Penny Rickman dreaded tackling a large pile of ironing or vacuuming her house — not because she particularly hated doing chores, but because it would leave her gasping for breath.
‘If I had lots of ironing to do, I’d be struggling to breathe before I’d finished half of it,’ says Penny, 63, a marketing account manager from Twickenham, South-West London. As well as breathlessness, Penny was susceptible to chest infections and put it down to having asthma as a child.
But when she was 54, lung function tests and a CT scan revealed she actually had emphysema, a lung condition that comes under the umbrella term chronic obstructive pulmonary disease (COPD). As well as emphysema, COPD includes chronic bronchitis (inflammation of the main airways in the lungs).
Around 1.3 million people in UK have chronic obstructive pulmonary disease which causes breathlessness, coughs, wheezing and frequent chest infections
Patients with COPD typically become breathless with minimal exertion; they often have a chronic chesty cough, excess phlegm, wheezing and frequent chest infections.
Around 1.3 million people in the UK have COPD. A blood test revealed Penny, like an estimated 25,000 people, lacks an enzyme called alpha-1-antitrypsin that protects the lungs from damage — the fact that Penny smoked until she was 40 could have made her more vulnerable to emphysema.
The condition is caused by damage to the tiny sacs in the lungs called alveoli. The elastic tissue in the alveoli walls breaks down and the lung becomes baggy and full of holes that trap air.
In some people, these baggy parts of the lung get in the way of healthier areas and they can struggle to completely empty their lungs — the extra work to move air in and out makes them breathless. As the condition worsens, it can eventually lead to life-threatening respiratory failure.
Lung surgery can help but only 100 people per year are offered one of two operations
Treatments include inhalers to make breathing easier and guided exercise programmes to improve and maintain fitness and ease symptoms. Eventually, patients may need oxygen from cylinders at home.
This was the stage Penny had reached by spring 2016. After her diagnosis, she’d been referred to the Royal Brompton Hospital in London and was given inhalers. But her lungs continued to deteriorate.
‘As my lungs got worse, I had to rely more on a portable oxygen concentrator,’ she says.
‘I felt very self-conscious dragging it around, especially at work. Carrying shopping from the car or gardening became a real ordeal. Even walking upstairs to my bedroom left me very puffed out.’
Now a new trial hopes to prove the need for more patients to access treatment (photo for representation only)
In 2016, a chest infection left Penny hospitalised. It was at this stage she was offered surgery.
There are two surgical procedures approved for patients with copd, in essence both work by reducing the capacity of the lungs — cutting off the inefficient, damaged parts.
However, currently only around 100 patients a year actually receive this kind of treatment, says Dr Nick Hopkinson, a consultant chest physician at the Royal Brompton, who thinks it should be offered much more widely.
‘Although this treatment is not suitable for everyone, there are likely to be approaching 20,000 patients who could have it,’ he says.
As part of a new trial at the Royal Brompton, led by Dr Hopkinson, Penny was told she could have one of the two procedures available — lung volume reduction surgery (where the most diseased lung tissue is cut away) or an operation to have endobronchial valves fitted.
About 8mm in size, these devices are placed into the airways leading to the worst affected part of the lung. They allow the air in the lung to escape, but will not allow any more to enter.
This causes that section of the lung to collapse, so it is no longer in the way of the healthier lung.
The two treatments are being compared in a study to discover which is best for people with COPD. The researchers hope the information provided will lead to more people who could benefit from either procedure being offered surgery.
Dr Hopkinson believes there needs to be a greater awareness of how lung volume reduction procedures can help patients. ‘It’s still thought of as a last-ditch treatment,’ he says.
This means people with COPD are only referred when their condition is at a very advanced state, for example when they can only walk a few steps, by which time it’s often too late.
‘A lot of doctors also think that lung volume reduction surgery is more hazardous than it actually is because they are basing this on the results from trials done 15 or 20 years ago,’ he says. ‘But techniques have moved on.’
A study from the Royal Brompton and Glenfield Hospital, in Leicester, published last year, found patients often had to ‘fight’ to be referred for this type of treatment and concluded it needed to be made more accessible.
‘These procedures will not cure the emphysema,’ says Dr Hopkinson. ‘But they will effectively turn back the clock by two or three years and can improve patients’ day-to-day lives.’ Penny underwent the valve procedure on her left lung, her worst, in February last year.
The procedure is less invasive than the surgery to remove damaged tissue, and is usually done under sedation and local anaesthetic. A fibre-optic camera is used to guide the placing of between three and five valves in the airway.
The procedure took about 15 minutes. ‘Once I was back from theatre I was breathing almost normally straight away,’ says Penny. ‘I had a slight sore throat, but otherwise felt fine and was back at work under two weeks later.’
The other procedure on trial involves removing the worst affected tissue via keyhole surgery. Under general anaesthetic, an incision of about 15cm is made in the patient’s side and a device used to cut away and then staple the remaining lung to seal it.
The patient usually remains in hospital for about ten days.
The three-year trial comparing the two treatments, known as CELEB, ends in March 2019 and aims to recruit 80 patients.
As well as at the Royal Brompton, patients are being monitored at Glenfield and St Bartholomew’s Hospital in East London.
To be suitable, a patient has to be sufficiently affected by COPD for it to be worth doing an invasive procedure, but not so frail that it is no longer safe to do it.
‘For some patients with COPD, these procedures can bring dramatic improvements,’ says Dr Hopkinson. ‘So it is a real concern that people who may benefit from it are not being considered.’
To join the CELEB trial here.