Living with COPD - My Story
Whether you are a patient, carer, clinician or interested bystander, my hope is that what I share in my story about living with COPD resonates with you in some way.
That was then: My way to diagnosis and beyond
I was born in the 40s and like many of my generation, I was a regular smoker until I quit in when I was in my 50s. By quitting I believed that I had dodged a bullet because for eight years I enjoyed good health. In 2003 I began to experience subtle symptoms, such as shortness of breath, cough and chest congestion and infections, which belied the seriousness of the condition that I now live with. It wasn’t until my mid-fifties that I was told I had chronic obstructive pulmonary disease (COPD) and had lost more than 25 % of my lung capacity. At this point, no mention was made of rehabilitation or structured exercise in addition to medication, but I still felt well. I took the required inhalants and medication as prescribed so I thought I had stopped the disease in its tracks. I also still held a demanding and responsible job, and retirement was a distant vision. So much for blissful ignorance!
In 2011 I was forced to confront reality. My breathing became considerably worse and began to impact my everyday life. Things took longer to do and I worked hard to hide the worst of my symptoms from my greatest supporter and most severe critic, my significant other. Fortunately for me, my wife is far smarter than I am and insisted that I consult another respiratory specialist and plan an exit from work, enabling us to share what I had almost lost sight of, a now uncertain future for us to enjoy. With another breathing test result showing a 50 per cent loss of predicted capacity, I faced reality and my own mortality squarely in the eye for the very first time.
My advice: Knowledge is power, so educate yourself on your condition. And be prepared to question your doctors. It’s not just your right, it is your responsibility.
It was good fortune that the specialist had on his desk a copy of LungNet News, the official newsletter of Lung Foundation Australia. I took the copy and contacted them directly and was referred to the Royal Brisbane Hospital Thoracic Department where I soon after began pulmonary rehabilitation. For those not familiar with these programs, they typically comprise an initial assessment, a review of individual physical capability based on age or disability, followed by an eight week, twice weekly class including tailored gym exercise for an hour which is usually complemented by education sessions covering a variety of topics like lung pathology, medication, diet, breathing techniques and management of anxiety.
Following the pulmonary rehabilitation program, I kept up the routine and since then I religiously attend this class twice weekly. I believe this is one of the most critical factors in maintaining good health for people with COPD. Evidence points to exercise being more beneficial or effective than many prescribed medications. The other very important step during pulmonary rehabilitation is the preparation of a patient driven action plan based on a ‘traffic light’ system. The patient and their doctor establish green, amber, red, symptom levels with corresponding escalating levels of action the patient must take. In doing so the patient is empowered to take ownership of their own condition and immediate responsibility for their health. It’s all about listening to your body and getting to know it well.
I decided that now retired, I would become a member of Lung Foundation Australia and perhaps help out to give back. I was asked to help update the national data base for patient support groups. This enabled me to talk directly to other sufferers and carers throughout Australia. I learned a lot about lung disease in general, and came to appreciate the great work the people of this organisation do on behalf of the patients, carers and the community as a whole. I was invited to join the national CPAG (COPD Patient Advocacy Group) to support patients and carers to have a voice within the Foundation on goal setting and priorities.
My personal experience at the Lung Foundation opened my eyes to how much patients ourselves can bring a unique perspective to lung disease awareness, research and self-management by virtue of first-hand experience. My continued philosophy was that if I can assist in preventing any future cases of lung disease or through advocacy improve awareness, diagnosis, management and quality of life for my fellow suffers, then I consider my time well spent.
This is now: Taking part in shaping the future of COPD management
Twelve years post diagnosis and after completing pulmonary rehabilitation and commencing my volunteer work with Lung Foundation Australia, I can look back with some satisfaction at where I am and what I have achieved.
My COPD is stable, despite having suffered a couple of exacerbations over the last couple of years. I repeated pulmonary rehabilitation after my first flare up and continue to learn more about lung disease. I have completed a clinical medication trial and will continue to look for further tests or trials in which I can participate. I have also informally counselled others who approached me to help them better understand their condition and recalled my experiences on a similar journey of discovery.
I participated in the COPD Global Foundation Summit in France, which has the goal of driving worldwide change in the recognition, diagnosis and treatment of COPD. It was an honour to represent Australia at the forum. It was very interesting to see how COPD is managed in different cultures and nations.
My hope is that the COPD Global Foundation and its network of patients, carers and clinicians will develop into a well-respected, accessible resource with a voice that will reach the most remote communities to help, and indeed be the catalyst for change, in improving the lives and conditions of people with COPD, no matter where they are in the world.
My advice: Take Responsibility for Your Health
In retrospect, it would be easy but unfair to single out doctors for their often reactive approach to the management of chronic diseases such as COPD. More often than not, they have an abundance of patients, multiple critical cases and time pressures to deal with. As patients we must learn to help ourselves by demanding the time of our doctors, educating ourselves on diseases prior to consultations and preparing questions. We are generally not keen to hear bad news, the rationale being that if we need to hear more, the doctor will tell us all. If he does not then all is well. There can be fatal flaws in that belief. If we do not show initiative and purpose in our dealings with clinicians, or take responsibility for the management of our own health, we deserve the treatment we get.
My advice is simple. Knowledge is power, so educate yourself on your condition. And be prepared to question your doctors: it’s not just your right, it is your responsibility.
Ian Venamore was diagnosed with chronic obstructive pulmonary disease (COPD) in his mid-fifties. Today he is an active volunteer member of Lung Foundation Australia and chair of the associated COPD Patient Advocacy Group (CPAG).He also participates in international meetings with the goal to change the future of COPD recognition, diagnosis and treatment. He is a strong advocate for pulmonary rehabilitation and attends his gym classes “religiously.” He is also a firm believer in and proponent of patient education and self management.