THINGS I WISH I KNEW!

The big one, that when a doctor examines you, it’s just a snapshot in time. In five minutes you could sound completely different.

That you can have great lung capacity when healthy but still have really severe asthma.

That how your chest sounds sometimes tells you little about the severity of your asthma flare.

After all this time and many hospitalizations, I still don’t have an action plan.

And especially, LABAS artificially prop up your peak flow. That’s what they do and why they help. But it means that the green/yellow/red zone thing is completely useless for judging your condition. Instead, pay attention to how hard you’re working to breathe. Watch your heart rate (get a pulse ox). The higher your heart rate is, the harder your heart is working to keep your body oxygenated.

[Minushabens Asthma Captain]

The heart rate one is interesting to me. I have recently been diagnosed with bradycardia...I know that I've always had a low heart rate from blood pressure machines but nobody ever seemed bothered about it until recently. I'm told I have the heart rate of an Olympic athlete; sadly the rest of my body isn't keeping up! Anyway, the cardiologist said it was highly likely a consequence of my lung problems, which (as you said in your post) seems completely contradictory & something I just can't make sense of.

[EmmaF91 in reply to Minushabens]

Maybe your body has adapted to your asthma? If you were symptomatic for a long time maybe your CVS changed to reduce demand on your heart (became more efficient etc) 🤷‍♀️. When I’m completely healthy my HR is 60ish (at night usually), when I’m mildly ill it’s 100-110, when actually ill it’s 140-160.

[Minushabens Asthma Captain in reply to EmmaF91]

I have a very strong asthma gene running through me (it killed my dad, has been very problematic for me & my son also has it) so maybe so yes, but when I started to think about it, I thought logic says I need a fast heart rate, not a slow one.

My resting rate is 45-49bpm, but it drops to mid-30s at night. The highest it ever gets is around 90ish. Apart from things like Huddersfield Town's Wembley penalty shoot-out in the play-off final, when it seemed to go up to about 150

[EmmaF91 in reply to Minushabens]

😂 - maybe your doc should prescribe watching penalties for you treatment then 😂

I know it’s kind of like reverse logic. The only time I’ve had low HR is when asymptomatic or extremely acute (almost intubated) so 🤷‍♀️😅.

[Minushabens Asthma Captain in reply to EmmaF91]

It's sort of funny - I have a FitBit & it's always low apart from big football matches!

[EmmaF91 in reply to Minushabens]

I’d definitely ask for a prescription of football matches then! You’re obviously very involved and invested in them and that way nobody can complain about the football being on!😂

[Hidden in reply to EmmaF91]

No it’s wirse, not better. I was in intensive care twice in September. That’s because I needed BIPAP and there were only two places I could use it—ER and ICU.

[Hidden in reply to EmmaF91]

Sorry but I have no idea what a watching penalty is. I do use my heart rate as an indicator. It’s how the body works and it can work for anyone.

[EmmaF91 in reply to Hidden]

Penalties are a football/soccer thing (when there’s a tie at the end they go to penalty shoot outs) - the stress of them raises minushabens heart rate so a joke treatment for brachycardia! I’m glad you’ve worked out a system to tell you when to seek help!

[Minushabens Asthma Captain in reply to Hidden]

I've watched (UK) football all my life, supporting my local team (Huddersfield Town). The match I mentioned was probably the biggest game in all my years watching them for reasons I won't bore you with but it was this game:

en.wikipedia.org/wiki/2017_...

If you want to see the 10 minutes or so (& see a penalty shoot-out), this is the one that sent my heart rate up to about 150bpm!

youtube.com/watch?v=RS1LSio...(Not working as expected?)

If you are into Star Trek or X-Men, you'll also see our most famous supporter looking equally stressed!

[EmmaF91]

I completely get the LABA issue! Keep a record of how much ventolin/LABA you use and how often. If it’s not lasting 4hrs it’s hospital, but what it it’s just lasting 4hr or bringing you from red to green then back to yellow? Or what if you’re in yellow zone and stay there? GP obvs but all they’ll do is tell you to do what you’re already doing. Usually at this point I ring my hospital asthma nurse and they work out a treatment for me (outpatient but not necessarily a&e).

If you don’t get a GP who knows you/understands asthma it can be very frustrating if you’re having night symptoms but are ‘fine’ when they see you. Recent research has highlighted this issue - if you get an early appt you’re more likely to be symptomatic so get more/better treatment then in a afternoon/evening appt. I will admit that when seeing a GP I don’t know and I know I’ve been bad, I try to avoid LABA/SABA until after the appt so they can see what I mean - once they know me I don’t tend to do this!

I’m also a member of the great lung capacity, severe asthma club and until I could say I was under a specialist hospital it caused me many great issues in a&e!

Yes ‘wheeze’ is relied on too much for diagnosis/treatment! For me it’s my last to appear, first to disappear symptom, had silent chest once and ‘almost’ silent chest multiple times (some air movement but not much and my wheeze/cough had disappeared) but cause of my high best PF I was having a panic attack cause I could hit 200 🙄.

For getting a ‘proper’ plan in place your best bet is to print off your own and either fill it out yourself or get a GP/asthma nurse appt and make them fill it out (or make a point of asking for one next time you’re admitted).

I hope things calm down for you soon and that you get a better support team/management plan in place x

[Hidden in reply to EmmaF91]

The forms I’ve seen are all based on peak flow and just don’t work for me. Believe me, I’ve tried. It’s pretty simple. If the asthma worsens in the face of things that should help and my heart rate stays markedly elevated, I go to the hospital.

[Hidden in reply to EmmaF91]

Green/yellow/red mean nothing to me. My peak flow is 560 and I’ve been hospitalized when it was 530. Combination of big lungs, really good muscles and LABA. Completely useless for me.