Hi there!
I made a post earlier in the year about waiting for my VATS biopsy results. My experience was very unusual, but if it helps anyone else in future, I figured it would be useful posting it.
Last year I was having palpitations, and was sent to A&E just as a precaution. I had a CT scan done to check my heart, and incidentally they found three nodules on my lungs, one of which showed cavitation.
I was kept in and they did a million tests. I am in my early 30’s and have never smoked, and had had a few respiratory symptoms but nothing severe. My occupation rang alarm bells though, I work in a fungal laboratory and so was at risk of a pulmonary fungal infection, plus am exposed to samples that could potentially contain TB. All my initial infection tests came back negative.
I had a bronchoscopy that showed increased lymphocytes but not an awful lot else that was diagnostically significant. My team were beginning to discuss some scary potential causes, such as rheumatoid related conditions and maybe even cancer. They decided to do a VATS biopsy, which I had in January.
The wait was excruciating, it took several weeks. The initial tests showed that the nodules were necrotising granulomas, which rang alarm bells for infections. Thankfully though, there was no malignancy which was a huge relief. My team sent the biopsies to some very specialised labs here in the UK that do PCR based diagnosis. They can use DNA to pinpoint organisms, including ones that don’t exist here in the UK.
Finally, after all of this, I got my diagnosis!
I have/had a fungal infection called Coccidioidomycosis, also known as Valley Fever.
What is absolutely crazy about this, is that I have lived in the UK my entire life. I work in a fungal lab, but because this fungus resides only in soil in the southwestern USA, we have never, ever had a case of it at our lab. It simply doesn’t exist here. So I had no exposure from work, or from anywhere else here. So where did it come from?!
I had been on holiday in California in 2004, for two weeks, when I was just 13 years old. I would have breathed in this fungus, gotten some sort of respiratory infection, then the residual fungus just made a home in my lungs. My doctors did ask my travel history, but none of us ever thought to mention anything going back that far. I can only find a handful of other cases documented that have been diagnosed in the UK.
Thankfully, this isn’t a condition that needs treatment at the moment, just a scan once a year or so. It’s a huge relief to not have been something more serious! I’m trying to use my position at my job in Mycology to educate the department a bit, and find a way to use my case to help others. It mimics TB and malignancy on CT scans, and as someone who performs fungal diagnostic tests, I understand that the blood results are not always plain and simple, which makes it a nightmare to diagnose. If it saves someone going through the stress of surgery and endless testing, not to mention the worry waiting for potentially life changing news, I think it’s worth doing. I wonder how many other people in the UK have been on holiday to the states and are walking around with it, I imagine there must be others!
Thankyou for reading, love goes out to anyone waiting for lung biopsy or other test results, the stress is unbearable. It’s not something I ever want to go through again.
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