Colin: living with aspergilloma and recurrent bleeding

Colin describes his experience of coughing up blood, being investigated for tuberculosis, and later learning that he had Aspergillus-related lung problems. His account follows many years of working abroad, repeated episodes of bleeding, procedures to control it and changes in antifungal treatment.

Colin’s story

While working in Greece in 1989, I started coughing up blood. I had an X-ray at a local hospital and was told I might have tuberculosis (TB). The English company I worked for flew me back to England, where I had more tests and X-rays at a hospital in Oxford. Although the tests were negative, I was treated for TB for six months because my symptoms and X-ray looked consistent with it.

Further tests showed a possible mycetoma in the upper lobe of my right lung, Aspergillus in my airways and positive Aspergillus precipitins. I was told at the time that there was no treatment for Aspergillus.

I felt fit and well, so I returned to work. I was 39, had never smoked and had always eaten healthily. In 1990 or 1991, I gave up alcohol completely. I continued to feel well, although I sometimes coughed up blood. It was usually minor, though occasionally more serious, and tended to happen at night or early in the morning, so it did not interfere with my working day.

I had annual check-ups in Oxford, including X-rays and blood tests. I later developed an aspergilloma in my left lung, but I remained active and felt fit enough to carry on working.

In 2001, I had a more serious bleed one morning. It stopped and then started again a couple of times. I was admitted to a local hospital on a Greek island for a few days, then flew back to England. My Oxford hospital arranged for me to have embolisation in both lungs at Hammersmith Hospital in London.

I returned to work abroad. I was still active, but gradually began to have occasional chest pain, night sweats and a very bad cough. I lost my appetite, began to lose weight and felt less fit.

In September 2003, I had a serious bleed that continued over five days. I went back to hospital, received a blood transfusion and stayed there for five days. I was prescribed itraconazole and continued taking it after I returned to England.

Itraconazole did not seem to reduce the bleeding. I had another embolisation at Hammersmith in February 2004. The following year, I was referred to Wythenshawe Hospital in Manchester. My itraconazole dose was increased. It did not seem to change the bleeding, but my cough improved and I was able to sleep better.

A scan in 2005 showed a cyst in the lower lobe of my left lung and extensive bronchiectasis in the upper lobe of my right lung. Around that time, I was also told that I had finger clubbing. In February 2006, I had another embolisation, this time at Wythenshawe Hospital.

Tests later showed that the Aspergillus was resistant to itraconazole. In August 2007, I started voriconazole. A liver-function test showed that it was affecting my liver, so the dose was reduced. A few months later, I was found to be resistant to voriconazole too. I had begun to feel fitter while taking it, and the bleeding had improved, so I was sorry to have to stop.

In August 2008, I started posaconazole. When I wrote this account in September 2013, I was still taking it. I reported having no side effects, only relatively minor episodes of bleeding while on it, and no bleeding for well over a year. I also felt fitter than I had for some years and had gradually begun to regain weight.

Colin — 29 September 2013