I'm new here - and have quite a few questions

I'm new to this forum - and really glad I've found it. I hope you don't mind that my first post has lots of questions (which may be obvious/silly).

Really brief history - had moderate asthma since childhood, which hasn't really affected my daily life too much except when I've had chest infections - I've always been very active, exercise several times a week and occasionally do the odd stupid thing like climbing mountains for charity... Have always been on preventer and reliever inhalers (and pred when chest infections have caused probs) and only hospitalised once as a teenager.

I really thought it was controlled and pretty much got on with things without thinking about it too much (but aware of triggers etc, esp. during the pollen season).

However, two weeks ago, I noticed I was getting more breathless and didn't know why so went to see my GP and had my preventer meds (Qvar) increased - but it continued to get worse, so I was changed to Symbicort 400/12. Then on Monday I needed an emergency appointment with the GP as I was really struggling - I was given a neb there and put on pred 40mg/day - but this wasn't fast acting enough and I was hospitalised that evening with a pf of 150 (normally 500) and rapidly depleting blood/oxygen levels - to say I was scared would be an understatement, especially when they talked about ICU and ventilating me - thankfully on IV steroids/salb and neb on oxygen I made enough of a recovery for this not to be necessary, but things haven't been right since, I'm not responding to the pred (this is day 4) and I'm constantly breathless. I have a doc appointment tomorrow to review where things are, but the GP is already talking about the likely need for hospitalisation so I can have stronger drugs and I'm very scared.

Sorry for the not so brief history, but I thought it might help contextualise my questions:

1. The GP has recently referred to my asthma with the words 'severe' and 'acute' - what do these actually mean in terms of severity (is there some scale?) and more importantly what do they mean for me and my treatment?

2. If it is decided tomorrow that hospital is the only option (and my pf currently isn't looking good) what is this likely to involve?

3. Will this 'level' of difficulty be temporary?

4. How can I find out what has caused this - this I think is part of the problem the docs are having - neither they or I can identify the trigger (nothing's changed and my normal triggers aren't responsible) - is it always possible to find the cause and how do you cope long term without knowing - that's what scares me a lot, because if I don't know, I can't avoid it.

5. (Possibly stupid question - sorry!) - How often and how should you wash a spacer and a pf meter? I've read the instructions but I'm using them so often at the moment (several times a day) I'm concerned that as they need to drip-dry they may still be wet when I need them... And do you use any sterilising fluid (I'm a bit of a clean-freak )?

Sorry for all these questions in a first post, and thanks in advance for any help you can give me with any of them.

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Hello Ratty, and welcome to the Fora. Hope you'll find the support you need here. Sorry things aren't going to plan at the moment! Right...

1) ""Severe"" - there is no particular definition of what comprises ""severe"" asthma, but in this context it would probably refer to the fact that your PF has seen such a drop and you've needed a fair amount of meds to help stabilise things a bit. ""Acute"" simply means it's not been ongoing for months/years - it's happened relatively quickly (as medics we also sometimes call episodes ""acute-on-chronic"" - e.g. if someone has a lot of asthma symptoms most of the times, but then takes a sudden nosedive with a bad attack).

2) Difficult to speculate, because it very much depends on you and the doctors treating you. Often inpatient treatment will consist of regular IV meds and nebs.

3) No-one can predict this I'm afraid - but a lot of people will have a bad patch then pick up back to normal.

4) You may never identify what's caused it I'm afraid - whilst most of the time there will be obvious triggers, sometimes things just slide for no reason.

5) Spacers should be washed once a month (this may differ from what is stated in the instructions, but is recommended by the British Thoracic Society) in normal washing up liquid with hot water. No need for sterilising solution! Depending on how much you're using your PEF meter, I'd probably do it at the same time.

Hope this helps a bit and you pick up soon.

Kind regards,

CathBear

(Moderator)

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Hey Ratty,

Sorry to hear that your asthma is being naughty!! Just wanted to suggest that you get another spacer that you can use when washing your other one. I have two spacers and it takes to stress out washing them because I know I have another one, but you may not want to do this as you only need to wash them once a month. With reference to question 4, I have now had 3 hospitalisations to ICU/HUD that have been caused by no identifiable trigger. It is scary because you cant avoid anything inparticular. You might want to discuss with your doctor about what you can do to help you once these attacks start (as you cant really avoid them) and get an asthma action plan, if you dont already have one. Have you thought of triggers such as thunderstorms, food preservatives or stress??

Hope your asthma gets better!!

Kate xx.

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Thanks Cathbear and smiggle.wig for your welcomes and replies.

The cleaning of the spacer etc. reassures me a bit - I couldn't believe how much variation there was between the advice given in the leaflet, by the pharmacist and on various websites...

I had a pretty bad night last night which was verging on the need for hospitalisation, so I guess I'll just have to see what the doctor says this afternoon. Is it common for pred sometimes not to work? I know the only times I've had it before when I've had chest infections and I've picked up very quickly but it isn't happening this time. What I'm finding now is that I'm exhausted and that in itself is getting me down a bit.

I think it is the not knowing the trigger thing that's the real problem - it's not thunderstorms (although I'm a wimp and they freak me out!!) although I know the humid air pre-storm can be a problem and as to stress, well I'm the least stressed I've been all year (don't suppose there's any possibility of it being a reaction to not being so stressed at all - I know it sounds strange, but I'll consider anything?)

Thanks again for your welcomes/help

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You could be right about the stress sometimes if you havent anything else to stress about then your body will find the slightest thing, if that makes sense?

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Thanks Welsh Andy,

Yep, that does make sense and gives me something to think about. Things have escalated a bit for me and I've been in hospital for the last week following a deterioration and not being able to get my breathing under control at all - ended up with the GP calling an ambulance, so I guess that kinda counts as serious

I'm back home now, and will probably have countless questions...

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Feel like I failed because I'm on pred. AGAIN

Hi everyone,

I just joined today. It seems like you have a really nice forum going here with lots of support. I'm from the US, but have been looking for a place that I can talk about my asthma, since it seems to be a major part of my life, and this is the best forum I've seen. So glad to be here.

So here's my story briefly: my parents don't believe in illness and doctors (Christian Science which is an American based religion from the 1900s kinda related to Chrisianity), because of this I didn't go to doctors hardly at all until I was 19. I've had trouble breathing my whole life. When I was 23 I was diagnosed with moderate persistant asthma, and typically would end up on a week to a month of pred. 3-4 times a year. Then when I was 25 I was diagnosed with one of my heart defects, and when I was 26 I found out I have a heart defect that creates symptoms similar to asthma. Now I have everything repaired that needs to be (ASD closed and a pacemaker). It turns out that some of my issues are probably related to arrhythmias and side effects of asthma drugs making them worse- which I've been trying to work with recently.

So long story short, after having trouble breathing for about 6 weeks.... I went up on advair 250 when this first started (which for some reason was giving me way more heart issues than usual), so I requested to switch to flovent 220, but then was still having trouble so added taking atrovent 4x a day (to avoid levabuterol as it also makes my heart race for hours). I also take singulair and some allergy meds. Then um...the chest pain set in, and the wheezing. But I must say it was very weird this time round, because it was bad but not as bad as it usually gets. Like I was getting chest pain off and on again for several days and wheezing, but I wasn't having trouble breathing while walking etc. But I just couldn't take it anymore as of this morning. That's when I demanded to be seen by my pulmonologist (I've had all of this rather vague conversations with his office staff through this whole thing including them getting annoyed at me calling), and so when I saw him today I ended up with antibiotics, 10 days of pred., and a chest x-ray.

Oh...but here's the thing....I take my meds really consistently, but always end up feeling horribly guilty because I failed again and end up on pred. because I can't breathe. I realize this is probably highly illogical, but was just wondering if anyone could relate to this?

Thanks for reading this long post,

Bee

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bumped for malibu....