RBH next week

So...off to RBH on Monday! Was going to be just one night, but while they are lovely they also seem not to be the most organised of people, and apparently some of the tests I'm having are hard to schedule, so it's now Mon midday-Thurs middayish, and back to clinic on 15th.

Will admit I'm v.nervous: yes, I'll be keeping an open mind but also really hope they are too, and am really worried that having now felt like I've got somewhere with my other cons, I'll be back to square 1 after this and no further towards better control - though as ever, I know it could be worse.

Not so nervous about tests though I know they won't be fun. tbh it seems there'll be more hanging round than anything else, so I have my Kindle, my iPad, work to do and have arranged to meet friends during the week, as it seems they let you out. Hopefully it will be sunny as I remember there's grass nearby.

Would be nice to see ppl from here, if any of you happen to be there next week! Though not sure how we'd arrange it as there's no PM system yet...

96 Replies

  • Be Massively thinking off you, and feel free to text me if you need company from the other side of the UK :D

    Got everything crossed for you in the hope that they can sort things out and you can start to lead a ""normal"" life again!!

    I think if you didn't feel nervous, there would be something massively weird about you lol, I was nervous when I went to Birmingham for the day, let alone anything else.

    Good luck, and keep me posted!!


  • Thanks Charlie! I defo will be texting you, will prob be really random too.

    I know this may sound odd to some of you frequent flyers on here, especially for someone who is going to the Brompton given that most ppl there have been in and out, but this will actually be my first time ever as an inpatient in any hospital! Before this I was pretty healthy, never had an op or anything and now my lungs are just day to day annoying and puzzling so while they do restrict me a little at times they're not bad enough to stay in.

    I think I'm doing it in style lol - no ordinary local hospital for me, oh no ;) Just hope I don't breach any unwritten rules of hospital etiquette...

  • I think I'm doing it in style lol - no ordinary local hospital for me, oh no ;) Just hope I don't breach any unwritten rules of hospital etiquette...

    Interesting you should say this, bonus points for you if you can find the poster with the old hospital rules on them at RBH! Some of them are quite funny, like you not being allowed to stay in bed without written consent from the doctors

    Clue: They're near CT

  • go for it, will keep me amused!!

    and dont worry, there is certainly no etiquette within hospital...not unless its my hospital and spongebob PJ's are a must!!


  • Good luck Philomela! I will be thinking of you all week! I really hope the information they gain is another piece in your very own, unique jigsaw puzzle xxx

  • I hope it all goes well for you next week Philomela. xx

  • Hope you get some answers, grin and bear it with the organisation (or lack there of).

    Talking of hospital etiquette - which made me laugh, you should be ok as long as you don't have a tendency to sleepwalk and bump into other people's beds. Been some interesting posts over the years about fellow inmates. Seriously speaking though, any such new experience and surroundings will be strange.

  • hehe TJ yes I've seen those posts - well haven't sleptwalked yet and am also not an old lady with dementia so hopefully I will be ok and not annoy anyone. Though am likely not to have the best sleep what with not having meds and being somewhere new with other peeps in room. WIll have to tell you how it is.

    Charlie you made me laugh with the Spongebob PJs - glad you're not there to enforce the rules ;) I will admit to saving my favourite, most seemly PJs for next week though, and my nice dressing gown. Not often I get to show them off!

    tbh the thing I'm finding it hardest to wrap my head around right now is dinner at 5.30...I've eaten LUNCH at 5.30. And very occasionally dinner, but do find it weird - am hoping they'll let me out for a bit in the evening so I can meet my friends outside the hospital, though not planning to trek far.

    JF - hehe yes, though I think atm half the pieces of my puzzle are on the floor or down the back of the sofa lol...

  • Good luck philomela - will you be on here while you're trapped?

    I enjoy reading your posts

    I hope you find some answers to your ""weird asthma"" haha

  • Thanks jinglfairy!

    Yes I will, apparently there's free wifi and I'm going to attempt to do some work while I'm there (need to write some posts for the company blog) - I expect I'll get distracted though!

    Will be nice to be on here as feel I can be frank - harder on FB (though can restrict who sees posts), but for everyone else I don't like to say too much as it's 'wow you're in hospital for a week (nearly), are you ok?' etc - nice that they're concerned but find it bit hard to deal with and explain what's going on and why I'm there etc. Ppl ask if I'm going away on holiday lol - hehe, not quite what I had in mind, though had my real holiday in May.

  • Good luck for next week!

    Hope they can sort you out so you can start to enjoy life a bit more!

    Just being nosy now, but what time is your appointment on the 15th?

    Only asking as its when I go to clinic for the first time, might've nice to go for coffee if we are there at a similar time.

    Ellie xx

  • Thanks Ellie! Things aren't as bad as they might be, or are for others, but it would defo be nice to get some answers.

    No worries about being nosy, not like you can ask by PM and I did say if ppl are there...

    My appt is at 9.15, with Dr MG - yours? Coffee sounds lovely, and at the very least if we're at similar times we'll have someone to talk to. Are you on FB? Don't really want to say name etc on open forum but we could work out a way of communicating off here - I'm friends with quite a few ppl on here.

  • My appointment is with prof Durham at 9.30

  • Great timing! I'm trying to find and add you on FB but it's chosen this moment to go weird.

    Hmm can't seem to find you - profile pic or cover pic with three kids? I keep finding teenagers who aren't you; found some kids with a Chelsea banner but there are more than three of them. Are you friends with anyone else on here (can use AUK names)?

  • Dreadful pic of me & kids on a rock!!

    I'm friends with Charlie warlie!

  • Hello Elliew!

    Another Brompton-ite here, I'm not there til after that week though.

    Have a good meet up. Anyone know what the coffee is like around there by the way?

    P.S. You might want to edit your details as the forum is viewable to all

  • Im here, im here, im here lol i saw my name!! I must be a VIP!! Joke!!

    And Philomela, spongebob pjs should be made compulsary!!

    And dont worry about the weird surroundings of the hossie...my local are used to strange people like me, i always end up hanging out of bed and being poked to get back in...double at home...single in costa, not all that good


  • yes Charlie, you are lol! Thanks for connecting me with Ellie.

    hehe I am not the Spongebob fan you are, and I like my nice Jasper Conran PJs, very fancy lol but don't often get to show them off.

    Am told the worst I do is cough in my sleep which hopefully they're used to. Don't want to start snoring...just hope no-one else does. Still, I have slept in a tent in a cold garden with 2 other ppl (3 of us in a 2-person tent) with someone's elbow in my back!

    EDIT - TJ, re coffee, there's a nice cafe just across the road from the Fulham wing - I went there with another AUK member when I visited her.

  • Old rules? I hope they're old lol - not being allowed to stay in bed in a hospital?! Are you meant to get up and do push-ups I wonder?

    Not that I was planning to stay in bed, as I'm only in for tests - would like to find the list though to see what else is on there.

  • Good luck with your testing time at RBH. I hope after the tests you get some answers to your condition so that you are able to get better action plan in place.

  • Ooooooo perhaps your mission (should you wish to accept it) could be to find them, make a note and post on here for our entertainment?! Lol!

    Hope it goes well for you and don't worry about snoring, most of us do even if we protest that we don't! ;-)

  • Hiya

    Have done this myself. The tests keep you busy most of the day. It's not a sickly ward, so to speak, the nurses are there but I had a schedule so just made my way to each test.

    A couple of us even went for a walk in the evening as long as you are up to it. My mobile signal was rubbish but it was a few years ago. Food is okish for hospital food. Just take comfy clothes, joggers and t shirts etc.

    All the best, not far from Fulham road so shopping a plenty :)

    Lisa xx

  • Thanks everyone!

    Angelica - hehe I'll try lol. But might get in trouble for wandering round taking pics of notices... Re the snoring: I think I'll be happy if only one person snores, and it's me. Seems the best way to ensure I get some sleep ;)

    Lisa - thanks for details! My plans to meet ppl may be too ambitious but will have a go. tbh every time I ring them I hear something different, so have no idea anymore! But I'm not really doing the 'usual' difficult asthma protocol, it was a short one that got extended because of timing of tests, so wasn't expecting all the tests others have had.

  • Hi Philomela

    I too am in the Brompton from Weds midday until Friday midday!! Will see you there.

  • Great! Will you be in Lind, or another ward?

  • Thanks me, that poster with the old RBH rules sounds intriguing, any other similar features to look for?

    Philomela and valj, hope your stays go well.

    Anyone there in a couple of weeks?

  • Hi Philomela

    The staff there are lovely and always around, also if you have any questions which you don't remember when they come to visit you but you remember after, they come back and answer all your questions, its quite reassuring

    I am in Lind Ward on Friday if you are around and would like to meet up for a coffee


    Hi TJ

    I am always in and out of Brompton,

    when are you there - maybe meet up for a coffee?


  • Hi Nimz,

    Thanks! I'd love to meet for a coffee but sadly I'm there Mon-Thurs so won't be around when you are. Don't suppose you're around on Wed 15th by any chance?


  • Good luck at the brompton this week, thinking of you.

    Hope to meet you next week!

  • Hi Philomela

    I will have to let you know once I been seen on Friday, as it changes so often

    Good luck for this week


  • Good luck for this week.

    Please let us all know how you get on.

  • Thanks guys! Elliew, yes hoping to see you next week, and maybe Nimz as well! Asthmagirl, shame we won't overlap.

  • Nimz, I'm there week after next Tues til Fri.

    Philomela, hope your stay goes well. Is it back on Wed for results?

  • Thanks TJ!

    Yep - next Wed. eeek. Why am I getting nervous about the stay for tests when the results bit is clearly way more scary? ;)

  • Had a phone call from RBH today saying that they want to admit me and it looks as though I will be there in the next few days.

  • Ooh, well I'm off tomorrow so don't know if we'll overlap but hoping to see you!

    valj, are you still coming today? What time do you get here? I'm in rm 3 atm, though maybe will be moving.

    Going ok so far. Yesterday was absolutely knackering - an hour of LF tests because of my appalling technique, then exercise test with me looking like something out of Star Trek (being a Trekkie geek, I cracked up when I was standing on the treadmill with all this gear including a headset, tubes etc and they asked me to do the Borg Breathlessness Scale). Rest of the day just flopped on bed, managed to meet friend for coffee but that wiped me out.

    Still waiting for the physio...was meant to be Mon at 2. Am beginning to wonder if she exists lol...

  • Hi Philomela

    I wont know till Friday whats happening about next week

    is there any way I can give you my mobile number privately through the forum?

    hope everything works out well

    take care

    Nimz xxx

    Hi TJ

    will you be around on the 22nd August?

    I am going to be in outpatients so will be around majority of the day

    take care

    Nimz xxx

  • Hello Nimz,

    Private messaging is not available on the forum so to answer your question to Philomela, unfortunately no.

    Are you on Facebook by any chance and friends with anyone from here?

    I am indeed there on the 22nd (or should be unless they cancel which seems less likely than local). Coffee always good for me.

  • This is awkward - sorry Nimz! As TJ said, I'm on FB though and friends with ppl here.

    I'm home now, and not sure what to think! They are really lovely there and didn't make me feel like an impostor. Also I met up with valj which was lovely and we had some chats.

    However, I feel a little like I'm going round in circles.

    They did find some VCD-type narrowing with exercise, though was told not major. However, the %^&*O histamine challenge and other tests (loads of blood tests!) were normal! Except that they gave me a Ventolin neb afterwards and I did have a reaction there ie results went up. Also read on Heartlands site (where I went for more info as RBH's is not forthcoming on this) that a negative one actually doesn't have to mean you don't have asthma, so a bit confused.

    I do have the impression they're trying to pin everything on the VCD and while I'll be very glad if that can be sorted as I think it will improve things, and I know there's overlap with asthma symptoms I'm not sure it's the whole story as I can't think why asthma meds would work for VCD - and they do help, they just don't get rid of enough! Was also asking about why my chest would be tight with humidity etc, and reg suggested dysfunctional breathing...but physio told me while I do have some upper airway issues (which makes sense given other stuff) I actually breathe well, good pattern etc....so can't really see that this makes sense (plus again, why would meds work).

    Anyway sorry for more rambling lol...I think I've got somewhere but am still a bit worried about follow-up on Wed and asthma tests being ok as while this should be a good thing, I don't want to lose my medication - I really do think it helps and that there's a combination of things going on not just the VCD.

  • Hi philomela,

    Normal test results do not necessarily mean they will take away your medication. I had normal mannitol challenge results and lung function results (30% better than average) and although there was talk of trying me off the meds when the meds made a difference to my symptoms this line of thought was abandoned. (I know you are aware of all of this but just to reassure you.)

    It is interesting there is a chance of some VCD as if this is as well as asthma it may explain why you only have some benefit from asthma meds. (I know very little of VCD only what I have read on here.)

    Even though I 'failed' all of the tests for asthma, I think for a select few they are not hard and fast methods to prove or disprove asthma or else the consultant I was seeing would not have put 'suggestive of asthma' on my final GP letter.

    I hope this makes sense as I didn't mean to write quite so much! xx

  • Thanks JF! A reminder is always good from another 'weird case'.

    I think it makes complete sense, as there's clearly some kind of VCD component, that it could be making an asthma component worse and that's why the meds aren't working - they said it could do that. I'm just hoping they don't try and pin it all on the upper airway issues, as some bits of it really are very like my (completely undisputed) childhood asthma.

    Not sure what my cons at St Mary's is going to say as he was v sceptical about VCD but did think I had asthma - eventually! Maybe he'll keep on with the meds - but hope like your cons, JF, that they decide if it's working even a bit there must be something for it to work on and let me change. I would like them to consider it as even when the VCD is controlled there might be room for improvement.

  • The fact that you have had some improvement on the asthma meds hopefully means they will leave you on them whilst also focussing on solving the VCD symptoms.

    I have to admit to hate being a weird case but I guess somebody has to be!! It does add more stress and worry to the whole situation so I completely understand your thinking.

  • Thanks! Yes it does - that's what I told the psych person (also that you guys are all great and stop me going round the bend lol), that it was more stressful at times not knowing what was going on, though obviously having severe asthma, even if you knew what it was, would also not be much fun.

    I am open to the VCD and would definitely hope to see an improvement if they're treating me for that as it seems much more treatable. After looking it up on the National Jewish Health site (one of the first results - they're like the RBH/Heartlands of America), I can see why they were saying my triggers could be VCD - there are SO many overlaps (here it is for anyone else interested - I know others have had this raised).


    I still have a couple of questions for them though about how it works with being SOB/tight-chested when NOT exercising ie after overdoing it etc and after trigger exposure (as video showed throat was fine before and after).

  • Hi philomela,

    Sounds like a lot to think about!

    I've looked at that.website and its very informative.

    I know my cons said that he suspects I've got VCD alongside my asthma but that its the.VCD that's been causing me all my issues over the last 8 months.

    Good luck for results day.


  • VCD is my area so here goes!

    VCD can make asthma worse ie you have a vcd eposide and triggers the asthma and can work the other way...

    Exercise isnt the only trigger to vcd and thye are very much a indervidual thing..

    asthma meds, atrovent has been shown to be effective for vcd management, and the areosal spray inhalers tend to irrate the vocal cords more than the dry powders such as symicort. Steriods tend to make it worse also.. so the weirdness over meds can be explained through that...

    Allot of VCD managment is to be ease the feeling of breathlessness so if you feel a med is helping is has a knock on effect on vcd and controlling asthma is one of the things in vcd management as well...

  • HI Angelica,

    Thanks! That would be great for you if it was as it seems it's way more treatable...crossing fingers.

    That website is great esp as it doesn't, unlike some of the others, suggest that it's all about anxiety. Must be a nightmare to separate from asthma as they have so much in common: hope my cons is happy to answer lots of questions.


  • Most people once reflux is under control a course of peach therapy is enough to control and cure it!

    You do learn after a while the difference between them. I can tell by how my cough sounds the pitch of my wheeze or voice changes but how it effects people does vary..

  • Sorry, Bird, didn't see your earlier post - you must have posted it just as I was replying to Angelica!

    Thanks for the info - I am vv confused though as had understood that asthma meds in general are not helpful. Atrovent does help me so maybe it's helping VCD instead of/as well as asthma, but the Symbicort actively helps me rather than making things worse - it just doesn't help quite enough. Or did you mean pred? Because that does nothing at all!

    I'd be having physio but think they're very expert there with this condition. Happy for the management to be alongside asthma management, but I've read that while asthma and VCD are often found together they don't have to be, so just a bit worried they may think I don't have asthma at all and so not do that side of things.

    I can see from the link I posted that some of my 'asthma' triggers might be VCD...or might be both I guess - must be possible to have one trigger set off both, as there's so much overlap?

    Last time I looked this up I was sceptical about having it because they kept talking about 'attacks' as in acute ones, mimicking asthma - I don't have that sort of attack from whatever cause. But now looks like it doesn't have to be acute attacks?

  • Hi Philomela

    I'm another weird one, all my tests were normal including the methacoline challenge, but my consultant said that due to my history eg hospital attendance loads of chest infections etc that I probably do have asthma but that it just wasn't that active at the time of the tests. They kept me on all my meds but tried to slowly reduce my symbicort but every time they did I got worse again so they now just keep the dose high.

    But I really do no how you feel, I just couldn't believe that I had all these symptoms yet normal tests results, but I guess there are always going to be people like us who are unique!


  • Thanks Lejaya, it is good to hear of someone else in my position! I've not had the hospital attendance, but do seem to get more colds/chesty things which knock my control right off (though perhaps VCD does that too) and have a personal and family history of asthma (loonngg family history, my mum's side is riddled with it), so I hope they look at the big picture and take it all into account.

    My discharge letter did say for GP to keep prescribing asthma meds, will just have to wait till Wed to see if they intend to keep that going.

    I will have no nails left by then lol.

  • sorry, just found your post and i feel i've come a bit late.

    but i agree with the feeling that, sometimes they try and pin difficult problems on dysfunctional breathing or VCD (for some reason its a little bit irritating isnt it?)but i wouldn't worry too much about it. but what apparently happens with asthma when its bad for a long time is that you get so used to breathing in a funny way that you do it automatically (apparently i am a prime example... as i used to have a resp rate of 30 at rest before i had lots of physio)

    and i shouldn't be worried about your meds as they most likely they wont take them away from you(even if they do want to take you off them) tailor them down slowly.

    however i can understand where the worry about the medication comes from.

  • Philomela meant to be pred dosnt help.. symicort out of all the inhalers is the one that helps the most but generally dosnt make a vast difference

  • Hi Philomela

    I will not be in Brompton till the 22nd now, good luck with your results,

    Nimz xxx

    Hi TJ

    I am on facebook but don't have anyone from this forum on there

    Any suggestions how I can add you as a friend?

    Nimz xxx

  • Nimz, hope Friday was ok. Are you in clinic on the 22nd? I'm on the same ward Tues til Fri so may see you at some point - not sure yet what's in store for me.

    Not sure about facebook, will have a think as best not to publish personal details here.

  • TJ if you posted something on the AUK Facebook page then Nimz could identify and add you then you could delete it. Then you wouldn't publish personal details on the forum....

  • Thanks wherrers. However as forum moderators we have nothing to do with the AUK facebook page - that is the digital media team.

    Also, it is open to anyone not even logged into facebook so not much different to publishing personal details here.

  • Hi TJ

    yeah friday went well - had my xolair - made a world of difference

    got an outpatient app and my final xolair trial on 22nd so will be in Lind Ward

    what ward are you in?

    Nimz xxx

  • Glad Friday went well for you Nimz! Hope to see you another time; think I'll be coming in for some physio so might see you then - if you manage to meet up with TJ and connect on FB then it'll be much easier for me to find you.

    Glad I'm meeting up with elliew on Wed, will be nice to have something to look forward to! I know it's probably a bit OTT and I moan a lot but am still stupidly worried about my appt and whether they'll answer my questions!

    Btw, Bird, realise you mentioned reflux...don't think I have that! Though am aware it can be silent - they asked me about it and I said I didn't think I had it then they left it at that, but as I know some ppl didn't even realise there was a problem am wondering if I need to add that to my list of things to ask about... hope they have a lot of patience and don't get fed up with me asking so much, but am still confused!

  • Nimz, I am there too so should see you at some point. How long may your appt and Xolair take? I do not yet know what is planned when for me.

    Philomela, it is possible to have silent reflux so yes may be worth asking about on Weds or perhaps your GP. I was asked about heartburn which I didn't have. Eventually started on meds by ENT but looking back I had gradual onset of other classic symptoms. There is some medical debate on whether proton pump inhibitor (PPI) and other medications help with asthma and reflux which are fairly common together. However, these have certainly helped myself (GP agreed too) and others in previous posts here. Patient.co.uk and NHS choices websites are good for health information generally.

  • Thanks Philomela

    hope wednesday goes well for you, I know how scary it is waiting for the results and just not knowing what is going to happen, good luck with the results, they will definitely answer your questions, another thing I have found helpful is getting the clinical asthma nurse specialist (markus or suzie) e-mail address as you can e-mail them about any questions and they either e-mail or call you back by 5pm the very same day.

    TJ - my xolair is roughly 3 hours and as for my outpatient app - I have no idea as this is the first time I am being seen by a new department (referral from dap in march) but I will be in Lind ward reception at 9ish to get my name down for Xolair and hang around for 15 minutes before i go down to outpatient clinic and then back to lind ward by hopefully 10.30 latest so see you either at 9ish or 10.30ish???

    you'll find out whats planned for you on your first day, its really good and the nurses keep reminding you so its not too bad - dont forget to take your laptop/tablet as there is wifi available

  • Thanks Nimz! yeah it is pretty scary - am not concerned they'll be bad ones or anything, it's more knowing what they plan to do with me and whether I'm going to end up back where I started! I do have Markus & Suzie's emails - emailed them before I went with meds question - but I didn't meet them when I was in so a bit hesitant to ask random questions.

    Just to add re Lind, for TJ: yep they are good at reminding, though sometimes they do things like deciding they want 6 tubes of blood out of you 5 mins before your challenge test lol!

  • Philomela don't feel hesistant, they are so busy, it is unbelieveable, but they do get back to you & they are so understanding, did you not meet them on the ward round they do on friday mornings? I have asked the stupidest questions and they have always been so understanding and extremely helpful

  • aha maybe that's why! For some reason I was in Mon-Thurs not Tues-Fri - maybe because I wasn't really doing the DAP. As it turned out I didn't really need to be there on Monday so pity I missed the ward round.

    So I didn't meet them, but may have seen them in passing, not sure. Wish I had done as they did sound lovely and replied v quickly to my question! Guess it depends if they still think I have asthma - if not then it's not really their area (frustrating if not because you don't get specialist nurses for 'random symptoms plus VCD' lol).

  • I'm sure you would have seen them in passing, and if you asked the nurses that you wanted to see them, then they would have come to see you as they are very good at that.

    Well at least you'll get an answer as to what it is, thats one thing that brompton is very good is diagnosing us 'weird asthma' patients, hehe, lol,

    I really hope you get the results you want xxx

  • Thanks Nimz,

    I am downloading plenty in preparation on my (rather fetchingly coloured cover) tablet. I did see wifi mentioned on the letter. Good to hear that the ward staff remind about tests, thought I may save it all on phone too.

    Philomela, I agree the CNS are good at answering questions and easy to talk on the phone too even though as Nimz says they must so busy - I haven't met them either yet.

  • The wifi mostly works fine, but you need to get the password/username off reception. Or off me, unless it changes regularly. :)

    tbh I found things change a lot; also I thought I'd be visiting different bits of the hospital for appts but a lot of the time, unless it was equipment-based, they came to me anyway! Wasn't really expecting that given it's a minimum-dependency ward and I'm hardly immobile - but I was expecting eg to have to go to psych as implied by my letter, but she came to my room!

  • Nimz et al, in regards to facebook with the absence of the private messaging system, this has been discussed. Details could be posted here on the forum e.g. link to page or username etc to search. Could be duely edited in the event one would rather these do not remain in the public eye.

  • Hi philomena!

    Still up for coffee tomorrow if we have time?

    Can't say Im looking forward to my appointment, am getting more nervous each hour, at this rate I will be a complete wreck by the morning!!

    We can be nervous wrecks together before we go in!

    Ellie xx

  • Hi Ellie!

    Absolutely! Your appt will probably be longer than mine (and mine is meant to be a bit before yours, 9.15) but hopefully we'll see each other before we go in and can arrange something for afterwards. There are photos of me on FB if that helps for you to find me - I'll try as well as I""ve looked at your profile pic, but am a bit rubbish with faces unless I know someone already!

    I look forward to the company - I'm already a nervous wreck too and I've got more than 12 hours to go! I'm just waiting for the same kind of appt that I've had a few times before where they send me off to physio and get rid of me...But they are still lovely, so am sure your appt will be fine, will probably be lots of them getting to know you in that interesting NHS way lol.

    Oh and here's a joke I remembered and found online, just to take your mind off things:

    What Lies At The Bottom Of The Ocean And Twitches?

    >A Nervous Wreck.

  • Good luck tomorrow and hope it's not too long a wait being early on in the morning clinic.

  • Good luck for tomorrow Philomela, I'll be thinking of you xxx

    TJ - you can search for me under Nimz Parmar and I have a unique picture as I am sitting on a throne, hopefully you can find me, as you are a moderator, could you not access my details and search for me via my e-mail address? xxx

  • Good luck for tomorrow Philomela.

  • Thanks Nimz but no luck. Worth checking how your privacy settings are for people to search for you (under Privacy settings > How you connect > Who can look you up using the email address or phone number ...).

    I like the idea on another post of having something (e.g. bright of a particular colour) to look out for.

    We as volunteer forum moderators are not Asthma UK employees and as such have no access to personal details.

  • I couldn't find you either Nmz, hadn't thought of that!

    So...just come out after chasing non-existent physio referrals...the Brompton admin strikes again!

    After all that VCD thing, it seems I don't have it - there is some mild stuff going on there but he didn't think it was really doing anything. He said yes, I have asthma but that judging by the test results it's well controlled so no change of meds. VV happy I can still have them but not entirely convinced by the good control right now. I did say colds really throw me off and he said next time I get one, I should contact one of the CNSs so they can have me in on Lind day unit when I'm bad to see what happens, rather than just on what seemed to be a good day.

    Otherwise intensive physio including exercise in their gym every 4 weeks plus things to do at home, as it seems my CO2 was way down in the exercise test and my breathing when exercising is therefore screwed up. Clinic in 3 mths.

    Generally better than I thought, and I'll definitely do what they say and imagine it will make a difference (also happy they are not abandoning me which was something I was worried about as previously I've been left to it however much I struggle between appts). I will say am not quite convinced by the triggers thing; my breathing pattern is fine when I'm not exercising (at least 2 physios and Dr MG today have said they can see that), and when I asked about triggers like humidity he said probably upper airway - but forgot to ask so why does the asthma medication help it then?! Maybe when I've finished the physio, if still having symptoms then it will be easier to see where they're coming from. And can ask physio maybe.

  • Gosh Philomela,

    How flexible do you need to be hearing yet more info about your breathing!! Did they say why you have low CO2 when exercising? Or is that down to incorrect breathing pattern when exercising? xxx

  • From what they said, I think it is incorrect breathing when I exercise which does that; they said after the test they could tell I was breathing more than I needed during it and that they see it all the time there with asthmatics. But somehow I can do it just fine when not exercising! Would assume there is maybe some asthma there too as that's always been a trigger, plus if I overdo it I'm worse afterwards and he said the CO2 being low only lasts about half an hour afterwards - just that exercise tolerance is lower than should be with the asthma.

  • It is all very interesting isn't it? I wish the hospital where i was treated had a treadmill test. They only had a 6 minute walk test which I found a complete waste of time and not at all relevant to real life physical activity.

    RBH do seem very thorough and the fact that they want you back when you have a cold too.

    How are you in this warm, humid weather? I have a constant cough and very mucousy (sorry, tmi!)

  • Sorry to hear you're doing worse, hope it clears! I'm actually not too bad...or wasn't before the incense this evening, though bit of a tight chest (I am so not convinced that is upper airway as it always eases with inhalers and has got a lot better since the Symbicort).

    Yep re exercise test and they specifically said, 'take your meds before you do it, because we want it to be as realistic as possible and to see how you manage and from the sound of things you won't last long enough without them to get any idea of what's going on'. They even asked me which would set me off more, treadmill or bike!

    Doing a lot better than my local, where although the cardiologist had seen that I got SOB just walking into his room (when I was a lot worse), he decided to order a cardiac treadmill test...and they wondered why I only lasted for 3.5 minutes. Not really a good use of their time, I think, as I blatantly, whatever the reason, was not really capable of exercising at that point!

    I'm pretty excited about the physio exercise sessions as I've really been wanting someone to show me how to get past not being able to exercise properly - like Dr MG said, no point telling me I don't breathe well when I exercise but need to do more exercise, unless they actually show me HOW to do it! I doubt I will be saying this when the physio (their get-up reminds me horribly of school PE teachers) is torturing me on a treadmill lol.

    Oops that turned into a lot longer than I meant - wonder if they can cure my tendency to ramble...

  • Hi philomena!

    Am pleased you managed to sort out your physio sessions, hope than they can continue to improve things for you.

    Was lovely to meet you yesterday so sorry I couldn't make coffee, good thing you didn't wait for me , I was in with the doc for nearly two hours!

    I've got to go in next month for dap tests. The doc wanted to admit me yesterday after listening to my chest, and checking my sats, and peak flow. Got yet another infection, so will be most likely of to costa in the next couple of days.

    Thank you for staying and chatting with me before I went in, I was so nervous, really didn't need to be, they are lovely in clinic aren't they?

    Pleased your appointment went well, it's a lot to think about isn't it? I'm trying to get my head around what I was told, basically they may not be able to do much for me as I am so brittle, but they will try.

    The doc said there is no miracle for you! Charming!

    Take care xx

  • Don't change your rambles Philomela, I always enjoy reading them!

    I'm looking forward to the fresher September weather. (Sorry all summer fans.) I feel a bit in limbo at the moment as I have a couple of days with just 2-3 puffs ventolin and then back to 4-6 puffs a day for a week. My ventolin does work which is still good but not always just 2 puffs, my spacer is my friend right now! Winter is my best time so I really want things to settle down and improve so that I can think about reducing my Symbicort.

  • hehe thanks JF! Hope you can reduce soon and improve, remember you said you were having a bit of a blip.

    Ellie, sorry I didn't ask how yours went - I was going to on FB then forgot! 2 hours wow, did they do any tests as well? Not good re infection :( but hope it's a short stay. I really enjoyed meeting you too, glad we could chat before (helped stop me being so nervous too!) but like you say they are lovely - who did you see in the end? I do get the impression they should be able to help a bit from what others have said - even if not stop you going in, maybe make it less frequent.

    Although I'm very different I get the impression they may be able to say more, and perhaps do more, after the DAP tests - I found not much happened at the first outpatient as he hadn't really had a chance to look through everything and really get a handle on what was going on, so they may have a much better idea during/after your admission - they seem to keep thinking which is nice! Have they said when that will be?

  • Heya Philomela

    thats really good news that they know what they are working with

    if you do get physio referalls then you will have to let me know as I will probably be around somewhere in Brompton, hehe

    Heya TJ

    I have changed my settings so hopefully you can find me and we can meet up on wednesday

    take care all


  • Hi Nimz,

    Thanks - yes, I think they mostly do, though for me I'd say there are still some things I'm not sure have been resolved yet - but will see what physio does.

    I've added you on FB as well - my name is nothing like my username on here, first name begins with E - just so you know I'm not some random person (I've been getting a few requests recently from people I don't know, not sure why, so I might ignore one myself from someone with no mutual friends, and not sure if you've connected with TJ yet.)

  • Hello Nimz, that's worked, thanks and may see you there Wed.

  • Hi philomela

    would you like to be my friend on facebook? I think us weird ones should stick together, I have more lung function tests coming up which will probably be negative, also having allergy tests and consultant said if they are also negative im to have a bronchospy - oh joy! so im pretty much expecting to be told it cant be asthma, im dreading the tests!


  • Hi Lejaya,

    yes I would! Are you friends with anyone else on here to make it easier to find each other? I'm friends with quite a few ppl including Nimz and TJ, if that helps. Initials are EA.

    When are your tests? Crossing fingers for you, I hate that feeling when you think you'll be back to square 1... so hope they find something helpful! Also I hate LF tests, are you really bad at doing them like me? If you do need a bronch they're not too bad - I had one and it was fine even though the sedation didn't take so I ended up watching! Bit frustrating but not a bad experience.

    I feel a little further forward after my tests at RBH as I'm getting some help with the exercise, but also a bit confused.

    Got letter which says some asthma etc but doesn't explain it all. So they think I have it, get to stay on meds yay, Really hoping physio does make a difference but if it doesn't do as much as they say it will, I hope they'll be open to messing with asthma meds - they really help me get good control some of the time now, but keep getting thrown off every time I step down to 'normal' Symbicort dose, by catching another cold, or moving house and carrying boxes.

    Also confused because they said VCD not an issue, mild narrowing of vocal cords but not really enough to cause symptoms, but then saying possible upper airway dysfunction causing symptoms - but when I google upper airway dysfunction I get loads of VCD results! So bit confused about that...not really sure what they mean. Might have to ask physios about it.

    Also had slightly low KCO (gas transfer) result but seems they don't think that's significant as I don't have a clot or heart problem (always good to know though I nearly had to have another VQ scan).

    Hope to see you on FB!

  • Hey philomela, i found this, is it of any use for you!?


    Hope the link works, if it doesnt, let me know and ill send it via fb!!


    Ps i just found the following also


  • Thanks Charlie! It does work...still confused though lol. Don't think that's me as it keeps going on about no previous history, when I had asthma as a kid. But an interesting read - might be helpful to ppl on here with occupational asthma as I got the impression that was kind of what they were talking about but using different words for it.

  • When i googled it, i only had one page for VCD, the rest were of lots and lots of different things. Dont qoute me on it but i think i put in ""what is upper airway dysfunction"" and loads of links followed it!!


  • ah right - thanks, will try that! The search I did seemed to get up loads of VCD stuff so I must have been doing it wrong - there must be some info out there!

  • There must be dr google know everything...if not ""the AUK nurses should know"" -a bit of roll reversal there lol, im sure thats your line i have just stolen ;-)


  • haha you have stolen my line! If they were a company I should get paid per call as an affiliate lol and I'd be rich ;) Might have to pester them again...reckon they're like the Delphic Oracle (but a lot clearer and more helpful - the oracle used to give people deliberately vague answers that you could read anything into!)

  • well i had some blood tests on wed for Ige and a few other things (can't remember what!) I am also being sent for lung function tests and allergy tests. I think I am ok at doing them, I just find them really tiring.

    The reason I am having them is because I keep getting itchy lungs and throat etc and my consultant is convinced I have developed an allergy to something, Im not to convinced due to all my previous allergy tests being negative but she still wants to check anyway. antihistamins also help which is very strange!

    I have also had loads of chest infections in the last few years which is why they also want to do lung function tests, but if all my tests are normal I guess they will be looking at other things. I have also recently developed quite bad reflux so they will probably just blame everything on that!

    I am friends with roxy from auk, my initials are LLC (my first name is Laura) I am wearing a wedding dress in my picture and I am standing next to my hubby! hope you find me


  • EDIT Got it - thanks! Nice pic!

    LF is really tiring isn't it? That's why I find being bad at it so annoying as you have to keep on and on doing them until you get some sensible results ugh.

    Crossed fingers they get somewhere with you.

  • Philomela,

    I also have a lower than expected KCO reading. The consultant said he thinks this is contributing to my SOB. He also later said he believes some of my blood vessels that should go into my lungs bypass it altogether. He was speaking about my low KCO reading at the time. I know in my 20's when I saw the first consultant she said my heart and lungs don't work well together which got me into walking lots to try and make them fitter.

    Also, I am stuck on 3 puffs twice a day of the Symbicort right now, am looking forward to a time I can start reducing it, maybe you are needing the 3 puffs twice a day. It might be worth mentioning it next time you are seeing someone and see if they OK it for a while. If you get more symptoms when you drop it to 2 puffs twice a day, in my book you need to up it again. You have had your symptoms for so long that I am sure it will take a long time therefore for everything to calm down. (That's what I keep telling myself lol.) It is nice to hear you are getting some control at last though!!

    Lejaya, I am also a weird one and definitely think we should all stick together! There aren't many of us!

  • Thanks JF - think I remember you saying that about your KCO! Slightly frustratingly, they haven't said much about what it means or whether it's contributing to symptoms; letter says cons 'notes' that I've had three normal echos and a 'previously normal' VQ scan which presumably means no clot or heart issue, but they haven't said anything else and I forgot to ask. It doesn't seem like a big deal or they would have, but I'd like to know.

    Re the Symbicort: as I have the emails of the CNSs at RBH and been told I can contact them, I did email on Thurs and ask if I could try 3x2 for the moment. No reply yet, but then I imagine he's horrendously busy and of course now it's the bank holiday weekend. Also not sure whether he can just say yes or no or has to run it past the consultant.

    I can get control on 2 (big improvement over before, definitely!), but when they tested me I'd been on 3 for a bit - and it seems hard to actually keep control on 2. In my mind control should mean you can weather triggers better, not get thrown off by something like moving house! And I don't *think* this is just the bad breathing during exercise because I was ok while doing it, it was later on the SOB hit.

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