"Ongoing care of rare respiratory illness"

I have a rare incurable fungal infection on my lungs known as Chronic Pulmonary Aspergillosis which was diagnosed 7 years ago. 

In 2020 I moved to Perth to be close to family and was naturally concerned about my ongoing care and treatment. Any worries were rapidly dispelled when I was contacted by Ninewells consultant David for an appointment.

Since then, I have seen David regularly and he has always been excellent, taking time to explain my complicated illness and discuss treatment options. He has continued to monitor my condition and worked hand-in-hand with the National Aspergillosis Centre in Manchester - the world authority on Aspergillosis diseases.

12 months ago my condition took a severe turn for the worse, and despite being prescribed a most advanced (and expensive) drug, tests revealed that my fungal infection had become resistant to all traditional anti-fungal medication, and was deteriorating.

I was speedily admitted to Ninewells in an attempt to reverse this rapid decline and a new solution was proposed. The new approach would involve a regime of daily intravenous infusions, 28 consecutive doses repeated every 3 months. To facilitate this, I was referred to the Clinical Investigation Unit (CIU) at PRI for daily visits, each lasting 2-2½ hours.

The team at the CIU have been excellent; caring, compassionate, and exceptionally good natured, always prepared to listen to my issues and suggestions, and being very kind.

On weekends and holidays my treatment is administered on the reception unit in Ward 4. This is sometimes a different experience due to the nature of their work. The ward can often be very busy, but despite me sometimes feeling a bit of an imposition, they always get the infusion completed efficiently and generally with a smile and kind words.

During my visit to Ninewells last year, I saw a physiotherapist. This was because my condition had deteriorated to such an extent that I had lost weight, muscle mass, energy and much of my previous fitness. 

I was referred to the Pulmonary Rehabilitation team at their gym in PRI. This was excellent, and combined with my new IV drug regime marked a turning point. Slowly, painfully slowly, I could see improved fitness as I completed the course under the very patient and supportive attention of Andy and the team.

As a follow-on, I was then referred to the recovery programme at Bell's Health Centre in Perth where the tutor, Marčin, has been an excellent coach and given me much encouragement and instruction. I still attend twice a week, making continuous progress and I feel I am almost back to the fitness level I enjoyed last year. (Still, of course, way below pre-illness fitness levels when I had a very active life in the mountains!)

I have no illusion that there will ever be a cure for my condition, but have been delighted and more than satisfied with the care I have received from NHS Tayside. I remain optimistic that one day one of the new oral drugs currently being developed will improve my condition and relieve the workload on NHS Tayside.

Thank you for giving me the opportunity to submit my story.