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
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