Donna A: living with a complex Aspergillus-related illness

Donna A describes years of asthma followed by a severe and prolonged illness, during which Aspergillus was eventually found in a lung sample. Her account includes the long search for answers, the impact on her work as a nurse, and the challenges of living with a condition that did not fit neatly into a familiar diagnosis.

Donna’s story

I had been diagnosed with asthma more than 30 years earlier and had used inhaled steroids since the 1980s. In the spring of 2004, my asthma attacks became more frequent and took longer to recover from. I was short of breath, extremely tired and had pain when breathing in.

After nearly a month of antibiotics and steroids without improvement, I was admitted to hospital for intravenous and nebulised treatments. I was profoundly tired and had chills so severe that the whole bed shook. I also experienced hallucinations, which I thought might have been related to low oxygen levels. After two weeks, I was sent home, but I did not feel better than when I went in.

For the next six months, I continued taking steroids and used a nebuliser at home. I was given 15 courses of five different antibiotics, but my condition did not improve. Friends told me that my skin looked grey and that the light had gone from my eyes.

I was admitted to hospital again. This time, an infectious diseases specialist joined the pulmonologist involved in my care. After about eight days without improvement, a sputum culture grew Aspergillus. I was initially told not to worry because Aspergillus can be present in the mouth and might have contaminated the sample.

My pulmonologist arranged a bronchoscopy. Afterwards, I was told that about 60 millilitres of green material had been removed from my lungs. The doctor described the lung tissue as looking like “raw hamburger meat.” When I returned to my room, I realised I had more energy than I had felt in a long time. I wanted to get out of bed, and my friends said the sparkle had returned to my eyes. It took eight weeks for the final results: the only organism grown from the specimen was Aspergillus niger.

The infectious diseases specialist was concerned about the risk of liver damage from itraconazole. I remember feeling so desperate to find something that might help that I was willing to accept the risk. I was referred to another infectious diseases clinic. The doctors there explained that itraconazole was licensed for ABPA caused by Aspergillus fumigatus, and they could not be sure whether it would help in my case. I left with a prescription and the suggestion that I try it for a month or two to see how I felt.

Having a diagnosis did not mean having a cure. I continued working until 2007, taking time off for hospital treatment and working half-days when I could not manage a full shift. My performance at work became harder to maintain, and I stepped down from my role as charge nurse in a busy cardiac catheterisation laboratory. I took a leave of absence, then returned for a few hours a week to help with other duties. Eventually, my position was eliminated.

I found the aspergillosis website several years ago and learned a great deal about fungal disease. Much of the information did not seem to describe my situation, because many studies focused on illness caused by A. fumigatus. My symptoms seemed similar to ABPA, but I did not meet the diagnostic criteria. At the time, my treatment included several asthma medicines, itraconazole, and occasional antibiotics and oral steroids.

Itraconazole helped in some ways, but my liver enzyme results rose after I had been taking it for a period, and I had to stop it to give my liver a break. I also wrote that my dose was later reduced and sometimes increased when I had problems. That was my own treatment history, not advice for anyone else. Oral steroids raised my blood sugar, so my care also involved managing that. I took vitamin D and calcium as part of my regimen at the time.

In December 2011, I was told that my IgG and IgE levels were very low and started intravenous immunoglobulin replacement therapy. I found this surprising because people with ABPA I had met through the support website often talked about very high immunoglobulin levels. My doctor hoped the treatment would reduce the number of severe infections I experienced. I was left wondering which had come first: the fungal problem or my weakened immune system.

This has been an extremely frustrating and depressing illness. My life has changed so much. Chronic disease is hard. I try to follow the plan agreed with my doctors and monitor my peak flow and blood sugar, which helps me feel that I have some control. I have become very aware of small changes in my health and try to get help early, but I can still become violently ill.

My pulmonologist did not often see people with a problem like mine, so I shared information with him and we tried different approaches together. Sometimes I felt like a science experiment. I just hoped it would be a long-term study.