Soraya: My experiences of being diagnosed with aspergillosis

My aspergillosis journey began sometime between 2002 and 2004. I had started losing weight and had little energy. At first, my doctor thought I was suffering from burnout and advised me to rest, but this did not help. 

At that time, I was already living with chronic obstructive pulmonary disease (COPD), emphysema and a collapsed lung from surgery I had 10 years earlier. I saw a lung specialist for some tests. The initial scans showed nothing, but after a CT scan, they found a ‘round space’ and ‘white areas’ in my left lung. Further tests revealed high levels of antibodies in my blood. I was given antibiotics including prednisone and tested for alpha-1 antitrypsin deficiency before I was diagnosed with aspergillosis. 

After my diagnosis, I took itraconazole for 6 months to manage my symptoms, but this made me feel unwell, so I stopped taking it. However, my infection came back 6 months later which led me to take itraconazole continuously for the next 12 years. Staying on track with medication has been a challenge during my aspergillosis journey and at times it has severely impacted my lung function. It is important for people living with lung infections to not quit medication too soon, something I regret not listening to.

Aspergillosis is a relatively rare condition and not many people know much about it. Looking back, I am happy that the first lung specialist I saw was knowledgeable about the condition even though my current doctor is not. My journey has been difficult at times and a lot of my knowledge has come from books and the internet. I remember feeling so overwhelmed when I was first diagnosed with a chronic condition, I even started planning my own funeral. 

However, my experiences have taught me that it is important to make the most out of life, no matter your condition. After leaving my job, I have more time to eat healthily and do the things that help me relax. I still have good days and bad days, but I make sure to take part in activities that I enjoy.