Well after feeling breathless and tight chested for a few days i finally relented and phoned 111. I was directed to my out of hours and by the time i got there i was struggling to speak... Well suprise suprise i got told no wheeze im fine, but made me go to a n e because i was shaking! Tried to explain it was just the ventolin but made me go anyway. Well after a 2 hour wait i saw a nurse who was more worried about me having a blood clot or heart attack, never mind my peak flow was at 280 and i was struggling to breathe!
Took to resus and put on a drip, still no nebuliser, Finally saw a dr 3 and a half hours after arrival, who ordered a chest xray. He then asked if i had asthma! I was like well yeah, im pretty sure im having an attack now, again no wheeze no asthma and oxygen good. Didnt ask about any previous hospital admissions. My blood test results showed infection and low potassium. So was chucked some antibiotics and a potassium prescription and tufed out at 4 in the morning halfway through my drip, no nebs!
After a LOT of ventolin i can speak better but chest is still tight. This is why i avoid a n e like the plague, i have had good and bad experiences at a n e but am sick of playing russian roulette when i go, hense out of hours appointment.
I was suppose to have a respiritory nurse appointment 4 weeks after one of my hospital stays and consultant 2 months after. It has now been 3 months.. i have no number to follow this up with..
I have no idea what to do next time this happens, because quite frankly being on your own in hospital struggling to breathe for hours on your own is traumatising.
Sorry for the long ramble just wondering if anyone has been in a similar situation?
Mel x
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Melanie1989
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Hi Mel, sorry you are feeling so bad. Just a thought, if you ring the hospital they should be able to give you a number to ring. It could be a clerical error.
Huge sympathies - I can completely relate to this! Often A&E are good but sometimes they just lose the plot and don't get it. I have also had the weird alternative diagnosis thing especially the blood clot. I understand they have to rule that out but it seems so often they only think it because they think it can't be asthma because of no wheeze etc, and once they have decided you don't have it, you get chucked out as you did with no treatment. I waited hours once with no neb but oxygen because I had low blood oxygen, no wheeze and a fast HR. They eventually gave me nebs after doing the d-dimer test and finding it was negative, but if it is positive then they want to irradiate me with a major scan which makes me cross as it is not really good to have unnecessary scans just because they won't listen when I tell them I don't wheeze! The ventilation/perfusion scan is also quite hard to do when you are struggling to breathe and the contrast for another scan can set off asthma. They could at least try the nebs which seems less dangerous than a full on scan...but I guess are being defensive. Problem is, the d-dimer for clot and the troponin for heart problems can easily be raised in acute asthma too (I looked it up after one of these farces).
I have a summary that I have created which mostly seems to help, outlining how I usually present (ie no wheeze, maintain oxygen sats - though on several occasions my blood oxygen has been very definitely lower than the finger one), and the fact that my heart rate has been investigated and is a result of the asthma and not a heart condition or *just* a side effect of Ventolin. I also put my best peak flow, the fact that it is not an accurate measure as discussed with my asthma nurse, some back up showing that I do have asthma including my consultant name and some test results, my medications, my triggers, what treatment has worked before, and what happened leading up to this attack. I hand this over at the start or as soon as they start asking questions.
This often seems to work fairly well. I now have an 'official' version provided by my clinic which is fairly similar. I had a fairly horrible experience this weekend where I used my version and wished I had the official one! Not in the league of yours but i had a dr in A&E who is one of those who seems as though they are listening but really isn't. I did at least get treatment, reluctantly, but this dr kept saying I was fine and refused to listen to the fact that I literally could not make it to the door of the assessment bay - I was so breathless even getting off the bed was a struggle, but she ignored my best peak flow and the symptoms and still wanted to send me home. Luckily a more senior ED dr came in, watched me cough for about 5 mins then try to walk and said no you're not going, please have more nebs and hydrocortisone and stay in. The original dr decided that because I wasn't improving and nor was my peak flow with nebs, i didn't need them and was fine to go. Or, you know, maybe the attack wasn't under control?! I have seen this dr before in a similar situation and last time she completely ignored everything I said and said I just had the cough, ignoring that it was an asthma symptom. I told her I don't wheeze and she pretended to take that on board but clearly didn't.
This time after nebs, hydro which helped overnight, the on call resp consultant came in in the morning (who I found is very much not an asthma cons) said I was much better than yesterday from what he heard, then turned round and said well no wheeze, peak flow is fine (350, best 630 - yes I know it's high but I don't get up there that often lol and 350 isn't that great...) and sats are ok so this was never asthma at all, just dysfunctional breathing!
I did at least get treatment but am so incredibly angry and upset that he has written dysfunctional breathing and suggested I came in to hospital just for that. I am aware that it can be a side issue in asthma but I have seen about a million physios, done Buteyko, have worked on this and was discharged with the view that my breathing pattern was fine and not the main problem. I damn well know the difference between that and asthma and it doesn't make me have coughing fits where I am unable to speak, and make me too breathless to do anything but sit in bed and struggle to breathe. I would never, ever come to A&E with dysfunctional breathing and if I did, I wouldn't find it so hard to get there!
Very luckily I did get treatment somehow and got better - I do think the summary helped there actually even if they were mostly ignoring it, and I am going to update it to address this stupid dysfunctional breathing thing and emphasise it has been noticed and dealt with.
Sorry for the rant there especially as it sounds you have had a much worse night than me. I'm glad you're a bit better but sounds like not enough. Maybe give the asthma nurses at AUK a call and see what they advise? I suspect this isn't going to go away on its own but can totally understand your reluctance to go back.
Re the appt, that's very annoying. Do you have a general number for the chest clinic/can you find one online and ask to speak to the secretaries? If not, maybe the main hospital switchboard and ask for the chest clinic?
Hoping you get some treatment and sorry for the long ramble/rant about my experience... just that I really do get this and know how annoying it is and how rubbish it makes you feel.
Thanks for the reply, im sorry you have had awful experiences to, the unneccessary tests just adds to the stress of it all. Im sure it would be much easier to see if a nebuliser worked first!
Its ridiculous, there should be set guidelines that drs have to follow so everyone is on the same page.
I have spoke to AUK nurse who was really helpful and said when i see consultant to get a proper plan in place to show a n e. Though i know its dangerous, i really dont think i can bring myself to go back again. Luckily i took rescue pack of steroids before i went in and just continually took ventolin as i was left alone in resus and barely saw anyone!
I just spoke to an AUK nurse as well, very helpful and she said she had had 3 others apart from me say similar about not wanting to go in and being dismissed, guessing you were one lol! Also advised to have a plan, I did mention my summary and she thinks having a signed piece of paper may help.
There are guidelines for management of acute asthma but IMO they are really quite confusing and while the no wheeze thing drives me nuts I can actually see why drs think that! There often seems to be emphasis on 'an acute attack is xyz' - and yes those features are a bad attack but they are not clear that you don't have to tick every box and REALLY not clear that you don't have to have a wheeze!! The annoying dr I had said oh you're the first asthmatic I've met who doesn't wheeze. I thought no, I'm the first you've met who you can't say isn't asthmatic because they haven't got a wheeze!! The resp consultant didn't believe you could maintain sats in an attack either whereas the AUK nurse I just spoke to said some people just present that way. I'm less than convinced after my experiences that the finger monitor is something to be relied on in these situations...
I do know the feeling about not wanting to go back even if I should. It is very hit and miss. Did you get any advice on what else you could do currently?
Glad you got some good advice. The sats thing is annoying as i hold my sats well but my body works hard for it! My sats have only dropped once! I really wish they would treat the patient not the numbers on a screen!
AUK have told me to sort an action plan out and ask my gp about maybe adding montelukast.
Yep I am the same, do you find your heart rate goes right up but then they say it's salbutamol? I put that on my plan and emphasised that it is linked to asthma because if they think it isn't salbutamol the next step is often me glowing in the dark with scans.
Have also had arterial blood gases showing all the compensation happening to keep the sats up, and the oxygen pressure not always being that great either! I also feel like they forget at times that if you take an ABG while someone is mid-O2-driven neb, their oxygen may well be ok but what else is going on? (Had one who clicked and said your ABG is perfect, I don't believe it, they took it on oxygen right?)
Everytime my hr goes up! Normally stays around 150 and get told its because of ventolin lol. Although this time they thought it was heart problems so yep cue unnecessary tests! I mean someone struggling to breathe and is a known asthmatic but doesnt believe its asthma... its crazy!
I have had one abg where i retained co2 and one which showed hyperventilation but even then i was treated with iv treatments and nebs... Always have a high lactate which is weird.
Its quite worrying some drs would question why your o2 is ok on oxygen, luckily you got a sensible one!
It was like they just looked at the O2 on the ABG that time and nothing else including the context when it was taken! And then said well that is fine, oxygen ok so nothing wrong. This was also a doctor who watched me struggle to walk round the department, telling me to hurry up, then wrote on the discharge that I had no trouble walking and had anxiety. Also that I was only short of breath when a doctor saw me and not when observed from a distance, implying I was putting it on - but I was in a side room and it was not possible to observe me without me knowing a dr was there!
The hyperventilation bit is common in asthma too on the ABG - there is a point where the CO2 is lower and so is the oxygen and if they know their stuff they should definitely treat that, or even if just the CO2 is lower as the hyperventilation is part of the compensation - but I think some don't know that and all they see is oh hyperventilation not asthma, must be anxiety etc as they don't know how to read the ABG properly. I also have high lactate a lot - I think it is linked to salbutamol use but also to the asthma. Just had venous gas this time, showed high lactate, low oxygen pressure but then apparently a venous gas is not that reliable.
Your experience sound horrendous. I have, fortunately, not been in that position.
With regards to your lack of follow up after your hospital stay, do you have the name of the consultant in charge of your care? If so, I suggest that you 'phone the hospital concerned (switchboard numbers are listed on a hospital's website), ask to speak to the consultant's secretary and say you are concerned that you are still waiting to see a respiratory nurse and still haven't received a follow up appointment with the consultant. Tell her about recent problems and the need to contact the 111 service to emphasise your concern.
I have often had to chase things up for my own appointments and, although this is very frustrating, have always found a secretary to be very helpful.
In the meantime, perhaps seeing your GP would help as they will have had a letter from the consultant following your discharge from hospital and they may adjust medication.
Hi thanks for your reply. I have no names of anyone but may phone hospital switchboard and ask to speak to respiritory nurses. Im on the highest dose of inhalers but AUK nurse did suggest montelukast so might talk to my gp about it.
Hi Ladies after reading your post and learning of the experience you both been through I thought I try and help you get better treatment in A &E.
Last month I ended up in A &E due to having a cold which went to my chest and drop my peak flow to 60%. Two days after this I had an asthma attack (it was Sunday hence A&E).
When I got there the usual Sats, blood pressure etc. However this time was different. I been in two months before twice over three days. This time the doctor examined me (found a wheeze) usually I don't wheeze or oxygen level drop either. He treated me using a protocol which involved three flow charts for treatment. One for mild attack, one for medium and one for server. I was on the medium one ie. I could talk in sentences but my peak flow was crashing. So the treatment plan was set out for this which was Prednisolone straight away (40 mg) for me and 10 puffs of Ventolin (30 seconds apart) then wait 30 mins do peak flow repeated three times til my peak flow was 380. Then discharge with an asthma management plan of a reducing dose of salbutamol for 4 days after. Plus a review of inhaler technique and a reminder to get a doctor appointment on day 2.
End of flow charge was to be referred to a respiratory consultant. (code on form was ICE). This couldn't be done as I already referred and in the progress of getting sorted out better. Seen consultant at Respiratory hot clinic (a clinic to help keep people out of hospital) after two asthma attack with two days of each other (even though I was on prednisolone day 12/14 after one asthma attack) . The second doctor on the second asthma attack then suggested I needed more help than a GP could provide. I had to ask to be refer to clinic on the Monday after. I had blood test for allergies at the clinic (very allergic to House dust mite) and I on Monkelaust too ( been on it for over 18 months).
Due to have breathing test tomorrow and then results in 5 weeks. I had questions about this test and was able to find someone to talk to via one of the consultant secretaries. So it can be done.
So there is hope and there are consultant and doctors who will listen to you. I not saying my treatment has be perfect from my GPs in the past but I have manage to stay strong and brave. You know why because of the Nurses on the helpline. They have been amazing with all my many questions over the last 27 months when my asthma got bad from just Ventolin, first asthma attack Nov 15 to now. (My inhalers are Nexthaler 100/6 2 puffs twice a day. Flixotide 250 once twice and day and monkelaust.)
I hope this has help you have better trust in the NHS.
That is definitly reassuring to hear, and am glad you got the treatment you needed. Saw my gp earlier who is chasing up the consultant appointment so fingers crossed i get more answers.
Thanks for your reply, i forgot they have nebulisers. Although im always reluctant to ring an ambulance as im rubbish at judging how bad i am! Hoping my gp will chase up the appointment but if not pals is definitly an option.
Hi Mel. Souds like you had a bad experience in Hosp. Poor you.
I have had 2 really bad night about 2 hrs sleep each night due to wheezy chest and Hacking cough. The nurse at the surgery thinks it is asthma but my GP is not convinced. He thought last thurs he could hear a crakle in my chest so has put me on Clarithromycin 500 mgs to be taken twice a day for 2 weeks. Also now on a steroid inhaler Clenil 2 puffs twice a day to unblock my airways.
The GP is supposed to be phoning me today at some point.
Hi Melanie. My lovely GP eventually phoned me this evening. I told him my cough was no better and how little sleep i had had the last 2 nights so he is organising some blood tests and depending on the results of those he is possibly arranging for me to see a chest specialist whining 2 weeks which would be good as this cough and wheezy chest has gone on since 5 Dec.
How horrible for you. Like many others with asthma I don't have classic wheeze. I suggest that you contact your local hospital PALS - Patient Advice and Liaison Service they can help you to make a complaint so that it doesn't happen again - to you or someone else. It is important that we are vocal about giving feedback - good and bad - so that services can make good changes. Your hospital website will have their phone number and a volunteer can support you. They provide a confidential service.
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