Tanya’s story
Tanya talks about her experience of NTM, her pathway to diagnosis and how she has learnt to manage her condition.
I was diagnosed with mild to moderate emphysema in 2012 and given two inhalers. I smoked in the 1970s and 80s but not since. I had a really bad dose of flu in 2005 and after that never really shook off a cough, very occasionally coughing up blood. I began to get regular chest infections. Around 2015 I had a CT scan and was told I had bronchiectasis and was put under the care of a consultant, who I saw every six months or so. At each appointment I was asked to produce a sputum sample which I found really difficult to do in a short amount of time. The consultant advised a variety of antibiotics for the chest infections but they made little difference. I was probably taking antibiotics for two weeks every couple of months and at one point tried a daily antibiotic for a few months.
From 2012 I began exercising for at least 15 minutes a day. I increased the time regularly until I was exercising for at least 45 minutes a day, either on a cross trainer, cycling, walking, or sometimes an exercise class. I saw a physio privately who taught me an active breathing technique. However, I was increasingly ill. I was tired all the time and my cough was so bad I would sometimes vomit. A bad coughing fit would leave me exhausted. I was working at a further education college and it was becoming increasingly difficult to do a full day’s work. I loved my job but cut my hours in half. I also wondered if the chest infections were from spending a lot of time around young people, and I was very stressed by coughing in public.
In 2018 we moved to Wales for a quieter life and later that year I gave up my job. The following year I was back and forth to the doctors with chest infections and taking antibiotics every 6-8 weeks. I saw a different physio privately who taught me postural drainage which I found much more efficient at bringing up mucus. However, despite postural drainage three times a day, the chest infections continued, and I remained tired and unwell.
I no longer saw the consultant because of covid. In April 2020 I coughed up a large amount of blood and was referred to a consultant at the local hospital. At the first meeting she heard me cough and said she knew what to test me for. I had a CT scan and over the next week I did a number of sputum samples which revealed I had a pulmonary mycobacterium avium complex (MAC) infection. I was transferred to the TB clinic and another consultant who thought that from the damage in my lungs, I had had MAC for about four years. I am allergic to two antibiotics, and thus it took a while to find antibiotics that would work. In March 2021 I began taking a combination of rifampicin, ethambutol and azithromycin.
After a couple of months, I had more energy and was coughing less. I could walk up hills without collapsing and could sleep at night. I was on the antibiotics for a year. The clinic regularly tested my heart and every two months I provided a sputum sample. The worst impact of NTM was in my right lung where there are two large strips of damage plus a hole of some sort. The consultant also said I didn’t have emphysema, just bronchiectasis, and I could stop using inhalers as long as I didn’t get breathless. I stopped taking the antibiotics in March 2022, but I am still with the clinic and will provide sputum samples every two months to ensure I remain bug free.
As well as the physical affects, NTM has required a measure of mental readjustment. Leaving my job was particularly hard and I struggled for months with a lack of purpose. It was a relief to finally get the NTM diagnosis, but it is also disconcerting how pervasive it is in the environment and what I need to do to avoid it and stay well. I try and do at least an hour of exercise a day: a morning walk and then exercise in the afternoon and I also do three sessions of postural drainage every day. I have never sewn before but for my mental health I acquired a sewing machine and so far, have made eight patchwork quilts and a lot of cotton bags. I am also writing a book and learning Latin so life is very good!