Mick: living with chronic pulmonary aspergillosis and vision loss

This account describes Mick’s experience around 2009–2011. His diagnoses, medicines and treatment reflect that period and are not current medical advice.

I began having health problems towards the end of 2006. I had difficulty swallowing and eating, and I was losing weight. I was diagnosed with dysphagia and emphysema. At the time, I thought food was getting stuck in my oesophagus, and I wondered whether a fungal mass might have been involved. Doctors had diagnosed a hiatus hernia, but I did not know whether the two were connected.

After I stopped smoking, I began having repeated infections. Doctors investigated them with sputum and blood tests, and eventually identified organisms they could treat.

In October 2009, I was admitted to St Thomas’ Hospital with malnutrition and lung infections. I spent eight weeks in hospital, including time in an isolation ward, and also caught swine flu. I was very seriously ill and remember little of the first few weeks.

Doctors found Aspergillus in my lungs and started me on voriconazole. I began to eat again and slowly regained weight, although I was bringing up large amounts of thick sputum. I was discharged on 2 December, still needing a wheelchair.

Changes to my vision

I was taking several medicines for different infections. In March 2010, I began seeing a white square of light after taking voriconazole. By April, my vision had deteriorated quickly: I struggled to focus and distinguish colours.

A doctor arranged an urgent eye assessment and stopped my medicines. Eye specialists investigated the unusual and rapid loss of sight. The deterioration eventually stopped, but I was told that both optic nerves had been permanently damaged. I later registered as partially sighted.

Further lung problems

After my medicines were stopped, I became breathless and had palpitations. I was admitted to hospital again in May. My doctors told me that my left lung had been severely damaged and was no longer functioning, while my right lung was also badly scarred.

I started itraconazole. Later, after I began coughing up blood, I was referred to Manchester for specialist care. At the time I wrote this account, I was very breathless and concerned about fungal balls in my lungs.

Best wishes,
Mick