June 30, 2014

Ian Venamore (COPD)

Whether you are a patient, carer, clinician or interested bystander, my hope is that you will find interest and relevance in my story about living with COPD.  Whether just diagnosed or living with COPD, these are the most important points as I see them:

  • If you have not done pulmonary rehabilitation – DO IT!
  • Educate yourself on your condition; knowledge is power
  • Share your concerns, a burden shared is a burden halved
  • Self-deception is as pointless as unnecessary worry
  • Be prepared to question your doctors; it’s not just your right, it is your responsibility
  • Get to know your body, if you listen it has much to say
  • Stay as active as you can, preferably in group exercise. The self-supporting nature of a group with a qualified trainer or leader enables you to gain confidence in a safe environment
  • If you live alone, join a support or social group with like souls
  • Test your boundaries; you might be surprised at your capacity to cope
  • Lung Foundation Australia is there for you. Their help and advice is free, take it.

 That was then…

I was born in the 40’s and like many of my generation, I was a regular smoker until I quit in when I was 50. By quitting I believed that I had dodged a bullet because for the next six years I enjoyed the good health that I always had.

I was always a very active person, a home handyman and I enjoyed outdoor activities and played sport competitively until in my 40’s. Unfortunately, my work life also exposed me to irritants in industrial plants, machinery and equipment.

Despite that, I guess my positive, cavalier or casual approach to life convinced me that I was somehow immune to lung disease and it was something other people suffered.

In 2003 I began to experience subtle symptoms which belied the seriousness of the condition that I now live with.  Like many, I had excuses and reasons for them all:

  • The shortness of breath walking up some hills – I must be out of condition or getting older. I don’t get as much exercise as I should.
  • The time it takes to recover a normal breathing pattern – My age must be a major contributing factor. I also need to lose a little weight.
  • That cough and the chest congestion I have that seems to hang on much longer after a bout of the flu or a bad cold – They must be symptoms of the newer more exotic virus-related infections that we hear of.
  • I seem to be getting more chest infections than I used to – I am travelling in areas of weather extremes and being exposed to varying levels of health in the general population. That must be the cause.

It wasn’t until my mid-fifties that I was told I had COPD and had lost more than 25 per cent of my lung capacity. If I was told it was progressive, I do not recall that part of the conversation. The specialist simply said as long as you do not smoke again, you should have many years in front of you. I guess I hardly listened or maybe I did not want to hear it.

In my mind I had already quit smoking six years before, so there was no need to do anything further!

Interestingly, no mention was made of rehabilitation or structured exercise as an adjunct to prescribed medication. I still felt well. I was taking the required inhalants and medication, 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!

Fast forward to 2011, when I was eight years older, and despite all my bravado and self -deception, I was forced by events to confront reality.

My breathing was now considerably worse and beginning to impact my everyday living. Things began to take longer to do.

  • Everyday activities like fishing, gardening, playing with grandchildren were becoming a chore
  • Planning physical activity became a necessary part of every day to avoid increasing tiredness and the need to rest
  • I worked hard to hide the worst of my symptoms from my greatest supporter and most severe critic, my significant other
  • Work responsibilities also began to bear down on me as the disability spiral kicked up a gear

Fortunately for me, my wife is far smarter than I am and, having grown tired of letting me believe that she saw none of this, insisted that I consult another respiratory specialist, do what I was told, and plan an exit from work. That would enable us to share what I had almost lost sight of, a now uncertain future for us to enjoy, one we had both worked so hard, so long for.

With another breathing test result now 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. I also set a firm retirement date.

It was good fortune that the specialist had on his desk a copy of LungNet News, the official newsletter of Lung Foundation Australia.  Almost as an afterthought, he referred to it and to the article on pulmonary rehabilitation as a “good idea”. I took the copy of the newsletter, contacted Lung Foundation Australia and the Royal Brisbane Hospital Thoracic Department. It is one of the facilities which runs the free structured program in Queensland.

Surprisingly it seemed to me that many clinicians were unaware, ambivalent or dismissive of the support and benefits available outside of their immediate practice areas.

I began pulmonary rehabilitation at the Royal Brisbane Hospital soon after, along with eight or so patients from a cross section of the community in terms of age and background. 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. This is usually followed by half an hour of plain language education sessions covering a variety of topics like lung pathology, medication, diet, breathing techniques and management of anxiety.

I could only admire and be totally impressed by the skill, commitment and care shown by this small group of health professionals.

Once the eight week pulmonary rehabilitation program was finished, the group was urged to ‘maintain the gain’ at weekly community group-based pulmonary maintenance exercise classes. The class I joined was held in the YMCA and called “Lungs in Action” – a Lung Foundation Australia program which can be found in communities right across Australia.

I religiously attend this class twice weekly and 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 most prescribed medications.  Invariably, I feel better after a class, no matter how little I feel like going on the days when my symptoms or poor sleep tell me otherwise.  It’s taught me not to be  too hard on myself. Living with COPD is a day to day proposition. I believe in doing what I can  and being honest with myself.  If I am breathless I always remember that in a while I will recover.

To those who have asked me if they will feel better after exercise class, I usually say that if they do not attend, I can almost guarantee they will feel worse.

The other very important step during pulmonary rehabilitation is the preparation of a patient driven, signed and documented action plan based on a traffic light system. The patient and their doctor establish green, amber, red, symptom levels or conditions with corresponding escalating levels of action the patient must take in response. In doing so the patient is  taking ownership of their condition and the 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 volunteer to help out and give back. Those I spoke to impressed me with their attitude and warm, open manner. The more I read about the Foundation through the newsletter and online, the more I felt drawn to the belief that I may be able to help with whatever skills I have to offer.

One person I approached was the now former director of the national COPD program. I was asked by her to help update the national data base for patient support groups. This was the sort of leg work I could assist with to help free up the staff to do more important work. It also 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 enable patients and carers to have a voice within the Foundation on goal setting and priorities. As patients ourselves, CPAG members can bring a unique perspective to lung disease awareness and self-management by virtue of first-hand experience.

I also came to share with others the need to promote the activities and goals of the Foundation and ensure that the passion, effort and focus these people bring to their work is recognised and appreciated. My personal goal at the Lung Foundation is simple – 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…

I am now more than 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 while travelling overseas.  Fortunately the exacerbations have not significantly reduced my lung capacity. The fact that I have travelled at all is testimony to the fact that there is life after diagnosis and my commitment to maintenance exercise and close attention to medication and preventative measures plays no small role in that.

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.

As a result of my work with the Lung Foundation I was invited to attend a summit in France of a relatively new entity – COPD Global Foundation, 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. Sadly, not all have a stable and peaceful environment, let alone the services and medical resources Australians take for granted.

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 and deprived of 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.

On Reflection…

Take Responsibility for Your Health

Earlier on, it seemed to me that many clinicians were unaware, ambivalent or dismissive of the support and benefits available outside their immediate areas of practice when it came to recognition and management of this disease. As in most things, education and awareness over time have played a significant role in addressing this.

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; meaning that as long as you are still walking, indeed have a pulse, you are ok. More often than not, they have an abundance of patients, more critical cases and time pressures to deal with. As patients we often buy into this by not demanding the time of our doctors, by not researching or educating ourselves on diseases prior to consultations and by not 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 seriously try to take responsibility for the management of our health, we deserve the treatment we get.

Smell the Roses

One other important outcome of all of my experiences as a patient or volunteer is the often very sobering realisation that usually there is almost always someone who is worse off than me.

My tendency at times is to feel sorry for myself.. I get that wakeup call every week if I need it when I confront at least two of my gym class mates who exercise whilst attached to oxygen.

And Carers are the unsung heroes. Only those fortunate to have them, usually a wife or husband, know the true burden they carry. Our diagnosis becomes theirs in many ways. They make sacrifices daily and the demands on their time and energy are usually cheerfully accepted. It is important to let them know just how much they are loved and appreciated.

This is my story. Whether you’re a patient, carer, clinician or bystander, I hope what I have shared resonates with you in some way.

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