Brittle asthma, Anaphylaxis and the royal Brompton

Hello all, I haven't posted on here in quite some time, I'd sort of given up on trying to get any advice about my asthma.

Over the eight week summer holiday period, I spent four weeks in hospital. After my last admission a couple of weeks ago I went home feeling tired, but my chest felt good, for over a week- it was the best week I'd had in months.

I started sixth form and my a levels on Monday, having to take two breathing treatments a day in the medical room. However, on Tuesday afternoon I was rushed to hospital in an ambulance from school.. Yay. I'd literally just finished my lunch, gone to a history lesson, someone sprayed something and within minutes I knew that was it. I'd end up in hospital, again. At hospital, at one point they even considered moving me by helicopter to the royal Brompton lung hospital as it was so bad.

So my second day of a levels and I ended up in hospital. Almost a week later, I'm still in hospital and still on oxygen.

On top of all that, I suffered two anaphylactic reactions over the summer and have now been diagnosed with anaphylaxis too.

My current meds are; symbicort 400, atrovent inhaler, tiotropium, loratadine, montelukast, nasonex, and ventolin nebules 5mg 4x a day, plus more when I'm bad. On top of that I've now got epi pens too.

When is this going to get better? I know it won't but it's just ruining my life. I don't go out anymore, Im scared to be alone, god knows how my a levels will turn out at this rate.

I've also been referred to the royal Brompton for sleep studies and a lot of intensive testing (not sure what though).

I can't bare it anymore, and I know I'm ranting away whilst all of us on here are in the same boat, but god is it hard to live like this.

34 Replies

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  • That seems strange they would move you by helicopter if you are in hospital already. And don't you live in London anyway?

  • Hiya, sorry to hear youre still having such a tough time. Are you in St Marys again? Im currently in Hammersmith and resisting a referral to Brompton - much as I know theyre the best, Ive just had enough of drs and hospitals, and I really like my cons so dont want to change unless its absolutely essential.

    I have epi pens too, you get used to carrying them and being alert to reactions, thankfully I havent needed them often.

    I dont have much advice, but Im thinking of you and hope they get you stable soon.

  • Id also say dont be afraid to ask for emotional support if you need it too, severe brittle asthma is really hard to deal with both physically and emotionally, and getting upset and stressed can lead to a vicious circle. Im getting to know the team here really well and its making a big difference to how Im coping. I do hope you can find the support you need too.

  • JF- I was in a local hospital this time that doesn't have an ICU or HDU; and it's right the other side of London, sort of on the outskirts.

    Sparkly- this time I ended up at Hillingdon hospital, which for once has been okay but they're nowhere near as good as St Mary's. I'm quite annoyed because St Mary's have a good chest team and I'm getting along well there, but now the Hillingdon asthma nurse wants to refer me to the Royal Brompton.

    Is your chest team at St Mary's or Hammersmith?

  • Hiya Annie,

    You shouldn't be being referred to somewhere else by an unfamiliar team, if you're under a team you get on with at st Mary's you shouldn't have to move. I have a friend who has been under both st Mary's and RBH and they went back to st Mary's.

    I chose to change hospitals and consultants because I didn't like my ok cons and the A&E at that hospital is more of a faff to get to!!

    Don't let them force you into a decision you don't want to make! If you're happy with the team at at Mary's stay there :-)

    OOI - I'm surprised that you're on both tiotropoum and ipatropium (spriva as atrovent) as I thought guidelines said they were a similar drug (the tiotropoum being longer acting). But then I know consultants can go against licensing etc! I used to be on symbicort smart, but on the 400/12 turbohaler and allowed to take 16 puffs a day including my 4 maintenance puffs! That definitely isn't licensed lol!

    I get what you're saying about it taking over your life! I don't have any advice, but can sympathise! It's taking over my life too!!

    Hugs, Laura x

  • Thanks Laura x Okay, I'll try and stress it to them that I'm happy at St Mary's and have only just felt happy with my consultants and asthma nurse, I don't want to change now.

    Apparently taking tiotropium and ipatropium can give some people bladder problems, but I haven't had any side effects so they're okay with it for the time being.

    In the meantime, my sats are currently 94 on 4L of oxygen.

    They're starting to worry about me being diabetic now too as my blood sugars are always low.. Great!

  • My team are at Hammersmith but A&E here is pretty hopeless so when necessary I prefer to go to St Marys. I had Dr Elkin there some weeks back who is absolutely lovely (and asthmatic herself which helps) and knows my team well so communication was good afterwards. Ive been told the resp nurse there is great too (Jill?) tho Ive never met her.

    I agree with Laurs, dont be pushed into another referal if you dont want it. I trust the team here, they know me and my asthma and that means an awful lot to me.

  • Theyre on about me maybe being diabetic too, but tbh Im too busy dealing with the asthma to worry about it at the moment! 10mths on pred has left me constantly starving and bigger than Ive ever been, but again, its just not my priority now. BTW, hows thw food at Hillingdon??? Im quite impressed with the Imp College food, tend to stick with the curries - yum!!

  • Sparkly- yes! Dr Elkin is my cons and Jill is the asthma nurse, they are both wonderful, caring people :)

    The food here is just as good as the imperial college food to be honest, but I really don't feel like eating at the moment. Normally I'm a human dustbin but it's taken me nearly a week to finish a bag of hula hoops and a bottle of coke- I normally consume a bottle of coke in about 10 minutes xD

    I've put on weight from pred too but mainly on my face, I used to be 10 stone 6 but now I'm 11, but half a stone isn't too bad so I'm not too bothered at the moment.

    I don't care about this diabetes thing either because 1) if I am diabetic it's clearly not severe as I've never had a hypo, and 2) it's just another thing to add to the list..

  • Sparkly, I take it you've been to the Manvers ward (st marys resp ward) then?

    I was there when Kate Middleton gave birth and was right opposite the Lindo wing ;D

  • If I were you Id def try to stay with your team then, they really are good. I *nearly* ended up in over birth of Prince George too but was determined to stay home rather than battle thru the crowds! We could have been ward mates!

  • I never realised you were at St Mary's so much- any time you're there and I'm there we should hang out on the ward xD

    If you see Dr Elkin or Jill mention my name, see what they say :P

  • Okay! Tho Im living in hope that after this long admission Im going to have discovered the Magic Wand, be really well and never have another admission again! Well, a girl can dream!!!

  • Ah, if only that was the case for us!

  • Jill is lovely, think she's just started and have spoken to her on the phone a few times, she was great.

    Not seen Dr Elkin though Jill was asking her for advice when I rang as usual cons was away. The St Mary's team actually referred me to RBH last year as they weren't sure what to do with me - not severe ut a bit difficult! Bt to be honest I wish I'd stuck with St Mary's as for me they have been better, which is why i went back. I would agree that if you are happy with them don't be pushed into a referral. I find St Mary's don't seem to hae long waits either.

  • Philomela- is your cons Dr Oldfield? He used to be mine but then Jill signed me to Dr Elkin instead- said she was nicer with young people, and I much prefer her. Jill is new, Monica (the old nurse) retired, she was nice too.

    Yeah, I think I'll basically push St Mary's to let me stay with them (:

  • Hmm, now you are tempting me to switch! No I have another one, just seen him and a reg, the first time. Hoping to get somewhere next time, we have a few disagreements on certain things like peak flow as a useful measure for me (it isn't really on a day to day basis). Have to say it would be nice to have someone who understood how crappy even non severe asthma can be, but I will persist. :)

  • So sorry you are captured again - what awful timing!

    Your screen name - an allusion to Annie Oakley? (19th century woman sharp-shooter - topic of musical ""Annie Get Your Gun""). Whether or not, from the little bit I've known you on line, sounds like you have her determination and gumption.

    Hope you are feeling better soon and can get through your A-levels in due time.

  • Hey Beth, actually my screen name is a pun on the Michael Jackson song- 'Smooth Criminal' (: people find it funny that I use the name 'Annie are you okay' on Instagram when most of my pictures are me in hospital xD

    And thank you, I just hope I have the strength to hurry up and get better for school ASAP!

    Thanks xx

  • Hello Annie,

    Gosh, you're having a rough time with admissions etc.

    At hospital, at one point they even considered moving me by helicopter to the royal Brompton lung hospital as it was so bad. What did they have to do for you in hospital that they thought about a Brompton transfer? Odd though, there is no helipad at Hillingdon or the Brompton hospitals.

    JF- I was in a local hospital this time that doesn't have an ICU or HDU; and it's right the other side of London, sort of on the outskirts.

    Sparkly- this time I ended up at Hillingdon hospital, which for once has been okay but they're nowhere near as good as St Mary's. I'm quite annoyed because St Mary's have a good chest team and I'm getting along well there, but now the Hillingdon asthma nurse wants to refer me to the Royal Brompton. Hillingdon hospital has a Intensive Care & High Dependency Unit?! As others have said, it may be better to stay with the team you know. Great to have good communication as well as any clinical care. The Brompton may be useful as a temporary visit for tests and consideration of diagnosis and treatment of all possible co-existing conditions - see below. You might find it useful to read the Asthma UK information on severe asthma.

    My current meds are; symbicort 400, atrovent inhaler, tiotropium, loratadine, montelukast, nasonex, and ventolin nebules 5mg 4x a day, plus more when I'm bad. On top of that I've now got epi pens too. Which Spiriva device do you have? They are rather different to others. Are you on prednisolone? There are several other options such as different nasal sprays, antihistamines, theophylline.

    I've also been referred to the royal Brompton for sleep studies and a lot of intensive testing (not sure what though). This sounds like it may be the difficult asthma protocol week. There are several previous forum posts on this.

    Hopefully, it settles down soon and the hospital works out the best treatment for you.

    TJ

    P.S. Hospital tip: I'd always ask for wi-fi passwords to save using up phone data allowances

  • Hi TJ (:

    Really? I don't know, they came and said to be that it was being considered to be moved to the Royal Brompton, the doctor didn't actually mention a helicopter to be but my boyfriend and I overheard them talking about helicopters and the royal Brompton, so I dunno?

    Before doing that I was given salbutamol and atrovent nebs, iv magnesium, hydrocortisone, salbutamol and adrenaline. Then they began to talk of inbubation and bipap therapy and that was when they started talking to me about being moved. Luckily I didn't have to in the end.

    You're kidding, Hillingdon has an ICU?! Well I haven't got a clue then.. This was the first time i ended up at Hillingdon so I wasn't really aware of much about the hospital.. Maybe it was because (they said this to me a couple of days later) that apparently Hillingdon doesn't treat brittle asthma or 'severe' lung diseases like cf and COPD, so perhaps that's why it was?

    I have the Spiriva handihaler and have been on prednisolone for about 4 months, unable to wean down under 20mg before ending up back in hospital.

    Oh and I have all-you-can-eat data. But thanks for the advice!!

  • You're kidding, Hillingdon has an ICU?! Well I haven't got a clue then.. This was the first time i ended up at Hillingdon so I wasn't really aware of much about the hospital.. Maybe it was because (they said this to me a couple of days later) that apparently Hillingdon doesn't treat brittle asthma or 'severe' lung diseases like cf and COPD, so perhaps that's why it was?

    ?? I though Hillingdon was your local - and that everytime you were ambulanced it was to hillingdon? Coz you were talking about it in the costa thread - i rember chucking at the peeling wallpaper comment and thinking 'bet thats why my local paint the walls - lasts longer'!!

    Another thing you said that confused me a bit - why are they worried about diabetes with low blood sugar?? maybe im being stupid - but i thought hypo's only occured in people who were diabetic and being treated (and that the hypo was a result of incorrect treatment rather than the diabetes itself??)

    its good that you were started back on atrovent - i remember you saying you'd been taken off it - did they immediately start you back on the two at once?? that does seem odd as they must do pretty similar things!?!

    Also, was wondering, have you considered trying to stick with one hospital? your care and treatment seem so inconsistent. things get stopped and started again all the time, i notice you've had nebs increased and stuff. i just cant imagine that anything gets a chance to work if things are being switched around so rapidly!! i get so frustrated about how slow things are for me - but tbh id prefer that as then i can decide properly if things do and do not work! and it helps with someone like you who gets a lot of chest infections and pneumonia - then i guess it must be hard to tell if you're bad because of the LRTI or bad because meds stopped!!

    what ward are you on? seems odd that they were gonna move you for ICU and then didnt even put you on ICU! lol! on my resp ward they have HCAs wandering around putting o2 back in as all the old ladies pull em out every thirty secs! hehehe! im good with o2 but awful with removing cannula in my sleep! i also occasionally am just messing with it in my sleep and have removed the bung a few times - thats bloody messy (pun intended!!) and so now have to get them to do the bung up tight and stick it down hehehe! spent a lot of time getting blood out of PJs before that!! :-)

    How are you doing now?? whats the plan for getting you out??

    soph!! x

  • How are you feeling today Annie? Any idea when youll escape?

  • Fingers crossed perhaps tomorrow, but this morning the nurse checked my sats on air (I'd pulled my nasal cannula out in my sleep) and they were 88, so I'm not sure really..

    How about you, how are you feeling today? How long have you been in and when do you reckon you'll be let out?

  • Not so great at mo, mid-attack and waiting for dr. Been in since Wed night and expecting to be here 3wks this time! Hope your sats improve (I tend to pull the oxygen off too!).

  • Woah. Good luck, seriously I can't imagine how fed up you'll be! I've never been in for 3 weeks but currently at a 'week in, week out' kind of pattern. I hope they manage to control this attack and get you stabilised!

  • Its already feeling a long stay, but hopefully will reduce the number in the future, so will be worth it if it does.

  • Well I wish you all the best of luck!

  • Soph:

    Sorry, sorry, I should've been more clear; that's the first time I've been TREATED at Hillingdon, normally it's a case of 'no wheeze, no asthma', having about four nebs then being told to basically 'eff off.' And no, this was the first time I've been ambulanced to Hillingdon, except for the time months ago where the paramedics tried to tell me I was hyperventilating (which put me off the idea of ambulances unless I was just about dying)

    And I don't know about the Diabetes thing as- until I googled it when they told me - I didn't really know exactly what it was, but apparently out of two types of diabetes, one of them normally associates 'mild' diabetes, with people who don't need everyday insulin etc.

    I was started back on the atrovent first for about a month, then they introduced Spiriva to me. They are the same type of drug and I've been told various times it's seen as going against the rules to have both of them, but I don't have any of the side effects that you can get, so now the doctors aren't too worried.

    And yes I have majorly tried to stick with one hospital- St Mary's- but it depends on how severe I am and how quickly, St Mary's would mean my dad has to come and fetch me which takes 20mins on the motorway with clear roads. I do try to go to St Mary's as much as possible.

    I spend the first night in some sort of Emergency Care unit, it had another name but it was something like that, then was moved to the respiratory ward which isn't bad but nevertheless the nurses aren't trained very well in respiratory conditions (one nurse the other night wore strong perfume that almost killed me.)

    As for the plan, I'm not sure, just waiting to see the doctors today, hopefully they'll send me home but I'm still on oxygen (giving me nosebleeds too) and regular nebs so probably not..

    Every night I have this one nurse who is pretty bad, I shouted at her yesterday because the woman next to me was in loads of pain and she wasn't bothered.

    Well every morning she checks my rather low sats (yesterday 88, today 90) and ALWAYS records it as 98 in my obs chart.. Is this because she doesn't want to go to the bother of calling a doctor?!

  • Are you home yet Annie? I do hope so xx

  • Sparkly-

    Not yet ;( they're holding me hostage, possibly another week..

  • P.s. how about you? You still at Hammersmith Hospital?

  • Sorry to hear you have been so poorly on this admission.

    On top of your severe asthma, to have now be diagnosed with anaphylaxis but be so very scary-do you know what set it off?

    My friends trigger is peanuts and I am nervous for her when we go out anywhere, in fact I think I'm worse than her!!

    How is it going? Have they sorted out your meds yet-Its no wonder you keep being admitted when your drugs are being changed all the time-your lungs don't know whether they are coming or going!!

    What meds do they have you on now?

    Hope you escape soon, take care x

  • Hiya fb (:

    At the moment, as far as I know, I have anaphylactic reactions to all types of nut and dairy products. But it could be other things too that I'm unaware of.

    And my current meds are: symbicort 400, salbutamol inhaler, tiotropium, atrovent inhaler (as a last resort), montelukast, prednisolone 40mg, loratadine, nasonex and salbutamol 5mg nebs 4x a day plus more when my chest is playing up. (And of course, epi-pens too.)

    Oh by the way, they've now given me certain types of chest physio exercises to do as well, it may help (:

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