What follows is a brief synopsis of Ann’s and my treatment of her aspergillus with additions when I recall them.
After many fruitless visits to our local hospital (supposed) main consultant Ann had blood tests taken in September 2006.
We always knew that she had bronchiectasis. On the 27th November 2006 we were told that there was aspergillus infection and she was put on Itraconazole for 6 weeks no further info was given to us at this time. Fast forward to appointment in September 2007 we where told that Ann had aspergillus positive precipitins in her blood test no further action re Itraconazole would need to follow up but could not do anything further.??
On 16th January 2008 the subject of surgery to remove “apcess” in left lung.
21st February after many fruitless phone calls and meeting with surgeon and his very rude registrar we were bluntly told, for the first time, that Ann had an aspergilloma in her left lung and the only option was surgery to remove it. At this point the surgeon requested that Ann be put on Voriconazole so she would have some resistence to the aspergillus during and after the operation.
On 26th February the consultant told us he would not prescribe any further antifungal medicine as aspergillus could not be managed in any way.
I put aspergillus into search engine and came up with Prof Dennings name and e-mailed him asking if surgery was the only option. He replied within hours saying not to go ahead and ask for Ann to be referred to Wythenshawe. On hearing that Ann was going for opinion at different hospital the local consultant became very petulant and washed his hands of us (thank God)
The offending consultant is coming to give a talk at our local Breathe Easy Group next year I intend to ask him some very embarrassing questions.
We had our first appointment on 16th May 2008. The start of a dramatic improvement in her quality of life.
We have nothing but praise for the way she was treated by the whole Aspergillus Team.
Treatment at NAC. After confirmation that Ann had CPA she was put on Itraconazole for three months this had no effect on her blood counts and x-rays remained the same. Then came a period of Voriconazole she compiled a whole page of side effects that she had from this but she carried on until Posaconazole became available. She improved dramatically and carried on taking it until she passed away.
Annie developed a fast growing cancer in her lower left lung which spread rapidly through the lung wall and into the liver.
She went into hospital on 24th June 2011 and passed away on 11th July 2011.The cancer started with pain that went from her shoulder to lower back, we at first thought it was a reccurance of frozen shoulder that she had before. The pain did not respond to painkillers and it was thought she may have some infection that also did not respond to the permanent antbiotics she took every day. Ann initially went into hospital to be given intravenous antibiotics but the X-ray and CT Scan she had on arrival had shown the cancer which had made rapid progress since the X-ray taken only a few weeks before.
One thing that Ann always insisted on was that she ALWAYS had copies of all letters and reports sent to her doctor. We also had copies on CD of all her x-rays and any scans. This is invaluable if you have to go to different hospitals/consultants. It also helps,as with our so called local specialist, if there are any mistakes/comments made about consultations. We both feel that everyone should receive copies of all letters as it very difficult at a later date to remember all that has been said. After a hospital or GP visit Ann would put on to computer the notes that she and I had made. Always ask if you do not understand do not have blind faith that your doctor knows it all.
I have written to local hospital regarding the treatment we received and they are going to investigate my concerns. Hopefully some good will come from this and no other patient will have the problems Annie and I had. At the very least they now know of the research going on at Manchester and will get in touch if needed.
Still waiting response from the local NHS Trust. Have been told that my questions have all been sent out to the relevant consultants etc. and that they have been returned. The response is waiting to be signed off by the CEO. I hope they do not expect to give me the “brush off” as this will not happen and I will continue my fight on Ann’s behalf to get some answers.
I have received an answer to my complaint. Because the complaint was not made within 12 months a full investigation was not carried out as the staff involved would be unable to recall events, conversations and comments to which I had referred to. However the following paragraphs in the CEO’s reply give some hope,
“I can confirm that your correspondence has been circulated to the staff concerned, so that they are aware of the concerns that you have, including the surgeon (named) and his registrar. This is on the basis of it being considered feedback, rather than a complaint for investigation and response.”
“I have also asked that your wife’s case be discussed at appropriate Governance Meetings to improve and increase awareness of specialist resources in Manchester and to consider and reflect upon how this improved your wife’s final years”
“The complaint has now been closed as ineligible for further consideration as a result of being out of time.”
Hopefully any one else at local hospital with Aspergillus precipitins will at least benefit from an enquiry to Wythenshawe as to preferred treatment.
I continue to spread the the little knowledge I have regarding aspergillus to anyone who will listen.
My best wishes to all out there who read this account.