Hi

Hi, im new to the forum and have Type II Brittle Asthma which has remained constant for the past 15 years im 38 now), but anyone who knows about this type of asthma will know that constant means living with the uncertainty of a serious and very sudden attack, these happen for me within minutes and no warning signs, In general I would say that I have about 3-4 a year, no link or cause has ever been found and each one leaves me very ill for up to a month.

I just wondered if there was anyone else out there who knows what its like to live with this constant threat? it makes it very hard to plan to go anywhere as I always have to check I have heaps of meds with me and can access a hospital very quickly if needed.

Im lucky where I live in that my GP surgery have some great Nurse Practitioners who I know very well now and can get in to see them whenever I need and are a huge support to me.

Anyway, I hope to hear from anyone and to try and learn new ways of coping with this.

Thanks

16 Replies

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  • Hi Snowy, and welcome to the AUK boards.

    You've certainly come to the right place - there are quite a number of brittle asthmatics who inhabit these fora, and I'm sure they can identify quite strongly with these feelings.

    Make yourself at home, and ask any questions you like - no matter how ""silly"" you may feel they are.

    CathBear

    (Forum Moderator)

  • Thanks

    thanks for replying to me, sometimes I feel like im the only one in the world who suffers from it, I guess its cause everyone I tell (sometimes that includes drs at A&E) I end up having to explain it all as no-one has either heard of it or knows much about it.

    It is usefull now that my consultant has drawn up a Protocol for when I have acute attacks which makes life a little easier at ths hospitals anyway!

  • Welcome Snowy I to am a brittle asthmatic and like you never know one min to the next if im going to have an attack they can come on so suddenly you dont have time to prepare yourself. Ive had alot of help from everyone on AUK and noone minds how silly you think your question maybe if it can be answered rest assure someone wil have ago at answering it for you. Your deffinetly not alone I know sometimes it feels that way I used to feel the same until I joined this site now its like an extended family Take care Kerry-anne xxx

  • hello

    I wrote a reply but kinda lost it.

    I too am brittle asthmatic and yes it does come out of the blue I can recall being in a&e and being asked what brought it on,and the drs dont like it when you shrug your shoulders do they so I said ""wednesday"" mainly cos it was a wednesday,it didnt go down well but they insisted there was an answer! which there wasnt!!

    I have 2 bags in the car one I call week one 2nd 1 week two the first one has medication etc in the 2nd is a top up.I live alone and I like to be organised cos we never know when I'll need them next! bit like being pregnant.

    Im here if you want to chat pm me if you want

    Penny

  • Hello Snowy,

    I am brittle both type I and II - just to be awkward. My lungs are naff alot of the time - I can cope with the chronic side but the type 2 attacks are a different matter. I get them when either sliding down hill over a few days or when I am feeling quite well they come out of nowhere! I too carry epipens along with my neb for the real humdingers. I also have a protocol to wave at the paramedics and doctors which helps most of the time. My GPs are OK but they leave it up to me to juggle my meds if needed and when I ask for things to be amended they usually do. My consultant is great too!

    It is difficult with being on edge all the time but I now don't worry as long as I have my meds with me in my bag, I try to get on with live to the full. If it happens, I just accept it has happened, get better and carry on. I have been brittle since 1994 so had a bit of time to adjust but I have had some really rough times in the past with being ill and also confidence too.

    Hope this helps a wee bit!

    Take care

    Kate

    XXX

  • hi, just wondering what is the difference between Brittle type I and type II? What is the definition of a Brittle Asthmatic. Hope no one minds me asking.

    Sandi

  • Hello Snowy

    I have brittle asthma type two, and I know exactly what you mean about never knowing when the next bad attack is going to come. I am quite lucky in that I know what my trigger is - it is the cold (the virus, not the temperature).

    If I get the cold, it usually results in a hospital admission, sometimes ITU. It is obviously difficult to avoid the common cold. If I am going to visit people, or have them round, I always ask if they have the cold, but you can't avoid it all the time, or else you would never go out or see people.

    I can come into contact with someone who has the cold, and two days later I am in hospital very unwell. I keep antibiotics and steroids in the house to start when I feel the cold coming on.

    I too have a bag packed all the time to take in the ambulance. It IS a bit like being pregnant!!!!

    It is difficult snowy, and I do worry about when the next admission will come, but I try to be stoical about it and not let it ruin my life. It just becomes a fact of life. Like everyone else, I hate being in hospital, and I hate being so unwell, but it is just something to be endured until you get better again......I think the best thing is acceptance - railing against it, getting angry, or getting anxious all the time, doesn't change the fact that brittle asthma means that you can become unwell in a short space of time.

    That is about all I can suggest snowy, hope it helps.

    Love,

    Maz

    xxx

  • sandi, the definition of brittle asthma type 1 and 2 are as follows:

    Type 1

    Patients who consistently demonstrate wide peak flow variation (greater than 40% daily variation for at least 50% of days), despite maximal medical therapy

    Type 2

    Patients with type 2 brittle asthma appear to be well controlled between attacks which are often sudden in onset (sometimes occurring within minutes) and are associated with loss of or disturbed consciousness on at least one occasion.

    A feature of both types is a susceptibility to repeated severe attacks resulting in hospital admission.

  • yes think that justa bout covers the description thanks!

    Mine is type II where by and large its under control on a daily basis but then get sudden attacks that dont build up like normal asthma attacks, I can and quite often go from doing normal things (even sitting on the loo in a public toilet! which was the most embarrasing!!) to being in Anaphylactic shock and unable to breath within a couple of minutes, I cant talk or raise the alarm so have to hope that I have enough time to inject myself or press my buddy button which sends a text to my family telling them im in danger and uses the GPS on the phone to give them a map to where I am, so far touch wood its worked quickly enough!

  • I can sympathize with you. I used to have more type 1 asthma but now seem to be steering towards type 2. I am much better controlled on a day to day basis but when I do go off, it happens much faster than before. I am finding things difficult at the moment as I always thought that things might change at some point. Had my 30th birthday ealier in the year and I think that has forced me to accept that this is probably the way its gonna be and I just need to go with it. Very difficult though, as I'm sure you know how it feels. Maybe it will change but I can't keep waiting for that time to come. Life's too short for that!

  • I can sympathize with you. I used to have more type 1 asthma but now seem to be steering towards type 2. I am much better controlled on a day to day basis but when I do go off, it happens much faster than before. I am finding things difficult at the moment as I always thought that things might change at some point. Had my 30th birthday ealier in the year and I think that has forced me to accept that this is probably the way its gonna be and I just need to go with it. Very difficult though, as I'm sure you know how it feels. Maybe it will change but I can't keep waiting for that time to come. Life's too short for that!

  • thanks Sleepymazza for your very clear descriptions. I have a better understanding now.

    Sandi

  • Hi Karly,

    I think the change in the way our asthma behaves is down the the use in the past of s/c bricanyl / ventolin 24/7! I now only use it when needed but it has changed the nature - more steady state of instability that is liveable with but leaves us open to the hundingers!

    Kate

  • Hi Kate, yes it's weird isn't it. I've been off subcut for 5 years now but never needed adrenaline until this year. I am so much better between attacks now and have quite a good quality of life, in comparison to before, but when I do go off, I have very little warning and it goes from bad to worse very quickly. I now carry adrenaline so it seems to have moved from type 1 to type 2 somehow. Some of the docs think that I am just unable to recognize a deterioration and that it isnt happening any quicker but I know that my condition has changed. Sometimes I do get gradually worse but I take steroids in time and sort it out. Sometimes I get no warning and end up in HDU very fast so I obviously am able to recognize deterioration some of the time. I am convinced that it has changed.

  • There can be a plus side too.

    Hi Smowy.

    My asthma turned brittle about three years ago and I have learned to live with it. Like many others I keep a hospital bag packed and wear an SOS Talisman bracelet.I also have a laminated sheet with all my details on it, including meds and history of hospital admissions in my hosp bag, hand bag and car.

    One of the most helpul things I do is to keep a peak flow chart as this can often show my breathing going off slightly before a major attack so I am much more prepared.

    I hate the restrictions on my life, like never being too far from a hosp when on holiday and making sure I am in mobile phone range in case I do have an attack and need to call for help.

    The hardest thing though was telling the new man in my life about my asthma and though he was a bit thrown at the time he copes well with it now.

    On the plus side I am more likely to acctually do things want to do rather than say to mtyself ""one day I might"". As a result of that, and as cold air helps me breath, I took up ice skating. It is one of the few forms of exercise I can do without affecting my breathing. I have never had so much fun. I have made new friends and met my new fella.

  • Acute Attack Down Under, Lung infection dragging on

    Hi, I'm new here and have found it good to read the posts. I'm about to turn 40 and was diagnosed with asthma at 19 (I've had daily meds since then), but in reality I had actually had it since I was 7 or 8 - it's a long story.

    While in Australia at Christmas I caught a cold a few days before Christmas and quickly started coughing, the typical asthmatic cough. I don't tend to wheeze just cough. On the FRiday evening between Christmas and New Year I coughed and coughed most of the night, I thought I had it under control but couldn't stop it then just after 6am on the Saturday morning I had to admit that I needed help to breathe as I just couldn't do it for me any longer.

    Luckily for me I was on holiday with my folks and we were staying at my brothers house but I felt so bad for waking my brother early on a Saturday knowing he'd wanted a lie in.

    He lead us over to the hospital, luckily just a few minutes away. The traige nurse was awful, I couldn't speak in sentences but wasn't rushed through. My dad and brother had to give my details. I was kept waiting a lot longer than I should have been but once I was through and a nurse saw the extent of the problem I was rushed to a bay where I could be seen from and hooked up to a nebuliser (they tried a spacer but that made me cough more, the dampness of the nebuliser helped me more. It took 4 rounds of ventolin and atrovent nebs to get my breathing under control. They were very good, they did a chest x-ray and an ECG. Turned out I have an infection on one lung which to the doc was almost pneumonia. They gave me strong antibiotics which I finished just before flying home.

    Back home I saw my GP. He wouldn't give me any more antibiotics, said it would clear up on its own. It didn't. It got worse again. So a week later I got another strong antibiotic. Then I've had a week or so without anything again up until Friday when I got a 5 day course of prednisolone.

    I'm so tired of this infection now and the probs my asthma is giving me. It's getting me down and I already have treatment for depression.

    Any ideas?

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