Jen W describes years of recurring cough, mucus plugs and pneumonia, followed by investigations that found Aspergillus in her lungs. Her account follows the uncertainty of diagnosis and treatment, and her questions about why the infections kept returning.
Jen’s account describes events and treatment from 2000–2013. Her experience cannot establish what caused her illness or guide another person’s care. Diagnosis and treatment depend on the individual. Please speak with your healthcare team about your own symptoms and treatment.
Jen’s story
My history with Aspergillus began around 2000, when I was living in California’s Diablo Valley. I started having what seemed like seasonal allergies to tree pollen. I had lived in the same area for about ten years and could not explain why the allergic episodes had started. I wondered whether stress might have played a part, but I did not know.
The episodes brought severe coughing fits and plugs of mucus. The coughing would sometimes develop into pneumonia, which was treated with several courses of antibiotics. This pattern continued from year to year until I moved to the coast in the summer of 2009.
My new home had a small garden with two overgrown fruit trees. Fallen fruit and leaves collected there through autumn and the rainy winter. One sunny Saturday in early 2010, I began clearing the garden. The next day, I started coughing and felt pain when I breathed in. I had experienced brief bouts of this kind of pain before, but this time it persisted and began to affect my daily life.
I went to my doctor, who arranged a chest X-ray and prescribed antibiotics. After consulting the respiratory team, he referred me to a lung specialist. I had a CT scan and bronchoscopy. The scan showed scarring in my left lung, which the doctors thought might be related to earlier pneumonias. The bronchoscopy found Aspergillus as well as bacterial infections. The specialists carried out tests to look for an underlying immune problem, but those tests did not provide an answer.
I was treated with antibiotics and itraconazole. The pain gradually eased, and follow-up X-rays and another bronchoscopy showed improvement.
In 2011, I was clearing rotting fruit and leaves again. My doctor had recommended wearing a mask for garden clean-up, but I was not wearing one that day. The following day, I felt the pain again, this time on the right side. My doctor was initially unsure that Aspergillus could be involved in a new area. Another X-ray showed changes in my right lung, and further blood tests found antibodies to Aspergillus fumigatus.
My doctor thought that I might have been exposed to a large amount of Aspergillus while clearing the garden and suspected that I had developed a strong allergic response. That was his view at the time; I cannot know whether the garden caused my illness.
I continued antifungal treatment for several months, until my X-rays showed no further areas of blockage. My doctor then advised me to stop. I was uncertain about this because I had experienced several years of recurring problems. I began taking more care around things I thought might expose me to mould, including garden compost and damp basements. Even when I felt run down or thought I was getting a cold, I sometimes noticed lung pain, which left me unsure whether the illness had really gone away.
In December 2013, I went to the emergency department with pain in the centre of my chest and pain reaching up to my left shoulder. I did not want to assume it was coming from my lungs, in case it was a heart problem. My heart was fine, but I had another pneumonia. Initial laboratory results noted rare mould growth and recommended referral to mycology.
Looking back at my records, I realised I had been treated for pneumonia at least once a year since 2010. I usually felt healthy and led an active life, but I worried about the state of my lungs and the reason for the repeated infections. I still had questions: was Aspergillus living in my lungs and flaring up, was something in my home contributing, or was something else going on? At the time, my doctors did not have a clear answer.
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