I have an appt with my consultant tomorrow. i am suddenly feeling very very anxious and actually quite tearful about going. I have seen this consultant before, and I dont really like seeing him as he is very dismissive and has commented on my weight and stuff which im quite sensitive about atm. No-one is gonna be able to go with me, that was my first thought. So I will be all worried and stuff most of the day tomorrow!
I think my worry is that he will just say ""lets see how things go and you can come back in a few months"" and tbh I really can't face that right now. I am starting to feel really rubbish as my pred dose is getting lower, not so much that i cant manage for a few days, but deffo cant manage long term. The thing is if i get there and my chest sounds clear then I'm not sure if he's just gonna say to stop the pred and carry on....and I know for a fact that that will end up in A&E.
My A&E is not very good. They will discharge me before my PF is 50%, and I cant even talk in sentences when they let me go which leaves me in a really tough position as i feel like i cant go back unless i continue to get worse, but there is nowhere i can go for help as OOH, GP, NHS direct, 111 etc would all just ring 999! So I really really want to get to a point where i dont ever have to go there! and i dont think my consultant will understand!
I guess Im just wondering what you guys would ask, and talk about and stuff at an appt! and the sorts of things that you have been given at these appts! thanks
hugs to all! x
43 Replies
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Hugs. I do completely understand that pre-appt nerves thing! I get it even when seeing consultants who have been good before as I am never quite sure what they're going to say, so it must be horrible when you're seeing someone you don't really like or trust who hasn't helped you so far.
I think you said your GP was good and you see them a lot? If you don't get anywhere tomorrow (and it's always possible you might see someone else in the clinic? In which case you might get further and can ask to see them again next time?) then perhaps you could make an appt for a time when you're NOT feeling awful and they're about to send you to A&E, and discuss all this with them.
The other thing, and it sounds like your appt is not till the afternoon (?) so you could do this in the morning, is to ring the AUK helpline. I have found them really helpful not just for listening to me rambling and providing medical advice, but also for offering practical advice about options - they could also maybe suggest things you could say/ask in your appt. They completely understood when I said I didn't want to see my local cons again because I really hadn't got anywhere with her and didn't feel the communication was good, said that that was a valid concern when I'd been feeling I should just be glad to be seeing someone, and told me what my options were (more than I thought, it turned out).
I really hope it goes better than you think, but you probably do have other options even if it doesn't seem like it right now.
Hi Soph,
I totally empathise as i had a cons who never seemed bothered about the impact my daily symptoms and A&E visits were having on my life, he just seemed to look at his tests and results and dismiss me.
I got nowhere with him and in the end asked my GP to refer me to see someone else.
I am soooo glad i did, its like night and day. My current cons actually wants to help, has tried lots of things and we have now got to the point where I've been referred to the Royal Brompton.
Don't give up and accept this cavalier treatment! You deserve to have someone who wants to help you and doesn't think its ok to live with these symptoms.
I can relate to how you feel, but not for myself for Thomas. I have Thomas's appointment tomorrow and feel very nervous already. I am concerned that he isn't much better and still has a lot of downs as well as some good days I don't know what more they can do for him considering the amount of meds he's already on and he's not even 3. The effect its having on the whole family is massive and it concerns me a lot how its affecting my daughter. My sons consultant is good but that doesn't stop how I feel with the nervousness to the point of feeling sick and the tears. Try to be strong and if you are not happy tell them so.
jenny p-good luck for you tomorrow too, glad you have a good cons, hope you can get some answers! I'm hoping that once i've had a decent nights sleep i'll be in more of a position to be strong and fight my corner a bit more (although it is stupid that it should be a battle at all!) How is your daughter coping now? Have you had the chance to give her a bit of one-to-one time for a huuuge cuddle?
my GP is good - although away this week - however a lot of what they do seems to be getting me to survive the gaps between hospital visits/cons visits as they are at a bit of a loss with me. I think if i have a bad time at clinic tomorrow then i might try to get a different consultant (there is one who has delt with me as an emergency patient who deffo took me seriously - he really stood up to my repeated protests that i was fine to go home - frustrating at the time, yes, but probably a safer option in the long term) does anyone know if consultants can make recommendations to A&E staff about how you are treated in A&E (and can dr in A&E overrule them?)
I have rung the AUK helpline before - but its expensive to ring from a mobile and while i'm away at uni i dont have a landline and sadly pred muchies are too expensive for me to spend money on phonecalls! sigh! if i have issues though i'll ring next time i'm home to talk through options!
Does anyone who has a HC2 form know if you are allowed to use a taxi? I'm not doing brilliantly walking around and as much as i want my lungs to behave as badly as usual for the consultant i do want to survive the journey (if nothing else than because i get told off if i self present to A&E - thats what i used to try to do so i wasnt 'wasting' an ambulance! lol!) so taxi would be much easier - but like i say - im a student and have no money!
thanks for the kind words guys - glad to know its not just me being weird and stressing over nothing! x
She's had plenty of attention but is still playing up. She's off out with my auntie tomorrow so hopefully she will enjoy that as it will just be the two of them. Then we are away for the weekend so hopefully she will enjoy that. Just have to hope and keep everything crossed that Thomas will be ok. Ridiculous when you have to look up the nearest hospital for a weekend away but if I didn't know what's what I'd panic.
It is ridiculous you have to fit your corner and I know it well for ages I was made to feel like a complete hypercondriac to the point I almost gave up fighting I'm glad I didn't now! I hope I can be strong tomorrow but it is hard to remain strong when you are being told something you don't agree with or don't want to hear. It is awful to say but a lot of the time I want Thomas to be bad for his appointments so they can see what I do!
You aren't stressing over nothing at all!
I think definitely ask for another consultant if you can. And even if the GP doesn't know how to deal with you him/herself medically, they will know the system and should be able to advise you on how you can get the best help - I would have thought that's part of their job, knowing how and where to refer. I know mine gave me some help with that as he understood my issues with the local cons (he wasn't too happy with what they said either).
I don't have a landline either (fancy Virgin broadband, never used landline much) but do you have a phonebox anywhere near? Perhaps best not in the cold with stroppy lungs, unless there's an old one in halls somewhere. Alternatively, if you have free minutes and can spare them, you can call the main AUK number which is not 0800 and ask to be put through to the landline, or just google 'calling 0800 from a mobile' and there should be some advice.
Just want to say good luck to you both Usually the thought of going is much worse than once you're actually there. I would second what everyone else has said, go in knowing what you want to get out of the appt and don't be afraid to make it clear if you aren't happy.
I'm also nervous about an appt tomorrow (are we all off somewhere?!) though not asthma- I'm finally going to talk to someone about my eating issues (forced by my flatmate who thinks I have an eating disorder, not sure she's totally right, but going will keep her quiet!)
I'm also nervous about an appt tomorrow (are we all off somewhere?!) though not asthma- I'm finally going to talk to someone about my eating issues (forced by my flatmate who thinks I have an eating disorder, not sure she's totally right, but going will keep her quiet!)
Kudos for you.
I am really glad to hear that you are doing this. Your flatmate's concerns don't necessarily mean that you actually have an eating disorder, but I'm very glad you are listening to feedback from those that know you and being courageous and responsible enough to get professional feedback.
I hope the appointment goes well; that you get wise advice; and that you feel heard and understood both in terms of why you do and don't think your flatmate might be right.
Its perfectly normal to get worried about a cons appt. Especially one who wasnt very helpful or kind last time!
Once you have found a good cons you could ask for him to write an official A&E plan for you that you carry with you and present at A&E? Not sure of this needz to be ok with emergency dep first? But it can be done.
Huge hugs from me.
Rose xxx
I can't help with the consultants etc but to find an alternative number go to
search for asthma uk and you get a couple of results
Looks particularly good:
Asthma UK Adviceline 0845 701 0203 / 020 7786 4900 / Switchboard will answer: ask to be put through to Adviceline.
I've never used it but it should be worth a try calling the 020 number cos that should be included in landline minutes
rachel93-good luck tomorrow to you too we do all seem to have lots of appts! I have my consultant tomorrow, physio wednesday and my dyslexia assessment on thursday lol! I'm gonna be bored of appointments by the end of the week!
thanks for the alternative number! I'll give them a ring between lectures tomorrow
rose-i was wondering if they did that! that'd be much better as frankly by the time i need A&E i'm usually beyond what salbutamol can do (or i'd have sorted it with a zillion puffs of my vento) so time spent JUST on salbutamol nebs tends to be a waste of my energy, although i guess its tricky as very occasionally just that will work! sigh! why cant asthma just have one simple thing it does! deffo need to wait for a new consultant to do that though as my current one is not a supporter of magnesium (he says there is no evidence for it at all and he could easily never give it) and yet this is the thing that seems to work for me almost every time so i dont want an A&E plan that doesnt include that! hehehe! I also know he would never have me admitted (he has even been round especially to discharge me when ive been admitted before - fine by me, but not always the most sensible thing to do!)
huge hugs to all - thankyou so much - i'm still nervous but feeling more validated in my concerns etc
Good luck Soph, Rachel and Jenny with your appointments tomorrow. x
Soph- just wondered if your uni would be able to help with the costs of taxis/transport to hospital etc. When I was at uni (was a while ago now!) my friend was on crutches for ages and the uni paid for taxis to lectures etc. Also some unis do have a minibus shuttle service for disabled students/ students with broken legs etc. It might be worth looking into.
I hope the appt went OK and you got something out of it.
How did your appointment go? We still have no answers
Jenny x
sorry you didnt have a good appointment. Im really tearful at the moment, will probably have a rant about my appointment tommoz (or in the middle of the night tonight) but just cant face thinknig about it right now xxx
Oh no I'm sorry things didn't go well, you rant away whenever you feel ready. X x x
Hi Soph
Hope you're ok?
x
So. Lets start by being positive. He clearly believed me, and dint think i was a psych patient as he has implied in the past, and basically said that when he sees me as an emergency he has to hurry around. He also acknowledged that attacks can take more than 12hrs to resolve, and that he was happy for my consultant at home to take over my care - but that he wants to 'keep me so that when im unwell at uni there is someone who knows me. He was pleased that i have managed to get my steroids down, and said i can stop them on saturday. He has also agreed that i can lower my antidepressants (another part of his accepting i'm not a psych patient - its been so frustrating as i've been feeling the most mentally strong that i have in ages!).
thats the best i can say from the appointment - and i know, i should be happy to have good things to say.
however. He commented on my weight gain AGAIN, and made out like my priority should be losing some. its not as though i'm just being lazy and eating loads. I'm getting less calories than i have ever eaten in my life (spent most of my life trying to gain weight) and i currently CANNOT exercise - i am hoping that it will become possible for me to lose weight a bit easier once i stop the steroids, but actually i'm not a ridiculous weight right now, and him constantly mentioning it is simply adding to my hatrid of my body. my mum is actually really upset about this coz i always used to be really happy in my own skin - currently i can barely look in the mirror without wanting to cry. He acknowledged the significant impact my symptoms were having on my everyday life but seemed completely disinterested in doing anything to stop them. His plan is to reduce meds, which is what i want, however i was kinda hoping they would be replaced by something that works. I am only able to reduce my pred and reduce my hospital attendances by accepting more daily symptoms, less activity that i am able to do, and by tolerating more and more severe attacks on my own for longer and longer. It isn't that i'm getting better - i'm getting braver (and possibly sillier). He basically said that i should take 6 puffs of my inhaler and wait half an hour before i ring an ambulance - so clearly he's under the impression that that isnt something i already do. I told him i NEVER ring 999 before i have taken at least 16 puffs (6 lots of 2, spaced 10 mins apart, and than 10 puffs and wait 20mins is what i do as a standard) however if i get even slight improvement from that then i'll wait longer before ringing 999. This is how i dont go to hospital several times a week. he seemed surprised that i ever had to ring an ambulance after doing this - which confused me - a neb is 10 puffs, so A&E can only occasionally get my breathing under control with the equivalent of 70-80puffs, so why would 16 sort me out??? he felt that my asthma wasnt particularily serious as my chest tends not to sound wheezy for more than 12hrs. However this is only because i am always discharged within this time, i usually have a few days of repeated attacks after i have been discharged. (i am often discharged during an attack tbh) he said i shouldnt let it bother me if A&E staff are rude to me - not particularily helpful. he was more than happy with my PF, which was at 70% of my best - he no longer believes my best is 600 as he has never seen it (maybe because i am always discharged at the first opportunity) however i had a sprio at home and my PF after salbutamol (its much easier to take it when you're well) was 589, so not the 450 that he works off!!!
i think what upset me the most was that he did nothing to help me. and actually is continuing to reduce meds as fast as possible, and i so badly wish i had discussed it with him better but after the comments about my wieght (which were too subtle for me to make a complaint) i was already really upset, and when it was clear he was not interested in giving me something to help i was soo tearful that i couldnt talk properly, and i am ever-conscoius of being dismissed as a panicking teen that i was trying to maintain my composure. i'm seeing him again in 5 weeks. I just dont know what to do. I feel so completely hopeless and dispairing. He's not even my 'main' consultant, and so i guess my other consultant will maybe do a bit more for me in April, but i just want something that might be able to help me actually get on with my life. I dont think i am at the end of the options for treatment (antihistamines, theophylinne, montelukast, seretide, fluticasone, antidepressants, salbutamol - is that really all there is???) and so i dont think we should be at the point where i am having to accept limitations on my way of life.
had a good long cry and ate some theraputic chocolate - still not feeling much better, its jst such a long wait when i felt like i had already waited as long as i could, i have spent the last few weeks 'hanging on' until this appt, and 5 weeks is a much longer time to hang on for! ugh! its so hard sometimes!
Hope you guys are all well, and thanks for the kind words - really helps to feel less alone! xxx
in reply to
So sorry about the upsetting visit with cons. You deserve better.
however. He commented on my weight gain AGAIN, and made out like my priority should be losing some. its not as though i'm just being lazy and eating loads. I'm getting less calories than i have ever eaten in my life (spent most of my life trying to gain weight) and i currently CANNOT exercise - i am hoping that it will become possible for me to lose weight a bit easier once i stop the steroids, but actually i'm not a ridiculous weight right now, and him constantly mentioning it is simply adding to my hatrid of my body.v
Grrr. I'd have understood more if he were concerned about the weight gain as evidence that pred is having side effects,.
I really don't get this pre-occupation with weight. Although asthma does have some correlation with obesity, not everyone who is obese has asthma and not everyone who has asthma is obese. Correlation is not causality and treating it that way helps no one.
I'm borderline underweight right now and have always been at the low end of BMI (family genetics - no fault or effort of my own), yet my asthma is still uncontrolled with at least mild symptoms throughout the day and sometimes more despite nearly four months of playing around with medication and 35mg of maintenance pred. It happens.
Part of the obesity push may be articles like this one (see ncbi.nlm.nih.gov/pubmed/227... ) where it is argued that weight loss via gastric bypass is associated with increased asthma control for certain phenotypes of asthma. It apparently improved reactivity (response to the methacholine test) but had no effect on osinophilic airway inflammation.
I didn't read more than the abstract, but the fact that abstract says that the effect is particularly connected to gastric bypass weight reduction makes me think that (a) this improvement may really be a third factor effect - that's a massive change to the GI tract and we already know that GI and lung issues can be interrelated. (b) gastric bypass is usually only considered in cases of significant obesity, so if there is any support for the ""obesity theory of asthma"" it would most likely apply to those that are very obese, not those who are merely thicker than ideal.
Having a good weight is important for lots of reasons, but sometimes it seems to me that doctors are so eager to push the gospel of healthy BMI that they grab at any straw, however irrelevant, to try to push, cajole, guilt and manipulate people into eating better. They aren't actually doing it to solve the health problem at hand (asthma), but just looking for any excuse to preach the gospel for the general health benefits.
Even if the intentions are good as regards general health, I think it is really out of place to preach at someone when someone has a medical condition or is on medication where weight gain is a known symptom or side effect, e.g. systemic steroids.
At the very least before ANY ONE starts talking about weight they should be asking smart questions about eating habits and not just assume that someone is being neglectful ignorant of the importance of healthy eating.
Doctors and other health practitioners seem to be very bad at this though. Several years ago my husband had open heart surgery due to multiple blockages. In the recovery period a nutrionist came round and told him all the things he should eat. Problem was: we were already eating in a heart healthy fashion at home and my husband was also doing a great deal of exercise. But no one asked, they just handed out information and assumed. Meanwhile my husbands real dietary issue went unaddressed. My husband does have a problem sometimes with snacking at work in less than healthy ways and even at home he seems stuck on the idea that he needs portion sizes that are probably larger than he actually needs, but nothing we were told addressed THAT issue.
my mum is actually really upset about this coz i always used to be really happy in my own skin - currently i can barely look in the mirror without wanting to cry.
Good for your mum. She's a lot smarter than this doctor. My vote is you should listen to her and put this doctor's fussing in the circular bin where it belongs.
in reply to
Although asthma does have some correlation with obesity, not everyone who is obese has asthma and not everyone who has asthma is obese.
When diagnosed with asthma I was overweight, a year ago, I lost 3 stone and fell to a BMI of about 22 and guess what, my asthma got worse!
My sister has a different medical condition, she was obese and they told her to lose weight, she's since lost about 7.5 stone (is now a healthy BMI) and is now on more medication than before!
So yes, sometimes weight loss can help, but not always!
Arrgggh Soph you have every right to feel so frustrated and let down. Anyone would in that situation. As Stray said it is really stupid that docs still assume that all asthma problems are psych related. With regards to him making unhelpful comments and silly med decisions. After years of various cons saying and doing sometimes really obviously stupid things my conclusion is that soke docs feel they arent so sure what would be best but that anything is better than nothing. Not being able to immediately cure everyone makes them feel insecure as people.
Massive hug! Pampee yourself...you sooo deserve it.
Rose xxxx
Aarrghhh! Rant away, I know that post-appt feeling so well and sometimes they say things that are just ugh. I still have a distinct memory of storming away from a neurologist's appt absolutely furious because his only solution had been to tell me to lose weight. It seems to be something some doctors have an obsession with, even when it is just so not what needs to be said or even a major issue and is just going to make you feel crap. In my case he had, get this, suggested it for a shoulder problem - wtf? Hadn't been able to find anything (which is good, no-one wants a neurologist to find anything) but when I asked what else I could do he basically said, oh, nothing, put up with the pain, but you could lose some weight. (Bear in mind he didn't even know how much I weighed, the only figure he could have had was not 'overweight' for my height and though I had been in the past I certainly wasn't then).
Just thought I'd say that in case it helps with the rubbish feeling.
On a practical level, this guy is not helping at all. Did you get a chance to ring the AUK line, and did they help? Definitely worth a try if not, and as I said I think you should go and chat to your GP when not desperate for A&E (he should read your posts on here btw, then he'd know it appears to be a major effort by many people to get you into an ambulance!) When would you be able to see your 'home' cons. Are you at uni far from home? Could you take a day to see them before the end of term, if you can get an appt? I just think the communication issues here are bad enough to be getting in the way of your care; I've been there, if not this seriously, with a resp consultant and it really helped to change.
Good luck, crossing fingers etc and I agree - pamper yourself, you need it after that! And talk to your friends to take your mind off it.
Hugs.
thankyou guys
I worry sometimes that the issues im facing are because i'm a teenage girl - and my consultant gives the impression he thinks i'm essentially being hysterical a lot of the time!
stray - yeah, i cant believe how much they focus on the psych side of things - especially in an emergency setting i dont think it makes sense. actually in that situation it is wholly appropriate to panic. I had some great paramedics when i was panicking (after the woman on the phone when i rang 999 didnt seem to understand that because i was OUTSIDE i wasnt in one of the university accomodation blocks - and she just kept asking which accommodation i was in!!!) who simply reminded me to pull the neb into my lungs as slowly and deeply as i could. even though i was panicking as well, it helped more to not have someone dismissing my symptoms, in fact they basically ignored the fact that i was blatently sobbing and hyperventialting and kept talling me that i was ok now, and it must have been scary but they were going to sort me out now. I suspect the anxiety i was (justfiably in my opinion) feeling would have had a much bigger impact if the paramedics had focused on it and been more dismissive of the more urgent asthma symptoms. And I cannot believe he though i was ringing an ambulance if two puffs didnt work. this was after a conversation where i had said i was taking my inhaler at least three times a day, clearly he got the impression that the rest of the time i didnt experience any symptoms!?!?!
rose - this particular consultant has actually said to me before that i was making him look bad to his collegues, because he couldnt stop me coming into hospital and i 'only had asthma' i was so shocked i just didnt know what to say!!! Will deffo be spoiling myself rotten this weekend, ive had a very tough week and i suspect tommorrow is going to be hard too. I had this appt yesterday, physio today (and i hate physio - i feel so sick and breathless doing all the exercises that i just want to cry, but i cant not go coz then i'll be accused of nott rying to make myself better. And now she's told me i'm not allowed to cough anymore, when i googled how to try not to do this the internet said not to if you were coughing stuff up coz then you'll get a chest infection, and within two hours of trying to stop my lungs were so rattly when i breathed that i couldnt really move without gagging to stop coughing - eventually just gave up and coughed up all the gunk in my chest - not sure what to do now though!!!) and tommoz i have exam results and my dyslexia assessment, which i dont really wanna do! sigh!
philomela - not sure how weight is gonna affect your shoulders (unless you just had one really fat arm maybe!) glad to hear its not just me. was much easier when i had a load of doctors who didnt understand the difference between a phobia of eating and an eating disorder so were really careful what they said to me. fortunetely (?) with the pred muchies i'm not sure i'd be able to starve myself, i think he'd look really bad if i did though! lol! I hate it when they dont find something obvious so assume its nothing! I did ring AUK, and we came up with a few things to discuss most of which i did - but when i was talking to them i assumed he would have some kind of plan for where we go next with treatment and so my contribution would just be discussing things i was uncertain with (like how im meant to deal with the fact that im not allowed a home neb, cant go to gp if i need a neb coz they ring 999, cant ring 111 of NHS direct if i need a neb coz they send ambulance, and yet if i go to A&E and only need a neb they criticise me for coming in!!!) so i didnt really ask them what sorts of treatments we might try next. i was wondering about trying atrovent - not sure if GPs can give it for asthma though! I'm seeing my home cons at the start of april - first time he could fit me in! (and convenient as i'll be home from uni then) just a shame coz its a bit of a wait (i know people wait longer than me but im feeling really impatient!) and yeah - it takes a lot of people to get me to ring an ambulance - i'm tempted to start a thread on here called ""stop being silly and ring an ambulance"" and we can all just post a message to our ill selves and tell us to ring 999 sooner rather than later hehehe!
gonna go have some emergency super noodles thanks again for the kind words guys!
Sorry your cons is being so unhelpful!
It is just so frustrating when everyone seems to contradict themselves. I've had a similar thing before where I was told to go to OOH if I was needing more than 2 puffs of ventolin every 2 hours. Had already ignored that and was using 6-8 puffs every 2 hours and when that wasn't helping and I still couldn't walk much or sleep at all went to OOH to be told there was nothing wrong, they couldn't give me pred and basically dismissed. When you're already frustrated with constant symptoms it's the last thing you need.
lol, glad it maybe helped a bit! For me it helped that my housemate thought it was really funny and kept telling me my huge ass and arms were taking up the whole kitchen (I know she would never have said that sort of thing or found it funny if she actually thought the dr had a point and I did need to lose weight), and another of my friends on the phone said 'I didn't realise you walked on your arms!' I was pretty paranoid when I started seeing resp docs because though I currently have good 'measurements' eg my waist etc and not that much body fat and I have been assured I don't look overweight at all, my actual weight is at the top end of normal/low 'overweight' and I hate having that conversation esp when I have been larger than ideal in the past. But no-one respiratory/cardiological has ever commented on the weight or suggested I'm 'just unfit' because of the number on the scales, though I did have a reg who was feeling my abdomen and asked if I'd lost weight because my trousers were loose! (I might have done but I have no scales, can't see the point, and all my trousers seem to stretch whatever I do so I figure it's not me). I cannot see how it helps in any way for them to comment so though it's easier said than done, try not to let this idiot get to you!
'Only had asthma' - and this from a resp cons? Uh, yes. I wouldn't have thought he'd need educating about the '3 a day, 90% preventable' thing AUK says, but apparently he does. Yes, you can have mild asthma and you can't have mild lung cancer, but seriously, for someone who probably needs to be calling an ambo even more than you actually are?
Re the coughing: I saw a physio to help with cough suppression and 2 things:
a) It helps if like me, you have a dry cough which doesn't bring up anything. All it does, the physio explained (and my current amazing physio has also said) is get you into a cycle of inflammation, so that one you have to try and suppress - though current physio also said you can't do with all of them! They both also said not to try and suppress a productive cough because you need to get the mucus out!
b) You can't really learn how to do it from the internet or just 'not cough'. It is really, really hard at first and you need the physio to teach you how to do it and then practice at home. Doesn't seem like you should be trying to do it anyway, but either way, the physio shouldn't be telling you to just go away and do stuff. I once got 'shown' how to huff if I did have mucus but I didn't really get the hang and physio didn't really wait to see if I had so it wasn't very helpful.
d'oh. Last post was long enough but I still forgot 2 things I really wanted to say:
1) I'd ring the AUK line again now you know what your cons is thinking, and ask for their input given what you know now - say what you've done already.
2) My GP prescribed Atrovent and I really like it. Not 100% sure where it fits in (used it as a reliever for a while) but I was given it when my nights were pretty bad and it really did improve things. So I would say, worth a try definitely!
I did think it was strange that she was telling me not to cough - ive got so used to the fact that if i do cough its productive (or i dry cough for an hour and then its productive -eww!) that i didnt think to check - also - you'd assume a resp physio would ask! I guess maybe she'd heard me cough and it was dry during our appt so assumed it always was. by the time i got home from physio (my lungs seem to make gunk whenever i walk anywhere) my lungs were so rattly that i sat down too hard on a chair and that was enough to make me choke and cough all the junk up. Thing is i'm not seeing her for three weeks, so what should i do, just ignore the coughing part and ask about it in three weeks? i'm really paranoid she'll just make me go and do it again.
when you saw resp physio did you get told to do exercises where you had to just take little breaths, and how did you do it? so far i have been completely unable to do it any way other than by tensing my shoulder and stomach muscles to put a physical barrier that stops me taking a nice deep breath that i want to take. but she wants me to do it without any tension at all. again i can just about overcome the reflex by tensing my hand muscles and leg muscles but she wont let me do this either, nor my jaw. I cant be completely relaxed and not breathe, its too hard, i find it nearly impossible. she said today that it was more important to be relaxed than to take little breaths, and i found it much easier when she said that, and had no problems whatsoever doing all the breath holding stuff she was asking me to do, but as soon as she said i had to do it again with little breaths i couldnt do it. i get so frustrated!
i guess they're trying to undo years of habit and its going to feel horrible at first. i feel like she's pushing me too fast. thing is i can do it in the sessions but by the end i usually feel sick and headachey and exhausted and tearful, not something i can put myself through three times a day. problem is i can do something that i find almost impossible as long as its only for a short period of time (emotionally to me its no different than if she was making me self harm or something - yes i can do it, but i dont want to and emotionally i find it very overwhelming!) i know thats a slightly melodramatic comparison but thats how it feels!
oh yeah - and afterwards, how do you cope if you get really intense air hunger afterwards. i find the sessions so hard that i feel i have 'earned' a break afterwards and have found that if i fill my lungs as much as i can and then hyperventialte and repeat this a few times they kind of feel nicely stretched out and i feel a bit more human for a bit! lol! i look so mad sat doing it on the bus. i dont think its bad for me? not great for the getting into the habit of breathing right but its the only way i can feel back to normal and able to get on and walk around easily and stuff afterwards!
this turned into a much longer post than i intended - lots of physio questions i guess! hehehe! thanks
in reply to
Soph - YAY WELL DONE!! So amazing - it would be anyway but particularly given you were ill during both and then to do so well!
I realise I got distracted by the v interesting discussions (btw Beth - apologies for posting in haste - it was the difficult asthma bit but I realised I had to go out!) and forgot your physio questions.
I did think it was strange that she was telling me not to cough - ive got so used to the fact that if i do cough its productive (or i dry cough for an hour and then its productive -eww!) that i didnt think to check - also - you'd assume a resp physio would ask! I guess maybe she'd heard me cough and it was dry during our appt so assumed it always was. by the time i got home from physio (my lungs seem to make gunk whenever i walk anywhere) my lungs were so rattly that i sat down too hard on a chair and that was enough to make me choke and cough all the junk up. Thing is i'm not seeing her for three weeks, so what should i do, just ignore the coughing part and ask about it in three weeks? i'm really paranoid she'll just make me go and do it again.
Well, I am no expert but I think it might be safer to wait and explain why you didn't do them when you next go. Worst case you miss 3 weeks of physio, but it doesn't seem like the best idea when you aren't sure and it seems like you do have a productive cough which you shouldn't be trying to suppress. I am no expert but figure you need to know more!
when you saw resp physio did you get told to do exercises where you had to just take little breaths, and how did you do it? so far i have been completely unable to do it any way other than by tensing my shoulder and stomach muscles to put a physical barrier that stops me taking a nice deep breath that i want to take. but she wants me to do it without any tension at all. again i can just about overcome the reflex by tensing my hand muscles and leg muscles but she wont let me do this either, nor my jaw. I cant be completely relaxed and not breathe, its too hard, i find it nearly impossible. she said today that it was more important to be relaxed than to take little breaths, and i found it much easier when she said that, and had no problems whatsoever doing all the breath holding stuff she was asking me to do, but as soon as she said i had to do it again with little breaths i couldnt do it. i get so frustrated!
I have been told to keep an eye on how deeply I breathe, yes. I find it deeply weird that I could ever be breathing too deeply given I am forever being told off by exasperated doctors for not breathing deeply enough! Also by a vocal coach/Alexander technique person I used to see. This breathing stuff is complex! I find it hard to notice when I'm doing things wrong and did find the exercises (focusing on breathing from diaphragm with good rate and rhythm, not too deeply) hard at first and I have been told muscles were/are v tense though I often don't notice this.
i guess they're trying to undo years of habit and its going to feel horrible at first.
Oh yes. I never realised before that resp physios could be just as sadistic as the other variety. It's hard work changing your breathing!
oh yeah - and afterwards, how do you cope if you get really intense air hunger afterwards. i find the sessions so hard that i feel i have 'earned' a break afterwards and have found that if i fill my lungs as much as i can and then hyperventialte and repeat this a few times they kind of feel nicely stretched out and i feel a bit more human for a bit! lol! i look so mad sat doing it on the bus. i dont think its bad for me? not great for the getting into the habit of breathing right but its the only way i can feel back to normal and able to get on and walk around easily and stuff afterwards!
thanks
Hmmmm I don't know - I have never had it that bad! It doesn't sound great, not sure about that as I don't feel qualified to comment. Would the AUK people be able to help, if you perhaps are going to ring them? (suggested this above, not sure if you saw it but think it might be worth doing now you know the situation).
Sorry for another huge post, hope this helps! And congrats again!
in reply to
philomela - yeah - i'd forgotten too - good thing someone is paying attention! and i think i'll ask my physio about the stretching out thing (and the air hunger is horrible yes, i get it SOOO badly, i always have - i quite often accidentaly freak out A&E staff coz i squirm around trying to move air around my lungs and if i dont realise they are watching i guess it looks like a seizure or something - ooops!!! takes a lot of explaining that im not just bonkers!)
think i'll ring AUK - but might wait till i'm less twitchy about the whole subject - trying to give my brain a few days off dealing with my asthma. Not really trying to just deal with any of my symptoms (so using a lot more blue right now) and meds are all set up so tis fairly easy to just do them. not doing anything that can trigger me coz im just not up to dealing with it for the minute! ive decided i'll start dealing with it again on saturday (theoretically my last day of pred! eeeeeeekkkkk!)
and my mum is a physio and she says they do a full module on evil and how to torture patients - could believe that!
thanks again to all!
Hi Soph, sending you a big hug. personally I think someone who says things like ""only asthma"" does not deserve to be practising. Give yourself time to get over this with a bit of tlc and then plan your next step. If it is at all possible, take someone with you to your next appointment and write out some points or questions you want to talk about. Is it possible to request a different consultant? I found one hospital (in London) was not helpful and also giving me conflicting advice so I discussed it with my local consultant and wrote to the consultant in London explaining exactly why and discharged myself. This letter will now be in my notes to set the record straight. I also copied this to another consultant in a nearby hospital who I had been seeing prior to going up to London and he wrote back to me saying that he was sorry that I had not had a good experience and did I want to go and see him again (yes please!!) Only now do I feel that I am being cared for. The impact of staff attitudes and treatment is much greater than they could possibly imagine, but there are good guys out there. Best of Luck.
thanks guys! I think what we should do is create a system where whenever any of us has a cons appt, or goes to A&E then we all get private jets in to the place and walk in (wheeze/wheel in if needed) together - then we'd all get the treatment we need - yes i'm sure its gonna be expensive, but deffo worth it
yeah - the only asthma comment was slightly ridiculous, also the idea he has than anything less than 12hours is not really an asthma attack, just being symptomatic! lol! i just laughed at that. He's a resp cons as well, its shocking! I have thought about getting a different consultant, its just hard as he isn't my 'main' consultant now - im not sure how much i NEED a good one at uni if my treatment plan is made at home. will see how my appt goes in april, if i still feel like i need more support at uni (for example if they are going to have to make many decisions) then i'll probably ask to change - if not i'll stick with this guy for easiness sake!
At least we'd have company while we waited and some moral support! I think there's a certain amount of confirmation bias with some of them - they only see the evidence which supports what they were already thinking and not the bits which contradict it, so it doesn't matter what you say, some of them will just not listen or take it on board. I have had that conversation more than once. Love 'some people can't be confused with the facts' - yep, too many and not just in medicine.
Sometimes I wish they'd see what people write on here - except I don't really, because then they might read the rambles I write and connect it to me, and I need a place to rant about them
v interesting about it being a syndrome. I would like to see more recognition of that (and a lot less of the 'in your head') stuff. Because I am definitely one of those people who just doesn't fit in the 'classic' box - for instance the fact that I've never been to hospital with acute asthma despite being on BTS step 4 and not quite controlled though definitely better than I was before; just using me as an example (and I know there are others on here like this too), there doesn't seem to be necessarily any recognition that you can have asthma that's more of a 'daily' issue rather than up and down like my grandfather (fine then sudden bad episodes - bizarrely, my mum told me although he'd had asthma all his life, it stopped after he recovered from a bad heart attack - a rather drastic solution!).
I'm sure that there are 'types' which are much more common but it doesn't mean others aren't 'real' or a problem. I'm very glad not to have needed hospital but on the other hand, I also feel that I don't always get taken seriously when I want to discuss the daily symptoms issue which when flaring up is a problem re doing things - perhaps because nobody sees it since it's not acute episodes. My friends and my mother certainly notice when things aren't right!
EDIT: Oh, forgot this: guidance.nice.org.uk/QS25 - new guidelines on asthma treatment. Scratching my head over what I am if not 'difficult' (in the asthma sense lol) - never thought I was severe but I don't fit difficult and moderate either, if there even is such a thing. Interested to see you are defo now meant to have a personalised plan, will use this as ammo at next appt.
in reply to
Good point about company!
v interesting about it being a syndrome. I would like to see more recognition of that (and a lot less of the 'in your head') stuff. Because I am definitely one of those people who just doesn't fit in the 'classic' box - for instance the fact that I've never been to hospital with acute asthma despite being on BTS step 4 and not quite controlled though definitely better than I was before; just using me as an example (and I know there are others on here like this too), there doesn't seem to be necessarily any recognition that you can have asthma that's more of a 'daily' issue rather than up and down like my grandfather (fine then sudden bad episodes - bizarrely, my mum told me although he'd had asthma all his life, it stopped after he recovered from a bad heart attack - a rather drastic solution!)... never thought I was severe but I don't fit difficult and moderate either, if there even is such a thing. Interested to see you are defo now meant to have a personalised plan, will use this as ammo at next appt.
It took me years to really believe I was asthmatic despite classic spirometry (FEV1 increases > 12% pre-post BD) and a doctor who was more convinced than I was that I was asthmatic! As a result I didn't use preventer regularly and tended to have frequent exacerbations.
It was really hard to see myself as an asthmatic because like you I viewed asthma severity as a matter of ""attacks"" rather than on-going symptoms.
Until this year I NEVER had sudden flare-up that lasted for a significant time even after the trigger was gone and I never felt like couldn't breathe at all, Nor did I ever feel scared - i.e. the classic asthma attack. I either had brief flares that passed with the trigger or long running flares that developed slowly along with a respiratory infection or virus and stayed long after the virus was gone. Neither fit my stereotype of asthma so I even with the spirometry, I just didn't see myself as asthmatic.
Both US and UK current guidelines classify someone with poor control despite good compliance on medium or high dose ICS (US treatment step 3/4; UK treatment step 4) as ""severe/difficult"". Control is measured in terms of quality of life and frequency of daily symptoms, and not just objective measures like spirometry. Also, severity of symptoms does not matter: one is still difficult/severe even if the daily symptoms are mild and go away quickly with a puff of reliever provided the overall impact interferes with daily activities/quality of life. See
I'm not sure why the old stereotypes persist. Even when I was in my 20's and first diagnosed there were doctors out there that understood asthma wasn't all about scary ""help I can't breathe"" attacks. My own doctor was one of them. So it can't all be about people not bothering to learn new things since they left med school or nursing school.
But maybe my doctor 20 years ago was better educated than most given he was asthmatic himself. Perhaps what he told me about asthma was bleeding edge for the time and hence not what today's doctors were learning from standard textbooks? So perhaps it wasn't part of what today's mid-career GP's were trained in? Whatever the reason there are a lot of people out there that have to be very persistent if they want good asthma care and that's a problem.
Update: clarification about mildness of symptoms, fixed dyslexic typo (< vs. >)
Hmm that is interesting - thanks for the links. The link I posted suggested that you needed to be poorly controlled on adherent step 4 or above PLUS have one or more of:
-2 hospitalisations in last 12 months, any episode requiring ventilation in last 10 years, FEV1<70% predicted post-bronchodilator, maintenance pred for more than 6 months.
So maybe they've changed it? Rather confusing, as if I weren't confused enough! None of those is me, except possibly the spirometry thing once post-bronchodilator (it was 90% predicted but the FVC was about 120% predicted I think, so the consultant felt the ratio was not brilliant as FEV1 should actually have been higher and predicted was not accurate). Otherwise spiro is inconsistent/unhelpful/ok but confusing with me so I hadn't really figured it was helpful or that it showed 'severity' in me.
I have met some doctors who are much more willing to think outside the box, including my GP. But equally there are too many 'peak flow jockeys' who will not deviate from the standard. Perhaps asthma is a good motivator to read the latest research - I believe this was the motivation for this guy en.wikipedia.org/wiki/Roger... (who I am pretty sure must have known my grandfather, seeing as he was around at the same time in the same place and doing similar things),
in reply to
Hmm that is interesting - thanks for the links. The link I posted suggested that you needed to be poorly controlled on adherent step 4 or above PLUS have one or more or of
-2 hospitalisations in last 12 months, any episode requiring ventilation in last 10 years, FEV1<70% predicted post-bronchodilator, maintenance pred for more than 6 months.
There are lots of links embedded on the page you linked to - which document did you have in mind and what page of the document.
The definitions of severity I cited above can be found in the standards of many countries. I don't think they are new. Other examples:
* Scotland: SIGN quick reference: sign.ac.uk/pdf/qrg101.pdf : ""Difficult asthma is defined as persistent symptoms and/or frequent exacerbations despite treatment at step 4 or 5"" (no additional criteria specified) - p. 20
* Austrailia: National Asthma Council of Austrailia: nationalasthma.org.au/handb... - scan down to bottom for chart of treated asthma. They add the criteria that daily symptoms on moderate ICS need to be disruptive to daily activity to qualify as severe, but any daily symptoms on high ICS also qualify as severe.
Update: correction to Australia.
OK - now I see what you are talking about. - publications.nice.org.uk/qu... . I'm not sure why they are different from practically everyone else, including the BTS/NHS guidelines used in Scotland.
By this standard if you are frequently mildly symptomatic at step 4 and for some reason can't take oral steroids, then you wouldn't qualify as severe even though another person with the exact same symptoms who could take oral steroids WOULD count as severe.
Perhaps a money saving definition rather than a scientific or medical consensus definition? (we don't have to provide resources to treat you unless you need or can use maintenance pred?)
couldnt be bothered to start a new post! But.....
I GOT 100% IN THE OTHER EXAM I DID - AS IN DESPITE HAVING JUST GOT OUT OF HOSPITAL!!! WOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
YEAH!!!!
So happy - makes the rest of the week seem less horrible
thought id share the joy!
Wow!!!
That is amazing and you must be so proud of yourself!!!!!
I can relate to this as i passed a level equivalents in the hospital. At he end of the day it really doesnt matter if you were in costa or just got out...or on O2 or fell down the steps getting there or had to get up in the middle and hop around to reduce pain (yes ive done all that too lol). What matters is that you got an akazing result!
MASSIVE CONGRATULATIONS!!!!!
Hugs xxxxx
Soph - totally utterly awesome - Congrats!
Fantastic news on the exam results, well done you xx
thanks team its so easy to get caught up in the constant battle to breathe and keep up with work and keep up socially and keep my flat in a state that wouldnt make my mum faint and sleep and eat and stuff that its lovely to just step back and feel like im on top of one area of my life! such a smiley girl, wish i could go back in time and tell tuesday-soph that i'd have a pretty good thursday! although i am now officially dyslexic - bit weird to get a diagnosis at my age but there you go!
Well done in your exam - that's a brilliant result! You clearly can cope under pressure (and you're obviously very clever).
I'm really sorry you had such a hard time with the consultant - it's horrible to have to deal with that type of attitude. I don't think they fully realise what people are going through when they are trying to cope with illnesses that just won't behave! It makes such a difference when you see a consultant who doesn't let their ego get in the way of how they treat someone and actually think about the person behind the symptoms. Also I don't think they like to be wrong so when confronted by someone that doesn't fit into their little box of symptoms they almost become defensive and start to turn it back to the patient as if it's their fault.
Hope you've been giving yourself some well deserved tlc.
Yep definitely think it's good to find out! I volunteer at the local dyslexia charity (not dyslexic myself but is relevant to my masters plus I have friends who were really screwed over by not knowing they had it and I'd like to help) and I have definitely learned that all dyslexics are not the same!
For a start as you probably know it doesn't always have the same cause, like you say it's not just about reading as that's just one end result of things working differently and then obviously people are different - so you may just be better at learning coping strategies! Hope the lenses help, either the yellow or blue ones - presumably you'd be able to test them out first before committing as I know generally it's EITHER yellow or blue (and there may be other colours but think those are the most common)?
You prob know loads of this already...would PM you but as I can't (hope this is ok to post) if you're interested in reading more try googling Prof John Stein as he's done loads of work in this area and looked into the causes etc.
PS hehe physio school module on evil and torturing patients - yep sounds about right! At least they're honest
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Hugs. I do completely understand that pre-appt nerves thing! I get it even when seeing consultants who have been good before as I am never quite sure what they're going to say, so it must be horrible when you're seeing someone you don't really like or trust who hasn't helped you so far. 
Confusing advice from consultant
Asthma not well controlled 
Curious - fever with asthma attacks, no infection markers/signs?
Losing my confidence in treatment. 
