What I wish I had asked (when first dia... - Living with Asthma

Living with Asthma

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What I wish I had asked (when first diagnosed)

EmmaF91 profile image
5 Replies

Hi everyone

I’ve recently read an article about shared appts with doctors, and whilst it’s not something I would like personally, it does bring up an interesting point - very few people know what to ask when they’re first diagnosed (with asthma)! I know I never asked questions, mainly because at the time I couldn’t think of any and after the appt I would forget them! I thought I’d make (another 😉😅) list, and people can tag in any questions I forget or don’t think of!

1. Is it really asthma? - a lot of people are ‘asthmatic’ but aren’t officially diagnosed via lung function tests/spirometer etc - it took me 7 years before I ever did a peak flow and 8 or 9 years before my official diagnosis via LFT by which time I was severe and the hospital was involved

2. What type of asthma do I have? - day to day it won’t change much, but knowing what type you have may help you identify and remove triggers or at least how to manage them! If it’s exercise-induced then you need ‘preventative’ ventolin before you start, if it’s viral it may only be there when you’re ill so that when you need to look for issues etc etc etc

3.What are my triggers? - yes this is usually a ‘trial and error’ thing, but if you’ve no idea it can be difficult to identify them - a lot of attacks are caused by multiple triggers at the same time so what was the cause? - if you’re an atopic/allergic type then maybe ask about an allergy test (either blood or skin prick) it may show something you haven’t yet connected - I didn’t know I was allergic to dogs as the only dog I really knew and visited a lot was my brothers, who also has a cat (a known trigger) - there goes my puppy snuggles with friends doggos 😢

4. What should I do if I notice issues? - yes you should have an asthma plan, but if you don’t this may prompt them into getting one. It’ll also reinforce when to see the doc and when to go to hospital

5. Is there a limit to how much ventolin I can use? - the answer is ‘no, not really’ but having a ‘limit’ given by the GP will stop you over medicating without seeking help. I was never give a limit and know I abuse my ventolin a lot, if it was capped to a certain number a day/week I’d definitely see my doc earlier!

6. What should I do if I go into yellow at the weekend? - Sod’s law states you’ll be fine until the GP isn’t available, but you’re not bad enough for hospital... should you wait it out til Monday and get an emergency appt, or should you go to the OOH service? Ask and see what your plan will be! - not sure how this works in the US, but if your family doc only works weekdays it applies!

7. What should I do if I’m in yellow zone, despite being on/just finishing the yellow regime (pred/vent/SMART etc)? - it’s always a problem that trips us up - being borderline! What if you’re at the bottom end of yellow, bouncing in and out of red? Do you go to red zone treatment, do you stay in yellow for longer or do you hope you I’ll improve by itself? Ask them and see - if you’re in yellow then you should have already seen them!

8. How long do the meds take to work/when should I see an improvement? - some people expect immediate improvement from ventolin (it takes 10 or so mins), others expect steroids to start helping the same day so get worried if they don’t - it’s a question worth asking as to how long it’ll take to feel better and what to do if you hit that timezone with no improvement! Similarly when trying new meds - what’s the time limit before saying ‘no it’s not working!’

9. What if I can’t get an appt? - we all know the state of the NHS at the moment - getting normal appts can be difficult, let alone emergency! If this is the case at your surgery, ask them what they expect you to do - do you start the plan by yourself and ring the next day hoping for an appt then or will you get a same-day return phone call with a doc etc etc - each practice will have a different system so just double check it! Again not sure how relevant this is in America but the difficulty in getting appts may be the same 🤷‍♀️

10. What should I do if my ventolin runs out unexpectedly/how to tell if it’s running low? What if I’m out and need my pump but have forgotten it? - it happens to us all - you’re at home or out, need your pump and it’s empty! Will they let you order a spare for ‘the just in case’, or will they do an over the phone prescription you can pick up that day? What if it’s the weekend? You don’t need hospital, so where do you get help? Can you take your repeat to a pharmacy and pick up an ‘emergency’ one from them? etc etc. Hopefully this won’t apply to you Americans- if I’m correct you can just buy yours over the counter - I’m not sure tho so left it in!

11. What symptoms should I look for, and how bad should they be to get help? - a lot of docs/patients rely on peak flow as to when to seek help but what if you’re feeling bad and it’s ok? My first attack, I didn’t know what it was! I had never done a PF but my lungs felt like they were wrapped in cling film, I was very short of breath and I couldn’t sleep or eat or talk or walk - I thought I had a chest infection but no it was asthma!

12. What should I do if I’m ill? - if I’ve a cold/virus do I need to see the doc? Should this appt wait until my asthma complains? Should I pre-emptively up my meds? - depending on you and your asthma type these answers may be different so worth asking!

13. Do I need to take any special precautions/changes in my life? - an answer you hope will be no but some people may need to change things up a bit. Maybe you’ll have to inform airlines if you’re planning on trips aboard, maybe you’ve got occupational asthma and things will need to change at work, maybe you need to do nothing at all!- it’s worth just double checking that you’re doing all you can to help keep your asthma calm!

I hope that helps those new to the process, and please feel free to tag extra questions you asked (or wished you had!) in the comments below!

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EmmaF91
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5 Replies
pmh18623 profile image
pmh18623

Great list!

EmmaF91 profile image
EmmaF91 in reply topmh18623

Thanks

Carakraft profile image
Carakraft

What a fantastic list of things to share EmmaF91!

Lists are so important for me when I am at my appointment- there is so much going on that I would forget half the things I wanted to ask my doctor and their staff. I actually have my list on my phone- it makes it easier for me!

EmmaF91 profile image
EmmaF91 in reply toCarakraft

Yes I love a list - I often write them up whilst in the waiting room, cause I forget when I’m at home 😅

Carakraft profile image
Carakraft in reply toEmmaF91

Even better idea!!

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