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.

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