Chip C shares his experience of severe asthma from childhood, a delayed diagnosis of allergic bronchopulmonary aspergillosis (ABPA), and the changes illness brought to his work, music and daily life. His account is told with characteristic humour and determination.
Chip’s story describes his own diagnosis and treatment over many years. His treatment history is not current guidance, and what helped him may not be right for someone else. Please speak with your healthcare team about your own care.
Chip’s story
I think it all started when I was about three. I was too young to remember, but my mum told me I was first admitted to hospital with severe asthma. After that, I was in and out of hospital like a yo-yo on elastic—often four or five times a year.
When I was six, I was sent to a special hospital in London, where I stayed for three years. I finally came home at nine, to a family and a world I hardly knew, but I adapted. The hospital admissions continued. At eleven, I was sent to an “open-air” boarding school, which was supposed to help children with respiratory problems get the care and fresh air they needed. I still ended up in hospital—just in a different county.
I escaped from that “prison laughingly called a school” at sixteen and continued my career as a regular respiratory patient. At nineteen, after an argument with a girlfriend, I started smoking. My asthma seemed to improve for a while and eventually caused me far fewer problems. I still had occasional attacks and hospital stays, but they became less frequent. For about twenty years, I had almost normal breathing. I stopped smoking again after a few years; I’m describing what happened to me, not recommending smoking as a treatment.
In the meantime, I lived a very full life. I took up martial arts, cycling, rowing, sailing and motorcycling; I drank, partied and got up to the usual things. I ran a business, studied Environmental Science, qualified as a further and higher education teacher, and taught science and music. I learned music, played in bands and duets, and performed hundreds of solo gigs as a guitarist and singer.
From 1998 to 2003, I enjoyed working as a lecturer in science and music. Then my department moved into a building that was still being renovated. Sometimes there was so much dust in the air that I could not see someone walking towards me—spooky! Not long afterwards, I was admitted to hospital with a blocked and collapsed lung.
For the next year, my problems were blamed on asthma. I was taking antibiotics and large amounts of prednisolone, using nebulisers and trying other treatments, but nothing worked.
Eventually, I went to my respiratory consultant and told him forcefully that what I was experiencing was not asthma. My sputum and symptoms were different, and none of the treatment was helping. To my surprise, he agreed. He told me I had ABPA. At the time, he and his colleagues knew little about the condition, so he asked me to research it and report back. That sparked my interest in looking into the science for myself. I’m pleased to say that my consultant and colleagues have since learned a great deal about ABPA and have helped me immensely.
It turned out that tests taken when my lung collapsed had shown large amounts of Aspergillus and a very high IgE level. Because of an administrative error, the results did not reach my consultant for twelve months. That was a year of suffering and, as I put it at the time, becoming friendly with the local undertaker.
In 2004, I was diagnosed with aspergillosis and began treatment with itraconazole and prednisolone. I was told to stop the antibiotics and start the antifungal treatment. I noticed an improvement within days.
The years that followed were difficult, with frequent hospital admissions. In 2008, I had to give up work because I could no longer do my job. It is hard to lecture when you cannot breathe. I also had to stop singing and performing. Sadly, I never learned to cough and wheeze in tune!
My doctors thought I may have encountered Aspergillus during the building renovation, but they could not prove that this was the source. My existing lung damage from asthma may also have made me more vulnerable. My consultant told me that developing this disease was extremely unlikely. I told him I wished I had won the lottery instead.
While I was still working, and in the years afterwards, I studied Aspergillus and its effects on the respiratory system. I researched possible causes, triggers and symptoms, and learned a great deal. I even tried identifying fungi in my sputum with a microscope—lovely!
At the time I wrote this account, I was managing ABPA, asthma and bronchiectasis with help from my clinical team, treatment, nebulisers, a better understanding of my condition and a nagging wife. I was still having bad bouts of asthma or Aspergillus, and was admitted to hospital about twice a year.
I could no longer work, but I was trying to write a book, continuing to research my condition and keeping busy—possibly in a vain attempt to avoid going nuts!
Did this page help you?
Tell us in one minute