I discovered I had NTM by accident

Judi lives with a rare disease called non-tuberculous mycobacteria (NTM), and COPD. She wants more people to know about NTM and get the specialist care they need.

Judi

Nearly 6 years ago, I went for a hospital appointment - nothing to do with my lungs. But I’d been coughing up blood for the previous week, which I told the consultant. I was immediately sent for an X-ray, and a week later, a CT scan.

Almost immediately afterwards, I was told I had lung cancer in my right lung and possibly also in my left lung.

A week later, after further tests, I was told I didn’t have lung cancer.

It was such a roller coaster.

I had endless tests

They carried on with tests. I had so many - PET scan, MRI scans, bronchoscopy, blood and lung function tests – to name but a few. And all the while I was coughing up blood.

After another week I was told that they'd been over optimistic: I did have lung cancer. A month later they said I also had NTM.

My doctor suggested removing part of my right lung. Two of my cousins, who are medical professors in different fields, helped me with a second opinion and I decided not to go ahead. 

I agreed to a biopsy on my left lung. But a few days before I was due to have it, I was coughing up huge amounts of blood – so the biopsy didn’t happen.  And all my frequent scans showed no change in my lungs.

I was having no treatment, just endless tests. At times I felt I lived at the hospital.

When I was diagnosed, I cried with relief

Four months after this all started, I saw a new registrar and he said, ‘It’s not cancer - in either of your lungs.’ I cried with relief! 

He did confirm I had NTM. I have other conditions too, including chronic obstructive pulmonary disease (COPD) and a disease affecting my muscles. I still do cough up blood every few weeks and no-one knows why that stops and starts.

My specialist monitors me closely

Since early 2014, I’ve been going regularly to hospital for tests and monitoring.  I’m lucky to have a very attentive consultant who I see every 3 months if I feel well, and every 6 weeks if I’m feeling unwell.  This can be due to an infection or a COPD flare-up.

I’m not on any medication for NTM. It’s a lengthy drug regime – and luckily, I don’t need it.

It’s clear to me that not many people – including health care professionals – have heard of NTM. I know it’s unusual and difficult to diagnose.  But more people need to know about it and get the kind of care I’m having. 

New UK information

It’s great the British Lung Foundation have published new information about NTM. When I first Googled ‘NTM’, I found US sites and was really concerned by some of the information and forums. 

My advice is to get any new symptoms you have checked out. Not everyone with NTM coughs up blood. Other symptoms I have are extreme fatigue, night sweats, fever and between 3 and 6 chest infections a year. 

You may need a lot of tests to rule out other conditions. But it’s a huge relief to get a diagnosis that explains what you’re going through and to get specialist care.

I now live my life much happier and trust my consultant!


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28 March 2019