My COPD and NTM symptoms are very similar

Rebecca lives with COPD and is being treated for NTM. She’s looking forward to being clear of the NTM infection after 18 months’ treatment.

Rebecca

Ten years ago, I was diagnosed with chronic obstructive pulmonary disease (COPD).

I was over the moon when I’d stopped smoking two years before and felt great. But one day I felt breathless and didn’t feel right. My GP told me I had COPD.

There were nodules in my lungs

A year later I was shocked to learn I had pneumonia. When I had a CT scan and an X-ray, they found nodules on my lungs.

By this time, I felt breathless continuously. My COPD consultant suggested we explore the option of lung volume reduction with valves.

But the next set of tests showed one nodule had changed. My doctors felt it was not cancer, but decided to remove the tonsil and take a sample of the nodule at the top of my left lung for testing.

The test results were surprising

The results surprised all of us. It appeared the changes were old tuberculosis (TB) scar tissue. My consultant found this weird as all the tests for TB had come back negative. Nevertheless, I started to take antibiotics to treat tuberculosis(TB).

A couple of months later I had further tests to identify the type of TB. That’s when the test results showed I had a non-tuberculous mycobacterial infection, or NTM! TB and NTM bacteria are in the same group of bacteria.

When my COPD and lung function had got suddenly worse, I now realise it was due to the NTM infection.

When my COPD and lung function had got suddenly worse, I now realise it was due to the NTM infection.

TB and NTM are different

The test results were really important for me as I work with people with dementia. Active TB can be passed from person to person. But NTM lives in the environment.

For the past 12 months, I’ve been closely monitored and been taking antibiotics to treat the NTM. I’ve had checks of my liver and kidney function and seen my consultant at least every 3 months.

I take a lot of tablets at the same time every day. They have affected my appetite and at the start I lost a lot of weight. But my weight has now stabilised.

I pride myself on keeping active

When I was diagnosed with COPD, I was lucky to get pulmonary rehabilitation. I’ve kept doing my exercise class every other week, and it’s great being with other people. It really helps me and I know how hard I can push myself. The nurses can answer my questions – it’s so important to have health care professionals who listen to you and give you good advice. You can get very low sometimes.

A couple of months ago, my symptoms flared up. It was hard to know if it was COPD or NTM. It was a challenge to take even more tablets – antibiotics and steroids – and I had to work out a way to take them all without feeling nauseous all the time.

The symptoms of COPD and NTM are very similar

NTM looks and feels to me like the symptoms of COPD.

I hope that I will find out one day that I’m clear of the NTM bacteria. I’m due to have some tests soon and I hope to find out the treatment has worked. I've taken so many tablets and lost so much weight, but it will be worth it.

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19 March 2019