Susan’s story.

During our second lock down my partner commented on my coughing and asked if I had noticed that it was getting worse. I said I would go back to see our GP.

I reluctantly went back to my GP feeling that I was wasting his time as previous tests had been reported as okay. This time, my GP mentioned testing for TB just in case, as my father had had TB before I was born.

My first sputum sample confirmed a Mycobacterium Avium growth. As did the third. My GP said he knew little about the condition as it was rare, so referred me to a Senior Respiratory physician who is also a senior lecturer at the teaching hospital. My GP said it was likely picked up in China. I made a list of all countries visited over the past few years; several could be suspect.

I saw the Respiratory Specialist in early November 2021. He suggested starting with a conservative management approach to which I agreed as I had read, and been told, how awful the drug side effects were. Plus, I didn’t feel particularly unwell, just always exhausted and felt I couldn’t breathe properly.

I have lost 5kg since that visit. I have episodic haemoptysis, chest pains and trouble eating. I manage my food intake by eating several small portions throughout the day. The more active I am, the more weight I lose. I walk the dog about 1.5km per day (used to be 3 -5km). I slow to a crawl on any incline. I remain active in the day, mainly gardening and housework. I was asked to do more sputum samples, but I can’t produce enough. I’ve had a chest x-ray for the haemoptysis, which showed hyperinflated lungs which was dismissed as just inflation through holding breath during x-ray. I’ve had a HRCT scan which shows mild bronchiolectasis. Bloods are always fine and despite findings, the HRCT, nuclear scan and chest x-rays are always reported to me as being okay.

We have private health insurance, but there isn’t anyone to see in this area. I tried asking outside of our area, but they wouldn’t test as I was coughing up blood. They also couldn't see me before my appointment down here, so I will wait until April (2022). I will make a list beforehand. I have never had a Lung Function Test. I intend to ask for one at my next chest clinic visit. I also want to be shown an appropriate Airways Clearance Technique as I believe if I could clear the phlegm on my own, it might not get infected.