In this account, Jim A describes his experience of allergic bronchopulmonary aspergillosis (ABPA), from his first episodes of coughing up mucus plugs in the late 1980s to learning to manage recurring symptoms and speak up about his care.
Jim’s account reflects his own experience over several decades. Diagnosis and treatment have changed, and each person’s situation is different. Please speak with your healthcare team about your own symptoms and care.
Jim’s story
In the late 1980s, I developed a lung problem that just would not go away. Every other day or so, I would feel an irritating flutter in my lungs when I breathed. I would cough hard, trying to bring up small plugs. After a couple of months, I persuaded my primary care doctor to refer me to a specialist, because the problem was not going away.
I took some of the plugs with me. The lung specialist recognised the pattern and diagnosed ABPA. I remember being warned that my coughing might get worse for a while. It did, and what I brought up was unpleasant. Then the symptoms settled, and I felt relieved.
Several years later, the problem returned. I was seeing a different healthcare team. I had repeated chest X-rays because the shadows seemed to move, but nobody could explain what was happening. I became frustrated and insisted on seeing a specialist. The specialist was not familiar with ABPA, but agreed to consider the diagnosis and my previous experience. My symptoms improved again.
Some years later, I found a doctor who understood my condition and arranged regular monitoring. Since then, my symptoms have come and gone. At times they have settled without treatment; at other times, I have needed help. For me, they have often seemed to return in the autumn.
Living with ABPA has meant learning to describe what happens to me and to ask questions when I feel my concerns are not being heard. I keep my reliever inhaler available when my chest feels tight. My experience with inhaled steroids has not been helpful, but I know other people’s experiences and treatment needs may be different.
I used to turn compost in my garden and wondered whether that was connected to my symptoms. I cannot know what caused my ABPA. I have changed some of my gardening habits, but this is my personal choice and not proof that compost caused my condition.
My symptoms are an occasional nuisance, and I know others live with more severe forms of aspergillosis. I feel fortunate that my experience has been different. I am grateful to have found doctors who understand ABPA and to have learned how to take part in decisions about my care.
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