On a high after a fab outpatient appt with my local con... if I didn’t know better if swear she had severe asthma too! Never met a doc who actually understood what we go through before I met her, and after a good chat today (which included asking me to give a med student a few horror stories 😂) I can conclude that she is utterly awesome, and I wish there were more of her out there! I swear she even understands the unicorns (something I luckily am not!)
I really hope she’s settled and happy where she is and never wants to move on! Cause I think I’d have to stalk and follow her
Guys remember for all the crappy docs that are out there (and we all know there are some) and really are some stars too! (She also asked if I’d be happy to do some talks to med students/further afield... defo yes just tell me when/where)
I may still have a wheeze, sound like a TARDIS and been told to stay up on 40 pred for another 4/5 days then do a slow wean (she wanted 1mg week, I turned her down 😅), but I’m definitely feeling good after that appt!
I hope you all find your star if you haven’t yet!
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EmmaF91
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Glad you were happy with your appointment. She definitely sounds like a keeper. I once had a professor describe to me exactly the problems I had with my lung disease and how I felt.
Unfortunately he was one of a team and after that one time I never saw him again, always being called for by the team consultant when in the waiting room, but I very much appreciated his understanding .
With forthcoming speeches to med students and, I often think, your ability to write so well, you may soon be a celebrity as well as a champion for asthma care.
I hope you continue to improve and have a decent weekend xx
She even admitted that most severe asthmatics basically end up with a form of PTSD due to poor care... I told the student I overcompensated, over educated myself about my condition and often try to pre-empt the issue (state I don’t always wheeze etc) to get in before they say anything... con said first time she met me she could read my thought process and the breakdown was expected when I realised she was actually listening 😅.
Also told her I have very fond memories of the last time I saw her as inpatient... cause she was a lot more bothered by me being there than I was (‘well that’s not that difficult’)... I was just pleased I wasn’t as bad as the prev year or 2. 😅
She also got the fact cause I’m young, asthma (so variable and ok if completely still) and a ‘smiler’ I can’t possibly be ill... she gets the young persons syndrome! I then play act being incredibly upset ‘there we go, now everyone knows you’re not well’ 😂😂😂
I’m all for sharing experiences with people... cause if I can stop just 1 asthmatic having a similar experience then it’s improved someone’s life.
Sorry to hear you only met your star the once. Hopefully you’ll bump into them again (or find a new star). Thank you and hope you’re as ok as you can be in this lovely weather cx
Really impressed by your cons awareness of the effect of asthma attacks on mental wellness. I’ve always been a big believer that any chronic condition is holistic. The mind is involved as much as the body. I’ve a feeling that an asthma attack is considered to be a traumatic event that has the potential to trigger PTSD. I know after my awful month in June, I was shaking most of the time, afraid to be left alone and afraid to even move in case it triggered an attack. Some repressed memories of childhood attacks also came to the fore. I also developed a nervous twitch in my right eye which is a definitely a sign of stress. I do think the medical profession should give more thought to the mental welfare of all who suffer from chronic conditions. Asthma attacks are an extremely frightening situation to be in, which is understandably going to have a negative effect on the mind.
This was more about the long term mental consequences of the severe asthma, rather than the short term side effects of attacks. For example when I can’t breathe I’m more worried about people not listening/telling me it’s in my head than I am about the fact I can’t breathe 😅. Because I have experienced that a lot. I stress when I call 999 cause ‘am I bad enough?’ (What if they think it’s nothing, what if they give 1 neb and leave me cause I respond but I know it won’t last and they don’t listen to the warning?) Once I know they’re a good team I really relax (and usually cry with relief)
I also have overly educated myself about asthma (literally so I’m up to almost a asthma consultants level of asthma knowledge in most areas) so that I have the info I need to fight when people don’t listen (ie iv hydrocortisone is NOT the same as pred, maintenance issues IS a thing, signs to differentiate asthma from anxiety etc etc). First time this con ever met me she could ‘smell (my) fear that (she) wouldn’t listen to (me)’. She’s just the first to acknowledge that all these mental hang ups so common in severe asthma is a result of the system, and is a thing 😅.
For me I’m almost so used to having issues I don’t find them scary (more a ‘this again 🙄😒’ mental response... like I’m more upset that I didn’t manage to get past Xmas without an issue than I am that I had an issue this time 😅)... and yes that’s probably an issue in and of itself... what I call the ‘bad’ attacks I’ll usually have tears as my brain processes how close a call it was but generally this doesn’t occur. (This the last one was 2017 when almost tubed). I think those who are ‘lucky’ enough to not have the frequent attacks manage to avoid the mental hang ups, but also may find they have more of the emotional backlash because they ARENT used to the issue (so brain freaks out), but also haven’t had to ‘fight the system’ to the point their brain gets a tad messed up 😅
I’m very impressed my con gets that the system is the cause of some of the issues, not just the patient!
She sounds amazing. You are definitely in good hands.
Unlikely to meet the professor again, I was discharged from the hospital last year, nothing more they could do.
On the plus side, thought I was brewing a cold this week but it hasn't developed. Also had a COPD review on Weds with a specialist practice nurse I haven't met before (former respiratory nurse). About 6 months ago I asked to try Spiriva Respimat as a glycopyrronium inhaler I'd been using for over 2 years was more often than not making me cough as soon as I used it. Can't honestly say that the spiriva did a damn thing so she suggested I try Braltus. I'll try anything so I said ok. This is only the 3rd day and while I'm still severely SOB when doing anything it actually feels easier to breathe which is great. She's going to phone me in a couple of weeks to see how I'm getting on with it and that's never happened before. So for now all is reasonably well apart from the perishingly cold weather here but we haven't been affected by the awful floods in S Yorkshire.
🤞🏻🤞🏻🤞🏻 that cold has been scared off (maybe it felt threatened by all the stories on here this week 😅😂). Ooo hope the Braltus does make the difference it sounds like it’s doing, and whoop for a follow up call!!! Stay as dry as you can! Xx
The nurse is a former hospital respiratory nurse now working as a practice nurse at my GP surgery with special responsibility for reviewing patients with lung disease.
The PTSD thing is interesting, as is the overcompensating and getting in there first. I totally do that. Said to my cons today that what's helped massively this time is coming straight to resp ward from a&e. He acknowledged/understood and was talking about it being psychological. Yes, it definitely is! I'm safe here!
Over justifying and reasoning it out too. Dreading seeking help jic it’s a ‘bad’ team that don’t understand. Nerves over doing spiros/feno/LFT/BTs etc jic it’s normal for some reason (even tho it kinda should be if doing when well, and feno is new and they aren’t 100% sure how useful it is for non-e asthma). Nerves for opening clinic letters. Prepping of a fight (even calling it a fight) when you seek help. Even the anxiety of calling for a neb cause ‘what if they say I’m not bad enough’. For most asthmatics feeling SoB would mean calling for help, yet I live by waiting til ‘bad enough’.
I mean my spec Con was first to say anxiety/depression is often a very common side effect from having severe asthma, but she’s the first to label the ‘hang ups’ as caused by the system and almost forced onto us just cause we are fighting to literally survive. Also first time I’ve heard (Con was talking to med student) that if I hadn’t have chosen the route I did (educate, play the system and keep fighting) I would have been a very likely candidate for fatal asthma (I come from a VERY crap GP surgery who took 6 weeks to identify an asthma attack so...)... ‘so please remember Emma, if your patient is firm something’s wrong, young and calm and keeps coming back no better/worse listen and do SOMETHING’
And yes. I very much relax as soon as I know they’re listening. And I’m glad bypassing amu helped yourself!!
All of your first para is so me!! I am a mess with clinic letters and appointments (as you and Js706 know...) and it affects my stomach so I always think I am getting a stomach bug which magically goes away.
As a non-wheezer I always get worried when they want to listen to my chest too. I will say 'I don't wheeze' as soon as they make a move in that direction, and massively overexplain even if I can't talk well, then be ridiculously relieved if they do acknowledge the lack of wheeze or if there is something else eg air entry or exit reduced, anything to show I'm not there for no reason as I always suspect.
I'm pretty sure I'm not supposed to be relieved when they say 'reduced air entry throughout' but I am because I'm thinking 'ok, relief, this was definitely justified, I needed to come in then'. If things appear not too bad I'll get incredibly worried that I shouldn't have come, which I'm very well aware isn't safe and i would never approve of for anyone else (don't do it people!)
Oh I get that too!! I think I’m so used to turning up in silent chest that I always preempt with ‘i don’t usually wheeze’. My con today ‘🤨 every time I see you you say that, but yet you always have a wheeze’... 😅. Told her it’s from the no wheeze = anxiety not silent chest that I get told a lot in a&e... (should have also told her she listens on skin, not through 2 T-shirt’s a thin jumper and a fluff lined hoodie...)
So completely get the relief when they give the ‘bad news’ 😅😅
Lol yes...or the one I had (resp cons...) who listened for about 2 secs in one place through a gown, with me sitting down, and then said I was all fine to go home.
Mate I'm surprised you could hear I was even breathing at all with that, never mind wheezing. I was pretty sure he'd made up his mind before even seeing me - perhaps I should have lain down and moaned like the old lady next to me (ok I get it's not nice and perhaps she wasn't a regular, but I was quite annoyed that he was so much better with her and actually listened, whereas me it was a flypast and 'oh not you again, go away' without actually paying attention to if I was ready (I wasn't, not by their guidelines).
Definitely. Con seemed to think docs can’t spot a poorly patient unless they’re miserable. Even if when I’m in everyone likes me cause I’m always smiling. Maybe next a&e I won’t follow the ‘smile’ route and will go for the ‘rock in ball sobbing’ route... see if help is accessed easier
What annoys me is that I somehow both get told it's just anxiety and that I'm fine because I'm not sobbing. Make up your mind lol... (though tbf I do get embarrassingly tearful if they're not listening, which then of course 'proves' their point in their mind.
What a fun conundrum. One I have also heard 😅. I’m lucky that I usually get embarrassingly tearful when they ARE listening 😅 (asked Con to pass on my thanks to the first doc I saw in the ward, cause she had to deal with that 😅)
This thread is a pretty accurate description of the last 2 summers for me. From April to September, taking a breath is the biggest chore! Add a severe pollen allergy on top, extreme heat, plus all of my other triggers and voila, here’s my non-textbook asthma coming out to play!
After an attack, GP prescribes pred, which then inflames my oesophagus and by the end of the course my breathing is worse. I spent all summer battling with GP that the more pred they give me, the worse my breathing becomes as my oesophagus becomes more inflamed, which means attack after attack and my GP continuing to question if this really is asthma (I don’t wheeze so of course it’s not asthma 🙄) and I always look fine (it’s summer, we all have a tan!)
I found myself the most fantastic specialist this year...no battling, just listening. She understood that I don’t wheeze because Montelukast plus my variety of high dose antihistamines is doing it’s job and she also was flabbergasted at the state of my GI tract from my GP overprescribing pred and commended me for being such a patient patient but all of you guys in here taught me to be that way...thanks for always providing the best education!!
Finding “the one” is like a gift from God- haha! I’m still grateful every day that, despite my asthma being bad, I don’t suffer as bad as others in here...I constantly remind myself that there’s always someone worse off and it tends to help me through.
Reading your post gave me all the feels 🙌🏽 You need to be invited to conventions and conferences as a speaker...the world of asthma have a lot to learn from you (and many others in here too)
Totally! And I also do that. I know people a lot worse off than me, on the right day that knowledge really helps, but in the wrong mood I get major imposter syndrome (thank you docs 😒!). You deal with what you get dealt, and remember it’s not a competition... if you’re stuggling you’re struggling! And we all have different factors that affect us too, family issues, other health conditions etc etc. But if it helps you to think ‘I’m not as bad as others’ then go ahead... just don’t let it turn i it ‘I’m not that bad’ (something my brain does A LOT)
Ha. I think I’ll start off small, with my con and some med students... I don’t like talking in front of a crowd (social anxiety and all that... reading aloud in English was terrifying and I still don’t like to ask questions in large groups 😅🙈). I’m hoping cause it’s asthma I won’t freak out... it’s one of 2 topics I feel like I know my stuff in (the other being gymnastics, and even then could only talk to lay people...). But thanks for the vote of confidence 😊
You know I've always wished we could clone the good ones lol. I hope she stays put but I'm wildly jealous lol - if she ever does move on please send her to ME and you can come and stay if needed lol. (I will also share with others. I'm not greedy lol).
I have to say I was glad to hear your cons was talking about the PTSD-like thing as I have kind of thought that but then felt way OTT and I would never say I had that. I feel like my head is permanently messed up with all the bad experiences and I have a permanent amalgamation of all the worst consultants I have met sitting in my head saying YOU'RE SUCH A FAKE WHY DID YOU GO TO HOSPITAL? YOUR ASTHMA ISN'T SEVERE. etc etc
Personally it's not the asthma or feeling of breathlessness which bothers me that much (I don't like it but it doesn't frighten me in itself). I don't tend to panic and like Emma maybe don't 'act' unwell which can be a problem.
What bothers me is the fighting to be heard, being ignored, told I'm a hypochondriac, or going to A&E because my life is sad and I want attention from the hospital (former cons - that still enrages me!), or being told it's my fault I'm no better because I haven't tried hard enough at physio. Or being told it's all my emotions and they're not there for that (rather than because I know I'm getting poor care and not being listened to about discharge/going home),
This has also led to a bit of a vicious cycle where I get anxious about that in clinic ie being dismissed, but then they think I am anxious about breathing and start reassuring me and I think they're not listening so get anxious about that! I saw a health psychologist in my clinic who did get it, but she was a bit shocked when I said 'you know what, I find it the most reassuring being in resus with them doing stuff because then I know they are doing stuff and have it in hand and I don't have to fight' (at least until shift change or the medics...).
In my experience medical staff are better at grasping that there are mental health effects of asthma itself - though they don't always remember that can be subtle and due to the everyday stuff not necessarily just the acute ones. It is very rare however to find one who understands the effects of the system that Emma mentioned and I've outlined above - the fight to be heard and not dismissed as 'just anxious' etc, plus the fact that if you are anxious that is understandable and it may be for more complex reasons, and if you are calm it doesn't mean you're not ill.
Hit the nail on the head there Lysistrata! And imposter syndrome is definitely something I feel like I should have mentioned to med student as a side effect... and ditto it’s not nice but I don’t panic that I can’t breathe, I worry more about actually being listened too than the fact communicating is going to be dodgy 😅.
No. You can’t have her. I’ve told you before you’ve just gotta move up my way!!!! (Promise next appt I’ll ask her for a hair... will also ask the good ANs 😉)
Hey I didn't say she should move on...just if she gets tired of it you know where to send her cos obviously I'm a cons's DREAM patient lol, who wouldn't want a neurotic unicorn who can't have mabs?
I used to think impostor syndrome was only for positive stuff eg 'I am not qualified for this job and I am faking it without realising but they soon will'. I never realised before you could have it for 'I am not really a severe enough asthmatic to get proper care and am faking it by accident'.
My consultant put me on a list last time (ok, a registry, but list sounds funnier). I try to remember this now when I have impostor syndrome.
Oh wow, she sounds fantastic! I am so glad you have found a good consultant, it can make such a difference.
The ptsd thing is so interesting as i find i am more worried about being taken seriously than i am about the breathing! This leads in a massive delay in seeking help, and even when i get help i worry that they are judging me 🙄
I have a clinic appointment later this month and it makes me sick with worry at the thought of it..
It is so good to hear though that there are some medical professionals out there who understands and i am glad you found her 😊
I thought so too, esp as pretty sure we all get the similar sort of hang ups usually based on not being believed/being judged... youre not alone there!
That sounds fantastic! And you would be so good at delivering the very mixed message as well, that is that our asthmas don’t necessarily follow the rule book!
I’m so glad you have a fab consultant. Mine has been amazing too and has got me through the last few years and onto Mepo which has changed my life. Sadly she has recently moved to another Trust and everyone misses her. It does make all the difference to have a consultant who totally gets it. My whole respiratory team are great and always go nice and beyond. We are truly blessed x
I’m sorry you lost your first star... hopefully her replacement shines as bright and glad you have a good team behind you. It really does make a difference doesn’t it
That's fabulous to hear Emma. To have someone on your side who listens, treats you as an individual rather than a textbook, and accepts that we are all different is amazing and I'm so chuffed for you xx
Just a small question: Didd you manage to ask about transport after an episode? I have found myself worrying about it and trying to work out solutions (volunteer organisations where individuals will drive people to/from hospital, and such). Perhaps because I know i couldn’t have done it.
Sorry... I was an idiot and got distracted so forgot 🤦♀️🤦♀️🤦♀️. I know my hosp DOES have the volunteer service, so if it ever happens again (not planning on admissions here 😉), I’ll try to remember to talk to AN/con at the time so they can get it on notes. And maybe just be firm and clear about it to the doc (ie I’m safe to be at home, tho maybe not safe to get myself home)... another thing I think the normal docs struggle with cause I’m young... if I had someone who could pick me up that would be different!
If I remember will ask on my next benra appt, but otherwise I think as I said I’d have to be ‘brave’ and just ask... I managed it once!
I have also been thinking on my way by train to London - wouldn’t it be good to have some version of ‘buddy’ system? A geographical one. You offer so much good advice and knowledge you have truly earned your points. What you need is not those points, but a bit of help in those now rare situations. Ideally someone from the town/village you are in, or nearby.
As you can see I am bothered by this aspect of your situation. I shall now put it to one side, as you are perfectly capable yourself! One difference, I have noticed on the whole that professionals, and friends, get concerned about me when I am noticeably poorly. And I get offered seats on the Tube...........that is sometimes good, but it also worries me..........
Our local village runs a Voluntary Transport service but it tends to be for appointments.
I do drive (we live in the country) but only when I am well enough. My husband needed to go to an appointment and we needed someone to drive us there and back. Couldn't get hold of the local Voluntary Transport Service so I plucked up courage and asked our neighbour and she was glad to help. She told us to ask 'anytime' as if she was free she would be happy to help. Since then several people have said the same.
Useful to know that there are potential people to call on.
Just an update in case you haven’t seen. Managed to get a taxi home from the hosp this episode by telling them I was safe to be at home, just not safe to get their via public transport (then explaining what happened last time to them). Had to repeat story a few times (doc, ward sister, transport organiser) but the fact I’m brittle/severe, had had no visitors (so no one they could say could take me) meant no quibbles really (the only one was the organiser and i think that was more ‘not eligible for patient transport’... she told me if i was 90 she’d have been able to wangle it...)... so Not poorly enough for patient transport eligibility, and my hosp no longer does the volunteer patient transport so the taxi was offered and I managed to avoid the walking/cold/rain/smokers!!
Thank goodness for that! But still pre negotiation required clearly. It needs to be on your hospital notes, and action plan as non-negotiable. Still, I know full well that these things can be hard to come by, though it seems ridiculous in the circumstances!
And thank you for letting me know! And from that I now also know you are home again. I had hoped you were by now.
So glad to hear that you have found a consultant who gets it. Hope you don't mind me asking for your opinion as I was really interested in your reply with regard to the FeNo test. I was given a definite diagnose following a normal spirometry and only on the basis of a high FeNo, and still have my doubts, not sure why! I do not have e-asthma (can't remember how to spell the 'e' word) from my limited knowledge of the results of a blood test which was taken prior to any medication. Ta
FeNO measures the level of nitrous oxide in your exhalation. Increased levels can suggest that there is inflammation in the lungs (as such steroids can reduce it). However cause it’s a new science they don’t fully understand it. For example I’ve scored my highest (98) whilst getting over bacterial infections, but at the time I don’t think my asthma was as bad as other times I’ve done it (usually around 55). I’m also one whose level usually INCREASES after treatment (ie day 1 admission FENO 50, day 2 66, then a drop) which seeing as the inflammation is calming down. My con said they fact mine does change is the only helpful thing about it, but she knows people who has it really high as their normal, and she’s rate as mild/moderate asthma, and others she’d put as severe asthma whosenlevels don’t change at all. Research suggests demos best for eosinophilic (😉) asthma, which only accounts for 40(60?)% of severe asthmatics, so really isn’t that useful, and in the absence of a positive LFT/reversibility test. And yes BTs/sputum tests are a lot more accurate to diagnose levels.
Hope that explains a bit... and if anyone has more info on FeNo/NiOx please jump in
Hope you are doing OK? I really appreciated your explanation about the FeNo levels and as I said I had already looked it up and could see it was not a definite diagnosis on it's own. I saw the new GP today and he was very nice, he has asked for all the paperwork to date, I had taken some but not all of it, there was rather a lot! When I mentioned that I did not think the FeNo test was sufficient on it's own to say it is definitely asthma he seemed to think it was. However, I assume he has gone away to discuss, maybe ponder on the consultation, and has said he will ring me on Wednesday. He did agree that it all seemed odd and said it did not necessarily add up to asthma. I am going on holiday on Friday and really a bit worried about going away, last two weeks have been grim with various issues. Do you have articles you can direct me to on why FeNo results are not accurate enough on their own, I did read it somewhere but after searching again can't find it. I believe what you said but I just told this new GP I had read it somewhere and I may need more ammunition.
My first consultant was a professor at a SW London teaching hospital. He was utterly vile in every way. I gave him a 2nd chance appointment then refused to see him, there wasn't another con so I saw one of his registrars who was utterly amazing. Her 1st words "I've read all your notes and gp letters, why haven't you had a CT scan, did you refuse?" I almost burst into tears with relief, all I wanted was a CT scan for diagnosis. Sadly of course she moved on to another department after 6 months. I will be forever grateful for her understanding, diagnosis & support. Somewhere in the UK she must be the most fantastic consultant in whatever field she chose. Her parting words "You're a beautiful person inside and out and you deserve to be as well as can be".
Unfortunately I later got the push from horrible prof who disagreed with the bronchiectasis diagnosis. He decided I 'only had asthma'. My gp practice wanted me to complain but at the time I was too worn down from 5 x pneumonia and constant lung infections. They took note of all Caroline's letters though so support was good.
I moved out of SW London recently to avoid the pollution. New practice isn't so good, no rescue meds and after respiratory nurse insisted on a referral as per NICE for bronchs gp decided I don't have bronchs so I'm in a big of a no mans land at the mo. I'm dreading asking him for the preventive abs (3 per week) this winter and if he does I'll have to change practice grrrr
Thanks for your original positive post, very uplifting 😊
Gosh, to EmmaF91 and Peege, thank you both, I am not very knowlegeable but can read things on line, and I had read even before I had the FeNo test that it was not 100% reliable on it's own. Peege, I think your first consultant sounds like the one I saw, obnoxious was not the word, if I hadn't had my husband with me I would have burst into tears but then thought I wouldn't give him the satisfaction! I am going to see a private GP on Monday armed with all my 'evidence' to get this investigated properly. I am not afraid of the final diagnosis being asthma, I know all you amazing people live with it all the time and I know I could, just want to be convinced it isn't something else! Thank you, I can't tell you how much having the support of this forum means to me.
Emma that is good news about your appmt. Yes there are a lot of crappy docs, but thank goodness for those who aren't. Those who listen to the patient, are open to learning and don't pretend they 'know it all', and mostly those who are experienced and really care about their patients.
Three cheers for them all.
Hope the steroids help and you continue to improve.
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cos obviously I'm a cons's DREAM patient lol, who wouldn't want a neurotic unicorn who can't have mabs? 
kick asthma holidays [sedbergh cumbria]
