Re- Aspergillosis

[Mavary]

Hi friends. I try not to post to much as I feel I’m moaning about nothing compared to what you all put up with.

I was just wondering if anyone had any advice on the Aspergillosis I’ve got.

I went into hospital last year with pneumonia then a few weeks later I passed out where I couldn’t breathe. I went back into hospital and they diagnosed Aspergillosis. That was about May of last year. I was prescribed Anti Fugal tablets. I am still taking them and am still going back for blood tests and check ups. I went the week before last and the Registrar I saw wants me to still take the tablets and still go back again.

I was wondering if I will ever get rid of this or once you have it is it going to last forever.

Thanks in anticipation.

[sassy59]

Don’t know about aspergillosis but it’s always good to hear from you Mavary. Stay in touch. Xxx 😘

[Mavary in reply to sassy59]

Thanks Sassy. I try to help sometimes if I can. How are you keeping?

[sassy59 in reply to Mavary]

I’m ok thank you and Petes not too bad either. You take care. Xxxx😘

[Mandy6513]

Hi. I was in hospital a few months ago and was put on itraconazole for aspergillus. Most of the people I've spoken to have been on it for years and it can have a huge affect on people so don't feel your not important ..There's a support group on Facebook and one of the moderators on there is a doctor so it would be worth your while joining the group. The group is just called Aspergillosis Support.

[Mavary in reply to Mandy6513]

Thank you for that Mandy. I think I’ve joined the group. I’ll see if I get the posts. If not I’ll try again. I hope you get sorted out.

[peege]

Hiya Mavis, lovely to hear from you - but not to hear about your aspergillosis. That's horrible.

All I know is that it can take a while to shift. When my GP suspected that was my problem he said its a condition that has to be managed.

I'm sorry I can't help and hope others with experience of it will be along soon. Take care my dear xxx Peege

[Mavary in reply to peege]

Thanks Peege. I’m fine in myself now. I do get a bit breathless but nothing like when I passed out. I really thought I was going to be discharged when I went to hospital. To be honest it’s a long way to go. I’m not keen on driving too far. I’m fine when I actually drive but I worry about it beforehand.

It’s like I say the people on here have a lot more to deal with including yourself.

It’s now five and a half years since Mike died. I used to ask advice for him on here. I never thought I would be asking advice for myself.

Anyway it’s always nice to catch up with you all. Thanks for replying. Xx Mavis.

[peege in reply to Mavary]

Just to let you know that your Mike isn't forgotten. I remember your posts then - but 5.5 years? Where has that time gone!

All the best to you xxx

[Mavary in reply to peege]

I can’t believe myself how quick it’s gone.

All the best to you too. I’m sure we will chat again one day. Take care Peege. XXX

[skischool]

Mavis,from what i have read about Aspergillus it does take a considerably long time to treat and control.you would probably be best treated within a specialised unit that deals with it,we are fortunate in the North West in that our lung centre of excellence also has a dept specialising in it's treatment.i hope you have or can find one reasonably close to you to take a lead on your care,

Best wishes Ski's and Scruff's x

[Tillystar in reply to skischool]

Hello there, could I please ask where the lung centre is as my partner has this condition and on icu. Many thanks x

We live in the north west too

[skischool in reply to Tillystar]

Wythenshawe hospital Tillystar in Cheshire but on the outskirts of Manchester.here is a link.mft.nhs.uk/wythenshawe/serv...

Ski's x

mft.nhs.uk/wythenshawe/serv...

[Tillystar in reply to skischool]

Many thanks for this. Much appreciated. x

[Mavary]

Thanks Skis and scruffs. I’ve just gone onto the Aspergillosis support group and it looks like I’m on the right treatment. It’s nice to hear from you. Xx Mavis

[skischool in reply to Mavary]

Bingo.often a combination of information from support groups and of course our overworked Nhs usually elicits the right course of treatment. x

[Mavary in reply to skischool]

Indeed! What would we do without our National Health Service.

I think that people with experience of the disease can point you in the right direction. Well I’m hoping for a magic cure that obviously isn’t there.

It’s lovely to hear from you. You take care. X

[Oshgosh]

Don’t have any knowledge of aspergillosis,YOU ARE ENTITLED TO MOAN. Perhaps write a list of questions and take it with you,along with a pen which will clip on your top.

Quite often,some of the stuff is covered in conversation.as the questions are answered tick them off.it works for me,hope it helps

[Mavary in reply to Oshgosh]

Thank you Oshkosh

I will definitely bear that in mind. By the time I get to the Drs I’ve very often forgotten things. I get home and think “ Why didn’t I say this or that.”