I got a letter through the mail yesterday and apparently things are back to square one - debating whether this crap is asthma or not when I'm supposedly severely asthmatic.
why would I have been told its asthma if it may not even be?!
why do I respond to asthma medication if its not? surely if it wasn't asthma my inhalers/nebs in hospital wouldnt work? why does pred help?
why now I'm on the right medication has my peak flow gone up over 200?
why have I had about 30 emergency admissions with my breathing if its not?!
why do I have an asthma action plan if its not?
if its not asthma, then why have I been mostly on inhalers for the last 14/15 years?!?
what am I supposed to do now if they're debating whether it is or not?!? leave myself to go blue?!
I've had enough. if they're debating whether it is asthma or not, why am I bothering still taking my inhalers and tablets?!?
Firstly I would just like to give you a massive virtual hug and say I know exactly where you are coming from!!
What ever you do the DO NOT stop taking your medications no matter how you feel!!
One question in return though, is this letter coming from your local hospital if so, have you thought about taking it to the next step and going to one of the regional hospitals that dedicate themselves to difficult/severe/brittle asthma. This way, more tests can be done to determine what really is going on.
Sadly with asthma, a lot of the time when it is difficult to control, there generally is other things going on that can mimic asthma or can cause your asthma to be triggered and you not even know of that cause.
Please don't feel disheartened. Unfortunately, a lot of us go through this stage and we all don't see the point, but just remember, you know the medications that you take are working (or to some extend at least. your life seems to have improved a little (noticing your peak flow had gone up) which is a significant bonus!!
Keep smiling spud, and remember, there are always other options to be explored if you don't like what your local hospital are saying!!
xxx
Agree with everything Charlie said! And the hugs.
It's horrible dealing with this stage - bad enough dealing with the symptoms without worrying someone will take away what does help.
What exactly did the letter say - are they doing more tests to find out what else might be going on? I would defo agree keep taking your medications (I kept on with mine in this stage and this was ok with the consultant etc, once I'd actually found ones which worked, and my GP was also supportive re me taking them which helped. Is your GP helpful?).
I would agree with Charlie that if your local hospital is not being helpful then you should ask to be referred elsewhere. I asked this because my local consultant was just saying it was in my head and nothing was wrong, so I didn't see any point in going back to her when my GP wanted to refer me again - she would never have been able to look at it with a fresh perspective and had apparently categorised me as 'anxious'. Initially I just said 'please just recommend somewhere, anywhere else I can get a fresh perspective' so I went to a 'local' in London (I go there a fair bit anyway so it made sense) and they then decided that they weren't sure either and referred me to a specialist place.
I know how incredibly discouraging this stage is but please don't give up - I got there in the end and as Charlie says, if they are willing to be open-minded then it can be good to discover what else is going on which might be interacting with asthma. If they're not and are just saying there isn't a problem when there clearly is, then you have rights and don't have to go back to your local if they aren't helping.
If you need practical advice the AUK nurses were very helpful for me at this stage - they told me it was completely reasonable not to want to see my local consultant again if I hadn't got anywhere and felt I couldn't communicate with her, and told me what my rights were and what to ask my GP.
it was my local hospital, yeah.. I didn't even see my cons in my last appointment, I saw some other guy and had a few bits and bobs done with the asthma nurse. the asthma nurse said my nitric oxide levels were a bit high (43ppb) but nothing overly concerning at the time.
they've pretty much said its down to reflux which I know for a fact it isn't, I get reflux severely at times which causes me to throw up from it - whenever I've thrown up, its not done anything to my breathing, at the very most, its made me clear my throat maybe twice at the most.
I can tell the difference between my um, throaty sort of cough and my chesty cough. I have no sore throat or anything from coughing which I get if it is throaty, its my back, chest, shoulders and upper abdo which hurt badly which I get from the harsh coughing.
my gp is saying she's gonna write to the clinic and tell them (the clinic) to discharge me because I won't take the dose of omeprazole they want me to take - I don't wanna take more tablets than I need to. I've taken gaviscon advance when I've been coughing, just to make a point that it isn't reflux causing it. I don't know what's happening with it, the clinic have said they want to see me back in 3 months, my gp can't overrule what they say, can she?
Hmm it doesn't sound like communication is going well here.
I get that they want you to take the medication if you have severe reflux issues (and that can as you obviously know have a big effect on asthma so it might still be part of the problem, if not the whole, and as you also know from experiencing it is not a good thing to have anyway and needs sorting). However, it seems like they shouldn't fixate on one thing to the exclusion of considering anything else which might be going on, even if they need to take the reflux into account - there still might be other problems.
I also don't think your GP's attitude is very helpful. In fact, it seems rather hostile - instead of asking you why you don't take the omeprazole and giving you a proper explanation re why they think you should, and discussing other possible ways to manage the reflux, she seems to be saying that if you won't take it that's it and they won't help you? That was my impression at least, and I don't think it's a very helpful way to handle things - in fact, it seems unnecessarily aggressive. Even if omeprazole is realistically the best option, treating you like a naughty child who won't take your pills is not really going to help anyone; they need to discuss it properly.
Have you found your GP helpful in other respects? Because I would at this point definitely be thinking about seeing another one (should be possible usually to see another one in the same surgery). I would have thought if the clinic wants to see you again she can't overrule it, but I'm not sure. Having a supportive GP is definitely a help though and you don't want to be worrying that she's going to get you discharged, or just tell you off instead of trying to help.
i totally get the whole ""well whats the point in taking my meds then"" thing - i go through this emotion occasinaally. Or if im discharged from A&E still really struggling (the other night i had to get a receptionist to ring a taxi for me as i physically couldnt speak soon but the consultant couldnt hear a wheeze - not surprising given i wasnt moving much air at all so said i should just go home!!! shocking really) i think - well, they clearly think i'm fine, so no point taking any meds. I know its stupid at the time but not being able to breathe is really scary and being scared makes us make silly decisions!
just a thought. Unless the omzoparole (not sure how to spell it) is going to cause significant side effects might it be worth taking it anyway just to make them consider something else (if nothing else it will stop you getting heart burn!) I have this issue with my local cons, i am taking a sub-theraputic dose of uniphylinne (a drug which frankly hasnt got the best evidence for it anyway) and so its not going to help my breathing, but could still be contributing to my tachycardia! very frustrating, but they wont listen to reason. So i take it as it means that i have people 'on my side' if im admitted through an emergency to my local. and when i get seen by my consultant at home then he will almost certainly stop/increase it, but that wont have been my decision, so i cannot be blamed for it!
Also, i know nursefurby will be better able to talk about this, but i believe she has said that lots of the patients at Papworth have reflux, and many of these people have silent reflux (so with no symptoms) and this cancause things like aspiration pneumonia (possibly key given that you are cough variant!) I dont know if you can have refux which only causes symptoms sometimes, but might it be worth trying the meds to see if they at least reduce some of the symptoms?
plus, even if the reflux only makes you cough a little bit, i know from physio that coughing irritates the airways, and this leads to a cycle of increasing inflammation, so anything you can do to cough less is going to make your lungs happier (unless youre coughing stuff up) and so maybe being more in control of your refux issues will help? just a thought!
I owud consider whether your local consultant isnt the right one for you - could you be reffered on or see a different cons in the same hosp. I cant remember whether you have many emergency admissions - if you do it can be nice to have someone in your local hosp who is familiar with you, so you might want to keep that in mind when you're deciding! sending huge hugs - i know it must be so frustrating!
Just a thought with regards to reflux. I knew i was getting small amounts but when a i had a 24 hour tape done, it turned out i had over 56 episodes, over 20 of which were silent and i didnt know anything about them. My new specialist consultant then looked closely at my upper airways through a camera and found that all this daily reflux (despite medication) had infact burnt all my upper airways causing them to be stupidly sensitive. Sadly theres nothing that can b done to fix the burns but he said that it expalains why i cough and trigger so easily with smokes, air temperature changes, aerosoles and all things similar to this. Im not of course saying this can be the same for you, but just remember to bare in mind the reflux is a little more than heart burn and vommiting (which of course im sorry to heal and massively sympathise) i find that sometimes when having an attack. With my initial rescue treatment, i also add in 10ml gaviscon just incase it is the reflux adding to things. Sorry if what ive said is totally irrelivant and un helpful to the max. I really hope you can get things sorted soon. But i would definately recommeb being refered to the next stage consultant. Not sure where in the country u r from but there is birmingham (i go herr) london, southampton (i think) i here manchester is very good also. Worth a shot, got nothing to loose!!
Xxx
sorry I haven't replied sooner, I've been unwell with other things.
have started back on the omeprazole and hasn't seemed to do a whole lot in the 6 days I've been taking it again. I saw a gp said and they said that its in my head and therefore my inhalers wouldn't do anything, so being the idiot I am, decided to try wait out a coughing fit, took gaviscon to see if it was reflux related, nothing had changed, an hour later, had thrown up 4 times and countless retching, very near to throwing up, I started coming out with a weird noise. I'm not sure if it'd be considered wheezing, it sounded like a seal or something, took my inhalers and within about half an hour, it'd fully settled down. hmm.
if its allowed, I recorded the weird noise for when I next see my cons, I'll upload it to youtube if someone could let me know if its some weird form of wheezing or not? theres nothing graphic to it, just the weird noise I dunno what it is.
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