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 a blue 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!
9. You don’t have to let asthma control your life - you have severe asthma, but their is almost always a treatment that will help (biologicals etc). Don’t be afraid to go out with friends if having mild issues, don’t miss social events you’ve been looking forward too unless you really have too. Work 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!
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 frowned upon but a godsend - yes I have one, no my consultant doesn’t like it! I know there’s the potential for abuse to avoid hospital so come up with ‘rules’ - mine are 1 neb see my 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 🙄).
15. Taking 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 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
17. An exacerbation is the same as an attack, however usually indicates poor control and a worsening of your asthma. 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!
18. There are a lot of ‘undiagnosed’ asthmatics - I got pumps at 13, 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. If I’m in resus, why should I panic?, if things go bad they have meds there to help me. I 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!
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 🤦♀️
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!
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. I can be dizzy and have palpations even when my asthmas good and I’m in minimal drugs... do I just ignore it? 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!
27. 9x/10 orginginal 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!
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!
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!
A nice round 30 points (until I think of something else 😅)