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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Nasilele S: my experience of chronic pulmonary aspergillosis
This summary is based on Nasilele’s video, hosted on YouTube. It reflects her individual experience and is not medical advice.
After being treated for tuberculosis, Nasilele developed a severe cough that did not improve with antibiotics. A CT scan showed a fungal ball in her lung, and she received antifungal treatment for 18 months.
She was referred to the National Aspergillosis Centre in the UK, where her treatment plan was reviewed. The team recommended changing her antifungal medicine and surgery to remove the part of her lung containing the fungal ball. The video description reports that after surgery her fungal infection was cured and her symptoms improved dramatically.
Watch Nasilele’s video about living with CPA.
Nasilele S
Maggie M: seeking answers after Aspergillus was found
Maggie shared this account from Christchurch, New Zealand, in 2011. It describes her experience and beliefs at that time. It is not medical advice, and the events she describes do not establish what caused her illness.
I was working with young offenders when I became unwell. I believed that exposure to Aspergillus fumigatus through the air conditioning and heating in a new prison facility had triggered my symptoms. At the time, I did not know what was making me ill.
It took about 18 months to get answers. I was admitted to hospital around four months after the exposure I suspected, by which time I was very weak and having difficulty walking and coping with bright light. I had already had several courses of antibiotics.
Tests found Aspergillus in material from my sinuses and lungs. I felt that my concerns were not being taken seriously, so I continued to seek help. An allergist/immunologist tested me for several conditions, and I reacted strongly to Aspergillus fumigatus. After that, my other specialists began investigating further.
I had sinus surgery, but my symptoms continued. I felt there was still a problem deeper in my sinuses. A later scan found an area that needed further treatment, and I had another operation.
The illness affected many parts of my life. I experienced pain, fatigue and other symptoms, and I was unable to work for several years. My employer continued to pay my salary for four years, but that support eventually ended. My specialists later apologised for how things had gone.
I also tried complementary therapies, including acupuncture and lymphatic drainage. These were part of my personal approach to coping; they should not be taken as treatments for aspergillosis. I wanted to share my experience because the process of being unwell, seeking a diagnosis and trying to be heard was difficult.
Maggie M
Christchurch, New Zealand — 11 November 2011
Peter A: living with bronchiectasis and an aspergilloma
Peter wrote this account in November 2011 about his experience over several decades. It describes his individual treatment and the medical practice of that time; it is not current treatment advice.
I am 71 years old and have had lung problems since I was 15. My first experience was a spontaneous pneumothorax. I had several partial lung collapses, mostly on the right. When I was 18, olive oil was injected into the pleural cavity of both lungs. When I was about 50, I was told that this treatment had been used on several thousand patients but had never worked.
At about 28, while working in Hong Kong, I contracted tuberculosis (TB). It went undiagnosed for two years. By the time it was identified, I was very ill and coughing up blood almost continuously. I was travelling by ship to South Africa, where the ship’s doctor did not believe in antibiotics and advised me to eat liquorice and plenty of oranges.
When I arrived in South Africa, I was too ill to continue to Botswana and was admitted to hospital in Cape Town. This was New Year 1970. I stayed for five months before I was well enough to travel home.
Before my TB drug treatment was complete, I had a severe episode of coughing up blood. In August 1971, the upper lobe of my right lung was removed.
Years of relative stability
For many years afterwards I was reasonably well and fit, although my lung capacity made climbing above 8,000 feet in the Alps difficult.
In 1986 or 1987, I began to feel tired doing things that had previously been easy. In 1988, after I started coughing up blood, I saw a doctor and was sent to Queen’s Medical Centre in Nottingham. Tests showed bronchiectasis, and blood tests indicated that I had been exposed to Aspergillus.
Doctors suggested removing the enlarged middle lobe of my right lung. The operation was unsuccessful because of calcification of the pleura.
I then had treatment and management for bronchiectasis over several years. Different antibiotics were tried, but none made much difference. I was often tired, had little stamina and was not very fit. Attempts to exercise left me exhausted and sometimes unwell for days.
A CT scan in 1991 showed a small aspergilloma in my right lung, but it had disappeared by the time of a scan six months later.
After that, my condition was fairly stable, though my energy remained low. I had a productive cough and occasional episodes of coughing up blood. My medication was simple: a Serevent inhaler twice a day, and antibiotics when an infection needed treatment. Eventually, I saw my consultant once a year.
My condition worsens
In 2004, my cough worsened, my sputum developed a foul taste, and I became more prone to severe infections, some lasting several weeks. My chest physician in Nottingham tried azithromycin three times a week and other antibiotics, with little success.
In 2006, a CT scan and bronchoscopy found a large aspergilloma in a cavity in the upper part of my right lung. No treatment was given at that time.
A follow-up CT scan in January 2008 showed that the aspergilloma, then measuring 68 mm across, was close to the main pulmonary artery. I was told it might erode the artery and cause fatal bleeding. Since my unsuccessful operation in 1971, doctors had considered me inoperable.
I was prescribed itraconazole, but I was given instructions that did not suit me. I became very sick, lost my appetite and lost a lot of weight.
I searched online and found the Aspergillus website. I asked my GP to refer me to Wythenshawe, and I became a patient there in April 2008. The specialist team gave me a different view of my situation and started me on voriconazole. I had already stopped itraconazole because of how ill it made me feel.
I was also given tranexamic acid to keep in case of bleeding. After several months on voriconazole, I began to lose feeling in my toes, so the drug was stopped and I was switched to posaconazole.
Changes in the aspergilloma and episodes of bleeding
There was a three-month gap between stopping voriconazole and starting posaconazole. During that time, I became very unwell. My cough was severe, I produced a lot of sputum and mucus plugs, and sometimes I brought up as much as an eggcupful in one cough.
A CT scan in August 2009, after I had started posaconazole, showed that the aspergilloma had become smaller. I thought the material I had been coughing up might have been pieces of dead fungus. The aspergilloma continued to break down until January 2010. It then appeared to have gone, leaving a large cavity that was partly filled with fluid.
On 29 January 2010, I had a very severe episode of coughing up blood. It happened on the day of my appointment at Wythenshawe. My wife drove me from Nottingham with a bowl, towels and kitchen roll in the car. I was admitted for emergency embolisation. After another severe bleed, I had the procedure the following Monday. I coughed up about half a litre of blood in 20 minutes.
Several blood vessels were blocked through the femoral artery. The bleeding stopped only after the final vessel was treated through my upper arm. I was then told I could stop posaconazole. In May 2010, I was admitted to hospital for three weeks for treatment with intravenous amphotericin B and Tazocin.
My condition was fairly stable until November 2010, when I began coughing up blood again. The bleeds were moderate but prolonged, and happened about once a month. A CT scan showed a slight change in the shape of the cavity. In April 2011, my specialist decided I should restart posaconazole. He thought that stopping it might have allowed Aspergillus to grow again on the cavity lining and cause the bleeding to return.
The bleeding reduced, but I had another prolonged episode in August 2011. After five days, I phoned the hospital and was admitted for embolisation. Five vessels were blocked through the femoral artery. One vessel that could be reached through the arm was left untreated.
Since then, I have had one or two moderate bleeds. The team may need to consider treating the remaining vessel, but otherwise I do not feel too bad.
Peter A
November 2011
Pat P: recovering from Aspergillus infection in the sinuses
Pat shared this account around 2011. It describes her personal experience and treatment at that time; it is not current medical advice.
In 2006, I began having sinus problems. I started to lose the sight in my right eye, and a doctor became very concerned and set out to find the cause. An MRI showed fluid around my optic nerve that was pressing on it.
I was given high doses of prednisone to reduce the problem. A biopsy of my sinus tissue found Aspergillus fumigatus in my sphenoid sinus. I began antifungal treatment and stopped taking prednisone under my doctors’ care.
I was otherwise in excellent health. My doctors referred me to eye specialists, ENT doctors and surgeons at UC San Diego Medical Center.
They operated through my forehead to remove as much of the fungus as they could, and removed some damaged bone where the infection had spread from my sinus towards the optic nerve. I also had another operation through my nose to clear the sinuses.
All of this happened over about six weeks. My doctors were seriously concerned about how ill I was. I received intravenous amphotericin B, voriconazole and flucytosine. I also had 30 two-hour sessions in a hyperbaric chamber.
I received amphotericin B for about four weeks, flucytosine for about six months and voriconazole for a year. I had MRI scans every few months to check for signs that the fungus had returned.
I wrote this account about five years after the illness. At that point, I was still well. I hoped that sharing my experience might help someone else.
Pat P
Fallbrook, California, USA
Mike F: a diver’s experience of invasive aspergillosis
This summary is based on a report about Mike published in DIVER in November 2010. The original article includes historical medical and equipment-cleaning advice; this page focuses on Mike’s experience. It should not be used as current diving or medical guidance.
Mike had been a diver since his teens and was a fit 56-year-old when he became seriously ill in late 2008. After deep dives, he developed fever, shaking, a dry cough and severe breathlessness. He spent months in hospital, including time in intensive care, before the cause became clear.
Tests found Aspergillus in his sputum. Mike and his wife wondered whether his diving equipment could be involved. His equipment was later tested, and the report described fungal growth inside parts of his buoyancy compensator. Mike was diagnosed with invasive pulmonary aspergillosis and received antifungal treatment.
By the time he was interviewed, Mike’s illness had left him needing oxygen and greatly limited his mobility. He could no longer dive, something he described as a profound loss. He hoped his experience would encourage divers to take equipment cleaning and drying seriously.
The 2010 report raised the possibility of a link between Mike’s equipment and illness. It also quoted specialists who said this was an unusual case and cautioned against drawing broad conclusions. Mike’s story does not establish how common this risk is or show that contaminated equipment caused his infection.
For current equipment care, follow the manufacturer’s instructions. The Health and Safety Executive’s current information sheet advises thorough rinsing, complete drying and clean, dry storage; it also discusses periodic disinfection and choosing products compatible with the equipment.
Based on: Steve Weinman, “Think twice before breathing off a bag,” DIVER, November 2010.
Mick: living with chronic pulmonary aspergillosis and vision loss
This account describes Mick’s experience around 2009–2011. His diagnoses, medicines and treatment reflect that period and are not current medical advice.
I began having health problems towards the end of 2006. I had difficulty swallowing and eating, and I was losing weight. I was diagnosed with dysphagia and emphysema. At the time, I thought food was getting stuck in my oesophagus, and I wondered whether a fungal mass might have been involved. Doctors had diagnosed a hiatus hernia, but I did not know whether the two were connected.
After I stopped smoking, I began having repeated infections. Doctors investigated them with sputum and blood tests, and eventually identified organisms they could treat.
In October 2009, I was admitted to St Thomas’ Hospital with malnutrition and lung infections. I spent eight weeks in hospital, including time in an isolation ward, and also caught swine flu. I was very seriously ill and remember little of the first few weeks.
Doctors found Aspergillus in my lungs and started me on voriconazole. I began to eat again and slowly regained weight, although I was bringing up large amounts of thick sputum. I was discharged on 2 December, still needing a wheelchair.
Changes to my vision
I was taking several medicines for different infections. In March 2010, I began seeing a white square of light after taking voriconazole. By April, my vision had deteriorated quickly: I struggled to focus and distinguish colours.
A doctor arranged an urgent eye assessment and stopped my medicines. Eye specialists investigated the unusual and rapid loss of sight. The deterioration eventually stopped, but I was told that both optic nerves had been permanently damaged. I later registered as partially sighted.
Further lung problems
After my medicines were stopped, I became breathless and had palpitations. I was admitted to hospital again in May. My doctors told me that my left lung had been severely damaged and was no longer functioning, while my right lung was also badly scarred.
I started itraconazole. Later, after I began coughing up blood, I was referred to Manchester for specialist care. At the time I wrote this account, I was very breathless and concerned about fungal balls in my lungs.
Best wishes,
Mick