HOME PAGE FOR COPD AND EMPHYSEMA SUFFERERS AND CARERS
THIS PAGE WILL INTRODUCE COPD, THE AUTHOR AND AT THE BOTTOM OF THIS PAGE A SUMMARY OF THE PROGRESSION OF MY DISEASE.PAGE TWO WILL FROM NOW ON COVER THE WEATHER, SITE AND HEALTH NEWS.SOME LINKS MAY BE BROKEN (FOR NOW) THEREFORE PLEASE CLICK ON A PAGE ABOVE THAT INTERESTS YOU.
STOP PRESS -READ NEXT PAGE FOR IMPORTANT NEWS
WELCOME TO ALL READERS
This site is primarily for patients and especially for those suffering from emphysema now known as COPD
WHAT DOES COPD MEAN?
Well it stands for Chronic(that means it progresses slowly) Obstructive(that means it causes narrowing of the airways in your lungs making it more difficult to breathe) Pulmonary(that means a disease of the lungs)Disease(obvious!). COPD!
So does COPD cover just emphysema? Unfortunately no – COPD also covers chronic bronchitis, asthmatic bronchitis and other airways diseases. But it does not cover lung cancer.
· COPD kills 30,000 people a year in England and Wales . It is the 5th biggest killer in the UK and the 5th biggest killer worldwide
· COPD is the only major cause of death whose incidence is on the increase
· There are an estimated 3 million people with COPD in the UK , although only an estimated 900,000 are correctly diagnosed .
· In the UK, the rate of COPD has been increasing nearly three times faster amongst women than men
· COPD kills around 12,000 UK women every year [vii]
According to a new study, many people with emphysema and bronchitis continue to smoke despite the risks.
Smoking plays a huge role in chronic lung disease and is the major cause of chronic obstructive pulmonary disease (COPD). Clearly, quitting smoking is a key part of managing this disabling condition. But this message is not being acted upon, according to a new study from the Centers (USA) for Disease Control and Prevention. They surveyed over 11,000 patients and found that more than 36 per cent are current smokers, compared to 22 per cent of the general population.
Around half of the COPD patients had tried to quit smoking and 14.6 of them succeeded - mostly without any help. Of the smokers with COPD, around a quarter said that they had not received any advice on smoking cessation. Given that counselling and medication can help people quit smoking, more should be done to offer this support to people with COPD.
Source
American Journal of Health Promotion July 2006
If you are reading this you will probably have already been diagnosed with COPD or have been told for example that you have emphysema.
I am a patient and I am responsible for this site. My name is John Kirtley and I am fortunate enough to live by the sea.
IN VENICE 2006
From the Express & Echo MARCH 10 2008
I was diagnosed with severe emphysema in 2002 and it was a big shock I can say with authority! Since then I have learnt a great deal on the subject – read all the books, attended all the courses, found out how to complain, who to ring for help, benefits available and am now actively involved , as a patient representative, in the management and care of COPD patients.
Although this site is directed towards patients with emphysema, much of the information will be of equal use to all sufferers of COPD or other respiratory diseases. The web site will also include sections that are directed to all members of the medical professional interested in learning more about this disease.
You might have heard of this site from a Breathe Easy Group or with more difficulty through GOOGLE - although it is first in the world if you type in COPD EMPHYSEMA and its general ranking is improving especially on MSN or
I have two companion sites
WWW.COPDPATIENTDIARY.CO.UK- occasional entries. Becoming less I'm afraid. Will announce when new infoprmation is available.
WWW.COPDFRIENDSHIPS.CO.UK - see next page
I was born in a textile town in Yorkshire in the mid-1940s. The air was thick with the fumes from scores of chimneys, and the limestone walls on the moors around were blackened by soot. I had constant attacks of bronchitis and was lucky to survive bronchial pneumonia at 5 years of age. Bronchitis continued to affect me from time to time up to the age of 19, although by then I had moved away from Yorkshire. Recent research indicates that atmospheric pollution and childhood bronchitis retards lung growth which has passed its peak at around 8, although lung growth in general continues at a slower rate until adulthood. It is highly probable that my lungs did not fully develop and that made me susceptible subsequently to lung disease, especially if I introduced aggravating factors. I started smoking at University in 1966 and curiously never developed bronchitis after that. I took up mountain climbing and felt fit as a fiddle, downing pints with my new literary friends and we all passed cigarettes around like chocolates. At first I smoked 10 a day and by the time I had finished University (B.A.Honours) this had increased to 15.
I took up teaching in 1966, a stressful job then and now, and promptly escaped to the pub every night and smoked. By the time I became a Lecturer & Head of Departments in F.E. and sixth form colleges from 1970 - 1995, I smoked a pack a day. In 1990 I took a year off in Ireland to write a book and my smoking habit increased to 30 a day. But I said to myself it would be OK because I had switched to a low tar cigarette but then I started buying King Size cigarettes. During the early 90s I completed a year's part-time course in psycho-dynamic counselling at Birkbeck College and besides teaching worked as a volunteer for Victim Support.
By 1995 I had moved to another part of the country and was unable to get a job in further education. I did however continue to work for Victim Support, and took many useful courses. However I became very depressed and began to feel tired and breathless every time I left the house. By 1998 I felt so desperate that I started drinking rather more than was good for me. I was diagnosed with depression and agoraphobia and prescribed Seroxat and given cognitive behavioural therapy. Meanwhile my marriage crumbled under the strain, which probably encouraged my GP to continue with his diagnosis.
In 2000 I developed a smoker's cough and gave up the cigarettes (I was on 2 packs a day by then) but three months later was admitted to hospital coughing up blood (brown not red). I was diagnosed as having bacterial pneumonia and sent home after a week. No mention was made of lung disease only that my lungs "were not those of a young person". Needless to say my breathing worsened and I became largely housebound and on incapacity benefit, although I managed to nearly complete a K100 course at the Open University in Social Care and Management. In fact it was the incapacity benefit medical GP that came to my rescue in late 2001, asking me to blow into a flow meter and then ordered me to see my GP next day and book an appointment with a consultant. Six months later I took extensive tests in the hospital and was diagnosed with SEVERE EMPHYSEMA or COPD. I didnt know whether to laugh or cry but at least I was given medication which helped my breathing, and by now my partner returned as a compassionate companion and part-time carer, now that we knew what was wrong with me, and of course the fact that my drinking bouts had stopped!
I completed a course in Pulmonary Rehabilitation, an Expert Patients Course and immersed myself in trying to understand this disease. The rest is on my Home Page.
I have learnt and am still learning many lessons during this fight with Emphysema and I hope to re-introduce my experience in more detail where appropriate in the rest of this site.
A SUMMARY OF THE LANDMARKS IN THE PROGRESSION OF MY DISEASE
1997 - 1999 First started getting breathless going outdoors - had to stop every 50 metres or so on shallow hill road to shops. Diagnosed with agoraphobia, treated with seroxat & cognitive therapy. Nothing helped. Became very depressed, drank too much at times, marriage in shreds. Became housebound and panick stricken.Mother died. Divorced my wife.
2000 Developed bacterial pneumonia. Carted around from ward to ward. Oxygen offered by doctor snatched away by nurse. X-rays taken - nothing diagnosed. Remained depressed and unable to do much. Felt suicidal. No work again - still on invalidity benefits.Saw many GPs in the practice.
2002 Referred to benefit doctor who immediately saw that I was breathless and made me blow into a flow meter. Ordered me to see the GP again immediately. 6 months later saw my consultant who diagnosed SEVERE EMPHYSEMA FEV1 0.86 about 26%. During this year Joan returned realising why I had been so depressed and had been drinking from time to time. Acquired the right drugs & felt more in control. Pulmonary Rehab course.
2003 Expert Patients Course. Realised that instead of suing the medical authorities for misdiagnosis & lost years I could fight back by understanding the disease & informing others. Bought every book on the subject. Back to hospital - tests showed that my FEV1 had fallen to 0.74 - I was scared!!!
2005 - 2006 - moved to be by the sea better air. No exacerbations. Became a patient representative on the PCT panel for the care and management for people with Long Term Conditions. Started 2 web sites in early 2006.
2007 May/June Disaster. Fell over my concentrator tubing (became entangled) and suffered a fall - 2 broken ribs and a pneumothorax. Ended up in intensive care, a high dependancy ward & then six weeks of pain. Told to take oxygen 24/7 and I opted for 24 hours.Pushed for lung stents at the Royal Brompton hospital in London & journeyed up there for breathing tests. FEV1 now down 0.51 or 15%. They looked at me as if I should be in bed. Not suitable for lung stents but asked me back (this September) for a sleep test with NON INVASIVE VENTILATION to lower the carbon dioxide in my blood. Still capable of walking for one hour outside with continuous oxygen flow at 4 litres.
Released with NIV equipment for use at home as a trial. I am writing a new page on this.