Just basically had a horrible clinic appointment at my local where the reg he didn't know any of my medications asked what inhalers i was on and i then had to drum it home that i was maintenance pred (trying to taper) and on tiotropium, formoterol etc with a combo of tablets. and was being looked after by the RBH. He didn't even write all of my meds down and couldn't stop raving about how great my spirometry was considering me and the nurse both agreed that it wasn't great 2.6 fev1 and peak flow 430 at midday and tried to explain that we don't use peak flows because it doesn't represent how my asthma is doing, and that it was midday so heck the readings don't mean anything as my asthma tends to be bad in the mornings and evenings/night..and that 2.6 is actually quite low for me at that time of day. He then went on to say that my chest sounded clear and crisp - considering he listened through my cardigan i'm assuming that my cardigan sounded clear and crisp not my lungs (my cardigan was quite thick) Also what bugged me is that he was wearing really strong cologne just seemed insensitive to do that in an asthma clinic as lots of people get set off by this (me included). He also seemed unaware of my asthma history and the fact that i've frequented ICU quite a lot over the past few years which worries me because these are normally red flags to look for and they were all in my notes.
All in all i feel that i shouldn't have gone to that appointment - was in a good mood and now i'm in a crappy one. but i suppose the fact that he was just ignoring 90% of what i was saying peeved me out the most.
Overall i'd rather going swimming in a shark tank wrapped in mince meat than have another appointment with that reg.
i know that i probably doesn't help that i haven't been getting much sleep with my asthma lately so i could be being oversensitive and overreacting but he still upset me a lot.
oh dear you sound proper fed up! Im curious.. why do you go to local hospital if you're care is managed by specialist centre? I only ask because once I was referred to Papworth and they took over my respiratory care, I stopped going locally as there was simply no point - for a five min appointment with a clueless doctor... I just go to Papworth now - saves the local hospital time and me the aggro!! LOL
You could always feed back your concerns to the consultant he works for.. he is in training after all and the consultant is the one responsible for your care. Deep breaths
My local also happens to be a specialist center for allergy as well ( i live in london so i have no shortage of hospitals) and they have a particular scheme 'asthma patient passports' which allow you the skip through triage and go straight to resus, i also know the asthma nurse and consultant very well as i was under them for quite some time, (was kinda expecting to formulate plan with the asthma nurse today) and the consultant has to sign off on it as RBH doesn't have an emergency department so i go to the local, so the asthma patient passport would be extremely useful (my own is currently out of date) also my local are supposed to watch over me between my RBH appointments, but the reg just didnt seem to grasp this (this wasnt so much my issue more his conduct in the appointment). but still it is all quite confusing i have to admit, but i can see where the logic is coming from as it is much easier to get to the local than RBH which is three tube rides away, and not great fun to do when your asthma is playing up.
I will try speaking to the cons next time i go there or i might drop an email to one of the asthma nurses there about the reg.
p.s the deep breaths are always helpful nursefurby ----> oxygen does wonderful things for us doesnt it?
Oh that's a bummer... Though I can see how it would work in theory!
I don't know if I'm fortunate or not - I have direct access to the respiratory ward at Papworth (they don't have A&E as not general hospital). In some ways it's a pain as its a couple of hours away but because of the way it works, I'm admitted long before it gets to an acute emergency. Since going there I haven't to do the 999 or A&E thing which is a blessing. But it has meant more inpatient treatment as they want to knock things on the head quick.
Is three tube rides far? I'm a country bumpkin, kinda meaningless to me LOL! Do the RBH not give inpatient support then? I kinda presumed that open access thingy would be across all specialist respiratory hospitals for their resp patients.
Good idea about emailing, feedback is important
nursefurby, you say you simply go Papworth now. I live in the North but I have to wait a long time in between cons appointments. Do you not see your local GP then?
Nope. I have regular app's at Papworth (varies from monthly to three monthly depending on situation) and I ring them direct if things are deteriorating and need admitting, or I need advice (less common as I have a plan re when to start oral steroids, admission is usually when they aren't working or due to infection).
I might add that I have a fantastic GP but he can't provide hospital treatment I do see him for everything else!
This is good, I am yet to see a GP who I feel is listens enough/knows enough etc. I think I will just save all my questions or concerns for the cons when I see him next.
I must admit I am guilty of hopping around between GPs too :S
nursefurby, RBH do have open access to respiratory wards however my asthma tends to just 'go' quite quickly and this often is during office hours so it would be hard to swing an admin at RBH for me acutely as 3 tube rides i'd have to go from my home to the tube, then go on that train for a few stops and then switch to another line and etc, this is all/mostly underground and i would feel quite uncomfortable about making the journey if i though my asthma was bad enough to be admitted (my CO2 can get impressive) and then i'd need to do a ten minute walk - this piled in with all the triggers would be a disaster in the making. and my local doesn't have an A&E so to speak but is partnered with a hospital that does (five minutes away) and the asthma nurses work flexibly between the two.
However my appointment fiasco is partly my own making as i pushed a lot of my appointments back (i was doing my a levels) so no one has seen me in a little while and the presumption has been 'everything's fine' when my school attendance has ended up reflecting the complete opposite.
Unigirl2 (i notice your at uni?) i'm about to go off in September, how did you find the general transition / asthma care change ? (i've heard horror stories of uni GP's)
Hi Sarah, Yes I am about to enter my third year. University has been a massive learning curve for me asthma wise. Before 17 I had never shown any astmatic symptoms or ever had allergies. And pre-uni it barely affected me, I had never had an attack, could go clubbing and drink like a tank and it would not affect me in any way. I think this is because the asthma hadn't kicked in fully yet (if this makes sense). So for me the transition was a lot harder because for the first few months of Uni I was fine(wouldn't really know I had asthma) and then after that I had asthma badly for the first time, had my first attacks etc. I ended up in A&E a few times (all a few days after Big nights out) and it was a massive shock because to me I didn't know any different - I was a student, we drink and go clubbing.. So I struggled getting used to how my body was behaving as to me it was so new and strange and I didn't really understand what was happening. So my first bit of advice is, know when to take it easy.
During freshers week (or two weeks as it was for me) it is tradition to go out and drink every night. Be careful with this. Alcohol can be a trigger for me (It wasn't for the first few months of uni but it is now). There are certain ones that are guaranteed to set me off for ex wine is full of sulphites and thus bad for some asthmatics. Make sure you mention to people that you are going out with that you are asthmatic and have your inhalers with you in case there are any problems and they will know what is happening.
Also, as people are coming from all over the world to this University, there will be a lot of illnesses going round and something known as freshers flu. I was lucky and didn't catch this, probably because I was taking multi-vits every day and I was catered so always getting lots of fruit of veg, so make sure you get the nutrition you need to keep off illness as this can be difficult when you are first living alone.
In regard to changing GP, make sure you sign up as soon as you get there just in case. Your halls or Uni will probably encourage this during freshers. You might want to check which is the best GP to go to rather than just sign up to the one that is being suggested (for me this happened to be one and the same).
What horror stories have you heard? I didn't hear of any pre-uni and haven't really had many problems.
Hope this is helpful, if you have any more questions feel free to ask.
UniGirl i can't imagine how much of a pain it must have been, getting caught out by your asthma. Mine has be a pain in the backside throughout my teens but like you it didn't kick in straight away. so i'm quite used to shipping up in A&E, both of my uni choices, know about my asthma ( i did drown them in consultants letters recently) so i feel they are somewhat prepared, (also both choices have nearby hospitals and difficult asthma clinics) and i eliminated A LOT of uni's because of hospital distances and how well the staff reacted when i queried support and the fact that i have fairly frequent admissions.
About the drinking, i used to drink (never huge amounts) but stopped some time last year as alcohol seemed to drop my uniphyllin levels and i just ended up in downhill spirals ( being in ICU with a hangover is not fun ) but i never knew about the sulphites in alcohol so i suppose that could have contributed as well.
Freshers flu: i've been trying to find ways around this.... so far my ideas are vitamin C (which i have started), i also have a course of tamiflu and a variety of antibiotics at home (from the ol' swine flu days) however i hear the tamiflu can make you feel worse, but a lot of my attacks are set of by viruses and with the long term oral steroids my immune system is a bit shameful, an anecdote from clinic 'I can't find your neutrophil count on your blood count ....5 minutes later........hmmmm you don't seem to have any' (the neutrophil thingys fight infection apparently), but being at a lower dose of steroids has helped i think. But i'm a tad worried as i also have problems maintaining a healthy weight, and i'm well aware that a low weight does not help with infection fighting, i'm also going self catered as i have problems with reflux and gastritis, so i have more flexibility.
I know this is terrible but i've been known as the 'sickie' my whole life at school and although i have a medical bracelet i feel quite reluctant to tell people that i'm asthmatic, as it invariably results in people panicking or you should be fine with just a blue inhaler attitude. And i'd quite like my asthma not to be a defining feature of who i am especially when i'm supposed to be making new friends.
In regards to GP i'm not too concerned as they have limited power over my meds so another hospital clinic will take over and boss them about, but i found a surgery on campus where there is a doctor who has an 'interest' in respiratory medicine, so that might be helpful (a good GP is invaluable )
oooh and onto the horror stories (mainly from other people in clinic), i know quite a few were accused of attention seeking, if they tried to get help early with their asthma i.e before their sats really dropped. (i've been guilty of leaving it till my lips go blue- it helps when distinguishing yourself from the friday night drunks but not something that i would recommend at all ). and from what i've heard uni GP's are really unsympathetic and just geared up for fresher flu and STD's. so i worry about them trying to 'cheapen' my medication regime as this has been the case before and was extremely unhelpful.
But i'm really curious to how people reacted to your asthma, staff, friends and other people in general? and did you get any problems with irritating stigma?and how did you manage to keep up with things when you weren't well?
p.s i never really liked clubbing, as i find people like to bathe in cologne and perfume, which is a massive trigger for me.
Thats very smart of you to consider all of that. I didn't consider anything when I picked me except accessible grades. Luckily, I'm only an hour from home so my mum can get me when I am bad and need resting up. I didn't in the first year of uni(as I said, I was still learning what was what) but into my second year I emailed a lecturer that I knew was well respected and understanding saying I struggled last year with attendance etc, should I tell someone before it happens again? He told me to speak to my Unis ""disability team"". So I notified them, had to explain that I struggle to go in some days, occasionally miss deadlines as I'm ill for days and had to get docs note confirming everything. What happened then was my lecturers for the year were automatically notified that it does interfere with my work and also what to do if I have an attack whilst in a lecturer(this hasn't actually happened to me). So this is something you should do when you get to Uni or even look into it now. However, whilst some were very understanding, others were very slow to give me notes when I missed lecturers, very frustrating.
You sound very sensible about your asthma. I drink less and less these days, sometimes I just can't help myself. I get notoriously bad hangovers though as punishment. Start making sure you get your five a day every day and cutting out rubbish and make sure you get rest when you need it. Hopefully you'll be fine.
Oh my I can't tell you how frustrated I get with the ""you'll be fine with blue inhaler"" attitude. I also find a lot of people with very mild asthma have this attitude (they all seem to smoke too.... :S) it doesn't need to be your defining feature. I think I just casually mentioned it to everyone (but this was back in the crazy party days when I had all the energy in the whole so it wasn't a big deal). Also I like to keep all my medicine out in my room where I can see them and don't forget to take preventors etc so I'm sure people will spot your inhalers when they come to introduce themselves. I think a lot of people thought my spacer looked weird too. My flat mates seemed to be fascinated and wanted my to explain my inhalers and show them how they worked and stuff which was nice as I could exp why I needed them. I don't know anyone who wears a medical braclet, are these common? what info does it give on it?
Ohhh you mean horror stories from other asthmatics. For some reason I thought you meant horror stories about GPs from general uni students. You don't have to go for Uni GP just because you're a student. Go for what is best for you.
From what I have found of students in general, they can't comprehend much different from what they know and some don't care to learn. So quite a lot don't quite understand why I don't know to go to the dirty dungeon nightclub with sweat dripping off the walls or why I don't want to drink. It can be incredibly frustrating trying to explain yourselves without sounding like a drama queen but I don't really care anymore, I do what I want and what is best for me. The only people who are properly understanding about my asthma is my fam and my best friends at home. My flat mates seem to understand but I think they can be blind to how much I can struggle in general (last winter I was very pale and thin from fighting everything). Luckily my bf at the time was excellent with me, would stay in when I couldn't go out, didn't care if we had to cancel dates and generally looked after me. Just be prepared that it will be a big change and that not everyone will be as understanding as you want them to be but I guess thats just life.
In regards to keeping up with things, I just rested when I needed it because I sometimes knew that forcing myself to carry on studying or completing cw was going to tire me out and then I would get even less done in the long run (also, health first!). Like I said, let lecturers know about your asthma and don't be afraid to tell them when you're struggling. I just tried to do work whenever I was feeling OK just in case I was going to feel rubbish later. If I am honest, exam time can be a real struggle for me. As I have explained in other posts, I get really bad brain fog when I'm tired (which is pretty much all of the time) so that and the pressure can be a lot to cope with. I just did what I could, when I could. I didn't do as well as I would have liked but looking back I don't think I could have done anything else and tried my best so I am proud.
Hi Sarah,
It is a while since I was at uni (10 years) but letting other people know about my asthma and allergies was something I was worried about (and also my parents too). It does seem that you have been very responsible and organised though which is great. When you first meet your flat mates, everyone has something to share and you spend the first two weeks just finding out about each other. My former housemate was Jewish and so was telling us all about her religious needs and so my asthma was discussed in much the same way (another friend was diabetic). Like unigirl says, you see something that might be a clue about someone and ask about it. For me it was actually the medic alert bracelet that someone else brought up on the first night. This gave me the chance to introduce the idea of anaphylaxis and asthma and then we had more in depth, this is what you do chats about it. See the disability/inclusion team too (perhaps just before you start) and if you are in halls, the wardens can be another reassuring source of support.
My GP at uni is still my GP as it is part of a large city centre practice and were great. Once they see your medical records, they will know about patterns and like you say be guided by the cons. You will probably need a health check when you sign up to them which is a chance to discuss long term conditions. Use this (and maybe make another appointment if there is not enough time) to discuss your triggers, things you think work well and where you are at with your cons. Everyone uses their GP differently so use it as a bit of a this is what I need from you too (this was advice from my dad who is a GP). My asthma nurse there was also fantastic and suggested that my friends came to see her so she could teach them how to administer an epipen or give emergency asthma treatment. Although I didn't like the centre of attention aspect of this, it was really reassuring for me and them that they could cope in an emergency.
I know what you mean by always being known as the sickly one-I still am at 30! However, it is really important to be prepared as you are making a big change in your life. The more you do it, the easier it gets as you learn from what worked well last time (eg changing jobs, moving in with somebody new etc all require this sort of discussion).
Sorry for the long post. You sound like a very sensible, level headed person which I am sure will help. Hopefully putting everything in place will help you to feel confident with your medical care and help you to enjoy the experience. Wishing you every success for uni!
Sarah, what a crappy appointment!
I just wanted to point out that all the docs changed jobs this week - it might have been this Reg's first day in the clinic. Which is no excuse for not listening, but might give you some hope that it won't usually be this rubbish...
Cx
Going to Uni is a scary thought for anyone, let alone those with serious health issues. But the fact you've been upfront with them and clearly also done your research means that hopefully all should be ok.
There are a few students on here who might also be able to give some more help!!
Curiouser - do ALL drs change roles? Or is it just the f1s coming in? Obvs I know that consultants N stuff don't change!! Just wondering I had a fab dr in resus earlier in the week - so all the anxiety about the other one has gone. Would just be reassuring to know I shouldn't encounter the idiot one again ??
Good luck with Uni guys
Laura x
Unigirl- i can't imagine trying to work with brain fog! that sounds awful. i feel quite lucky in the fact that i can work pretty much anywhere and in any state, the only exception was when i tried to do some chemistry homework after being extubated in ICU ( i ended up colouring my textbook in biro.......). i think this is because i'm very used to being unwell (i'm pretty sure i had an adjustment period when i was younger). so the brain fog may improve with time and with better treatment of your asthma?
The disability team at my first choice already know me and we've had quite a bit of correspondence over the months, however i am still worried about getting notes as throughout school teachers have always been quite variable with sending me work.
you say i sound sensible about my asthma tehe i used to be awful and extremely irresponsible, (i was the sort of person who'd go collapsing on tube trains and buses) normally trying to get myself to hospital. Also apparently our consultants + asthma nurses get told of every time we ship up really ill in A&E and haven't taken an ambulance in, i don't know how true this is but another patient from my clinic told me this.
I'm quite good with my 5 a day etc, but during exam time i tend to get quite a particular food that i just eat too much of, this year it was tea cakes, and last year it was eclairs and doughnuts. However because of the long term steroids i tend to get high sugars, so normally sweets etc are monitored carefully, admittedly not by me but by mum.....
Hmm i normally keep all my medication on a shelf in my room (admittedly its not a small shelf) and there's quite a collection (tablets seem to take up most of the room though) so its easy to remember to take them but i dislike the idea of people knowing quite how much medication i am on. I haven't met many people who wear medical bracelets (outside of clinic) but on the front mine says 'Severe asthma' and on the back it has my name, and drug allergies, i also have a steroid card and a consultants letter that i carry, which explains that i've been intubated etc. i mainly have the medical bracelet so if i pass out somewhere its easier for the right care to be administered quickly and its saved my butt on several occasions.
KaylaCP i never knew you could send people to your asthma nurse to educate them....this sounds very useful, i have a few first aid qualifications, which is really ironic as i'm the one most likely to need the first aid.....and i hear self administered CPR is not very successful..
Also what are the wardens? i've never heard of them before..
C - that would make sense but still listening to anyone's lungs through a jumper is bad practice for a doctor at any level. Normally in the past i've just seen the consultant and i was supposed to but i don't know what happened.
Do you know how often doctors switch around and when, is the same across the uk?
Laurs- i might do a post after i get my results for more specific uni advice. Resus doctors all go on shifts and only tend to be on nights for a few days at a time. i've used the method of waiting till a doctor has definitely changed shift till i go in again once or twice. but i've never been able to work out the rota. hopefully you won't encounter the same useless doctor as they all move around within the department (majors and minors etc), but you never know, you could always ask to see a different doctor?
the F1s come in on black wednesday i think its the last wednesday in august (if at all possible do not go into hospital at this time) i did last year, i've quite frankly never been so scared in my life and i've never had so many needle pricks... in the end the anesthetist had to ultra sound my leg for a vein, i had an audience as apparently this doesn't happen much...
Sorry for the really long post x
junior docs change every six months as a rule - August and February. Specialist registrars change yearly for three years usually. Thats usually August, but it can actually be any time depending on whether there are timing hiccups during training.
Hi Sarah,
My asthma nurse at the time suggested my friends/housemates went to see her (after a month or so when I knew that we were getting along well). It was a little embarrassing but really reassuring. I think it was mainly because I have severe allergies which kick off quite quickly so even if my Epi-pen was in another room, by the time someone had got it I would probably be unable to self administer. It may be something finding out about if it would be useful to you though as it is very specific.
Maybe wardens are a bit out of date (I went to uni about ten years ago and even then it was a very small uni I went to) but basically they were like security guards just a little nicer. One would be around from later afternoon to mid morning on campus and would deal with first aid, security, maintance etc. I never used them for an emergency but a friend did when one of her housemates had a fit and they were great. They knew students with medical conditions to keep an eye on and would help out at night of necessary. My sister had some third years living in halls with them who did a similar looking out for the first years job.
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I had a fab dr in resus earlier in the week - so all the anxiety about the other one has gone. Would just be reassuring to know I shouldn't encounter the idiot one again 
First appointment with asthma clinic
Beginning to despair 
