Mick: living with CPA and adapting to change
Mick shares his experience of living with chronic pulmonary aspergillosis (CPA). After a serious lung bleed and hospital admission, his care and daily life changed significantly. In this video, he talks about treatment, ambulatory oxygen, pulmonary rehabilitation and the adjustments he has made over time.
A serious bleed and changes to care
Mick describes being taken to hospital after a serious bleed. A CT scan showed changes that had not been apparent on his X-rays. His team made a treatment plan that included antifungal treatment and embolisation. After discharge, an oxygen assessment led to him using ambulatory oxygen.
Mick describes a serious bleed in his own experience. This is not something everyone with CPA will experience. If you cough up blood, follow your healthcare team’s advice about what to do.
Pulmonary rehabilitation and social connection
Mick valued the education sessions that were part of pulmonary rehabilitation, alongside the exercise. He describes learning techniques from respiratory physiotherapists and how rehabilitation helped him understand more about living with a progressive lung condition.
He also reflects on how breathlessness and difficulty walking can make it harder to go out and stay socially connected. Support from his partner, friends and patient groups has been important to him. He describes joining creative and social activities where people can spend time together without needing to focus on illness.
Finding new ways to enjoy familiar interests
As his mobility changed, Mick began using aids such as a mobility scooter and adapted how he managed everyday tasks. He has also found new activities at home, including model making, crafts and jigsaws. Online walking and travel videos let him revisit places he would like to see.
Mick’s story is about adjusting to change, keeping in touch with other people and looking for ways to continue doing things that matter to him.
This is Mick’s personal experience, not medical advice. Speak with your healthcare team about pulmonary rehabilitation, oxygen, breathing techniques or mobility support.
Alison: living with ABPA and adrenal insufficiency
Alison lives in New Zealand and has allergic bronchopulmonary aspergillosis (ABPA), bronchiectasis and other complex health conditions. In this video, she shares her experience of developing adrenal insufficiency after long-term steroid treatment and the challenges of managing several conditions at once.
Recognising that something had changed
Alison was diagnosed with ABPA in 2019. In 2022, after coming off long-term steroid treatment, she began experiencing severe fatigue, nausea and difficulty getting herself moving. She wondered whether adrenal insufficiency might explain what was happening and contacted her GP. Tests and a hospital assessment led to a diagnosis of steroid-induced adrenal insufficiency.
Managing complex conditions and care
Alison describes the difficulty of balancing treatment for ABPA with the effects of long-term steroid use and adrenal insufficiency. Her care became more complicated when appointments were repeatedly postponed during the pandemic and it was difficult to access specialist advice. She also discusses living with other health problems and the uncertainty of working out which condition may be contributing to a change in how she feels.
Practical ways Alison manages day to day
Alison talks about keeping records of symptoms and medication, carrying medical information and emergency supplies, and learning to explain her needs to healthcare professionals. She stresses the value of patient support groups, where people can share experience and feel understood.
She also describes adapting her activities and finding projects that bring purpose and enjoyment while recognising that her energy and capacity can change. Support from other patients has helped her feel less alone and better able to advocate for herself.
This page shares Alison’s personal experience. It is not medical advice. Her discussion of steroid treatment, medication timing and emergency plans should not be used as instructions. Anyone with adrenal insufficiency should follow the individual plan agreed with their healthcare team.
Marcela: A 2026 follow-up: everyday life with ABPA
In this later conversation, Marcela talks about the practical and emotional parts of living with ABPA. She describes adapting her work and social plans when her energy or symptoms change, recognising when she needs to rest, and finding hobbies and activities that remain manageable and enjoyable.
Marcela also discusses explaining her needs to other people, the frustration of having to change plans, and the value of learning from others who understand the condition. She says that the National Aspergillosis Centre’s patient support group has helped her feel less alone.
Read Marcela’s earlier story: Marcela’s experience of ABPA: diagnosis, treatment and finding support
Marcela also shares personal experiences relating to treatment, exercise, breathing practices, food and environmental triggers. These are her own experiences and should not be taken as medical advice or recommendations for others.
Marcela: living with ABPA in Portugal (2024)
Marcela lives in southern Portugal. In this video, she describes her experience of allergic bronchopulmonary aspergillosis (ABPA), from the changes in her health that led to a diagnosis to the effects the condition and its treatment have had on her everyday life.
Marcela shared a follow-up in 2026: Read about her everyday life with ABPA, pacing and finding support
From asthma to an ABPA diagnosis
Marcela had lived with asthma for many years and felt it was generally under control. She describes a change in her health in 2020, with a persistent cough, tiredness and other symptoms that were difficult to explain. During the COVID-19 pandemic, she found it difficult to get the investigations she felt she needed.
After seeking another medical opinion, Marcela had further tests, including a CT scan and bronchoscopy. She was diagnosed with ABPA in 2022. Until then, she had not heard of the condition and was surprised by how much it changed her life.
The challenges of treatment and everyday life
Marcela speaks openly about the difficulty of managing a complex condition alongside the effects she has experienced during treatment. She describes changes to her voice, concentration, energy and mood, and the impact these have had on her work as a lawyer, her family life and her ability to make plans.
She also reflects on how hard it can be when other people assume that someone is well because they look well. For Marcela, connecting with people who understand the experience has been an important source of support.
Finding support and adapting
Marcela says that the National Aspergillosis Centre’s patient support group helped her learn about aspergillosis and feel less alone. She values being able to ask questions and hear from people with similar experiences, especially on difficult days.
She has also found ways to adapt activities to how she is feeling, including photography, spending time with friends, listening to music and practising gentle activities when she can. She describes learning to prioritise and take each day as it comes.
Marcela’s message to other patients
Marcela encourages people to learn about their condition, prepare questions for their healthcare team, talk with family and seek support from others. She recognises that everyone’s experience is different and that finding a balance between treatment and quality of life can take time.
This is Marcela’s personal experience, shared in her own words. It is not medical advice. Treatment decisions should be discussed with your own healthcare team.
A rare case of aspergillosis reported after compost exposure
This page summarises a 2008 news report about one unusual case. It is not evidence that ordinary gardening or compost use commonly causes aspergillosis.
In 2008, The Guardian reported the death of a man after he inhaled fungal spores while opening bags of garden compost. The case was presented as an unusual example of severe aspergillosis associated with compost exposure.
Aspergillus is common in the environment, including in soil and compost. Aspergillosis is rare in healthy people, and most people who breathe in the mould do not become ill. People with certain lung conditions or weakened immune systems may be more at risk.
The report is a reminder that serious illness can happen, but it should not cause unnecessary alarm. For current advice about gardening and compost, see our guide to gardening safely with aspergillosis.
Original report: Jo Adetunji, “Man dies after inhaling fungal spores from garden compost,” The Guardian, 13 June 2008.
A patient describes his life with chronic pulmonary aspergillosis
Woodrow M shares his personal experience of aspergillosis. Like many people, he had not heard of the condition before he was diagnosed and treated at the National Aspergillosis Centre in Manchester.
RW: living with CPA and long-term antifungal treatment
RW shares his experience of living with chronic pulmonary aspergillosis (CPA) and receiving antifungal treatment over many years. His story includes changes in treatment and periods when his condition worsened after treatment stopped.
RW’s interview describes his own treatment history and is not current treatment advice. Treatment decisions depend on each person’s circumstances. Please speak with your healthcare team before making any changes to your medicines.
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MD: living with CPA, aspergilloma and antifungal resistance
MD shares her experience of chronic pulmonary aspergillosis (CPA) and an aspergilloma. Her interview describes a difficult diagnostic journey, coughing up blood, and changes in treatment after drug resistance was identified.
MD’s interview describes her own experience and treatment at that time. It is not current treatment advice, and individual care varies. Please speak with your healthcare team about your diagnosis or medicines.
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Patient with ABPA: an experience of coughing up mucus plugs
This patient shares her experience of living with possible allergic bronchopulmonary aspergillosis (ABPA), including episodes of severe coughing and bringing up large mucus plugs.
This interview describes one person’s experience and treatment at that time. It is not medical advice or a guide to current treatment. Please speak with your healthcare team about your own symptoms and care.
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HM: living with asthma and ABPA
HM shares her experience of living with childhood asthma and allergic bronchopulmonary aspergillosis (ABPA). In this interview, she describes changes in her condition and her personal experience of treatment during that period.
HM’s interview describes her own experience and treatment at that time. It is not current treatment advice. Treatments and equipment may not be suitable for everyone; speak with your healthcare team about your individual care.
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