My Aspergillosis Journey - Rosalind Sunley
My experience of aspergillosis starts in 1976 when I lived on a farm in Leicestershire, the farmhouse was damp, mouldy and in poor condition and the farmyard around it an absolute mess. It was a dairy farm.
An asthmatic as a small child my lungs deteriorated rapidly, constant infections and very poor breathing, eventually due to very poor health I moved from the farm. My lungs did not recover, my asthma became a huge problem, different doctors tried different inhalers to get it under control and I was constantly getting lung infections. I was treated for pleurisy, pneumonia, and many severe lung infections. In 1985 I brought a house needing renovation, it was damp, mouldy, and needed gutting, as work progressed my lungs declined significantly.
I was working on the night doctors’ line at the time and helping the student health centre with their new intake. My severe cough was causing concern amongst some of the doctors I was working with, my GP was giving me antibiotics. One morning I was taken aside at the student health centre and advised they were concerned about my lungs and had spoken to my GP. I was taken to the public X-ray unit. Several X-rays later, I was called in, advised they had found a hand sized shadow on my left lung and streaking on my right lung, they wanted to admit me to the infectious disease ward. I was a single parent and as I needed to make arrangements, I was taken home, my GP arrived at the house and stayed the night! I was taken to the hospital in the mornings. Several tests later, a consultant asked me whether I had ever lived on a farm. I had aspergillosis, I was put on steroids and remained an outpatient for five years. After that I was released to GP care at home and used steroid inhalers and prednisone when my lungs flared.
While in Leicester this worked, and my lungs were maintained. I moved to Swanage in 2020, they seemed to not understand the aspergillosis and often resisted at first steroids for flare ups. At one point when things were particularly bad, I advised the GP that I thought the aspergillosis was the issue, I was advised it was unlikely to be the aspergillosis and that I would be unlikely to have it again. Shortly after this my GP did some training and she would ask me whether I needed steroids, or I felt there was an infection. I also had an asthma nurse at the surgery who understood how to manage my lungs. I had X-rays at times when my lungs were particularly bad which sometimes showed shadows which would clear a few weeks later.
My lungs flared very badly in 2019 and I was sent for X-rays, it was clear at the hospital there was a problem. A GP called to say they were referring me to the hospital, possible lung cancer. I was sent for a CT scan. When I saw the Consultant, he told me I had mild central bronchiectasis, I explained to him the history of aspergillosis and advised him I was of the understanding I had ABPA. He said it was likely due to the central bronchiectasis. There was no information on his hospital records or on the referral letter about the history of aspergillosis. I was meant to be seen 6 months later to see if the tubes had cleared naturally. 18 months later I was seen in December 2021, my lungs were not great, and I had a continuous cough I was referred to the DAIRS team for physio and nurse care. The first sputum sample showed Staf A, I was given antibiotics, a follow up sputum sample showed Pseudomonas A. I was given home IV Ceftazidime and Ciprofloxacin tablets. My lungs continued to deteriorate after the antibiotics were completed and I was admitted a month later by my GP. I was given Meropenem IV. I was advised to not reach for steroids but to use Ventolin if breathless. My Symbicort 200 was reduced to two inhalers a month. I normally used it as a reliever and preventer on the smart method and had a smart action plan from GP asthma nurse. My breathing was very up and down, I felt in the October the aspergillosis was causing a problem. By end of January 2022 my lungs were in poor shape, the lung casts were unusual, and I was very concerned.
A bad infection developed, and I was finally put on IV Meropenem in March, once admitted I showed a cast, I had produced to one of the consultants. She requested blood tests, and I was moved to an isolation room away from COVID patients. My own consultant came to see me just as I was leaving, he asked me whether I had ever had aspergillosis and when I advised that I had already told him this at our first meeting asked where I had been treated. He advised me that as I was getting DVT’s from the mid lines he would no longer want to do them and a PICC line was also not an option. He also told me he did not want to treat me with steroids and that anti-fungal were not an option, I was taking anticoagulants for the DVT. When I got home, I decided I needed advice from an aspergillosis specialist to see whether the aspergillosis was active or needed any treatment. I managed to see Dr Armstrong James who advised my GP regarding steroids and I am on the waiting list to be seen at Brompton Hospital. I am using airway clearance with AerobiKa twice a day, three times a day of airway clearance when my lungs flare. I am nebulising Colomycin twice a day and now have access to steroids when needed. I still have the 2 Symbicort a month that has not changed.