From a patient's experience: why healthcare professionals must consider aspergillosis

Extract

My journey with chronic lung disease began long before my official diagnosis. While pregnant with my son, I suffered a massive pulmonary embolism. Both my son and I came very close to dying. I spent 6 weeks in hospital and was on blood thinners for over 8 months. During that time, my chest infections began. They were frequent, relentless and increasingly resistant to treatment. That episode did not just leave me physically scarred; it marked the beginning of a lifelong respiratory struggle.

Shareable abstract

Aspergillosis is often overlooked, but recognising it early in patients with chronic or recurrent lung infections can be life-changing. Lisa's experience shows why clinicians must consider aspergillosis. https://bit.ly/3WPqas3

My journey with chronic lung disease began long before my official diagnosis. While pregnant with my son, I suffered a massive pulmonary embolism. Both my son and I came very close to dying. I spent 6 weeks in hospital and was on blood thinners for over 8 months. During that time, my chest infections began. They were frequent, relentless and increasingly resistant to treatment. That episode did not just leave me physically scarred; it marked the beginning of a lifelong respiratory struggle.

A year later, in 1998, I was diagnosed with bronchiectasis. After years of repeated respiratory infections and hospital admissions, I underwent a partial lobectomy, hoping that removing the most affected section of my lung would solve the problem. For a while, it seemed to help, but 18 months later the exacerbations returned. What followed was a relentless cycle of infections, antibiotics and hospital stays that lasted for nearly a decade.

By 2011, physically and emotionally exhausted, I asked for a second opinion. That decision changed my life. A series of tests revealed a far more complex picture: a mannose-binding lectin deficiency, Aspergillus bronchitis and chronic colonisation with Haemophilus influenzae. Treatment began immediately: antifungals, targeted antibiotics and a prophylactic antibiotic to prevent recurrent infections. There were bumps in the road, the first antifungal did not suit me, but once we found the right one, my health dramatically improved.

For the first time in years, I could breathe more easily – both literally and figuratively. My husband and I began to plan our lives again. I could participate more in family life and experience moments of joy without the looming threat of the next infection.

But recovery came at a cost. I had to give up a career I loved as a project manager. Chronic pain from surgery and ongoing illness made it impossible to keep up with the demands of the role. The emotional fallout was severe. A therapist helped me realise I was grieving, not just the loss of work, but the version of myself that existed before illness took over. Accepting that I would never be “cured”, only managed, was one of the hardest things I have ever had to do. Living with a chronic condition means understanding that you won't “get better”, but only better at coping. Some days are good, others are unbearable. That reality is hard to accept.

I have been incredibly lucky to be surrounded by a strong support system – my family, my friends and my exceptional medical team. My consultants have supported me through some of the most difficult times. Although my Aspergillus bronchitis has remained relatively stable, my bronchiectasis continues to flare. In recent years, I have required multiple courses of i.v. antibiotics and occasional hospital admissions for intensive physiotherapy to aid airway clearance. Regular airway clearance is part of my daily life now. Some days, it feels like a mountain too steep to climb.

One of the most difficult parts of this journey has been realising how little is known, even in medical circles, about aspergillosis and the challenges of living with a chronic lung condition. Many healthcare professionals I encountered have never heard of it, let alone understood how to treat it. I had to educate myself, often piecing together my care through sheer determination.

That is why I now say: if you are dealing with chronic or recurrent lung infections, think aspergillosis. It may not be common, but it is not rare either. Missing it can have devastating consequences. For me, getting the right diagnosis changed everything. We need more clinicians to consider fungal causes when bacterial treatments are not working. Thinking beyond the obvious can save lives.

That frustration, isolation and lack of information led me and four others to create the Aspergillosis Trust in 2021. Our mission is simple but urgent: to improve outcomes for aspergillosis patients through education, advocacy and access to reliable, up-to-date medical information. We need more awareness, more research and more understanding across the medical community. This is a call to arms to listen to patients, to invest in learning and to ensure no one has to walk this path alone and uninformed.

I also joined the Aspergillosis Patient Advisory Group at the European Lung Foundation. Through both organisations I have connected with others who truly understand the challenges of living with a chronic lung condition. That connection has been life changing. The support I receive, and the support I can give, has helped restore a sense of purpose I did not realise I had lost.

Living with chronic lung diseases is unpredictable and exhausting, but it has also shown me the strength of community and the power of perseverance. Though I may never be fully well, I am no longer lost. I have found my voice, and I intend to use it.