April 3, 2014

Dinah Taylor

HOW DO I LIVE WITH COPD?

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.

My medication:

  1. A long-acting muscarinic antagonist – inhale one puff a day to open the airways and make breathing easier.
  2. An inhaled corticosteroid/long-acting beta2-agonist  combination medicine – inhale two puffs to assist as a preventative for asthma and severe chronic obstructive pulmonary disease
  3. A short-acting beta2-agonist (bronchodilator) CRC free – to open airways and make breathing easier.

When I am ill with a cold these are what I take: a number of specific antibiotics for infections and Oral corticosteroids (I follow a chart with these) – a cortisone supplement for treating many conditions with this medicine.

All the above is my COPD Planner which was done with my district nurse and doctor. All of this and so far no hospital. All the medical staff from my doctor to the nurses and staff at Breathe Easy and HARP are all fantastic – they tell it as it is honestly and at the same time explain what they are giving you and why.

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.