‘I’M STILL STANDING – (ME ‘N ELTON!)'

Breathing Easier After an ABPA Diagnosis: An Anonymous Patient Story

For many years, I experienced repeated periods of severe respiratory illness. I had flu-like symptoms, an ongoing cough, night sweats and exhaustion. At times I coughed up thick brown mucus plugs, although I did not understand what they might mean. I had previously been treated for asthma and chest infections, but I did not feel that the treatments fully explained or resolved what was happening.

When things became much worse

During one particularly severe episode, I developed persistent pain in one side of my chest, worsening breathlessness and a cough that would not settle. I became so exhausted that everyday tasks felt difficult. After treatment did not help, I was referred for further investigations.

An initial scan showed an abnormal area in my lung. I was told that more tests were needed to understand what it was. Waiting for answers was frightening. I had to take in the possibility that it might be something serious, while trying to manage symptoms that were already having a huge effect on my life.

I was fortunate to have support from people close to me. Their company, practical help and encouragement made a very difficult period more manageable.

A different explanation

As investigations continued, my respiratory team asked questions about my symptoms and possible exposure to moulds. The pattern of illness, scans and blood tests led to a diagnosis of allergic bronchopulmonary aspergillosis (ABPA). A fungal ball was also affecting part of my lung.

Although the diagnosis was daunting, it also brought relief. At last, there was an explanation for years of symptoms and a plan for treatment and monitoring.

Everyone’s route to diagnosis is different. My experience does not mean that asthma is the wrong diagnosis for other people. But it has made me feel that it is important to speak to a clinician if symptoms are changing, worsening or not responding as expected.

Starting treatment

Treatment had a major positive effect on my breathing. I began to sleep better, cough less and breathe without the same pain and wheeze. Follow-up scans later showed that the fungal ball had cleared, leaving only limited scarring.

That improvement was a huge relief. After living with symptoms for so long, I had not realised how much I had adapted to feeling unwell until I began to feel better.

Recovery was not simple

Improved breathing did not mean an immediate return to my previous life. Persistent fatigue and weakness remained difficult. Some days I could be active; on others, my energy could change quickly and I had to slow down, rest or change my plans.

I learned to balance gentle activity with pacing myself. I made practical changes to reduce the demands of everyday life and discussed persistent symptoms with my clinical team. Living with a long-term respiratory condition has meant accepting that recovery is not always straightforward, even when treatment is working.

Living with uncertainty

As my health improved, follow-up became less frequent. I was pleased that treatment had helped, but I also found it unsettling to feel less closely connected to the specialist team that had supported me through a frightening time.

Over time, I have learned that managing ABPA involves a balance: recognising meaningful changes in symptoms, following the monitoring plan agreed with my clinical team, and getting on with life as fully as possible between appointments.

Looking forward

My experience has left me grateful for the clinician who arranged further investigation, for the respiratory team who reached a diagnosis, and for the people who supported me when I was unwell.

My breathing is now much better than it was during that illness. I still have to pace myself and live with some uncertainty, but I also have a diagnosis, a plan and a renewed appreciation of the ordinary things that feeling able to breathe more easily can make possible.