Hi everyone
Another repost from a couple years ago (and bought it up 8 months ago too apparently) so apologies if you’ve already read it 😉😂. But it’s another thing that those new to asthma may find helpful, and if anyone has anything they want to add just tag in! (I think this is the last for a while of my reposting of old posts 😅)
Asthma is a learning curve so here’s what I wish I had known from the beginning! In no particular order:
1. Asthma is different for everyone. Obvious now, but starting out to me asthma was asthma - a blue pump fixed it and a brown pump prevented it. Now I know all the different types and severity, and that everyone gets different symptoms! Not everyone has allergies, not everyone wheezes, not everyone finds that pred helps! Some people only need one pump, others need a mountain of drugs.
2. It’s normal to be tired when ill so take time to recover after attacks/hospitalisation. For a long time I would be in hospital one day and the next at uni/coaching. This usually led to a relapse within the week, or a very tired/emotional Emma! I know to take time out to recover after each attack so that it doesn’t happen again!
3. Don’t ‘wait it out’ - my asthma worsened whilst at uni. As a 20 year old, I would just see if it would calm down by itself, waiting months before seeking help even if I was over-relying on my ventolin. I now know the soon it’s treated the less likely it is to get severe and the quicker I’ll get over it!
4. Don’t be afraid to make a fuss - keep going back to the doctor if you’re not well. Just because they’ve seen you for 10mins does not mean they know what you’re going through. If you’re in hospital and don’t feel safe to go home, don’t let them send you home! Usually you know your body best and better 1 night more than 10 after another bad attack.
5. You can still have attacks whilst on steroids - I always thought this was a fix all, until my PF dropped 50% despite being on high steroids (and a lot of salbutamol) - went to my GP because I thought they could do something 😅 - they sent me straight to hospital
6. It’s important to take all your meds, but not all you meds may be working - don’t stop taking them without approval, but try to work out what is/isn’t working for you. I managed to stop 3 different drugs after we worked out they weren’t really helping that much!
7. Doctors can be wrong (even specialists) - They see you for a short amount of time and ‘judge’ you. I presented at my specialist hospital completely asymptomatic so I didn’t have asthma, they took me off 90% of my meds and sent me home. 1 week later massive infection and asthma attack, made to wait til specialist appt (2 months)to get my old meds back - panic and melt down when I had my appt and admitted for 5 days hydrocortisone therapy - never has so many apologies from docs and nurses!
8. Different hospitals have different criteria for ITU or admission. My old hospital had a tiny itu and no HDU, so to get a bed there required intubation. My new hospitals itu is bigger so a life-threatening attack with lingering symptoms (or borderline intubation) sends you there (or to HDU). Now I struggle to answer ‘have you ever been to ITU?’ - not at my old one, but under the new hospital I would have been several times! Equally they seem to have different discharge criteria’s too, my old hosp would send me home as soon as I was in yellow zone, my new new hosp (have moved about a little in the last 2 years 😅) will not send me home til I’m maintaining one green. Now when I’m home I actually am good to be there, whereas before I’d still be struggling and often end up bouncing back very quickly.
9. You don’t have to let asthma control your life - you may have severe asthma and feel like your life is on hold, or you may be going through a period with really poor control, but remember there is almost always a treatment that will help (biologicals/bronchothermoplasty etc). Even if you are an unfortunate one who is low T2, or who can’t access the biologics for various reasons, don’t be afraid to go out with friends if it means only having ‘mild’ issues, don’t miss social events you’ve been looking forward too unless you really have too. Asthma sucks no doubt and can really take over your life when you’re uncontrolled, but there’s little point to life if you can’t find enjoyment somewhere. Work and play when you can, rest when you need!
10. Peak flows are personal. Yes there’s an average, but if your best is higher it doesn’t mean you don’t have asthma, and if your best is lower it doesn’t mean you’re unfit or very asthmatic. They’re a lot of factors affecting what your best may be. Just work it out and look up your red/yellow boundaries - ignore everyone else’s!
11. Asthma plans are important but can go out of date - A change of meds - new plan, a new best PF - new plan, a change in control - new plan. Always remember to update it when needed and give/put in relevant places (school/work/fridge etc)
12. Colouring in your PF meter is helpful - when I’m ill I can’t do maths so PF can be interesting esp when I have the shakes. Easy solution - colour in your PF meter (green, yellow, red, black) so when you blow the zone is easy to see as the pointer is ‘in’ the zone. It looks Rasta but every doc whose ever seen mine loves it, as it also makes life easier for them! (here’s how I do it - healthunlocked.com/asthmauk... )
13. An ‘emergency’ sheet is essiential in attacks - I have 2 double sided sheets. It shows my personal details, diagnosis, meds, allergies, past medical history, steroid/antibiotic history, hospital/a&e trip history, my consultant info and when I last saw each, and what brought me in that day (when it started, what I’ve done treatment wise, who I’ve seen/spoken too, PF/ventolin measures and times, symptoms). This way if I can’t talk they have everything they need and I don’t have to repeat things or remember all the drugs that I’m on!
14. Home nebulisers are severely frowned upon in the UK but a godsend to anyone with severe asthma who is constantly living in a hospital - yes I have one, no my consultant doesn’t really like it! I know there’s the potential for abuse to avoid hospital so come up with ‘rules’ - mine are 1 neb contact my Asthma nurse +/- GP, 2+ nebs go to hospital. Also don’t let the hospital abuse it! I’m often sent home early because I have one at home, or I’m told to self-medicate on it my with no time restrictions - I once lasted 6 weeks of 2hrly nebs and 40mg pred before I gave up and went back to the hospital (they had told me they couldn’t do anything for me 🙄). If abused home nebs can be dangerous, so if you have one be firm about the rules and please follow them religiously!
15. Talking to people who understand helps - I went 2-3 years of multiple severe attacks before I found this site. I felt so alone and no matter what I said my friends and family didn’t always fully understand. Even the medics and asthma nurses only had a vague idea. Now there’s people on here that I can talk to in similar situations to me, some are better off, some are worse - but they all understand and can support me at my worse or give me advice/prompting when I’m trying to avoid hospital!
16. Just because you’re severe doesn’t mean you always have life threatening attacks, or if you’re mild doesn’t mean you can’t! - an attack is an attack, anyone can die from asthma if you don’t get the right treatment at the right time.
17. An exacerbation is the same as an attack, however most people believe it indicates a longer period of poor control and maybe a worsening of your asthma, whilst attacks mean sudden severe acute issues... medically speaking they are used interchangeably. My first few attacks I didn’t identify as such - I used my ventolin more and more but that was just because my asthma was slightly worse... I didn’t need hospital did I?! If it’s caused by a cold than I’m just time wasting getting emergency treatment- it’s a cold. I always reasoned it off, and didn’t recognise my lack of control. At the time I didn’t have an asthma plan and had never done a peak flow either! So if you’re using your reliever more than 3 times a week, it’s a sign that something’s up and you need to tell someone!
18. There are a lot of ‘undiagnosed’ asthmatics - I got pumps at 15, but didn’t get diagnosed officially until I was 22/23 and need referral for biological treatment- this delayed referral for 3 more months!
19. Asthma can be more scary for others than for yourself - I’m a calm soul, if I don’t think I’m literally about to die I don’t worry about it (and usually by that point I hit the ‘unnatural’ calm or I’m finding things hysterically funny 😅). If I’m in resus, why should I panic?, if things go bad they have meds there to help me. A lift to the ED is faster than getting the ambulance, so my PF is less than 50% I don’t feel too bad so why make a big fuss. Anyone with me tho freaks out. Family, friends, coworkers, bosses, doctors! Always being told off for making my own way in! Now I’m that much further from my hospital (45-50mins by ambo) I’m a lot more aware of the potential so am more proactive even when I personally don’t think it’s that bad... if others think it is, I listen.
20. The most annoying phase is ‘calm down and take deep breaths’ - as previously stated I usually am calm, but telling anyone to calm down is only gonna stress them out more! And I can’t take deep breaths, I’M HAVING AN ASTHMA ATTACK AND MY LUNGS AREN’T WORKING PROPERLY! 😅😂😂
21. Good sats does not mean no asthma attack - Just because your sats haven’t changed doesn’t mean you’re only having a mild attack. Even doctors get confused about this 🤦♀️. I’ve known someone to be intubated with sats of 96, but her CO2 retention was near fatal!
22. Pred head is a thing - steroids and the love hate relationship asthmatics have with them! Not only do you have to worry about long term effects, but also the short term effect on your mood! I get moody, teary or angry for no reason. I have cried over hot chocolate, and yelled over being asked if I’m ok. Explaining this to family and friends tho helps them understand that usually you don’t mean what your mood is suggesting - come back in 5 mins and I’ll be back to normal! And ugh to the ‘I’m shattered but *bing no sleep for you!*’ affect too! And the clumsiest and brain fog and and and... 😅😂
23. It’s ok to cry - don’t bottle it up, don’t be ashamed. You’re in a difficult situation, pumped full of drugs that effect your mood, in hospital not sleeping properly, and possibly nearly died, maybe you’ve just realised your now classed as disabled, maybe you haven’t slept through the night for a couple of months. Physically and mentally a lot has happened in a short amount of time and you have to adapt to it. So cry and let it out!
24. Not everything is caused by asthma, but everything is blamed on it! - tachycardia - it’s the asthma drugs, high blood pressure - it’s your asthma, palpation/shakes - too much salbutamol, reflux - it’s from the steroids, migraines - probably from the drugs/stress, easy bruising - it’s the pred... on and on and on. Very little gets followed up as a different issue, so you’re just treated for the symptoms not knowing the true cause - your asthma or something else? I’ve been at sinus tacky for years (minus the occasional drop) it’s always blamed on my drugs and never followed up. Sometime you need to fight for more investigation
25. Your PF doesn’t have to drop to be having an attack - you can be having issues even if your PF doesn’t suggest so. This is one of the most difficult types of attack as doctors just wont believe you unless they know you. Best thing to do if this is your ‘normal’ to is get a letter explaining from your consultant and hand it over if you ever need something more!
26. Spacers are important - not only do they make you more efficient at picking up the drug, but they can also reduce some off the side effects. Always getting oral thrush - try using a spacer! Get very shaky from your blue pump? - spacer! Preventer make you gag? - spacer! Also don’t forget they should be replaced annually!
27. Often the original meds’ work better than the generics - they’re more expensive so docs like to try you on generics but I get a highly different response from ventolin than I do from any alternative! If you do cope well on the generic version then yay! But if you don’t just contact your GP and they’ll switch you back. Often it is a cost saving exercise that they’ve switched you, and for many it’s fine. If it’s not for you then you just need to tell them!
28. CFC does make a difference even if they say it doesn’t - it’s less environmentally friendly but it can double how much my improvement lasts! If you want to be green and can cope with the mechanism, try asking about dry powder versions of your inhalers. Some people do better with puffers (typical MDIs) others suckers (DPIs) and some don’t have a preference, but if you’re environmentally conscious you can either try switching or using the inhaler recycling program if you can! (More info on inhaler recycling; healthunlocked.com/asthmauk... )
29. Exercise is important (as and when you can) - it’s always difficult as a severe uncontrolled asthmatic to work out when to exercise and how much to do... I find I push the limit too far if I’m well but do nothing if I’m ill - I’m still trying big to work out a balance. Alternatively take up singing (in the shower if your ‘bad’) or a musical instrument - at least then you’re helping your lungs stay fit, even if your body gets fat!
30. Find the right drugs for you - keep going back until you feel your best, if you struggle with MDIs (aerosols) then ask to try DPIs (powders) - it took me a year of telling them MDIs made me cough and feel sick before they gave me dry powder inhalers - I didn’t even know they were an option at the time! Tell them if the side effects are too bad for you to deal with, even if it’s helping you breathe - there are usually alternative brands that you can try which may not give you any issues!
31. Everyone will offer you a different ‘solution’ for your asthma - ‘have you tried...’ is a commonly heard phrase to anyone who’s asthma is uncontrolled. These are usually suggested by non-asthmatics who have ‘read an article’. Do your own research. A lot of these suggestions can be dangerous if the ‘wrong’ asthmatic were to do them, so read the article and judge for yourself, post it on here to get others opinions... some may have tried it, others may be able to spot flaws/issues you haven’t, or give you a pro you hadn’t thought of. As yet there is no cure for asthma so take it all with a pinch of salt.
32. A bad doc will diagnose an asthma issue as anxiety... or will spot the cause but not treat the effect - I’ve had a few occasions when life threatening attacks (according to BTS guidelines) were diagnosed as ‘just’ anxiety. Equally the number of times my asthmas flared due to an infection, and the hosp thinks that just giving me ABs will cure it is unreal... no matter the reason, once your asthma is flaring it needs treatment, not ostriching! I’m guilty of this myself ‘it’s flared cause of x so don’t really need to do anything’... it’s annoying but it would be hypocrital if me to just blame the medics for this 😅
33. Nurses/HCAs can cheat obs and it’s potentially very dangerous - if you’ve ever been in hosp you’ve probably experienced this (maybe without realising). They do obs to get a national early warning score (NEWS) and each ‘items score’ is worth a number of points (ie sats 96+ = 0, 95-= 1, 93-= 2, 91-=3) You get a total number and if you go about a certain score they have to do something (I think a total of 6+ means they have to get a doc review and 9+ is crit care review... 3- can be seen as ok for discharge in some hosps... not 100% sure on the boundaries). Theoretically this is a great thing to do, however it’s rarely done appropriately. I’ve been 5 mins from an attack and been recorded as rr 18 (was probs high 20s). My HR hovering by around 130 but when first attached it showed 101 (from prev patient) so that’s the number chosen. My sats are 92 so told to ‘deep breathe’ to get the number up to 94/95 momentarily for the record... I’m not going to spend my time deep breathing so my sats are 92 thank you very much. On an o2 neb when obs are done, but recorded as being on air... Because people can and do cheat, things aren’t spotted early, then it’s a ‘shock’ when you deteriorate as your NEWS hadn’t warned them. I have have objectively scored 10+ before but it was actually recorded as 5, so no review done at all... (it was a very bad night). If you’re in hosp and you notice the cheating do your best to make them do it properly... if you can explain why (you wouldn’t believe how rare it is to get an accurate rr even on a resp ward 🤦♀️), if not be subtle! ‘Hmmm... I got a rr of x what did you get? My Hrs around 120 and I haven’t had any Salb... that’s a bit concerning as I know that indicates an issue will be soon’ etc etc 😅. Bizarrely I have found that this has actually improved during the pandemic. It’s almost as if people are suddenly realising why RR (and NEWS in general) is so important 🤦♀️. I’m really hoping this practice will continue!!!
34. Asthma is a variable and intermittent disease - I know it seems like common sense but lots of people forget it. How many people have had issues overnight but when they’ve seen their GP the next day ‘well your ok now’... others have a period of really struggling, are then referred but by the time the appt comes up (3+ months later in most cases) the flares finally calmed (usually due to weather changes) so the feel a fool for making a fuss. Highlight this fact to the doc. If you’ve got a Cons appt write down what happened, any concerns, and maybe that you think your asthma was seasonal so what to do if it reoccurs the next year etc etc.
35. It is not normal to have symptoms! - I feel like this is a hole that lots of us fall down. We live with a level of issue not realising that we should have none. A well controlled asthmatic has no symptoms and can live life like everyone else just with their meds in the morning/evening and their emergency meds for just in case! Not sleeping cause of breathing issues, coughing all the time, always SoB walking, constantly wheezy, reliever isn’t part of your daily life? These are all signs that you’re possibly (probably) not fully controlled so keep return until you are. If the GP can’t get on top, asked to see a resp con, if they can’t sort it ask to be referred to a resp specialist hospital. Ideally everyone can be controlled, and those who can’t need the extra support they can get from the specialists!
Anyway, I hope this helps someone!
If you’re concerned or need advice The AUK helpline nurses are great and can be reached on 0300 2225800 M-F 9-5. Alternatively their WhatsApp service is 07378 606728.
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