Title is because this is what it feels like atm - I climb a small ladder then go down a big snake!!
I'm seeing my cons next week - ughh what fun, need not say I would rather be having root canal or swimming with crocodiles.
I'm pretty frustrated atm: a few weeks ago my breathing was NOT good to the point where when I managed to get a neb at OOH I was actually made aware of what vaguely normal breathing was like; it had been so tight and such hard work till then though didn't last long. But - clear chest and not much help from OOH and A&E (as far as I know your sats don't have to have dropped to get nebs?! And I wish they'd not given up on getting blood gasses). I was on pred which seemed to help a bit as I'm now better than I was but the nights are not brilliant and still having quite a few days where I struggle. My PF is actually worse than it was when I was really struggling, but looking at charts I now realise this is what it does - it hovers around bottom of green zone for a bit and then drops into yellow zone where it will stick for AGES even when I'm getting better - same last time.
In general I feel like I am stuck in the 'call GP' part but I know they are stuck and can't help as they don't know what to do. And OOH etc just did not seem interested - they either told me I'd been on pred long enough so should reduce, while not offering anything helpful except 'carry on as you are and review'. I wouldn't BE there if what I was doing at home was enough! I feel like I am almost always stuck in this kind of limbo yellow zone and that very little has improved over the last couple of years. That's not to say I can't have good times: I do, lungs were great in Cornwall recently for example and showed me a level of control I'd be happy with, but I seem to spend far more time in the not really feeling so great but not bad enough for anyone to want to do something about it zone.
Cons's plan is I can have pred when PF is below 350, but my PF just doesn't work like that (he is however really really into using PF as a guide), and I also have no other options than pred in the yellow zone. So this hasn't really worked and the lovely asthma nurse at the hospital where I go, who is new, agreed with my GP that I should have it and stick on it even though PF had not reached this level - I sounded not so good when on phone to her.
Anyway sorry for the rambling background. My point, if you've got this far, is that I want to ask my cons what I can do about NOT sticking in the yellow zone, as I really don't feel great being like this so much plus it makes me a bit stupid and slow and I am starting a new job where I need my brain! I messed up a previous job partly because of being so tired and SOB all the time that I made silly mistakes, and I don't want to do it again with a job which I actually think I will like and really want to do well in. Points are:
-Cons has made noises about Xolair if IgE is high enough?!! DIdn't really think I was that severe, or severe at all, v confusing esp when he then writes letters about me overusing reliever? He said he wants to collect evidence, and that it would help me when dealing with other drs who think it's anxiety - fair enough, but it means I don't really know what he's thinking about my asthma - he started off with 'over-perception', changed tack last time but letter was not helpful as went on about overuse of reliever? If I were eligible for Xolair (which I doubt, IgE used to be too high for it and is now too low for it, wtf, was tested again last time?) I don't know how I feel about that as with a full time job it seems hard to fit in. Anyone else at the not horrendously severe end/worse than me but working full time had experience of this, just in case it IS in fact an option which I doubt it will be?
-I note that several of you on here seem to have an extra steroid inhaler without the LABA to top up when bad - thought I'd ask about that as better than pred and can't up Symbicort! Are those of you on that already on high doses of combi inhaler? I get the impression I can't have more Symbicort - on 3 puffs twice a day of the 400/12, which sometimes is great and sometimes not.
-Cons mentioned Spiriva as a possibility. Anyone found that helped? And can it be used as well as Atrovent? I use that as a reliever atm and it seems to work well for me but can you have both? Cons doesn't approve of Ventolin so if I can't have Atro as well as Spiriva not sure what I'd do (Bricanyl maybe?)
-Anything else I could ask about? Not asking for medical advice but for things people have tried, below what I think of as the 'really severe' level (stuff like home nebs and subcut etc since thankfully I am nowhere near that level and hope I never will be).
-Confusion re spirometry: he dismisses low results as technique, but I asked nurse in clinic last time speciifically as she knows me and was commenting that the numbers weren't good for me, and she said my technique seemed fine and she thought it was an accurate reading that was just low. Really confusing!!
This is sort of me thinking things out as I type so sorry if it makes no sense. I just feel like I want things to move forward and don't really know how to do it as I find it's really hard to know what cons is thinking! Last appt went better, but still in the dark and want some more workable solutions and for him to listen properly to me re PF (he says he is but I am not convinced given his plan).
I know things won't change overnight but it feels like I have been waiting a LONG time for things to change and that because I don't have bad attacks it's not seen as a priority despite the ongoing QoL issues. I get the impression that how my cons thinks I handle things is not what actually happens, but it's really hard to know. He has never seen me at my worst, which ok is not as bad as many but more than enough thank you and not down to anxiety as I do stay calm, so I think this gives him the idea that I overreact a lot (I don't think I do because I worry I would be dismissed so wait ages before doing anything) and that my worst is what he sees (it really isn't, my lungs would never be so useful as to act up in clinic!)
Thanks for reading if you got this far...brain seriously on holiday, I need sleep! And changing GPs soon...so will have to start all over again with the explanations and hope they are understanding and broad-minded.