Peter K: choosing surgery for an aspergilloma

Peter shared this account in 2009, with an update in 2011. It describes his own experience and the decisions made with his doctors at that time. Treatment options and clinical practice may have changed since then.

A collapsed lung and a difficult recovery

In 1974, I was diagnosed with a large pneumothorax—a collapsed right lung. Attempts to reinflate it failed. After several weeks in hospital with a vacuum pump attached, I was transferred to Copenhagen University Hospital.

I had an operation, but complications followed. My blood seemed slow to clot, and I was re-operated on four times in one week. I received several blood transfusions and spent two weeks on a ventilator while the internal bleeding gradually stopped.

Recovery took a long time. I returned to work after three months, but it was more than a year before I felt physically back to normal.

I did not know that the surgery had left a small cavity in the upper lobe of my right lung. Apart from another spontaneous pneumothorax in my left lung—which was successfully treated with open-chest surgery in 1986—I had few symptoms for many years. I returned to exercise, travelled and worked long hours.

That changed in the summer of 2004.

A diagnosis of aspergilloma

I was working in California when I developed a cough and thick, greenish sputum. My GP and I thought it might be a seasonal allergy, but it became worse and the sputum gradually turned brown.

On Christmas Day, I coughed up fresh blood for the first time. My wife and I went to the local hospital. I had another episode while waiting to see a doctor, was sent home and told to see my GP the next morning. During the night, I coughed up blood twice more and returned to hospital.

I was admitted to an isolation room while doctors investigated possible tuberculosis. The tests were negative. I received intravenous antibiotics for several days and was then sent home.

After another episode in February 2005, I went straight to the respiratory specialist who had seen me in hospital. He suggested testing for Aspergillus. The test was positive, and I was diagnosed with an aspergilloma—a mass of fungal material in the cavity in my upper right lung. I was told that the cavity was likely related to my previous lung surgery.

I was 65 and had already been thinking about retiring or reducing my hours. My wife and I decided to leave California and return to Denmark. I continued working as a consultant and adviser, but with fewer hours and some international travel. I became an outpatient at a pulmonary infection department in Hillerød, north of Copenhagen.

I took antibiotics and itraconazole over a long period. By spring 2006, it seemed the infection had cleared, so I stopped the medication. Later that year, I began coughing up red sputum and restarted long-term itraconazole. I continued to have episodes of bleeding.

In autumn 2007, I travelled to Manchester to see Professor Denning. He explained that surgery would normally be considered, but the scarring from my earlier operations made it inadvisable in my case. If the bleeding became worse, he said, embolisation might be an option. My doctors in Hillerød had also discussed surgery but were concerned about the risks.

Despite continuing itraconazole, the episodes became more frequent. By late summer 2008, I was coughing up blood almost every night.

Weighing up an operation

I decided to consult a thoracic surgeon at the university hospital in Odense to understand how an operation might be done. He explained that he would consider keyhole surgery to remove the entire lobe containing the aspergilloma. He showed me a recording of a similar operation, with the patient’s permission.

After I returned to Hillerød, my respiratory specialist and I discussed the options. We concluded that, despite the risks, surgery was the best choice for me. My specialist referred me to Odense at my request.

The operation and recovery

I was admitted to hospital in Odense in November 2008. The operation took five hours. My blood-clotting problem returned, but the team used medicines that were available to control the bleeding. My family was told that the operation had been successful: the affected lobe had been removed without damage to the surrounding lung.

I later developed a serious bleeding ulcer in my duodenum, which was attributed to the stress of surgery. I lost a considerable amount of blood and needed a transfusion.

I was told that the cavity had developed a hard, almost bony wall, but that fungal filaments had penetrated it. The filaments were found to be dead, possibly because of the itraconazole. I was later told that the infection might have become invasive if surgery had been delayed.

Follow-up

Samples from the drains placed after surgery showed no Aspergillus. Blood tests a month later did show antibodies, which was disappointing. A CT scan showed nothing unexpected.

By March 2009, a further scan and blood tests were reassuring. My antibody level had almost returned to zero, and my doctor thought there was no fungus remaining in my chest after the operation.

Update: November 2011

It is now three years since my surgery. For the first two years, I had blood tests, X-rays and consultations every three months at Hillerød Hospital. These have now reduced to twice a year. My most recent tests showed no antibodies.

I am leading a normal life without restrictions. I continue to take part in outdoor activities and travel, mostly for pleasure and sometimes for work. I am increasingly confident that the infection has gone, and I feel lucky to have made the right decision for me.

I am grateful to the surgeon and doctors who cared for me. They were willing to explain the details and discuss the options, which helped me understand my situation and make my decision. I am also tremendously thankful to my wife, Gudrun, who supported me throughout.

Peter
Originally written in April 2009; update added in November 2011.