Kay A: living with ABPA, asthma and a mycobacterial infection

Kay shared this account around 2011. It describes her personal experience and treatment at that time, not current medical advice.

I was diagnosed with asthma when I was two and with ABPA when I was 45. Looking back, I wonder whether ABPA may have been affecting me earlier: from about 30, I had repeated episodes of atelectasis, or partial lung collapse. Sometimes I could clear the blockage with chest physiotherapy, but occasionally I needed a bronchoscopy.

I had severe asthma as a child and was critically ill at 14, needing a tracheostomy and treatment for pneumothoraces in both lungs. As I got older, my asthma improved. For about 15 years, from around age 40, I had very few symptoms and enjoyed running, cycling and taking part in short triathlons.

In 2005, several problems occurred close together. I caught whooping cough, had a significant mould exposure at a remote fishing camp, and developed an M. abscessus infection. My cough became severe, and I had repeated episodes of pneumonia. My doctors thought the mould exposure had triggered my ABPA, but it was difficult to know how much each illness contributed.

Itraconazole did not help after nine months, so we stopped it. After several years of treatment and specialist consultations, my health improved. I received intravenous and oral antibiotics for the mycobacterial infection, and began omalizumab (Xolair) for asthma and ABPA. Because these treatments overlapped, my doctors and I could not be sure which condition had been driving my symptoms.

I had fewer severe asthma and ABPA episodes while taking omalizumab. In 2011, my allergist and I tried spacing out the doses. After several weeks, my cough worsened and I developed severe atelectasis, which required bronchoscopy. The samples from that procedure did not show Aspergillus.

When I wrote this account, I was back to cycling, hiking and skiing. I still had a daily cough, but it was much easier to manage. I was grateful for the treatments that had helped me return to the outdoor life I loved.

Kay A