Oldandgray6 months ago

this seems a perpetual problem. You would hope that younger doctors were better trained

I never wheeze and my PEAK flow will only dip slightly. So usually get “ are you sure you have asthma”.

hilary39 in reply to Oldandgray6 months ago

I feel like I see people talking about this almost constantly here and in my other asthma online support group. How do more doctors not know wheezing is not the norm for a ton of us? How do we spread that message?

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Mandevilla in reply to Oldandgray6 months ago

I had almost the opposite problem. Looking back, I realise that I ended up in A&E a couple of times with asthma attacks before I was diagnosed. I was asked more than once 'have you been diagnosed with asthma?' and when I said no, the response was 'well it really looks like asthma, but since you don't have it, it must be stress or a virus.' It never seemed to occur to them that I might have UNdiagnosed asthma!

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Poobah6 months ago

I understand that an asthma patient passport may help. It will detail your personal symptoms and the emergency treatment required and acts as a patient advocate when you're not in a position to debate what's "normal" symptoms in times of an emergency. Some hospital trusts have promoted these and others seem to be catching up.

I attach an image of a APP. Have a chat with your asthma nurse to see if you can work on one together so all you have to do is present it at A&E.

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hilary39 in reply to Poobah6 months ago

This is a great idea, thank you! I have one like this for my adrenal insuffiiciency but not asthma. I'm in France and have an appt with my pulm tomorrow so I'll ask if something like this exists here and if not I can make one and base it on this image so thank you again!! Take care.

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Poobah in reply to hilary396 months ago

🤗 You're welcome!

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Tugun6 months ago

It's very hard to jolt people out of a prelearned "fact" that turns out not to be true - maybe a 2 by 4 plank of wood? People don't like leaving something they have believed to be true - even with a mountain of evidence to the contrary.

The medical profession has been taught that asthmatics wheeze. I once tried to tell a trainer from the ambulance association that not all asthmatics wheeze. That it can be more dangerous if it is silent asthma. His laughing response was that then they would be dead. He was not open. He knew better.

LysistrataAdministrator6 months ago

Oh the eternal problem! So frustrating especially when you don't feel great. I don't feel nervous about asthma attacks themselves, just the horror of having to justify myself and persuade them to treat me when I don't feel good and can't talk properly.

I agree with Poobah, a passport or summary can be really helpful. I've used it and got results - it's not perfect, and if they're really stubborn they won't look at it or will assume anything a patient writes is useless and wasting their time (I've had that attitude at times). But I've found more often than not it can be helpful.

I once had a doctor nearly send me home from A&E before an admission where I landed in HDU! She was very conventional and peak flow focused, but just open-minded enough to read my summary. In the end she found she couldn't ignore where I said that I often responded initially and then dropped again worse. Without that I would have been going home, as my peak flow wasn't too bad and it seemed to be all she cared about to start with.

I had a passport like the one Poobah showed, but I preferred to create my own in the end as it is easier to update and to tailor to me specifically. I often adjust it based on comments/how it's received eg what did they find helpful, did anything lead to misunderstandings, was there anything they focused on that wasn't on there? I originally created it to answer all the questions they ask you when you can't talk, but then found it actually helped them to accept that my presentation was not typical but was still asthma.

It's formatted like my CV aka bullets. I keep it to 2 sides, and it's printed, partly because my handwriting is awful and partly because it looks more official and that helps them take it seriously. I now hand it over very early (paramedics or triage nurse), and keep extra copies on me as it can vanish.

It includes:

- basic details about me and my asthma, name, DOB, GP. Previous admissions in the last year, my best peak flow, the fact I'm under a severe asthma clinic, no intubation/ITU but yes to HDU, the fact that asthma is proven, my adrenal insufficiency when I had it

-summary of my typical presentation, including the fact that I don't typically wheeze, my peak flow is high and may be over 50% predicted, and that I may improve a little with nebs then drop. I will happily use bold and other highlighters for key points

- At the bottom of the first page - NOT the top, I will list all my medication. I don't do it at the top because I want them to look at the rest of it, not look at the meds and ignore the rest.

- 2nd page has 'what's previously worked in attacks', triggers, and when discharge is usually fine for me (NB the ward doctors tend to ignore the document, so it's not that useful beyond A&E sadly - it would be if they read it though!) I also included a section on other conditions and what I do for a living, only because they always ask me that when I can't talk and my job requires explanation!

- At the bottom is a section with blanks that I will write on for every attack - it says when the symptoms started, what I think triggered them, what I've done at home

EmmaF91 has made a template similar to mine that she'll send you if you ask - here's the post about it: healthunlocked.com/asthmalu...

hilary39 in reply to Lysistrata6 months ago

This is super helpful and detailed as always Lysistrata--thank you! What would we do without you? I messaged Emma to ask if I could see a copy of her passport.

A question for you: my spirometry and chest x-ray were normal but I am still a mess from this now several week-long exacerbation. My main symptoms are that my breathing is hard, inhaling is harder than exhaling, I have a constant raspy wheeze in my upper airway, I'm coughing up mucus, and I'm yawning a lot which my body does when it needs oxygen during flares.

I have been tested for VCD in the past and my doctors did not think I have it. Ventolin helps, too, which I think it doesn't typically for VCD but the raspy wheeze in my throat and the fact it's harder to inhale keep turning my thinking back to VCD...

I can't quite figure out what is going on since I feel miserable but my tests look pretty normal. I'm going to see a respiratory therapist soon.

Does your spirometry and peak flow drop when you are in a bad flare or attack?

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LysistrataAdministrator in reply to hilary396 months ago

That's so frustrating I find, when the tests don't match how you feel - makes it harder to get help and also I personally find it makes me doubt myself. And it's awful when you're feeling rubbish and in limbo and they tell you everything is fine!

Some thoughts:

- My peak flow drops, but not below 50% best usually - and when it has those haven't been the worst attacks. I've had severe attacks with dodgy ABGs and my peak flow has STILL been above 50% best. I find it's more helpful to look at the pattern: do I respond to asthma treatment and if so, how long does it last? Going into an attack, I have a pattern of getting great reversibility which doesn't last, which then becomes less and less of a response for less and less time until I fail to respond at all. At that point (and I would advise others *NOT* to wait till then!) I realise I need to get more help. I've read in a paper for work that this is actually quite a typical pattern for asthma.

- My best peak flow is far higher than predicted; I have a great lung capacity, probably due to playing the oboe as a child for years - but that doesn't necessarily make my airways any less twitchy. I suspect my spirometry best is also well above predicted, but I've never been given the chance to demonstrate this to my current team when I feel well. However, 80% of my predicted peak flow is 57% of my actual best. If this applied to you with spirometry, you might find that 80% predicted isn't actually normal *for you* - I have friends who are in a bad way at 80% predicted!

The calculations for predicted spirometry are as far as I know still based on population averages from certain countries a long time ago, and don't necessarily reflect averages (plus, my pet hate from medical staff, average does NOT mean that everyone of the same age, sex and height must be at that value!!! It's just a starting point.) Also, they're meant to take height, sex, and age into account when working out if you have obstruction, and they often don't and just use 70% as a cutoff for absolutely everyone (FEV1/FVC ratio - obstruction when FEV1 value is less than 70% of FVC value). I think my actual cutoff value should be about 83%, and that's assuming I'm totally average!! So you may again actually have obstruction but they're using cutoffs that shouldn't apply to you.

- I don't really do spirometry for acute attacks - thankfully, because I become very bad at doing it properly when I'm at all twitchy and then they try to blame everything on dysfunctional breathing. I think it's more that the asthma is messing with my ability to perform the test properly. I've had one occasion when it had dropped to the 60s predicted and I felt fine, so was able to do the test properly, but it wasn't as good as I thought I was lol. (My consultant ignored this as it didn't fit his narrative and the letter instead included the results of a test I did right at the end of an admission after lots of treatment, which apparently proved my attacks aren't asthma because I don't have obstruction 'acutely'🙄)

-Re the upper airways: I read in another paper for work that there is a theory that upper airway involvement in severe asthma isn't necessarily VCD as a separate disorder - it's more of a protective mechanism that your body does in an attempt to protect the lower airways. If that's what you have, it may explain why your Ventolin is helping as your upper airways might relax when they aren't 'protecting' the lower ones. I also get this too, especially with scent triggers - a mix of upper and lower. Plus the airway is one airway so it can be hard to separate what's going on - it doesn't divide itself neatly as some healthcare staff seem to want! The respiratory therapist should be able to give you some exercises to help; I looked some up online and found I was getting fewer upper airway noises when I had scent triggers. Still need the Ventolin/neb though, so it isn't all upper airway!

I hope this massive essay helps and you get some help/relief soon!

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hilary39 in reply to Lysistrata6 months ago

It was so kind of you to reply so thoughtfully and helpfully--thank you!!!

I recently moved to a new city so I need to assemble a whole new care team and figure out how to work with my new pulmonologist to get him to grasp that I can be in a really bad exacerbation and still have a nomal-ish spirometry especially when I'm on prednisone and taking my Symbicort and Spiriva and Ventolin regularly. He seemed to think this is something other than asthma given my spirometry but I feel like it's definitely asthma since it followed exposure to an allergen, feels exactly like many many other past exacerbations, and improves when I use my inhalers.

That is very interesting about the upper airway involvement not necessarily being VCD as a separate disorder. Do you work with asthma patients as your job? That would certainly allow you to have a high level of empathy with them!!

I think right now I just feel dispirited by how much my asthma seems to be worsening and to not have any idea why other than that it sometimes just happens to asthmatics. I've had so many tests and seen so many specialists that I feel like I have given up hope of finding someone who really understands my strange mix of symptoms and how wildly sensitive I've become to my allergens. This current exacerbation was caused by some friends inadvertently bringing in cat hair into our house as they don't have pets but had stayed with parents who do right before visiting us. My husband has cleaned the house so many times since and we've run air purifiers and had the house professionally cleaned and I am still a mess six weeks later.

It's hard to live this way as you well know!! Thank goodness for this community. It is very helpful to feel less alone-

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LysistrataAdministrator in reply to hilary396 months ago

Glad it helped! It's so frustrating isn't it? I seriously dislike being a unicorn and having to persuade new people that it's real.

I am no kind of healthcare professional, but I do work in medical communications and I've done quite a bit on asthma and COPD so I'm familiar with a lot of the research. It can help my sanity and I try to pass it on when it's useful. I definitely know about not feeling alone!

I really hope you get somewhere with your new team soon!

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