Maree’s story

Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis

It all started between 1962 and 1978.  My husband was a machinist but did many different tasks in his job in the mineralogy department.  It was never mentioned to me, but my husband machined asbestos sheets one third of an inch thick.  He would bring his dirty clothes home, shake them out and add them to the laundry basket with the rest of our clothes.

I often visited him for lunch as anyone was allowed into the workshop.  With no mask on, I would wait in a brick room whilst he finished his job.

In 2003, we moved house as the other place was becoming too much for my husband to look after.  In 2004, my husband went for a CT scan which diagnosed him with asbestosis.  He unfortunately passed away in 2006, not from asbestosis but from other complications.

In 2005, whilst my husband was alive but not well, I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF).  Of course I didn’t know what this was and I was too preoccupied caring for my husband to worry at the time.  I was also diagnosed with Interstitial Lung Disease (ILD).

For many years I was seeing a lung specialist and having many different tests.  At the end of 2010, I was diagnosed with asbestosis, which was a big shock to me.

In 2011, my son took me to America to see my eldest son and grandchildren whom I had not seen for about eight or nine years.  A few weeks after this trip, I was rushed to hospital where they found I had four clots in my lungs.  This hit me very hard, especially when in November that same year I was rushed to hospital again and was diagnosed with Pulmonary Hypertension in my lungs.  I thought I was going to die.

After this incident, the doctors recommended joining an exercise program.  Of course I said yes, anything to try and help me carry on.  It’s good to know you are not the only one with lung problems.  I was able to learn from others on how they cope with their problems and we tried to help each other.  I attended Easy Breathers twice a week for six weeks, but because of my many lung problems they wanted me to do a further six weeks.  I was then relocated to an exercise class closer to home.

I now attend these exercise classes once a week.  Sometimes I really don’t want to go, but after I have been, I feel better mentally and know that I have achieved something and certainly believe it has helped to keep me out of hospital.  Exercise, so I believe, is the best thing to keep you going.  Even just walking a little every day, otherwise the muscles get very weak.

I now have Pulmonary Fibrosis, ILD, bronchiectasis, Asbestosis, Pulmonary Hypertension and remnants of the old clots left.  I also had pneumonia in 2015.  My Pulmonary Fibrosis is no longer idiopathic because they know the cause as to why I have it – the asbestosis caused the fibrosis.

Sharing your personal experience with lung disease is a compelling and inspiring way for others to learn about and cope with their diagnosis. Your story may also encourage people to identify and act on symptoms they are experiencing, which may otherwise have been ignored.

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