Linda’s story

Idiopathic Pulmonary Fibrosis

It seemed like I’d been coughing for years.

My husband and I live in a small rural town in the wheat belt of Western Australia, about two and a half hours southeast of Perth.

Every year when the farmers started burning their stubble ready for a new seasons planting, I would start with a tickly cough that was exacerbated by the smoke from wood fires that the majority of houses used throughout our cold winters. My General Practitioner (GP) would give me inhalers but my cough would last until the warmer weather arrived.

At the end of winter in 2014, whilst working in admin at our local nursing home, a visiting state manager insisted I see a doctor as my cough was particularly bad. I was diagnosed with bronchiolitis and had no x-ray or medication prescribed, being told it was viral.  As usual, my cough settled as the weather warmed up.

January 2015 saw some very large bushfires in the region and our town was covered with smoke for a number of days, prevailing winds blowing it out then bringing it back. So, I coughed.

I resigned from work in that April, and, still coughing, saw my GP for inhalers again. We were planning a cruise and I didn’t want it spoiled by my continuous coughing. I also noticed that I was getting more puffed doing day-to-day activities and was pleased that I was finishing work so that I could focus on me for a change and start losing weight and getting fitter.

We cruised Asia – beautiful, warm, humid weather and my cough eased. Later that year we visited Queensland for my brother’s 60th at the end of June. By the time we returned, I was coughing again.

At the end of July I suffered with a raging temperature that had me shivering and shaking in bed with violent coughing.  I was diagnosed with pneumonia in both lungs and prescribed two courses of antibiotics, which didn’t change anything except the temperatures. So, it was another visit to the doc, different antibiotics and a question from me as to whether I should have an x-ray. This confirmed the pneumonia in both lungs, but nothing else.

Still, I was coughing quite fiercely. My husband insisted I see a different doctor and with instructions to “not to come back unless he was putting me in hospital”. Apart from the cough I was feeling fine, though worn out from coughing.

A High Resolution Computed Tomography (HRCT) scan reported emphysema and fibrosis. Not knowing anything about fibrosis I think I just focussed on the emphysema. I had never smoked, though grew up with parents who had been smokers. I was stunned that I could have such a disease. My “Dr Googling” on fibrosis also added to my disbelief. Surely they’ve got this wrong!

The specialist ran pulmonary function tests, checked for clubbing of my fingers and listened for crackles in my lungs. He totally ruled out emphysema and, after autoimmune blood tests showed negative, he suggested an open lung biopsy. At the time I told him “well, it looks like I’m a goner”, and he responded, “this is not cancer, I’ve seen patients die with this, not of this.”

It was only in the car on the way home it came to me that a lot of cancers are curable. Everything I had read on this disease told me it wasn’t.

In January 2016 a video assisted open lung biopsy confirmed Idiopathic Pulmonary Fibrosis (IPF) and I was referred to the advance lung team. I commenced a 12 month drug trial in April 2016 and found out in January 2018 that I had been on 50/50 drug and placebo, however the company decide to not go ahead with a further trial.

Since diagnosis I have only had mild progression, the cough is still my major symptom along with some breathlessness on exertion. I’m trying hard to lose weight (10kgs so far), and to exercise/walk daily. I may make it to the transplant list.

I have five beautiful grandchildren that I desperately want to see grow up. Though I can no longer play chasey, there is so much that I love doing with them.

In 2018 my husband and I celebrated 43 years of married life. We have travel hopes, not necessarily plans. The most important thing to me is my faith and spending time with my family. There is a lot of life I still want to be part of.

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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