how long do other brittles leave it?

Ok, heres a random 1...

Being the every day asthmatic who gets annoyed with the lack of control through my lungs, i was just wounderin, how long do other brittle asthmatics leave it before they get help.

I mean i follow my asthma action plan up til the point of red stage, and then think to myself, do i go now, or if i get any worse, or to the point my pf is realy shocking and i cant actualy talk?

Is this just me being the stubborn asthmatic whos fed up with hospitals and try my best to maintain at home, or does most asthmatics out there do the same?!

Just pure curiosity to be honest!

X

6 Replies

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  • I hope this is not relevant right now? If it is you need to be ringing someone!Not brittle, so sorry if I am jumping in where I have no experience (though even at a lower level I know it's hard to judge when to call in the cavalry) but would still say - if in doubt, always get help. If you don't need it, great. If you do, then the sooner the better. However, your plan ought to be very clear on this and remove all doubt, and if you've got up to red then get help, even if you think it's 'only just red' - still red! And if you feel rubbish and everything else on plan suggests you're in red also don't wait for PF to drop - it seems it's not always a reliable indicator all the time, there seem to be lots of people on here who can be really struggling with relatively good PF.

  • I was at gp today, b'coz of al my funny crampy things, and they listened to my chest and did the whole sigh, how do u feel sort of thing...temp up to and they are thinking maybe another infection.

    I am currently on amber, pf for my are a great indicator as my air entry becomes pretty shocking when attack happeneds... They are currently down by 100...

    I dont really want to go in though as it wont be my local hospital so my cons wouldnt be there, i would be letting my dad down as im meant to be looking after my step bro and sis tomorrow...and i was only discharged last week after 8 th admission since april...so really getting fed up with hospitals!! :(

  • Fair enough, I'd be fed up too with all those admissions! And good that pf is reliable - however still thinking if you are worried you need to go in, even if you don't want to let your dad down - won't help if you feel worse tomorrow and have to go in anyway when you're actually looking after your stepbro and sis.

    Sorry if I sound a bit nagging esp as I've not been in this position, just worried - am sure you are experienced with this unfortunately but judging from this forum there are plenty of 'experienced' brittles and less severe asthmatics as well who do leave it longer than they should do.

  • hi charlie

    i would say to go by action plan - if your in the red, please seek help!! understand ur frustration with all the admissions you have had, likewise for me :( part of being brittle i guess, you never know do u sometimes..

    for me i dont ALWAYS follow my plan which annoys my asthma nurse and cons...

    normally FOR ME: i get help if 2 home nebs dont work, pf below half - though this isnt always reliable so dun always go by this, or if too breathless to speak in sentence or if feel getting worse, or if not lasting 3hrly or if acute onset following reaction to nuts or perfume as this has caused resp arrest :(

    i dont have a coloured AUK action plan, i have an individual cons agreed plan based on the above.

    x x

  • Well i followed my plan...ish

    pf dropd to 275 and then i sat there for half hour continplating whether to bring myself in! And well, i did!

    Gd job realy, landed in HDU being monitored by ITU due to rubbish air entry!

    I think if i had 'normal' asthma id b happy as it could b controld, its the severe brittle asthma i hate coz 1 its nt conrold and, 2 i go down hill so quick!

    O well in the best place again i guess...9 admissions now, may as well bring my duvet in at this rate!

  • Sorry to hear ur back in . But I dont believe there is such a thing as normal asthma ..... And people with controlled asthma experience life threatening flare ups and attacks just the same as ""brittles"". So if any body has any concerns and having difficulty managing ur asthma no matter wot label u use please seek medical advice !!!!!!

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