Post consultant appointment blues

Hiya - this is a bit of a rant/need to get my head around it/aaargh post, sorry if its boring!!

Little bit of a background...

I am a brittle asthmatic, and have been going through a pretty rough patch recently. In less than 3 weeks I have had 3 serious hospital admissions; 2 of them have put me in Resus, one then needing treatment in ICU (over reaction in my opinion!!) and another a stint in critical care. My attacks fortunately are often resolved well with the use of IV Hydrocortisone, Magnesium Sulphate, back to back nebs and constant oxygen. My ABGs have been pretty low when they have been done - 8 or sometimes lower even after nebs and O2. Lots of other visits too, almost admissions and times where I have refused any other treatment than nebs.

Sooo ... I have seen my consultant today, the last couple of times I have thought him to be really good and helpful. Today I left feeling a bit upset and overwhelmed by the whole thing. He spoke to me about my most recent admissions and how serious they were. But then went on to say that as he only has my discharge letters and not my actual notes (my GP has them and is very concerned about the severity of my admissions), which are not very detailed.

He then spoke about how he thought that I do have ""underlying brittle asthma"" but then spoke about how he thinks that anxiety is also an issue. He then spent the majority of the appointment talking about how he thinks that it is not that I am not having an asthma attack, but that anxiety is making it worse?! And that IF he had copies of my ABGs then this would not be an issue - I go to a different A&E to where my consultant is based.

He is also referring me for Physio incase its a breathing pattern problem which is causing worsening asthma?

He wants me to also drop from 40 pred to 30 tomorrow - the last time I went to 35 I had a bad attack and a serious admission.

I then spoke about how my life would be so much better if I could have a neb at home, and if they gave me clear boundaries of how far I could push it before calling for help. After what he said about anxiety being an issue it confused me when he said he doesn't want to give young asthmatics like me a home neb as its dangerous and my attacks are already potentially life threatening?! This felt a bit contradictory?

It probably doesn't seem like a huge deal. But I left feeling really upset and not understood :-( My asthma is causing enough problems at the minute without my consultant going over to the dark side too...

Has anyone else experienced a good cons turned bad?

Laura x

11 Replies

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  • will reply properly in the morning hun, but just to validate your worries - there is no reason that if you were being more anxious than asthma that your co2 and o2 would be at the levels they are! if you didnt feel at all scared about the fact that sometimes you cannot get enough air then i'd be worried that you were not at all interested in self preservation! but actually you sound as though you are pretty calm and level headed about the whole situation, and cerainly not anxious enough to hospitalise you! its rubbish when they go on and on about anxiety, i think a lot of them use it to mean ""i dont really know what is going on or why"" and they shouldnt do that! id explain to your GP the issue you're having and see if GP can write and express your concerns. clearly your asthma is very uncontrolled at the moment and that needs addressing, and you cant do that if your cons is going down the anxiety route! BH, he's not seen you at the most acute point in your attacks has he?? so actually its going to be much harder for him to judge whats going on, but A&E staff treat you as though you are very ill, and i've seen plenty of people having panic attacks in A&E and staff recognise it immediately and deal with the anxiety (as opposed to their struggling to breathe through hyperventialtion) hope you feel better soon and that nurses appt is good!! xxx

  • Oh Laura you really do have my sympathy. I too am feeling very disappointed and let down by my consultant - or rather the in-patient consultant who is still looking after me until I am a bit more stable. After initially thinking he was wonderful ad the answer to my prayers, I almost had a full scale row with him on Monday! To keep it brief (I will post properly at some point) he seems to think frequent admissions, even involving ventilation, are preferable to long-term pred, is totally unwilling for me to self-manage in any way at all, and when I said I didn't want my whole life to revolve around hospitals he told me that suicide isn't illegal! I am absolutely furious and will be putting in a complaint, but I am lucky in that I am in London so will be able to see someone else fairly locally if the relationship with this hospital completely breaks down.

    I do hope you manage to get some sort of a plan, its awful being made to feel like youre not believed, and that you do not have control of your own life.

  • Laura: I'm sorry to hear about your diffiicult cons appointment. It is difficult enough dealing with the asthma itself as it is. One shouldn't have to be playing emotional self defense with a cons who perhaps thinks he knows your emotional life better than you do. I obviously don't know you in real life but at least from your posts you seem to be someone who does take the emotional into account and would be aware of an anxiety issue if it seemed relevant,

    Would it help if your GP faxed the notes or at least the Abg results to the cons?

  • Hi Laura,

    what a bummer!

    Only a very mentally unwell or very seriously oxygen-deprived person would not experience anxiety during a major asthma attack. ""Anxiety is a factor"" ... yeah, NSS! (No **** Sherlock!) Anxiety is a sensible, physiological response - what they actually mean is that your body is pumping you full of adrenaline in order to try to deal with a life-threatening situation.

    I have twice been wrongly diagnosed as having excessive anxiety during an attack. It was horrible - not least because I was in no position to argue! A few weeks later I found out that I have adrenal failure and am prone to very low potassium - together these cause really dramatic muscle shakes and erratic heart rate. The physical symptoms they were writing off as 'anxiety' were actually my body on the brink of collapse. Thanks Docs! Then of course I did get really anxious when I realised they weren't going to give me treatment because they thought I was just anxious!

    I strongly believe that only a psychologist or a psychologically-trained generalist - like a good GP - should be able to diagnose anxiety and put it on your medical notes. And then only in consultation with you. Your consultant shouldn't make that assumption unless he has spent time with you during an attack. My consultant has written an addition to my A&E notes to explain that anxiety was an incorrect diagnosis.

    What I would say is that while some Drs, particularly the bad ones we sometimes encounter in A&E, use 'anxiety' as a bucket diagnosis, your consultant might be meaning it in a specific physiological sense. It would be worth ringing the asthma nurse in the service perhaps, to talk more about it?

    The whole magnesium thing is interesting - it seems like some docs think it's useful, and others think it is having a placebo effect (and thus that your asthma has a greater psychological component). What occurs to me is that if you are being treated by a team who even know to consider magnesium then you are in the hands of experts and they are taking your attack seriously - so the chances are that their whole treatment of you will be both better medically and more reassuring. So whether 'the drug is the drug' or 'the doctor is the drug', it doesn't matter. You'll see lots of studies on Mg contradict each other, which suggests to me that it probably works for some people directly, and others simply because it's part of a good overall attack-management strategy, and others not at all.

    Don't worry too much about the breathing pattern stuff - the more I think about it, the more I think that physio makes sense for all people with difficult asthma. I have been running this last couple of weeks and have hurt my knee (in a way that I have many times before). Actually the knee injury (ITBS) is the result of wobbling leg due to a weak abductor muscle, which I have as a result of protecting a lower back injury from years ago - I tend to always use my left leg to push up or take any strain, so my right hip is a bit flimsy. My point is that any time a bit of your body gets weakened or out of balance there are consequences that emerge out of your body's sensible efforts to compensate or protect the weak bit. Some good - us asthmatics tend to have rock hard abs (even if hidden under a bit of cushioning). I suspect that nearly all asthmatics have some compensatory breathing habits which they aren't aware of. I have a tendency to hold my breath when concentrating or in a very quiet place, which I'm sure is because for so many years I coughed every time I exhaled.

    If the breathing physio picks up something then great - it doesn't mean anything about inflammation or bronchospasm or actual asthma-y stuff. I suspect it's just that our consultants already know all this and forget to pass it on to us.

    I wouldn't take this as ""good consultant turns bad"" - it's much more likely to be ""good consultant has bad day"". You've no idea whether he had a headache, a row with his wife (or husband), is worried about his unwell cat, is furious with one of his students or just woke up a bit rubbish. I have the best GP I've ever come across, but very occasionally we have a crappy appointment where I come away feeling misunderstood and frustrated, and interpret this as being that she doesn't like me anymore / is annoyed that I come in so often / insert-other-paranoid-ideation.

    The other thought I have is that perhaps he wanted to focus on the anxiety and breathing physio because that is probably the only part that you have any possibility of influencing for yourself. You aren't in a position to invent new drugs or treatments, and you are clearly now very reliant on other people, both long term and in acute emergencies, in ways that are uncomfortable - his intention was probably to hand some control back to you.

    Controlling your anxiety in an attack would be incredibly difficult, but maybe some quality talking therapy or hypno would help *any* of us to remain the right mix of vigilant but not-panicking in an attack? For those of us for whom really serious attacks are a rare occurrence it's probably less of a life-quality issue than for someone like you, where severe attacks look likely to happen frequently.

    Maybe this is something your GP can help with? Do they have a counsellor at the GP? Or a nurse who can do some basic listening / helping sort your thoughts out, on a regular basis? Not least because you need to be able to rant about consultant appointments like this one! I know the forum helps but it's no substitute for 30-50 minutes of someone's time in the real world.

    In addition - that would give your GP something that they *can* provide you with - which might be good for their morale, as well as yours?

    hth,

    Cx

  • Hiya everyone,

    Soph - cheers :-) I know you know I am not crazy .... it is a scary experience, but you know how hard I work to keep calm and make sure that anxiety plays as small a part as possible. I think the majority of us do this!!!

    Sparkle - that is horrendous!! I cant believe someone would say that!! You have been through enough without hearing that!! I would put in a complaint!! In one of my admissions when I was in resus, one of the doctors tried to say I was hyperventilating and having a panic attack ... he soon are his words when he saw what my ABGs were doing. It leaves you feeling pretty vulnerable, doesn't it? When your life is in their hands and you have no control - but to then have things like what was said to you shouldn't happen!! *hugs* I do have a pretty good action plan and a resp nurse who is always willing to listen and only on the other end of the phone, and will try and fit me in if I am struggling/have just been discharged!

    Beth - thanks :-) as I've said to Soph I work really hard in the build up to/during an attack to keep calm and my breathing as normal as possible, it is scary, but then when I get to the point of going in I know I am in the right place and hopefully will be ok ... never lost consciousness, so all must be ok lol!!! Seeing if GP will send ABGs to cons is a good idea. I might even contact the hospital I was admitted to as is different to where my cons is.

    Curiouser - thank you so much, you have really helped to put things into perspective! I just wish I had read your post before talking to my gp *sigh*

    Only a very mentally unwell or very seriously oxygen-deprived person would not experience anxiety during a major asthma attack. ""Anxiety is a factor"" ... yeah, NSS! (No **** Sherlock!) Anxiety is a sensible, physiological response - what they actually mean is that your body is pumping you full of adrenaline in order to try to deal with a life-threatening situation.

    I hadn't thought of it like this, although Soph has also said similar so many times before!! Didn't think about it in terms of adrenaline etc, which actually makes perfect sense. I do work hard at staying calm tho, cos I think if I allowed myself to panic I would become exhausted so much quicker!!

    I have twice been wrongly diagnosed as having excessive anxiety during an attack. It was horrible - not least because I was in no position to argue! A few weeks later I found out that I have adrenal failure and am prone to very low potassium - together these cause really dramatic muscle shakes and erratic heart rate. The physical symptoms they were writing off as 'anxiety' were actually my body on the brink of collapse. Thanks Docs! Then of course I did get really anxious when I realised they weren't going to give me treatment because they thought I was just anxious!

    That is terrible curiouser, I am sure that must have been a really scary experience!! BUT ABGs show the opposite in a major asthma attack to what they do in a panic/anxiety attack. There is no other reason in a healthy, young person to have a PO2 of 8 other than a severe asthma attack? Fortunately I show a lot of reversibility and am way above predicted with lung function, spiro and PFV. Fortunately I don't think I have any adrenal issues, but then it doesn't really matter atm as on maintenance pred - must be a nightmare though.

    I am also getting the same sort of thing as you got - ""becoming anxious because they weren't going to treat you because they thought you were just anxious"" - I already leave getting help until things are getting pretty dangerous and I know that I am at a point where there is no other option than to get extra treatment on top of nebs etc. This is just more likely to make me push it more through anxiety of not being taken seriously! I've had a lot of serious attacks recently and resus/ICU/CCU have been necessary - I really need to get over this ""anxiety issue"".

    Magnesium massively helps me during an attack - I have never had aminophylline, though on uniphylline anyway, so doubt that would be an option. Do you respond well to Mg? It seems to work well for some people and not at all for others? I would be interested in knowing whether there is any sort of genetic factor or anything ... Science Geek brain is engaged!!

    What you say about the phyio is helpful, I will access it when I get my referral and hope to get a positive out of it!! I know I overcompensate during an attack - I play woodwind and sing (or at least did when I had any breath control!). I get what you're saying about trying to hand back some control to me too!!

    Controlling your anxiety in an attack would be incredibly difficult, but maybe some quality talking therapy or hypno would help *any* of us to remain the right mix of vigilant but not-panicking in an attack? For those of us for whom really serious attacks are a rare occurrence it's probably less of a life-quality issue than for someone like you, where severe attacks look likely to happen frequently.

    Its only been this year I have started having such severe attacks and I have quickly learned how far I can push it until calling for help ... its just so much easier to try and control as much as you can for as long as you can before having to acknowledge that I need to get extra help ... I have never pushed it too far though and never would! Your attacks sound pretty scary though Curiouser, and I am sure they occur far more frequently than you would like!! Especially when you have the adrenal stuff on top!!

    I kinda dismissed my GP with the counselling thing before even thinking about it - paranoia makes me think that if I have any psychological help or anything anywhere on my medical notes, they will latch onto it in a&e and make life difficult. I know this is stupid because what I actually do during an attack couldn't be put down to anything else!!!

    Jeez this has turned into an epic post ... if you've got to the bottom you deserve a medal!!!

    Thanks again everyone!!

    Laura :-) xxx

  • No problem Laura - and yes, I got all the way to the bottom!

    My attacks were very scary from October to March, but I haven't had a scary one since March the 25th - and that one wasn't as bad as it would have been a few days before, as I was already on IV HC when it happened. Yay!

    I've not had Mg given to me - I'm extremely reversible so generally salbutamol nebs do the trick, and atrovent if the salbutamol isn't enough. My bad attacks tend to be very rapid onset - within seconds - and also rapidly get better if I get the right drugs in. When I've been admitted it has been because I can't get out of the middle of the yellow zone, and if I then have a total bronchospasm on top then it might not be possible for me to recover without adrenaline etc. But - touch wood - that level of worry is currently in the past...

    If you had counselling through your GP it would be in confidence - there is no reason why A&E would see that on your summary record. That said, if your GP specifically referred you for health-psychology work or counselling related to your asthma then it might be useful for A&E to know that you're doing everything you can - but that choice would be up to you. The stuff that needs to be on your summary for A&E is all about safety and relevant diagnostic info - like, do you still have your appendix, what drugs are you allergic to, when did you last have a tetanus, do you normally get admitted for this kind of thing? etc. There are safety decisions they make like not giving certain drugs to people who've ever had a kidney problem. The fact that you might find it helpful to talk through what is a very difficult time in your life is not relevant to making clinical decisions at all.

    I'd say you should go back to your GP for a chat about it - they will feel like you've taken their advice, and be glad you've changed your mind. The other option is that most teachers have access to employee counselling services, intended for exactly this kind of situation - which get contracted out to private psychotherapists and counsellors. Generally the waiting time is going to be less than for your GP but you'd need to check out the specific circumstances. Sometimes you only get telephone support, or only get six sessions per year - which probably wouldn't be enough. Your counsellor needs to 'live through' a couple of these crisis points with you. Also it might be an advantage to wait an bit longer and go to the GP-based service because you can ask for something called 'open confidentiality' where you give the counsellor and GP permission to discuss you with each other - if that was helpful to you.

    Do you go to your consultant appointments alone? Sometimes it's useful to take someone along who can keep taking in the information when we start to 'feel' stuff about what is being said. They might even pick up on the fact that your mood has suddenly shifted and then ask a question to help clarify what has been said that upset you. They can also hold a list of questions you intended to ask, and prompt you if you haven't covered them before the end of the appointment.

    I also think you said that there are asthma nurses attached to your consultant's department? Maybe you could ask if you could meet with one of them with all your ABGs and so on. They will have chatted to hundreds of people going through what you're going through, and can filter the impact of the consultant's clumsiness back to them in a tactical way. They might also be able to tell you that you're not the first of his patients to have this experience with him.

    Anyway - best of luck!

    Cx

  • Thanks again Curiouser :-) cant believe you got all the way to the bottom!!

    I will have a really good think over the weekend and probably book an appointment next week with my GP

    I shut down in my cons apt, I always go on my own, but I wished this time I hadn't. I had a load of questions, but couldn't bring myself to ask them ... silly I know

    I have a really lovely asthma nurse at my local hospital who I see pretty regularly, during/post attack or admission and in outpatients. She is also only at the other end of the phone. I am seeing her in a couple of weeks (if not before!!) and Soph is coming with me - THANK YOU Soph :-)

    The ABGs chat seems a good one, I dunno if it could be done, but it might be worth seeing actually what numbers I am on a day to day basis when well also - as then will have a concrete comparison for when they are done when ill. Its something which can be discussed, but maybe not that relevant. I hate ABGs.

    Its good that you seem to have a bit more control?! Or at least are not having huge attacks now. Is that the adrenal thing helping more?

    Cheers again!

    Laura x

  • Its good that you seem to have a bit more control?! Or at least are not having huge attacks now. Is that the adrenal thing helping more?

    I think yes, it's the cortisol stuff being fixed that has sorted my asthma out - without enough cortisol your immune system tends to attack your own body.

    Ironically I just had the worst little attack I've had in ages - though just a six-puffs one. Too much fruit and not enough Seretide I think. (I've started eating fruit again after being too allergic to it for ages, and I've cut back my Seretide to half the dose I was on). Can't complain though!

    That or it could be anxiety - after all, this tennis match is pretty exciting! ;)

    Cx

  • Sparkle - that is dreadful! I don't think any person should ever say that to another, and that only goes double and triple for doctors saying it to their patient! I really hope you can find someone with a better attitude.

    Laura - just wanted to say that apart from the details of severe/brittle and bad attacks etc, this all sounds SO much like me in cons appts! Especially that 'souring point' where you feel like something's gone off, you don't know how to retrieve it and start thinking what's the point, they think it's in my head anyway so don't get through your questions and come out feeling like it was a waste of time. I feel that somehow there is a way to rescue the appt from this point but I wish I knew what it was; once we're there I just kind of retreat and get defensive and make it all worse. I am very aware that it's not all the consultant making my appts less than I'd like but honestly, I have no idea how to improve this (though I have managed a good couple of appts with the cons I'm going back to, not sure what I did mind you!). So all this is helpful to me too - a friend who is medically qualified and in a position to know (has seen me do it as came to hospital with me) has said it really is interfering with the way I interact with medical people and might need someone to advise on how to get past this to get the best results. I of course was also adamant that I didn't want any of that on my records, but apparently it doesn't have to be (might have that wrong). A lot of what's been said here is v helpful to me too, even just to know that it's not just me who gets to this point! I kind of want to bring someone with me but am also reluctant. Completely behind the idea of 'decompressing' with someone like an asthma nurse- definitely a good plan to see her and take Soph. (I want this asthma nurse lol, don't have one and I tend to use the AUK nurses who are amazing but also of course don't know me).

    Slightly off topic, but Curiouser:

    if you are being treated by a team who even know to consider magnesium then you are in the hands of experts and they are taking your attack seriously - so the chances are that their whole treatment of you will be both better medically and more reassuring. So whether 'the drug is the drug' or 'the doctor is the drug', it doesn't matter. You'll see lots of studies on Mg contradict each other, which suggests to me that it probably works for some people directly, and others simply because it's part of a good overall attack management strategy, and others not at all.

    v interesting. Just because I was given IV magnesium for the first time when I was in hospital on Friday and it definitely was an improvement; I felt better while I was still in (less SOB going to bathroom etc) and better when I left, whereas the first time I was in I almost wished I'd taken them up on the offer of another night if I was still struggling, and the next day was a write-off as I was still so SOB (this time it was a write-off from lack of sleep but I was breathing a lot better). So interesting to see this re the attitude to Mg; I actually was not an obvious candidate for it as I wasn't having a severe attack and 'didn't tick the boxes' but I had a very lovely dr who really listened, acknowledged (without making me feel like a freak) that I was a bit unusual and said that while the attack on the face of it wasn't that bad I'd clearly not had any control the last few weeks and she wanted to see if she could improve on that instead of just doing the nebs and send away thing which she'd do if it were a 24-hour thing, and Mg was worth a try. Rambling here (sorry Laura!) but just wanted to say that re what you said as the drs I saw did seem very open-minded and willing to try things (sadly also this included my first ABG - not that bad though). WOuld be much more willing to get help for my less bad attacks (but where I can't think of what else I can do at home) if I knew they'd always be like that. (OOH lovely too).

    Anyway I am rambling hugely sorry, bit of a lack of sleep here! So not really sure if this makes any sense but wanted to put my tuppence-worth in because all of this is so very familiar.

  • I also got to the bottom :)

    Laurs re physio:: while I was in hospital at the start of may I had two periods extremely difficult breathing (PF<40%). they happened to be at the busiest time of the morning and the nurses didn't respond when I pushed the buzzer and I obviously wasn't exactly in a position to go looking for help. That was pretty scary.

    Having a lot of ways to keep myself calm and focused on breathing as calmly and slowly as possible helped me get through that awful experience. Fortunately for me the resolved on their own after 30-45 minutes and I was back up to 90% PB. So in my case it allowed me to ride things through until my lungs calmed down.

    In your case it sounds like the lungs simply wouldn't calm down on their own. I don't think physio is a substitute for medical care but it may give you some tools to get you through until help can come.

  • That sounds like such an improvement over before Curiouser - really glad to hear things have got better and you can even attempt fruit! :)

    Be careful with the tennis though ;)

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