Anyone with Aspergilloma??

[papageno]

I would be interested in exchanging information with other sufferers as I feel rather isolated.

[Mocarey]

The aspergillus.org site is great for answering all the questions you have. I also click on the fungal trust I have in the " my communities" at the top of the page, next to the heatlhunblocked sign!

[papageno in reply to Mocarey]

thank you so much for the links. I did not know about the fungal infection trust, which I have just joined!

[freefaller]

How have you got on in the last few years Papageno? I am still awaiting confirmation that this is what I have. Have had CT scan which found the tumour and blood and sputum tests which showed a high count of aspergillus antibodies. Had PET/CT Scan which showed that the tumour could not be ruled out as possibly being cancerous so a CT guided needle biopsy was done. Didn't show for sure that this was an aspergilloma but did apparently show it wasn't cancer. The local hospital suggested another biopsy at another hospital with another doc. Why would that be better? Was the radiologist and Doc at the local hospital not good enough and if so why was it done there anyway? Thankfully I was already in contact with BLF and they said that with the serology and the length of time I had had the tumour that I should try to get referred to the National Aspergillosis Centre at UHSM. So cancelled the second biopsy and asked to be referred there. Don't know if I will be successful as we live in Wales and NHS is devolved so may not happen though the Doc did suggest that it was an option when the second biopsy was arranged so hope it will go through.

Would love to hear how you have got on.

Sian

[papageno in reply to freefaller]

Hello Sian,

Good to hear from you. I do hope you are successful in accessing consultation and follow up treatment at the UHSM National Aspergillosis Centre. Referring to your comments about second biopsy at second hospital: this is a sign of seriously good healthcare!! Assessing tumours, little growths, cysts and so can be extremely difficult. Two "doctor" heads are better than one. Second opinion does not imply first one was deficient, far from it. Medicine is not an exact science and will never be because the human body is so, so complex...

My aspergilloma is episodic. comes and goes. But, touch wood, it has been manageable. So I musn't complain!!

Do keep in touch and let us know if you make to Manchester!

In the meantime, all my very best wishes

[freefaller in reply to papageno]

Still wondering whether I made the right choice. Though the person I spoke to at Manchester and the BLF nurse seem to think this was the right choice I keep thinking that I could be having that second biopsy on Wednesday and know something for definite in a week's time.

Also a friend of mine who is a retired consultant has told me I shouldn't really have too many biopsies with Docs who know very little about aspergilloma it is so rare and unlikely that someone this far down the line where we live would know enough about aspergilloma to deal with it correctly and that I should really go to the centre of excellence. Wish I had thought of asking for this when I got the result of the biopsy instead of a week later as I would be 2 weeks into my wait for referral now. That is the problem all this waiting. Hoping the PET Scan would be conclusive and hoping that the biopsy would be conclusive and neither were! I am either going to glow in the dark from all the CT scans or look like an antibiotic by the time I get to Manchester!

Thanks for your reply.

Sian

xx

[papageno in reply to freefaller]

Waiting, with the uncertainty of the diagnostic, is so hard. One big issue, alas, is the fact many lung diseases, which separately do not show the same large numbers as COPD for instance, are more or less ignored by the configuration of care settings. Having to travel from Wales to Manchester [or London] is no joke! While GP surgeries and clinics are probably not geared to manage many complex lung diseases, there should be some service access in an urban area closer to your home.

All my best wishes,Sian

xx

[freefaller in reply to papageno]

There is nothing here at all. Any really sick babies had to travel to either Bristol or London up until we eventually opened a Childrens' Hospital here a year or so ago. That though, is in Cardiff so I presume that sick children in North Wales still travel to Liverpool or Birmingham as that is so much nearer and easier to get to than Cardiff. There is only a bad A road (barely an A Road) going North/South in Wales and the best way is often to get into England and use the motorways if you are travelling North/South I travelled to London previously for diagnosis for another problem and eventually did find that I could have the treatment in Cardiff. Even Cardiff is nearly a 3 hour drive from here - usually 2 and a 1/2 hours but traffic and accidents can make it longer. I do not begrudge the money spent on travelling to find the best treatment from the best place and a centre of excellence such as Manchester is for Aspergillosis is certainly worth it. Just lucky that we can, at the moment still afford it. I would say London is about as far as Manchester from here. We travelled to Manchester airport once to get a cheap flight to visit the grandsons in Florida and the time if not the distance to Manchester was pretty much the same.

By the way in all my research on aspergilloma I have not come across episodic aspergilloma. Do you receive any treatment? How do you know when you have it? What underlying lung problem do you have? I have had asthma from birth and was diagnosed with mild bronchiectasis back in 2010.

Thanks again for taking the time to answer. Forums like these are invaluable because we are talking to people who are actually experiencing similar things and not doctors and nurses some of whom do not always have empathy with your situation let alone sympathise with you. I know most of them are brilliant but the odd ones are a little "off" sometimes.

All the best

Sian

PS Wish I could have thought of a name like yours when signing onto this website. I tried lots but all were taken so reverted to this one as it was my partner's job for 30 years and I tried it too. Too expensive to do as a hobby though. Now thinking of it there are lots of operatic names I could have chosen just never entered my head at the time.

[papageno in reply to freefaller]

Living in London, one forgets how difficult it is for people living in non large urban areas to get good healthcare.

Aspergilloma: the manifestation is coughing blood. Luckily, it does not happen every single day. Monitoring is volume and severity, which above certain marker points would necessitate surgery to remove part of lung.

This was caused by aspergillosis which itself was caused by defectuous building work and water contamination, when my immune system was very low, during treatment for leukaemia. There are some very good building regulations but alas no law enforcement which means absentee freeholders, developers and landlords can do a lot of public health damage.

I was treated for aspergillosis with different anti fungal medicines such as aMbisome and Abelcet.

My most sincere wishes for your appointment in Manchester to come as quickly as possible.

Take care

[freefaller]

Thanks Papageno. I do not cough up blood - at the moment so I suppose this is another reason why there are suspicions about my nodule - I am going to have to give it a name. I dislike the word nodule more than tumour. Anyway, I had already heard that aspergillosis could also be caused by picking it up when one's immunity is lowered from cancer treatments. That is such a bad thing to happen to you.

I hate builders well, hardly hate but have had dreadful problems with them. They can be very difficult to supervise even when they are working on your own home let alone on a rental property or development - that and the fact that landlords and developers are often (always) trying to cut costs means that either the building work is done badly or dangerously, or both and sometimes without adhering to the law. How can all these laws be enforced?

I wonder did you know that sometimes the aspergilloma can be embolised to stop coughing up blood so that may be an option for treatment for people with aspergilloma who cough up a lot of blood without having to remove part of the lung. I dare say that there are some cases where this would not be a suitable treatment but always worth finding an Interventional Radiologist who specialises in embolisation to consult with if ever necessary. My niece qualified as a radiologist a few years ago so that's one of the ways I got to know this. It was also mentioned in one of my consultations - though I have had so many since March I can't now remember which Doctor mentioned it.

I envy you living in London by the way. Easier access to all the theatres, Opera houses and Sadlers Wells - apart from still having to pay of course. We used to live in Oxfordshre and quite often went to see a ballet or opera my other half doesn't like plays as he cannot always hear - though I think now most theatres have a loop system - but that would mean having to wear his hearing aids - long story. He has always loved opera as his late wife was an opera singer and did sing at the Royal Opera House in the chorus. I have always loved ballet and now he does too. We do sometimes get to Cardiff Millennium Centre to see an opera or ballet and went last October to see the ballet Lord of the Flies by Matthew Bourne. As an early birthday treat I went to London to see War Horse in March too. More than a month before my birthday but that didn't matter.

Thank you for your good wishes Papageno I hope you continue in relatively good health for a long time.

Take care of yourself.

Sian.