Carol S: living with asthma and ABPA

Carol S describes living with asthma from early childhood and being diagnosed with allergic bronchopulmonary aspergillosis (ABPA) after a long and difficult illness. She shares how repeated flare-ups affected her life and the improvement she later experienced after starting antifungal treatment.

Carol’s story

I was born in 1939 and had my first asthma attack when I was three. There were not many asthma medicines then, so when I became breathless I was put to bed until I felt better. Over time, I learned to live with being breathless.

I grew up, got married and had two children. Whenever I caught a cold, my asthma became a problem. I was hospitalised with pneumonia shortly before I became pregnant with my first child.

After my second child was born, I started seeing an allergist to find out whether that might help my asthma. I had the usual tests and began allergy injections for several things, including mould. I did not notice much difference. The doctor I was seeing used prednisone for asthma attacks, and I gained 60 pounds that year. When I raised the possibility that prednisone was responsible, the doctor said I was eating too much. This was around 1968.

I looked into prednisone’s side effects and found that weight gain was listed as one of them. I changed allergists. The new allergist did not use prednisone and, after doing new tests, said mould was not one of my main allergies. I started a new course of allergy injections, but again I did not notice much change in my health.

In early June 1976, I was hanging a banner that had been stored in someone’s attic for years. There was a lot of dust. I immediately began wheezing and felt very sick. I stayed breathless and unwell, but my allergist could not work out what was wrong. I received more allergy injections and several courses of antibiotics. Each antibiotic seemed to help briefly, then I became sicker again. I spent the whole summer feeling increasingly ill.

In early September, I went to see my family doctor. He sent me for an X-ray, which showed pneumonia, and gave me another antibiotic. He said that if I was not much better by the next day, he would admit me to hospital. The following morning, he did. I was admitted to Presbyterian Hospital in San Francisco.

After several X-rays showed that I was getting worse, the pulmonologist diagnosed ABPA. I was treated with high-dose prednisone and taken off the antibiotics. I spent nine days in hospital.

From then on, I had ABPA flare-ups several times a year and was hospitalised with pneumonia many times. In 1985, I moved to the mountains, hoping that there might be fewer things to trigger my allergies and that I might stay well for longer. I used prednisone during flare-ups or pneumonia.

In May 1998, I heard there was a medicine being used for people with Aspergillus-related illness. I asked my doctor about trying Sporanox (itraconazole). After I started taking it, I felt that I became ill less often. I had fewer colds and pneumonias and no further hospitalisations for a time. Later, my doctor and I changed the treatment plan.

At the time I wrote this account, I was still taking itraconazole and hoped to continue for as long as it helped me. My experience was my own; it does not show what treatment will be suitable for someone else.