Sadly and suddenly, John Kirtley who created and ran these Breathless websites, died peacefully in his sleep on the 10th of June 2008. He was buried and received a private woodland funeral nearby.  As his wife, I have become the owner of the various sites he created. We are advised that they are valuable to patients and a great international memorial to a very brave man. Together with my daughter Camilla, we have decided to ask John's close friends David and Terry if they will continue to run them. (Details below) Please accept our apologies for the delay in posting this announcement, but it has taken us much longer than expected to gain access and arrange for its insertion.

To all of you who have used the sites or have corresponded with John, please accept my sincere thanks. The letters you have written and questions you have asked were the things that kept him going long after the medics had predicted. They were a lifeline for him and maybe also in return, for some of you. Although it will be hard to match John's wide experience, David and Terry are both very knowledgeable COPD patients. When you get to know them you will realise that they have the same motivation to help fellow sufferers as did John. They await your wisdom and your questions. 

Yours in friendship, Joan Kirtley

Messages from David and Terry

Dear Friends of John and all who use his Websites,

Please note that we are entirely free from any commercial interests.

I am David Boswell and live in Dorset. I am a retired microelectronics engineer and now a free-lance journalist. As a lifelong asthmatic my COPD is rated as severe. I will be attempting to look after the management and administration of the site itself and dealing with most of the general issues other than emphysema, i.e., I will cover all asthma, bronchitis and related pulmonary subjects. John has already published articles by me in the website so some of you may already know my darkest secrets. I hope, over the coming months, to get to know as many of you as possible. For the time being I ask that all correspondence relating to any of the websites should be e-mailed to me at Boscon@metronet.co.uk. Also for the time being I will forward Terry's mail to him within 24 hours of receipt and organise the posting on site of your various points, letters and advice. We will both reply direct to you where appropriate. The wording of contact data in the sites had needed to be changed. This has been done.

Personal letters to Joan may still be sent to John's existing e-mail address, but please appreciate that she is not in a position to deal with any matters connected with the websites. We will attempt to answer any e-mails addressed to John at his own address during June and up to 30th July.

My name is Terry Mackay I am 67 years old, a retired police officer and I live with my wife in Hatfield, Hertfordshire. I have chronic emphysema. I am currently on 2lt. of oxygen per minute for between 12 and 20 hrs per day. I will be more than happy to hear from anyone and I will do my best to answer an questions or help with any problems. We had a saying in the police force, "If I don't know the  answer, then I will find someone who does". I am about to go into hospital to have a cataract removed (not one of my 'must do' things before I die) but it will be one more thing I will be able to answer any questions about! My general role will be to deal with matters related to emphysema, oxygen issues, and I have a good working knowledge regarding claiming Disabled Living Allowance.

Best wishes to you all, David and Terry

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 didn’t 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."