likely to develop the syndrome and more than twice as likely to die as their peers who lived further away from this source of pollution.

Furthermore, the calculations showed that for every 10-fold increase in distance from a main road, patients were 43 percent less likely to develop the syndrome and 28 percent less likely to die.

Lung lavages (washing out of the lungs) and blood samples taken from 207 lung transplant recipients also showed that levels of inflammatory markers were associated with distance from a main road: the greater the distance from a main road, the lower they were.

The findings prompt the authors to conclude that one in four cases of bronchiolitis obliterans syndrome and almost 30 percent (28 percent) of deaths in lung transplant recipients across the country could be attributed to living near a major road.

The study has been published online in Thorax.

Source: Med India

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Friday, March 25, 2011

One year since Eva Markvoort's lasting mark on the world


BY MARTINA MECKOVA, SPECIAL TO The Vancouver Sun

This week marks one year since Eva Markvoort lost her battle with cystic fibrosis, but her legacy continues to grow and inspire many beyond the cystic fibrosis community. In her short life, Eva worked valiantly to educate people about cystic fibrosis, a disease she was diagnosed with at the age of one. She fought with veracity and strength for 25 years, as long as her body would allow. She also worked to promote organ donation, a subject she knew all too well, having survived for a short while after a double-lung transplant.

Eva lived passionately and with purpose, leaving a legacy of love and making a difference in the lives of thousands of people in her personal life and in her online community. Eva touched people all over the world through her blog 65_RedRoses and was also the subject of an award winning documentary of the same name. Her magnetic personality, creativity, and honesty drew people in at every turn.

Eva's online community, dedicated friends and family, along with Cystic Fibrosis Canada and open-hearted strangers have come together to continue her lasting and powerful legacy. Over the past year, those touched by Eva's incredible spirit have raised over $200,000 through various fundraising efforts and projects.

One such project is a magnificent work of art called 65 Red Roses that was comprised of individual red roses created by 65 Canadian artists as a tribute to Eva. The piece was donated by the Federation of Canadian Artists to Cystic Fibrosis Canada to use as a fundraising tool in the organization's mission to find a cure for cystic fibrosis. In less than one year, the painting has generated more than $65,000 and raised a new level of awareness for Eva's message. The original painting will soon find a home in the main foyer of BC Children’s Hospital. To find out more about the painting, please visit CFVancouver.ca.

Artists, friends, family and supporters gathered last May to celebrate the unveiling of this stunning work of art. Since then there have been many events and gatherings of friends, including a lawn bowling tournament, a fashion show and media campaign, the Key to a Cure campaign, a bike ride across Canada, and the ongoing success of the 65_RedRoses documentary. Most recently, Cystic Fibrosis Canada hosted a benefit concert starring local music and film talent as a tribute to Eva. A sold out theatre of over 1,200 fans and friends enjoyed an inspiring show. Each of these events has been dedicated to accomplishing what Eva championed the most: bringing people together to enjoy life, helping find a cure for cystic fibrosis, and creating awareness for organ donation.

In addition, last May Cystic Fibrosis Canada launched Reddy for a Cure, an ongoing fundraising and awareness campaign designed to further Eva's legacy. Supporters dyed their hair bright red, walked hand in hand at the Great Strides Walk, and raised over $40,000 in just two weeks. The Reddy for a Cure Team will be walking together again on May 29th, 2011 at Queen's Park in New Westminster. To find out how you can participate please visit cfvancouver.ca.

“The wonderful celebrations and events that have been held over the last year, each with a purpose, have fulfilled Eva’s dreams of leaving a worthwhile and long lasting legacy for CF, for Organ Donation and for life itself. It is a beautiful world, and Eva knew it!”, said Janet Brine, Eva’s mother.

In February 2010, after receiving the Cystic Fibrosis Canada National Summerhayes Award for her efforts and advocacy, Eva said “One of the most important things for me to do is to create a legacy. This really makes a difference because it means that I made a difference. When I die, this is what’s left.”

The positive energy, passion and unwavering commitment continues to inspire these events and is evidence that Eva did make a difference. Her message is stronger than ever. Eva's legacy will continue to inspire people to fight cystic fibrosis, create awareness for organ donation and remember that the most important thing in life is to love, love, love.

To donate to the important work of cystic fibrosis researchers in honor and celebration of Eva Markvoort, please visit https://cfvancouver.ca/donation_form-Eva.php.

Martina Meckova is director of Cystic Fibrosis Canada Vancouver/Lower Mainland Chapter

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Monday, March 21, 2011

New therapy found for rare lung disorder, lymphangioleiomyomatosis (LAM)

News Release University of Cincinnati Health Center

CINCINNATI—Researchers at the University of Cincinnati (UC) and Cincinnati Children's Hospital Medical Center have found that the FDA-approved drug sirolimus, used primarily to prevent rejection in organ transplant patients, stabilized lung function in women with lymphangioleiomyomatosis (LAM).

The Multicenter International LAM Efficacy of Sirolimus (MILES) trial was the first randomized, controlled study designed to develop a therapy for this life-threatening illness, which currently has no cure or treatment.

These results are being reported in the March 16, 2011, online edition of theNew England Journal of Medicine.

LAM is a progressive, cystic lung disease that occurs almost exclusively in women. In LAM, an unusual type of smooth muscle cell grows uncontrollably and spreads from an unknown source to restricted areas in the body, including the lungs, lymph nodes and vessels and kidneys, limiting the flow of air, blood and lymph.

Shortness of breath and recurrent lung collapse are common in patients with LAM, and until now, lung transplantation has been the only hope for patients who progress to respiratory failure.

"LAM affects about five people per million and occurs in 30 to 40 percent of women with tuberous sclerosis complex (TSC), a genetic disorder which also causes tumors to form in the kidneys, brain, heart and other organs," says Frank McCormack, MD, director of the pulmonary, critical care and sleep medicine division at UC and lead investigator on the study.

"Sirolimus, otherwise known as rapamycin, showed promise for patients with LAM in a pilot study conducted in Cincinnati and reported in the New England Journal of Medicine in 2008, but the relative risks and benefits of sirolimus for treatment of patients with this condition have remained unclear. In this international, multicenter study, we evaluated the safety and efficacy of one year of sirolimus in stabilizing and/or improving lung function in women with LAM."

McCormack says LAM cells isolated from lung lesions have TSC mutations and exhibit activation of a key sirolimus-sensitive growth pathway. When exposed to the drug in culture, the growth of LAM cells is stopped.

Experiments in TSC animal models have also demonstrated that sirolimus shrinks tumors in the liver and kidneys.

The MILES study was conducted within the National Institutes of Health (NIH)-supported Rare Lung Diseases Consortium, led by UC and Cincinnati Children's physician and pulmonary biologist Bruce Trapnell, MD, and co-directed by McCormack, and involved 13 institutions from around the world. Data was reported using Internet-based systems connected to a centralized, Internet-based data coordinating center headed by Jeffrey Krischer, MD, at the University of South Florida, Tampa.

"The trial included a screening visit and a year-long double blind, placebo-controlled treatment period, followed by a year of observation," says McCormack.

All eligible participants were female, aged 18 years or older and had a confirmed diagnosis of LAM with abnormal lung function.

Patients meeting the criteria were randomly assigned to either receive an initial dose of oral sirolimus at 2 milligrams per day or a matched placebo, and sirolimus levels were measured at each follow-up visit. Results were revealed only to an independent medical monitor who made dosing recommendations to maintain serum levels within a pre-specified target range.

A total of 89 patients with LAM were enrolled in the United States, Canada and Japan. Patients underwent baseline lung function testing, and lung function and exercise outcomes were measured over the course of six visits in the first year. Participants were also given questionnaires to determine how their symptoms changed throughout the course of the study.

Researchers found that sirolimus stabilized lung function and was associated with improvement in measures of functional performance and quality of life.

Sirolimus also reduced levels of serum vascular endothelial growth factor-D, or VEGF-D, a protein that is known to be elevated in LAM. VEGF-D promotes the growth of lymphatic vessels and can be involved in the spread of cancers.

"After discontinuation of sirolimus, lung function decline resumed and paralleled the placebo group," McCormack says. "Adverse events were more common with sirolimus, but the frequency of serious adverse events between the groups was not different."

McCormack says that these results suggest that sirolimus may be useful as therapy for moderately severe LAM-related lung disease.

"LAM is typically slowly progressive, and sirolimus therapy has risks, so treatment decisions should be individualized. Care must be taken in generalizing the results to those with milder or more severe lung disease due to LAM," he says. "Also, additional trials are needed to determine the optimal dose and duration of treatment with sirolimus. Given the toxicity profile of the drug during a one-year period, the long-term safety of this approach over an extended course must be carefully evaluated."

The trial involved efforts by the LAM Foundation that lobbied for the NIH's attention, organized and recruited patients and supported pivotal basic and clinical research that formed the scientific basis for the study.

###

This study was funded by the NIH Office of Rare Disease Research, the Food and Drug Administration, the LAM Foundation, the Japanese Ministry of Health, Labour and Welfare, the Canadian Institutes of Health Research, Cincinnati Children's, UC, the Tuberous Sclerosis Alliance and Vi and John Adler and the Adler Foundation.

Pfizer, maker of sirolimus, provided the drug and financial support but had no role in study design, conduct, analysis or reporting. McCormack cites no conflict of interest.

Regulatory oversight was provided by the National Center for Research Resources of the NIH. Participating centers included UC; Cincinnati Children's; the University of Toronto, Canada; the University of Texas Health Science Center at Tyler; the University of California at Los Angeles; Oregon Health and Science University, Portland; Niigata University Medical & Dental Hospital, Japan; National Hospital Organization Kinki-Chou Chest Medical Center, Osaka, Japan; the National Jewish Medical and Research Center, Denver; the National Heart, Lung, and Blood Institute, Bethesda; Medical University of South Carolina, Charleston; the Cleveland Clinic Foundation; and Brigham and Women's Hospital, Boston.


“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Friday, March 18, 2011

Lung recipient developed her donor’s allergy

In the months after her surgery, a Toronto patient suffered four anaphylactic attacks. Doctors were stumped because she had never had allergies.

Tom Blackwell, National Post

For a 47-year-old woman with dangerously scarred lung tissue, the double-lung transplant she underwent a couple of years ago was a life saver. It came, though, with an unwelcome bonus.

In the months after her surgery, the Toronto patient suffered four anaphylactic attacks, according to her doctors’ 2009 study of the case. Physicians were stumped by the mysterious affliction in a woman who had never experienced serious allergies before. Then they discovered that the 12-year-old boy whose lungs she received had himself suffered from an acute peanut sensitivity, while the woman’s anaphylactic shock had occurred after she ate foods that likely contained nut traces.

It appeared the young donor’s allergy had been passed on along with his organs.

“When it’s transplanted, everything in the organ is transplanted,” said Dr. Susan Tarlo, a University of Toronto asthma and allergy expert who treated the woman.

Now a string of such unusual cases has prompted medical experts to make plans to start screening potential organ and stem-cell donors for serious allergies - a piece of medical background they had never paid much heed to before.

Draft guidelines prepared at the request of Health Canada call for doctors to ask whether organ donors had a history of anaphylactic shock triggered by allergens like peanuts and shellfish, and whether cell donors have any kind of allergy.

In fact, the organs in such cases often become available when the donors die themselves from allergy-caused shock.

“The transplant recipient may be unaware of the risk for potentially life-threatening hypersensitivity reactions,” says a Health Canada document urging the change in protocol.

The guidelines being developed by expert committees of the Canadian Standards Association say allergic donors should not necessarily be excluded, but that doctors can suggest, at least, that recipients get allergy testing and, if necessary, make lifestyle changes to avoid specific allergens.

Doctors say the “intriguing” problem is described in the medical literature relatively rarely, though Health Canada has suggested it is likely under-reported.

There are reports, nonetheless, of transplant recipients developing allergies to various nuts, seafood, eggs, beans, bananas and avocado, as well as drugs like penicillin, substances like latex, plus dust mites and pet dander, according to Health Canada’s proposal to the CSA for new standards. The allergy can persist for at least 14 years, and symptoms have developed as early as eight days after the transplant.

In one case reported in 2008, a 42-year-old, allergy-free Detroit woman received two donor lungs from someone who had died of anaphylactic shock after eating peanuts. “Seven months later, she ate a peanut-butter cookie at a transplant support group meeting,” they recounted. “Immediately thereafter, she developed an anaphylactic reaction, but survived with prompt treatment.”

There is evidence that the process can work in reverse, as well. In one case, a young patient’s serious peanut allergy disappeared after a bone-marrow transplant from an allergy-free donor. Others have ceased being asthmatic.

Allergies occur when people develop so-called immunoglobulin E antibodies to the particular food or other substance, causing the body’s immune system to react against the allergen. Experts say it is likely that those antibodies are implanted in the transplant recipient, either on their own or on the surface of Mast cells, which release the histamine and other chemicals that contribute to the allergic reaction.

Dr. Tarlo reported on the case of the 47-year-old lung-transplant recipient, who eventually tested strongly positive for peanut allergy herself, according to the physician’s presentation to an American College of Chest Physicians conference. It was likely the cereal, coconut cream pie and chocolate she ate just before the reactions were contaminated with peanut, Dr. Tarlo and colleagues said.

The woman’s test results for peanut allergy gradually disappeared, likely because the transplanted cells carrying the antibodies had died, she said.

The CSA standards, which hospitals implement voluntarily, are likely to be published early in 2012, said Anthony Toderian, a spokesman for the non-profit organization.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Tuesday, March 15, 2011

U.K. Member of Parliament helping 66 year-old man denied lung transplant because of age

MP takes Bill Clark’s fight for lung transplant to the top

See my Previous post about Bill Clark, who has pulmonary fibrosis, being denied a lung transplant. Now it's great to see that others have taken up his fight.

The Bolton News

A BOLTON MP fighting to help a man who claims he has been handed a “death sentence” by a hospital has demanded a meeting with Health Secretary Andrew Lansley over the issue.

Bill Clark, aged 66, has been taken off the waiting list for a double lung transplant, claiming doctors told him he is too old for the operation.

Bosses at Wythenshawe Hospital have said they take a range of factors into account, including age, and he is no longer suitable.

Now Yasmin Qureshi, who represents the south east of the town, has taken up his case.

Ms Qureshi wrote to Mr Lansley highlighting Mr Clark’s case but is unhappy with the response she received.

A letter from minister Anne Milton explains there is an acute shortage of organs donated leading to difficult decisions.

It goes on to say this would be down to a multi-disciplinary team adding she is unable to comment or intervene in individual cases.

Ms Qureshi has replied asking to meet with Mr Lansley, saying: “I am afraid that I am not happy with the contents of this letter and I wish to speak to you in person about Mr Clark’s case.”

Her office is now waiting to hear when a meeting can be arranged.

Grandfather Mr Clark, of Duchy Avenue, Over Hulton, who is married to Barbara, said: “It was good to meet Ms Qureshi and I am pleased she is helping me.

“She is really having a go and I have my fingers crossed that if we keep going we will get a result. I feel more positive and hope to get back on the list. I would tell Andrew Lansley to get up-to-date with the times, people might be working until they are 70 or older but apparently 66 is too old for an operation.”

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Monday, March 14, 2011

Single mom with two young daughters needs financial help for lung transplant

Amy Jackson, 37, cuddles with daughters Fate, 10, and Holland, 4. A fundraising drive is now under way to help Jackson, who has cystic fibrosis, pay for a potentially lifesaving visit to the Mayo Clinic.

By Elane Dickenson Wallowa County Chieftain
Amy Jackson is in the fight of her life and needs all the help she can get.

The 37-year-old Enterprise woman was accepted by Mayo Clinic in Arizona for evaluation for their lung transplant program but has to have at least $8,000 in hand for her first appointment in April.

Family and friends have launched a fundraising effort, and hope the community will rally around Jackson in the next few weeks to help try to save her life.

The single mother of two young daughters, Jackson has been battling lung disease all of her life. She already lost most of one lung after a life-threatening emergency eight years ago.

Unfortunately, Jackson has been misdiagnosed since childhood. Despite a lifetime of doctors and serious health problems, she only found out after an emergency life-flight to Portland and an expensive blood test in November 2009 that the core disease she fights is cystic fibrosis.

Earlier “sweat tests” – a common diagnostic tool for the disease – were apparently negative, even one given at the time her lung was removed.

“It is mind-boggling,” said Amy’s older brother, Brian Jackson of Portland, about the misdiagnosis, which he said led to decades of lost time in properly treating the genetic disease. Instead, since age 2 she was treated for bronchiectasis – a very serious disease she does have. Bronchiectasis can be caused by cystic fibrosis.

He said that a double-lung transplant in the Mayo Clinic’s transplant program may be her best chance for a healthier future.

Jackson’s chronic health issues precluded private health insurance coverage, and while she is now covered by the Oregon Health Plan, Mayo Clinic does not accept state health coverage. Under a Catch-22 situation, federal Medicare coverage will not kick in for two years after her diagnosis of cystic fibrosis, even though she was born with the inherited disease.

“The average life expectancy for CF is 37 years. My daughter is 37 years old and needs your help,” said Amy’s mother, Evie Kralman of Gladstone, who owns a house with her husband, Larry, in Joseph.

With her daughter’s health deteriorating, she is afraid time is running out. “I hate to put it that way, but it’s the truth,” she said. “Amy’s not doing well, and we’re just counting the days until we can get her to the Mayo Clinic.” She said the immediate hope is that the clinic can stabilize her condition and improve her quality of life.

Her daughter has always “put her best face forward” and many people have had no idea how sick she is. “She never wanted people to feel sorry for her,” Kralman said.

However, now with the need so great, she said there’s no choice but to make her daughter’s story public.

“She needs help,” Kralman said, adding that her first week at the Mayo Clinic will cost from $8,000 to $10,000, the immediate fundraising goal.

Jackson’s two daughters are Fate, 10, and Holland, 4, and are very much aware of their mother’s fragile health.

“They’ve grown up knowing. How could they not, when she’s been in and out of the hospital as many as 10 times a year.”

At present Jackson’s youngest sister, Caelyn, is staying with her in Enterprise to help out, as she awaits the Mayo Clinic appointment.

“We don’t know what they will choose to do there, but just hope they can find solutions,” said Kralman.

Jackson grew up in the Portland area in a family of five children, graduating from Estacada High School and earning a degree from Oregon State University. She moved to Wallowa County seven years, in part because of the high elevation and clear air.

“She loves Wallowa County. That’s where she wants to live,” Kralman said.

For several years Jackson worked as a mortgage broker at Whitehouse Financial in Enterprise.

“She’s an amazing mother, a very kind, generous person. She’s very courageous to keep fighting as long as she has,” said Brian Jackson of his 18-month-younger sister. “To me, she’s my best friend.”

In addition to a place to stay and plane fare to Arizona, so far about $2,000 has been donated to help Amy Jackson receive the care family members say she desperately needs.

Special T-shirts, with angel wings on the back, will go on sale for $15 each – at Bee Charmed Marketplace in Enterprise, Salon Joseph in Joseph and other locations – as one fundraising project.

An Amy Jackson Lung Fund (account 9700104547) has been set up at Sterling Bank (P.O. Box G, Enterprise OR 97828), and donation cans have been placed in several businesses. Gardeners who want to help are invited to buy gardening products online, www.flowerpowerfundraising.com/campaign?campaign_id=4935; half the price goes into Jackson’s fund.

A local fundraising breakfast is also in the planning stages.

For more information, call Evie Kralman at 503-319-8322.

“She’s my hero,” said the very concerned mother about a daughter who never stops fighting, and who recently told her mom, “If I get a new lung, the first thing I’m going to do is run marathon. … If you can breathe, why wouldn’t you run?”

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Thursday, March 10, 2011

Celebrating the 30-year anniversary of the world's first lung-heart transplant

Today, we take a moment to reflect on an important milestone in modern medicine. On this date thirty years ago, Stanford surgeon Bruce Reitz, MD, and the late Norman Shumway, MD, PhD, performed the world's first successful combined heart-lung transplant.

During the four-hour operation, the heart and lungs of an anonymous donor were implanted into the chest of a Mary Gohlke, a 45-year-old newspaper executive from Mesa, Arizona. This was made possible by the use of the immunosuppressive drug cyclosporine, and previous laboratory research performed at Stanford.

In the past three decades, more than 150 patients have received a heart-lung transplant and more than 120 patients have received either a single-lung or double-lung transplant at Stanford.

Source: Lia Steakley SCOPE (Stanford News)

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Wednesday, March 09, 2011

Where you live drives wait for liver transplants

Lack of donor livers in the U.S. causes fights over livers that are there

By Lauran Neergaard newstimes.com
Doctors dropped another bomb soon after telling Matthew Rosiello it was time for a liver transplant: The 21-year-old isn't likely to get one any time soon in his home state of New York. Consider traveling to Ohio, they advised, where the wait's a lot shorter.

Where you live plays a big role in how sick you are, and how long you wait, before getting a scarce liver transplant -- if you survive long enough. Now the network that runs the U.S. organ transplant system is exploring steps to ease some of the disparities. Critics who want more nationwide sharing of donated livers fear any changes won't help enough.

"I'll go anywhere for my son. This is his life," says Matthew's mother, Randy Rosiello of New York City, who has begun researching waiting lists from Ohio to North Carolina as the family debates its next step.

But she doesn't think her son should have to leave his doctors at New York's Mount Sinai Medical Center, or undergo the stress of travel. Plus, she worries, "if I have to go, I'm putting my family into financial ruin." The nation has a severe shortage of donated livers. More than 16,000 people are awaiting a liver transplant, and just 6,300 a year get one. More than 1,400 others die waiting each year.

Since 2002, the sickest patients have been ranked atop waiting lists to receive a liver from a deceased donor. They're given a so-called MELD score, based on laboratory tests, that predicts their risk of death. Rising scores move them up on the waiting list. The change by all accounts has greatly improved the system, which once was based instead on time spent waiting.

Here's the lingering trouble: Patients with liver failure and would-be donors are not distributed evenly around the country. And the nation is divided into 11 transplant regions that have wide variations in patients and available organs, between regions and within them.

A donated liver is offered first to the sickest patients in the local transplant center, and if there's no good match, then to the sickest patients throughout that transplant region. If there's still no good match, the liver can go to someone who's not as sick -- rather than to someone sicker in the next transplant region.

Patients can shop around for shorter lines, even get on more than one list, if they have the means to get to a far-away hospital within hours of a liver becoming available. For instance, Apple CEO Steve Jobs' 2009 liver transplant was in Tennessee, where the wait was much shorter than back home in California.

But Mount Sinai liver transplant chief Dr. Sander Florman says that system isn't fair to those who can't afford to maximize their chances.

"If a patient can get on an airplane and go to Florida, why can't the liver get on an airplane and come to New York?" he asks.

For patients like Matthew Rosiello, the news that New Yorkers wait longer for a liver complicates already agonizing treatment choices.

When he was a baby, Rosiello had complex liver surgery for a rare birth defect, biliary atresia, and more surgery a few years ago that postponed a transplant. But now repeated liver infections and other complications have put him in the hospital three times in about a month, require IV care and forced him to quit college. Still, his MELD score is low, something doctors warn could change rapidly -- but that also means he should consider a place with a shorter wait.

"He's frightened to death," says Randy Rosiello as the family peruses an Internet database -- the Scientific Registry of Transplant Recipients -- that compares wait times and success rates.

How big are the differences? The United Network for Organ Sharing says that in three regions stretching from Ohio down through Tennessee and on to Florida, adults receiving new livers in the past year had median MELD scores of 23 to 24. But in the New York and western Vermont region, liver recipients were far sicker, with a median score of 32. Only the region that includes California fared worse, with 37.

Within regions, rates of people who die on the waiting list or become too sick to transplant range from fewer than 10 percent to more than 25 percent each year.

So UNOS' liver committee is seeking feedback from transplant centers about options to improve, in hopes of proposing changes later this year.

Topping the list: If a liver isn't a good match to the sickest patients within one region -- as measured by a MELD of 15 or more -- offer it nationwide before giving it to a less sick local patient.

But small steps won't help the toughest regions, contends Mount Sinai's Florman.

New York transplant centers suggest splitting the country into four or five "super regions" where the sickest patients in the zone would get first dibs.

No, livers don't last outside the body as long as kidneys that often are shipped long distances. But Florman says his hospital successfully flies in livers from Florida that hospitals there turn down as less-than-optimal -- because, say, the donor was elderly -- meaning better organs should have no problem.

And often less-than-optimal organs go to waste, because of restrictions on when hospitals can take a chance with them, adds Dr. Thomas Fishbein of Georgetown University Hospital in Washington, D.C., another hard-hit area.

Bigger moves would encounter more resistance, cautions Dr. Kenneth Washburn of the University of Texas Health Science Center, who chairs UNOS' liver committee and views modest change as an important first step. A proposal for regional sharing that skipped the local transplant center prompted "a lightning rod" of objections from hospitals that stood to lose organs, he says.

Indeed, centers with shorter waits say they do a good job of encouraging organ donations and other regions should try to improve.

"If you equate it to hunger, people try to figure out how to come up with more food, not which kid gets the sandwich," says Dr. Joseph Tector, transplant chief at Indiana University Health.

While short-term relief is needed, more organ donation is the long-term answer, agrees Georgetown's Fishbein: "It's only because we're so short of livers that we fight over the livers that are there."

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Monday, March 07, 2011

Regular exercise increases life span in kidney transplant patients

Although the focus here is on renal/kidney transplants, regular daily exercise is important for all organ recipients. What I found interesting is that a daily exercise regimen gave a 60 percent chance of living five years more than those who exercised at recommended daily levels.

By Anter Prakash Singh the medGuru

A group of researchers from the Netherlands have found in a recent study that patients who maintained a regular exercise regimen, had 60 percent increased chances of living five years more than those whose activity level was equal to or less than the recommended daily activity level.

The research is published in the online edition of the 'Clinical Journal of the American Society of Nephrology.'

Study by Dutch researchers
The study was conducted by Dr. Dorien M. Zelle and colleagues from the University Medical Centre, Groningen, the Netherlands.

Zelle explained that it is widely recognized that exercise has a beneficial impact on the heart of ordinary people, those with a renal transplant may form a group which requires exercise particularly more.

Patients with renal transplant are at a four to six times higher risk of dying due to heart disease as compared to the general population.

The study could not explain the link between exercise and increased longevity because those who exercise regularly also lead a healthier life style.

Some of the earlier studies have also shown that kidney transplant patients tend to gain weight after the operation and the level of physical activity decreases as compared to healthy adults.

The muscle wasting that occurs at the advanced stage of the renal diseases and the immunosuppressive routine might contribute to the problem. It is also coupled with traditional risk factors like obesity and hypertension.

The study researchers examined 540 patients who had underwent renal transplant, and were required to fill the detailed questionnaires about their work and leisure activities during their outpatient visits to a single centre between 2001 and 2003.

Study explores the link
Nearly half the patients were found to be not getting enough exercise in accordance with the European guidelines which recommend at least 30 minutes exercise of moderate intensity for five days in a week.

The researchers found that mortality rate was appreciably lower in the group which was having more physical activity.

The link was slightly affected by other factors like age, gender, smoking, sugar levels, history of cardiovascular disease, and components of metabolic syndrome.

But apart from these factors, others like renal function and muscle mass plus other measures did not affected significantly the risk ratio, said the researchers.

While acknowledging the limitations of the study, the researchers said they have relied on self reported levels of exercise which could be affected by erroneous recall and social attraction bias.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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

Friday, March 04, 2011

Living With Kidney/Renal Failure

Those who are on dialysis as a result of renal/kidney failure have to be prepared and find the strength to undergo treatment about three days a week for about three to four hours.

Keva Poitier, a beautician who was diagnosed eight years ago with a kidney disease known as Focal Segmental Glomerulosclerosis (FSGS) is one such person.

She has to undergo haemodialysis three times a week for four hours.

Both of her kidneys have been affected and there is no known cause or cure for her particular form of renal failure.

However, Chronic Kidney Disease (CKD) is usually a debilitating illness associated with increased morbidity, premature mortality, decreased quality of life, and increased healthcare expenditures.

If left undetected and untreated or if inappropriately managed, it can result in Established Renal Failure, necessitating renal replacement therapy, such as dialysis or kidney transplantation.

Risk factors for kidney disease include cardiovascular disease, diabetes, hypertension and obesity, which are all commonly seen within The Bahamas.

Ms. Poitier did not have any of those factors, which is why there is no known cause for her disease.

She explained that FSGS is a disease where the kidney function degenerates to the point where an individual loses the ability to filter out the waste from blood and also to regulate the hormonal part the kidneys play in the endocrine system.

“It is a disease that is seldom detected until you are into kidney failure. When I found out I had the disease, I had less than 25 per cent of my kidneys functioning,” Ms Poitier said.

“So consequently, I spent the next five years pursuing various treatments to try and stay the disease. Even with that small function, the body is still fantastic, you could live without having to go on dialysis.”

However, she said none of the treatments brought about positive results. “I pursued treatments with the Miami Kidney Group, I went to Cuba, I did treatments here, I did the natural thing; I did everything you could think of.”

Unfortunately, this type of disease is not eligible for a transplant, as FSGS has a high rate of re-infecting the transplanted kidneys, Ms. Poitier said.

As a result, she has been on dialysis for three and a half years. At first Ms. Poitier was on Continuous Ambulatory Peritoneal Dialysis, which she did daily at home four times a day.

She had to switch over to haemodialysis after she got an infection earlier this year. Ms Poitier now has to get up at 3:15 a.m. to be at the hospital for 4:00 a.m. to sit on the machine for four hours in hopes of feeling well enough to go to work.

With haemodialysis, travelling becomes highly restrictive, and that is something Ms. Poitier has to deal with, as she loves to be on the move.

However, there are some positive stories of persons who have survived kidney/renal disease.

Nicholas Hepburn, production manager, Broadcasting Corporation of The Bahamas was on haemodialysis for 13 years before he received a transplant. He was on the waiting list in New Orleans for about five years.

He ended up having to go on dialysis as a result of hypertension.

Mr. Hepburn first got diagnosed when he was about 19 at university in the United States.

He went on to lose a lot of weight with eating right and exercising and was able to come off medication.

“When I returned home, I got back into not disciplining myself and put back on the weight,” Mr. Hepburn said.

As a result, he ended up with renal/kidney failure and damage to his heart.

“All it boiled down to was knowledge. I believe if you have knowledge and understanding about what is going to happen, then only a fool will get back into it.”

Now he takes his medication on time every day at the same time, because he knows the effects of being on dialysis.

“Sometimes after dialysis, you feel like your head is spinning, you have nausea, your pressure drops really low; sometimes you have to lay down a bit and catch yourself. You also feel drowsy; every now and then you can experience vomiting.”

He added, “Dialysis is something you have to accept. I have found that a patient who does not accept, is a patient who normally does not survive.”

“You have to accept dialysis and this is the way you have to live, your lifestyle is going to change. You cannot jump on a plane and go away everyday or every weekend or once a month.”

He said there are about eight medications to take; you must get up and go on the machine any time of day, and whatever you have to do, you must put that aside and get your dialysis treatment.

“If you do not, you are taking the risk of your blood getting contaminated and you could possibly die or face other health problems.”

Source: The Bahama Journal

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today!
For other Canadian provinces click here
In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

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