Hi all, after what was a good 12 weeks for me with no admissions - the longest i had stayed at home since October was 2 weeks, everything feels like it’s going backwards! I have had 2 admissions in the last 4 weeks, one was requiring ITU for 2 nights, I was discharged on Wednesday this week, and again this morning I’m tight and wheezy. I was told during my most recent admission that they don’t think it’s always asthma, as I maintain my saturation’s (well they’re borderline 94%) and I don’t have a wheeze! I’ve had rising Co2 on gasses, occasionally desaturate and my peak flow post neb has always improved. I’m on benralizumab injections - I’ve had 4 now and have definitely seen an improvement, fostair 200/6 and salbutamol when needed. I feel like I’ve been branded a fake - they have written a care plan with my respiratory consultant outlining what treatment I should and shouldn’t get which I haven’t seen yet. What makes me feel worse is that I’m a nurse at the hospital I am treated in and yet I’m told this isn’t asthma etc etc and I’m made to feel like I’m putting it on!
Just a little rant!: Hi all, after what... - Asthma Community ...
Just a little rant!
Oh no! Please don't feel like that! Did they suggest anything else it could be? I don’t really have anything helpful to say other than don’t feel like you’re a fake because you know your own body!!! And someone doesn’t end up in ITU for no good reason!!!! Big hug& ask them questions!!!!
Have they looked at Vocal chord dysfunction? I had numerous admissions with a wheeze in my throat/upper airways, not in my lower but my peak flow was 200 and was always better after a neb. I am a retainer so although my o2 levels were not too bad around 90 my co2 levels were high. A lot of asthmatics have vocal chords dysfunction as it usually goes hand in hand with asthma. A lot of the time a good bit physio of physio can sort it and it really does help with the asthma. I had numerous admissions last year and only 1 this year as I have been doing the physio. It is definitely worth asking about as it has worked for me. I am on zolair and a LOT of other meds and 3 inhalers for asthma. Although I am still on all my meds, my hospital admissions have been rock bottom this year due to the physio. Hope it helps and it defo worth asking about. 😁
Good morning
Now that you are home and can reflect... is it one particular person who makes you feel like this ?
Could you have a quiet conversation with them when you are calm and in control to find out why they made you feel like this ?
If you have a good relationship with your specialist nurse or consultant... tell them how you were made to feel and they can speak to the staff concerned. This should be done before you run into another problem... when you are poorly it is impossible to have this type of balanced conversation... do it today !
Good luck
It is SO frustrating hard and scary to have to act as your own advocate while you're miserable, gasping for breath, and struggling to function. I'm so sorry this has been so hard on you.
You know your body and what's going on. You may have to calmly but persistently explain that to health workers many more times than should be necessary but stay strong and look out for yourself. You know better than anyone else how you feel!
Take good care, keep us posted.
I'm wondering if you phoned your consultant to talk about your recent experiences in A&E etc and explain the staff there are pushing back on recognition of your asthma and therefore treatment is being delayed. I would also ask for a copy of your treatment plan so that you can take a copy with you on any emergency attendance.
Take care.
A&E are great with me, it’s when I get onto the ward and am under the respiratory team. The one doctor who mentioned that she didn’t think it was all asthma, is the doctor who used to work with my respiratory consultant. I have written my own plan and they A&E team usually follow it with no issues. The doctor who has mentioned that they are writing a plan is the same one who worked with my consultant so knows him well and always talks to him when I’m admitted. I have got an appointment with my consultant on Friday morning, although its a telephone appointment the care plan will be discussed.
Sorry for the confusion, though this makes it all the worse as it's a respiratory doctor.
I would have no qualms in explaining in your phone consultation that you feel distressed to be told "it's not all asthma" when you're suffering from an asthma attack. And that it affects your ability to recover and maybe outpatients is a better environment in which to discuss theories.
Asthma attacks are extremely frightening and making the patient distressed is the last thing any doctor should do. Now I'm having a rant!
It's so difficult to advocate for oneself when ill. It's hard enough in outpatients if you get someone who wants to go off piste and won't listen, let alone when you're lying in a hospital bed.
I hope you get this resolved in your phone consultation, get to the bottom of of the "it isn't asthma" theory and get a copy of the treatment plan. Good luck!
Hi HoppyNurse, I suggest making a complaint to your consultant about this Dr. This attitude is not appropriate. It is annoying that unless its classic asthma some Dr's seem to dismiss it.
There are plenty of examples (see EmmaF91 as an example who will tell you about silent chest and her experiences with some Drs) where people have asthma but don't have a wheeze.
My oxygen sats are ALWAYS fine when I am sitting or standing but drop below 90% when lying down (but then I have to where CPAP machine at night).
Peak flow improving after inhaler/nebuliser is clear sign it is asthma because its reversibility. It would more likely be COPD or other lung disease if it did not improve after inhaler/nebuliser.
Painful. I thought they knew of "silent asthma". You can't win with people who won't listen. It's like they have blinkers and headphones on. Hopefully whatever the plan is, that it works for you.
Ugh this all sounds awful - bad enough to have the admissions without being doubted! As a non-wheezing non-sats dropper I can really sympathise here; currently having the usual doubts after a non-ideal clinic letter, as it does get into your head I find and I start believing them, even when I have other evidence that yes it is, and asthma doesn't have to be classic. But as others have said - you don't go to ITU for no reason!
I would definitely want to be seeing that plan and asking to discuss it, and pretty sure you have every right to do so - rather than just being presented with it and given no chance to discuss, especially if you know what helps and they're basing it on a misunderstanding of asthma in general and you specifically.
Is the hospital where you're admitted also where your specialist clinic is/where you get the benra? Do you have a good relationship with the consultant you usually see? If they have contacted them and they know you better, hopefully the consultant will have explained things to them, but I know that can be tricky. If it's a different hospital for the specialist clinic, it might be worth getting in touch with them and explaining the situation.
I don't know if you already do this, but it may be worth doing your own 'summary' of how you present and what helps, and if you can discussing that with your asthma team - perhaps alongside whatever they have been given as this 'plan'. If they are willing to amend the plan, or 'approve' yours that may help.
I have my own but it's only semi-official; I was given an 'asthma passport' but showed the asthma nurse my version and she agreed it was pretty similar. However, sometimes they think it's official and sometimes not - last time A&E made a big deal out of the fact I had done it myself which they don't usually (normally thye just really find it helpful and say so), and I was nervous about that, but still got treatment. I will say the summary usually helps a lot better with A&E than with the medics, who tend to be very much 'we are right' types - it sounds like you have similar this time unfortunately (and even being respiratory doesn't necessarily help, as I have often found them the most rigid about what 'real' asthma actually is!)
I'm not sure if this is helpful at all but at least you know you're not alone! I really hope you find someone who actually listens and can make headway before next time you have to go in.
What are they saying to you that would make you think they are thinking you are faking? ( I too am a health professional, and have a fear of going to the hospital I work at with any of my problems.) Like today. The humidity and heat is through the roof (so bad out there today), and it is REALLY bothering me. Having trouble getting a handle on things for over a month now. I would go to urgent care, but no. I work there...no way. Just wondering what they are doing and saying to make you feel like that? (I totally get where you are coming from).
Thank you all for your replies, I have had a telephone consultation to with my consultant, he said to me that I only went to ITU because of how I looked not based on my blood tests! The dr at my local used to work with my consultant and is always in contact with him when I’m in. My consultant told me to go to his hospital not my local - an hours drive away or 45 mins train/walk! That it never going to happen because I go downhill far to quickly and always end up in resus! So he’s decided that he now needs to see my in person to carry out some tests, so I’ve got an appointment for 2 weeks time. The worse thing is he won’t even write my OH report which was requested in beginning of March until he has seen me so more time off work with no pay!
Hmm, that sounds really unhelpful. Your local does seem to have some problems with how they handle things at times but as you say, it doesn't really seem practical or safe to go that far if you tend to go downhill quickly - and how are you meant to get there? Driving yourself and getting public transport seem unsafe or impossible, so only options are expensive taxi or someone being around to drive you - again, doesn't sound the safest.
If your cons's mate is at the local and reports back you'd think that would be enough for him - though if this cons is the one who's saying it isn't asthma on the basis of no wheeze and not dropping sats enough, when you have rising CO2...not sure he or she is going to be that helpful. (Sorry, this isn't helpful when you can't do much about it, but I do sympathise about this kind of set-up where it feels like they don't believe you and start criticising things/second-guessing when they weren't there and didn't see you at your worst.)
Sounds like he's one of those who sees you in clinic when not too bad and then can't grasp that this isn't reflective of how you are when acute. I also have this problem even when admitted - they see me after nebs sitting in bed, or right at the end of an admission, so yes I look ok right now, doesn't mean I was when I came in or that I can walk to the bathroom without struggling!
On the ITU thing...ok I've never been to ITU and those who have can chime in, but 'it wasn't on the basis of bloods but how you looked'? I'm pretty sure there are all sorts of reasons to admit someone to ITU or HDU (it's seemed that way when outreach have come to see me) and it's not going to be just on bloods or on just one factor! If you're unstable and have rubbish obs and high or rising CO2 then I'm pretty sure that would factor in - but I really cannot imagine any hospital using an ITU bed for 2 nights without good reason, and they shouldn't just be going off sats and wheeze.
The OH report - while I get he wants to do the tests, does he grasp that you've been waiting this long for the report, without pay etc? To be fair to him it sounds from other posts like your OH doesn't have the nicest attitude about this and of course there's been COVID, so it's not necessarily his fault, but still frustrating.
I know absolutely nothing about this area but wonder if Poobah might be able to help re OH, as she seems to have some experience with workplace sickness policies? (I hope you don't mind the direct tag Poobah but didn't know if you would see this, and I know you've advised on workplace rights elsewhere on the forum).
Absolutely- they always see me when I’ve had a neb, so always get the comment chest is clear, and they don’t seem to take into account other doctors notes, and what they have heard, when I was pretty rough - it was a weekend admission so under a medic bit respiratory, the consultant listened to me pre neb and commented that I was tight especially on expiration! So you would have thought that would be enough. He has seen me with a high FeNo in clinic when I’ve felt rubbish so you would have thought he would get it, even then I wasn’t wheezing but was tight! When they’ve measured my FeNo in the local, so time 3-4 days after admission and on pred my FeNo was still above normal so what does that tell you! It’s just frustrating it’s like the right hand telling the left hand certain things and not the whole story!
My OH are not great! I had to fight to get paid for shielding and not off sick because the OH doctor said I was shielding so wouldn’t comment on my fitness to return to work! I have to get the RCN involved to support me.
I always have to wonder about the note-keeping to be honest - given how discharge summaries make it look like I ran in, had a neb then lounged around in bed for a bit, I sometimes wonder exactly what gets communicated. Even the best of doctors have variable skills in this I suspect, and then the doctor receiving the information has to receive it without being selective and cherry-picking, and actually have an understanding of what's going on (ie not be hung up on the presence/absence of certain signs). Ample opportunities for information to get lost, which is very frustrating.
And yes, the timing is also unfortunate - my consultant writes things in his letters (his letters never reflect what he says, I don't think writing is his strong point) about how I didn't have any evidence of obstruction during acute admissions. You did spirometry ONCE, just before I went home, when I was full of drugs!! And they never seem to record if they see you post nebs. Sorry, now I'm ranting.
The no wheeze thing is also infuriating. It never goes away.
Really hope you can start to get all this sorted out and seeing the consultant is more productive than the phone call. And get OH sorted too.
Reading this has made me feel so upset- I’m so sorry you’ve been made to feel this way. I’ve read a lot of stories similar to this on here before but I’m honestly shocked that the arrogance of a medical team stretched as far as to make a fellow professional question their health.
There is so much work that needs to be done across the NHS with regards to correcting myths about asthma, particularly surrounding SAT’s and wheeze.
I really do hope that you’re feeling a little better now and hope that you do not have an experience like that again x
I just thought I’d update you all, following my post I was admitted again, but didn’t see the doctor who had previously questioned weather it was asthma or not. I have since seen my consultant and he again questioned weather it was all asthma, however my FeNo is currently 77, proving that there’s ongoing inflammation in my lungs (this makes me feel better that there’s evidence proving my asthma is out of control). My consultant still doesn’t want to add any other medications but wants a 24hr PH study before he sees me, and no care plan was discussed.
It could be that you have 2 drivers! I’m on benra, but that hasn’t stopped me getting high fenos during/after attacks (I’m also allergy driven). Equally not everyone gets controlled on the MABs...
I’m glad you’re feeling happier that they have to at least acknowledge that there are physical issues going on still!
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