Jen W: recurrent lung infections and Aspergillus
Jen W describes years of recurring cough, mucus plugs and pneumonia, followed by investigations that found Aspergillus in her lungs. Her account follows the uncertainty of diagnosis and treatment, and her questions about why the infections kept returning.
Jen’s account describes events and treatment from 2000–2013. Her experience cannot establish what caused her illness or guide another person’s care. Diagnosis and treatment depend on the individual. Please speak with your healthcare team about your own symptoms and treatment.
Jen’s story
My history with Aspergillus began around 2000, when I was living in California’s Diablo Valley. I started having what seemed like seasonal allergies to tree pollen. I had lived in the same area for about ten years and could not explain why the allergic episodes had started. I wondered whether stress might have played a part, but I did not know.
The episodes brought severe coughing fits and plugs of mucus. The coughing would sometimes develop into pneumonia, which was treated with several courses of antibiotics. This pattern continued from year to year until I moved to the coast in the summer of 2009.
My new home had a small garden with two overgrown fruit trees. Fallen fruit and leaves collected there through autumn and the rainy winter. One sunny Saturday in early 2010, I began clearing the garden. The next day, I started coughing and felt pain when I breathed in. I had experienced brief bouts of this kind of pain before, but this time it persisted and began to affect my daily life.
I went to my doctor, who arranged a chest X-ray and prescribed antibiotics. After consulting the respiratory team, he referred me to a lung specialist. I had a CT scan and bronchoscopy. The scan showed scarring in my left lung, which the doctors thought might be related to earlier pneumonias. The bronchoscopy found Aspergillus as well as bacterial infections. The specialists carried out tests to look for an underlying immune problem, but those tests did not provide an answer.
I was treated with antibiotics and itraconazole. The pain gradually eased, and follow-up X-rays and another bronchoscopy showed improvement.
In 2011, I was clearing rotting fruit and leaves again. My doctor had recommended wearing a mask for garden clean-up, but I was not wearing one that day. The following day, I felt the pain again, this time on the right side. My doctor was initially unsure that Aspergillus could be involved in a new area. Another X-ray showed changes in my right lung, and further blood tests found antibodies to Aspergillus fumigatus.
My doctor thought that I might have been exposed to a large amount of Aspergillus while clearing the garden and suspected that I had developed a strong allergic response. That was his view at the time; I cannot know whether the garden caused my illness.
I continued antifungal treatment for several months, until my X-rays showed no further areas of blockage. My doctor then advised me to stop. I was uncertain about this because I had experienced several years of recurring problems. I began taking more care around things I thought might expose me to mould, including garden compost and damp basements. Even when I felt run down or thought I was getting a cold, I sometimes noticed lung pain, which left me unsure whether the illness had really gone away.
In December 2013, I went to the emergency department with pain in the centre of my chest and pain reaching up to my left shoulder. I did not want to assume it was coming from my lungs, in case it was a heart problem. My heart was fine, but I had another pneumonia. Initial laboratory results noted rare mould growth and recommended referral to mycology.
Looking back at my records, I realised I had been treated for pneumonia at least once a year since 2010. I usually felt healthy and led an active life, but I worried about the state of my lungs and the reason for the repeated infections. I still had questions: was Aspergillus living in my lungs and flaring up, was something in my home contributing, or was something else going on? At the time, my doctors did not have a clear answer.
Learn more about aspergillosis.
Greg H: recovery after surgery for an aspergilloma
<p>Greg H, from Australia, shares his experience of an aspergilloma and the major lung surgery that followed repeated episodes of coughing up blood. His story describes the uncertainty of treatment, a difficult operation and his recovery.</p>
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<strong>A personal experience, not medical advice</strong>
<p>Greg’s account describes his own illness, surgery and recovery in 2011. It does not predict what will happen to another person or guide decisions about treatment or pain medicines. Please speak with your healthcare team about your own care.</p>
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<h2>Greg’s story</h2>
<p>Hi, my name is Greg. I’m a 38-year-old Australian man, and I’ve recently been through the experience of having an aspergilloma. The good news is that my story has a positive outcome.</p>
<p>Ten years ago, while working in Papua New Guinea, I contracted tuberculosis. I was treated in Australia through the Queensland health system and recovered. I remember doctors explaining that the scar tissue in the upper parts of my lungs might cause problems later in life.</p>
<p>Last year, that possibility became real. At work, I began coughing up enough blood to cover my hands. I was rushed to hospital, where the doctors monitored me and began investigating what was happening.</p>
<p>I met several specialists. They felt that surgery should generally be avoided if possible because the operation would be difficult and risky. A bronchoscopy did not show much beyond blood and scar tissue attached to the chest wall. The team decided to try antifungal treatment first, although they were unsure whether it would work. I was given Sporanox (itraconazole) and sent home.</p>
<p>Within a few weeks, I was windsurfing again and felt that things were looking positive. My doctor cleared me to travel to California to join my wife for Christmas. I went skiing at Tahoe and felt great. But on the flight home, I could taste blood again.</p>
<p>A week later, I was back in hospital, coughing up about a cupful of blood each night. My doctor told me to stop windsurfing and arranged for me to see a surgeon. I had been taking antifungal medicine for about five months, and the team decided it was time to operate. The surgeon made it clear that the operation and recovery would be tough and painful.</p>
<p>The surgery took six hours, and I lost a lot of blood. When I woke, I could hear people nearby discussing whether I might need a transfusion if the bleeding did not stop. Fortunately, it did. Within hours, I was sitting up and drinking coffee.</p>
<p>I had eight tubes and an epidural. I could stand up in the shower, although it took two nurses to move and manage all the tubes. Ten days later I left hospital, and seven weeks after that I was back at work.</p>
<p>I did not have much pain while I was taking the medicines prescribed after surgery, but I found the medicines themselves difficult. I became dependent on oxycodone and had a very unpleasant experience when stopping it. My advice, from my own experience, is not to stop a prescribed opioid suddenly or without medical advice. Ask your healthcare team how to reduce it safely.</p>
<p>I was jogging about six weeks after surgery and had my first windsurf about two months after. My doctor no longer needs to see me regularly. Apart from the large scar and numbness on the left side of my chest, I do not feel very different.</p>
<p>One strange thing was that I never really felt ill. I would generally cough up blood only when I went to bed. The whole seven-month period was tough, and recovering from surgery was difficult and slow—but I know other people are dealing with even harder things.</p>
<p><em>Greg Howard, Australia — November 2011</em></p>
Donna A: living with a complex Aspergillus-related illness
Donna A describes years of asthma followed by a severe and prolonged illness, during which Aspergillus was eventually found in a lung sample. Her account includes the long search for answers, the impact on her work as a nurse, and the challenges of living with a condition that did not fit neatly into a familiar diagnosis.
Donna’s account describes her illness and treatment between 2004 and 2011. Her diagnosis and medicines were specific to her circumstances at that time. Do not use this account to make decisions about treatment or medication doses. Please speak with your healthcare team about your own care.
Donna’s story
I had been diagnosed with asthma more than 30 years earlier and had used inhaled steroids since the 1980s. In the spring of 2004, my asthma attacks became more frequent and took longer to recover from. I was short of breath, extremely tired and had pain when breathing in.
After nearly a month of antibiotics and steroids without improvement, I was admitted to hospital for intravenous and nebulised treatments. I was profoundly tired and had chills so severe that the whole bed shook. I also experienced hallucinations, which I thought might have been related to low oxygen levels. After two weeks, I was sent home, but I did not feel better than when I went in.
For the next six months, I continued taking steroids and used a nebuliser at home. I was given 15 courses of five different antibiotics, but my condition did not improve. Friends told me that my skin looked grey and that the light had gone from my eyes.
I was admitted to hospital again. This time, an infectious diseases specialist joined the pulmonologist involved in my care. After about eight days without improvement, a sputum culture grew Aspergillus. I was initially told not to worry because Aspergillus can be present in the mouth and might have contaminated the sample.
My pulmonologist arranged a bronchoscopy. Afterwards, I was told that about 60 millilitres of green material had been removed from my lungs. The doctor described the lung tissue as looking like “raw hamburger meat.” When I returned to my room, I realised I had more energy than I had felt in a long time. I wanted to get out of bed, and my friends said the sparkle had returned to my eyes. It took eight weeks for the final results: the only organism grown from the specimen was Aspergillus niger.
The infectious diseases specialist was concerned about the risk of liver damage from itraconazole. I remember feeling so desperate to find something that might help that I was willing to accept the risk. I was referred to another infectious diseases clinic. The doctors there explained that itraconazole was licensed for ABPA caused by Aspergillus fumigatus, and they could not be sure whether it would help in my case. I left with a prescription and the suggestion that I try it for a month or two to see how I felt.
Having a diagnosis did not mean having a cure. I continued working until 2007, taking time off for hospital treatment and working half-days when I could not manage a full shift. My performance at work became harder to maintain, and I stepped down from my role as charge nurse in a busy cardiac catheterisation laboratory. I took a leave of absence, then returned for a few hours a week to help with other duties. Eventually, my position was eliminated.
I found the aspergillosis website several years ago and learned a great deal about fungal disease. Much of the information did not seem to describe my situation, because many studies focused on illness caused by A. fumigatus. My symptoms seemed similar to ABPA, but I did not meet the diagnostic criteria. At the time, my treatment included several asthma medicines, itraconazole, and occasional antibiotics and oral steroids.
Itraconazole helped in some ways, but my liver enzyme results rose after I had been taking it for a period, and I had to stop it to give my liver a break. I also wrote that my dose was later reduced and sometimes increased when I had problems. That was my own treatment history, not advice for anyone else. Oral steroids raised my blood sugar, so my care also involved managing that. I took vitamin D and calcium as part of my regimen at the time.
In December 2011, I was told that my IgG and IgE levels were very low and started intravenous immunoglobulin replacement therapy. I found this surprising because people with ABPA I had met through the support website often talked about very high immunoglobulin levels. My doctor hoped the treatment would reduce the number of severe infections I experienced. I was left wondering which had come first: the fungal problem or my weakened immune system.
This has been an extremely frustrating and depressing illness. My life has changed so much. Chronic disease is hard. I try to follow the plan agreed with my doctors and monitor my peak flow and blood sugar, which helps me feel that I have some control. I have become very aware of small changes in my health and try to get help early, but I can still become violently ill.
My pulmonologist did not often see people with a problem like mine, so I shared information with him and we tried different approaches together. Sometimes I felt like a science experiment. I just hoped it would be a long-term study.
Coping with aspergillosis: one patient’s experience
What is it like to discover that Aspergillus is affecting your airways? This patient shares how an aspergillosis diagnosis changed his health, work and sense of independence—and what helped him find a way forward.
This account reflects one person’s experience at the time it was written. Aspergillosis, its treatment and its effect on daily life vary from person to person. Please speak with your healthcare team about your own care.
Coming to terms with aspergillosis
When I was told I had aspergillosis, my consultant insisted that I sit down and brace myself first. That was disconcerting, to say the least. I thought he was about to tell me I had cancer or another life-ending illness. In some ways, he was right: aspergillosis can be life-threatening, and it can certainly change your life.
For the first year or so, my life did not change very much. I continued to work, perform music and do the things I had always done. My medicines changed, and parts of my daily routine changed with them, but I felt I was coping. I was in and out of hospital, but hospitals had already been part of my life, alongside clinics, veterinary surgeries and even shamans’ caves. I thought of aspergillosis as another lung condition I would have to adapt to, and at first I did not understand how much it might affect me.
As time went on, I became more aware of the illness. My health declined quickly, I was taking more medicines, and eventually I could no longer do my job. In 2008, when I was about 50, I retired on medical grounds. I felt as if I had been put on the scrap heap.
Losing work and confidence
Being at home every day while my wife went to work affected me deeply. I was no longer the breadwinner. I had lost my career, my prospects and, for a while, my hope for the future. I became depressed.
At the same time, I was dealing with side effects from the medicines I was taking. I felt bored, tired, nauseated and weak, and I struggled with insomnia. I gained weight and lost interest in the things around me. I felt alone, useless and ill. My pride, ambition and independence seemed to drain away.
I did not know anyone else with aspergillosis, and I had no one to ask for reassurance or advice. I had suicidal thoughts and began taking dangerous risks. My consultant recognised how low I had become and referred me to a psychiatrist and a counsellor. Those first attempts to get help did not reach me, and I sank further into depression and self-pity—feelings I had never experienced before.
If this part of the story feels familiar, please tell someone and seek support. In the UK, call NHS 111 and select the mental health option for urgent help. If you or someone else is in immediate danger, call 999 or go to A&E. You can call Samaritans free, any time, on 116 123. If you are outside the UK, contact your local urgent mental health service or emergency number.
Finding a way forward
It took me about two years to come to terms with my condition and what the future might look like. Several things helped me get some of my life and interests back. My family kept rallying around me with love and support, and friends tried to understand how my health was changing.
I began to look at each day differently and found new hobbies. I had to sell my large, powerful motorcycle, so I bought a boat that the whole family could enjoy. I know what you might be thinking: I could simply slip overboard during a bout of depression. I won’t—I have never liked cold water, with or without soap!
I no longer sing, dance or perform on stage, but I have taken up writing and still play a musical instrument occasionally.
Finding the online Aspergillus community was important. It showed me that I was not alone and that there were many other people living with this illness. Information and support from the website helped me understand more. My consultants and GP learned about my situation too, and were able to offer treatments and advice that suited me. After a very difficult time, I began to adapt, both mentally and physically.
Researching the illness helped me make sense of some of what I was experiencing. At the time, I felt that tiredness, weakness, low mood and feeling constantly unwell could be connected with the medicines as well as the illness. Understanding that helped me plan my days around what I could manage. Everyone’s experience of illness and treatment is different, so concerns about symptoms or side effects are best discussed with your own healthcare team.
Four years after losing my job, my independence and much of my confidence, I could face the world and the future again—though not always willingly. I know more about my limitations, even if I sometimes refuse to surrender to them. I have some sense of where I am going in the universe, I think!
If you are new to aspergillosis, the situation may feel frightening and overwhelming at first. For me, it took time before life began to feel warmer and more familiar again. I have learned to live with my fungal lodger and the baggage that comes with him. It was not easy, but life goes on, so live it as fully as you can.
Keith and Marie: coping with illness as a couple
Keith shares what it was like to care for his wife, Marie, as her asthma and breathing problems increasingly limited what she could do. He writes about taking over the household jobs, the strain this brought to their relationship, and how gardening helped Marie regain a little independence and something to look forward to.
Keith’s account reflects his and Marie’s experience at the time it was written. Marie’s diagnosis was still being investigated then. Every person and family is different, and this story is not a guide to diagnosis or treatment.
Keith’s story
This is a bright light in a very dark tunnel. I suppose I should start with a bit of background.
I met Marie on our first day of school, when we were five. She has had asthma and a “bad chest” for as long as I can remember. We have been married for 39 years, and she is my wife, my partner, the love of my life, my soulmate and the mother of our children. She means everything to me.
Over the years, Marie’s asthma became steadily worse. After many tests at Preston Royal Hospital, her doctors thought they might have found an explanation. In January 2013, she was told she was allergic to mould and was prescribed itraconazole. We were still waiting for blood test results. I wondered whether this meant she had aspergillosis, because so many of the experiences I read about sounded like what Marie had been going through. At that point, though, we did not yet have a confirmed answer.
What could I do? I took early retirement and took over the daily housework—vacuuming, dusting, polishing, ironing and so on. I’m told I do a “fair” job of ironing, although I still haven’t worked out how to get the pointy end of the iron into a bra!
Marie had not worked outside the home since we married in 1974. She had brought up our children and looked after our home. Watching her slowly become less able to do things took its toll on me too.
We live close to the beach at the southern end of Morecambe Bay. For years, we loved walking the dog—and the children—along the shore, enjoying the sea air and sunshine. But by then, it had been more than four years since we had been able to do those things together. Marie could no longer walk far or manage the weekly shop, so I took over the day-to-day running of our home.
That brought its own difficulties. Marie had to sit and watch me do the jobs she used to do, almost like a manager. And, let’s face it, nobody does things quite the way you are used to doing them!
We became depressed and argued more than we talked. Fortunately, Marie loves gardening. Our seaside garden has raised beds made from driftwood we collected from the beach after storms. She could still potter about in the garden, while I kept an eye on her. She would point out which plants needed attention and which did not.
It seemed to help her feel more independent and gave her something to look forward to. At the time I wrote this, she was eagerly waiting for the daffodils to appear and watching for the first buds on the trees.
I came to feel that it mattered to care for the person as well as the illness. Treatment was important, but the things that gave Marie a reason to look forward to the day mattered to us too. When she wanted to try to do something, I did not stop her. I might end up doing most of it, but I made sure she knew how much she had managed herself.
That is what helped us. I hope sharing it may be of some help to someone else.
All the best, Keith and Marie
John G: living with chronic pulmonary aspergillosis
John G lives with chronic pulmonary aspergillosis (CPA). In this video, he shares his experience of the condition.
The video was recorded at a meeting organised by the Global Action Fund for Fungal Infections (GAFFI) in Liverpool in late 2016, where people living with aspergillosis were invited to tell their stories.
John’s story reflects his own experience. Every person’s health and treatment are different. Please speak with your healthcare team about your individual care.
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Colin: living with aspergilloma and recurrent bleeding
Colin describes his experience of coughing up blood, being investigated for tuberculosis, and later learning that he had Aspergillus-related lung problems. His account follows many years of working abroad, repeated episodes of bleeding, procedures to control it and changes in antifungal treatment.
A personal experience from an earlier period
Colin’s account describes his illness and treatment from 1989 to 2013. It is his personal history, not current treatment advice. Medicines and procedures are chosen for each person’s circumstances. Please speak with your healthcare team about your own care.
Colin’s story
While working in Greece in 1989, I started coughing up blood. I had an X-ray at a local hospital and was told I might have tuberculosis (TB). The English company I worked for flew me back to England, where I had more tests and X-rays at a hospital in Oxford. Although the tests were negative, I was treated for TB for six months because my symptoms and X-ray looked consistent with it.
Further tests showed a possible mycetoma in the upper lobe of my right lung, Aspergillus in my airways and positive Aspergillus precipitins. I was told at the time that there was no treatment for Aspergillus.
I felt fit and well, so I returned to work. I was 39, had never smoked and had always eaten healthily. In 1990 or 1991, I gave up alcohol completely. I continued to feel well, although I sometimes coughed up blood. It was usually minor, though occasionally more serious, and tended to happen at night or early in the morning, so it did not interfere with my working day.
I had annual check-ups in Oxford, including X-rays and blood tests. I later developed an aspergilloma in my left lung, but I remained active and felt fit enough to carry on working.
In 2001, I had a more serious bleed one morning. It stopped and then started again a couple of times. I was admitted to a local hospital on a Greek island for a few days, then flew back to England. My Oxford hospital arranged for me to have embolisation in both lungs at Hammersmith Hospital in London.
I returned to work abroad. I was still active, but gradually began to have occasional chest pain, night sweats and a very bad cough. I lost my appetite, began to lose weight and felt less fit.
In September 2003, I had a serious bleed that continued over five days. I went back to hospital, received a blood transfusion and stayed there for five days. I was prescribed itraconazole and continued taking it after I returned to England.
Itraconazole did not seem to reduce the bleeding. I had another embolisation at Hammersmith in February 2004. The following year, I was referred to Wythenshawe Hospital in Manchester. My itraconazole dose was increased. It did not seem to change the bleeding, but my cough improved and I was able to sleep better.
A scan in 2005 showed a cyst in the lower lobe of my left lung and extensive bronchiectasis in the upper lobe of my right lung. Around that time, I was also told that I had finger clubbing. In February 2006, I had another embolisation, this time at Wythenshawe Hospital.
Tests later showed that the Aspergillus was resistant to itraconazole. In August 2007, I started voriconazole. A liver-function test showed that it was affecting my liver, so the dose was reduced. A few months later, I was found to be resistant to voriconazole too. I had begun to feel fitter while taking it, and the bleeding had improved, so I was sorry to have to stop.
In August 2008, I started posaconazole. When I wrote this account in September 2013, I was still taking it. I reported having no side effects, only relatively minor episodes of bleeding while on it, and no bleeding for well over a year. I also felt fitter than I had for some years and had gradually begun to regain weight.
Colin — 29 September 2013
Chip C: a life with asthma, ABPA and bronchiectasis
Chip C shares his experience of severe asthma from childhood, a delayed diagnosis of allergic bronchopulmonary aspergillosis (ABPA), and the changes illness brought to his work, music and daily life. His account is told with characteristic humour and determination.
Chip’s story describes his own diagnosis and treatment over many years. His treatment history is not current guidance, and what helped him may not be right for someone else. Please speak with your healthcare team about your own care.
Chip’s story
I think it all started when I was about three. I was too young to remember, but my mum told me I was first admitted to hospital with severe asthma. After that, I was in and out of hospital like a yo-yo on elastic—often four or five times a year.
When I was six, I was sent to a special hospital in London, where I stayed for three years. I finally came home at nine, to a family and a world I hardly knew, but I adapted. The hospital admissions continued. At eleven, I was sent to an “open-air” boarding school, which was supposed to help children with respiratory problems get the care and fresh air they needed. I still ended up in hospital—just in a different county.
I escaped from that “prison laughingly called a school” at sixteen and continued my career as a regular respiratory patient. At nineteen, after an argument with a girlfriend, I started smoking. My asthma seemed to improve for a while and eventually caused me far fewer problems. I still had occasional attacks and hospital stays, but they became less frequent. For about twenty years, I had almost normal breathing. I stopped smoking again after a few years; I’m describing what happened to me, not recommending smoking as a treatment.
In the meantime, I lived a very full life. I took up martial arts, cycling, rowing, sailing and motorcycling; I drank, partied and got up to the usual things. I ran a business, studied Environmental Science, qualified as a further and higher education teacher, and taught science and music. I learned music, played in bands and duets, and performed hundreds of solo gigs as a guitarist and singer.
From 1998 to 2003, I enjoyed working as a lecturer in science and music. Then my department moved into a building that was still being renovated. Sometimes there was so much dust in the air that I could not see someone walking towards me—spooky! Not long afterwards, I was admitted to hospital with a blocked and collapsed lung.
For the next year, my problems were blamed on asthma. I was taking antibiotics and large amounts of prednisolone, using nebulisers and trying other treatments, but nothing worked.
Eventually, I went to my respiratory consultant and told him forcefully that what I was experiencing was not asthma. My sputum and symptoms were different, and none of the treatment was helping. To my surprise, he agreed. He told me I had ABPA. At the time, he and his colleagues knew little about the condition, so he asked me to research it and report back. That sparked my interest in looking into the science for myself. I’m pleased to say that my consultant and colleagues have since learned a great deal about ABPA and have helped me immensely.
It turned out that tests taken when my lung collapsed had shown large amounts of Aspergillus and a very high IgE level. Because of an administrative error, the results did not reach my consultant for twelve months. That was a year of suffering and, as I put it at the time, becoming friendly with the local undertaker.
In 2004, I was diagnosed with aspergillosis and began treatment with itraconazole and prednisolone. I was told to stop the antibiotics and start the antifungal treatment. I noticed an improvement within days.
The years that followed were difficult, with frequent hospital admissions. In 2008, I had to give up work because I could no longer do my job. It is hard to lecture when you cannot breathe. I also had to stop singing and performing. Sadly, I never learned to cough and wheeze in tune!
My doctors thought I may have encountered Aspergillus during the building renovation, but they could not prove that this was the source. My existing lung damage from asthma may also have made me more vulnerable. My consultant told me that developing this disease was extremely unlikely. I told him I wished I had won the lottery instead.
While I was still working, and in the years afterwards, I studied Aspergillus and its effects on the respiratory system. I researched possible causes, triggers and symptoms, and learned a great deal. I even tried identifying fungi in my sputum with a microscope—lovely!
At the time I wrote this account, I was managing ABPA, asthma and bronchiectasis with help from my clinical team, treatment, nebulisers, a better understanding of my condition and a nagging wife. I was still having bad bouts of asthma or Aspergillus, and was admitted to hospital about twice a year.
I could no longer work, but I was trying to write a book, continuing to research my condition and keeping busy—possibly in a vain attempt to avoid going nuts!
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 account describes her experience over many years, with treatment details from an earlier era. It is not current medical advice. Do not use another person’s story to make decisions about medicines or doses; speak with your healthcare team about your own care.
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.
Becky J: a life transformed by lung transplant
Becky J was 20 and living with cystic fibrosis when a severe, drug-resistant Aspergillus infection threatened her life. After spending more than a year on the transplant waiting list, she received a double lung transplant at Wythenshawe Hospital in 2011.
In an interview with the BBC after her operation, Becky described being able to breathe more easily and return to everyday activities that had previously required careful planning. She was able to travel, go shopping and spend time with friends more spontaneously.
Becky died several months after the transplant from complications. Her family, the medical team and patients who learned about her experience remembered her courage and her determination to help improve treatment for others with serious fungal disease.
This page remembers Becky and the hope her story brought to people affected by severe Aspergillus infection. It is a historical account, not current medical guidance.
Read the original BBC report about Becky’s transplant.