I live with my wife in the countryside near Wexford town in Southeast Ireland, where I work as a Rural Development Manager.
I was diagnosed with aspergillosis in 2022. I used to grow lots of large sunflowers and when the flowers began to decay, I decided to save the seeds by storing them in the polytunnel. After a few weeks, when I shook the flower heads to extract the seeds, I inhaled large clouds of blue/grey dust. I believe this may have triggered my aspergillosis, as my lungs already had scarring from pneumonia.
Sometime later, bathroom renovations in my home resulted in lots of dust for a few weeks. This is another favourite place for aspergillus to thrive. I was inhaling this dust every day, unaware of the damage it was doing. Of course, I had never heard of aspergillus at this point.
In March 2019, I was hospitalised with cavitating pneumonia and later diagnosed with bronchiectasis. I had regular chest infections, extreme tiredness and low energy over the following few years. I was also on treatment for Chronic Fatigue Syndrome (CFS), a long-term condition that can affect different parts of the body, causing chronic flu-like symptoms and extreme tiredness.
In February 2022, I was hospitalised again for 17 days due to pneumonia and diagnosed with severe adult-onset asthma. I was on oxygen 24/7 and my lungs were blocked with mucus. This mucus tested positive for the fungus, aspergillus fumigatus, and eventually I was referred to a pulmonologist who confirmed that I had Chronic Pulmonary Aspergillosis (CPA). I was prescribed high doses of steroids for several months which caused horrible side effects. I was then started on antifungal medication and have remained on it since. I am also on inhalers, long-term antibiotics and low-dose medication to manage my extreme tiredness.
In January and again in June 2024, I was hospitalised with pneumonia and flare-ups of bronchiectasis. Following further investigations, my diagnosis was revised: I was told I did not have CPA after all, but instead a combination of allergic bronchopulmonary aspergillosis (ABPA) and severe asthma with fungal sensitisation (SAFS).
In October 2024, I was hospitalised again after testing positive for COVID-19. At that time, I was treated with antibiotics through a special tube in my arm, called a PICC line, to target a pseudomonas infection which had colonised in my lungs. Pseudomonas is known to co-exist with aspergillus in vulnerable individuals. Unfortunately, I had a severe reaction to the antibiotic, which led to an extended hospital stay. This was surprising because I had taken this drug several times before, but never delivered slowly through a PICC line like this.
The impact on my lifestyle is considerable. Before my diagnosis, I spent a lot of my spare time growing organic fruit and vegetables in my polytunnel. Since the Aspergillus fungus and Pseudomonas bacteria are common in compost, soil, moist and dusty environments, I have unfortunately had to stop this hobby. I have also stopped all my voluntary community activities and any physical work because of the extreme tiredness.
My symptoms include extreme tiredness, frequent headaches and regular chest infections. There is always a trade-off between coping with side effects versus the need for the medication, along with a constant fear of picking up a new infection, as this leads to frequent hospital stays and interferes with my life.
For me, aspergillosis is unrelenting and debilitating. Every morning I cough up dirty mucus, a daily reminder of what my consultant calls a “complex mix” of aspergillosis, bronchiectasis and asthma.
The impact on general wellbeing cannot be overstated. Finding ways to relax and not focus on the disease is particularly important. Due to the uncertainties of this chronic disease, long-term planning is impossible.
I am fortunate to be under the care of the Fungal Disease Team at a hospital in Dublin. I am closely monitored with CT scans, lung function tests, sputum cultures and blood tests to monitor drug levels and other factors. These regular hospital visits provide reassurance in managing and controlling the disease.
Acceptance is an ongoing challenge. There are many things I can no longer do, but I do my best to focus on what I can do, rather than on what I cannot. The ongoing support and encouragement of my wife, Kathryn, and daughters, Sarah and Rachel, is important. My employer is also considerate and allows me to work from home when possible. I listen to my body and rest when I know I can do nothing else.
To slow disease progression and maintain some quality of life, I now avoid contact with soil, compost and decaying plants. I have a robotic lawnmower to keep the grass cut. I have taken on some new hobbies such as watercolour painting, drawing, and doing challenging jigsaw puzzles. I practice mindfulness and meditation to reduce stress. I strive to stay in the moment rather than dwell on the future.
If I am ever in a risky location, such as crowded areas, I always wear a FFP3 face mask. We had our home damp-proofed and improved ventilation in our bedroom and bathroom. We also use an air purifier in the living room when the wood burning stove is lit.
Wanting to know as much as possible about my disease and be able to share my experience to help and support others is what motivated me to become involved with the ELF Patient Advisory Group (PAG).
I welcome the fact that medical experts are keen to listen to the real-life experiences of people who are living with this disease every day. While I have been attending online meetings hosted by the team at the National Aspergillosis Centre (NAC) in Manchester for the past two years, I’ve only recently joined the ELF Patient Advisory Group.
When you have a rare chronic disease that very few people have heard of, it can be lonely and overwhelming. During the challenges of life, people need people. Knowing that you are not alone when involved with the PAG is itself a source of hope and support.
From my experience, there is a huge lack of awareness and understanding of this rare lung disease among both medical professionals and the public. Having lived with aspergillosis for almost three years, I have only recently come across another Irish person with the condition. I’m sure there are many more, but do they even know it?
I expect there are people with recurring chest and sinus infections, coughing and mucus who have aspergillosis that has never been checked or diagnosed. These people may be spending time in damp or dusty environments or work with compost, as I did, unaware that their surroundings may be causing their recurring respiratory issues.
Like everything health related, early detection is key to improving outcomes. Every opportunity should be availed of to increase awareness of aspergillosis.
I am always interested to stay informed about the latest developments concerning aspergillosis and related lung conditions that I have, such as bronchiectasis and asthma. From my experience, aspergillosis is rarely a stand-alone disease. I am particularly interested in learning more about how to manage the side effects of the various medications needed to control the disease.
I look forward to participating online with the ERS Congress in September and appreciate the people who host such events. Similarly, the National Aspergillosis Centre (NAC) in Manchester hosts weekly and monthly online patient meetings. I attend the monthly meetings whenever I can.
Do your own research and get family members to do the same. If I had not done my own research, I would never have discovered NAC or ELF. Their support and knowledge are invaluable. I learn something new and helpful at every meeting that I attend.
From experience, I know that a long-term disease like aspergillosis, in whatever form, can be overwhelming and cause anxiety and low mood. This is a natural reaction. It is so important but often easier said than done, to stay in the moment, accept that illness is part of life, control what you can and try not to dwell too much on the future.
Maintain perspective and a hopeful outlook. Do not curl up in a ball on the couch. Stay as active as you can. I walk up to 4 kilometres on level ground several times each week. This helps maintain lung function and muscle strength and, of course, it is also good for the mind.
Take your medications as prescribed and at the same time each day. If you are on antifungal medication, take great care when using other medications because of the high level of drug interactions.
Make sure you get yearly flu and COVID-19 vaccines, as well as the pneumonia vaccine, as recommended.
This verse is from a business advisory book written by a friend, Blaise Brosnan. I believe it is equally apt for people dealing with any long-term disease.
Don’t you quit
When things go wrong as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low, and the debts are high,
When you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don’t you quit.
Stick to the fight when you’re hardest hit,
It’s when things seem worst,
That you mustn’t quit.
~Anon
