My shocking diagnosis of aspergillosis
After months of a constant cough, Marie was diagnosed with aspergillosis, a rare lung condition.
I can pinpoint the beginning of my lung problems. Before then, I’d never had a chest infection or any lung condition.
My grandchildren and I had grown sunflowers, with beautiful heads that grew the size of dinner plates. I began drying out the heads for the seeds. But I forgot about them, and after a few weeks they were incredibly mouldy. As I took them outside to put in the garden bin, a cloud of mould dust blew over my head and onto my face, so I ran inside to wash it off.
I got a tickly cough
Two days later I got a tickly cough that wouldn’t go away, throughout the day and night. It kept getting worse and I was very short of breath, so I visited my GP and told them about the sunflowers. They said there wasn’t a connection and gave me a week’s course of antibiotics, which didn’t help my symptoms. Neither did a second course. A month later, I went back as my cough was still really awful.
After 8 weeks and my third course of antibiotics, I got diagnosed with pneumonia and lost my voice.
My cough was becoming unbearable - it was constant and felt sticky with lots of mucus. I felt I’d never breathe properly again. Then I started coughing up blood, and a chest X-ray showed inflammation. I took more antibiotics.
I felt very unwell - I had a high temperature but was freezing cold. My daughter persuaded me to go to A&E. Again, I told them about the sunflower, but they took no notice. I was in hospital for several days and told I had chest sepsis. But I had a lot of tests - including for Legionnaires’ disease and HIV. I was treated with IV antibiotics for 6 days in total, returning as an outpatient.
I knew something more was going on
I was sent home but didn’t feel any better. I could hear a sucking sound coming from my lungs, which the nurse couldn’t hear. I was fed up. Walking any faster than a snail’s pace left me incredibly out of breath. I kept being told I was having a flare-up of the infection. I knew something more was going on.
Five months after I first went to my GP, I was referred to a respiratory specialist. I had a chest X-ray which showed my lungs weren’t any better. A CT scan showed I had a huge blockage in my lung, obstructing the air flow and collapsing my lung. I was admitted urgently.
I was told it could be something worrying and was sent home.
As an outpatient I had lung function tests and a PET CT scan which highlighted 4 areas of concern. I was referred to a chest surgeon for a further bronchoscopy in theatre. During the pre-op assessment I was told by the surgeon that, based on their experience , I had a carcinoid tumour and was told about the surgery I needed.
A few weeks later I had my surgery, a rigid bronchoscopy followed by an open thoracotomy and bi-lobectomy (the removal of 2 lung lobes). I woke up with a chest drain and, remarkably, was home after 2 nights. I was warned the results could be a while.
A ball of fungus!
Over a month later, I was told the blockage wasn’t cancer, but a likely ball of fungus, aspergillosis, however they weren’t sure what type. I was totally shocked.
It didn’t make any sense why this has happened to me.
Before all this, I was fit and healthy. I regularly cycled and swam. I had even completed the River Dart 6km swim a few summers before. It didn’t make any sense why this has happened to me.
I was very unhappy. I needed answers. I rang the BLF helpline and they told me about an online aspergillosis support group, which I joined and told my story. With people’s encouragement, I asked my GP to refer me to a specialist in lung fungal diseases.
I’m starting to get the answers I need
I went to the Royal Brompton a couple of days ago, and feel I’m starting to get answers. I had blood tests, peak flow test and a chest X-ray. My specialist thinks I have allergic bronchopulmonary aspergillosis (ABPA), which is caused by an allergic reaction to the aspergillus mould and it’s very likely to have come from breathing in the sunflower mould. But I haven’t yet got a firm diagnosis or treatment.
I want to raise awareness of aspergillosis
I feel better now I know what’s happened to me. But it’s not been easy to come to terms with it. The potential cancer diagnosis was very upsetting for me and for my family, but I think part of me knew that wasn’t the case. People would say how calm I was, and that’s because, deep down, I knew it wasn’t cancer.
I’m still part of the aspergillosis support group. It’s good to have that support from people who know exactly what you’re going through.
I hope in sharing my story I can raise awareness of aspergillosis. So many health care professionals dismissed my concerns about the mouldy sunflowers – if more people knew about this rare condition, I would’ve got answers much quicker.
Want to know more about aspergillosis? Our online information covers the different types, causes, symptoms and treatment.