Tom Bermingham - ELF Spotlight Article
Tom Bermingham – This article was prepared in collaboration with the European Lung Foundation and will feature in the July Patient Spotlight.
1. Can you tell us a bit about yourself and your experience with aspergillosis?
I live with my wife in the countryside near Wexford town in Southeast Ireland. I work as a Rural Development Manager in a local development company. I was diagnosed with aspergillosis in 2022. Looking back on what might have triggered my aspergillosis, my views are as follows: In 2021, I grew lots of large sunflowers, when the flowers began to decay, I decided to save the sunflower 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 lodged in my lungs which had scarring following previous pneumonia. Sometime later, we were doing bathroom renovations in my home which resulted in lots of builder’s 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.
1. What was your journey to diagnosis like?
In March 2019, I was hospitalised with cavitating pneumonia. Subsequently, I was diagnosed with bronchiectasis. I had regular chest infections, ongoing fatigue, and low energy over the following few years. I was on treatment for Chronic Fatigue Syndrome (CFS). Then in February 2022, I was hospitalised for seventeen days due to pneumonia and was diagnosed with severe adult-onset bronchial asthma. I was on oxygen 24/7 and my lungs were blocked with mucus – this mucus subsequently tested positive for the fungus, aspergillus fumigatus. Subsequently, I was referred to a pulmonologist who confirmed that I had Chronic Pulmonary Aspergillosis (CPA) – that was the first time I ever heard of aspergillosis. I was prescribed high doses of steroids for several months which caused horrible side effects. In November 2022, I commenced on 200mg Itraconazole and have been on this level ever since, without too much side effects. I’m also on daily inhalers, long term antibiotics, and low dose Naltrexone (for fatigue) since February 2022. I was hospitalised in January and June 2024 due to pneumonia and bronchiectasis flare ups. I was then told that I did not have CPA, but I did have a mix of ABPA (Allergic Bronchopulmonary Aspergillosis) and SAFS (Severe Asthma with Fungal Sensitisation). While this is all somewhat confusing, all types require the same treatment and have similar impact, so which specific type I have, is largely irrelevant in my case. In October 2024, shortly after testing positive for Covid 19, I was on intravenous antibiotic therapy (through a PICC line) to kill Pseudomonas bacteria which had colonised in my lungs. Pseudomonas is a close friend of aspergillus, given that they both like to co-exist in the lungs of vulnerable people. Unfortunately, I had a severe reaction to the antibiotic (piperacillin tazobactam) and spent eleven nights in hospital due to recurring fevers and dreadful headaches. This was unusual, given that I had had this drug several times previously, though never through a slow release PICC line.
2. How does aspergillosis affect your daily life?
The impact on lifestyle is considerable. Prior to my diagnosis, I spent much of my spare time growing organic fruit and vegetables in my polytunnel. Given the prevalence of the Aspergillus fungus and Pseudomonas bacteria in compost, soil, moist and dusty environments, unfortunately, I have had to stop this hobby. I have also had to stop all my voluntary community activities as well as all physical work, due to fatigue. The symptoms which in my case resemble long covid, include fatigue, frequent headaches, and regular chest infections. There is always a trade-off between coping with side effects versus the need for the medication. There is a constant fear of picking up a new infection, because invariably, this leads to frequent hospital stays and interferes with work and family life. For me, aspergillosis is unrelenting and debilitating. First thing every morning, I cough up dirty mucus – the daily reminder of living with what my consultant defines as 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 in a Dublin hospital. I am closely monitored with CT scans, lung function, sputum cultures and blood tests to monitor drug levels etc. These regular hospital visits provide reassurance in dealing with and containing the disease.
4. What has helped you manage the condition?
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 & Rachel is important. My employer is also considerate and facilitates me to work reduced hours from home. 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, despite my love of gardening, I avoid contact with soil, compost, and decaying plants. I have a robotic lawnmower to keep the grass cut. I’ve taken on some new hobbies to include watercolour painting, drawing, and making challenging jigsaws. I practice mindfulness and some meditation as a stress buster. I strive to stay in the moment rather than dwell on the future. I avoid mouldy, damp, and dusty environments. If I am ever in a risky location (including a crowded area), I always wear an FFP3 face mask. We had our home damp-proofed and fitted improved ventilation in our bedroom and bathroom and use an air purifier in the living room when the wood burning stove is lighting.
5. What motivated you to join the ELF Patient Advisory Group?
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 take on board 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. I found both the NAC and ELF through my own research trying to find out as much as I could about the disease. It would be beneficial if the medical profession referred aspergillosis patients to these invaluable supports.
6. What do you hope to contribute to or gain from being part of the group?
When you have a rare chronic disease that very few people have heard of, I know that it can be lonely and overwhelming. During the challenges of life, people need people, so knowing that you are not alone when involved with PAG is itself a source of hope and support. I have no doubt that my active involvement in PAG will benefit me. I also hope to benefit others affected by the disease, through sharing experience and supporting clinical research.
7. Why do you think it’s important to raise awareness about aspergillosis?
From my experience, there is a huge lack of awareness and understanding of this rare lung disease among both the medical profession and the public. Having lived with aspergillosis for almost three years, only recently, I first came across another Irish person with the disease. 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, mucus etc who have aspergillosis – that has never been checked or identified. These people may be spending time in damp and/or dusty environments or working with compost like I was, blissfully unaware that that very place is the cause of 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.
8. Are there any upcoming projects or topics you are particularly interested in?
I’m always interested to stay informed of 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 in any individual. I am particularly interested in learning more about how to deal with the side effects of the various medications required to contain the disease. I look forward to participating online with the ELF conference 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. The NAC also hosts an online World Aspergillosis Day in February each year. This is an excellent resource and great credit is due to the organisers.
9. What advice would you give to someone newly diagnosed?
Do your own research or/and get family members to do likewise. If I hadn’t done my own research, I would never have discovered NAC or ELF. Their support and knowledge are invaluable. I strongly recommend joining support groups. I learn something new and helpful at every meeting that I attend. From experience, I know that a chronic disease like aspergillosis (in whatever form) can be overwhelming and cause anxiety and low mood. This is a natural reaction. It’s so important but often easier said than done, to stay in the moment, accept that illness is part of life, control the controllables and try not dwell too much on the future. Maintain perspective and a hopeful outlook. Try visualising what you want, rather than worrying about what you fear. Don’t curl up in a ball on the couch. Stay as active as you can. I walk up to 4km on level ground several times each week. This helps to maintain lung function and muscle strength and of course it’s also good for the head. Take your medications as prescribed and at the same times each day. If you are on Itraconazole antifungal medication, take great care using other medications due to the high level of drug interactions. Ensure that you get yearly flu and covid vaccines as well as the pneumonia vaccine as recommended.
10. Is there anything else you would like to share?
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 chronic 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.
Tom Bermingham