Monday, May 27, 2013

Benefits stopped - Heart/Lung transplant transplant patient dies


It is a sad state of affairs when an assessor working for a government bureaucracy or a health insurance company has the power to decide if a patient is well enough to return to work and deny benefits that could make the difference between life and death for patients like Linda Wooton. Merv.
The Atos criteria for ability to work included “You can understand simple messages from a stranger” and “You can use a computer keyboard or mouse and a pen or a pencil with at least one hand.”

By Ben Glaze, Mirror Co.

Linda Wootton: Double heart and lung transplant dies nine days after she has benefits stopped


 She was told her employment and support allowance was being stopped as she lay dying in a hospital bed



Dying transplant patient: Linda


A double heart and lung transplant patient died just NINE DAYS after the Government stopped her benefits and ordered her to go back to work.

Linda Wootton, 49, was on 10 prescription drugs a day, suffering high blood pressure, renal failure and regular blackouts.
Yet Atos – the private firm carrying out the Government’s controversial work capability assessments – ruled she was fit enough to find a job after she was interviewed.
Cost-cutting officials sent Linda a letter telling her that her £108.05 a week employment and support allowance was being stopped as she lay dying in a hospital bed.
Her husband Peter said: “I sat there and listened to my wife drown in her own body fluids. It took half an hour for her to die – and that’s a woman who’s ‘fit for work’. The last months of her life were a misery because she worried about her benefits, feeling useless, like a scrounger.
“But there was no way in a million years she could work.”
The Coalition hired Atos to carry out the assessments as part of the welfare cuts. The firm processed almost 20,000 incapacity benefit claimants a week last year... but a third of the people who appealed against its decisions were successful.
Linda also appealed but was rejected despite her history.
She had her first heart and lung transplant in 1985 and ­returned to her council office job. But her body began to reject her new organs and she had another transplant at Harefield Hospital, Middlesex, in 1989.
There were complications and she was given 80 pints of blood in 31 hours of surgery. Afterwards, Linda was never fit enough to go back to work and claimed benefits. Refrigeration engineer Peter, 50, said: “She would be listless, falling asleep, feeling faint... she had no stamina.”
She collapsed regularly and was in and out of the Harefield specialist heart and lung centre.
Then, three months ago, her employment support allowance was withdrawn under the Govern­ment’s cuts. New rules meant she would have to prove she was ill to Atos assessors.
Peter said Linda found the process humiliating. The assessments, which have also seen some terminal cancer patients denied benefits, have been blasted as arduous and degrading.
Linda’s was at a test centre in Southend, eight miles from her home in Rayleigh, Essex, on January 3. “She couldn’t even drive herself because she kept feeling faint,” said Peter, who was not allowed in to support her.
Linda spent just 20 minutes answering questions before the assessor ended the interview.
 
She was judged fit for work and her benefit was stopped on February 13. Peter said Linda typed her appeal on an iPad “crying her eyes out” as she lay in hospital chronically ill with a chest infection.
But the Department for Work and Pensions rejected it – and wrote to her on April 16 as she lay dying.  The letter said: “We have decided that you are not entitled to Employment and Support Allowance because you have been found to be capable of work following your recent Work Capability Assessment.”
Linda was told she would have to “score” at least 15 points from the assessment but her results were nil.
The Atos criteria for ability to work included “You can understand simple messages from a stranger” and “You can use a computer keyboard or mouse and a pen or a pencil with at least one hand.”
On April 22 Peter was called to Harefield. “I was told Linda’s condition was unsurvivable and she would be dead within two or three weeks,” he said.
“On April 24 they put her on palliative care. I sat all night with her and her breathing changed next morning.” Linda died 30 minutes later. More than 100 mourners attended her funeral earlier this month.
While the Atos assessment failed to pinpoint any of Linda’s health issues, her death certificate listed lung and heart problems, hypertension and chronic renal failure as causes.
Peter cannot grieve properly because he is so angry at how Whitehall bureaucrats ruined his wife’s precious last days. He said: “She paid her tax and national insurance – then she is treated like this. It’s disgusting.”
A Department for Work and Pensions spokesman said: “Our sympathy goes out to Mrs Wootton’s family.  A decision on whether someone is well enough to work is taken following a thorough assessment and after consideration of all supporting medical evidence.”




Saturday, May 25, 2013

Friday, May 24, 2013

Cheryl McEwen awarded for contributions to scientific research

I'm very pleased to post the following announcement about Cheryl McEwen who received the prestigious Queen Elizabeth II Diamond Jubilee Award for her contributions to advance stem cell research. 

Cheryl and husband Rob McEwen established the McEwen Centre for Regenerative Medicine at University Health Network in Toronto and already the research has produced amazing results.

An example is the Toronto ExVivo Lung Perfusion System that re-conditions and repairs donated lungs that have to be discarded because they are not good enough for transplant but now can be made suitable for patients. Currently only 15% of donor lungs are suitable for transplantation.

The five-year survival rate of patients who have lung transplants is approximately 50%, significantly worse than the survival rates for heart, liver, or kidney transplants. Research in regenerative medicine at UHN is starting to produce results that are having a global impact on saving lives. As a lung transplant survivor of 11 years this research is of great importance to me and all transplant patients.

I had the pleasure of meeting Cheryl and Rob McEwen and was greatly impressed with their passion for improving and saving lives through scientific research.   



Congratulations to Board Member Cheryl McEwen who received the prestigious Queen Elizabeth II Diamond Jubilee Award for her contributions to advance stem cell research.

In recognition of her extraordinary efforts over the past 10 years in support of regenerative medicine research, Cheryl McEwen was honoured with the presentation of a Queen Elizabeth II Diamond Jubilee Medal.

"Cheryl has devoted a great deal of her personal time to the cause of regenerative medicine, " said Michael Burns, the co-founder and Vice-Chair of the True Patriot Love Foundation upon presentation of the medal. "She has mobilized tremendous effort and resources to advance this area of medical discovery."
In 2003 Rob and Cheryl McEwen established the McEwen Centre for Regenerative Medicine at University Health Network. Since that time they have contributed approximately $25 million in support of Regenerative Medicine at UHN.

Created in 2012 to mark the 60th anniversary of Her Majesty Queen Elizabeth II's accession to the Throne as Queen of Canada, the Queen Elizabeth II Diamond Jubilee Medal serves to honor significant contributions and achievements by 60,000 deserving Canadians.

For more information, please visit: http://www.mcewencentre.com/home/
Congratulations to Board Member Cheryl McEwen who received the prestigious Queen Elizabeth II Diamond Jubilee Award for her contributions to advance stem cell research.

In recognition of her extraordinary efforts over the past 10 years in support of regenerative medicine research, Cheryl McEwen was honoured with the presentation of a Queen Elizabeth II Diamond Jubilee Medal.

"Cheryl has devoted a great deal of her personal time to the cause of regenerative medicine, " said Michael Burns, the co-founder and Vice-Chair of the True Patriot Love Foundation upon presentation of the medal. "She has mobilized tremendous effort and resources to advance this area of medical discovery."

In 2003 Rob and Cheryl McEwen established the McEwen Centre for Regenerative Medicine at University Health Network. Since that time they have contributed approximately $25 million in support of Regenerative Medicine at UHN. 

Created in 2012 to mark the 60th anniversary of Her Majesty Queen Elizabeth II's accession to the Throne as Queen of Canada, the Queen Elizabeth II Diamond Jubilee Medal serves to honour significant contributions and achievements by 60,000 deserving Canadians.

For more information, please visit: http://www.mcewencentre.com/home/



Cheryl McEwen with Michael Burns

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Wednesday, May 22, 2013

Cystic Fibrosis film on line 6-22-13 to 6-30-13


Film about twin sisters’ double lung transplants and battle against cystic fibrosis available online



“The Power of Two,” a documentary offering an intimate look at the lives of twin sisters Anabel Stenzel and Isabel Stenzel Byrnes and their battle with cystic fibrosis, will be available on the web for viewers in the United States June 22 through June 30.

After undergoing aggressive treatments during childhood, the siblings graduated from Stanford in 1994 and completed their graduate degrees at University of California-Berkeley. They received three sets of transplant lungs between them and co-wrote amemoir chronicling their transformation from illness to wellness made possible by organ donors. Their miraculous story inspired the award-winning film. Today, the pair work at Stanford’s Lucile Packard Children’s Hospital.

The documentary is being streamed online in recognition of Cystic Fibrosis Awareness Month and to raise awareness for organ donation and transplantation.


Starting tonight May 21 at 8 pm,m. Pacific/Eastern, watch the KCETLink special presentation of "The Power Of Two" on TV and online across the U.S.!

Here's where you can see the film:
The film will air through June 30 so, if you can't see it tonight, don't worry! Click here for dates/times, exclusive clips, blog posts, and resources about organ donation and cystic fibrosis. 

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

Friday, May 17, 2013

Fundraiser for Oregon man needing kidney/pancreas transplant


‘A longer, healthier life’ 

Fundraiser to help man with diabetes who is seeking kidney-pancreas transplant
LEBANON — Micah Evans was 6 years old when he got a flu that wouldn’t go away.
His illness progressed to the point where he had to be hospitalized. It took two months to fully recover, and by then, his pancreas was so damaged it could no longer produce insulin.
That led to Type I diabetes, which Evans has battled for 31 years. He went into full renal failure two years ago and is now seeking a kidney and pancreas transplant through Oregon Health & Science University in Portland.
The Lebanon man has insurance to cover the costs of the actual transplant. But he said he’ll need roughly $15,000 for the three-month post-operation stay in Portland, some of the post-operation medications he’ll need, and help for he and his wife to care for their three young sons while he recovers.
Family members and friends have organized a multifamily yard sale this weekend in Millersburg to help out. They’ve also set up an account at US Bank, a Facebook page and a fundraiser May 24-26 at Panda Express. More efforts are in the works.
The yard sale will be from 9 a.m. to 5 p.m. Friday, Saturday and Sunday at 2257 Alexander Lane. That’s the home of Dion and Stephanie Evans, Evans’ brother and sister-in-law.
Evans grew up in Lacomb, where his parents still live. He graduated in 1994 from Lebanon High School and said he’s been very grateful for all the assistance from his family and the community thus far.
Diabetes caused Evans two retinal detachments, compromising his vision and leading to the loss of his job at Rent A Center in 2009. It also causes extreme fatigue.
“It’s hard to get around just because of that fatigue, you know?” Evans said. “You’re able to do stuff, but you take a lot of breaks.”
A musician, Evans has uploaded a few songs about his situation on YouTube. They can be found under the title “Micah Evans Music.”
Currently, he spends four hours, three times a week, on dialysis, but the machine isn’t a substitute for a working kidney.
“There’s things it misses when it does its cleaning job,” he said. “The doctors at OHSU thought I would be a good candidate for a double transplant (kidney and pancreas), because it’ll give the kidney a better lifespan, they believe.”
Evans and his wife of 16 years, Miranda, have three boys: Brayden, 10, Silas, 7, and Cohen, 4. Miranda recently lost her job as a certified nursing assistant.
“The dream of having a life-saving double transplant means everything to me. It means a longer, healthier life with my family,” Evans wrote on the website established to raise money for his transplant costs. “This necessary procedure will not only transform my life, but also the life of my family.”
More information about Evans, his condition and various fundraisers is available on his website,www.metfd.org, and on Facebook at www.Facebook.com/MicahEvansTransplantFund.
TRANSPLANT CANDIDACY
An organ transplant candidate’s ability to live in Portland for three months following the procedure is just one of numerous factors affecting candidacy.
The location question is important because numerous medical followups are needed in the weeks following surgery to make sure the recipient isn’t rejecting the new organ, said Mike Seely, executive director of transplant services at Oregon Health & Science University.
However, Seely said, potential organ recipients also are assessed in many other ways to ensure “proper stewardship” of the gift. Doctors ask, for instance, if the patient will take the proper medication and refrain from activities that could compromise the transplant.
Donated organs, he said, are “a precious resource, which we don’t have enough of.”
That said, waiting times for transplants in the Pacific Northwest generally are pretty good, compared with the rest of the nation, Seely said. Residents of Oregon, Washington, Alaska, Idaho and Montana are more likely than folks in the rest of the country to agree to be donors.
Seely did not immediately have average wait times for a kidney-pancreas transplant, such as Lebanon resident Micah Evans needs. Blood types and the health factors of both the donor and the recipient all affect the process.
The hospital performed eight such transplants in 2011, with a survival rate of 100 percent.
“It’s so important to get the message out: There are not enough donors. Eighteen people die in the United States every day waiting for some type of organ transplant,” Seely said. “The graciousness of someone else is the key to this person’s health.”

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Monday, May 13, 2013

Hundreds walk/run for 15-year-old Kayla



Five weeks after a single lung transplant, Kayla Baker rolled through the halls of Toronto’s Sick Kids Hospital Saturday as hundreds walked or ran along the Bob McMullen Trail in Cambridge for the inaugural Run aLung 3 to 5 km Walk/Run.

The goal of the event is to raise $50,000 for the rehab center at Sick Kids and also awareness about organ donations.

Many of those walking and running Saturday have a connection with the 15-year-old and her family.
“Kayla goes to school with my daughter at St. Benedict’s.” Tammy Fundak says.

Family friend Trish Main calls Kayla’s a fighter.
“She’s done a lot for a lot of people, it doesn’t take much to do a little something for her and make her dream come true.” Main says.

Kayla’s father Frank says she feels the support from all those cheering her on.

“When she’s not feeling well, I’ll read the posts that are on ‘New Lungs for Kayla’ on Facebook and I think a lot of that really helps her manage each day.” Baker says.

Kayla was diagnosed with Pulmonary Fibrosis, a rare lung disease at the age of 11.  This disease is the consequence of chemotherapy she received when she battled cancer, starting at the age of 18 months.  She spent two years on a waiting list for new lungs with an oxygen tank attached to her.

This past April, the City of Cambridge went green in support of Kayla as she recovered from a lung transplant.  From lamp posts, to benches, to trees, everything was covered with a green bow.

Read more & view video: CTV, Kitchener, ON, Canada



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Thursday, May 09, 2013

IABC Names Hélène Campbell Communicator of the Year

Congratulations to Hélène Campbell for receiving this prestigious honor from The International Association of Business Communicators In Ottawa, Canada. Her efforts to increase awareness for organ and tissue donation have had a global impact in a very short time and she has now launched her Give2Live Campaign, which exists to support organ recipients and their families through Transplant Patient & Family Support Fund at the Toronto General Hospital.

Photo Credit: MIchelle Valberg
Photo Credit: MIchelle Valberg
Hélène Campbell, Ottawa’s advocate for organ donations and founder of the Give2Live campaign, has been selected as the recipient of the prestigious Communicator of the Year Award.
“The Communicator of the Year Award is essentially about using communications effectively to make an impact,” said Kelly Rusk, president of IABC Ottawa, who nominated Hélène for the award. “Hélène has demonstrated that a combination of passion, determination and the savvy use of new communications channels can be harnessed to make a difference in the world. She has effectively changed the conversation and put organ donation front of mind for many.”
The IABC Ottawa board chose to honor Hélène not only for her tremendous efforts with her online campaign #BeAnOrganDonor, but specifically because she was able to harness her fame into her latest initiative, the Give2Live Campaign, which exists to support organ recipients and their families through Transplant Patient & Family Support Fund at the Toronto General Hospital.
“I am honored to be the recipient of this year’s IABC Ottawa Communicator of the Year Award,” says Campbell, “Kindness without expectations of return is the ultimate gift of love.”
Please join us in recognizing Hélène at the IABC Ottawa 2013 Excel Award Celebration on Thursday, May 16, 2013.
Who is Hélène Campbell?
Hélène was the recipient of a double lung transplant at the age of 21. She used her experiences to share her story on Twitter and start the online campaign #BeAnOrganDonor, which garnered attention from Canadian popstar Justin Bieber and The Ellen Degeneres show. Campbell garnered attention from local and national media, local and national politicians and even Canada’s Prime Minister Stephen Harper who presented her with a Queen Elizabeth II Diamond Jubilee Medal.

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Thursday, April 25, 2013

Canadian Government supports National Transplant Research Program


New program to enhance the survival and quality of life of Canadians needing organ and tissue transplants

Ottawa, ON  — Canadian transplant patients have new hope as the Government today announced the launch of a new national transplantation research program that will develop new knowledge and health care practices that address barriers to tissue and organ donation and will improve health outcomes for transplant recipients in Canada. The Honorable Leona Aglukkaq, Minister of Health made the announcement at the Ottawa Hospital Research Institute. The Minister was joined by Dr. Lori West, Director of the new Canadian National Transplant Research Program (CNTRP), and Hélène Campbell, a double lung transplant recipient and co-founder of the Give 2 Live Campaign.

"Our Government recognized the need for a national program to help Canadians who have received or who are waiting for tissue and organ transplants," said Minister Aglukkaq. "That is why we committed to fund this research program and we are delivering on this commitment to Canadians. This program will provide important information to guide the development of policies and programs that increase tissue and organ donation in Canada and enhance the survival and quality of life of Canadians who receive transplants."

The CNTRP brings together over 105 investigators across 9 provinces. The program will transform the field of transplantation by addressing the barriers to donation therefore increasing the number of available organs, improving the quality and viability of donated organs and grafts, and enhancing long-term survival and quality of life of transplant patients. The CNTRP is the first program in the world to unite and integrate the solid organ transplant, bone marrow transplant and the donation and critical care research communities together in a groundbreaking national research endeavour.

"The transplant and donation communities across Canada have come together to create a truly unique collective research program that will foster innovation, creativity and collaboration in new ways that will increase our ultimate effectiveness" said Dr. Lori West, Director of the CNTRP and Professor of Pediatrics, Surgery and Immunology at the University of Alberta. "This integration will improve donation and transplant programs across the country and will impact the lives of transplant patients and those awaiting transplant".

"Canadian transplant centers and organizations are working together, for patients like me", said Hélène Campbell, double-lung transplant recipient and organ donation advocate. "The results of this program will be groundbreaking for all patients".

Funding for this program is being provided through the Canadian Institutes of Health Research (CIHR) in partnership with Canadian Blood Services, Canadian Liver Foundation, Cystic Fibrosis Canada, Fonds de recherche du Québec – Santé, Genome British Columbia, and the Kidney Foundation of Canada.

The Canadian Government remains focused on four priorities, as outlined by Prime Minister Harper, that Canadians care most about: their families, the safety of our streets and communities, their pride in being a citizen of this country, and of course, their personal financial security.

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

Wednesday, April 17, 2013

Give the gift of life — Facts on organ donation


April is National Donate Life Month, an opportunity to renew the commitment to save lives through organ and tissue donation. Kentucky Organ Donor Affiliates (KODA), the Kentucky Circuit Court Clerk Association, and many Kentucky hospitals are hosting events to recognize the importance of donation.
Though nearly 1.3 million Kentucky residents over 18 have joined the Kentucky Organ Donor Registry, we can do better. The need for organ and tissue donors is on the rise and is a public health crisis.
How many people are waiting for an organ transplant?
More than 117,000 people nationally, including more than 919 in Kentucky, are currently waiting for an organ transplant. About 134 people are added to the waiting list each day — one every 10 minutes.
Although approximately 77 organ transplants take place every day, on average, 18 patients die each day while waiting because the organ they needed did not become available in time.
At UK HealthCare, 155 patients received organ transplants in 2012, with many of these patients receiving multiple organs.
What is the difference between organ and tissue donation?
Organ donation involves the transplantation of solid organs, such as the heart, lungs, kidneys, liver and pancreas. However, tissue donation is also extremely important. More than 1 million tissue transplants are done nationally each year, and the surgical need for tissue has been steadily rising.
Examples of tissue that can be donated include skin, bone, heart valves, blood vessels, and even corneas. These donated tissues can make a huge difference in the quality of life for many patients.
What is "living donation"?
While most donations will take place after the donor is deceased, it is possible for a living person to donate some organs or tissues. The most common is living kidney donation — because humans have two kidneys, it is possible for a person to donate one kidney. Additionally, lobes of the liver or lungs can be given by a living donor. Tissues that can be donated by a living donor include skin, bone marrow and blood stem cells.
Most living donations take place between family or close friends, but sometimes they do take place between complete strangers.
How can I become an organ donor?
The best way to become an organ donor is to join the Organ Donor Registry. You can do this at the DMV when you renew your driver's license, or join online anytime at Donatelifeky.org.
A single donor can save or improve the lives of more than 50 people through organ and tissue donation. It only takes minutes to join the registry, and your decision could give the gift of life to a patient in dire need.
UK HealthCare and KODA will celebrate this month with an exhibit from 5-8 p.m. on April 19 at Lexington Central Library during the Gallery Hop. The exhibit features life-size canvases created by eight UK transplant recipients that showcase their journey and honor their donors.
Dr. Andrew Bernard is the chair of the Organ Donation and Transplantation Action Council at UK Healthcare.
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Read more here: http://www.kentucky.com/2013/04/07/2590235/give-the-gift-of-life-facts-on.html#storylink=cpy

Friday, April 05, 2013

Fundraiser for double-lung transplant expenses


Dinner and auction in honor of double-lung transplant patient scheduled

Karen Gearheart is awaiting a lifesaving double-lung transplant, and the costs are overwhelming.
Gearheart, 54, has faced health problems since age 1, when she was diagnosed with asthma, which has also afflicted her father, brother and three children. She was diagnosed with emphysema in 2004, and she learned she was also suffering from chronic obstructive pulmonary disease (COPD) shortly thereafter. In 2011, she underwent a tracheotomy, and she relies on an oxygen tank 24 hours a day and a ventilator to sleep.


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

A double-lung transplant costs approximately $800,000. Even with health coverage, she faces significant expenses. She will need follow-up care and daily anti-rejection medications for the rest of her life. Post-transplant medications are very costly, and they are as critical to her survival as the transplant itself.

“Can you imagine literally struggling for every breath?” said Claire Prince, NFT fundraising consultant. “It breaks my heart to think about it, but that’s the reality for Karen. At NFT, we’re dedicated to helping these volunteers raise the necessary funds so Karen can focus on her health without constantly worrying about the medical expenses.”
On Saturday, April 13 at noon, volunteers are holding “Karing for Karen,” a barbecue dinner and silent auction in Gearheart’s honor.
The event will be held at Scooter’s Ice House, 1134 N. Main St. in Pearland. Barbecue plates will cost $8 and include sausage, beans, potato salad and bread.
Raffle tickets will be sold for $10 apiece, and the winner will receive a barbecue pit valued at $300. A silent auction will include more than 40 items valued between $25 and $450. A DJ with Bayou City Entertainment will provide music.
Kids’ activities will include face painting, moon bounce, temporary tattoos. Sweet & Sassy will also be on hand to provide manicures and up-dos.
For more information, contact Brittney Canales at 713-828-7647 or brittney1206@hotmail.com.
To make a tax-deductible donation in honor of Gearheart, please send a contribution to the NFT Ohio* Transplant Fund, 5350 Poplar Ave., Suite 430, Memphis, TN 38119. Please be sure to write “in honor of Karen Gearheart” on the memo line. Secure donations also can be made online at www.transplants.org. Donors should click on “Patients We Help” to locate Gearheart.
*Gearheart resides in Ohio, but her sister and niece live in the Pearland area and are planning this event.
About NFT
NFT is a nonprofit 501(c)(3) organization based in Memphis, Tenn. that has been helping transplant patients overcome financial obstacles since 1983. NFT provides fundraising expertise and advocacy to transplant patients by organizing fundraising campaigns in the patients’ own communities. NFT’s fundraising campaigns have generated nearly $60 million to assist patients. NFT assists more than 1,200 transplant candidates and recipients nationwide. For more information about NFT, please call 800-489-3863 or visit www.transplants.org.

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”