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.
John remembers Ann: diagnosis, specialist care and her final years
John shares his account of his wife Ann’s diagnosis with chronic pulmonary aspergillosis (CPA), their search for specialist care, and the improvement he saw in her quality of life. He also describes Ann’s later cancer diagnosis and his efforts to raise concerns about the care they received.
A carer’s personal account from 2006–2012
This is John’s account of Ann’s care and his experience as her husband. The treatment described took place many years ago and is not current medical advice. Ann’s later cancer was diagnosed separately; this account does not suggest that it was caused by aspergillosis.
John’s account
Ann and I had always known that she had bronchiectasis. In September 2006, after many visits to our local hospital, she had blood tests. On 27 November, we were told that Aspergillus infection had been found and she was given itraconazole for six weeks. We were not given much further information at the time.
At an appointment in September 2007, we were told that Ann’s blood test showed positive Aspergillus precipitins. We understood that no further itraconazole was planned and that she would be followed up, but we were still unsure what this meant.
In January 2008, surgery was discussed to remove what was described to us as an “abscess” in Ann’s left lung. After more phone calls and a meeting with the surgeon’s team, we were told on 21 February that Ann had an aspergilloma and that surgery was the only option. The surgeon requested voriconazole around the time of the operation. A few days later, another consultant told us that no further antifungal treatment would be prescribed because Aspergillus could not be managed.
I searched online for information about Aspergillus and contacted Professor Denning to ask whether surgery was the only option. He replied quickly and advised us not to proceed without another opinion, and to ask for a referral to Wythenshawe. The discussions with our local team had left us distressed and uncertain, so we were grateful to be offered another perspective.
We had our first appointment at Wythenshawe on 16 May 2008. For us, this marked the beginning of a dramatic improvement in Ann’s quality of life. The team confirmed that she had CPA. She first took itraconazole for three months, but her blood tests and X-rays did not change. She then tried voriconazole and experienced many side effects. When posaconazole became available, she changed to that medicine. We saw a marked improvement, and she continued taking it until she died.
Ann’s final illness
Ann developed a fast-growing cancer in the lower part of her left lung, which spread through the lung wall and into her liver. She went into hospital on 24 June 2011 and died on 11 July.
The pain began around her shoulder and lower back. At first, we thought it might be a recurrence of frozen shoulder. Painkillers did not help, and doctors thought she might have an infection, but antibiotics did not help either. Ann was admitted for intravenous antibiotics. The X-ray and CT scan taken when she arrived showed the cancer, which had progressed rapidly since an X-ray only a few weeks earlier.
Keeping records and raising concerns
Ann always wanted copies of letters and reports sent to her GP. We also kept copies of her X-rays and scans on CD. I found it useful to have those records when Ann was seen by different hospitals and consultants, and when we needed to check what had been said at an appointment.
After hospital and GP visits, Ann typed up the notes we had made together. It helped us remember the conversations later. We learned to ask when we did not understand something and to keep a record of the information we were given.
In December 2011, I wrote to the local hospital about our experience. The trust later said that, because the complaint had been made more than 12 months after the events, it would not carry out a full investigation. The concerns were circulated to the staff involved as feedback, and Ann’s case was to be discussed at governance meetings to consider awareness of specialist resources in Manchester and how referral had improved her final years.
I hoped that sharing our experience would help other people find appropriate specialist advice. I continue to pass on what little I know about Aspergillus to anyone who will listen.
My best wishes to everyone reading this account.
John
Stephen E: living with chronic pulmonary aspergillosis
This summary accompanies Stephen’s talk, recorded at a GAFFI meeting in Liverpool in late 2016. It describes his personal experience at that time, not medical advice.
Stephen was initially suspected of having tuberculosis. About a year later, he was referred to the National Aspergillosis Centre in the UK and diagnosed with chronic pulmonary aspergillosis (CPA).
Antifungal treatment brought a strong improvement, but Stephen continued to experience bleeding from his lungs. A procedure called embolisation significantly reduced the bleeding.
The talk offers a brief account of living with CPA, treatment and a serious complication. It is one person’s experience and cannot predict what another person will experience.
Stephen E
Jacqueline: living with chronic pulmonary aspergillosis
This summary accompanies Jacqueline’s talk at a GAFFI meeting in Liverpool in late 2016. It describes her personal experience, not medical advice.
After a series of chest infections that did not clear, Jacqueline was investigated and treated for tuberculosis. She later began coughing up blood and was diagnosed with chronic pulmonary aspergillosis (CPA) at the National Aspergillosis Centre in the UK.
In her talk, Jacqueline describes her diagnosis, treatment and experience of taking several different antifungal medicines. The video offers a personal account of the uncertainty and challenges involved in living with CPA.
Jacqueline
Scott J: living with ABPA and the effects of long-term prednisolone
Scott wrote this account from Norway in 2012, aged 71. It describes his personal experience over many years. His medicines and views reflect that time and should not be used to guide anyone else’s treatment.
I developed asthma when I was seven, and later was diagnosed with COPD. Over the years I had repeated chest infections and took courses of prednisolone and antibiotics.
In 1993, I was diagnosed with lung cancer and had the lower part of my right lung removed. I was told the tumour had been removed successfully. Years later, after becoming very ill with a lung infection, I learned that the earlier tissue result had identified Aspergillus. In 2004, doctors initially suspected that my new illness might be cancer again, but one doctor questioned that diagnosis and further surgery was avoided.
I was eventually diagnosed with ABPA. Prednisolone and itraconazole helped my symptoms for a time. I noticed that my flare-ups tended to happen in late spring or early summer, although I did not know why.
Concerns about treatment effects
Over the years, I developed several other health problems. These included cataracts, torn Achilles tendons, secondary adrenal insufficiency, osteoporosis and a vertebral fracture. My doctors thought long-term prednisolone may have contributed to some of them.
I found it difficult to know which symptoms were related to my lung disease, the treatments or other health conditions. Monitoring blood tests helped me and my doctors follow changes, but I understood that one test could not tell the whole story.
I later reduced my prednisolone use with medical supervision. My experience made me wish that the potential benefits and harms of treatment were discussed carefully, and that alternatives were considered where appropriate. I know that people’s circumstances differ, and my experience is only one person’s.
I shared my story not to frighten anyone or suggest that others should change their medicines, but to encourage patients to discuss treatment concerns with their doctors.
Scott J
Norway — 2012
Lisa M: finding support and specialist care
Lisa shared this account about her experiences between 2003 and 2011. It describes her personal history and treatment at that time, not current medical advice.
In November 2003, I had two ectopic pregnancies within a few weeks. After the second emergency operation, I left hospital with a severe chest infection and was given antibiotics.
By April 2004, tests had found bronchiectasis in both lungs. I was also diagnosed with cardiomyopathy. I reduced my working hours, hoping to manage my energy and stay well.
For the next six years, I was in and out of hospital, often taking time off work and having repeated courses of antibiotics. After a particularly difficult winter in 2010, I felt lonely and frustrated. My family were supportive, but I wanted to connect with people who understood what living with a lung condition was like. I found an online bronchiectasis group, where a member encouraged me to seek a specialist opinion.
I asked my GP for a referral. The specialist team arranged tests and, within a month, diagnosed a mannose-binding lectin deficiency and aspergillosis. I began taking azithromycin and itraconazole. After a couple of months, my treatment changed to Sporanox.
I felt a significant improvement in my energy and general wellbeing. My husband and I were able to make plans with more confidence. I decided to stop working so I could focus on enjoying the time and energy I had.
In October 2011, after clearing our loft, I developed severe pain and spent a week in hospital. When I wrote this account, I said I had been well since then.
My husband has been a wonderful support throughout.
Lisa M
Kimberley W: seeking answers about breathlessness and mould
Kimberley shared this account in July 2013 while she was still unwell and awaiting further assessment. It ends before the outcome is known, so it should be read as an incomplete account of that point in her experience—not as confirmation of a diagnosis.
At an annual check-up in January, blood tests showed that I had hypothyroidism. I started taking Synthroid, but even after my thyroid results improved, I continued to feel unwell.
I had become short of breath, including at work, and had to give up my morning job. I thought my symptoms might be related to my thyroid. Later, my provider wondered whether my medicines were interacting and suggested that I gradually reduce Celexa. A tongue culture was initially reported as negative for thrush, but I was later told that mould had grown when the culture was left longer.
I was prescribed Vfend (voriconazole), but the cost was beyond what I could afford. My family and I applied for help with the cost. I suspected that my illness might be connected to flooding at home and the use of large fans to dry the floors, but I did not know whether that was the cause.
A chest X-ray had not shown what I was worried about. When I wrote this account, I was waiting for another appointment and still felt very ill.
Kimberley W
July 2013