Hello,
I am a registered nurse and a baccalaureate nursing student. I am interested in learning more about your experiences with the influence of air pollution and/or allergens on your asthma. This will help me understand the real life challenges of patients with asthma, and I will use this information to better care for my future patients. Thank you.
What sort of things do you want to know about? How much it triggers us? Long term v short term issues? How we work to avoid things? Meds? Etc etc 😅
(Sorry may be just my brain not working out what you want 😅)
Haha Hi Emma! Anything you want to share about the topic would be lovely, just looking for patient experiences so I am open to any info such as how it affects you, what your solution is if any, and if you feel you have enough support from resources, doctors, etc. thanks!
Teehee enough support from drs, cons etc... now that would be great. This forum is the best support ever as we all understand and "just get it" most of us are not text book asthmatics so don't fit into the general box so feel very under supported (not all but some) 🙂
I wasn't aware of this amazing resource until I started looking for somewhere to interact with patients. I am so glad you have something like this and I am sorry you don't feel like you get the support you need from medical providers. That is part of why I wanted to do this !
Hope you get some good patient insight regarding asthma/allergy/pollution! And enjoy the endless can of worms you may have opened 😉😅😂
Yea sorry!! 🤣😂x
👍😅
Pollution:
Personally not a massive short term trigger for me unless it’s really high. Long term however I equate exposure to high pollution levels where I lived at uni as to what escalated my asthma into becoming severe. Other than then I’ve always lived in low pollution areas, but from memory never had massive issues going into London etc unless lung were already upset. However I know there will be some with this a much bigger issue so I’ll leave it for them to comment. However I know they usually keep windows shut and may use air filters in their homes.
Allergies:
Suck 😂. Hay fever can be bad enough to escalate to needing hosp admission (4? Trips this year for me between March and Sept 3 admissions). I also react badly to dust and animal dander etc. A lot of people assume I’ll have food allergies but I don’t (minus a long term egg intolerance). Frustrating as a lot don’t understand the allergy blood tests can have false negatives.
Main think I’ve found that helps is a HEPA air filter, keeping windows shut in high pollen season, washing cloths/me if known allergy contact and limiting access to that trigger (ie I have a horse allergy so I don’t stroke/go near horses no matter how much I want to).
Not very much understanding about how much allergies can affect asthma by gen pop, which can cause issues when out and about/in new asthmatics/medics with poor asthma awareness. However often it’s assumed ALL asthmatics have allergy issues and ‘must be allergic to cats/dogs’ etc. Really not true. And irritating when you keep being told you’re allergic to something due to their assumptions despite the fact you never get allergy reactions.
There’s also the ‘is it allergy or is it trigger’ issue. Some people use them interchangeable but they are not. I’m allergic to some things as I get eye/nose/throat/skin involvement on top of asthma. Other things are just triggers even if they are allergy for others, as it only affect my lungs. Allergies don’t always trigger asthma either. So sometimes I’ll just have an antihistamine, others just ventolin, and others will need both. Knowing how to differentiate helps prevent under/over treatment.
Awareness that you can become ‘immune’ to antihistamines is you’re on them long term would also help. I had 2 months of constant allergies despite trip dose my normal antihistamine before I suggested to a doc about this issue. Switched drug for 6 months and allergy calmed back down then switched back and old drug back to working a lot better.
Support:
There was little support at my first GP practice who decided I wasn’t that bad off (only getting neb weekly but wanting it more) so refused to refer to 2ndry care and downgraded meds despite the issues. They also failed to identify an asthma attack so and left me struggling for 6+ weeks before I got prescribed steroids. They wouldn’t let me book as an emergency, told me it wasn’t a chest infection causing my extreme SoB, sent me off for my 2 week hol with instructions to ‘see someone there if bad’ despite already not eating or sleeping and using a ventolin up in about 3-4 days. Then get back and another 2 week wait to see someone who diagnosed an asthma attack. There was little-no training/education about asthma given to me, no asthma plan, no PEF measurement (ever). I had no idea what I was doing or when to get help. AN was nice but useless.
Second GP practice was better, but I know I was discussed as a ‘time waster’ by docs who hadn’t met me (the doc I was seeing told me he fought my corner there) and then changing their tune when they did see me 🙄. But the GPs I saw regularly were very supportive, both with my asthma care, and with pushing others to do things (like sending me to hosp with a letter after a&e told me to go home as ‘nothing we can do’... whatever it said I got an apology from the nurse I gave it to and much better care, having refused to go to hosp for over a month as they told me not to come back, despite 2hrly nebs the entire time...).
Hospital care/support was hit and miss. Depended who was on duty and how interested they were in asthma. Some treating asthma like COPD leading to much bigger issues and frustrations at my end.
By this point everyone was just saying ‘nothing we can do til tertiary see you’ which whilst honest wasn’t helpful. And that was hosp AN and con, whilst GP AN was ‘you’re under hospital so not much I can add’. GP was the most understanding, coming up with the occasional suggestion to prompt docs to trying them.
First tertiary was not a good experience. Didn’t feel supported at all, by anyone there. Didn’t even know the name of my consultant despite a year of mabs... ANs wouldn’t help as ‘we don’t give asthma plans’ whenever I had questions that weren’t directly MAB related and were very difficult to access.
Current (moved regions) GP accepts that for asthma they are my drug dealer or the person to kick me to hosp if I’m being stubborn or can’t work it out myself 😅. GP AN accepted under tertiary so ‘little point’ to asthma review (have them regularly at hosp) but made suggestions of things to ask about. Local hosp con focus is asthma/severe asthma and we get on well. Local ANs are 50/50 about understanding severe asthma. Some are fab, others treat me like an idiot, or like it my first issue. Easy access but who answers the calls strongly affects if there will be any benefit to me. They also contradict each other which isn’t helpful. One wanted me in hosp, I told her I wasn’t at that point yet, she arranged a check in a few days later for if I ‘hadn’t given up by then’ 😅, that nurse ‘no. Don’t come. We don’t want anyone in’ 🙄🙄.
Tertiary an - good but little contact (as transfer so didn’t DAP with them and meet the team). Usually returns a call within 24-48hrs. Listen and will chase an idea with others if they think of something. Tertiary con - much better than first one if only cause I’ve met him a lot and know his name! 😅😂. Usually listens.
Changes/advice:
Biggest thing I’d have changed support wise is being told about HU a lot earlier. Often you either forget, don’t think of or run out of time to ask questions at appts. And then if it’s something ‘minor’ or that you’re embarrassed not to know you don’t want to ring to just ask that. HU helps solves that as can ask other asthmatics. Also being informed of the AUK helpline earlier. Had I known of them back during that first attack it wouldn’t have been as bad as it was cause I know now they would have sent me to hospital. And they would have told me what I needed (asthma plan etc) before things got too bad. A lot of the ‘every asthmatic should have’ list I didn’t have until I was classed as severe and waiting on tertiary care.
The other things that I appreciate in medics is 1) listening to the patient, 2) not assuming it anxiety/FII (a lot do this which is both frustrating and dangerous 🙄) and 3) admitting when they are out of their depth. Asthmatics aren’t usually hypochondriacs and they aren’t time wasters so don’t assume they are or that it’s ‘only asthma... it’s not like it’s X’ (something I’ve heard in the past...). Also remember every asthmatic is different. What triggers one may help another, and vice versa. Not everyone will benefit from living abroad/by coast, not everyone needs to get rid of pets. Also being SoB is not normal, so don’t let docs/patients accept it. Push for meds to be escalated or for further referral if the patient isn’t getting controlled! Many patients really struggle to advocate for themselves, especially when they don’t understand/know what options are out there or don’t know the questions to ask, especially when they’re already tired and fatigued as they can’t breathe properly.
Further reading;
Going to link you to some other posts that you may find useful to read. They are written for asthmatics, by asthmatics, but should give you our view of things 😉
What PF actual is (it’s amazing how many medics don’t actually understand it!) healthunlocked.com/asthmauk...
Everything you need to know about steroids (included weans and withdrawal - another thing docs forget!) healthunlocked.com/asthmauk...
Trigger Jenga (different levels of triggers) healthunlocked.com/asthmauk...
Top tips for asthmatics (from your POV ‘what can I do’s to combat/fulfil them before patient asks) healthunlocked.com/asthmauk...
What I wish I had know but worked out eventually (same reason as top tips for you 😉 will help with your awareness/support) healthunlocked.com/asthmauk...
I’m not sure what area you work in (GP, A&E, wards etc). But hopefully these will help in general even if not specific to pollution/allergies 😅. Sorry for the length of this... as I said before I couldn’t really work out what you wanted so hopefully this is of some benefit 😅🙈
What an excellent report on the current issues with our care as asthmatics.I have been diagnosed with eosinophilic asthma, brittle asthma,
Bronchiectasis, and asbestos exposure, [retired plumber and heating engineer].
I am currently in hospital recovering from a severe asthma attack, isolated in a room which is smaller than a prison cell.
During this stay I have not been treat at all well.Only time that anyone has attended to me was to do observations, Dr.s Round and meals. Nobody looked around the door and asked if |I was OK, left for over 6 hours without a communication buzzer, This is the tip of the iceberg regards my illness
I am suffering with an acute stabbing chest pain, and three doctors had different diagnosis the first said it was a collapsed lung due to x-ray image,the second said it was pleurisy without diagnosis and the third said it was something else which I can not remember what it was but it would take 2 weeks to recover.
The only tests carried out in order to ascertain what the problem is was to do ECG [3times] which all indicated that there is no problem with my heart, but a doctor prescribed a GTN spray which is used to dilate the arteries and does not have any effect on asthma problems.
I have passed out a couple of times and they have said it was vertigo and after consultation with an ear and throat expert he agreed with me that it was due to my asthma{LACK OF OXYGEN] That I had passed out and not vertigo.
This is the tip of the iceberg with regards my current situation as I could continue with this epic but it will end up like war and peace.
Wow Ziggy, you are dealing with a lot! I am sorry you feel isolated and it sounds like you're in a frustrating experience trying to figure out what is going on. Did the stabbing chest pain and passing out start at the hospital? Or were those ongoing issues before you had the asthma attack that got you admitted?
No both issues have been going on for a while. Gladder I am now back at home. and on a brighter side my GP telephoned me a couple of hours after I was discharged from hospital.
that is great news! I hope they are able to find a resolution to your other problems soon.
thanks Emma. I really appreciate you taking the time to write such a thorough and informative post. It is definitely helpful and very eye opening. I am shocked to hear of your long, frustrating process to get the care and support you need. I hope the newest doctor you have will be better. I personally know of 2 people who passed away due to asthma attacks, so I can imagine how infuriating it must be to hear someone say "it's only asthma." I can't believe someone would say that about a disease that affects your ability to breathe. The very nature of what asthma is would make you think all medical professionals would take it seriously. P.S. I will check out the links you gave me as well.
Unfortunately poor care can be common, at both a GP and emergency level. On here we may falsely represent the issue common-ness as no one complains about good care 😉😅. But there can be the general believe that ‘it’s only asthma’ in some (a lot) practices and in emergency unless you are completely typical in presentation (wheeze etc).
Docs tend to associate panic with asthma therefore think we over exaggerate if it’s asthma or think it’s a panic attack (even when we aren’t panicking 🙄). Everyone assumes anxiety is an asthma trigger, which it can be - but not for everyone! And even if it is the underlying asthma still needs treating.
I’m assuming you know the asthma stats in the uk. It’s always a pleasure to help someone who may be able to change that or at least reduce the chance of it happening to their patients!
Allergies are an absolute nightmare for me.
Perfumes, scented laundry, air “fresheners,” cigarette smoke, vapes, pet dander, bbq’s, log burners, etc etc. All set my asthma off. I don’t have to see or be near any of these things. I don’t have or use any of these things myself, being around other people who have these things is enough to set me off. I rarely get the usual itchy symptoms - it just seems to affect my breathing. (When I was younger my eyes and nose were worst affected, it would then progress to my chest.) It’s all in the air around us all of the time.
I have been extremely limited socially since most people have a cat/dog or smoke. It dictates who I can be friends with and where I can go. (I have never been on an airplane for this reason.) It’s now dictating my children’s friendships.
I had an attack November 2019, from which I have yet to recover. In the period from then until the first lockdown my breathing worsened (to a greater degree and quicker than usual) every time I was near other people/in a public place.
I have shielded since March.
People seemed to have more bonfires/bbq’s this summer and there were many more fireworks for a longer period. There also seems to be a trend for log burners- woodsmoke is a big problem for me.
I have always had my house windows open a lot as it helps my asthma but this year we have had to shut them a lot. My children can probably be heard down the street yelling “smoke!” as they tear around the house shutting windows.
Drs surgeries can have scented air fresheners, health professionals can wear perfumes/scented products/ have pets at home/ cigarette smoke on their breath etc .
Sometimes it feels as though the world is out to get me. It’s like Russian roulette every time I leave the house.
And that’s all without Covid!
So relatable. I have this exact problem. My husband has to vet places for me because added in I have no sense of smell due to chronic allergic rhinitis and therefore can not tell who/where to avoid for strong scents or triggers. He has had to become quite adept at learning my triggers to help me avoid them. None of my friends really understood my withdrawal from social events because of this problem and my family never accommodated my triggers when I grew up (parents both x40 a day each smokers inside the house and mum wore perfume. She never accepted flowers into the house though, she had mild hayfever so I guess she could relate to that at least) so I was at the GP a lot as a child. I love to be social though so it can feel incredibly lonely at times. Most lay people think you're being dramatic when you ask them to stop something they enjoy (perfume/smoking etc) near you or risk you not breathing. Very frustrating.
wow, I had no idea that about this aspect of living with asthma, and I appreciate your honest description of what you deal with on a daily basis. I'm wondering if you discussed your extreme sensitivity to these things with your doctor and what if anything has been said/done to try to rectify it?
It can be broader than that. I was shocked (and complained) once when I had an appointment at the eye clinic of my local hospital, nothing to do with my asthma. All toilet facilities in the hospital had those air fresheners that keep pumping it out. Anything like that has no business being in a hospital, in any department, as many people with various chest or allergy issues could react. As said I did complain before I went back home.
My issues/triggers have nothing to do with allergies, it is all to do with reactive and irritable airways. So other than infections, for me it includes cold air, anything that burns, not just wood burners etc, but also toast and some cooking, including my own sometimes. Scented stuff of various kinds, and don’t start me on scented candles!. Various cleaning materials. Many of these things irritate my chest, but if I can remove myself it is very temporary. All these things add to indoor air pollution which is a bigger problem in society than outdoor air pollution some research has shown. I can also react on outdoor air pollution, like traffic, but that is much less frequent for me.
you're right, a medical facility should be more in tune with the respiratory struggles their patients are facing! Do you use a HEPA filter in your home?
No, I don’t need to as dust can irritate but is not my major trigger. I am careful to use our cooker hood however, and also good at closing doors when bread is being toasted. I am also by and large avoiding candles, obviously scents etc. I am lucky that my husband is very happy to support me in all these things. And, oh, I use a dehumidifier, especially around washing and drying laundry.
wow, I had no idea that about this aspect of living with asthma, and I appreciate your honest description of what you deal with on a daily basis. I'm wondering if you discussed your extreme sensitivity to these things with your doctor and what if anything has been said/done to try to rectify it?
It is not extreme for people with asthma. If you mention it to you AN nurse they clearly are aware of such issues. It is the rest of the world who need to recognise how difficult AND polluting many of these things are - and then avoid, starting with air fresheners and scented candles. The human species need neither.
I'm sorry for the struggles you deal with everyday. I never even thought about the influence asthma would have on a person's social life but now I can see how much it can affect your life in all areas. I would like to ask you the same question I asked Hippopotamai: I'm wondering if you discussed your extreme sensitivity to these things with your doctor and what if anything has been said/done to try to rectify it?
My bet the advice is;
*try and avoid triggers*
*daily antihistamine if it’s an allergy*
That’s all we get for triggers. So some of us cross the road when we walk passed lush, some of us carry our own antibacterial gel cause the ones in some shops can trigger. We avoid aerosols and use roll ons, we have *that* convo with are families and friends so they stop it too. Some will have to be frank with significant partners if sex triggers, which I’d imagine is always an awkward convo to have. We avoid animals no matter how much we love them, we constantly have to work out which is worse... dust is a trigger but so is hoovering. Need to clean things, but the chemicals trigger. For some people damp/mold is an issue - but if they rent with a bad landlord can they afford to move or to threaten with court if the landlord refuses to treat it.
Med allergies can get some disbelief depending on what it is. You need to make sure it’s not too hot or too cold. Not too damp and not too dry. Exercise helps long term but worsens short term so what do you do? Do you sit inside in summer cause if the pollen and the smokers, or do you risk it? Do you give up the pet you’ve had for years and your family/kids love on the chance it may help? I don’t drink alcohol as that triggers, meaning uni was hard even if people did understand. You lose that social aspect.
But things we can’t control - Thunderstorms, pollen levels, stress, infections and other people, those we just have to treat. The lack of understanding that for some of us all we are doing is delaying a hosp trip when we use pred, but as soon as that ends we are in hospital.
Some asthmatics have very few triggers, others react to basically everything... but no matter what the onus is on the patient to avoid them.
Yup, avoid (nigh on impossible) and anti histamine daily.
yeah there is no way to avoid these things. And as you explained even if you don't leave your house you're still exposed to these things! 🙁
Generally told to avoid life, be the proverbial "girl in a bubble", change jobs, avoid family/friends. "Get on with it" or "You would be fine if you were really taking your medication". I know medication compliance not great among many asthmatics my dad and sister never take theirs, both smoke, drink and other than both being lactose intolerant and atmospheric pressure headaches don't suffer with triggers/allergies. I on the other hand am always a snotty mess despite full compliance and avoidance of so many things. I have had to learn to manage the condition mostly myself through trial and error and anecdotal evidence. I did switch to fexofenadine this year after a horrendous asthma attack which is really helping, but it took months of trying to get the right help before a change in medication was offered. I am sure like many this year I was told "Dont present to A&E or the GP practice. In these unprecedented times, you'll have to make do. I'll give you week of prednisolone. You'll be fine." It felt worse because since moving to that GP a couple of years ago i haven't needed them to intervene for my asthma as i am usually well controlled. So they didn't have much insight into my record.
I am glad you have found a better medication for you, and I am sorry that you have been discouraged from visiting the doctor. I shudder to think of how many people really do need the help and are reluctant to go these days because their doctors basically tell them not to.
It’s the tag line that often follows it tho...
‘Try to avoid your triggers. Don’t let asthma control your life’ 😅😂🤣
We’re either not doing enough and that’s why we’re bad or were too ‘nervous’ and it’s anxiety not asthma cause we’re too restricted/over think things... 🤦♀️
Gotta laugh at multiple contradictions within medicine
Right, sounds like you just can't win sometimes. Only someone WITHOUT asthma would say don't let it control your life. 🤨
Just like how men are more likely to say periods can’t be that bad... even to patients with endometriosis, PCOS and PMDD 🤦♀️
Depending on what level people’s asthma are, some put more effort in than others. Mild tend to have compliance issues as they don’t feel bad and have very few triggers but then don’t know how to cope when they discover a bad one. Moderate tend to have better compliance and less triggers and easier to avoid (as they are less). Severe tend to either be super compliant or not really compliant at all (depends on if they are ‘really’ severe or difficult but controlled when they take meds) and they tend towards either living in a bubble in fear or only avoid massive triggers and just ‘cope’ with the issues/fall out and put up with the sometimes 🤦♀️ stories in a&e ‘what bought you here?’ ‘Welll...’😅.
Lots of averaging out there tho Ofc 😉.
I am reading these posts from fellow sufferers who have even more troubles than me dealing with there asthma or Rhinitis . I have mild asthma and find one puff of Fostair before bed is enough. But in the morning I have to blow my nose for an hour to clear all the build up from the night. Alcohol is a nono as it will make me sneeze for several hours except when skiing in the mountains when it had no effect. Which led me to realising that we live a very high humidity climate in the UK. The mountains have a dry atmosphere. Just thought I would add this to the conversation.
It is definitely interesting how different environments and scenarios can make such a huge difference on the severity of someone's symptoms. I've gathered from this discussion that a lot of you spend a significant amount of time doing trial and error on your own to try to isolate what affects you the most.
Sometimes it's difficult for a patient to pinpoint what has triggered an asthma flare up. We might not be aware of changes in air pollution, especially when caused by atmospheric conditions, and usual allergens may not be the culprit. I know I have days when my asthma symptoms are worse, for absolutely no reason that I can recognise. I've learnt that repeated exposure to low humidity (below 30%) is a trigger for me, in that my respiratory system compensates by producing mucus. Then the infection cycle begins. Modern workplaces use air handling systems all the year round, to cool or heat. The cumulative affect is low humidity. Occupational health intervention maybe more appropriate in order to address the problem, supported by medical treatment.
Low VitD levels has been a problem for me in the past. In the UK we don't get enough exposure to sunshine all the year round but as testing patients' VitD levels isn't part of the asthma test regime, it goes unrecognised. Low VitD levels will result in a poor immune system. So we end up having repeated colds and chest infections which are treated but will reoccur because we're not looking to rectify the underlying problem.
Asthma meds can be the culprit for some patients. It's difficult for patients to advocate for themselves as it's not uncommon for health care professionals resist patient experience in this area. It maybe a sensitivity to steroids or antibiotics. And Aspirin sensitivity isn't tested even though up to 20% of asthmatics could be affected and should be on dry powder inhalers. Knowing about sensitivities to medicines will help treat the patient.
Asthma symptoms are not universal. Every patient will present differently. Some won't wheeze or have bad stats but will know how unwell they are and need emergency treatment. So communication is key, believe what the patient is saying.
Hi, I am very interested in the content of your third paragraph. I am awaiting a hospital appointment which I am hopeful will agree with my supposition of my current problem.... if I am correct, then it’s contrary to what the two young GP’s are saying. Thanks for posting this comment, it helps me just now to read it.
Bella-Bestia
I've learnt the hard way about medication sensitivity. And I know I'm not the only one. It's particularly tough for asthmatics who have steroid hypersensitivity as some reactions can be delayed. Fortunately my asthma nurse is also asthmatic and has experienced what it's like to be on the wrong meds. All the best with your appointment.
Thanks. Hopefully I won’t wait too long for it to arrive! My referral was marked urgent..... but it was sent almost 4 weeks ago.... plan to call the GP at the end of the week if still no word from the hospital.
I would imagine not being able to pinpoint the cause of asthma exacerbation on any given day can be really frustrating. I did not know about low humidity as a potential influence on asthma, but now that I do it seems like it would be hard for you to escape if it is an environment found in most workplaces. I am definitely interested in learning more about medication sensitivity, how did you learn about up to 20% of asthmatics being aspirin sensitive?
I learned about aspirin sensitivity back in 1982 and subsequently researched it as it affects me. Anywhere between 8% and 20% of asthmatics have a sensitivity to aspirin but that sensitivity can range from mild to severe. Just Google it and there's a wide range of hits. thorax.bmj.com/content/55/s... Brompton do have a specialist allergy centre, including awareness about sensitivities to medicines. rbht.nhs.uk/our-services/dr...
I'm not sure about air pollution. I used to cycle to work in Central London without major issues. But I am a very allergic person. Dogs, cats, horses, all furry or feathery animals. Grass, dust, smoke. Tree pollen. Grass pollen.
I had to leave a job in a care home because there was a dog n the care home. I have been hospitalised several times with asthma, but always in hayfever season. I was hospitalised whilst an oven became very smoky in a flat which was also full of dust.
I have to keep clear of pets. I hate visiting friends and families that have pets. I can't stay in hotels etc that allow pets. I avoid cutting the grass.
I'm sorry you had to leave a job due to your allergies and that they prevent you from doing certain things. I am not an asthma nurse, so not completely familiar with medication protocols. Can they adjust your medication regimen as hayfever season approaches so that you can try to avoid asthma exacerbations that would lead to hospitalization?
Yes. I usually take symbicort. I can add montelukast when the hayfever season approaches. I can also take anti-histamines.
Ok and even with these you still have a high chance of having to be hospitalized at least once during that time of year?
No. One thing I have learnt on this forum is that there are many folk with asthma worse than mine. While my asthma gets bad every hayfever season, I get hospitalised maybe once every five years. But pred once or twice a year.
Oh I understand. Thank you so much for educating me on the effect of hayfever on asthma and the medication regimen that you follow!
One of my biggest bug bears is that when my asthma is bad and breathing is difficult every action takes so much more energy. Talking can become very difficult, projecting my voice is difficult, listening is important because having to repeat myself after putting all that effort into such an otherwise simple task is soul destroying. So where possible be patient, listen and allow the person a quieter space to relay their problems or a piece of paper and pen which helps. At this point of medicated, hand tremors can make writing challenging too. Also, in hospital settings it's not unusual to be seen by a lot of medics who all ask the same questions again and again. I understand there's method in this as they observe you breathing and your talking but it can be frustrating for the reasons stated above.
It can be very frustrating for anyone to have to repeat themselves in a medical setting as they often have to, but when you add difficulty breathing to the mix its so much worse and way more draining. the pen and paper is a good idea. thanks for that.
I hate the question “do you have any allergies?” I usually rattle off a few and include any I think might be relevant. To be honest, I usually forget some if I’m forced to try to remember them all.
I can smell if I’m allergic to something. For example, to me flowers smell disgusting and it’s a very strong smell. Some people who have pets smell repulsive if I come across them on public transport. I do know that others smell nothing (I’ve asked people with me!). I can smell dogs in a house from outside the door, sometimes before I’ve even knocked of it. Not sure how that works?
My sense of smell is very useful but can cause confusion. In my younger days I’d ignore it and suffered big time.
Of course, some don’t believe me. I’ve had health professionals think I’m being a drama queen. One lot claimed I couldn’t possibly be allergic to daffodils!!! We didn’t get on very well.
Some allergies do cause me practical issues. Eg. I’m allergic to all plasters. It’s the glue as well as plasters!! Also, I have sensitivities which are different to allergies. I’m no immunologist so don’t ask me. The easiest to understand is that bandages irritate my skin when they rub against it.
Antihistamines don’t get rid of symptoms but they do dampen things down. Even fexofenadine. Eg. In summer I have to avoid plants such as lavender, roses etc.... and a couple of my neighbours plants when they’re in flower (I keep windows closed).
That’s probably enough. The person who mentioned that you should never take one type of antihistamine for 6 months at a time is right. A lot of Drs aren’t aware of this.
Plaster allergy wise; latex is in almost all hospital dressings/plasters, even most the ones that are ‘more’ hypoallergenic. Even if you use mepore which is apparently latex free, most plasters/dressings use acrylates for the glue.
Both of these can cause contact urticaria or contact dermatitis, however if you tell medics you’re allergic to the dressing they tend to not believe you until removal when they see the blisters... 🙄
So on the plaster side of things if someone says they are reacting listen and maybe see if you can get a med regime changed from the doc to increase/add/change antihistamines to try and control it, if a dressing has to stay. Personally with cannulas, as soon as I know I’m off IVs I’m asking for its removal, but that can take over 24hrs if I forgot to ask the doc as it’s seen as unimportant/low priority etc. These reactions are why I tend to reject cannulas within 24hrs I think so veins etc collapse. It also slows wound healing as during the ‘keep it covered’ time my body is reacting to the dressing creating more inflammation etc and increasing risk of infection as my immune system has gone off whack
Oh, I know just the one for you. This one is perfect - you’ll be fine with it. BIG SMILE!!!
I’m allergic to the soft, mushy ones as well!!!! I found this out. Never trust a smiling nurse in minor injuries 😈😈😈
‘This one will be fine’
‘This is the one for allergic patients’
‘It won’t be that bad’
‘Uhuh’ (proceeds to completely ignore)
My first tertiary hosp had to admit me a for iv hydrocortisone therapy. They literally tried every cannula dressing available, even making their own 😅. The ONLY thing I didn’t react to was when it was just a bandage but the cannulas fell out as it wasn’t secure 🤦♀️🙈. And even that I had marks from for a few hours after (I’m the sort where clothes crease marks on my skin last for potentially hours)
Yet despite explaining I have issues with all and it’s been trialled before medics will still claim they have one I’ll be fine with and/or ignore me when the rash/blisters builds which they can’t see until it’s removed 🤦♀️
Ridiculous isn’t it!!!!
I went through a phase when I needed a lot of dressings and just gave in to them. They did something similar.
When my skin gets really unhappy it gets red and drips a lot.
This happened. They redressed it in something else... and gave me antibiotics (pointless). It just dripped more. I wrapped it up in kitchen roll, bashed it a few times overnight (alternative to scratching it wasn’t very comfortable!!!).
It was a mass of soggy bandages and kitchen roll after one night. Disgusting.
They then found the perfect dressing. It was dripping so much they dressed it in an incontinance pad. NO GLUE 😂😂😂😂😂
Correct me if I am wrong, but I feel like someone listening to you and saying sorry that we have to use this bandage that you react to or coming back regularly to look underneath it to see how the skin is doing would go along way, even if they don't have a solution to the problem?
Nah. I was just lolling 😂. I can cope with the blisters and the daily cannula switches. In can just be 🙄🤦♀️ we people don’t believe when we warn. Not until they see it 😅. The bandage time I was trying to warn them I needed the plaster even tho allergy as it would just fall out. The other nurses said the same. I didn’t mind and do find it amusing that my skins sensitive that it reacts to bandages , it was just irritating that it needed replacing so quickly when everyone could see it wouldn’t work. But it was a good experiment 😂
And if you mean adjustments for the issue. The best nurses/docs listen and ensure it’s taken off as soon as it can be, and cover with additional antihistamines. The worst ignore that it’s sore and blistering under the plaster and don’t take it off - when this happens I occasionally have ‘accidents’ where I carefully remove it myself (only when I know ivs aren’t needed) 😅🙈 (I’ve been taught how to do this as I’ve had to remove them at home before)
I have already learned from so many of you that doctors seem to discredit you and not really listen to what you have to say. If you have a strong feeling that you are allergic to something I think it is worth them at least exploring it rather than dismissing it. I'm sure you don't want to be allergic to daffodils and have to keep your window closed in the summer because of your neighbor's flowers so why wouldn't they believe you when you express these concerns?
Hi. Thanks for being interested in this group and wanting to know more. I think it is important to realise that we don’t all fit nicely into clear categories which can be difficult for nurses and doctors trying to treat us as they have so little time to figure out individual difficulties. Personally, I had one particular AN at GP surgery very harsh and would always make me and others, feel that we should. It be using so many inhalers, that we should not have stand by meds and that it was all our fault that we struggled with breathing. I eventually, many years later, plucked up the courage to admit to another AN that this was the case and of course, they sided with the other AN. I understand as I am myself a RN though there are ways of being supportive of patients and colleagues and I often wonder if general RNs would benefit from a bit more mental health branch training in talking to people. I also experienced being ambulanced to A&E and the doctors being totally exasperated with me when the nebulisers and other standard asthma treatments did not work. They wanted to discharge me but I felt very ill and very unsafe so I declined to go. I was admitted to an assessment ward overnight. After this kind of thing happened a few times I researched and made a private appointment for a consultation at an Airways Clinic at the Royal Brompton bin had had a choking cough for almost two years and felt I was going to choke to death. I could not face another winter if it. I do. It think my GP surgery was happy with this but I was immediately understood and Vocal Cord Dysfunction was part of my picture of struggles. The Consultant found the inhalers I was on were unsuitable and changed them. I have not looked back since. I am not cured but I am so much better. Take from that what you need and I hope your patients benefit from it. Thank you so much for taking an interest. Best wishes to you. 💖🫁 ♥️
I'm sorry you dealt with inadequate care for a long time. The sensation that you can't breathe is absolutely horrifying. I only ever experience it when I am occasionally sick, so I can imagine dealing with it in the long term is just terrible. I am very happy you have found a proper doctor now, and I hope the people responding to me who have yet to find a suitable doctor see your post and explore this option!
I have replied but I have reread and some of the spell checks are horrendous! I hope you can make sense of what I have written! 😂😂😂
haha yes I figured it out, thanks for finding the time to respond 
Years ago when I was a student myself in Cardiff I used to walk a very busy road with sitting traffic to get to university. It was horrendous. I used to wrap my face with a scarf almost year around. I usually can't breathe through my nose due to chronic allergic rhinitis and nasal polyps so I am unable to use the natural filter of my nose and I breathe through my mouth all the time. I eventually started looking at face masks that cyclists wear which advertised filtering out diesel fumes with carbon filters and hepa filter for pollen etc. This is 2013, so years before face masks were common and I used to get a lot of people giving me a wide berth when I wore it but it helped immensely. The reduction of exposure to multiple triggers meant I was less mucoid, had less facial puffiness and I even regained some ability to breath through my nose on occasion. Even if I did get called Bain a lot! (Batman reference).I now wear Cambridge mask company masks. They are less rigid but like all masks of that type build a lot of condensation when you mouth breath. Very comfortable to wear otherwise.
Environmental triggers are challenging. I joke that I am a canary. When the atmospheric pressure changes I get tight chested and pressure headaches which don't ease until the storm breaks/rain falls. My dad and sister are asthmatic and despite living 300 miles apart now in the UK we all suffer the same complaint.
My worst year in my life I had 6 chest infections in a year (vs usually only getting x1) because I lived in a flat with damp and mold. So I will never do that again.
I don't make friends with people that smoke/vape/wear strong perfume.
I don't visit peoples houses because of air fresheners/pets/feather pillows.
I don't go out on evenings because people are more likely to drink/smoke/vape/perfume to pubs/bars/restaurants/cinemas etc. I am also intolerant to alcohol. I get an anaphylactic reaction (facial oedema/airway restriction) if ingested (even very small amounts) and if applied topically I get cuts all over my skin/contact dermatitis.
It can be very isolating. I mostly socialise online which isn't the same. I'm sure most people have had to find out this past year due to Covid-19.
Avoidance of triggers only gets you so far sometimes you just can't avoid things. I work within York Trust who only in this last year during a major respiratory pandemic decided they should finally create a fragrance free trust policy which uses language that doesn't enforce but merely suggests people be considerate. My workplace created posters that commented on removing perfume because "not everyone likes the smell" which entirely missed the point of "I stop breathing if you wear it around me". The posters only went up because an individual risk assessment had been done.
I feel like the bucket analogy for allergies is quite appropriate. If you envisage a bucket which represents a person and that allergies are water filling that bucket up. Sometimes a certain allergy will be a slow drip. Multiple allergies will fill the bucket quicker and sometimes the bucket spills over. When the bucket spills over the preventative medication is no longer going to help. Recovery treatment is now needed.
What most lay people also don't realise is that a reliever inhaler or nebs or steroids aren't a "quick fix". It may address the immediate problem or airway restriction but you now have days/weeks of trying to claw back control. Residual problems of wheeziness, tight chest, poor sleep, fatigue, brain fog, poor attention span, tremors, irregular heartbeat etc which are either a result of the attack or the medication. It's not "you've had the meds you're now ok, get on with it."
I also find healthcare professionals are unsettled by how calm I present when I have an attack. One hospital consultant was furious with me as he thought I wasn't taking it serious but I was just being quiet and calm to not exacerbate my symptoms further and didn't allow myself to be baited. The healthcare assistant who was chaperoning me between consultation and xray was appalled at his shouting.
Also, I never understood why a routine asthma clinic check up is effectively an annual report on my weight, height, peak flow and recap on inhaler technique. Asthma planning, if mentioned at all is usually an afterthought.
Sorry I appear to have gone a bit ranty there. I hope this helps.
yes, very helpful. I love the bucket analogy and will definitely refer to that in the future. I can't believe that hospital consultant yelled at you because you were calm. It makes totally sense to remain as relaxed as possible in a situation like this because you are right-- getting worked up only makes it worse. I am amazed at how some medical professionals interact with people with people so terribly!
I can absolutely relate to this! I also avoid those those things but it has been very gradual and one day you realise how many things you don’t join anymore. I also can relate to the perfume in workspaces. The cleaners in the NHS offices I used were sprayed with gusto everyday and the polish used was very fragrances which made me feel very poorly. I can also relate to you keeping calm when in A&E. It was noted I was being “mute”! In fact I was quiet because speaking was difficult and exasperated breathing difficulties. The notes also said I was Short Of Breath (SOB) but nothing else. As my oxygen levels has not dropped significantly in the meds eyes, I was fine. Nightmare. I felt that I was being hung. My feet were dancing out of my control every time my airway spasmed. Yes, I also agree with the annual Asthma checks with the AN at GP surgery. Tbh I struggle to see the point. I also have no Asthma Plan.
wow I can't even begin to imagine how it feels to not be able to breathe and feel like nobody is taking you seriously! I am so sorry you go through that.
Hi, it’s wonderful that you’re interested in learning more directly from patients, thank you. Appreciate you may already know this but the main thing I’d like to highlight is the challenge around wheeze and o2 sats. Many asthmatics do not present with a wheeze and many are also really good at maintaining their sats, with them only dropping once the situation becomes critical/life-threatening. I have both those things and when seeking emergency treatment I struggle sometimes to get it because objectively there’s nothing to indicate I’m having an attack. But it’s so crucial to get the treatment at an early stage to prevent things getting worse. The irony is that fighting for the right treatment at a time you’re knackered and can’t breathe well can of course worsen the attack 🙈
you are so right. the priority should be to listen to the patient and assess them thoroughly. many times people rely on numbers and data to inform their decisions, but if a patient says they can't breathe then we really should be listening to them regardless of what the pulse oximeter says about their oxygen levels.
My O2 sats rarely drop and many times in A&E nurses have said 'your sats are fine'. What they don't always know is that my carbon dioxide levels have risen and I've ended up with a silent chest or going into respiratory arrest. It seems a lack of knowledge is indeed a very dangerous thing.
An excellent blog written by a severe asthmatic who is also a respiratory nurse explains it.
breathinstephen.com/o2-sats...
I can also suddenly deteriorate, sometimes I don'twheeze, sometimes I do.
thanks for the link to the blog post, it was very insightful. I'm going to pass this on to my fellow nurses because I know so many consider O2 sat as the north star of respiratory assessment and treatment.
It's so refreshing to know that you are taking the time to learn and pass on any knowledge to your colleagues. 😀 I think you may find other interesting posts on Breathin Stephens site.
Definitely not for asthma 😉. Sats 92 below for us is life threatening. But most asthmatics compensate well. So some of us will be 94-96 for a few hours (when we’re usually 98/99) and then suddenly crash 88, low 80s and then everyone is panicking. Catch it early, give the neb when requested (not 30 mins later), and it’s not stressful for almost anyone.
BTS guidelines for asthma attacks highlights that you only ever need 1 marker of each level and sats aren’t mentioned until life threatening. But most meds think ok Sats = absolutely no problem.
The other trap they fall in it ‘high HR = salb’ actually that’s the asthma. Or ‘ok PF compared to average= you’re fine’ but 1 not everyone’s PFs fall and 2 average is not personal. 🤦♀️
Acute care is on page 15 (or 17/28); brit-thoracic.org.uk/docume...
I sometimes suspect differences between COPD and asthma aren't well appreciated - it seems at times it's just 'asthma is younger and doesn't smoke' and it doesn't account for variability, plus expects sats to be low and stay there. I often have a LOT of trouble getting anyone to believe the variability, though nursing staff are usually better as they see me trying to walk to the bathroom etc.
Definitely agree on the salbutamol and HR thing - it seems to be drummed into a lot of people that salb can increase HR but not that asthma can. I have also noticed that many student nurses will jump to anxiety first as an explanation for tachycardia. This seems less common among qualified nurses who prefer the salbutamol explanation. I absolutely celebrate when I get someone who understands that it's the asthma!
Oh and on the attack severity thing - my last admission I got a random extra letter from the respiratory lot saying my attack was moderate based entirely on my peak flow level. That's not how it works!!! And I felt they should have known that really, being respiratory... I have both a high personal best and don't tend to drop as much as expected. My asthma specialist consultant has informed me that 'no one needs admission with those peak flows' despite the fact I can have dodgy ABGs, even land in HDU and still be above 50% of my personal best. The ABGs don't always match the sats probe either.
yeah it seems there is an awful lot of concentration on the numbers and data -- peak flow, O2 sat, etc and not enough focus on what the patient is actually saying. If someone is saying they can't breathe then you should listen!
Although A&E can be terrible sometimes, they can also be better than others if they do pay attention to how I actually 'look' and sound along with the numbers. I've often had post-treatment comments along the lines of 'oh you really weren't well earlier, you're definitely looking better now' or 'wow I can definitely see the difference from when you first came'.
But absolutely none of this gets into the notes it seems - A&E in general is often like a black box. What does get into the record it seems is numbers and impressions from when the medics come, generally post-treatment, but not necessarily recorded as such. Then the discharge summary, ward notes etc usually based on that - and not put in context! I've several times had an ABG post-treatment which is ok, as you might expect when things have settled after nebs and mag, but it gets written down as if it were done when I first came in.
Then I get all sorts of crap about it. My consultant thinks I should just turn up to A&E so they can reassure me it isn't asthma and 'there's no judgement'. Yeah...he hasn't been scolded for daring to have a non-dreadful ABG, or basically told off for being a timewaster who's putting on breathing issues when anyone gets close.
That ABG was actually a common pattern for asthma, but misinterpreted as 'dysfunctional breathing' by someone who didn't know about asthma. Not all doctors seem able to read ABGs properly, and will jump to conclusions based on 2 numbers sometimes (I don't claim expertise but I am aware it's not as simple as they can make it sound). Plus usually I only get told it's not asthma at that point by people who have a very narrow view eg 'must wheeze/drop sats' so I don't tend to have a huge amount of faith in them; my consultant doesn't really believe that happens.
Although sadly some doctors won't always listen to nurses, I have often found nurses helpful in supporting what they see and passing that on so it isn't just me. I can find it hard to say I struggled with something because I feel like I'll be dismissed. I remember a nurse watching me try to walk in A&E, helping me get back to my bed when it was clear I wasn't really very good at it, and informing the doctor when he came back that I'd tried and not got very far. That doctor was really good but said he'd see how it went, and he wasn't there to see me walking. When the nurse told him how far I'd got (or rather hadn't) he immediately said 'right if you're still like that I'm referring you to medics, you can't go home like that'. Left to myself I'd probably try to downplay it; having a supportive nurse who gets it and can see when you struggle is so helpful.
Exactly right. Nurses are taught )or at least they were when I trained) that pain is what the patient says it is, not your interpretation of it. Same with breathing. If you are saying you can’t breathe it is because you can’t breathe.
Hi Emma, this is a really interesting topic for discussion as I am certain that air pollution has a great effect both my asthma and my dad’s heart condition.All through lock down when there were hardly any cars on the roads our breathing was perfect and strangely neither of us suffered from hay fever. Once lockdown was over the hay fever arrived with a vengeance and we both struggled with our breathing again. Considering that we live 50 miles apart, pollution must be a factor!
I would be really interested in the findings from your research.
Hi Vicky, that is an interesting theory and I think you might be onto something there! The lockdown provided a unique never before seen opportunity to test life with a little less pollution and it's fascinating that you and your dad both noticed a difference.
They need to stop cutting down trees. Especially oak trees. As they clean the air more. Oak furniture land needs closed down. I went to Thailand in December last year for a month and my asthma cleared right up. Stopped coughing up mucus n never used my inhaler once. Came back to the uk and as soon as I stepped off the plane I could tell the difference in our air. I was traveling home in the car and started coughing up crap. People blame cars for the air being bad, but when you think of it, cars produce carbon dioxide and that's what trees absorb, so to keep the air clean, save the trees from being destroyed. The red woods absorb the most carbon but they will be destroyed soon too. Ever heard of haarp? And that is the correct spelling. Lol. Look it up.
you have a valid point about the trees. and no I was not aware of HAARP, I am going to look into that, thanks.
I am allergic to pollen in the spring, ragweed in the fall, and pet dander in the winters. I developed the ragweed allergy when I was in the United States, but thankfully not so much back at home. I do not have to take regular medications, but only when there is a flare-up. I prefer not to take steroid laden puffs unless I am not able to breathe. Since last year, I also monitor pollen spread and AQI on sites like IQAir or climacell before I step out of my house. It helps me decide the precautions I need to take during the pollen season. If I see that conditions are bad, I do not go out unless I direly need to.
Some praise for allergy drops!!
Husband on frontlines, looking for others in similar situation
Some questions
I am new - looking for some advice please
Brittle asthmatic looking for advice, support and guidance.
