Things to ask at UHSM

[freefaller]

Hello all,

I am expecting to get my appointment with the National Aspergillosis Centre at UHSM in the next month or so and wonder what you all think I should ask at my first appointment? As you may already know I have had blood and sputum tests which show high amounts of the aspergillosis antibodies and a nodule of about 2cm all round has been found in the top of my left lung which after an inconclusive PET/CT Scan was found to be non-cancerous at biopsy. Was offered a second biopsy locally and then would have had part of my lung removed. As I do not have symptoms from the nodule - that I know of and it really does seem to be an aspergilloma I thought this a little too much too soon so decided to go to UHSM on the advice of a BLF nurse and a friend. I would probably have waited until after the second biopsy if this had proved I definitely had an aspergilloma but glad I didn't have it as I was back on antibiotics with an infection after the first biopsy and have not been right since. At present on my fourth or fifth course of antibiotics since then and that was done on June 2nd. I have suffered from Asthma since birth and was diagnosed with bronchiectasis in one lung back in 2010 which now at CT scan done in March 2015 looks to have spread into the bottom of the other lung. It is still termed as mild bronchiectasis - indeed the CT scan report said bronchiectasis was not evident but the consultant on his review of the scan said yes it was there. I seem to have constant infections - nearly always have lovely thick green sputum, cough a lot and generally always productive. Up until December 2014 I managed to go to the gym most days of the week and did a very good all round work out. There followed a few infections and coughs and colds and an enforced break from the gym because of these and long, once in a lifetime family holidays and looking after my elderly relatives and just couldn't manage the work out when I went back last July - tried a few times but my lungs just didn't want to work like that any longer. Complained to Doc at asthma review but not helpful said couldn't give steroids and antibiotics all the time - which I agree with. At my asthma review last December sent to consultant and for CT Scan as no better than i had been in July and all this has been found.

Sorry for long posts but just thought to fill you in on things so that you could suggest relevant questions to ask. I will be traveling to Manchester from the tip of South West Wales so need to get as much sorted as possible at every appointment.

Thanks for your help

Sian

[fcag2001]

Where are you located? Ask about aspirin free diet .lots of forbidden foods but might help . They have sheet they can give you. Lots of exercise seems to be good help. If you are in Scotland love to hear from you.

[freefaller in reply to fcag2001]

No live in Wales - the very tip of South West Wales. Just looked on google earth for route to Manchester and they gave the A40 and A483 and said it was 286 miles and would take 4 hours 45 minutes. They have never driven those roads - it can take 3 hours to get half way! Think we will go the longer but quicker way of M4, M50, M6.

Thanks for the tip. Will ask about the diet. Exercise seems tobe an awkward one as I have already been told no running as this can cause vibration in the lung which could cause the aspergilloma to break up and spread - it seems, walking, yoga and gentle stretching - possibly weights would be OK. That is something else I was going to ask about.

Sian

x

[GAtherton Administrator Fungal Infection Trust in reply to freefaller]

I would write down all of your questions in advance so as to remember them all. You might ask about recording the meeting on a smartphone (if you have access to one) as that might help you remember all that is said - I know our doctors have discussed offering this as an option as it is common to forget or misinterpret much of what is said in clinic.

You will go home with several informative leaflets and the contact number of our specialist nurses for you to ring with any unresolved questions.

We look forward to meeting you!

[freefaller]

Thanks. Mr Atherton. I usually do write my questions down and try and write the answers down too but recording the meeting would be so useful so long as that is allowed. I am really looking forward to meeting the Doctors, nurses and Staff at UHSM. Looked the hospital up on google earth yesterday and used street view and dragged the view in right outside the North West Lung Centre. Looks like parking is at a premium and wee will have to get there early to get a space. Thanks for your reply.

Sian

[rohitkumawat8]

hello . i am rohit allready suffering from lungs fungle infection .....in early morning daily i spit black gray spoty phlegm please suggest ....what i do

[GAtherton Administrator Fungal Infection Trust in reply to rohitkumawat8]

Hi Rohit

I can't really do much other than suggest you see your GP for a referral to a specialist.