Sandra Hicks’s Story - WAD

I look ‘healthy’ in this recent photo with my Labradoodle, Toby at Men-an-Tol, Cornwall, as aspergillosis is a ‘hidden’ condition – but infected lung cavities meant I struggled to walk up the gentle incline to reach it. Just getting to the top to admire the Bronze Age stone site and scenery felt like a real achievement.

I’d already had lung surgery in October 2015. This was to remove the left upper lobe, due to a large cavity infected with Aspergillus (fungus), Non-tuberculous Mycobacteria (NTM) and Pseudomonas. These bacteria commonly co-exist with Aspergillus, especially in bronchiectasis, which is permanent widening and scarring of the airways making it difficult to clear mucous. This is a vicious circle, because mucous ‘lurking’ around in the lungs makes a lovely home for microbes to thrive in. They all end up having a party in there! It makes me a ‘reluctant host’ though. Sadly, the lung surgery didn’t eliminate these infections and they’ve spread to other parts of my lungs. Currently the Aspergillus infection is resistant to all azole (oral) antifungals. The NTM isn’t responding to quadruple antibiotic therapy either. Usually triple therapy is sufficient for many people. So further research is urgently needed, to extend the range of treatments available for everyone in a similar, alarming situation. I never expected to be the poster person for antimicrobial resistance! That was never in the 5-year career plan…

It’s incredibly tough making the transition from being active and fully able-bodied – I enjoyed walking my dog for miles, to being limited in what I can do physically now. It really frustrates me and I rail against it. I would love to be able to run still. I was no marathon runner, but I did participate in several charity fun runs. I used to really enjoy playing tennis, badminton and squash, but can’t any longer. I would also like to go swimming and sailing again. Maybe even buy that Kawasaki motorbike I dreamed of, as I did pass my motorbike test a while back – a big tick on the bucket list! These activities are all off-limits now too, due to frequent lung infections or exacerbations of the existing long-term infections.

Despite all of this I am actually a positive, motivated, resilient, determined (my husband may even say stubborn!) person and prefer to focus on what I can do, rather than what I can’t any longer. That’s why most of the time I try not to reflect too much upon what life was like before getting the aspergillosis diagnosis, but think about what I can do to make a difference and help others instead. I wanted it to be something meaningful and to provide me with a sense of purpose. Hence co-founding Aspergillosis Trust with Jill Fairweather, Cliff Whitefoot and Dimpke van Nijnatten, with help from a few others, notably Jean Jones who does a fantastic amount of fundraising by holding coffee mornings. We are all working tirelessly to raise awareness and funds for research, but we are all fighting aspergillosis too and have good days and bad. So we would really appreciate extra help from anyone that would like to get involved with volunteering. Whatever your skills or however much time you can spare, we can find something for you to do to help us out – see our contact details below.

Writing and sharing this ‘patient story’ hasn’t been easy, because I could quite happily keep quiet and stay in the background, working behind the scenes as I’m a shy, private person. Everyone else’s courage in writing their story has inspired me to share mine, along with the need to raise awareness.

Please help us to help others get earlier diagnosis and treatment, as this is essential to improve outcomes. If repeated attempts to treat lung infection with antibiotics fail, then please think of fungal infections sooner. Similarly, if people have asthma flare-ups, despite using their inhalers correctly or have choking-coughing fits, sometimes with lung bleeds (haemoptysis) then please
#thinkfungus #WorldAspergillosisDay.