You know the history asthma, not asthma, asthma, not asthma... breathing pattern disorder (BPD) anxiety... (well that bit I was confident it was not) long covid, freak, alien whatever π€·ββοΈ.
Very long and dramatic as always.. but short version (I'll try) π 2nd opinion yesterday π mannitol doesn't prove asthma, airway hypersensitivity +BPD he tried to bring stuff up like the nasty reg re my mum π€¦ββοΈ managed to keep it shut and just smile or may have had my RBF on not quite sure!
But had spiro with amazing physiologist who happens to do BPD πββοΈ so went through lots and she explained lots we did exercises together!
Very valuable completely explains the extreme fatigue muscle pain, pins +needles, numbness ets. When I know more will share tips.
2nd opinion cons rather reg asked me to stay with original resp team as I'm complex.. (cheers matey, high 5) wouldn't discuss treatment too complex.
So appointment 40 mins later with my actual complex asthma clinic cons who said even 2 days b4 mannitol not asthma... asked how I'd been since mannitol- awful π₯΄. He said definitely asthma π±π± I'm sorry what hold on I need to record this (of course this convo was just in my head the recording bit not asthma bitπ€£) I couldn't believe what i was hearing lol, also BPD which I'm aware of now, and multi fractional disease... not sure if he made last bit up or not?! π€ͺπ.
So all meds stopped an starting again relvar (again) and bricanyl as react to vent (finally their listening about vent) also gp to ref to palpitations clinic as still so tachycardic. So yea an that was short version π€£π it's been a long few weeks!! As I completely trust cons I've emailed gp with recommended changes an referrals needed already!! ππ€£π¦π¦π¦ and proud x
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mylungshateme
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Yay for progress - and π€£ at freak alien!! Definitely not that. But so glad you've made progress, that usual consultant has backtracked as sounds appropriate to and actually that he's now leading it not the so-called specialist who then doesn't like it as different! Yet another tertiary type that is actually not as wonderful as they think!!
When will they learn, and just listen to the patient! Most of us know what were on about and are aware were not typical text book asthmatics. Xπ€£π
So glad you've finally got somewhere! But ugh to the second opinion dr. The only thing he should be asking about in relation to your mum is her RELEVANT medical history eg 'does anyone in your family have xyz conditions that may have a hereditary component'? Otherwise jog on and read Freud in your own time mate. (I had a cons try to tell me all my problems were due to grief. How about you do your job as a resp cons, which you don't seem that great at right now, and stop trying to be an amateur psych and expert level gaslighter/cons-plainer? She really enjoyed telling me that I wasn't actually feeling what I said I was.)
Also glad you have a reliever that may actually help - you're not the only one I've heard of who doesn't get on with vent. And yay for being organised and getting things sorted already re GP.
No idea re multi-fractional, assume he maybe means multiple things going on at once ie asthma and BPD plus post-COVID? Just makes me think of GCSE chemistry and fractional distillation of crude oil which isn't really relevant lol.
I remember you saying about the grief, I don't know who they think they are? Like you said they can't even get the lungs bit right... I'm actually going to see about getting that stupid reg's letter removed from my file as clearly everyone that reads it thinks "oh was a young carer 18yrs ago that's given me BPD hmmm no. Long covid did!!! X
Yeah I wish they'd stop linking BPD with emotions all the time, especially complex situations like family. Yes it CAN be related but really doesn't have to be at all - it can just be mechanical. I have had several physios explicitly tell me this but too often it seems to be used interchangeably with panic/anxiety. They are different things that may overlap with each other and/or respiratory disease!
I actually read a book/memoir by an English professor with adult onset asthma which really annoyed me, because she kept assuming all her breathing problems were emotional and explaining them with literary analysis. I felt like she really didn't understand the physiology of asthma very well. Yes, emotions can be an asthma trigger and she has clearly had some awful experiences, but being triggered by scents is almost certainly not due to deep emotional issues like various literary characters.
When will people get that not one glove fits all?! Its just crazy, but if this is what the specialists are like in attitude no wonder so many have a hard job understanding asthma.
That professor linking breathing with emotion is no more beneficial than saying smoke has to effect every asthmatic or to have asthma you must wheeze... I know don't get us started on that one!!π
The actual physiology of breathing is incredibly interesting if your a freak like me, and explains so much of symptoms if the mechanical side is just not working effectively.
I suspect an awful lot of people right now are living with BPD and actually not asthma as a post covid trigger. Or for some both asthma and BPD.
And actually it makes perfect sense to get BPD come and say hello after either a trauma, stress, or illness as it's your bodies way of compensating. I feel this is my new project and my mission to retrain my poor diaphragm ππͺπ«
On a different note a tent has just blown into our garden ππ€£ be better if was a secret stash of Β£50 notes π°π· but π€π x
Yes very much agree with the BPD. Covid breathlessness is just not the same as asthma. They need a lot of resp physios training up fast! Yes some people will have both asthma and BPD issues - but many people with asthma will be assuming any shortness of breath after covid is asthma issues. Most shortness of breath (generally) isn't asthma. Obviously in your case you do have both as issues at the moment - not helped by them under treating your asthma for so long....
Hurrah!!! Excellent outcome. I hope your experience encourages other unicorns to seek second opinions when necessary. Looking forward to hearing about the BPD tips. ππππ
It was you guys that encouraged me to do so. I wasn't going to bother anyone but gets to a point your so frustrated with being ill and not even able to meet your own daily living activities, there really is no other option if your not getting any answers/support/hope.
It's been a long stressful journey as many endour with complex health needs, but hopefully its the start of next chapter... I don't expect it to be easy but just being believed, listened to, and of course actual diagnosis really is half the battle!! Hope your doing ok? X
It's great to hear positive news, especially after the year we've all had. I'm doing OK, TY. Talking to my brother last night and trying to explain that I had a fortnight of feeling really well only to start the week SOB with no perceivable reason for the change. Well, he did ask. π Onwards and upwards. I've been working on our family tree for a few years now but only found out recently that my grandfather had asthma, he died in the 1940s. I must admit that it made me feel very grateful that I live now and have access to quite a wide range of meds plus quite a good respiratory team (with a couple of exceptions π). It's all relative (no pun intended).
Hmmm, that's quite some while when you're not well eh? I'm still trying to get the post covid resp clinic to agree to refer me across to the asthma clinic. I was wondering whether a second opinion might help speed things up but I guess probably not.
Just hang on in there. It's hard being told different things then to get a diagnosis then it taken away again meanwhile your still suffering. If I can help just p.m me. X
Hi, been following your journey. Glad to hear that you finally feel that you are being listened to.It is very frustrating when that isnβt the case.
Regarding BPD I like to compare altered breathing patterns (which can develop in anyone, not just people with asthma or another respiratory condition) to something external influencing the pattern.
eg when learning to drive you need to move the steering wheel with your hands in a certain position, then maybe developing bad habits.....how do they occur π€π³
We all breathe, but a change can occur, whether mechanical or emotional or both which can slightly change the pattern, and so it goes on .........
when it impacts on our lives, managing to access a professional who can assess the change that has occurred and help you to address it is key to change.
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