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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

Marie who has aspergillosis - British Lung Foundation
Marie, who has aspergillosis

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.

The next day I had a bronchoscopy, but the doctor couldn’t get the tube down. I had a biopsy of the blockage, but it didn’t show anything. 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

Marie who has aspergillosis - British Lung Foundation

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.

To hear more from Marie, listen to her episode of the My Rare Disease podcast.

Want to know more about aspergillosis? Our online information covers the different types, causes, symptoms and treatment. 

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18 December 2019