healthmedicinet

• Cystic Fibrosis sufferer Poppy Roberts would rather take a smoker’s lungs
  
• The 23-year-old has been waiting for new lungs for two years
• Poppy spends two weeks a month in hospital receiving antibiotics
• Takes more than 60 medications a day, and sleeps with an oxygen mask
  

By
Eve Mcgowan

PUBLISHED:

17:00 EST, 15 March 2014

|
UPDATED:

17:26 EST, 15 March 2014

IT IS a stark choice: whether to suffer the agonies of the lung disease cystic fibrosis, or risk getting cancer after accepting a donor lung from a heavy smoker.

As The Mail on Sunday revealed last week, doctors want the lungs of such smokers to be offered more widely to transplant patients in a bid to boost the number of lifesaving operations taking place. Currently, a third of those on the waiting list die before organs become available.

The Cystic Fibrosis Trust (CFT) argues that despite the cancer  risk, cystic fibrosis sufferers should be given the option of having ‘reconditioned’ organs, which could  come from a smoker or those with other diseases.

DesperateL Cystic Fibrosis sufferer Poppy Roberts, 23, from Monmouth would rather risk with smoker’s lungs after waiting for two years for a transplant

And one CF patient, Poppy Roberts, is certainly willing to take the risk – because for the 23-year-old, time is running out. The average life expectancy for someone put on the lung transplant list is two years – the exact time Poppy has been waiting.

‘I’d rather risk lung cancer in five years’ time than stay in my current situation,’ she says. ‘I can’t afford to be fussy. I don’t know how long I’ve got left – it could be six months.’

Poppy, who dreams of a career in fashion, currently spends two weeks of every month in hospital receiving intravenous antibiotics to halt the infections attacking her body. She  is also reliant on more than 60 different medications a day, and needs to sleep with an oxygen mask at night to help her breathe.

‘Right now, I don’t have a life,’  says Poppy, from Monmouth. ‘If smokers’ lungs would give me a  half decent life for a while, I would take them. On bad days it feels as  if I’m drowning as I’m constantly gasping for breath.

‘I’m dying but there is a chance I could live longer with a smoker’s lungs. Isn’t that what life’s about, taking a chance?’

In 2012, 188 lung transplants were carried out. Yet at any one time there are about 240 people waiting for such an operation. Recent developments in techniques, sometimes dubbed ‘washing’, mean that today just over a third of lung transplants come from patients who smoked.

Doctors believe that if rules were relaxed further, up to 100 more lungs a year would become available. These would be from groups designated ‘sub-optimal’ – not considered good enough to donate.

Campaigners also want the rules regarding age limits for donors erased, and for lungs from those with pre-existing medical conditions such as asthma, diabetes and even hepatitis to be considered viable.

‘Common sense suggests that lungs from a donor who smoked can’t be very healthy, but studies have shown that three-year survival rates following a lung transplant are unaffected by whether or not the donor was a smoker,’ says Andrew Fisher, Professor of Respiratory Transplant Medicine at Newcastle University.

‘Some risk continues to exist, such as development of lung cancer in the donor lung of a smoker. Tiny cancers are not visible on inspection so there is a small chance that such a cancer could be transplanted with the donor lung. But this is a very rare occurrence.’

Donation, donation: The average waiting list for new lungs is two years

The average survival after a lung transplant is six years. ‘It is more important to get a transplant performed than worry about potential risks that may or may not happen  15 years later,’ adds Prof Fisher.

In August 2012, there was shock at the lung cancer death of Jennifer Wederell, a 27-year-old CF patient.

Sixteen months earlier she had undergone a lung transplant – she later found out that the donor had smoked 20 cigarettes a day throughout their life.

Her widower David, 29, says: ‘We got the devastating news of the cancer diagnosis in March 2012. Almost as an afterthought, the consultant revealed that her lung donor had been a smoker. We were incredulous that this hadn’t been mentioned before her transplant.’

Despite what happened, David still believes other CF patients should be given the choice of accepting a smoker’s lungs.

‘I support the CFT in its quest for extended criteria to increase the number of donors. But we have to ensure the transplant process is transparent. Someone else might have accepted a smoker’s lungs  for a chance of life, but Jennifer wouldn’t have risked it.’

Although the number of patients requiring transplants increases every year, the criteria for deciding whether lungs are suitable for operations has changed little in 30 years. Currently only 20 per cent of the donor lungs available in the UK are used for transplant.

‘We don’t try to persuade someone to take a smoker’s lungs, but we offer them a balanced view of any risks and allow them to make the decision,’ says Prof Fisher.

Jennifer was never allowed that choice and the hospital that treated her, Harefield, has since apologised and revised its policy on informing patients about the risks of cancer.

All donor lungs are carefully assessed according to standard guidance set by the International Society for Heart and Lung Transplantation (ISHLT). Surgeons look at how well oxygen is getting in to the blood, and carry out a chest X-ray to check for signs of infection.

During a donor operation, they are able to carry out a visual assessment of the lungs and information about the donor’s smoking history is always collected from the next of kin by a specialist nurse. ISHLT rules say that donors should have smoked no more than one packet  of cigarettes a day for 20 years. Anyone one who has smoked for more than 20 years falls into the category of a ‘marginal’ donor.

A technique called Ex Vivo Lung Perfusion, which attaches the lungs to a ventilator that supplies oxygen and mimics breathing and pumps them with a nutrient fluid, allows doctors to further assess the performance of the lungs.

‘Smoking is an easy thing to blame when things go wrong,’ says Prof Fisher. ‘No donor organ is brand new, but in every case we’re confident that the donor lung can function and is good enough to save the life of that patient.’

For Poppy, any set of donor lungs is better than none at all. ‘Until you are on the waiting list you cannot picture what it’s like,’ she says.

‘Given a choice between not having a transplant or receiving the lungs of a smoker, I’d take my chance for a better life rather than live like this.’

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