DW: living with childhood asthma and ABPA
DW shares their experience of childhood asthma and allergic bronchopulmonary aspergillosis (ABPA), including persistent chest infections and changes in treatment over time.
This interview describes DW’s own experience and treatment at that time. It is not current treatment advice. Medicines can affect people differently; speak with your healthcare team about your individual care.
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JW: living with ABPA and antifungal treatment
JW shares his experience of childhood asthma and allergic bronchopulmonary aspergillosis (ABPA), including trying different antifungal medicines over time.
JW’s interview describes his own experience and treatment at that time. It is not current treatment advice. Medicines affect people differently; speak with your healthcare team about your individual care.
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Catherine: surviving invasive aspergillosis after a kidney transplant
After a kidney transplant, Catherine developed severe invasive aspergillosis. In this video interview, she shares her experience of the illness and its treatment.
Catherine’s interview describes her own experience and treatment at that time. Invasive aspergillosis and its treatment vary between people. Please speak with your healthcare team about your individual care.
We thank Catherine for sharing her experience and Pfizer for supporting the production of this video.
Jim A: living with ABPA
In this account, Jim A describes his experience of allergic bronchopulmonary aspergillosis (ABPA), from his first episodes of coughing up mucus plugs in the late 1980s to learning to manage recurring symptoms and speak up about his care.
Jim’s account reflects his own experience over several decades. Diagnosis and treatment have changed, and each person’s situation is different. Please speak with your healthcare team about your own symptoms and care.
Jim’s story
In the late 1980s, I developed a lung problem that just would not go away. Every other day or so, I would feel an irritating flutter in my lungs when I breathed. I would cough hard, trying to bring up small plugs. After a couple of months, I persuaded my primary care doctor to refer me to a specialist, because the problem was not going away.
I took some of the plugs with me. The lung specialist recognised the pattern and diagnosed ABPA. I remember being warned that my coughing might get worse for a while. It did, and what I brought up was unpleasant. Then the symptoms settled, and I felt relieved.
Several years later, the problem returned. I was seeing a different healthcare team. I had repeated chest X-rays because the shadows seemed to move, but nobody could explain what was happening. I became frustrated and insisted on seeing a specialist. The specialist was not familiar with ABPA, but agreed to consider the diagnosis and my previous experience. My symptoms improved again.
Some years later, I found a doctor who understood my condition and arranged regular monitoring. Since then, my symptoms have come and gone. At times they have settled without treatment; at other times, I have needed help. For me, they have often seemed to return in the autumn.
Living with ABPA has meant learning to describe what happens to me and to ask questions when I feel my concerns are not being heard. I keep my reliever inhaler available when my chest feels tight. My experience with inhaled steroids has not been helpful, but I know other people’s experiences and treatment needs may be different.
I used to turn compost in my garden and wondered whether that was connected to my symptoms. I cannot know what caused my ABPA. I have changed some of my gardening habits, but this is my personal choice and not proof that compost caused my condition.
My symptoms are an occasional nuisance, and I know others live with more severe forms of aspergillosis. I feel fortunate that my experience has been different. I am grateful to have found doctors who understand ABPA and to have learned how to take part in decisions about my care.
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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