Karen had suffered for two years with an undiagnosed debilitating respiratory illness. Thankfully, Royal Brompton’s specialists were able to give her a diagnosis she was looking for.

Karen had been suffering with pneumonia like symptoms on and off for two years. During these bouts of illness, Karen had pain in her lungs, breathing difficulties, coughing up blood and fevers at night. “I could not do anything; I was just so exhausted,” she said. “I wanted to share my story was to raise awareness of organising pneumonia. I wouldn’t want anyone to go through what I did before my diagnosis at Royal Brompton.”

In those two years, Karen was put on medication to manage her symptoms. Her breathing would improve, but the pneumonia would always return. Karen said: “I was sure there must have been a cause to these infections. Each time I was told ‘it's your asthma’ or ‘you’re just prone to lung infections.’ It didn't sit right with me.”

At her local hospital, the respiratory consultant sent Karen for tests that ruled out diseases like TB or cancer, but they were unable to confirm a diagnosis. One bout of illness left Karen needing a nine day stay in hospital on oxygen.

“The consultant came to see me,” Karen said, “and drew the curtains round the bed, he asked: ‘do you want anyone to sit with you?’ I know from my nursing days that usually means it’s bad news. He told me there were spots on my lungs, which could be cancer. I went for more tests and cancer was ruled out again. He said: “I think it's time to send you to Royal Brompton.”

Professor Wells at Royal Brompton had seen all of Karen’s test results. On her first day in the hospital, he was able to give her a probable diagnosis of organising pneumonia. “I was so relieved to have a diagnosis I could have kissed him. It is a rare disease and probably why it wasn’t diagnosed sooner.”

It was confirmed that some medication Karen had been taking had triggered the organising pneumonia. She stayed on Lind Ward for further testing and to monitor her health.

I often say this, the staff were so kind on Lind Ward. They treated you with such respect and always took time to explain things.

The delay in diagnosis has left Karen with some lung impairment, but through her own research and with support from Royal Brompton, she is looking after her health and avoiding flare-ups. “I'd never heard of organising pneumonia before, so I started reading up about the condition myself. I wanted to better understand what my triggers were with it. It's quite unusual disease, which can be caused by so many things. If someone’s painting outside or has a bonfire, for example, I close the windows as not only can fumes of any sort trigger my asthma, but they could trigger my organising pneumonia too.”

Karen is careful with any medication she takes now. If she is prescribed something new to manage other conditions, she reaches out for advice from Royal Brompton’s pharmacy. “They are so helpful there. They really research these medications and whether I should be taking them if I have organising pneumonia. They get back to me in maybe two or three days. They are so kind and patient.”

Programmes from the arts team are helping Karen keep her lungs healthy. “I sing every day to strengthen my lungs and have the Singing for Breathing CD, which I would highly recommend.” 

I am so grateful to all the staff at Royal Brompton, and the lovely transport staff too. I believe my referral here saved my life. Some people get pneumonia once and it sadly takes their life and I had pneumonia so many times in those two years. I don’t think my body would have taken another bout.

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