Page last updated at 01:00 GMT, Saturday, 21 November 2009

Lung damage is a creeping killer

By Jane Elliott
Health reporter, BBC News

Lung X-ray
COPD is the fifth biggest killer in the UK

When Lynda Mitchell dies, she intends to have a humanist funeral - she has the whole ceremony planned.

But although she is ready for her death, she would not want anyone to think she is simply waiting for it to happen.

"I know I am dying but I don't want to die - you have got to keep fighting it every day," said Lynda.

Five years ago doctors delivered the news that she had terminal chronic obstructive pulmonary disease (COPD) and had just months to live.

COPD is an umbrella term for a group of lung diseases that include chronic bronchitis, emphysema and small airways disease. Over a long period, lung damage impairs the flow of air in and out of the lungs.

If only I had known then I could have taken all the steps to protect myself. Now I just sit in a chair and am fed and watered - I don't do much else, really
Lynda Mitchell

Lynda says her medical records show mention of the condition 25 years ago, but it is only comparatively recently that she has been made aware of just how ill she is.

"You have to face death," she said. "Once you have faced it and looked at it, it is not so scary.

"When I go I will be glad to, as my body will be so tired, but I have promised my daughter I will fight.

"I am really tired all the time and tight-chested. I can't wash or dress myself any more. I can do little bits, but mostly I need help.

"If I try to just wash myself I go blue round the mouth, the chest tightens and my head pounds. I can do less and less each day.

"I am end stage. I know I haven't got long to live. I will probably get an infection that I won't be able to get rid of because my lung function will be so poor.

"Probably pneumonia or a heart attack will kill me - my heart has to work so hard now to help me breathe."

'Do not resuscitate'

Lynda, 52, from Bristol, says her desire for life does not stop her being practical.

The hardest thing for her was deciding she did not want to be resuscitated.

"It took me a year to fill in the form," she said. "I have now and I've put it into a drawer."

COPD is the fifth biggest killer in the UK; globally, it is estimated to kill more than 250 people like Lynda every hour.

But Dr Noemi Eiser, honorary medical director of the British Lung Foundation (BLF), said that although incurable, the prognosis was not always so bleak - if diagnosed early enough symptoms could be managed.

"Well over 80% with this are smokers and if you can persuade them to stop then the rate of decline of their lung function and their symptoms will be greatly reduced," she said.

"It makes a very big difference - much more than any medication.

"Pulmonary rehabilitation (a tailored exercise programme) can also improve the quality of life quite a lot.

"But despite the benefits of early diagnosis, people are still not having tests."

Serious symptoms

A BLF study released this week shows that almost three-quarters (73%) of smokers and ex-smokers have not had a lung function test, despite 21% of this group experiencing symptoms of a COPD in the past 12 months.

It is estimated that 3.7 million people in the UK have the disease, yet only 900,000 people are currently diagnosed.

COPD includes the conditions bronchitis and emphysema
Symptoms include shortness of breath and phlegm
Most chronic lung diseases like COPD get worse gradually over a number of years, with breathing becoming more and more difficult
It gets to the stage when any exertion, even changing position, talking or eating can produce breathlessness
By 2020 COPD is predicted to be the third biggest cause of death in the world

Lynda, a non-smoker, who has suffered lung problems since getting pnemonia as a teenager, said she knew her symptoms were serious.

"I knew there was something wrong and kept saying I was breathless but not wheezy. Then I was rushed into hospital with what they said was an exacerbation of COPD.

"I said I had never heard of it, but they said it was on my notes from 1984. If only I had known then I could have taken all the steps to protect myself.

"Now I just sit in a chair and am fed and watered - I don't do much else, really.

"I could have made sure I exercised more and was on the medication and oxygen sooner and been monitored."

Lynda thinks it is because she had always been fit that she has survived for five years since her initial diagnosis.

"My husband and I have been together 30 years, but we are not husband and wife any more - he is my carer. My daughter is 23 and for half of her life I have been ill."

Support group

But despite her severe disability, Lynda is still determined to get something from her life.

"I have a mobility scooter and run a support group," she said. "I try for a quality of life. I go away on holiday and go shopping. I get exhausted, but still try to do stuff.

"But it is like being a baby again as you have to take a lot of stuff with you like oxygen, which I need 24/7.

"I suffer depression and panic attacks. I have osteoporosis and break ribs coughing.

"I have a good sense of humour and I like to make people laugh, but the longer this goes on the harder that is to maintain."

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