Got my diagnosis letter yesterday. - British Lung Foun...

British Lung Foundation

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Got my diagnosis letter yesterday.

freefaller profile image

Well, things look different when you see them in black and white don't they? I like the way the consultant says "I believe the diagnosis is Chronic Pulmonary Aspergillosis". Apparently I also have a co-infection with atypical mycobacterium and of course my old friend Haemophillus Influenzae. The word Chronic is a word that makes you think isn't it? Doesn't worry me as at the moment I feel fine apart from the coughing and phlegm. Just can't wait to hear what the travel insurance will be now when you hit them with the word "chronic". Weird sense of humour I have got saying I can't wait to hear what they say when I know it will actually cost £'s.

Consultant has also asked that the Doc changes my corticosteroid inhaler to ciclesonide as it has less interaction with Itraconazole. Anyone else on this. Is the dose just once a day? If your asthma gets worse can you double the dose of this?

Sorry, too many questions for this time in the morning.

Love and hugs

Sian

Xoxoxo

23 Replies

Sian I have absolutely no idea to the answers to any of your questions but can hear your worry. Be reassured though that 'chronic' only means persisting for a long time, not that something is serious. xxx

freefaller profile image
freefaller in reply to Toci

Thanks Toci. At the moment feel fine better than I have for about 2 years actually. All my numbers are lower but as everyone says they are only numbers and it is how you feel that counts and I feel great just now - well apart from this miserable weather. Don't mind the rain but it is so dark. Need some sunshine and blue skies.

Love and hugs

Sian

Xoxoxoxxo

hi sian I cant answer anything you ask, in fact I cant even say some of the words you have typed let alone understand lol. but chronic only means its something you have to learn to live with, it doesn't mean your going to get worse, there will be things you can do to prevent it getting worse and keeping it stable.

tam

Thanks Tam. Is it still raining up there? It is horrible here, Rain and Wind - don't mind them but it is so dark and miserable. Will have to get on and do some work. Plenty of tidying up to do - always is!

Love and hugs

Sian

Xoxoxox

Hi Sian. So now you can press on with managing and living with your condition, which you seem to have been doing quite nicely already.Basically we are all chronic on here. It means that it just doesn't go away. The thing with travel insurance is that they want to know that you are stable. If the condition is controlled with drugs etc and you have't been hospitalised for the last six months the loading shouldn't be too bad. You need to shop around. I have travel insurance with my health ins so can't advise on that but I know that there are some on here who can. I believe that there are quite a few people on BronchiectasisRus who also have aspergillosis so it may be worth looking on there for help. Good luck.xx

freefaller profile image
freefaller in reply to

Thanks Stillstanding will look on there and see. Keep meaning to join them but never quite got around to it.

Sian

Xoxoxoxo

in reply to freefaller

Hi Sian,I tried to reply to you earlier but it wouldn't go so am trying again. Do let me know how you get on with bronchiectasis are us. Ilooked at it years ago, couldn't get it to work properly and those whom Idid find were mostly struggling with aspergillosis, strangely enough. So you may get some valuable help on there.

xx

freefaller profile image
freefaller in reply to

Thanks Stillstanding.

Hi Sian, as Toci says chronic only means persistent. Just stay as positive and confident as you always seem to me and there will be many years ahead for you.

Love Suzyxxx

freefaller profile image
freefaller in reply to Suzy6

Oh I do hope so Suzy. My family has a good record for longevity and I don't want to be the one to break it.

How are things with you at the moment? Hope things are settled and you are managing OK.

Over and hug

Sian

Xoxoxox

Hi Sian

Everyone else is right; chronic is just a medical term...you naturally think 'really bad' but it doesn't mean that.

When I sorted my travel insurance for a recent holiday I expected to get hammered on my insurance but was slightly surprised how little it was. I have always had asthma so am used to paying extra for pre-existing conditions & the premium wasn't much more really. Places like moneysupermarket or the meerkats will point you to companies that specialise in it.

Anyway I can't help you with the inhaler as I'm afraid I've never heard of it but I hope it has a good effect for you.

Take care.

Ah yes minushabens got to get another meerkats insurance before my 2 for one cinema tickets offer runs out in March. Thanks for all your help and advice,

Sian

Xoxoxox

Nothing to add Sian, just saying hello :) :)

freefaller profile image
freefaller in reply to O2Trees

Hello! Thanks.

Xoxoxox

Hi Sian

As others have said chronic just means ongoing.

I use ciclisonide inhaler for my asthma. It is a steroid inhaler and I was informed by con it activates when it hits the lungs - so supposedly less throat yeast. It was prescribed once a day but I have taken it twice a day when my asthma was bad and when I told them what I had done they were fine with it. As you have contraindications with your medication I would check it out first, either with your doc or pharmacist.

cx

That is good. Was wondering how many times I could use it if things got bad. To be honest I think any problems I have had are caused by the hi and mycobacterium so if they get that Itraconazole seems to be doing the rest. It will be great to take just one inhaler once a day. Looking forward to starting on it. Have luckily got an appointment with the Doc on Wednesday so will probably be starting it on Wednesday night. Travelling to Wythenshawe on Thursday. Think they are going to do liver function test to see that the Itraconazole is OK with me. Keep looking for yellow eyes but so far so good.

Love and hugs

Sian

Xoxoxox

Sending you love and hugs right back Sian even though I cannot answer your questions. As you say, reading things in black and white is very different and takes a while to sink in. You take care. xxxx

freefaller profile image
freefaller in reply to sassy59

Will do Sassy, thanks.

Xoxoxoxo

Great that you finally have a proper diagnosis. If you're feeling well then the treatment plan must be working, so hopefully you will remain stable now and have an easier time then you've been having.

Well I read you post and reread it all I can say is don't understand it, but I am just very happy that you are feeling well ♥♥♥

Thanks starveycat. Like I say all my numbers are down a little but feeling fine so not complaining.

xoxoxox

Hi Sian, just to let you know I'm thinking of you & know you will get on just fine. I agree with the rest so no point repeating myself.

Keep well & enjoy life 💐

Thanks Jessy.

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