Aspergilloses

[RabMac]

I've been diagnosed with the above around 3 years ago and added to the COPD my life's quite difficult, I basically now hardly go out due to being breathless all the time, I don't know anything about an emergency pack if my lungs get infected my GP tells me to increase my steroids for a few days,does help a bit but now I'm coughing up Lott's of dirty phlegm,more or less a continuous lung infection, I have an appointment with the respiratory clinic on Monday & really hope they'll help me

[peege]

Hi, welcome to the forum.

That sounds awful and much like a bacterial infection.

Is this your first referral? Who diagnosed you with the copd and aspergillosis?

Are you in the UK? If so I hope you're near Manchester. One of our members goes there for aspergillosis treatment. Also the Foyal Brompton in London is recommended .

I only know a little about asper from looking into it when GP thought I had it from sputum tests.

There are a few here with asper. I'm sure they'll be along soon. Do ask any questions you need to everyone is very supportive. You can also ring BLF helpline for expert advice especially on questions to ask at the respiratory clinic - 03000030555 UK office hours.

I wish you all the best for Monday.

[RabMac in reply to peege]

I live in Glasgow and was diagnosed while being treated for emphysema then COPD, the aspergilloses then was revealed, treatment is very sketchy and nobody seems to know what to give me to battle it,I'm on prednisolone&aan anti fungal capsule which considering I have a permanent infection makes me wonder do they really know what to give me to combat this,I'm 58 used to be very active now I hardly get out,very depressing if I'm honest

[peege in reply to RabMac]

One bit of info from the helpline is which hospital or specialist in Glasgow is experienced in aspergillosis. Here in England we can self refer. (I haven't done that myself. Crap professor/consultant though)!

The antifungal will be to control and manage the aspergillosis. It won't help with infections.

I do know your resitance will be low so your body can't fight the bugs.

The asper and copd are separate issues .

Whilst you've got mucus in your lungs it can easily become infected if it hangs around in there, so you'd need antibiotics. A proper antibiotic not b*** dy amoxicillin! One course of antiBs may not be enough to clear a long established infection.

Did you have a CT scan? i hope you get another. If you do, get them to show you it and explain everything on it. Is how much and how widespread is the asper. It could be in one lung only.

Please do ring BLF today so you are armed with questions. Take someone with you on Monday if you can to be a second pair of ears or take notes.

We absolutely have to stand up for ourselves & not to be written off. What we don't ask we don't get - or very rarely in the NHS.

We absolutely have to be proactive to get the treatment we deserve.

We absolutely can't sit and wait to be rescued because that just ain't going to happen either. Very hard when you're feeling lost and depressed I know only too well and I'm not half as poorly as you.

Once you know where & how much asper you have you can get an exercise regime sorted. In the meantime get some vitamins in to help boost your immune system. P

[Hidden]

Good Morning - You sound as if you are really suffering. My husband only has severe COPD so I can't really offer any useful advise. But I am thinking it might be a good idea to ring the helpline and ask their advise about what sort of treatment is available and what you should be asking etc. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. The best of luck on Monday, lots of love TAD xxx

[rubyred777]

Welcome to the site RabMac

I can't help you out with your condition.

I'm sure some other members will be along to help you out. It doesn't sound like you're being treated as well as you could be, for your aspergillosos. What stage of copd are you? I am moderate.

Hopefully you'll hear from some members, that can help you out more.

You should definitely make up a list of questions to take with you Monday.

Good luck

Rubyxx 😊 😊

[casper99]

Hi RabMac and welcome to the board.

I don't have any advice but, just wanted to say how sorry I am to read how much you are struggling.

I hope someone on here has some advice to help you get the right treatment to get you back on track.