Really uncontrolled ... feeling out of my depth and unsupported

Hiya, hope everyone is well.

This is a bit of and ""argh ..."" post! So sorry if anyone is frustrated by it!

I am currently going through a really rough patch asthma wise, I have a brittle diagnosis, but it recently seems to have taken brittleness to a whole new level. Since June I have had at least 12 serious hospital admissions ... at least 8 of them have resulted in admission to A&E and straight into resus and most admissions have resulted in some sort of stay on HDU ... If I am lucky I might get to go to Critical Care if I don't need constant monitoring.

Mostly my local hospital has been great, they know me well now and though in the beginning I felt dismissed at times, they now know that I always require treatment with at least hydro and mag, and sometimes during a bad attack, adrenaline etc plus extra mag (the most ever has been 3 doses over a period of a couple of days when an attack has proved difficult to resolve). OR this was until the last 2 ""admissions"".

During the last 2 (8 days apart and really pushing it in between ... one of the GPs at my surgery wanted to admit me during one visit) I have encountered the same dr in A&E, for some reason (despite my cons having something in A&E about me for when I turn up) has decided that I don't have asthma. I rolled up on Tuesday evening critically ill and struggling to talk in full sentences (I now don't leave going to A&E until I cant talk properly as I did for a while after coming scarily close to needing to be ventilated) to encounter this same Dr, who was unfortunately in charge of A&E, she decided I was having an anxiety attack, despite blood gasses not being good as my sats were fine ... 96% SpO2 on room air, very tachy and very high resp rate ... normal for me during a ""severe acute"". I asked for her not to treat, but got the same response from a dr who has given mag when I've been better than I was on entering A&E. Anyways, I was left for a while (after being given nebs!) and ignored and deteriorating very quickly, so discharged myself while I still could.

I then went to another hospital totally unable to talk, was treated with mag, hydro, adrenaline, b2b nebs and oxygen ... amino also ready, but fortunately wasn't necessary. I entered not able to talk at all (an AUK friend helping me to make sensible decisions, which wasn't going to end horribly!), was taken straight to resus where they treated very quickly. I then went on to spend about 12 on HDU. I then went to a normal resp ward and then was allowed out at an earlier point than I usually am on the condition that I use QDS+PRN nebs for at least 3-4 days, up the pred and start a trial of azithromycin when I get to 20mg of steroids.

SO ... I booked a GP appointment today, as needed to sort out meds and a script for the antibiotic etc. I couldn't see any of the people I like to see (because they GET me!) so had to see one I haven't seen eye to eye with in the past. She said in the appointment that my sats are always fine and don't look like life threatening attacks despite a resp cons saying ""life threatening attack"" ... surely a resp cons wouldn't confuse anxiety and a life threatening attack? I know that anxiety attacks change your ABG numbers (I thought this was the opposite during an asthma attack, and that pO2 wouldn't drop to 6 anyway!!) and that she thinks that I am basically well controlled and am hospital hopping?! I only went to a different hospital to where my cons is as I wasn't being treated and was having a life threatening attack!!! She also isn't willing to prescribe the antibiotic, as its not a treatment that has been started by my normal consultant!!

Sorry for ranting, but its just really upset me. Really struggling with how uncontrolled my asthma is at the moment. I don't have anxiety issues (thank goodness) ... but won't deny that not being able to breathe is flippin' scary!!!I don't know what to do now. I was hoping that I might get some degree of control with the antibiotic, but how can I if the GP wont prescribe. Is this even allowed/justified??

Argh ... sorry for the rant/ cross post .... really feeling overwhelmed and want my life back and not have asthma screwing everything up!!! :'-(

Laura x

17 Replies

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  • Oh Laurs, hun! stupid GP!!! She clearly cannot make a proper judgement on your health when she has not seen you whilst acutely unwell. A&E docs are not all idiots, and they do not treat panic attacks with IV mag, hydro, etc. Unless i have missed something - is that what they do if the paper bag fails!?!?! sigh! Your blood gases WILL do different things during an anxiety attack compared to asthma attack. my thinking is that an anxiety attack (and a milder asthma attack) will have low co2 and normal o2, and the more severe the asthma attack the lower o2 will go, and the higher the co2, and anxiety attacks wont do that! (am i right in my thinking of this - anyone know any different - im interested in how it all works! I had a weird convo with a resp reg, who said that as my o2 AND co2 were high whilst having nebs that this was more severe than normal o2 and high co2, something about not getting air in OR out efficiently - but that doesnt make sense to me - i thought when my o2 was high it was just coz they had me on too much o2 and nothing to do with the state of my lungs, esp as my o2 tends to be low when not on any o2 at all!)

    I have to say, i can see that having lots of different cons inputting does affect how consistent your care is, but its an antibiotic that has been reccomended for me (by a different cons to usual) and it seems from the costa thread that a lot of us are on it, so clearly he's not reccomending something unusual or radical. the cons who wanted me on it wanted me to try a few things first, and then the antibiotic, he wrote to my GP to advise them, i cant see why they would disagree with a resp cons, who will obvs know more about it than a GP!!! if he doesnt think you are anxious, then surely that is something a GP should just accept!?!

    And dont worry about ranting - you are going through a rough time - no reasonable person could deny how ill you can get - i know all too well how bad you can get - and how frustratingly relaxed about it you can be! hehehe! Id suggest you go see a different GP, when you can get in with a decent one, if they are funny with you im sure you can get hold of the hosp cons and ask if he's written to GP! good luck hun!

    xx

  • Oh Laura that sounds awful. I know how rubbish it makes me feel when I get the not asthma card because my SATs are fine and can't imagine how bad it must be when you are acutely unwell. I am glad you got better treatment at the other hospital.

    I presume you are getting an appointment with your usual GP to discuss meds. Did they have anything from the hospital about it or are they still waiting? I was surprised how long it took for the note to come through after my (allergy based) admission and I couldn't get the change in med from my GP until it did. However, after my latest admission (at a different hospital as I was away from home) they had the note the next day.

    Take care

  • Heya,

    It said on my discharge letter that a trial was to be started!! I am going to see one of the other GPs or the advanced nurse that I usually see ... I just feel as thought they will say that they cant go over the head of another GP?!

    She said that she felt as though she was justified in saying this as it wasn't said by my usual cons and that she was going to contact him before issuing a prescription.

    I am not anxious about the asthma or the attacks I have, I just want to have a decent quality of life!!! Most of the A&E treatment I have had has been great, but when you're acutely unwell and they don't believe you are, its pretty scary!!!

    I don't get how the asthma has got so bad recently :-(

    Laura x

  • Laura I totally understand. My post hasnt come up on the costa thread yet but I self-discharged this evening in a far worse state than I went in because I simply wasnt getting appropriate (or really any!) treatment. As my asthma is spasmodic more than restrictive, in a 'real' attack I need either b2b nebs or iv salb far earlier than most. Today I was treated like a panicing hypocondriac & Im now feeling upset & less keen than ever to go in early next time! If I ever find a foolproof answer Ill let you know!

  • Hey Laurs,

    Sounds like you're still having a terrible time. And you were completely justified in going to another hospital ... That is not hospital hopping.

    And yes, as soph says you will not retain co2 if you are having a panic attack ... There needs to be some form of lung pathology. And sats don't tell the whole picture!

    Azithromycin is a relatively common medication in difficult asthatics and there are currently a few trials going on regarding its benefit as it has both antimicrobial (as its am antibiotic) and anti inflammatory properties. Main contra indication would be heart arrhythmia s/block as its can cause prolonged qtc (sorry doctors stuff)

    Sometimes I've had people question how poorly I am as I am usually pretty calm, don't look like I'm struggling too much but luckily my numbers tell a different story. And sometimes my anger/frustration is interpreted as attention seeking but as you say a life in a&e and hospital is no fun!! I have to say that I'm lucky and most of the time I have to try to stop drs panicking with me as I can often tick all the boxes for scary asthma!

    I hope you start to feel better soon and I apologise for any typos and ramblings as I have just escaped for a&e myself!

    B x

  • Argghh how horrible! Last thing you need on top of all that is the GP being like that. From what I've heard though from a medic friend a GP is still an independent practitioner so afaik they don't have to agree with the cons or always do what they say (and that's worked well for me in the past when cons have decreed I didn't need medication which I did need) but in practice mostly will for various reasons. However tht does mean that if your usual GP thinks you need to have the antib and cons has said you need it they will probs prescribe it, though will not outright say they disagree with their colleague. (There are ways of saying things though - I've had both my usual GPs disagree with a cons, in this case because I think they felt the cons had not seen the whole picture, and one of them was more vocal though not rude, but you could really tell the other one thought cons was crazy but being very tactful about another dr in front of a pt (which I do understand)). Anyway bit of a ramble and the other way round from you but just thought I'd share and say it seems from what I know that your usual GP would be ale to give it.

    Really don't think it's GP's place though to issue statements about your asthma without evidence, when she doesn't really know you that well and the cons has said it is asthma! In my experience sadly even cons apparently can think asthma is anxiety (which it definitely isn't for me and you defo know is not for you;; I knew that myself, though as you probs know it's easy to self doubt, and now cons has confirmed in addition to GPs knowing that) but I find it very hard to believe a cons could think an anxiety attack is asthma!

  • Big hugs Laurs, you're going through such a rough time, I really feel for you. The last thing you need is unhelpful docs. Can you see a preferred GP soon to sort meds out? Also can you see your cons about the unhelpful dr in A&E who's not been following your treatment protocol, or maybe make a complaint about them?

  • Your posts have real resonance with me Laura...I am struggling to find a balance with asthma and my life at the moment I am as I have previously said a brittle asthmatic who has the added complication of multiple allergies including being allergic to some common drugs given during an acute attack. I have a written protocol, resp cons did it for me last year, however depending on docs working in A and E some are fab, some choose to ignore it, some choose to think about it and then use it when it is almost too late...I have only had 4 admissions this year all since June with the onset of the warmer humid weather, all 4 of those have been ITU or resp HDU and one involved being ventilated for a short time. At least one I feel could have been avoided with prompt treatment and less of the wait and see.

    My consultant changed recently to a proactive one...he wrote the treatment plan, and my GP is fab but this weekend I experienced a real problem in A and E I went in for an unrelated issue, or I thought it was...fab treatment from nurses, junior doctor was not particularly helpful he decided that my problem which was AF was caused by my asthma, after four hours he then decided to refer me to medics by then it was past midnight and said I would be admitted. I had no asthma symptoms, the AF had been reversed and I was fine just a little fed up. He failed to tell me he was referring to medics, he only told me after I had canula removed and was ready for home, he had previously had refused to read my treatment plan wanting to make up his own mind...he was an F2 my plan is written by resp cons..., and 10 minutes before telling me I was waiting for the medics he had said I could go home...I got a little ""distressed"" I am almost hospital phobic after years of admissions , and to tell me I can go home and then promptly telling me I can't without even giving me time to adjust is not a good idea...had he bothered to read my notes he would have seen that...so it seems to me that A and E treatment is a lottery, sometimes it is great and others you are on a hiding to nothing. I have decided to complain this time, I have done this in the past and the outcome has always been good, it has led me to have the opportunity to inform people what it is like on the patient side of the bed. All I wanted really to say that you are not alone in this situation, not helpful I know, but sometimes to know that it is not just you it does feel better and more motivated to let people know how it was for you.

  • Hiya,

    Thank you to everyone for being SO supportive!!! The GP really upset me the other day! My consultant has a plan written in A&E for when I turn up saying what I need and why. Its just annoying that the person there last week chooses to ignore what my cons has said about this - and its happened more than once!! As Soph says, I am very relaxed about when my asthma gets to a dangerous level, the thing that causes me anxiety is how I will be received in A&E ... surely it shouldn't be this way?

    I also don't understand how my GP can go over the head of a resp cons? I am going to see another GP this week sometime to see whether they will prescribe, especially as they think that it is something immunological that is kicking my asthma off at the min!! Although realistically I will probably end up in hospital again over the next few days, and will possibly have the opportunity to talk to my own consultant at this point. Though hoping to have a break from A&E for a bit! I cant keep up this level of uncontrol :-(

    That said I have had a pretty good day today ... I am putting it down to the dry heat and low pollen count!! For a good day I mean 2x5mg nebs and about 30 puffs of salbutamol ... not good by most standards, but for me this is awesome and the best day in months!!! I am on QDS 2.5mg salbutamol nebs at the min anyway!! so I am only *really* counting the 30 puffs of salbutamol ;-)

    Hope everyone else is ok!!

    Laura xxx

  • Hi,

    I hope your feeling better. It's scary reading your post as I've encountered so many doctors who behave the same. I'm not as severe as you but my asthma is really impacting my life so I can only imagine how difficult it is for you.

    My asthma flared up 18 months ago and since then I've been battling with doctors to help me. I've had the whole ""I don't think you've actually got asthma"" ""just lose weight"" ""your asthma is well controlled as I don't here anything while your sat here in my office"". It's infuriating as after these occasions I've ended up off work for up to 5 weeks with severe breathlessness. On all occasions if the doctors had listened to me these situations could have been avoided.

    I'm totally of the opinion that some doctors have tick boxes with asthma sufferers and if you don't tick their ""typical symptoms boxes"" they don't believe you. It's sad that they think we don't know our bodies. After all why would we waste our time in hospital and doctors surgeries if there wasn't something wrong?!

    I think that there's still a really long way to go for asthma sufferers getting the right treatment and when I read your post and heard that someone struggling as you are isn't getting the right care it made me really sad. It's scary as I also don't feel comfortable going to A&E now as I don't wheeze, I leave it beyond what I should as I don't want another doctor giving me the anxiety lecture. It's dangerous not to feel supported like this, what if you would have gone home that day?

    I really hope some doctors read these posts. All we need is a bit of faith that we know our own bodies. If another doctor tells me they think I'm just stressed I think I'm going to lose it, yes I am, wouldn't anyone be with a 20% sickness record?? ALL of it caused by asthma? Wouldn't any normal person feel anxious that they have no control over their asthma which is ruling their life?!

    Keep going, there is one thing they can't ignore and that's persistence. You know your lungs better than anyone don't be afraid to remind them of that.

    X

  • Hi,

    Just an update - on both the asthma and the gp front.

    Asthma - back in hospital :-( need to get control ASAP as this in outing is driving me insane. I also don't know why but this attack doesn't seem to want to resolve fantastically. 2xmg, hydro, antibiotics, b2b nebs, the works in resus the other night. Nebs throughout the day yesterday to have a sudden severe attack at midnight last night - dr called cos of rubbish sats and given more IV stuff :-( rubbish!

    Apparently on top of asthma being uncontrolled (big time!!) I am on antibiotics for an resp infection - wonder if that's why it's not resolving?! Yuck!! I want to escape!

    GP - I went to see the nurse at my surgery the other day where I cried alot and said what the gp had said. The gp has written to my cons to say about the antibiotic, but she has also suggested in the letter that I am hospital hopping? As I had to go to a different ont last week due to lack of treatment. She also said that a few months ago i went to a different one for the same reason ... That is true, but I was stopping with a friend miles away, why would i go to my own local when there is one closer?!! Feeling very frustrated with her.

    Also the Antibiotic, I get why there is reluctance to have people on them long term etc, but I don't get why she won't prescribe tbh. She says that there is no evidence of infection, yet my chest X-ray and bloods showed a stinking infection - silly gp!!

    This time in hospital they have been really good. There was a nurse who said I was having a panic attack, but the a&e consultant said my ABGs were awful ... So gonna trust her lol. Hoping to escape soon, but the attack needs to fully resolve - there are noises of aminophylline again ... Not amino bad!!

    Sorry for what's turned into a bit of a rant :-/ xxx

  • Not much fun being back in but hope your still getting the right treatment. I have been through all of this and still do although most of the nurses now me in A & E and they don't change as much as the doctors so are more help at getting treatment to me quickly. I'm friends with Sophie so amusing your in a local hospital to us, if your still in this week I can come visit once I'm back from Norfolk and we can have a good moan about how bad they are!!

    Sorry I can't be more help feel free to email me Sophie can give you it.

    All the best and hope the antibiotics are working Amanda X

  • Laura your hospital consuktant shoukd be able to prescribe prophylactic antibiotics - bu unless you are proven to get regular and frequent infections, it wont be deemed clinically appropriate - particularly due to risks of antibiotic tolerance, which has been a big problem for me. I dont have a memory of all your other admissions being infection related so thats probably why constant antibiotics are not felt to be appropriate. Sounds like the hospital are doing the right thing by treating your current infection though :)

    I was getting LRTI's more than monthly but for most asthmatics this isnt the case.

  • Hoping to see my cons within the next couple of weeks as awaiting an urgent apt through. I get a lot of chest infections, which also trigger asthma - I'd say about half of them are infection induced at the moment. But I think my immune system is pretty useless at the min!

    Got quite frustrated this evening as I had a get together with some really really old friends - 2 of them have been my best friends for 20 years! Asthma was a banned discussion until they noticed how much I was struggling (good at hiding usually!) and then they started worrying! It got onto the whole thing of asthma and admissions etc. They were obviously upset as worried, which upset me and I cried on my best friend. I then got ""but you weren't that bad at school"" - back when upto 10 puffs of vento was a *bad* attack and it'd be when I was ill on top of cross country or something!!

    I NEED some control - this is driving me insane! But my lungs are really hurting at the min, so feeling a bit sorry for myself :-(

  • Oh Laura I do sympathise, I keep crying at the moment after the other days appointment and feel so overwhelmed by the whole thing. I wish I had an answer, Id definitely share it, but I do know that coming on here and sharing with others in similar situations is a lifeline for me. Hang on in there xxx

  • Aww Laurs I can sympathise, I'm still stuck in costa and this is my 5th admission in the past 4 weeks :( been told I am on everything now and my cons is really trying but AnE quite often ignore my plan and send me home when still quite unwell.

    I have had soo much time off work that I am under disciplinary action (bit harsh when they know I have been admitted every time) I'm a nurse in the NHS so I kind of hoped they would be a bit more empathetic!

    I spent my day in tears yesterday over the lack of control and just feeling really overwhelmed with the situation.

    I hope u r feeling a bit better about things today though love

    BeccaXx

  • Hi Laurs

    I'm really sorry to hear you're having such a hard time. Whilst I'm not nearly as bad as you are, I (along with many others here) know what it is like to deal with idiot A&E docs or GPs who won't listen.

    I'm dealing with a GP at the moment who thinks that my chest will clear up on its own (it's been getting worse). He gave me antibiotics but no pred, and refuses to until I get a lot worse. What makes the situation even more ridiculous is that the same thing happened last year. I ended up in A&E, with at least one medic asking me if I had been ""feeling stressed"" lately. They kept telling me I was fine because my sats were ok. It wasn't until my blood gases came back that they rushed me into resus and suddenly took things very seriously. By then, my sats were dropping rapidly as well and I ended up in ICU.

    Now I'm trying to bang heads together to remind the same people that this is going to happen again if they ignore it like they did last time!

    And Becca, I'm so sorry that you're getting grief at work. They really should know better. I hope they come to their senses in the end.

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