does anyone here experience asthma attacks with normal oxygen but high co2 and the attacks are severe with different symptoms and bronchospasm. My daughter has uncontrolled asthma with regular exacerbations also she needs inhaler throughout the day everyday and if she doesn’t take it when she’s wheezy/tight she then goes on to drop oxygen. We are struggling with quality of life and not getting enough help because her oxygen doesn’t drop straightaway it takes time and she had two major attacks where the oxygen dropped but regular exacerbations where SATs don’t drop quickly. Any advice would be helpful. Thanks in advance.
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asthma attack without dropping oxygen
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My_fairy
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Homely2Administrator
I have uncontrolled severe asthma, and only drop oxygen levels under either very severe attacks or a series of rolling attacks. Then I go down to the 94 to 95 level, with the odd departure lower. My brain goes at these levels which is frightening.
My gp does not normally regard my more moderate attacks as asthma attacks as my oxygen level is maintained, he calls them chest infections.
Generally though I have not found the oxygen level a major issue as I generally avoid the gp doctors.
I go to the gp asthma nurse or the hospital asthma nurse. They get asthma and it's oddities and can access the asthma consultant when needed.
If I have to have an ambulance I show them the latest letter from the consultant.
So my approach would be to do your best to find a medic who understands asytma, probably some form of asthma nurse, and then do your best to get and keep access to that medic.
I lost access to my gp asthma nurse for a while, but the hospital rang my gp surgery for me and sorted it. I also asked the asthma consultant very specifically for a hospital asthma nurse.
For help manoeuvring around the NHS ring the asthma UK helpline and talk to a nurse there. They can tell you what to ask for.
I do this. If I get tight, I breathe more to compensate so don’t drop my oxygen.
Medics shouldn’t look at o2 levels alone. They should look at:
. How your breathing, just looking can give them an indication of how much your struggling
. Breaths per minute. If your breathing at double the normal rate then it’s not a good sign
. Oxygen levels. Logic says it’s completely wrong to rely just on these. Surely that just ends up with attacks going untreated at the early stages.
It’s so frustrating to be told that “your oxygens fine and I can’t hear a wheeze, your ok”, when your far from it!
IMO this shouldn’t happen, it’s really not rocket science.
Don’t get me going on eczema either. With so many people living with these issues we shouldn’t have to go looking for someone who understands it
that’s what I mean they give her inhalers after listening when she’s struggling to breathe/ with tight or wheezy chest in the hospital but consultant said to me he hasn’t seen anyone in his 30+ experience an attack without oxygen dropping because we have been through a lot of trouble after they misdiagnosed her life threatening attack with dysfunctional breathing just because she hadn’t dropped oxygen and she had silent chest instead of owing to their mistake that the attack was left untreated and got worse became life threatening where she was about to be intubated and last minute pulled off … when I ask them they just give me answers that contradict .. we are having hard time with her quality of life being affected .. one biologic has failed after working for 5 months and very limited options left .. her asthma is way too complex
can I just ask have you been on biologic treatment to control your asthma or any specialist care. My daughter has daily symptoms and I am looking for any advice from someone who is in the same boat as your description is similar to her situation. She is under paediatric who haven’t seen such bad asthma in children but it’s quite common in adults . Thanks
I am under the care of an a lung consultant at my local general hospital.
I am not particularly happy with this, as previously I spent four months under the care of a proper specialist asthma department. I got there by being sent to a and e there when on holiday. The care there was better than my present care and they made progress at settling my asthma. They then decided to send me for consideration for biologics, unfortunately this involved asked my general hospital for my old medical records. The general hospital then insisted that I had to be sent back to them, as I was their patient.
So I am now slowly being assessed by the general hospital, so they can consider referring me to a specialist hospital.
The frustration at being caught in their kafkaesque bureaucracy at consultant level is extreme.
However on the positive side I have a good gp asthma nurse and a good hospital asthma nurse.
They help me to adjust my asthma care to try to get a measure of control. To do this you have to keep experimenting under medic supervision, as asthma is a very personal thing which is also dangerous.
So I now use fostair 200 with salamol when my asthma is out of control, fostair 100 mart in periods of control. I use spiriva and I have just been given a giant old fashioned spacer, which I prefer to my smaller spacer.
I have had control now for two weeks, which is lovely, minor attacks, but nothing major. Soon I will switch to fostair 100 mart which I prefer.
My advice is very much to campaign to get a grass roots nurse who will help you find the best day to day care. This for me involves experimentation under their supervision. So challenge everything, inhaler technique, type of inhaler, type of spacer. Each change can take two months to bed in and prove it works.
Check the home environment for triggers, switching to more house cleaning, air purifier, washing bed clothes at 60c, worked for me.
Then on the longterm side manoeuvre to get to a decent consultant who will help you find out if biologics are a good idea, or refer you to a suitable specialist.
In all of this talk a lot to an asthma UK helpline nurse who can advise you on what is sensible to try.
Getting control of severe uncontrolled asthma, without the constant use if pred, is complicated.
It is made worse by the fact that I do not wheeze and my oxygen levels only fall when I am in a very bad state.
Iv been hospitalised twice since April with asthma and both times my oxygen hasn’t dropped. Everyone is different and like others have said they need to stop looking at oxygen levels as a main factor
yes all her life she has been treated by her condition and looking at other factors and in extreme conditions she can’t even walk/talk but Sats only drop when it’s too acute attack which will be the case if left untreated
It is the same for me despite what my 02 and pulse levels currently are doing (mentioned in my first comment to you minutes ago) it is usual for my sats/levels to only drop very low and stay low when acute, but my pulse bpm rockets, whilst everything else is dropped and staying so. So for me I know if my pulse goes over 130 when I'm completely still and upright, and my 02 oxygen level stays dropped, doesn't climb even after inhaler usage, then I need to get to hospital. My peakflow readings in general are up and down all the time. So I tend not to be fussed by those unless they drop below 120. I was intubated some years ago, massive asthma attack, went majors and minors day before massive asthma attack happened and was treated disgustingly and disgracefully by the male triage nurse who saw me, he was vile and put my life at risk, laughing at me, making crazy signs about me at his temples to nurses outside the cubical and laughing to them about me as he rolled his eyes too, thinking I couldn't see him doing that, he had told me nothing wrong with me, it was all in my head and to stop wasting his time as he had more seriously ill patients to deal with in cardiac arrest and to not come back to the hospital again. I had been ordered there by a call back from a nurse after I had called 111 prior to the call back, she made me promise to go to hospital as she could hear how incredibly bad my chest and brreathing was. I was reluctant to go, but after her pleading with me to go, I did, they were expecting me she told me, so no need worry about being sat in a&e possibly for hours. And that was that the treatment from him I received upon him seeing me. Thing was, he never listened to my chest, I had on a big thick bat winged jumper, the jumper was billowy and billowed out off my body, he just held his stethoscope on my jumper that wasn't touching my body at all, tell me couldn't hear anything, there was nothing wrong with me, that it was it was all in my head blah blah blah, his attitude changed because I happened to mention I had depression. And next day less than 24 hours later I was dying on my hallway floor. And had he actually bothered to listen to my chest he would have heard how critically ill I was, and he would have heard that I was one of those cardiac patients as I was later told after my coma that 3 days into it, they discovered I had biventricular heart failure. My heart was dolng over 200bpm, I wasn't expected to survive anyway prior to them making that shock discovery they weren't expecting to see on just a chest scan to see how an unknown infection/virus was clearing up. I had been so incredibly poorly alone at homr, and the cardiologist after my coma told me my body had been shutting down slowly, and that I would at home have gone to sleep and never woken up again. My heart had stopped also for seconds, maybe a minute, shocked into stopping by my hyper inflated lung, but thankfully it rebooted itself when I eventually exhaled. Effectively the massive asthma attack saved my life, but had that male triage nurse done his job properly the day before I'd have been admitted to hospital and wired up to a heart monitor just due to my asthma anyway, and I'd never have ended up having to be intubated and placed into an induced coma to try and save my life. Those additional hours of not being admitted and effectively treated killed me briefly, and were expected to take my life in the coma too. He was still working there a few years ago, and always covered his name badge when he saw me. I did lodge a complaint about him once on a ward. They do not always take patients as seriously as they truly should do, but that male triage nurses behaviour was vile, disgusting and disgraceful and his negligence almost cost me my life. I no longer trust most people in medical professions in hospital settings because of him and a few very nasty vile condescending others in those settings I've met along the way. Do own homework and don't allow them to dismiss/fob off/ignore/belittle/mock/tell a load of bs because they can't be bothered to investigate patients health issues properly. Must stand own ground with them.
I am so shocked to read your story. These type of professionals only work for money whereas health professionals job is very important and they have no room for mistake as in your and my daughters case it led to a life threatening situation. She kept saying she’s tight chest but as it was silent they did nothing and made her suffer more to the point she was ready to be intubated. They also laughed at us thinking we were just putting up a show.
I am so sorry to read your experience and feel like you have a big heart that you didn’t take this nurse further but as we are trying to raise concerns we feel like it’s very hard to fight with the system and especially they work as network to support each other in everything even wrong. Wish you best of luck xx
They are disgraceful and actually quite nasty, evil, vindictive and power hungry. Covering eachothers wrong doing backs, allowing wrongs to take place before their eyes towards patients, the patients family and friends without standing up and saying no that's not right, that's wrong don't do this, that, the other! They turn a blind eye, they speak to and treat the elderly and infirm disgustingly, neglect is rampant, abuse is rampant, them shouting and swearing at patients and using bullying tactics is rampant. They undo the good of those whom are good in the medical profession. Their own egos are inflated and unfortunately I have been victim of and witness to, more bad, neglect, verbal, physical abuse in hospital medical settings than good. The whole patient and relative/friends medical system is disgraceful, sloppy, lax and negligent in need of a massive shake up on that and of actually listening and taking patients seriously. Them being abusive, neglectful, lzughing and pulling faces and not listening to patients and their relatives/friendd should be immediate sanction and retraining or instant dismisal as those types within the medical field/profession bring it down to it's knees to its lowest form. That won't happen because there are not enough doctors/nurses/specialists, so they get away with disgraceful, abusive, neglectful behaviours, treating patients as if they are a joke and nothing but dirt. Far to many are in it not necessarily for the money, but for the abuse and neglect they know they can get away with, and are backed up if found out and questioned in such a way, they end up looking golden. The NHS does not need most of this disgraceful poorly trained sloppy bad attitude british/chinese/korean/ philippine low level nurses/triage whom do not know how to respectfully behave towards patients because they just hire them in from anywhere regardless of them not being medically trained enough to know what they are doing. No elderly patients should be left screaming for help because they are being handled abusively, roughly and without any care, respect or dignity, the mocked because they soiled themselves because they weren't answered after repeatedly buzzing their buzzer or screamed at to just effing wait! Then told they stink, are bad, have done it on purpose. No patients should be told it is all in their head, told they are lying, tokd they are crazy, told they are attention seeking, told they don't know what they are talking about, told they are not cold/to hot when they say they are, no patients should be left hanging out of their beds, no patients should be told to shut up/eff off etc, no patients should be mocked for not being able to walk or being able to help themselves, wash themselves, feed themselves, left hungry, left thirsty, left in pain, left vomiting, left bleeding, left struggling to breathe, left unattended in corridors for hours, left wet, left soiled, stripped off disrespectfully with disregard in front of other patients, told thry are not in pain when they are, left without a blanket, left without a pillow, left shivering, left afraid and so much more. All of that I have witnessed and some of that I have been victim of, but certainly do not put up with it, and do speak up and out for those whom cannot speak for themselves. Dementia and very frail patients should not be put on normal wards, they require constant and specialist/specialised care and treatment and it should not be left to other patients whom are unwell to try and care and tend to them, doing the jobs that the nurses and doctors should be doing, but can't be bothered doing as to busy ignoring patients and standing around in groups gossiping about everything that thry should not be talking about for patients to hear that they can tzlk and gossip about away from patients when at home or outside of hospital/medical settings as it is highly unprofessional and sloppy behaviour. I'm sorry you have been through difficult times/go through difficult times trying to get your daughter the correct treatment. Wish I could offer profound advice, but unfortunately I cannot, otherthan do not allow them to disrespect you or your daughter, report if necessary, don't allow them to fob you off or talk down to you. And speak up loud so others hear what is going on, shout back if shouted at as they shouldn't be doing that, and stand your ground. Praise those good medical professionals, make them feel valued. x x
I can understand and sympathise with the way you have explained how they treat patients … they have stopped her review because unable to manage her asthma and not giving true picture on papers or even mention of her being uncontrolled rather blamed on deconditioning and want us to obey them in a life threatening situation through Child in plan with a fake referral to children services and hence making who family suffer.
As you said they back each other and once they are informed about concerns they are just made to get away rather than held accountable. It’s too much diplomacy and bureaucracy at consultant level I feel ward and junior doctors do their job but it’s the consultants who take pride in their power and use it against the patients. I am glad you speak up. My daughter is uncontrolled and we are made to suffer more with no help just so that they can prove themselves right with no help of school arrangements etc.
I don’t know how many patients and families they would have destroyed by looking at their systematic way of working not for patients benefit rather disgustingly saving each others back.
You only know the extent of filth theee once you get to experience.
I wish everyone who is sick gets well soon and lives a Doctor free life which for sure was best life for my daughter.
Homely2Administrator
Talk to the asthma UK helpline
Hello My_fairy, sorry to hear this. My asthma flares present like this. My GP and respiratory specialist go by how tight my chest is, the way I’m breathing (more in than out) and whether I can talk in full sentences. If I have a chest infection the levels drop but often again it is not straight away. My asthma presents in an unusual way but it is still asthma. I get the frustration and anxiety around this and feel for your daughter. Importantly keep seeking out people who get it, so that your daughter can get the help she needs to bring her asthma under control. Thinking of you all 💜
yes her asthma flares are like this aswell as you mention and she’s on highest possible medications still it’s been uncontrolled for such a long time in 2 years only 4-5 months biologic helped and it’s a daily struggle for her with symbicort up to 12 puffs she’s allowed daily after that we get reviewed … doctors now understand how brittle her asthma is but we aren’t getting the right support as her medical history is messed up … thanks for sharing your experience it’s really helpful sometime to speak to someone who is in the same boat and all the best wishes for you too
So sorry to hear how your daughter is struggling. I hope she gets the help she needs soon. Just to add to the others, I'm similar in that oxygen only drops when I've been struggling for ages or in a severe attack. My peak flow is the same. It may dip a little (eg 50) but once inflammation takes hold it can be weeks to get back under control. My lungs are very twitchy, they're seem to be either good or not. Unfortunately, doctors don't always see the not so good part.
yeah it’s the same with her she starts feeling it before and obviously if she doesn’t take the inhaler it gets worse and takes time for oxygen to drop…. However her peak flows does drop quickly … and they give good indication… best wishes for you asthma is definitely different for everyone and symptoms I am glad people people are sharing their experiences as it helps to relate and gain knowledge
LysistrataAdministratorCommunity Ambassador
I think this is much more common than is acknowledged - as you're probably seeing from the answers. Unfortunately it seems to be way too common for asthma to be misunderstood in the way that you're describing. I can have severe asthma attacks without dropping sats and with peak flow not at best but not too bad. The arterial blood gas sometimes tells a different story from the finger monitors for me - but again that relies on the medical team being able to interpret them properly. They need to, but don't always, not just look at the oxygen, to note if the sample was taken while receiving a neb driven by oxygen, and to look in context - normal to high CO2 should be a lot more concerning in someone having an asthma attack, and there are other factors showing whether someone is compensating.
You may find this thread helpful - not because you're using a home sats monitor when you shouldn't, but because of what the ALUK nurses (and doctor who was consulted) are saying about oxygen sats, and some of the replies: healthunlocked.com/asthmauk...
My mental answer to that 'not seen an attack without sats dropping in 30+ years' consultant is 'well maybe you weren't ever paying attention'. Personally I also find the respiratory consultants aren't usually there for severe attacks in A&E, and don't see the worst of it - and notes, as you've noticed, are often unhelpful and/or inaccurate. I used to have a lot of problems with A&E notes being on a separate system, so everything that said 'on admission' was on admission to the ward and didn't look too bad. That was what the consultants saw so they were forever telling me I didn't really need my admissions as they never saw the worst of it (and I am not necessarily that great even going to the ward, just better than coming in and they catch me at a good moment when resting).
Your poor daughter - and you, having to fight the system! I can relate as I've had similar experiences, but it would be even worse at her age. I totally understand why you were asking about specialist centres for children with severe asthma, as her current team really don't seem to understand severe asthma well. I think a lot of general respiratory teams don't necessarily (and even specialist ones can have rigid ideas, but there are also some good ones out there).
I may have mentioned it before but the person I know under Birmingham Children's for severe complex asthma is still getting on well with them (she is actually over 18 now but for complex reasons including how her asthma presents has still been under paeds services.) She was with GOSH but it wasn't working out. I should say also that she has a LOT of inaccurate rubbish on her record from hospitals misunderstanding her attacks, and from a really obstructive and ignorant local consultant who Birmingham are aware of but disagree with. Hope that helps and you find somewhere better for your daughter soon.
Thank you so much, your reply helped me feel understood. I am so sorry you’ve had a similar experience. She has many bronchospasms that squeeze her chest shut. She loved and laughed at your mental reply and thought that must be so true. Our problem is we are with RBHT a very well known and well thought of clinic but the mistakes they’ve made have caused them to hide her real diagnosis. They’ve so far done a brilliant job of avoiding help with school and disregarding our quality of life. It is unhelpful that my daughter is young and a fighter. She looks well enough at first sight however as her mother I can assess her wheeze and tightness depending on her complexion. She goes very pale when wheezy and hates me touching her during attacks. Our local hospital consultant was exactly the same with obstruction and rudeness. She once asked my daughter to “bring on the wheeze”, now I don’t understand if she genuinely believes that my daughter is a typical teenager. Since clearly she has a longer record of severe asthma attacks every 1-3 years long before her teenage years.
Many people ask me why they don’t just own up however after multiple complains they have just made more problems continuously.
Thank you once again for your absolutely beautiful reply.
Ahh I'm glad it helped! And very glad I made her laugh! It really is a terrible position to be in with them actively making it worse, and also making patients feel as if they're crazy. This shouldn't make a difference in this day and age, but I don't think it helps being a teenage girl or even woman - it can feel like the assumption is that we're just anxious or exaggerating, especially for teenagers. And female doctors are not necessarily any better there - I had one who treated me like a wayward teenager looking for attention, aged 28! I can't imagine an actual teenager getting on any better with her. The one your daughter has sounds awful! There is no need to treat patients like that at any age.
I was briefly under RBHT adult services as was a friend, and neither of us got on that well with them. They have this reputation that everyone thinks they are amazing - and they can be, I also know people who've done well with them. But I think you have to be exactly right for them and if not then they're not so great. I was a terrible fit for them! They just sound especially appalling though here - even a small local should know better and they are absolutely not a small local!
I hope this doesn't come across wrong, but I think it's great that your daughter has you in her corner really understanding the issues, even though you can't treat her or stop the doctors being how they are. It really does make a huge difference I find, to have at least one person who understands that doctors aren't necessarily right and that something is wrong and it's not all in your head.
thanks completely agree with everything you said … heartiest best wishes and I can completely see where you coming from about RBHT but I really thought it’s only the paeds resp now that you told me I am susceptible to keep it when she will be adult … thanks
I was asked to bring on the wheeze, when I couldn't as wasn't in a flare up, I was told I was making it up, that I didn't have asthma because if I did I would be able to wheeze, I'd never at that point been a wheezy asthmatic daily, just a coughing very breathless one whose chest didn't really get tight either. So because I couldn't wheeze on demand it was all in my head, and she told me she was stopping my inhalers because as I wasn't asthmatic I didn't need them, and she told me I had underlying issues relating to trauma from being in my coma. She was nuts, horrible and incredibly wrong. During my coma I was in absolute heavenly peace being pumped full of the purrst love ever that isn't found in humanity on earth. And I have no trauma from being intubated or from the coma, or from being in ICU. This doctor was then trying to say well you must be traumatised from not having been able to breathe when you were at home before you went to hospital. Well no, because I'm a rational person able to calm myself down to not panic when I was, I talked myself out of panic to stay calm and rationalise that if I could scream down the phone to 999 ambulance call handler that I couldn't breathe get ambulance to me fast as I was going to die, that infact I could breathe, it was extremely poor breathing, but I logically and calmly rationalise with myself in that call and reprimanded myself as of course I could breathe if I could scream, so stop with it, and pipe down to not bring on panic. I even managed to laugh. I even held up at linked elbows by paramedics walked to the ambulance, and received some treatment, then got out of ambulance myself to go and get my bag, and lock my front door, and then got back into the ambulance myself. I don't recall the drive to hospital, vaguely remember arriving, then nothing, then being in a cubicle in a&e bring monitored and treated as they tried to stop my asthma attack, nothing was working, I became life threateningly critically ill and was told exactly what was going to happen to me. So no trauma, I was glad, it was the ultimate relief and my coma time was heavenly not scary. So this doctor then tried again to twist things and said because I was saying I was scared or afraid, and yes panicked but managed to calm myself and rationalise, she then tried claiming I must have hidden trauma and must have been having a panic attack not a massive asthma attack. I told her she was nuts and that she infact had underlying issues. Shr actually stopped my inhalers, the consultant and my gp were shocked and immediately restarted them as soon as they were made aware by me. My gp was furious, unable to comprehend that doctors actions and why she was so intent on trying to twist my words and label me traumatised when everyone knows I am not at all, but am incredibly angry about those whom failed me, and rightly so. That nutty doctor also wrote a load of lies in my medical notes done in front of me. She was being voice recorded secretly as when I received the letter for the appointment with her, and saw her name, I remembered we had met before when I was either still in ICU or on a ward and she hadn't been quite right in her head then, and very rude towards me making things up back then, telling me my coma was my own fault and me being expected to die in my coma was my own fault. So no way was I going to that appointment without her every wlrd recorded. So I got her for messing and lying in medical notes and made it clear if she wasn't made to change what she wrote I had absolute proof of her liees and would take it further. Her lies were removed from my medical notes in front of me another time by someone else. She had written it all in pencil to change it as she pleased. It was all removed. Don't let them mess you and your daughter about in any way. They do lie and do try to deny things and cover things up.
aww I am glad you shared your story this sis exactly what we are experiencing they write misleading things in letter and forced her for psychologist and try to blame her asthma on other issues which is their own fault for not making the right decisions and ignoring my daughters case.
I can so relate how you are presenting yourself and although my daughter is 13 she’s very brave and believe me she stays calm and composed EVENTHOUGH her asthma affects her oxygen level in the brain which makes her black out. I personally feel people who put up a drama and make a big fuss may be dealt better but she has been fighting with this disease since younger so she says it’s almost part of her which doctors can’t understand.
I am glad you got them to change the notes can you please tell me we have few recordings too because of what they have done to us but at the moment we don’t know what to do. They have referred us to social services and trying to get her on child in need if we don’t agree then child protection so basically we can’t have a say in our daughters treatment which is against any ethics.
I totally sympathise with you and do feel these type of professionals who arent truthful to their profession should be monitored and struck off the register for spoiling people’s lives as this is certainly not what their job is about.
Did you go in coma because of asthma attack?
I agree with you, and have experienced similar regarding my asthma. I do suggest you speak with pals, I'm not sure why social services have become involved unless they suspect you of harm/mistreatment of your daughter? Or did you get them involved. Be very careful where ss are concerned, they will side with medical (so called) professionals . Are you being accused of wrong doing towards your daughter? Who has referred you to social services, and what is child in need? What are they saying she is in need of that she isn't going to already getting? What is it they are trying to get you to agree tobthat if you don't child protection will be put in place?
I was placed into an induced coma due to my asthma attack, and can say everyone whom cared for me on that day was extremely lovely in comparison to what happened the day before. x
yes they are manipulating the system by referring us with baseless allegation whereas they know the truth and trying to hide behind this referral. They want to contro Us through SS. They haven’t said about harm but trying to say we don’t follow their plan knowing her asthma is fatal and trying to hide behind this referral as I told the doctor at a specialist level She wasn’t assessed properly. He didnt like the idea I kow what they are doing so did this referral In order to save themselves.
They are putting baseless allegations so we stay stuck with SS and they could prove us wrong and also control us because they have power. Social service doesn’t want to listen to us EVENTHOUGH they know we aren’t doing any wrong but it’s been two months and they aren’t giving written assessment rather forcing CIN if we disagree then child protection.
I feel stuck in this system just because I wanted to make nhs better for other people and pointed out mistakes at consultant and specialist level. They want people to buy their side of story because they are professionals with credibility.
Is she9 on montelukast?
yes she was twice once when she was young and also after life threatening attack but if only gives her aside effects and doesn’t help …. Her asthma is severe therapy resistant but we aren’t getting the right diagnosis and she’s suffering due to the medical neglect and misdiagnosis it’s a battle but we are trying alternative therapies homeopath med to try and get some control … hoping for the best
Have they considered if she is suitable for biologic therapy? My young grandson had montelukast cpl times whn young,with no effect but given it as chewable tablet at nt T 4yr old-its literally been a gamechanger for his asthma x
silent chest is a sign of severe attack - not all asthmatics wheeze and O2 is only one measure and a low O2 can be the sign of something else entirely. It’s unfair to be critical of individuals in the medical profession ax asthma presents do very differently in different people.
Healthcare professionals shouldn't be expected to know everything, but they should be expected to be aware that they don't know everything, and that as you say, asthma (and other conditions) can present differently from the textbook and differently between people - even if they don't know everything in detail. They should at least be open to this and not be insistent that 'this can't possibly be asthma because I'm not personally familiar with the presentation'. Particularly since it's actually not that uncommon for asthmatics not to wheeze/drop sats, as you say - and guidelines don't actually say it is required.
I do have sympathy for healthcare professionals with some of the guidelines mind you - they are often really badly written and. Very confusing/misleading especially to medics who aren't that familiar with the area. But at the same time the staff do have some responsibility to know the basics and be aware of their limitations. I've met senior respiratory doctors who really don't seem to know the most basic things about asthma, and I think that is shocking. They don't need to know everything, but it is a common disorder in their speciality and they should know at least common basic signs and symptoms - or as I said, be open to the fact they don't know everything.
For example: having a cough as part of asthma is not an obscure sign that they can't be expected to know about, especially if a patient or parent says they typically have one with asthma. Not every cough is asthma of course, even in an asthmatic, but it's still not appropriate for them to respond with something like 'cough is never an asthma sign'. (This is not an exaggeration - I have heard this more than once, along with 'all asthma wheezes' and 'asthma doesn't increase your heart rate').
I think it is reasonable to be critical if a healthcare professional consistently doesn't listen to patients, parents/relatives, or other professionals, isn't aware of their limitations, is arrogant, and endangers someone's life/and or health as a result.
I definitely think there are many problems with the system and the General Medical Council can at times be too draconian and unreasonable towards individuals. But individual professionals do also have responsibilities and professional standards to meet, and it isn't unreasonable to criticise them if they're consistently not meeting those.
thanks lysistrata for such a good explanation even I can’t express here what we have been and going through as a result of their ignorance because they never took my daughter case seriously as it represented differently. She has very bad asthma and they know it but working on a different agenda than to help. They purposely don’t mention her feno/lung function and hiding that she’s uncontrolled. It’s very hard to believe unless you experience. They misuse your rights and don’t follow the protocols and it can cost a live or lives.
My daughter has suffered in their hands countless times due to their misdiagnosis and they have made wrong decisions at the wrong time which is crucial in asthma management and has affected her health/prognosis and now they want to hide as I clearly told the their mistakes which is a shame that they have gone so low not to help her with school just to prove themselves right and forcing us to agree through Social services referral and making the whole family suffer by representing non factual information.
They know the fact that asthma represents differently in different individuals and needs special management when it can’t be controlled under GP or secondary care this is why nhs has specialist centres and believe me it might be our experience and I seriously wish no one else has gone through this. Wherever we go they contact each other and all the respiratory professionals work alongside by no means I’m saying it’s wrong but working as a Mafia to hide their mistreatment is not what you would expect of these and I believe none of these follow actual policies and practices hence making patients suffer. I totally understand they don’t have the power to control every attack or asthma but being open and honest is very important for the patients and families.
I used to blindly follow the doctors advice until two years ago and after that as my fighter kept suffering for 4 months with daily attacks and our local hospital just thought it’s not normal and did nothing until I raised my voice and once they realised it’s their fault they purposely messed and added GERD other comorbidity to further spoil her health history after the complaints. I knew from start it’s nothing other than asthma ans she’s very strong history (major attacks) and it proved when omalizumab worked for 5 months. Now we are left with very limited options of two more biologics and even those will be trial so they could have certainly helped if they took her asthma serious. Even in tertiary they thought it’s not normal to have such a bad asthma and to check they gave her triamcinolone injection and reviewed her and realised that how bad it is after making her suffer for 2-3 months and recently she was told we gave you expensive treatment when I questioned the fact that she didn’t get right treatment at thhe right time and certainly could have avoided triamcinolone because she had two major attacks in the previous year which is NHS law.
I would just suggest to everyone don’t blindly follow them do your research and sometime you personally have to get them to exercise your rights as their plan was to give three injections rather than biologic but I saved my daughter from two more and now when they have realised it’s therapy resistant they have started hiding truth and changed her asthma diagnosis from severe to complex.
Doctors aren’t saints it’s true saying. Good luck to everyone and hope all of you get good people around you to support you as it’s crucial when you are suffering especially with life threatening condition.
This is a great thread with terrific advice and info.
I was in the A&E just last night as I have been in a terrible flare that is getting worse in spite of being on prednisone for a week and a half and upping my Ventolin. I woke up with my heart pounding and lungs on fire really struggling to get a breath and I felt frightened enough to head to the hospital.
I got there and my BP and pulse were high but since my oxygen was 97% and I wasn't wheezing a lot and panting, they all looked at one another and then told me to just go see my GP this week.
I explained that I was worsening in spite of being on pred for 9 days so the doctor decided to give me a neb and keep me there a few hours. I felt well enough to go home and am now resting and trying to recuperate.
It's so hard to feel like there is a battle raging inside you internally and to be unable to get full breaths and be so exhausted and scared and then to try to get emergency care as per your asthma plan only to be turned away because you don't fit an outdated overly narrow textbook definition of a person with an asthma attack showing up panting pale sweating with low oxygen and loud wheezing. That is only a tiny portion of severe attacks.
How can we train more emergency and A&E personnel on this?
I totally understand your struggle and honestly how outdated most of these A&E procedures are … I can understand your condition because my daughter has same issues she can’t take full breath mostly due to uncontrolled asthma and requires high doses daily symbicort… if preds aren’t working make sure you keep an eye and get yourself reviewed properly because it can be many thing’s deteriorating your asthma and needs to be managed early on to prevent severe attacks… my daughter has attacks daily and I never knew asthma could be this worse … as you are only on Ventolin as a reliever I feel there are other options available or speak to Asthma Uk line … you need good advice … best of luck
Does your daughter's peak flow drop when she is in severe attacks?
Hi, I have been having the same issues for about 5 years now and its a battle with the paramedics half the time getting the right treatment with them saying something in the region of "you're not wheezing and your sats are good so a neb will be pointless" and then they have to read previous visits and then they give me a neb
I am on constant steroids and was on a biologic therapy for my asthma and eczema but one didn't work at all and the other one gave me really bad conjunctivitis so that got stopped quite quickly.
For my skin they have put me on a JAK2 inhibitor which has worked wonders
My quality of life has vanished completely and I have had to give up a job I completely love to a desk based job
My consultant is wonderful but it seams like we have hit a brick wall with any treatment at the moment, just all a bit depressing now
How old is your daughter. I asked because what is paediatric or adult medical care doing to help your daughter? Is she under the care of a specialist respiratory clinic? When you say normal oxygen but high Co2 what exactly do you mean? Are you referring to peak flow metre readings being normal for her, and her index spo2 blood oxygen level readings being high? As I'm not sure what you mean with Co2. xRight now these past 2 - 3 days my asthma is flaring up, my peakflow metre reading last night best of 3 goes was 280 but my spo2 blood oxygen levels keep dropping to 88 then rising to 90, 91, 92, 94, 95 and then back down again and rising up again before dropping again. That's sat upright, arm straight, finger straight and not moving about. Currently finger monitor says 02 is 93 beeplng at me then 94 not beeping at me and pulse 92. My pulse is a little on the high side for me it is normally between 78 and 88, my o2 levels are normally between 96 and 99. I'm 48 though. My peak flow reading yesterday of 280 was good for me. Now sometimes all my readings are normal for me, and 02 is high, yet my asthma is horrendous. Also a bent arm or a bent finger can make a difference to index finger Sp02 readings. Though asthma can be appalling and all reading normal at least on the Sp02 finger monitor and sometimes on the peakflow metre too. So yes I experience normal readings/levels at times even though my asthma is flaring badly. x
she’s 14 and yes she’s under specialist care but the first biologic has failed so currently there’s option of another but don’t know if it will respond or work for sometime and then stop working but her symptoms are severe and she experiences daily and I know since her childhood it was like her oxygen drops late when it becomes life threatening stage. I mean like O2 readings will be in normal range 97% and above but Carbon Dioxide I think in arterial blood has comes high something along this which they were misinterpreting with hyperventilation but it’s her asthma which doesn’t let her breathe out and she’s bronchospasm where she can’t breathe in and out. Her asthma is quite complex.
Thanks for sharing I just hope people understand from each other because doctors say something and science something else so it’s best platform to share real life experiences.xx
Hi, I'm not an expert, but I know with asthma, oxygen doesn't need to fall to have an attack, or struggle with asthma.
The body uses oxygen differently to what an oxygen reader states. This isn't how asthma works. The body is very good at reserving& using oxygen to a degree that shows on monitoring all ok. The reality is so very different, unfortunately, even today medical science is way behind on educating the system it teaches. Health professionals still don't have a clue and have and do put many people's lives at risk, especially with this exact topic.. Turning people away because they don't reach the outdated criteria, to meet the asthma attachk rules.
Even the peak flow is outdated, and doesn't work for all asthmatics, especially when it's the lower half of lung tubes effected.
So if you can't breathe, chest tight , etc then you are having an attack regardless of oxygen levels or peak flow readings.
My_fairy in reply to
100% I am glad I am getting some good responses and it makes my daughter feel better because what they are saying to us isn’t true and they themselves listen and give her inhalers and trying to hide the fact she’s uncontrolled for so long by giving this excuse that her oxygen doesn’t drop and don’t want to mention in the letters either obviously isn’t the right work ethics.
I'm really sorry to hear this, I know fine well how frustrating, upsetting it is getting the right help , advice knowledge. Especially when it's your child and you need the letters and medication.
But I am beyond the belief now especially children's so called experts, that they really can, will help. That's all so experts, it's really an outdated system.
To get the answers& help for myself, I relied on Asthma UK, in fact in all medical situations(bar 1 relied on self), used charities not the NHS or even private health.
I'm lucky to have found 1 good respiratory nurse,who is clued up, we found for me(servely uncontrolled asthma, on severe high medication doses& countless steroids). That the medication itself, upsets asthma &vice versa, round & round on a merry go round.
We found that reflux(suspect GERD) problem&allergy& hormones.so I thought was quack talk, but she told me to drink small amounts milk, when had cough or felt tightness, leave it for while to see if goes before taken inhaler.
She told me to drink actimel daily, and too take 2 puffs ventolin and wait and see if clears, rather than keep taking as feel it's not.i thought she is trying to kill me, cure my uncontrolled asthma with milk? 😂
She prescribed a new steroid nasal spray,(has your daughter this? To prevent allergy triggers?)and stomach tablets. I take anti histamines as well& have cut doses down.
Oddly my attacks are less often and when happen, not as severe and only need 2puffs to rectify most the time..I never thought this would be possible.
So I'm not saying it's same for you daughter, but I wonder, if like the respiratory nurse told me, need to find , prevent the cause rather than the cure to the effects. Otherwise it's never ending cycle
I have been with the respiratory team 3-4 years now and nothing was done to change things, just increased doses and non stop steroids, ambulance , hospital trips.
My_fairy in reply to
yes milk helps her when she’s high inflammation her asthma is so bad that she’s on highest possible meds and you are right it’s hormones involved we feel … the GERD meds make no difference and only steroids help but issue is her asthma can stop responding to treatment … it’s been two years steroids hiding work as much as they should so struggling to control …
Don’t know for how long you can stay uncontrol because I continuously worry about her like change of airway shape ..we are trying alternatives like homeopath and herbal to help her …
in reply to My_fairy
Yes ,I understand. But I do think more medication causes more problems, side effects.. Yes, things will become less effective, steroids are severly dangerous. Hate them so much but yes to be able to breathe , outweighs.
Steroids and high doses of inhalers, triggers upsets the stomach, and causes more acid reflux, then to help the asthma, more medication is given, more steroids, that effect the stomach, acid reflux, then more medication is given to control the asthma, so you see the pattern? To get to the route cause is key.
But. It will take time, as she had I presume been ill for long time, with uncontrolled asthma.. So, it will take time for the body to adjust, damage to undo.
I was told to drink about a thimble of milk, throughout day when need.. I found gaviscon at times also doesn't work , but other times it does. Yes at times I get flare up of phlegm despite medication and. Bam goes my asthma. But dropping doses inhaler, medication etc, taken milk, the actimel daily, gaviscon 4 times day & before bed has really helped. I didn't think anything would, as medication was no longer working. Steroids was all there was.
Maybe she needs a change in stomach tablet medication? To one that will work. My respiratory nurse, prescribed a new 1 that coats all the way down unfortunately my doctor's surgery isn't the best and yet to get them.
I believe this and what ever allergy is triggering the asthma, is the cause need to find out what it is.
The only alternative is steroid injections. But it's best to try to get the route.
I think you need to find a good respiratory nurse or doctor
yes 🙌 you are right .. getting to the root cause is crucial .. we are trying to get her best treatment…
in reply to My_fairy
I know you are.. your are brilliant! Please make sure you understand how fantastic you are.. She is very lucky to have you. It's scary as a parent. Helplessness and fear, you are doing amazing though.. It's so utterly sad, that she is so ill, so cruel and unfair, but I believe you will get there, I do. As you are trying everything and thinking outside the box, not many can do that. Just accept the basic answers they are told, or shrug off brush offs, or made to feel annoyance by doctors etc who just haven't a clue, or understand.
Make sure you take time out, to breathe yourself and feel peace.
I'd given anything to have a mum like you , as my asthma was ignored until 13, and accidently found because was always suffering stomach pain and couldn't eat food.
My mum used to trigger my asthma bad I had no idea what it was, just burning pain, that didn't stop for hours, days. So, you are doing a great job don't forget that.
I'm hoping when hormones calm, will help as well. Triggers are really hard to find, I read today, that even things in food can trigger, the amount of chemicals today I would be here for ever looking to see what triggered me this time. Sometimes there just seems no obvious reason for it.
It is scary and debilitating. Sending your family lots of love 💓
aww thanks for such lovely response… you are definitely in my prayers too and wish you the best of luck and hope ever you be who is suffering from any disease finds a cure and lives better life …x
I react "oddly" (thats the best and only way go put it) .... ive had "reduced air entry" ... but not wheezed, been struggling to breathe and coughing my head off .... and some doctors (the terrible ones) go no wheeze no asthma, can't help you bye.
I've had 2 challenge response tests (different irritants) to see if I have asthma.... and didnt react
However tertiary care has decided that I "probably" (as they don't seem to be able to prove it either way) have a mucus producing asthma sub-type and large airway collapse, the collapse is confirmed with a dynamic CT and dynamic xray so there's no denying that.... and in itself it's rare but it's even rarer to have it on its own without something else (normally COPD or Asthma)
Unfortunately there is still a lot we don't know about the respiratory system
yes asthma can present so differently therefore it makes it harder for patients because some doctors at consultant level feel they know everything and thus listening to patient is very important and doctors shouldn’t judge people because this is what I have seen so far with daughter’s care .. listening to patient and family should be utmost to treat and save lives… reduced air entry is what caused my daughter severe attack .. are they going to treat the airway collapse?
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