Lung Transplantation Survival Rates Drop?

by Janet Grace Ortigas , The Guardian Express

Approximately, 1400 lung transplant operations are done in the United States every year. Hospitals all over the country carry out at least 20 to 40 operations a year, including more than 150 a year at UCSF and Stanford. The two Bay Area medical institutions announced that the patient survival rates a year after an operation ranges from 90 to 94 percent. However, national and local statistics show that 55 percent of lung transplantation patients survive after five years, and it indicates a drop in survival rates. The nationwide annual reports show that, only a third can expect to live for 10 years.

Dr David Weill, director of Stanford’s Center for Advance Lung Disease did his first lung operations in the 90s. It was still primitive then, but it became a lot better. The lung is the last organ to be successfully transplanted after multiple failed attempts in the 1970s to 80s. Doctors finally solved a couple of problems such as rejection and infection, which killed patients within days or weeks after the transplant. Since then, the one-year survival rate trends improved. Lung transplantation has become more common, but Dr Weill admitted that the mystery of that slow loss of lung function has not been solved. It is still unclear as to what causes most patients to die as a result of chronic rejection, and consequently the slow deterioration of the lung. Presently, lung specialists do not know how to stop or prevent this process.

Facts about Lung Transplantation

Lung transplantation is an incredibly complex operation. It is one option, a person in their final stage the disease can choose; usually after all other treatment options have proved unsuccessful, according to the University of Michigan Transplant Center. The operation requires surgical replacement of either one or two badly diseased lungs from a human donor. If patients have cancer, and they are too sick, having existing end of stage organ disorders, and infections, they may not be qualified.

Lung transplantation is not for everyone. The oldest patient qualified to receive a transplant is 65, but one can be as young as 18. The largest 5-year survival rate is about 50 to 60%. Diagnosis will indicate that the patient may need a single or double lung replacement due to cystic fibrosis. Because bacteria has settled in the lungs, which may spread and infect the new transplant, doctors tend to avoid the procedure.

The Risks of Lung Transplantation

With technology, improved surgery skills, and the work of pharmacologist, patients with single or double transplants survival rates and quality of life have improved. However, there are risks to such procedures. Statistics show that approximately 78 percent survive the first year, 63 percent survive for three years, and 52 percent for five years.

The National Heart Lung and Blood Institute report that the survival rate of double lung transplant is better than a single transplant, which translates to a survival rate of 6.6 and 4.6 years respectively. Doctors now use immunosuppressant drugs to counter lung rejection.

Major complications include rejection and infection. The immune system sees the new lung as a foreign object and a threat, thereby it creates antibodies, which may cause the body to reject the organ and the lung eventually fails. Rejection symptoms include: chest congestion, fever or flu symptoms, shortness of breath, and pain in the lung area. On the other hand, the infection can weaken the immune system, allowing viruses and bacteria to attack your system with little resistance. Long term medicines prescribed can cause diabetes, kidney damage, osteoporosis, and even cancer.

Patient Dilemmas

Aside from dealing with complications, patients requiring lung transplantation face surmountable problems. Patients have to wait for at least two years after diagnosis before qualifying. Many patients have died or will die while waiting. Nevertheless, there are patients who survived for many years without the transplant. The transplant is given to the sickest, according to Dr Steven, medical director of the lung transplantation program at UCSF. Allocation of organs is based on the vast differences in severity of one’s case. Since the establishment of the new allocation system in 2005, wait time has dropped, and so has the number of deaths.

Patients wait for months or even years. Transplants are usually subjected to ECMO or extracorporeal membrane oxygenation. A patient with failing lungs can no longer expel carbon dioxide. Thus, they are given a machine that takes the place of one’s lungs.  The machine pumps blood out of the body into a tube that passes through a tube, while adding oxygen and removing carbon dioxide. However, the patient stays in the hospital immobile, until the procedure has accomplished the desired results.

Written by: Janet Grace Ortigas

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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

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.

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John Alevroyiannis / Sunday Mirror

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Linda Wootton

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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.”

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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.   

Announcement - Toronto General & Western Hospital Foundation

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/

Cheryl McEwen with Michael Burns

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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

Lia Steakley, http://scopeblog.stanford.edu 

“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.

Previously: Meet the filmmakers behind “The Power of Two” and Living- and thriving- with cystic fibrosis

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:

• LinkTV (nationwide on satellite): DIRECTV Channel 375 and DISH Network Channel 9410
• KCET (Southern/Central California): Click here for channels. 
• Online (nationwide):www.ThePowerOfTwo.tv 

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. 

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Fundraiser for Oregon man needing kidney/pancreas transplant

‘A longer, healthier life’ 

By Jennifer Moody, Albany Democrat-Herald, Oregon

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.”

Read More: http://democratherald.com/news/local/a-longer-healthier-life/article_83bfd984-bdda-11e2-9dcf-001a4bcf887a.html

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Hundreds walk/run for 15-year-old Kayla

CTV, Kitchener, ON, Canada

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.

PHOTOS

Kayla Baker as seen in this video still from January 2013.

“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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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.

May 7, 2013

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.

Register now!

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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