While working in Greece in 1989 I started coughing up blood. An X ray was taken at the local hospital and I was told that I had TB. The English company I worked for flew me back to England and I went to a hospital in Oxford. Tests and more X rays were taken and I was told that although the tests were negative I would be treated for TB for six months as my X ray and symptoms suggested I had TB.
Further tests at the Oxford hospital showed that I had a possible mycetoma in the upper lobe of my right lung and that I had colonization with aspergillus and positive aspergillus precipitins. I was told (1989) that there was no treatment for aspergillus.
I felt very fit and well and returned to work. At that time I was 39 and had never smoked and always eaten healthily. In 1990/91 I gave up alcohol completely and continued to remain well although I did have occasional haemoptysis, often minor but sometimes more serious. The haemoptysis was always at night or early morning so did not interfere with my working day.
For several years I had an annual check up in Oxford (X ray and blood tests). I developed aspergilloma in my left lung but I had a very active life and felt very fit so was able to continue working.
In 2001 I had quite serious haemoptysis one morning. The bleeding stopped and then started again a couple of times. I went to the local hospital on a Greek island and was admitted for a few days. On leaving hospital I flew back to England.
My Oxford hospital arranged for me to have pulmonary embolisation (both lungs) at Hammersmith Hospital, London. I returned to work abroad. I was still quite fit and active but I gradually began to have occasional chest pain, night sweats and a very bad cough. I also lost my appetite completely, began to lose weight and began to feel less fit.
In September 2003 I had a serious haemoptysis, over five days, and went to hospital once more. I was given a blood transfusion and spent five days in the hospital. I was prescribed 200mg daily itraconazole and continued with the itraconazole on my return to England.
Itraconazole had little effect on my haemoptysis and I had another embolisation in Hammersmith Hospital in February 2004.
In 2004 I was given tranexamic acid tablets (3 x 500 mg) to take daily when I coughed up blood. I found tranexamic acid very effective for stopping my haemoptysis but only used it when I had a serious bleed.
In 2005 I asked for a referral to Wythenshawe Hospital, Manchester. My dosage of itraconazole was immediately doubled to 400mg daily but did not seem to make any difference to my haemoptysis, although it did improve my cough, so I was able to sleep better.
A scan in 2005 showed that I had developed a cyst in the lower lobe of my left lung. Scan also showed that I have ‘extensive’ bronchiectasis in my right upper lobe. Around this time it was pointed out to me that I had finger clubbing.
In February 2006 I had another embolisation at Wythenshawe Hospital.
I was found to be resistant to itraconazole and in August 2007 started to take voriconazole (400mg daily). By December 2007, a liver function blood test showed that the voriconazole was affecting my liver so the dosage was reduced to 300 mg daily. I became resistant to voriconazole within a few months. I had begun to feel fitter while on voriconazole and my haemoptysis was much improved and I was sorry to give up the voriconazole.
In August 2008, I started posaconazole (10ml twice daily) and have continued with posaconazole to the present day. I’ve had no side effects from posaconazole, have had relatively very minor episodes of haemoptysis while taking posaconazole, no haemoptysis at all for well over a year and I feel fitter than I have done for some years. For the last few years I have gradually been putting on weight.
29 September 2013