Sue’s Story
Sue talks about the tortuous pathway to getting the right diagnosis and all the uncertainty that meant for her.
It was early 2019 when I became concerned that I was losing weight and had no appetite. I had a bit of a cough but put that down to working in a dusty environment. I also had night sweats, but just put that down to my age.
I can’t say I felt really ill, I just felt ‘not right’. I went to see the doctor and he was concerned about my weight loss (I had lost a whole stone in weight).
He arranged a chest X-ray which showed some inflammation; I was told it was pneumonia and was given antibiotics.
In April 2019 I had a CT scan which showed nodules in my lungs. I was then told it was looking like smoking-related COPD. I had smoked in the past, but not for over 20 years.
Could it be lung cancer?
I had an appointment to see the lung consultant in August 2019, but that was postponed to October 2019.
All this time I had in the back of my mind it could be lung cancer. The cough started to get worse over a month or so and was usually worse in the morning.
A couple of times on the way to work I had to stop the car because I was coughing so much. I was also getting a lot of pain in my chest, however I put this down to pulling muscles when coughing.
It’s TB!
I finally got to see the lung consultant on 17th October 2019 and a bronchoscopy was arranged quite quickly.
On the 8th November I had a phone call to say the consultant wanted to see me later that day. All sorts of things at this point were going through my head.
When I walked into his office the first thing he said was: “It’s good news and bad news. The good news is it isn’t lung cancer, but the bad news is it’s TB!”
I was completely shocked…. how did I catch this?
Anyway, Public Health England were involved. I was initially signed off work until the New Year and I started a 6 month course of antibiotics with initially Voractiv (a combination of four drugs used to treat TB, Rifampin, Isoniazid, Ethambutol and Pyrazinamide).
The antibiotics did make me feel a little unwell at times. I was also put under the care of 3 TB nurses who were great. There was some improvement after this treatment, but I was never sure if it was because I was off work or whether it was due to antibiotics.
Mycobacterium abscessus
In December I saw the lung consultant who said it was Mycobacterium abscessus or perhaps MAC (Mycobacterium avium complex). He said I was difficult and confusing because I wasn’t feeling really ill. He agreed with the TB consultant for me to carry on with the TB treatment.
In February 2020 I had another appointment with the lung consultant who said the treatment was very toxic. I said (because I wasn’t feeling too terrible) that I would rather wait and see what happens.
In April 2020 I had a telephone consultation with an infectious disease consultant who agreed with my wish to just wait and see what happens.
In September 2020 I had another CT scan and in in November a bronchoscopy which showed another infection and subsequently was sent a 2 week course of antibiotics, - it was difficult to say whether there was much improvement after this.
Bronchiectasis had not been mentioned
I have recently had a telephone consultation with my respiratory consultant. We discussed my latest chest X-ray and he said there was extensive scarring in my right upper lung (I think).
He also said I have bronchiectasis, which I don’t think has been mentioned before and that my airways are twisted and widening. I did ask him if I have NTM lung disease because this has never been mentioned before. He said yes.
I still have questions
Anyway, I’m going to see him again in 3 months. In the meantime, I’m going to have another bronchoscopy and he’s going to arrange pulmonary rehabilitation and for me to see a chest physiotherapist.
I still have so many questions about NTM. How and where did I get it from? How long have I had it for?
At the moment things don’t seem to be getting worse. I know it’ll never get better. I try and avoid anything that could irritate my lungs. I try and use natural cleaning products where possible. I try and pace myself when doing housework as just walking up the stairs leaves me out of breath
NTM Patient Care UK
This is why I fully support NTM Patient Care UK in educating people as I feel it’s a very little understood disease even by healthcare professionals.
I would say to anyone newly diagnosed to get all the information from NTM Patient Care as it is UK based.