Brittle asthma?

After a pretty rough summer (see below) I have now been told I have brittle asthma - basically they have said i go downhill really fast even when I was fine before - but they haven't really explained what this means for me or anything so first question: what is it and what does it mean?

Secondly, if i have britle asthma does it mean all my life will be as bad as this summer? i guess i'm kind of confused - at the beginning of june i was doing really well...thinking of making a gp appointment to step down my meds and stuff...but then i had a prolapsed disc in the middle of my AS exams so they decided to do a injection in my back under sedation. I was fine - pre op pf was 450 (best 500) and sats 98. i don't know exactly what happened but in recovery i reacted to the sedation, had to be resuscitated and ended up on icu which was pretty scary. so then i improved and went to HDU then paeds where i saw a resp consultant who basically said my asthma was really out of control and changed all my meds. She also said i should be under a consultant which i never had been before so she referred me to my local hospital (i was quite a way from home). So i spent about a week in there and took one of my exams while i was in there, and to be honest i was quite scared by the whole thing, i've been in hospital with my asthma before, but nothing likle that. So i was discharged feeling much less in control than i had before on new meds and my pf was all over the place! So in july i went to india which was really good! I had a weeks course of pred with me if i needed it, and after spending a few days in a really dusty remote village i was kinda struggling so i started that. unfortunately a few days later i had another really nasty attack and ended up in icu in a local hospital (a very different experience) which just threw me even further. i was discharged from there on theophylline, pred and some really strong antibiotics as well as my normal meds and for the first time since my first attack i felt better controlled. I flew home, saw thamesdoc to check all was improving and started to reduce the pred. I had a brilliant time playing in the national scout and guide symphony orchestra, but half way through i finished the theophylline and had an attack the next day. It wasn't too bad, just needed a couple of nebs in a and e and they admitted me overnight for observation as pf was a bit low. good thing they did cos about three in the morning (i often seem to get worse at about 2/3 for some weird reason) i woke up feeling really tight was rushed into resus and then ended up on HDU. I was really getting fed up by this poiunt and kinda scared as well cos it kept happening. The docs there were really good and phoned my local hospital to find out why i hadn't been seen yet. i have an appointment for september now so hopefully should help things.

i guess i basically want to know is this what it will be like for me? no one seems to be able to tell me. my parents are really stressed - its hard for them we had to delay our holiday and stuff and they are constantly worried about me. Also i'm a bit scared about going back to school cos they've never been good about my asthma even when it was controlled (my headmistress sent a letter to my parents complaining about having to send an invigilator to the hospital for me to take my exam this year).

Sorry for the long rambly post its just been a long summer and i'm confused and just hoping it will get better because now i feel like i'm constantly waiting for another attack, and i still feel really tired, i guess that's just my body recovering

Amy

edit: also i'm hoping to apply to study medicine next year - will this affect my fitness to practice?

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I would say forget the label, doctors are quite quick to label people as brittle asthma. They did the same with me last september they told me i was and then said nothing else and it is really annoying.

What i do it tell people i have asthma and take a day at a time. I pace my life i do a little at a time. take today for example, i went swimming i only managed 8 lengths so i stopped and got out so i didnt push it and make my asthma really bad, i came home and rested for an hour, then i had lunch and empted my car of holiday things and now i am resting again for an hour.

last friday though my chest was really off so i rested all morning, went to a coffee shop for some luch then rested the rest of the day.

Take your asthma and your life a day at a time and do what you can manage.

if you want to chat more pm me.

Hope that helps a bit, i am like you i dont know what level my asthma is apart from asthma level.

Plumie

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Hi - I can't answer much of this although I do know the feeling of being fine and then suddenly not and how scary it is. From my experience I can say it does get better but it takes time to adjust and understand your condition and find the right combination of meds for you. There are people here who have more experience and can give a more detailed response.

On the symptoms being worse at 2/3am - yep, I know that one!! Apparently it's due to your natural steroid levels being lowest at that time and it's very common for more severe asthmatics to have problems around that time of night.

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Hi Amy,

Your post struck such a chord with me. I had a horrible time 3 years ago with repeated admissions and a respiratory arrest and (like you) was told I had brittle asthma - no more info about it though! It took about 6 - 12 months for the consultant to get my symptoms under control and up until a week ago I have been pretty well, just the odd attack and if I get a cold/chest infection then I usually end up with a couple of A+E visits.

My advice to you would be to build a relationship with your hospital team, do ask them questions - it is your right to be informed about your treatment plan otherwise you cannot give informed consent for treatment and you NEED to know what the game plan is. They should be able to devise a management plan with you to help you feel more in control and gain more understanding of your condition. Also, if you see your GP/Practice Nurse regularly I would really recommend building a relationship with them.

My team helping me control my asthma are A1 and I really feel I have a say in what happens. Most medical people like having patients who want to be involved in decisions about their treatment and if you say ""hang on - what does x actually mean and how are we going to tackle it?"" they will usually take some extra time to give you explanations and information.

I really hope you feel better soon - oh and by the way, you might want to look up the disability discrimination act as it is actually unlawful for your school to discriminate against you about your medical condition!

Take Care

Fiona