Questions to ask at first appointment 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

[cofdrop-UK]

Sorry you're having a rough time. Don't think I can offer anything constructive re questions re your aspergillosis. Just want to wish you well with your consultation and hope for better times ahead.

love cx

[freefaller in reply to cofdrop-UK]

Thanks cofdrop. I just can't wait to get there now. I just want to get something done. I want to be able to exercise again. Most of the time I feel fit enough to do some exercise, especially when on but am worried about making myself ill again. Have been advised not to do running as this could cause problems - not that I would be able to do a lot. Think I am back to yoga, walking, stretching and light weights. Have not had a reply from my local gym. Think I will just have to leave it until I have been able to ask them what I should do and just go on long walks.

Thanks for your reply.

Sian

[grannyjan]

Hi Sian, I have also been to Manchester for aspergilloma, I have had it in both lungs for quite a few years. Unfortunately as with many other drugs,I found I couldn't take the two anti- fungal drugs they gave me so I can't advise you there. They are very good and they spaced out my appointments so I wasn't travelling every couple of weeks as I was traveling a fair distance too. My lungs can't be operated on so now I just have regular check ups to keep an eye on things. They give you a specialist nurse, and you can ring her anytime and they are all really nice. Hope this reassures you a little. Take care.

GJ x

[freefaller in reply to grannyjan]

That is great thanks grannyjan. How do you manage day to day. Do you find there is anything you can't manage to do? What advice did they give you as regards exercise and diet. I keep trying to take milk products out of my diet but just now am finding the best way to take doxycycline is with milk as other wise I get dreadful acid reflux and the milk really helps. Not sure if that will make a difference to my asthma but everything is worth a try.

Sian

x