HELP PLEASE - NEWLY DIAGNOSED ASPERIGLOMA

[redpants8]

I was diagnosed on 16/8/18 , I have been coughing small amounts of blood for 16 months they started off weekly & know increased to every 10 days. I have had 3 cat scans & a bronchoscopy and diagnosed as a fungal ball in my Left lung ( lingual) , I live Queensland Australia and in a state shock ! My lung specialist as suggested leaving it for 3 months ? but as it took him 2 cat scans and a bronchoscopy and letters from local GP and photos on my phone off my coughing up blood before he took me seriously ! I am scared and in a state of shock and disillusioned , he knows I have sever reflux & suggested sorting that out first I had a 24 hr mahomotry recently I saw my general surgeon & he mentioned they would not do a Fundoplication until they sorted my lung problem out , so I am totally confused and it as hd an adverse effect on my mental health with suicidal thoughts sadly !

Any help would be so appreciated I am a Male aged 61 my other symptoms are a dry cough & weight loss! Best John

[sassy59]

Hello redpants, it all seems scary as you are newly diagnosed. I don’t know anything about Asperigloma but would be returning to my doctor and asking for it all to be looked into way before 3 months. It’s clearly very distressing for you and waiting won’t help your mental health. Tell the doctor exactly how you feel.

Keep talking to us on HealthUnlocked as we’re a great community who care very much.

Take care xxxxxx

[redpants8 in reply to sassy59]

Thank you yes I agree & will be chasing this up this week best John

[peege]

Hi, panic not. I was investigated for this at the beginning of my lung issues.

Over here we are given oral anti-fungals to control it. Not all consultants are experts in aspergillosis or bronchiectasis, at least over here in uk. Apparently all asthmatics should be warned to keep away from compost, wet leaves, forest and farm type areas but of course people aren't warned. I tell everyone with asthmatic children (who are closer to the ground for inhaling the spores) that I meet. Animals get it too, usually farm animals.

I'm a little surprised that it took so long to be diagnosed because the aspergillis is detected in bloods and mucus as well as allergy testing.

I gave no idea how your health system works in Oz. If it were me I'd be demanding the anti-fungals.

I found very useful information when I googled for it, only searching UK sites. You could also write aspergillis in the search bar top right and old posts with information will come up.

I wish you the very best for getting it under control. Peege

[Kristicats in reply to peege]

Very interesting peege. Never heard of this before. Worth looking up and taking the info to the doctor to hopefully spur them into action ? Also let them know how badly it’s affecting your mental health. Good luck hope you are feeling easier soon.

[peege in reply to Kristicats]

Whoops, I should have said that I don't have aspergillis, I have asthma and bronchiectasis. Mental health is fine (I hope)! Thanks for you concern 😃

[Kristicats in reply to peege]

Sorry that was my reply to redpants😀

[Mavary]

Hi John.

That’s what they suspect with me. I had pneumonia which I spoke to my Dr about this week. She thinks it’s the aspergillosis that caused the pneumonia. I think mine might have been caused by throwing away my orchids. There were about fourteen of them and they had mealy bugs on them. I tried treating them for about two years to get rid of the bugs but nothing worked so I threw the plants away and poured the soil into a bin liner then threw it all on the garden. I didn’t realise that I would get something like aspergillosis by doing it. I like you also suffer badly from reflux and it’s been a lot worse since being ill. I’m taking loads of medication for that but nothing has been suggested to resolve it. I was treated with steroids for a month after the pneumonia and they are just keeping their eye on me now. My breathing isn’t 100 per cent and I cough up mucus in the morning. I did cough up blood on one occassion but since then I’ve been ok. It is worrying when you cough blood up as you know you shouldn’t. I’ve had problems with what they think could be aspergillosis since the end of April. They are waiting for bloods to come back at the moment. One came back and it has gone down slightly but it’s still high. Let’s hope they can sort us both out. Good luck!

[Annieosb]

Hi Redpants8

I attend Wythenshawe hospital in Manchester UK. I managed to get an appointment after advice from the BLF and having aspergillus antibodies in my blood , the leading specialist in aspergillosis is a Prof David Denning. See if you can contact them in Manchester as he will perhaps be able to hook you up with a person in Oz.

Best wishes

Annie