Since I seem to moan a lot about appts, just thought I'd say that I had a really good one this morning! Last time I made a bit of a mess of it all but though I was really nervous beforehand this time, I managed to have a sensible (and long - over an hour!) conversation with my cons where we covered a lot of ground.
Apparently I still baffle him lol. I am officially weird hehe.
He agrees with me that the Symbicort seems to be working and that I should carry on with it. I wasn't sure whether he would so this is good. I do have to try giving up the Ventolin till next time as he feels I may be using it so much that it's aggravating things; I'll use the Atrovent instead.
My PF technique is wrong apparently and might be causing falsely high results. Also need more LF tests to check a low result and see if it's lungs or technique. And CT scan.
For once I managed to remember to say and ask everything I wanted, and felt like I was getting good in depth answers (also he talks about the science and doesn't simplify it which I find interesting, plus I appreciate being treated like an intelligent person (my GP does the same).
So...yeah..pretty good! Hopefully next time will be as well. It's nice to have someone consider non-screwed up head possibilities, and he hasn't mentioned the abnormal awareness again. He thinks it's asthma but I jus don't play by the usual rules (always have to be different lol).
Hope anyone else with appts has found them equally useful.
I'm so glad you have come away feeling good. And that you are having a CT scan, I still believe you should have had one sooner! I know it feels good when the consultant starts being the detective with you instead of assuming things each appt and you are an official weird one too!! lol (Of course we already knew you are one of the club.) xx
I'm glad you had a good appointment. Not an RBH appoinment I pressume but your regular cons? Lou x
Glad you had a good appointment. I like it when they treat you like an intelligent human being, my GP does that too. I'm not daft, I've researched the problem before I came to see you and if I don't understand something you're saying to me, I will ask the question!
Interested about the incorrect PF technique, how do you do it and how are you supposed to do it? I have higher than 'normal' readings too and just wondered if I might be doing it incorrectly too.
Hope you continue to get more sense and answers from them xxx
Interesting to hear the cons stating wrong PF technique causing false high results.
Did they say why they were doing the CT scan?
I'm pleased you had a positive appointment. I would be very interested in hearing what he had to say about your peak flow technique as my peak flow is consistently between 700 & 800 despite getting breathless and having a tight chest and feeling like an elephant is sitting on it. I have my cons appt next week - finally after 5 months of waiting !
Hehe yes JF, I think I have the official stamp now! Before it was just my GP surgery but now I have the stamp of a world class asthma guy saying that I am weird and he does not understand my asthma even though he does think that I have it. Lou - yes it was normal cons, though he knows the RBH one and asked how I got on.
He doesn't think I really need the tests the RBH are doing but is happy to wait and see what they say, though I think if he disagrees there will be some interesting exchanges lol...good to have someone really looking into things properly like you say JF. Having said that he doesn't think I need more tests though, he changed his mind and ordered the CT - I was saying how I didn't think even if my lung function did drop they'd be able to tell because I'm so bad at doing them, and he got interested and talked for a whle longer about that, and asked me to show him how I did my PF.
Basically he said the way I do it is TOO short and sharp, almost like coughing into it, which no- one has ever said is wrong before - apparently if you do it that way you can get a high result even with crappy lungs; you're supposed to keep blowing for a bit, like a kind of tail off, so the marker decelerates instead of stopping short. Does that make sense?! Maybe those of us with weirdly high PFs are doing it wrong? Apparently I may only be measuring my large airways and windpipe this way which would not be compromised by asthma.
The CT is for bronchiolitis which I always thought no-one got over the age of about 5, but apparently not. I think he suspected that I might have more small airway involvement than it seems and that the technique thing may possibly explain why my results and symptoms don't match up as I shouldn't be having them the way I do, though he did say that if my bestreally is 700 then I ought to be doing better than 550 anyway.
The LF retest is for something called FEF - mine was only about half of predicted but apparently it can be quite variable especially with technique so he wants to see if I get the same again. I'm glad he's looking into this as I've mentioned being terrible at doing these tests before but no-one has really followed up on it or suggested how I could improve and what I'm doin wrong.
Very useful - thank you. Good luck with your tests.
Hi, as there were a few people on here curious re what my cons said about peak flow readings, thought I'd report back in case it's useful to anyone else.
He said I didn't have to do regular PFs/symptom diaries anymore (yay!!!) but I should take it occasionally and if symptoms are much worse/better. Obviously though I've been trying to practise after what he said about me doing it wrong - unfortunately didn't get a chance to practise there and wasn't sure I was doing it right but found some videos on YouTube about how to do it and watched closely.
Basically it seems I was taking the general instructions very literally when they said 'short, sharp burst' and literally holding it away then doing what my cons said was basically a cough into it - which gets me nearly 700 even when not feeling great! I tried the technique in the videos which seems to involve breathing in, THEN putting your lips round and blowing - still hardish, but not the same as I was doing. This way I don't get more than 550 even after reliever (though still symptomatic so 550 is a bit high - but it used to be in my yellow zone).
Wondering if that means 550 is my real best - still above predicted of 470 but not 700! Will keep trying to see if there's a pattern and if I can tell what real best is, but this is v.interesting. Wonder how I've done it in front of my GP and asthma nurse though as they never corrected me! Still not sure if I'm really doing it properly tbh - shame the AUK nurses don't have a video link or I'd ask them!
It might explain why best PF kept jumping up even when lungs in general seemed to be getting worse.
Anyway sorry for ramble but just thought I'd share as several of you seemed to be interested in this.
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A good experience!
