A common story among COPD sufferers is that for years they were unaware of their slowly deteriorating health. Collete is now 46 years old but was not diagnosed with COPD until 22 October 2009. 

Over the years I went to different Doctors about other health issues but never really about any of these COPD symptoms, mostly because none of the symptoms I was feeling connected in my head as being anything to be worried about – like not being able to walk up one flight of stairs, (just thought I was tired) or falling asleep anytime, (again thinking I was pushing too hard and just worn-out). These became a bit of a joke with me calling them my ‘crash naps’. 

For the last 15 years I would have gone to my Doctor pretty regularly, including a couple of times every winter with chest infections. However, I don’t think even the Doctors thought about testing me for anything unusual – after all, I was fit and young and in my head I thought it was just a part of ageing and maybe they did too. Because I have always been very fit and I have been a long-time member of my Gym (going at least 4 times a week and being an average jogger) it was winter 2009 that was the turning point for me. I went from being able to fairly easily complete a cardio class (even if getting puffed) or run/jog/walk 5 ks fairly easy to not even being able to go 300 metres.

I do think the amount of time between having my symptoms noticed/tested will impact on the treatment or what will eventually become the outcome – because even though I waited, I am very lucky in that my diagnosis is very early in the disease compared to others. As such, I have a much better chance of stabilising the condition. I am conscious of keeping up with my exercising and at the same time conscious of resting when my body needs it.

I think it was the combination of moving to a colder climate (to Canberra from the Gold Coast) and increasingly feeling like my fitness was just diminishing that finally made me think that something out of the ordinary was happening. That feeling eventually helped trigger a Doctor to listen when I was telling him “I can’t even get up the flight of stairs at home” – “it feels like someone is sitting on my chest – like the air is only going down into my lungs halfway”. This finally prompted him to send me to a specialist.

Yes I did smoke on and off for 18-20 years, stopping finally for good about 9 years ago. But I was also raised on a rural property in an environment of extreme dust, from stock yards to wheat dust. I also worked in night-clubs for 10 years with heavy exposure to passive smoking, over a shift which could be as long as 8 hours. 

I was asked recently what questions a Doctor can ask to a patient to trigger the thought process of looking for this disease! There are a few but I think it comes down more to the patient telling the doctor the right information. Building a rapport with your doctor is also vital, so they know that they can rely on what you’re telling them.  The key to all that for the patient may well be simply knowing that there is such a disease in the first place.

Hayden Ventura-Chase is only aged 19 but acts as a carer for his elderly grandfather Joe Ventura. To have the views of such a young carer provides a new and welcome perspective on the issues of caring for people suffering from COPD.

In my experience as a carer so far (about 15 months) I have seen my grandfather’s health in constant fluctuation, ranging from general breathlessness to a near state of complete collapse, where he constantly shakes and can’t find the strength to stand. Even with all these ups and downs and my grandfather’s two serious conditions, he still finds it within himself to keep some form of independence and clings to that independence like the stubborn old goat that he is.

Most days I spend doing general chores around the house, cooking, cleaning, washing and even now I’ve taken on the role of his personal driver. But the biggest task I have to do as my grandfather’s carer is watch over him.

As of September last year he has been suffering from depression and anxiety more and more, this is because of two things;  his deteriorating health, but also the loss of his wife and my grandmother. Some days it is hard, very hard actually, to be his carer, as when he does become depressed and anxious he becomes somewhat ‘cattier’ towards people. Not only this, but he also speaks with such sadness and desperation that it is almost to heartbreaking for me to bear, but I do, as I love my grandfather and intend to stay by his side until I am no longer needed.

So through the good and the bad I have stuck by my grandfather, it has been taxing at times, physically, emotionally and mentally, but I still stand by my decision to take care of him. We bicker through the bad and laugh through the good, and honestly, I am glad that I have stayed through everything. 

David was motivated to write this paper so that the experience that his family has gained may be available to any other persons who are diagnosed with this very rare condition. He suggests that GPs should order exploratory blood tests for all patients with breathing difficulties.

Alpha-1 anti trypsin (AAT) or (A1AT) deficiency is an inherited condition. A mutation in the AAT gene gives rise to absent, abnormal or decreased levels of the AAT protein. Without functional AAT protein, the small air sacs of the lungs (alveoli) become damaged, causing shortness of breath, wheezing and lung disease. The accumulation of abnormal AAT protein in the liver contributes to liver damage, causing cirrhosis. This has led some to describe AAT as the only condition where you can get ‘emphysema without smoking and cirrhosis without drinking’. When a person is deficient in Anti- Trypsin there is a risk of serious harm to the lungs. Because of this, patients with known Alpha 1 Anti-Trypsin deficiency must consider their life style decisions such as employment, environment and especially smoking.

Although AAT is extremely rare with around 1 in every 2,500 persons in Australia affected, all asthma sufferers should have the blood test to eliminate this possibility and if discovered their treatment and management should be modified.

Our daughter was born at St. Helens, Christchurch Women’s Hospital in 1968. During my wife’s pregnancy the doctor was aware that the RH negative syndrome had been evident at the birth of her second child, a son born in 1962. Because of the perceived risk to the new baby a blood sample was taken upon her birth, rapidly analysed with a decision taken to conduct a blood transfusion immediately following her birth. She was in intensive care at Christchurch Hospital for two days prior to being united with her mother for return to the family home.

Our daughter’s childhood and youth years were uneventful with no evidence of any respiratory difficulty. Around the age of 15 years, like so many other young people she started smoking. There had been no experience of smoking in her home, peer pressure was the motivator. She received considerable encouragement from her family to quit but to no avail. At age 19 she commenced her career working in the clothing garment industry (recognised as a dusty environment) firstly as a machinist advancing to pattern making and later to production management. Two years later she married and over the next few years had two daughters but sadly the smoking continued.

Around 2002 both she and her husband occasionally showed symptoms of asthma which over the next couple of years caused our daughter to be admitted overnight to Hutt Hospital with breathing difficulties. In mid-2004 she was again admitted to Hutt Hospital and this time was seen by a Registrar who had only that week arrived from the United Kingdom. He was not satisfied with her condition and said, “I think there is some thing different here” and ordered the simple blood test to measure the Alpha 1 Anti-Trypsin. He discovered the deficiency and ordered a genome test that confirmed that our daughter definitely was afflicted by this genetic hereditary problem.

When she informed her GP about her condition he had no knowledge of the condition and she provided him with a considerable amount of information. Following this diagnosis and further investigation our daughter was advised that her lungs were so badly damaged that the only remedy was for her to undergo a lung transplant. This dramatic information was sufficient for her to immediately cease smoking.  Sadly the damage was already done. Although smoking does not cause this problem there is no doubt that it certainly dramatically advances the damage to the lungs. She was immediately placed under the supervision of the Respiratory department at Auckland Hospital and also Hutt Hospital.

Our daughter was a very independent and focused person. She was not prepared to accept the inevitable but also was not prepared to wear a medic alert bracelet or carry a portable oxygen machine with her at all times. She visited the Respiratory department at Auckland, initially annually and in the last two years, twice a year.

Over the last three years she took the advice of the Medical staff and attended a gym weekly, later twice a week when the hospital had medical staff to supervise her. Her gym activity was undertaken whilst using oxygen. She invested in a treadmill for use at home again with oxygen support.

Over the past two years Sue’s typical situation was that in the small hours of the morning she would wake and need to have a cough. Often she would need to use a nebuliser and often oxygen. She would get back to sleep and then rise around 8 am and again have a good cough. She was then off to work where she had a very senior position as production manager with a very supportive private company who accepted her condition. Because of the value to this company that she provided they were able to find meaningful employment for her husband so that he was able to give her support if necessary.

Our daughter’s responsibility required her to make business trips to Shanghai once a year. The company sent her husband with her to provide support. An interesting detail is that she always commented that while in Shanghai she felt better than any other place.

Because of her condition she never ventured any where without either her husband or one of her daughters. Occasionally during this period when she awoke in the early hours of the morning with breathing difficulties her husband took her to Hutt Hospital where she was put on a ventilator. Sometimes when she had a lung infection she would be given anti-biotic treatment. These periods in hospital were usually less than six hours before she was able to return home and to work.

When she and her husband visited the Respiratory/lung transplant unit in around August 2009 she was advised that her condition had deteriorated and that some damage was noted to her heart. The forecast for her transplant was recorded as around 5 to 6 years. During that and the later visit she and her husband undertook various tests and consultations with various specialists in preparation for the Transplant. They and the family were very aware of the seriousness of this procedure and were told that only 50% of transplants patients were successful and of those, only 20% survived after two years and those required anti-rejection drugs for the rest of their life. Armed with this knowledge our daughter, her husband and their family were extremely positive for the future especially with the time line because their daughters would be young adults at the time of the procedure.

In March 2010 Sue her husband and their daughters again visited the Respiratory/ lung transplant unit and received the heartening news that her condition had significantly improved and that now the forecasted date for the transplant was 8 to 10 years. This was great news and confirmed the great success of the fitness programme that she was undertaking. She was priding herself that she had gone quite some time without any lung infection.

But in mid-June 2010 she got a lung infection and was taking a course of antibiotic.  She spoke with her parents who were travelling in Canada around 20 July noting that she was still having problems and that the medication did not appear to be having an effect. Sadly in the early hours of 26 July she awoke as often had happened previously, and had a cough. She urgently called on her husband to get her Oxygen and then to urgently call the ambulance. Two ambulances arrived very promptly and transported her to Hutt Hospital with two paramedics administering CPR en route to the hospital.

Shortly after being admitted she suffered a Cardiac Arrest. Because of her condition she was transferred to the ICU at Wellington Hospital. Following further investigation the medical staff determined that she had a hole in her lung and that this had caused a pneumothorax which in turn had caused the cardiac arrest.

Over the next week she was in a coma and on life support, dialysis, ventilator and full monitoring. Sadly, even though some of the bodily functions appeared to be returning, the advice of the Consultant was that because of the cardiac arrest that she had been starved of oxygen for around 40 minutes and that following the various tests they had conducted the decision was taken to allow her to pass away peacefully, which she did with all her family around her in August 2010.

I have a very supportive son and daughter also living in Mornington. I was a smoker of 20 cigarettes say from  the age of 15 to 50 when I gave the habit up. I did not smoke during my two pregnancies; four years for the first and one year for the second.

Having been diagnosed as having chronic asthma at age 60, I did wonder why it was I was not having any ‘good days’. It was on moving to Mornington and joining ‘Better Breathers’ which I saw advertised in the local paper, that I started to learn about COPD which I had not previously heard of.

I asked my GP to facilitate tests at Rosebud Hospital, where the diagnosis of COPD was made after lung tests. I was then accepted into a pulmonary rehab course at Rosebud where I acquired skills to cope with my condition. The ‘Better Breathers’ self-help group was started and is chaired by a wonderful woman named Christine Hunt. She is tireless in seeking out and contacting speakers to educate COPD sufferers like myself. Knowledge is the key to being able to live with this disease, for it is frightening (especially at night, alone) not being able to breath.

Thanks to the efforts of Christine we are now able to attend rehab at Peninsula Health at Mornington. I have had help for almost 2 hours per fortnight to clean my home. I try to find the best way to do whatever else I need to do with helpful tips from the various speakers at ‘Better Breathers’. I also have a Safety Link alarm which has given me added confidence around my home in case of a fall. My GP assists me in every way and also does an extensive health assessment every two years. I also attend regular exercise classes so necessary for continuing good health.

Just recently I had my first visit to hospital after calling an ambulance due to breathing difficulty. I took the GP’s assessment along with my medication. The paramedics and hospital staff all declared the assessment extremely helpful.

About the future? I try hard to remain positive and surround myself with like-minded people. COPD cannot be reversed, but with help, we can maximise our quality of life.

Recently bereaved 80 year old Joe lives on the Central Coast of NSW, and describes how he finally came to cope with this debilitating condition:

I was diagnosed with emphysema a long time ago. The doctor told me if I valued my health I should stop smoking straight away.  I am too fit, this is not going to happen to me. How stupid and wrong I was!

I finally stopped smoking at the age of 69. I was still coaching 12 year-olds soccer at the time but while running the breathing was laboured. In a few words it was too late. First thing that happened was angina, then came shortness of breath. My late wife Jo was a nursing sister. She looked after me well but I still had the whole family constantly worried. When Jo was first diagnosed with cancer she did not pity herself. She cried and said,” Sorry Joe, I will not be able to look after you as I used to do now.”

Before Jo became ill we would often walk then my breathing suddenly stopped me as I gasped for air. This was happening prior to my current condition. After my wife died my resistance decreased and I was hospitalised on two occasions with severe chest infections.

I am now on oxygen 17 hours a day. I hire oxygen at $90 a month and the power bill is astronomical. I even had to spend $5000 on a portable oxygen unit as I cannot go out without it. I loved sports and swimming but now I am very apprehensive about going out. My children and grandchildren are worried stiff about me. My younger daughter Lorraine comes over on weekends and does my shopping and house work. My 18 year-old grandson Hayden who is a Uni student lives with me during the week and gets upset when I become breathless after trying to do something. He says, “ Grandpa, I am here to make sure that you do not do anything that is not good for you”.

I had been going to the gym before Jo became ill, and in January I resumed this activity. My breathing had become so bad that I was embarrassed when I had to do the exercises sitting down. Imagine if you can, a very active person who had spent a lot of his time playing sport, football, tennis and swimming, finding himself not being able to do the simplest of exercises - that’s me.

Am I coping with my condition? No, I am not. The once confident person has disappeared, gone, completely gone. There are times when I am alone at night. I stay awake for as long as my eyes can stand looking at a TV screen. Morning I am out of bed by 6 am. I have the oxygen on all night, but just walking to the bathroom sees it drop from 94 to 81. So I simply sit down on the bed and wait until the oxygen builds up to my satisfaction the I go back to sleep. Now thanks to the gym I am again trying to build up my confidence and ameliorate my condition as much as I possibly can.

Kenneth of Bateau Bay, NSW, started smoking when he spent three years serving with the British Army in Germany. He describes how this led to COPD and also offers some positive, practical advice to COPD sufferers:

My time spent in the Army was the start of my going downhill with emphysema. After the war cigarettes and tobacco were very cheap in Germany, a packet of cigarette was on shilling and eight pence for 20.

How did I realize I had emphysema? I was using the lawnmower and had trouble breathing, so off to the GP, then the specialist.

I have since been a member of the Long Gully Hospital Rehab Gym for over eight years now and with a nursing staff it is of great comfort.

I’m a married man with my wife as my main carer. I previously worked as a plumber but have been retired for 14 years.

The first I knew of COPD was the information given to me by the specialist who went into great detail about the ins and outs of the problem. The GP and specialist have been first class. The specialist explained to me that I won’t die with emphysema, more likely with a heart attack or pneumonia.

The effect on my life has been great, with shortness of breath curbing activity in the home or garden. Most people with COPD will find restrictions more so with hot or humid weather, but if you have a wonderful carer like I have, it makes life all right. To those people just diagnosed with COPD my only advice is to walk -walk & more walking!

My daily programme starts with a walk in the local shopping centre before shops open then home for a coffee. My main hobby is growing orchids in the shade house. I hope this story is of some value to maybe more than one person.

I feel regret that I ever had that first cigarette when I was 12 years-old and continued to smoke for 43 years.  The doctor, who first told me to smoke because it was good for the nerves better than medication for me, died of lung cancer. He also did not know the dangers of smoking back then and I do not blame him at all even though I forced myself to smoke because he said it was good for me. If only we knew then it was so bad.

I live with my husband who also has the beginnings of emphysema. I now have to ask him for help and I find that hard to do being such an independent person. At first I was in denial for several years until I was hospitalised a few times and then thought I had best find out more on the subject. I went to the internet and found a lady who directed me to a support group only five minutes away from me and I never knew it. So I went along and I read a lot and asked a lot and learnt a lot and now I run the Northern Windbags Support Group, with help from two others. It has been 12 years since I have been the President of the group and I am co-owner and moderator of the Lungaroos Internet Support Group for people with lung disease and their carers.  

I was told I needed a lung transplant a few years ago but this will not happen. I still walk at least a half kilometre a day until I build up again to a kilometre and do a half-hour each day on the treadmill. I do go up and down. I keep active but am finding it a lot harder and slower nowadays and need more help.

For my condition now - My life has changed to not knowing how I will feel each day and I have to plan the day to how I feel and make plans on the day, never knowing if I will be well in making arrangements in advance but just say I intend to go. I have learnt that my mind says ‘yes’ I can do something and my lungs say ‘no’ you can’t and I try to pace myself but usually end up huffing and puffing trying to gasp for air. I am still learning to pace myself, a hard thing to do. I have ups and downs, good days and bad days. How very scary it is when you just can’t get enough air to breathe.

I am always tired, everything seems an effort, getting dressed, undressed, showering, etc. I am on oxygen for exertion, so do not need it when sleeping or sitting still. I try to ignore that I have anything wrong but the continued reminder is always there – HUFF PUFF, HUFF PUFF! I often have people say how well I look. Ha! If they only knew how I feel, sometimes. I do get annoyed at it all. I do have days of feeling bad about myself but I don’t allow myself to dwell on it too long.

Mostly I have a good attitude and smile a lot because I am thankful to wake up and am still breathing and I love life even with severe emphysema, chronic bronchitis and asthma. I am much more aware and careful of going anywhere there may be ‘flu or colds within reason and also try to stay out of the cold night air. The weather affects me when it is too cold or too humid or too hot.

I cannot use public transport because of the odours of perfumes and fumes etc.  Shopping is sometimes a nightmare when people wear perfumes. To try to get away from them without making them feel bad because I have problems breathing near them. Driving in my car can also make me feel ill with breathing problems caused by the fumes of vehicles.

Socially a night out or night time activity is rare as by the end of the day I am too tired. I live with the hope that one day there will be better medications with less side effects or even a cure if not for me, then for others. Adjusting is always hard, not being able to do what you used to, not so long ago, giving up activities and fun things not being able to work any more and finances hard to adapt to. But I am learning to not worry about what I cannot do but love everything I can do and be thankful for that.

The loss of old friends when you do not do what you used to with them! Complications are my enemy, the viruses, the infections; sometimes it can be quite debilitating. Some people’s attitude to emphysema I find unbelievable when they say we who have emphysema deserve it because we were smokers. No one deserves to suffer so much and we were not all smokers.

How do I feel having COPD? I don’t like it one bit but life goes on and I appreciate the time I have. I am still smiling. Right now, ‘how wonderful it is to breathe’!!!! Have a good day and keep smiling.

Mary, now aged 75 lives at Oak Flats, NSW. Although only a light smoker for 20 years, she acquired COPD with its associated limitations on life style.

My occupation was Telephonist at the Wollongong Telephone Exchange for several years. I have been married for 53 years to my husband Keith. I smoked lightly for approximately 20 years from the age of 16, tried all types of stop smoking devices, did the Beutaco course several years ago and finally gave up smoking with the help of hypnotism in 1972. My health was badly affected, for example sitting outside on the step in the early hours of the morning.

I am not sure when I was diagnosed with COPD, but it would be several years ago. My GP (Dr Selvarajah) has been very helpful, first sending me to Dr Morantos (Lung Specialist) then to the Pulmonary Rehabilitation Centre at Shell Harbour Hospital, where we are in the capable hands of Anita Jurjevic, who really cares for us now. I am now under Dr Jones at the hospital.

With the walking and exercising I am starting to feel much better and still playing lawn bowls, but realise my limitations when climbing stairs or walking up slight incline. I hope this information is of some help.

Chris acquired asthma as a small child during the bombing of British cities during 1941 but it was not until she was in her forties that she was diagnosed with emphysema - horrifying news for a non-smoker! After years of treatment Chris realises that her ‘margins between good and bad health, are very small’. 

Mum and I were beside the school clinic when it was bombed in 1941. The dust from this incident turned me from a healthy two-year old into a very sick, wheezy, child with chronic asthma. I hated not being able to run about or play sports like the other kids.  I remember getting a bicycle for Christmas one year. I happily free-wheeled down the street and nearly killed myself getting home. I never rode that bike again.  Mum even sent me to Switzerland for a year when I was nine years old – an event that caused everybody sheer amazement in post-war Britain.

Everything triggered my asthma – dust, pets, pollens. I only went to primary school about two or three days a week because the chalk, dusted off the blackboard, triggered severe asthma attacks. (I got glasses when I was seven and my attendance improved when I could sit at the back of the class). Cigarette smoke was the worst asthma trigger of all and, in those days, everyone smoked everywhere I went. I was about three years old when I got my first puffer, which helped. It had a big black mask and sprayed a solution called WS48.

As I grew older I learned to manage my asthma and went on to complete Grammar School and train as a pathology technician at the Royal Sussex County Hospital. I emigrated when I was 23 and I worked at Prince Charles Hospital. I had been in Australia about six months when I collapsed and was admitted to Prince Charles. I was not expected to survive the night, let alone the 72 hours until those first doses of oral prednisone kicked in. (There were no aqueous solutions of prednisone in 1964).

Mick did not know what he was taking on when we got married in 1964. I was in and out of Prince Charles Hospital every two or three months with chest infections or asthma. Very high doses of prednisone kept me alive. I lived on a knife’s edge all the time.

Yoga helped me to break that vicious cycle – it taught me to breathe properly and co-ordinate movement with the breath. I was surprised that I could do yoga because it is a static form of exercise. My body was oxygenated properly for the first time in my life, and my whole system began to work correctly. At first I was so sick my dear used to drive me to and from the classes. I got fed up with going at one stage, but Mick pushed me into the shower and made me get ready to go to class. He could see the huge difference it was making to our lives as my health gradually improved. I went to my first yoga class in 1970 and I still go to a class each week. I practice yoga at home, for 45 minute, three days a week. I also walk about three kilometres each weekday (on the flat at Sandgate) with Mick.

I was in my forties when I was told I had emphysema, which was no doubt caused by all those years of passive smoking. I have never smoked! I did not seek outside help because, with my medical background, I knew what the diagnosis meant. I was a bit upset at the time but it just strengthened my resolve to keep exercising and stay healthy. And of course wonderful improvements were made to medications as time when by. I can’t remember when I successfully made the change from oral prednisone to a new drug - Becotide. I do recall the transition took two years. I know I would not be here to tell my tale without terrific support from my respiratory specialist and the medications he has prescribed over the years. These days I take Seretide and Atrovent. Ventolin and prednisone are reserved for when I get a cold.  My last hospital admission was after the dust storm in 2009 – I was very wheezy. The admission before that was for a collapsed lung in 2003.

It was some time during the late 1980’s when I realised I had COPD. At this time I was very busy successfully holding down a stressful job as a journalist reporting on the property market. There was always a deadline to meet and life went on pretty much as it did before. Eventually I became a freelance journalist, working from home, primarily, for the best property magazine in Australia.

I did join a respiratory support group in 2006. I thought I might be able to help someone. I am secretary/treasurer of SWITCH at Bracken Ridge, a north Brisbane suburb. Our group is small and dwindling, as various members have died and we are not getting new referrals. But we soldier on.

Today I am 71 years old. I never ever thought I would live this long. I don’t think I would have done so without the wonderful support from my dear husband Mick. We retired in 2000. Mick and I live in a high-set house at Bracken Ridge. I do my fair share of the cleaning and vacuuming (with a Dyson); I get breathless but I just stop for a while and go back to finish the task later. I cook most of our meals and we share the washing up. These are simple tasks, but I am so proud of being able to do them.

We pursue our hobbies – I love reading, needlework, photography and quilting. I am treasurer of our quilting group and have almost finished my fourth quilt! We are fortunate in being able to go away on holidays and last year drove to Longreach and Winton. In 2009 we went to O’Reilly’s for a week and did all our favourite walks in the rain forest. I have to walk very slowly uphill, and rest frequently, but we achieved all our objectives including Moran’s and Elebana Falls.

We count ourselves as fortunate that we are able to enjoy life to the full, but Mick had a nasty health scare in 2000. I don’t think my medical condition has stopped us doing anything at all. My one, small regret, is that I was unable to have children because of my lung disease. But life has a way of offering compensations – not many women can boast having two careers, something else I am very proud of. 

I realise that my margins between good and bad health, are very small. I feel my health is a bit like walking on a tightrope, where one slip could kill me. But I have had a wonderful life and I am far too busy to die just yet. We still have a bucket list to work on! We are very, very lucky and look forward to having a bright future.

The combination of tobacco smoke, agricultural fertilisers, dust and industrial chemicals can be a deadly combination as Daryl found out when he was told he had emphysema. His approach to his condition is to ‘make the most of what you have, and make my lungs work’.

 Hi, I am Daryl Rogers, I live in Pakenham Victoria, with my wife who is my carer. It all started when I went to work back in 1958, I started smoking, which was the “in” thing at that time because nobody knew then what the consequences would be later in life. Smoking and working in dusty conditions on a dairy farm, which also involved working with chemicals, caused my emphysema.

At the age of 18 in 1962, I bought a car which meant I could go further to get a better job, as I thought. I started working for an Agricultural Contractor, because I loved the outdoors. I was working with artificial fertilizer tipping bags of it into a spreader with the chemical residue coming straight up in my face. In those days there was no protection of any kind as it was an unheard of thing.

After approximately seven years, the company went into drainage in market garden country, which in this area is made up of sandy loam. Consequently I was exposed to more dust and chemical residue and this continued for about nine years. I finally wanted a change and went driving trucks carrying cattle for four years - enough said about that.

After that I started working for a local council in the road construction crew. This meant working in more dust and chemicals from road stabilizing products, involving cement and lime dust which I put up with for a number of years until I got sick of it. I applied for another position with the same council which involved walking the footpaths noting any broken and dangerous footpaths, and then organizing for these areas to be repaired. I got to a stage where I could not walk around the block without having a rest. At this stage I was thinking there was something wrong with me.

After a visit to my local doctor, I was sent to see a lung specialist who sent me off for a lung function test. The results came back and at that time, I was given the news by the specialist that I would never work again and I was told I had emphysema. I wondered how this was going to affect me and my family life. I found I suffered from depression, and anxiety, which I still suffer from today - if something goes wrong.

By July 1997 at the age of 53, my wife and I had three children and I felt it was too early to be giving up work after being a workaholic (as the saying goes). My first reaction was “Where to now? What does the future hold? What am I going to do now?” I did a bit of part time work, on a relief situation for a while until I couldn’t do that anymore either. 

I was rushed to hospital, having trouble breathing, but after a massive dose of drugs and great doses of oxygen along with some hours of pain, I would settle down. I would spend at least a week or more in hospital at a time. With some of the drugs I am taking, and after a bone density scan in September 2000, I was diagnosed with osteoporosis which is just another setback.

During a hospital stay during August 2002 I collapsed when being taken for a walk, as luck may have it my specialist was in the nurse’s station, and saw the whole thing happen. A short time later he came to visit me to tell me I would be going home and that I would have home oxygen waiting for me when I got there.

I was told I would have a rate of 3 litres for 15 to 24 hours a day which was a great tie. Sometimes you have to give a bit to keep yourself going. I find if the weather is stable, high temperature or low temperature, I feel reasonably well, but when temperature varies from day to day, that’s when I feel the worst.

Looking at living with COPD (as I am told it is now), you have to have an open mind.  The best way I have found to cope with it, is keep as active as possible, and try not to think you have anything wrong with you. I know we all have our ups and downs but look to the future with an open mind, do as much as you can and don’t sit around idle.

My wife and I still hook up the caravan, and go away for a month or more at a time, go where we want, do what we want, all in our own time. I know I get a lot funny looks towing along my bottle of oxygen in its trolley with hoses in your nose - but what the heck.

People approach you very carefully because they don’t know whether you like to talk about your condition or not. Once they realise you don’t mind taking about it they are very relieved. I feel the more of us that are out there, the more people are learning about the disorder – however if I didn’t have my oxygen I wouldn’t be where I am now. 

As far as my doctor and specialist go, we have a good working relationship. I know if my congestion changes, we have all agreed to change some medication and then I make sure I go to the doctor. The few times I have been in hospital since starting my oxygen therapy, has been my own fault as I didn’t change my medications early enough.

My daily life has changed but I don’t sit around doing nothing. My idea is to make the most of what you have, and make my lungs work for me by pushing myself to the limit. It probably puts me through a little more pain but I am not going to lie around idle. It is only natural that my family worry about me, but they have all learned to live with me and my problem which is a great help. My wife has put up with a lot, because everything falls on her whenever I need urgent attention.

Future wise I will continue on the way I am going for as long as I can. I have a loving wife, three loving children, and their respective partners, eight loving grandchildren so I have lots to live for. So to sum up, smoking was not the only cause of my illness, there were chemicals and dust as well.

Too often thought of as a condition that only affects the elderly, Darryl found out that a diagnosis of chronic asthma, COPD and Vocal Chord Dysfunction was to dramatically change his lifestyle. Now 55 years old he has successfully adapted to the necessary changes to his lifestyle.

My name is Darryl Summerhayes and I am a 55 year old male living in the Lake Macquarie area of NSW. I am married with three children, two grandchildren, two dogs and a bird. I have been unable to work for the past few years due to a severe back injury sustained in a head-on motor vehicle accident in 1987.

I was self-employed in the building/renovation industry when my family urged my wife and I to make a sea change, owing to my business increasing dramatically which was putting a lot of stress and additional strain on my body by having to work both on the job and in the office 7 days a week, just to keep on top of things.

So off we went moving from a new home at the base of the Blue Mountains in NSW to an old weather board home with water frontage and bush surroundings that required a considerable amount of renovation (but we didn’t mind as the home had a lot of character and potential). Once we settled in I tried to get a bit of work in the same field, but I found it very difficult to gain the confidence of the locals in an old country town. Then I was fortunate to gain the confidence of a few locals, and in no time I was pulling some good work.

Once again history was starting to repeat itself with the business beginning to get out of control again and my body and health starting to decline with more and more ailments. I was off to my favourite GP to hear some more good news. I was diagnosed with, High Blood Pressure, High Cholesterol, Hypothyroidism and Osteo-arthritis of the spine, (but far be it, to hear me complain) so it was down tools again.

Then after the 2006 storms in Newcastle, I was offered a position with a Queensland. building company to the insurance industry as a Project Manager, the work was good with the only tools required was a tape measure and note pad. Then early 2007 there was a massive hail stone storm in the Blacktown area, so off they sent me for five months, coming home every weekend. Coming close to the end of my tour a cyclone hit Mackay in northern Queensland, so packing the ute off I went on a 2000 km journey where I was until early October 2007. At this stage, I decided enough was enough, my health was deteriorating even further, and I returned home into retirement.

Well for the next 18 months or so I was able to complete the bulk of the renovations to my home with the help of a young but keen school leaver, even though I suffered severely by the day’s end I was able to have it done by Christmas that same year with the help of pain killers and scotch (not always together).

It was then time to slow down and regain my health and mental state, so I just pottered around doing a lot of menial tasks just to fill in the days, like cooking and housework as my wife is still working full time. It seems that the start of my major problems was when I finally decided to quit smoking (after about 40 years). On Father’s Day 2009 my wife, 13 year- old son and myself were celebrating the day with our other two sons. I had been feeling unwell over the previous few days, but this day was worse, it was hard to stay awake and when I was, my thirst was incredible.

With my wife being a type 2 diabetic for quite a few years, she decided to test my blood glucose level, the reading was that high that it didn’t register on her monitor. After a few more tests she rang the hospital who advised that I come in straight away. 

Their readings were also off the scale of normality, so after a couple of insulin injections I was released being diagnosed as having type 2 diabetes. This is not the end of the earth, all it involved was diet change, exercise and a small amount of medication.

I was just getting into the rhythm of my new life with a new diet and exercise regime and was feeling quite well when I was hit again. I had just finished mowing the lawns with the push mower (ride on had broken down) and was feeling unwell with chest pains and shortness of breath, so I had a shower, tested my blood glucose and ate some lunch and rested for the rest of that day.

The following day I was still complaining (not that men complain) about my chest pains and shortness of breath, so my wife rang my GP for a consultation, which I was given that morning, within 5 minutes of my consultation he had me on the bed hooked up to heart monitors then proceeded to call for an ambulance to rush me to hospital with a suspected heart attack.

After spending eight days in a hospital bed, being pushed, prodded, pierced, probed, jabbed and jeered I was released from hospital having had all the tests known to mankind for the heart, but to the medical profession there was no problem with my heart, even though nearly every night I would have these intense pains over the heart area requiring anginen tablets and morphine to release the pain, but still no inkling as to what was really going on.

I was released on the Tuesday afternoon at around 4:00 pm with the typical letter to my GP stating my stay in hospital, what they found (or couldn’t) and to take 2 aspirin and call me in the morning scenario. By Wednesday evening I could hardly breath, I tried to lie down, but that only made it worse, so I ended up spending the night sitting upright in the lounge chair watching television (if you can call it that in the wee hours of the morning). Thinking about it afterward I know I should have called an ambulance but stupid me didn’t want to disturb my wife’s sleep as she needs to be at work on Thursday’s at 6:00 am for Payroll.

She contacted my GP when he opened on the Thursday and he basically saw me that morning when my wife could arrange a substitute to cover her at work. My GP gave me a referral to a respiratory specialist; she then returned me home and made me as comfortable as possible, then returned to work as there was nothing she could do for me at home.

My wife contacted the respiratory specialist, and surprisingly, made an appointment for that same afternoon. On arrival at the surgery the confusion started with them having no knowledge of her making any such appointment.

Well!!! You could imagine her distress having to watch me sitting in a chair gasping for every breath I could take, as well as try to get through to the receptionist that she had made the appointment for this day, and her saying that they do not have any such record, so it was agreed that what had happened  was in all the confusion and the way the referral was typed my wife inadvertently misread the form and made the appointment with the GP and not the respiratory specialist, an easy mistake through teary eyes.

So to cut a long and boring story short, the specialist shuffled his schedule and saw me straight away, firstly diagnosing a severe lung infection. After having more and more tests it was established that my condition was a combination of chronic asthma, COPD and VCD (vocal cord dysfunction) at this stage (but this I feel is about to change).

Up until then both myself and my family had never heard of this disease, so naturally they all went to the internet to find out more. Do you realise how much information you can retrieve from just entering one basic word? Anyway they were all a bit dumbfounded as to how it came about all of a sudden, but have all read and understood the symptoms and can provide basic assistance for me when and where required.

I was forwarded on to the Cardio-Pulmonary Rehabilitation Unit run and operated by Hunter New England NSW Health, which is headed by Jenny Darcy, Respiratory Rehabilitation Nurse, whom without a doubt, is the most caring and passionate member of the medical profession that I have ever come into contact with. Jenny also has some of the most dedicated and professional staff under her banner who are an absolute joy to attend there lectures and exercise classes, where even the majority of the staff also suffer from or deal directly with there own form of respiratory and other problems.

As a result of the support and dedication I decided to start my own self-help support group called LIPS (Lungs In Poor Shape) to try and keep the motivation and interest for self-help as well as a social gathering of fellow air suckers like myself, which is slowly turning out to be a successful little group.

It is now just under 12 months since I was diagnosed with COPD and at this moment it does not seem to have got any better. If anything I feel that it is a little worse, but I am slowly learning to pace myself a little better. It all takes a while to understand that what your mind says you could do your body now says ‘bugger off’. I’ll do it my way and in my own time!

My life has been once again thrown into turmoil and confusion with the onslaught of COPD, VCD, and asthma, as to say that family events are now planned around my accessibility and comfort; which is nothing to be sneezed at, but at times it is extremely disheartening, embarrassing and mostly upsetting, to be unable to participate in many activities, but as long as you can still get a cuddle at the end of the day, it makes it all worth while.

These diseases have caused some very severe restrictions to my former life style, like going for a long walk, now I can only manage quite short distances and need to use a walker to aid my breathing and I am afraid to venture out alone in case I experience problems.

This, plus a multitude of other issues like general maintenance around the home, driving, (something I once used to really enjoy, but now it feels like it’s a chore), camping, golf, heaven help - even sex, etc. Even down to the really bad days when it is painful to shower and dress, which is where my loving wife comes in to action once again and provides me the assistance that I require.

Some things that I was always aware of but took for granted was disability access; as an example, my wife and I decided to see a show and stay in Sydney for a couple of days for our wedding anniversary back in October. The drive down was fine, naturally, until you hit the city, we found the hotel and parked the car. Keeping up so far. Now we start, there was no disability parking available, we had to walk up steep ramps to the lift, (no lift to lower levels) once at street level we had to contend with the lift being share with a courier company. So off we went dodging parcels, drivers and vehicles only to exit to the street behind the hotel (sorry, forgot to mention no access direct to hotel lobby).

When we finally made it to the front door of the hotel (lugging suitcase, overnight bag and anything else my wife could pack) and me in tow puffing and panting and sounding more like Darth Vader from ‘Star Wars’ ever minute, only to find, you guessed it no ramp and no bloody help. OK so we made it up the 6 or so stairs to where we were told if we had come through the bottle shop next door to the parking station, the share a goods elevator with the public bar that shares the hotel foyer. Buy the way this is the NSW Rugby Leagues Club.

Still with me!! Off to the room we went, naturally with no help. The room was nice, small, but very clean, but a bit stuffy which wasn’t a major problem as we had rested and I had regained my composure and breath. So we decided to go for a walk leaving the air conditioner on so we could have a lie down after our walk.

Well guess what!  The air conditioner didn’t work properly and unfortunately the way the laws are now, you can’t even open the window on high rise. Anyway we were given another room with little help from the staff (but anyway we now know where to never stay again). The walk to and from the theatre was uneventful, although very tiring and the show was well worth all of the earlier issues. As a mention though I needed to go to the bathroom once the show had started so as I stood I had one of the ushers on my arm helping me to the door, the two ushers on my return. Just shows you the difference of people that have a position, and those who take pride and compassion in their position. 

I know this would sound very morbid to most, but I am in the midst of writing instruction sheets on the maintenance and use of things like the swimming pool, spa, lawn mowers, change tap washers, maintenance of vehicles insurance details and so on, because I believe that my life has inevitably been shortened by the contraction of these diseases, whether they be from years of smoking or working in old and dirty buildings with the dust and asbestos (and yes you guessed it ‘no mask’) floating freely through the air.

You can remember what we were like back then with ‘Lungs of Steel’ now it is ‘Lungs of Mush’. Anyway what I am trying to convey to you is that these problems have seriously reduced my quality and undoubtedly my quantity of life. So suck it up and get on with it, and don’t forget there’s always someone that is worse off than us!

Struck down with COPD at the age of 14, Virginia has coped with health problems for many years but still enjoys life. She has been an active member of the ‘Better Breathers Group’ in Rosebud, Victoria, for over two years and is a good example of a strong spirit overcoming indifferent health.

My name is Virginia, I am 59 years old, and I have had Lung Disease for 45 years. I was first diagnosed with Lung Disease in 1966, when I was 14 years of age. I still remember the day like it was yesterday.

It was a sunny day in winter, when I arrived at the front steps of the Alfred Hospital in Melbourne, I was to undergo a Bronchial gram. I had developed a heavy cough which did not seem to respond to most anti-biotic’s, so I was referred to the Alfred Hospital for further investigations. It soon didn’t take long for me to realize that I was not going to enjoy this particular test. Back in 1966, you weren’t given a sedative or an anesthetic, they just held you down and got on with the job at hand. I still remember the technician’s complaining about having to do this particular test to someone so young, and that neither one of them had ever preformed this type of x-ray on such a young person. That particular day I underwent more testing for various things, none were very pleasant.

The diagnosis came in and my mother was informed that I had Bronchiectasis in the lower lobe of my left lung. The whole thing was a mystery, how did this young child develop a Lung Disease. We were informed by the Doctors, that it had developed over time, by having continued Lung Infections. Although I used to have colds like any other child, my mother never recalled me ever having Lung Infections. As the years went on, and I grew into an adult, we all assumed that it had developed because of second hand smoke, due to many members of my family who did smoke in the home throughout my entire childhood. Fortunately for me I never smoked.

By the time I reached my late 20’s, I had Bronchiectasis in both lungs, and had developed Asthma. I just continued my life as I always did. I had Lung Disease for most of my life so nothing seemed any different for me. I was always short of breath, and had an embarrassing husky cough, and because I was so used to that being part of my life, I just continued on. I had always worked from the time I was 17 years until 47 years of age. I travelled the world, just like everyone else did, the only difference was that before I got on a plane, I would take extra medication to help with the flight. I also took extra medication and anti-biotics in my hand luggage just in case of developing an infection while away. Nothing stopped me from doing all the things that everyone else did, I would exercise within my means, and try and live a relatively normal life. I was a big believer that I was going to control this disease, and not have it control me.

I have now had to face yet another challenge in my life, nearly one year ago at the age of 58 years, I was diagnosed with Lupus and Rheumatoid Arthritis, two devastating auto-immune diseases. I suddenly realized something that explained my entire life, the mystery of the Lung Disease, in a young person who never smoked, was solved. I was born with the gene, which would develop, and compromise my immune system, which would make me more susceptible to infection.

I will again conquer and control this disease, and I will not allow it to conquer and control me. 

Dinah’s story is typical of the many ex-smokers who contracted COPD. She describes her journey to diagnosis and then how she copes with the trials of everyday life. Like many other sufferers Dinah has found reassurance and support by joining her local self-help Breath Easy group.

Hello my name is Dinah, I'm divorced and live in Ringwood, Vic, with my daughter Amy and grandson Ethan for now. I haven't worked for a few years now as I've had a few illnesses other than COPD.  I'm 18 years clean and sober and I had an aneurism on the left side of my brain, so out of all of that, I needed to learn to walk again which I did with the help of my kelpie dog but I still have a small problem with my left side. 

My last job was working for the Croydon Council as a child carer for 10 years, I had children before and after school and I had 4 at home.  I really loved that job as my little ones had special needs. Then illness started with all of this - I smoked, I stopped when I was ill with the aneurism, only slowly picked them up again (I'm not proud of that) until I got sick and was told it was COPD.

I went to my doctor as I had a cold, my symptoms were high temperatures, pain around my neck/throat, a cough and a lot of phlegm (this was around June 2008).  I also was a bit short of breath and I had a slight ache around my chest. The doctor seemed to think I had Chronic Lung Disease and wrote a referral to Maroondah Hospital. I walked out of the doctor's surgery and I was in shock, scared and saying "what do I do now?" I went to my appointment and I had to have a CT scan done, breathing and blood taken for testing - all through this I was able to ask what they were doing and they nicely explained about all the tests and I was very grateful. As I was terrified, it took me two weeks to ring and make these appointments. Once it was finished I felt a little better. Now it was time to see what the doctor says.

It's March 2009 and Dr Howard has just confirmed I have COPD with early stages of emphysema.  I felt helpless, angry with myself, sick and shaking and I felt very trapped.

Here I am 57 years old and planning a holiday where I could go for long walks etc. Until all of this was explained to me I had no idea what COPD was. I was living on my own for a while then my daughter came to live with me as she couldn't afford a place of her own. When I told her about my diagnosis, she didn't know what COPD was, so I explained it to her and gave her a few pamphlets to read. She is very supportive and she drives me some Tuesdays to Breathe Easy where I do exercises.   We have a speaker who talks to us about COPD and things which can make life easier for us (usually a different speaker each time).

I also needed to see a clinical psychologist as I just wasn't handling myself well at all. All my independence was gone. I've never gone for my licence even though I can drive. My ex-husband whom I'm very close to and his wife and my son are all very supportive so we have been blessed.

I have not been smoking now for nearly 4 years - a little too late and a long way to go. I was given help by the Maroondah Hospital - I went after physio when I was in hospital and doing exercises, it was suggested I see Julie who also is my district nurse and I was breath tested every visit and I went to her for about 4 weeks and that was enough for me - I don't need to see her anymore.

Once I was told I have COPD, I really needed to read up about it. I don't have a computer so my ex-husband Alan got the information for me.  Again my family has been very supportive, I've been living with my daughter and grandson who is five and he's an incredible little man. My daughter and grandson will be moving out soon and I will be living on my own which is pretty scary. It's not been easy for me but it hasn't affected my daughter in any way as she works in the hospitality industry in a hotel - she's able to do this as I'm home to look after Ethan my grandson.

How do I live with COPD? - that's a hard question because it's hard work, trial and error asking questions a thousand times over. My family know when I am having a bad breathing day, they understand and are supportive. I live a day at a time - I have learnt once again to ask for help, I've had to swallow my pride and I also sometimes feel like I'm a burden for my daughter. These thoughts come when I'm low and sick but I am learning to cope. Breathe Easy is excellent, I go along, do my exercises, have a laugh and enjoy other people company.

COPD is restricting me in a few ways - I don't have a driver's licence and I've always walked everywhere. So walking, house cleaning, gardening, things I used to take for granted, now I'm having to do a rain check. A day at a time I am working through things - what I can and can't do - with a few tears I might say. As long as I keep it in the now and have an open mind - I'm hoping for a quiet future - not boring.

The patient is the only person at the coal face 24/7 to know what is continuously happening to him. He or She must be the Project Manager to co-ordinate doctors, specialists and other medical personnel.

Doctors only offer advice, but the decision to accept or not is solely that of the patient. I  must never be afraid to question health professionals, ask to have anything explained that I don’t understand, and seek a second opinion if still dissatisfied.

For a patient who has been twice hospitalised with a common cold, and been advised to avoid contact with infected people, doctors’ surgeries represent areas of risk with coughing and sneezing patients. on occasion I have been kept waiting for over an hour past appointment time in such potentially hazardous conditions.

I am unimpressed when specialists retire without informing patients. Twice I have wasted my time and energy by teeing up for an appointment, only to learn the specialist has retired.

Variable Positive Air Pressure Therapy

To ensure I woke each morning, I was advised in 2000 that I needed to go on a VPAP machine at night set at a high pressure to act as a ventilator. I was initially devastated already being aware that a friend who had been prescribed a VPAP was unable to accept the therapy, saying he would rather die first. Soon after he did. I was unable to sleep and the VPAP caused unpleasant complications by day and night contending with the following reactions several of which remain today.

• My normal breathing pattern became difficult

• My eyes continuously watered

• I sneezed continuously

• My ears periodically popped

• Noise caused by air leaking from the periphery of the mask disturbed my sleep

• A lesion developed on the bridge of my nose

• The head strap caused a rash to break out on the back of my head and neck

Medication temporarily relieved the symptoms which took ages to subside. Normally patients are not permitted to adjust the VPAP parameters, however, i was allowed given my technical background. Eleven years later I am still using the VPAP to synchronise in with my normal breathing pattern something a specialist would not have had the time or opportunity to do.

Back Brace

As a legacy of an accident I suffered as a child I have need to wear a back brace to stand on my feet. Unfortunately it inhibits my breathing by applying pressure to my diaphragm so a compromise has to be made. A specialist prescribed a brace moulded to my body that proved useless. It transferred pressure from my abdomen to my chest that unacceptably inhibited my breathing. From that I learned that doctors can be poor engineers and are not always endowed with common sense.

Diet

One’s body requires a healthy body to fight disease, and I have acquired it from advice from doctors and dieticians in hospitals. I have kept religiously to the low fat diet of mostly fish and poultry and vegetables. Fresh food and no salt added in cooking or to meals. I attribute the fact that I take no medications to that diet. I have the blood pressure of a young man and no cholesterol.

My name is Maynel Teresa (Tess) Lindsay. I was born in 1926 making me the age of 84 years. I believe I suffered ‘bronchitis’ frequently as a small child, but recovered when I commenced swimming at about the age of six, living in close proximity to the ocean at Maroubra, where my husband and I now reside.

However when I was 24, I again had ‘bronchitis’, and then at aged 42 - ‘Pneumonia’, which was overcome by a new strain of Penicillin to which I am now allergic. My husband and I have never smoked - but as most people of our generation, we became passive smokers, being exposed in work-places, public transport, shops - well, just about everywhere as smoking was avery popular habit.

Fourteen years ago we moved away from the ocean, but only to Randwick, to a very busy, traffic-congested street, where I suffered ‘bronchitis’ continually for two years, and eventually a serious case of ‘Pneumonia’. I was hospitalised, and cared for by a new specialist, who prescribed ‘Ciprofloxacin’, and diagnosed ‘Bronchiectasis’ and possible ‘Emphysema’. Now my illness is chronic, but with the regular visits to the same specialist, using the same miraculous medication when necessary, and belonging to the amazing ‘Easy-breathing’ group, conducted by the Lung physiotherapy department at Prince of Wales Hospital at Randwick, who monitor and assist us to keep well - I enjoy a normal life-style - for my age! Also we moved back to the ‘wild and wooly’ Maroubra! I still swim, but gently in the ocean rock pool, and not as frequently as I would like - just when the weather permits.

When I become ill, I feel desperately down-hearted, but bounce back quickly, with all of the above assistance, and the care of my wonderful husband, who suffers lung disease to a lesser degree, but is also kept well by regularly attending the ‘Easy-breathing’ walks and exercises. The Respiratory Care Team - at P.O.W. is invaluable to us, assisting by phone, or even visiting the home if required, and liaising with the specialist.

Nursing was my career, and I loved it. After our children were old enough, I returned as an R.N. to nurse the mentally handicapped and Geriatric. I retired from that at the age of 67.

We have four children and thirteen grandchildren, six of whom, we help - a lot!! We look forward to many more years. Thank you for your kind interest and your wonderful work.

Reg who lives in Rosebud, Victoria, and is now aged 83, has a similar story to tell - he served in the Royal Australian Navy and led an active life until he contracted emphysema. He recounts his difficulties and his enthusiastic involvement in the local Better Breather Groups.

I have been happily married for 54 years to Christine, who is now my official carer.

When young I was active in sport, swimming, diving and football despite asthma. As I grew older the asthma was not a problem, just an occasional seasonal attack. After my Navy Service I enjoyed working in the building trade as a carpenter, travelling round Australia, But in my 40’s I started to experience difficulties with breathing, shortness of breath and coughing. This encouraged me to quit smoking, but at that time there was little help available for lung disease and limited medication also.

This period was not easy for us, both working and raising 3 teenagers, and we had little understanding what was going on. The Doctor had no answers and he did not think a specialist could do any more than what he was prescribing. I decided to change my occupation to retail which was less energetic. As the years passed, and having a Pharmacist for a wife, I always had the best medication available and also the top of the range nebulizers, which was most helpful but I continued to experience sudden, severe attacks of breathlessness and numerous chest infections. This was of course worrying and frustrating. Then, in my early 60’s, after tests, I was diagnosed with severe COPD, as it was named then, but still there were no explanations or advice about how to handle it. We just had to manage as best we could. My Christian faith was strengthened at this time and both Christine and I received strength and peace in our difficult situation. 

It was not until I was almost 70 that I found a Respiratory Specialist who did extensive tests at the Hospital and gave me the bad news on the condition of my lungs but said “We can help you.” There are no words to describe the relief that came over us as we heard those words after years of struggling alone. The Specialist reviewed my medication and referred me to a specialist Physiotherapist, who, in a few visits, taught me breathing techniques and other strategies to cope with shortness of breath.

Christine and I attended a short but useful teaching course run by the Physiotherapist. We were invited to attend a support group and we saw how this could benefit a lung patient. We learnt about Pulmonary Rehabilitation and although we lived in Rosebud I was happy to travel to Melbourne to finally have some help and encouragement on living with COPD. There was no Pulmonary Rehabilitation available on the Mornington Peninsula and I began to advocate for a Course. That was 13 years ago and now there soon will be four Peninsula Health sites providing this service for patients.

With the help of the Australian Lung Foundation my wife and I decided to start a  ‘Better Breathers’ group in Rosebud . Being involved in this self-help group has brought us in contact with other patients and carers in similar circumstances and by sharing experiences we help one another. We have made good friends and laughed together and had fun.

As everyday tasks have become more difficult I learn of the strategies to manage, pacing myself and avoiding stressful situations. With good planning we enjoyed a 7 week holiday in England and did not go near a hospital or Doctor. But as the disease  has progressed we have acquired many aids to assist in daily living, shower stool , bathroom and toilet rails, hand held shower hose, trolley table near my chair, long handled emery board for feet, pick up gadget which saves bending down when you drop something, etc, etc, Now that I have trouble walking any distance we have a small electric scooter that breaks into 4 pieces and Christine can lift these into the boot of the car and we are able to go out together.

It has been important over the years to maintain an exercise routine. I enjoyed walking and even now I realize how vital it is to keep up with my daily exercises that have been put in place for me by an Exercise Physiologist. There are restrictions on my life but we have kept up our interests in the family, the church, our home and garden, community activities and meeting with friends. We are very close with our family and they are all involved with my problem and their caring and concern shows their love and they are always happy to lend a hand when needed. We look forward to each day, counting our blessings.

My advice: Learn all you can, Have a good relationship with your GP, Have an action  plan from your GP, Attend Pulmonary Rehabilitation, Join a support group. Join the Australian Lung Foundation(we need more research on lung disease) and keep smiling.

Jeanette is the wife and carer of former farmer Daryl who was diagnosed with emphysema in 1997 and told he would no longer work. The realization that life would not be the same after this diagnosis is vividly retold by Jeanette.

After hearing the diagnosis I felt our world was ending. Life on the farm Daryl was raised on and his parents owned since the start of the 1900s had to go. The first year was hard on all of us, once a healthy and happy husband was know unwell and depressed.

Whatever was in store for us, our three children were a big help and comfort to me. Old enough to help pack and move into Pakenham, Daryl found the move very distressful as did I. In the early days of the illness we had several calls for the Ambulance, Daryl used to panic when he couldn’t breath making things worse. Once we learnt to manage it better, things improved slightly.

I think the worst side effect to the disease is the depression and mood swings. I can read the signs now, if we are in for a bad day Daryl is quite and moody he thinks that it’s not worth going on; I just have to try and work him out of it.

I have been retired for 17 years and I am on a Dept. of Veterans’ Affairs pension. During my working life I served in the RAN and saw service in Vietnam, drove trucks, worked in Clubs and Hotels and retired whilst working for the Maritime Services Board.

I was a very heavy smoker from the age of 18 years of age (but have been smoke free for the past 4 years) and have never touched any other drugs. My first indication of my declining health was of pain in my leg calf muscles. On advice from my Vascular Surgeon I have had bypasses on both my legs. About 15 years ago I started to get very short of breath and became tired and lethargic, so my GP sent me to a Specialist and after many examinations and x-rays I was diagnosed with emphysema. Over the years I have been hospitalised many times and on one occasion was placed on a ventilator and spent five weeks in intensive care, and when I was discharged three years ago with severe COPD I was placed on oxygen 24/7. Being on home oxygen one has limited opportunities to carry out activities that was once not a problem ie Gardening and Home Maintenance.

I was very fortunate to have a Specialist who would give me good time in consultation and sent me for many tests both locally and in Sydney. My last stay in hospital I was attended by another Specialist who really impressed me with his manner and knowledge of COPD and have since transferred to him. He recommended that I do a Pulmonary Rehabilitation Programme at Shell Harbour Hospital. When I decided to do the programme I was dubious as to whether I would do it as I thought my condition was too far gone to make any improvement, but I was amazed at how much I felt better after 2 weeks with my breathing and general feeling. I recommend anyone with COPD to do themselves a favour by doing the course as soon as possible.

Margaret is 72 years old and she lives with her husband in Primbee, on the South Coast of NSW and talks earnestly of her now limited future following the diagnosis of COPD. 

I am independent with all my self care and am not a carer for anyone. I have had various jobs throughout my working life including driveway attendant and a teacher’s aid for the disabled. I am a former smoker and I was initially diagnosed with COPD 2 years ago by a new GP when I presented with constant coughing which I put down to being asthma related.

I was initially very scared, numb and devastated with my diagnosis. I had never heard of this disease, nor had my family who responded with anger and frustration. The GP referred me to the local respiratory clinic at the hospital which has been great and I was very well supported by the family. I have been very satisfied with the information that was provided to me by my Specialist and his team which he referred me to. This has significantly helped me learn about my disease. I am living one day at a time with my COPD and it has affected my life as I have been forced to put a lot of social activities on hold and this has obviously impacted on my family life. I am still trying to learn to live with my COPD and I know that with all the help I am getting with the Respiratory clinic I will improve. 

I have recently completed the Pulmonary Rehabilitation Programme and have been linked in with their support group. I feel that there are many restrictions on my life including not being able to do the housework anymore, trips to the shops are not pleasant anymore, I am not able to have my family come for Christmas or Boxing Day and I feel all my glory days are gone due to fatigue. I am very worried about my future and I feel that it is not too good - I am afraid.

To Evelyn’s surprise, Graham agreed to participate in the 12-week Living Life program, which involved physical activity and a diverse range of information sessions. Graham explained: “It really changed my life. Of course I am still a bit grumpy sometimes, but the whole experience has taught me to look at life differently and to realise I can make small changes to my life that can make a big difference.”  

Graham and Evelyn both agree that his outlook on life deteriorated when he became ill with emphysema in the 1990’s. Prior to his illness he had been a fit construction worker, able to lift, climb ladders and work all day. Slowly though as his health deteriorated and he put on weight, Graham became more and more frustrated with his physical limitations and his moods reflected his disappointment: “I just let myself go physically and it had a big impact on my mental health. I agreed to go to Living Life because I had become frail and depressed.” 

The Living Life program showed Graham how small changes could improve his physical, emotional and mental health. Each week he participated in an exercise program, which became more intense as he became fitter and more confident. He loved the talks, which covered issues such as falls and falls prevention, posture, aromatherapy, healthy eating, exercise and services to support him. One talk on how to develop a more positive attitude to life had a profound effect on Graham, ‘opening his eyes’ to what life had become.

He began the program able to walk 330 metres in 6 minutes. After 12 weeks he could walk 450 metres in the same time and breathe more easily as he walked. Living Life instructors also introduced participants to a range of physical activity options to pursue once the course ended. Graham and two other men from the program now attend a local gym each week. The Ringwood East couple are enjoying each other’s company much more these days and Graham has also become a mentor for new Living Life participants, speaking at sessions.

Evelyn said: “Strange to say it about a man his age, but I think he has blossomed, he has come back to life again.” Since the ‘Go for your life’ Living Life program began in 2006, 12 courses have been held and 91 people ranging in age from 60 to 88 have participated. Melbourne University is currently studying Living Life to determine the health and well being benefits of the program. The Villa Maria Society is currently working on a resource manual for other organisations to implement Living Life programs to help people to lead more active lives.

Zyban tablets seemed to do the job ‘cos in two months I was a non-smoker. Hoo-bloody-hoo-ray! We soon moved house to one with lots of steps and found that my breathing was no better. So back to the GP who sent me to my Specialist (as they do) who sent me off for more tests including X-Rays. These revealed some unwanted results which led to a right lobectomy (removal of part of right lung). All nasty and a painful several weeks.

It was then that I was introduced to a marvellous team of people who helped to modify my thinking on how to manage my poor breathing and to manage my daily work load. Luckily my wife/carer and myself are retired so we don’t have to be at the office or where-ever by a certain time. However, the household chores, gardening , shopping, still have to be done so we had to work out how to do the  jobs without getting exhausted doing them. For example, it now takes a little longer to do the mowing. But hey, who cares! We can do some tomorrow if we can’t finish it today. This team of qualified, dedicated medical professionals are great to discuss things like breathing control with and they do know it all and are certainly compassionate.

This disease not only makes breathing difficult but also weakens (in my case) the immune system, which makes me most susceptible to any colds, flu or chest infections going about the community. I get very cheesed-off with the frequency of these bouts of ill-health but at least I’m still here and able to talk about it. I worked as a  Speciality salesman for 25 years and in so doing, along with many of my colleagues, smoked cigarettes during all of that period and more besides. I don’t know that I have been informed that I had COPD. It has been more of an assumption that bronchitis, asthma etc, all come under the heading of COPD. Anyway, the treatment for all of this is by controlled dosage puffers. They have to be taken twice a day and offer relief of the symptoms of COPD, mainly shortage of breath.

My GP and Specialists have all been marvellous in their management of my disease and fit me in at an hours notice if needed. Although our lives have changed quite a bit because of my illness we are still quite active within our community with lots of social get-togethers, entertaining etc. My wife Pat is treasurer of a local Branch of an international Club. I play music in three different bands locally and we’ve learned to live alongside the illness which some people treat as a death sentence. With the weekly maintenance class I attend, together with a fair amount of exercise throughout the week, I believe we have lots of years left in the old dogs yet. With the help of your health professionals, exercise and a healthy diet I believe we can have an enjoyable and fulfilling  life in spite of COPD.

For a number of years “I knew something was wrong” with a daily awakening of coughing spells, bringing up phlegm, and then facing ever increasingly difficult days of trying to do things without running out of breath. I refused to see a doctor about this because I simply did not want to know.

It was the after effects of the 11 September 2001 Twin Towers terrorist attacks that made me realise that life was too short, and I determined to get my ‘problem’ looked at by my local GP. Initial examinations led him to refer me to a thoracic specialist in January 2002. I was diagnosed with COPD.  Emphysema and chronic bronchitis were the 'nasties', but I had chronic asthma thrown in as well.

Since that initial diagnosis, I have since found out I have an Alpha 1 - Anti Trypsin deficiency which means I inherited my emphysema. I was also diagnosed as having G.O.R.D., Oesophagitis, and Fibromyalgia across the back and ribs. All of these conditions of course compound the pressures on and in the chest and lungs.   

Unfortunately my conditions were not fully explained to me at the time or if they were, I didn’t listen and I certainly did not put it all together. I thought I could recover in a few months’ time. How wrong I was. Over the next few years, I very quickly learnt about my conditions and undertook pulmonary rehabilitation, followed strict medical and dietary regimes, and maintained quite a vigourous daily exercise program. These actions certainly improved my quality of life and although I knew my combined conditions would always get worse, things started to look good for once.

However, in 2007, my health started to deteriorate rapidly. My specialist referred me to a resident thoracic surgeon at the Prince Charles Hospital in Brisbane who he described as “a genius who just might have something in store that would be worth considering.” As it turned out, this doctor was about to trial a new technique for Lung Volume Reduction that did not involve cutting away the dead parts of the lung. It had never been tried anywhere in the world before and I was about to become the world’s first recipient of a Bronchoscopic Thermal Vapour Ablation for Emphysemaic Lung Volume Reduction (BTVA for short)

A short explanation of this procedure is warranted here to paint a picture of its significance for COPD patients in general. A BTVA procedure can only be carried out on patients whose emphysema is predominantly concentrated in the upper lobes of the lung. In my case, the top 10% of both my lungs were dead as a result of concentrated emphysema.

The procedure requires the surgeon to feed a tube down through the mouth into the dead portion of the lung, and then inject super hot steam into it. In my case, steam was injected for six and a half seconds. The steam shrivels the dead portion of the lung allowing the rest of the lung to move in and occupy that space. Same outcome as traditional Lung Volume Reduction surgery but without the long recuperative period and without the accompanying high mortality rate. 

The procedure was to be carried out in December of 2007. However, in the final battery of pre-op tests conducted, a sizeable black spot was discovered in an X-ray of my right lung. It was feared I had a cancerous growth in that lung, so the procedure was cancelled and the surgeon instead carried out a Bronchoscopy to determine the extent of the growth. He never found cancer. What he found was a garden variety pea had become lodged in my right lung and it was this that caused the black spot to appear in the X-ray and panic in the hearts of everyone. To this day, that is still the subject of much laughter for all, me included.

With that cleared up, I then had the BTVA procedure done in January 2008 on my right lung. I was kept in hospital overnight for observations only because no one knew what might happen to me (remember, this was classified as experimental surgery), and sent home the next day in bright and healthy spirits.  

Although the next 12 months required monthly check ups to monitor the BTVA effects, clearly my breathing capacity, my general wellness, and my outlook on life improved enormously as a result of having that procedure performed. That remains true to this day. In fact, subsequent events have convinced me that without the benefits of that procedure, I would not be alive today to tell this tale.

So what subsequently happened? By mid 2009, I had developed debilitating pains in both my legs which were getting so bad that I was having extreme difficulty in performing any physical activity. Certainly I was unable to walk 30 metres without tearful pains that forced me to stop. And it was not just the fact I couldn’t walk, but the knowledge that unless I maintained my pulmonary exercise programs, I would die. I was diagnosed with having an extremely high build-up of plaque in the arteries between the pelvis and the knee in both legs and this was stopping the blood flow to my lower legs. So in September and November 2009, the plaque was surgically removed from one leg and a by-pass graft performed on the other. A couple of weeks later I was back into my daily exercise regime once again.

Then, just as I thought I was on top of the world again, the G.O.R.D. and the Oesophagitis decided they were now going to play up. This became so severe that I was again unable to breathe properly and the chest pains became so severe that I eventually had to have Fundoplication and Laparoscopic surgery in June 2010 to relieve the condition. Whilst that has not completely removed all of the symptoms, I am nevertheless once again back to relatively good health.

From being absolutely shattered in 2002 and being unable to do even basic chores, through a series of remarkable medical interventions, adherence to strict medical and dietary regimes, dedication to exercise programs, and with tremendous support networks around me, I have been able to turn my whole life around.

Today, at age 63, I am now back working in a shop at least one day a week, I play competition League 10 pin bowls twice a week (6 games all up), I exercise every day in our home gym, I walk several laps of the length of major shopping centres at least twice a week, I assist daily with the maintenance of our family home and five acre block, and am now building up a small business making predominately baby’s clothing, novelty items and other associated products. 

That’s far and away much better than I ever believed or imagined was possible back in 2002.

My name is John Baddock, aged 69 and I live with my wife in Bathurst, NSW. As for having a carer, my wife Pam is my main carer along with supportive Pulmonary staff from Bathurst Hospital and my local doctor and a Respiratory Specialist.

My main occupation over almost 50 years was in sales and management positions in the food/grocery industry with companies such as Heinz/ Plumrose/Wrigleys/ Red Tulip/Edgell Birds Eye/ American Express/ Goodman Fielder and in later life part time positions with a Food Broker/ KR Darling Downs and Nestle.

Unfortunately, I did smoke cigarettes from about age 17 to 29, and it didn't help that my first full time job starting as an office boy at W D and H O Wills (for 6 years) included free cigarettes any time from the company. I am not blaming them as I was the fool who did the smoking, they didn’t force me!

I contracted pneumonia at age 29 and the doctor said you cannot smoke for 3 weeks so I didn’t restart. It is uncertain if smoking had any bearing on my lung disease as I was once told by parents/grandmother that as a child I did have severe measles which can cause damage to the lungs but doesn't necessarily show up until later in life.

In my early thirties, I started to have a lot of persistent coughs and felt off colour and generally unwell and often went to a doctor. Invariably, a doctor would say you have a chest infection, take some antibiotics and after a few days I would feel better and continue on. Rarely did I have days off work. Additionally, I had frequent bouts of ulcerative colitis which is quite debilitating and inconvenient as it makes you feel weak with weight loss.

This pattern of coughing increased as I moved into my late thirties/early forties and was often a case of embarrassment and inconvenience especially when at meetings with staff, customers and family. I was offered a significant work promotion which involved, if my wife and I accepted, an interstate move from our hometown of Melbourne to Sydney. I was sent for a medical examination by a company doctor who after a basic examination stated that I was fine and OK to accept this job promotion.

In Sydney Head Office of Wrigleys and with interstate and international travel, the coughing increased, infections increased and often it was a real problem at customer and in house work meetings. It was a particular issue at times when flying as I tried to not cough in such a confined space and having to sit for long periods of time in such close proximity to other passengers.

The coughing and lung clearance issues continued to worsen and finally at age 57 my local doctor sent me to an allergy specialist. Following some tests he said you have Bronchiectasis, and need regular lung clearance and antibiotics.

In 2000, we moved to Bathurst and I was referred to a local Respiratory Specialist who has treated me since then. In 2008, he diagnosed another respiratory disease on top of the Bronchiectasis. This is a more dangerous infection called M.A.C.(Myco Bacterium Avian Complex). This involved a hospital 2 week stay, on going daily medications for 16 months and regular physio, along with a risk that it can re-occupy. 

Six months later, it did and as well as the same treatment plus a bronchoscopy, I am on hospital only drugs for an indefinite period. The specialist has stated that having had it twice the risk of it recurring is high and is all part of an auto-immune deficiency  (along with recurring bouts of ulcerative colitis.)

I have been very satisfied with the medical assistance received by doctors, specialists, physios and hospital staff, especially a respiratory rehab. course run by the COPD dept. at Bathurst Hospital. I have become a volunteer in the 12-16 week course and enjoy assisting others with all types of lung diseases. Additionally, and with the assistance of Alison Croaker, Clinical Nurse Specialist and Gaylene Nelson, Occupational Therapist, in April 2010,we created a Bathurst Division of the Lung Net Support Group and it is called Bathurst Ezi-Breathers. As President we have an active committee and meet on a monthly basis with various guest speakers on different subjects but all related to COPD. We also played an active role outside the Bathurst Hospital on COPD Day Nov. 17 2010 and raised $500 plus for the Lung Foundation.

Pam and I have learnt to manage with COPD by accepting it and doing as best we can with the realisation that it is incurable but it is also manageable and the worst thing you can do is to sit around and do nothing. The future - who knows? But others should not give in to it and try to retain a realistic but positive outlook. Trust that this overview is of some help and encouragement to others with COPD.