By Marie Unsworth
1.When did you first get symptoms?
My symptoms started a few days after accidentally being covered & inhaling mould dust from a huge rotting sunflower head!
2. How did your symptoms change over time?
My main symptom initially was a tickly irritable cough that turned into a productive cough that lasted all day & night for weeks & months. Eventually I was coughing up blood to. I was also getting more & more out of breath.
3. How did the medics respond to your symptoms?
I told my story to everyone I encountered & that was a lot over the following months. Everyone dismissed any connection to what I was saying happened. There were eye rolls. I was prescribed antibiotics regularly but they didn’t work. I even broke a rib coughing so much. I had IV antibiotics which also didn’t work.
4. Have you ever been admitted to the hospital for your condition/symptoms?
I was admitted, as an emergency twice, then surgery. Once with chest sepsis, the second time for a collapsed lung & blockage in my lungs showing on CT scan. I was kept in for a bronchoscopy. The bronchoscopy was inconclusive, so I then had to have a PET scan. The third time was for major surgery for suspected lung cancer. I’m a non smoker but if you have lungs you can get lung cancer. I had two lobes of my lung removed. It wasn’t lung cancer though, I had been misdiagnosed! At the 8 month point, since the sunflower incident, I had the results from surgery. No cancer evident but fungal.
"It’s gone & wont come back," I was told.
It was another two months, before I was seen in London & I started to get the answers I needed.
5. Did you meet any stand-out medics along the way?
A nurse one day at the hospital when I said I’m not going home until someone takes this seriously, it had been months by now. She looked at me & said you are right, I’m not happy either & I’m going to find a respiratory consultant right now.
The team at the Royal Brompton Hospital who have taken care of me since. They are all very passionate about raising awareness so that what happened to me doesn’t happen to others.
6. Did you have any negative interactions with medics along the way?
I had a very negative interaction with a consultant following the misdiagnosis. He basically wouldn’t refer me on to a specialist in aspergillosis. I had to research myself. I contacted the British Lung Foundation who put me in touch with a support group. I contacted a specialist myself in the NHS who said I needed to be seen. Off I went back to my GP who referred me to this specialist at the Royal Brompton hospital.
It’s been 5 years since surgery & I am monitored regularly with blood tests by the team there. The correct treatment if I had been correctly diagnosed before surgery would have been steroids & anti-fungal medication. Every time I write this it shocks me still.
7. What was the test that finally diagnosed you?
A blood test for aspergillus specific markers, a thorough look at my history & pre surgery scans. I was diagnosed with the allergic type of aspergillosis ABPA for short. It’s a rare disease & because I had no history previously of lung problems, like asthma, I was quite unlikely to have it. In my case, though my body was completely overwhelmed & the mould caused a massive allergic response. This resulted in the cough & mucus plugs which blocked my airways & eventually caused the lung to collapse in.
8. What would your tips be for anyone else who thinks they could have a similar diagnosis to you?
Trust your intuition, keep repeating yourself to your GP. Ask for the blood tests.
There is a lot of information available on the Aspergillosis Trust website which will inform you more than I can explain here. There are other patient stories there as well.
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