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
Kay A: living with ABPA, asthma and a mycobacterial infection
Kay shared this account around 2011. It describes her personal experience and treatment at that time, not current medical advice.
I was diagnosed with asthma when I was two and with ABPA when I was 45. Looking back, I wonder whether ABPA may have been affecting me earlier: from about 30, I had repeated episodes of atelectasis, or partial lung collapse. Sometimes I could clear the blockage with chest physiotherapy, but occasionally I needed a bronchoscopy.
I had severe asthma as a child and was critically ill at 14, needing a tracheostomy and treatment for pneumothoraces in both lungs. As I got older, my asthma improved. For about 15 years, from around age 40, I had very few symptoms and enjoyed running, cycling and taking part in short triathlons.
In 2005, several problems occurred close together. I caught whooping cough, had a significant mould exposure at a remote fishing camp, and developed an M. abscessus infection. My cough became severe, and I had repeated episodes of pneumonia. My doctors thought the mould exposure had triggered my ABPA, but it was difficult to know how much each illness contributed.
Itraconazole did not help after nine months, so we stopped it. After several years of treatment and specialist consultations, my health improved. I received intravenous and oral antibiotics for the mycobacterial infection, and began omalizumab (Xolair) for asthma and ABPA. Because these treatments overlapped, my doctors and I could not be sure which condition had been driving my symptoms.
I had fewer severe asthma and ABPA episodes while taking omalizumab. In 2011, my allergist and I tried spacing out the doses. After several weeks, my cough worsened and I developed severe atelectasis, which required bronchoscopy. The samples from that procedure did not show Aspergillus.
When I wrote this account, I was back to cycling, hiking and skiing. I still had a daily cough, but it was much easier to manage. I was grateful for the treatments that had helped me return to the outdoor life I loved.
Kay A
John B: a changing diagnosis and life with fungal-related asthma
John’s account is adapted from forum posts he wrote between 2008 and 2011. His diagnosis and treatment changed over that period; this is a historical personal account, not current medical advice.
I had asthma throughout my life. In 2007, I became unwell with what was first thought to be an asthma attack and a possible partially collapsed lung. The symptoms kept returning, and I missed work several times.
After further tests, I was diagnosed with allergic bronchopulmonary aspergillosis (ABPA). I had chest discomfort, mucus and fatigue, and even gentle exercise became difficult. I found it hard to know whether each new episode was asthma, an infection or something else.
I began treatment and had periods when I felt better, followed by setbacks. My blood tests and scans helped my doctors monitor what was happening. I also found support through an online forum, where other people understood the uncertainty and day-to-day impact of living with a long-term lung condition.
In 2011, after assessment at the National Aspergillosis Centre, my diagnosis was changed from ABPA to severe asthma with fungal sensitisation (SAFS). I felt that treatment with itraconazole made a substantial difference to my breathing and general wellbeing. At the same time, my experience showed me how difficult it can be to separate the effects of asthma, infection and treatment.
My story comes from a particular period in my life. Diagnoses and treatment plans are individual, and my experience cannot show what another person should expect.
John B
Sandbach, UK
Joan B: her experience taking Xolair
Joan shared this account after taking Xolair for several years. It describes her personal experience and treatment at that time, not a recommendation for anyone else.
I was diagnosed with Aspergillus niger in 2002. My main problem was severe mucus plugging in my lungs, which meant I needed frequent bronchoscopies—sometimes twice a month. I had tried several treatments, including Sporanox, prednisone, nebulised hypertonic saline, a vest and postural drainage, but the plugs continued.
In 2003, doctors at National Jewish Health in Denver suggested that Xolair (omalizumab) might help, although it was being considered off-label for my condition. My pulmonologist agreed to try it, and I began treatment in April 2005.
At first, I wasn’t sure it was helping. I still needed bronchoscopies, but they became less frequent. My last one was in January 2009. My doctor and I thought Xolair might have made a difference, although it seemed to take a long time.
I also had allergy tests repeated after many years of reacting to grasses, moulds and trees. I no longer reacted to the tests, but I didn’t know whether Xolair had caused that change.
When I wrote this account, I was still using a steroid inhaler. My doctors and I had also stopped Sporanox as a trial, to see what happened.
Joan B
Stewart A: living with CPA and sarcoidosis
Stewart shared this video in 2017, reflecting on an experience he dated to 13 March 2015. At the time, he described living with sarcoidosis, chronic pulmonary aspergillosis (CPA) and a very low CD4 count. His account is personal; it is not a prognosis for other people.
In the video, Stewart looks back on a day when, in his words, he was told he was going to die. He also introduces his daily vlogs, which he began as a 30-day challenge and continued because he enjoyed making them.
Stewart attended the National Aspergillosis Centre at Wythenshawe Hospital. His video offers a glimpse of the fear and uncertainty he experienced, and how he chose to share his journey with others.
Stewart A
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