Does anyone on here see a general resp. consultant who isn't down as having a specialist interest in asthma? And if so, how do you find them?
Just found out who my appt on Wed is with, and it's a cons who's listed as having interests in lung cancer, adult CF and COPD - but not asthma; there are other consultants who have an interest in asthma but there was no way for me to know when I booked who it would be with and my GP seems to have put me down as general resp. instead of asthma.
EDIT as the rest was written at the bottom point of a mood swing. I am very easily plunged into irrational despair and ranting atm lol...neeeeeeddd slleeeeeppp. Thanks for the really helpful responses so far, I am feeling a lot more cheerful about it now though still crossing my fingers she'll be a good listener.
I was seen by a resp consultant then sent me to Asthma consultant and now under the hospital severe asthma unit team.I go every 3 months and phone contact anytime.When I go tomorrow I see the asthma team and the asthma consultant is in another room and can see him if the asthma team think I need see him ,but they can alter meds etc and did me a asthma plan keep with me and will change it if needs altering.They ask me if ive needed steroids over the last 12 weeks since seen them and how many courses and how many days and if had antibs and how many days.They send my doc a report and i get one also in the post.Does your hosp have the a severe asthma unit and team ? X
Thanks Glynis! Hmm so maybe I will be sent to an asthma one? I live in hope - just worried that if this one isn't familiar with non-classic sorts of asthma she's just going to faff around for months doing tests I've had before and questioning the diagnosis again. I wouldn't mind if this were the first time but this is my third referral ffs and it seems like every time I think I've sorted something it gets changed when I'm not looking and I'm back to square 1.
They might have a severe asthma team; not sure but I'm not actually severe, just awkward and not exactly classic. I need someone who's going to realise that and can maybe try out some different medication. (It's St Mary's Paddington btw if anyone knows them).
My asthma team put the steroids 5mg and steroids 1mg on my repeat as they know me well now and it gives you the control over your asthma without worrying to get in the docs or walk in or A n E and thats working great and just see my doc if got chest infection.The last 12 weeks had 7 days Pred and 7 days antibs week 2 and 4 weeks pred that was 2 weeks 40mg then 2 weeks reduction. X
I have seen both a general resp conultant and am now seen in a difficult asthma clinic (I moved 500 miles). I preferred the general consultant - I think this has much more to do with getting on well with him as a person, he was also much better with my atypical asthma. How well you get on with the consultant can be just as important as whether they have a special interest!
I've heard some good things about Mary's so hopefully it will go well with you. Don't expect miracles at the first appointment though.
Thanks so much Bryony, that is really reassuring to know you got on well with yours and that they understood your atypical asthma! Guess it will depend on the cons then but it's good to know there's a chance she could end up being great and understanding. In fact the first cons I saw was a top asthma guy and he was useless, for me at least! I guess I am just hoping for someone to keep an open mind and at least try their best and look at all the options without trying to shove me out the door asap.
Sorry for more ranting everyone - my moods are all over the place atm and I'm getting very easily upset - think it's lack of sleep (sure everyone knows what that feels like, prob. more than me!) My recent drain crisis has not improved my mood either...at least that seems to be sorted.
My son's consultant is a paediatric consultant, not asthma. But he's been fab - very knowledgeable and really nice.
Glynis I don't mean to disbelieve your claims about the asthma clinic but u told me your 1st asthma dr discharged you and your gp refered you to a new one last year.so the stories dont match up. and the story you tell is actually the same story I told you when you asked how I was referred to the severe asthma clinic ..
hi Gussypoo,I first saw my con in 2004 and under him a few months and put me on seretide and then back under my docs asthma nurse and then year or 2 later back under the hospital under consultant and then on to severe asthma team that run a clinic at the hospital along side the cönsultant.Why would I lie ? No need to and all on my records.however would like personal detailed info go by pm as im sure you would also.
It ain't personal when u display it on the open forums glynis .... And that's where ur claim was . why I replied to it on the public forum and not in private !!!! Plus the story is definately different from the story u told me and others
Apart from putting dates down from my doc and con im not sure what to say. im not on trial here so I would prefure you not to reply .
Well don't use others people's stories as ur own and u wouldn't need to reply. Plus if it my story it ain't that private .... So no need to do private messages
I have never used anyones stories but my own so back off now and dont post to me at all.
No I ain't backing off when someone's uses
My details as they own.. And why post in public forum if not prepared for the response they generate
I have never used yours or anyone elses. Ive reported it to the moderators so leave it at that.
That's fine hope they investigate it. And see the lies u told.... I'm sure others will back up my claim how ur stories don't add up.... Don't worry I reported u also to the mods ..
Glynis - I'm afraid I agree with Andrew. In 2009 you posted that you were ""quite new to asthma"" and yet now you say you were diagnosed in 2004.
There have been other occasions
Why don't we get back to the thread that Philomenia started and let the moderators sort this out...
i have had asthma way longer than 3 yrs. The question Gussypoo was asking was ive used his details and how could I. Im no way as bad as him.I hardly post or pm now. This isnt even my post. the mods can look in to what i have said that has up set Gussypoo and i would be the first to apologise. Im not a nasty person and carnt see how ive hurt him. Leve it to the mods in a nice way.and they can point out to me if and how ive afended or hurt him if i have. Please now let the mods see to it. I would never hurt Gussypoo or used his info. take care and all will get sorted.
Were are not here to prove or disprove anyone so lets go back to topic pleas....
I started off under Severe asthma unit as was part of the hospital trust that was looking after my allergic side, now after moving have a local resp consultant who looks after me when ill but leave long term to the diffcult asthma service (different to where i started off) so cant give advice on general consultants starting off but the general resp drs Ive met on the wards have had a basic idea but dont have as up to date knowledge of studies.
I have both an Asthma Nurse and Resp nurse at the hospitals and very much prefer my resp nurse he's more understanding on the effects rather than the numbers. As for what the specilist intrests are around the hosp resp team they dont realy matter its just the area they keep up to date with and write papers on rather than what used to treating.
Testing.... Unfortunatly you might have to go through the whole testing thing again I have seen that doctors like to see the results at the time the see you rather than what is was when you saw the other dude and some like it so be done in own hospital incase its different, and when comes to bronchs like to see them themselves. However they will accept some I got away with not having to have allergy testing when moved, pH study or overnight oximetry as long as they get a copy of the report from the hospital (it always pays to get copies of every clinic letter or results of tests)
It is a shame we deviated from the topic. But then issues and side steps always occurred thro debate and discussion forums ... ESP wen we feel passionate about own feeling and wrong doing by others .
Cheers Bizkid, really helpful! Though wish I had thought to get copies of stuff before...oh well. I don't mind at all them doing repeat tests, just as long as they at least keep in mind that I have a life to live in between visits which symptoms can mess with and do their best not to forget about me (I know they can't control waiting times etc). Otherwise they can use me as a human pincushion if they want lol.
Mind you, that could be awkward if they want to do another bronch lol...seeing as I don't live in London! Will sort it out though if it comes to it. Got to say despite what I just said I am kind of hoping they don't want to do one of those challenge tests - I looked it up and have seen the number of days you are required to go without medication. I should think I will need SEVERAL cups of tea after that test, if it comes to it.
When I lived at home and was under Brum they did most of the big tests in a planned admission, the little ones they asked my local hospital to do. Southampton did allot of the tests in 2 visits as was part of a study too, but after bronch aslong as someone is with you generally dont mind how you get home!
The challange test isnt too bad, antihistamines none for a week which is the main one the long acting reliver is something like 12 hours but they always say if you need to take it take it but tell them before!
Edit- If GP has anything they can print them off
Hmm hopefully I can manage that - it's not a specialist centre though just general resp in London as I didn't want to go back to the locals after last time - wonder if the specialist places realise more that you prob. aren't local so arrange things on same day.
It's the montelukast that worries me with challenge test - thing I saw said 4 days and I seem to react very quickly to not having it! Not on antihistamines or LABAs, the montelukast is the one that keeps me propped up and I'm always very careful not to miss a day since the effects seem to be so immediate (compared with missing several days of Intal).
Southampton have been brilliant for me. They know I have over 100 miles round trip and usually arrange as many tests as possible on the same day as the consultants appt. Although it isn't pleasant having so many tests in one day it is good as i don't have to have as much time off work or travel as much as having them seperately.
Good luck!
sorry for taking this off topic again but Glynis, but to follow up on Fee's post, you did post on the 1st Sep 2009 that you were quite new to asthma, Um new ? you'd have been diagnosed 5 years by then. Based on that I'd call myself new to asthma but I don't and wouldn't by any means. Hope the mods sort this unfortunate confruntation between yourself and Gussypoo.
Now lets get back on topic again.
I went on one of the severe/difficult asthma trials last summer and I said I had concerns about leaving meds off for certain tests and they had said if they were needed you could take them, but to let them know so they could make the necessary adjustments in interpreting results or re-schedule as needed... If you are concerned have a word with them before you have the tests done...
If you have had recent x-rays or CT scans taken with previous consultants it is worth asking for copies of the reports as it will save you having to have unnecessary repeat ones and keep your radiation dose levels down.
I would also ditto what freejay said about Southampton, I don't travel quite so far and they schedule everything on one day and also co-ordinate with research centre. This makes life so much easier...
Sorry, should have asked is there a time of year when asthma is less of a problem? As sometimes they can wait to do the tests when you are less likely to have a problem with the asthma and then stopping the meds is not such an issue. Obviously if the tests are urgent then this is not an option.
I think the tests are theoretical atm as no idea what they might do, but if it comes to it then I will raise my concerns. Don't think time of year would work, I am not 'seasonal' (and still haven't got over the sheer bloodymindedness of my lungs disliking both cold and dry and warm and wet conditions lol!)
I hope they would be good like S-hampton has been with you guys, I just wonder if they will be, as a London hospital which is not a specialist centre...I presume the Brompton would sort things that way but perhaps St Mary's will assume their patients live in London. Still, I will ask; even if they can't do everything same day as the appt perhaps they will be able to help with scheduling several things on one day, and they can see from my address I'm not local.
Not sure if I can get copies of X-rays before Wed. but they always seem to decide a more recent one is needed anyway!
btw thanks for all your replies on this topic - it's been really helpful and reassuring to hear even though I am still pretty nervous about what they are going to be like - not the tests etc as have done most of that before several times, just if they're going to listen etc.
Phew, defo need to get back on track here.
Philomena, if you're looking at websites with lists of interests etc they can be out of date and also not reliable on who is actually good to see in person rather than busy writing academic articles.
You know my experience by now. Have seen a Consultant physician in respiratory and general medicine. Got on well in appts which helps as bryony said but letters didn't quite reflect what was said and there was some erm interesting statements. Anyway, lungs behaving for once and waiting referral letters. GP practice can refer to known/particular consultant or clinic, may be worth asking practice manager rather than GP as they may know on the actual process.
Agree that getting copies of records is a good idea & have got some of mine esp scans/xrays as interesting with my background. GPs can print off many letters if you were not copied in. I have had copies of spirometry done at the time. Some countries and even private hospitals in this country give more responsibility to patients for their own notes. Bronchoscopy is one of the scope tests I haven't had. Methacholine challenge was ok, not sure I was told to stop montelukast at all but then again they aren't very good at saying what to stop or even that spiro etc done at each appt.
It is so much more organised and easier to have almost a one stop shop approach with tests all done at the same time rather than months spent bouncing around local hospitals and consultants. Am also somewhat apprehensive about what will be said and how.
Good luck for Wednesday anyhoo
Edit to add: For info if needed and not already aware, to contact mods best to pm them as 'report this post' goes to webeditor (not sure how much input on the forums they have) not mods
I think the key is go in with open mind and show willing to do tests/treatment/physio etc..
Everyone has there own opinion of there cons and go in and make your own but give it time to change sometimes it takes time for them to warm to you!
Thanks TJ! Don't think time for copies before Wed. but maybe if they ask can get them. And if the challenge issue comes up will discuss - would be very hard to give up the meds (how much like an addict do I sound?) but at the same time don't want to stay on them and have them say it's not asthma again just because meds skewed the test - would seem a bit pointless doing it then really!
Bizkid, will def. keep an open mind - but they've got to meet me somewhere round halfway on this one and keep their own minds open. I'm happy to try and do what they throw at me as long as I feel they're trying to help and taking on board what I say; even if they don't agree I at least want to feel that they're receptive to trying new things and to getting a diagnosis/treatment that works if they don't agree with the one I've got.
Glynis to help and clear up the situation u claim in several of your posts dated 29/9/09 and 3/12/09 that your asthma started this year .... U even state that u caught it at Easter in one .... But in April of 2011 u state u had it for 4-5 years and then yesterday u say u had it since 2004 . The sums don't add up ........ That's just one aspect of ur post proven to be false hopefully the moderators will prove other claim about you using other peoples stories as ur own ....
Can we stop this unhelpfulness on Philomela post, she has come on her asking for a little bit of advice and support and she doesnt seem to be getting a huge amount of it and it is unkind. We can no critisise someone over thier posts when we dont know them in person to know what it is truly going on...sorry to have to post this but i feel it is uncalled for and we should go back to what this forum is good for and helping each other through their heart ache/troubles/acievments.
How would u feel if you saw a friend posting your details on a post and when you questioned it you got reported to the mods ... Would u not react in a similar fashion And if my memory remembers me right charlie ... U been guIlty of having arguements on other peoples post also ....
Thanks Charlie_Warlie! I have had some really good advice on this post and am feeling a bit more positive about the whole thing (thanks everyone!), but do feel in general this or anyone else's post is perhaps not the best place for this kind of argument or for accusations, whatever the facts or otherwise. PM might have been more appropriate (as was suggested) if it was going to happen at all.
I am in no way taking a position on either side of this but I don't think the forum is improved by this sort of thing; I've seen people say they don't want to come on here anymore after seeing arguments of this sort which is a great pity as I know I and many others have found it a fantastic place to get support.
I'm sure the mods will want to draw a line under this one.
Philomela when I saw an allergist (with an interest in asthma) at Mary's they were really helpful and accommodating as I had to travel a long way. I think quite a few people will travel quite a way to go there.
As Bizkid said, you need to go in with an open but positive frame of mind. May be taking a friend or relative might help? Good luck for tomorrow!!
Cheers Bryony, that's good to know that I wouldn't be the only one and they are used to making accommodations - I know they have a great reputation but wasn't sure how far most people would be travelling.
And thanks for the good luck - think too late to enlist someone now (and also, tbh, I hate having anyone else around when I see drs) but I have my trusty piece of paper lol...
Hi Philomena,
Good luck for tomorrow it can be nerve racking seeing a new Consultant and not knowing what to expect. My Consultant has a broad interest in respiratory medicine which include Asthma COPD TB and pleural disease. He is always open to discussion on treatment but does seem to be big on the asthmatics must wheeze thing. He did say recently I don't have to agree with him lol. They do keep up yo date with treatments and attend seminars on different subjects within their field. If you're not happy with the outcome you can ask the Consultant to refer you to a colleague who has an interest in asthma, I did this when my daughter was younger and was seeing a paediatrician who has an interest in gastroenterology, my daughter had chest problems. The Consultant was fine about it. I also make a record of the outcome of clinic appts and summarise at the end as my Consultant changes his mind during the consultation and it becomes confusing.
M sorry Philomela if I distracted any attention away from you and your post....and we all know how u don't try and argue either. But just look at happy news post... U tried to pick arguement with me on that or did u forget that . I ask was that done in a private message no was the answer
EDIT Thanks Flowerfairy! I'll see how it goes...hoping I don't get a wheezing advocate lol as they'll be there all day trying to hear one and frankly I have better things to do!
Gussypoo, I don't think trying to accuse other people of picking arguments on threads is helpful. If anyone including me has been doing it, then they shouldn't; it doesn't mean it's ok for other people to do it, or to have done it.
I also don't feel I was starting an argument on the good news post - and I'm not sure if this 'and we all know how u don't try and argue either.' was sarcastic? (I honestly can't tell as it's an internet post and there's nothing to help me out with tone of voice etc; I am not trying to accuse you of anything).
I think Snowygirl's good news is a fantastic thing and said so on her thread. I've already explained that I did not think you were picking on me with that comment and apologised if it came across that way or sounded as though I was picking on you personally. I wanted to comment in a general way on something you'd said and feel that open forum was perfectly appropriate for that as it was a general comment and opinion about recent posts on the forum, some of which are my posts. Your dispute with Glynis is a lot more personal and I don't think someone else's thread, or even a totally new thread, is really the place for it.
For reasons which have nothing to do with this being my thread, can we draw a line under this now?
Not picking arguement but responding to your post about me. I think I'm entitled to do so as it concerns me ....
I'm not sure why this has all suddenly blown up. If you have problems with a member, suspicions, or they make you feel uncomfortable, it is far better to PM one of the moderators to express your concerns. We can then look into it and deal with the matter. Publicly trading accusions like this doesn't make anyone look very good and a)detracts from a useful thread and b)puts people off posting on what is usually a supportive and helpful forum.
I'll look into this a little later when I have more time, as I'll need to trawl back through a lot of posts, but please don't perpetuate the argument any further on the boards.
Thanks,
CathBear.
I am assuming that you saw the consultant today and wondered how you got on... good news I hope... If I have got my days mixed up good luck for tommorrow
hehe thanks Malawi - it is tomorrow, but am sure I'll be back on here with an update. Hoping muchly it will not need to be a rant, but if it is I will try to cool off before posting lol.
I am sure no one will mind if you do need to have a rant tommorrow...
Just a note to say I've removed the off-topic posts from this thread, so hopefully it'll be a more straightforward read.
It seems tomorrow is the day for Resp appointments! Hope all goes well!
Good luck tomorrow Philomena and thanks also Cathbear
Thanks TJ, Asthmagirl and (belatedly) Angievere! And good luck also me!
grrrrrr just tried to print my summary and PF diary for tomorrow and of course printer doesn't bloody work! Typical printer, not there when you need it.
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