Accepting severe brittle asthma?!

Hiya all,

some of you know me, I'm 31 and have had asthma since a teenager. I had pneumonia a year ago and the asthma got a lot worse since, been diagnosed with severe brittle asthma last July.

I had a sudden attack a week ago and went to my walk in centre where my asthma nurse was on duty, lucky for me, and she sorted me out there although she said it was a close call for hospital.

It was the start of yet another chest infection that started it all off and after a week of 40mg preds and antibiotics I feel a lot better.

When I went for a check up yesterday she said I have to accept that I'm severe and brittle and she, like the con, would recommend a low dosage preds long term as I go down so fast and have had pneumonia and 10 chest infections within the last 13 months.

She said I should be lucky to be alive and rather put up with a low maintanance dosage of preds rather than risking my life.

I was quite shocked to hear how bad I am ""supposed to be"" because I am really happy with my life at the moment and just get on with things.

It's just that I don't want to be bad but I think I push these things asside, must be a coping mechanism.

Am I being silly? How can I accept something I don't want to accept? Has anyone on here been through this?

Love Lydia xx

11 Replies

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  • Hi lydia

    You sound kind of like me to be honest i would forget the label you have been given it does not help you. I have been told by many doctors and nurses over the years i am severe asthma, brittle asthma etc but only consultants at specialist centres have the authority to say what you are. I would just stick to saying you are asthmatic. I am also on maintance prednislone of 20mg and it keeps me at home the majority of the time. I just need IV magnesium boosters three to four times a year which is a hospital admission.

    Asthma is about self managing and seeking emergency help when your reliver medication stops working or when your peak flow has been dropping over 2 or 3 consective days.

    You could push to get an offical diagnosis at a specialist centre but that is up to you, for me it would be a nightmare for me to get one so i am just sticking to saying i am asthmatic on high levels of treatment. My breathing affects me day to day and i can do very little due to medication side affects but i am thankful i am alive. I do get very down at points and wonder why me? But i have started keeping an achievement book and set myself one task a day - for example read a chapter of a book, check my emails or watch a tv programme. These help me to have a point to my life. I do have other health problems so it not just asthma but living with any long term condition that results in you being disabled is very hard and challenging. Talk to people about how you feel can help although some people wont be able to help you because they wont understand. I am quite happy to pm you from time to time.

    Hope my woffle is of some use to you and remeber yes you are asthmatic but you are still you in side!

    Plumie

  • It's a difficult condition to handle. I'm only step 3-4 and have found it hard to accept.

    Plumie's right though. Asthma's the condition, it doesn't define you. Hope things start to look up soon.

  • I know how you're feeling, I found out that my asthma is severe brittle 2 years ago and I am only just getting the hang of things. I found not thinking about what I should feel like meant I didn't feel so depressed about things. I think sometimes a good attitude can really be better than any medicine, maybe forgetting about ""What if"" and what could have been, and focus on what is and what I have and there are some good things there too...

    Hope you get there xx

  • You said you are quite happy with your life, so what has changed? Nothing is the answer. Your Asthma isn't you, you are still the same person. Taking long term low dose Pred is worth it, without it my life would be really awful, so I would advise you follow that route if your medics have suggested it.

  • Hi Lydia, sorry to hear that you haven't been doing all that well, hope things improve.

    Got to say that I agree completey with Plumies post.

    Asthma is a problematic condition and why some medical professionals who aren't neceasarily experts in asthma like to pigeon hole us and comment on our condition the way that they do, I don't really know. I like most have had my condition described as many types of asthma, ultimately all I know and all I care about is that I have asthma and at the moment it isn't well controlled.

    Obviously some people do have specific types of asthma and once properly diagnosed then great, but why then do people have the need to state because you are this or that you should be doing certain things and feeling in a certain way.

    I very rarely feel the same 2 days running regardless of what I have done and what medication I have taken.

    Every day is different, every episode / attack effects me differently and I know that I don't like told how I should feel and act.

    Mark

  • lydia i hate labels. prefer the term sh*t asthma and i hated the thought of long term pred and refused it for years, til i had no option. test showed unfortunately i now have lung damage and scarring.... if i took the pred earlier it may have prevented some of the damage. .....

    my resp team are excellent they will discuss all treatments, possible benefits and side effects.... they say at end of day decision is ur's. as u the one living with the asthma and side effects.....

  • the term brittle asthma was given to me years ago and i still cannot accept what it means my life seems to be at a holt because i cannot do things i want to do and have to rely on a carer and my family and havent worked since 2006 i would give anything to take the term away from me

  • Lydia- are you under a tertiary center eg Brompton, as technically general resp cons should not be diagnosing 'brittle asthma'I was diagnosed 13 yrs ago and that was certainly the case then and up to fairly recently as far as i am aware., the fact that you are not on long term pred does make me think this may not be a true diagnosis but maybe severe asthma would be better.Whatever the title thats all it is it doesnt change you as others have said-all it wil do is amyb make other medical professionals eg hossie drs aware that your asthma is severe and could deteriorate quickly and that you are very prone to infection/ you are exactly the same person as before they gave youthat label so carry on as before and continue to enjoy life:)

  • Lydia- are you under a tertiary center eg Brompton, as technically general resp cons should not be diagnosing 'brittle asthma'I was diagnosed 13 yrs ago and that was certainly the case then and up to fairly recently as far as i am aware., the fact that you are not on long term pred does make me think this may not be a true diagnosis but maybe severe asthma would be better.Whatever the title thats all it is it doesnt change you as others have said-all it wil do is amyb make other medical professionals eg hossie drs aware that your asthma is severe and could deteriorate quickly and that you are very prone to infection/ you are exactly the same person as before they gave youthat label so carry on as before and continue to enjoy life:)

  • Lydia - I have said to folk in the past who have questioned labels given to my son (not asthma related - just other stuff) that the labels don't define who he is - they just help to describe some stuff he struggles with..........

    hugs

    Fee

  • Hi everyone,

    thank you all so much for your replies and messages.

    All in all you're right, it's a label and I should carry on enjoying my life, it's just when I feel great I go down so fast and it frightenes me sometimes that one minute I'm brill and the next even a neb won't help:-(

    well, haven't been on preds long term as such but was more on them then off over last 13 months(my asthma nurse showed me on the screen last week). So I'll see what my con says in march, although he already wanted to put me on long term preds last October.

    My con is a resp specialist at the resp clinic at our The James cook university hospital in Middlesbrough.

    He's done all tests and takes his time discussing them.

    He made the diagnosis severe and brittle but a few gps have mentioned it before him already.

    Am I now labled this forever and just go through stable and unstable stages or can it actually go away ever again? I mean, I know kids can grow out of it during puberty...

    Thank you all for your input.

    Love Lydia xx

    Need another puberty time if that's the case lol.

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