Update on appointment with consultant at severe asthma clinic

[Celie1]

Hi, hope you’re all ok.

I just thought I’d share my experience and ask for your opinions and advice 🤗

So, I thought the consultation was a bit one sided and it felt a bit rushed 🤔, but maybe that’s me expecting more of a chat.😆

He didn’t cover much about my asthma history just saying ‘has it just got gradually got worse?’ He didn’t ask about my triggers either, although he did ask if I have hay fever (no) , I forgot to tell him about rhinitis (damn!)🙄.

He didn’t know about the blood tests I’d already had done, so I told him my asthma nurse had said i had non allergic and non eosinophilic asthma. He explained that he was involved in research about this and that not much was known yet, still finding out etc. He thought my asthma was to do with something in my throat (microbe?) that shows up like COPD symptoms (wish I’d been able to record and play back the conversation. I always forget what’s been said!) 🤦🏻‍♀️🤷🏻‍♀️. As for medication, I’m on everything I can take, but fingers crossed my breathing is much better at the moment 🤞

He also went through a series of computer based questions (I think designed to give a rating on how severe your asthma is) but I found it really difficult to answer the questions as they were based on the last 3 months. If he’d asked me a month ago when I couldn’t breathe very well, then the answers would have been easy! 🤷🏻‍♀️ I found myself guessing, because I just couldn’t work out ‘how many times in the last 3 months my asthma had affected my blah blah blah! No idea! Without taking ages to go through my notes to count how many times I’d had to take ventolin. So Im not sure how accurate or useful the result of that was!

Anyway he’s referring me to ENT, I’m not sure what will happen there so any ideas welcome.

Also reverse spirometry and had a FeNO test while I was there. I failed it! 😩. I couldn’t breathe out either slowly enough or in the correct way. The nurse had to repeat the test so many times it became farcical 😂. She kept explaining to me again and again what to do and I was saying ‘but I think I’m doing what you’re telling me to do ie blow like you’re blowing up a balloon’. It was so frustrating because I wanted to do it properly. We got a reading at the last couple of seconds on one of the tests, but that was it , I couldn’t replicate what I’d done so we had to give up in the end. I was getting chest pain and had to take my inhaler! Has this happened to anyone else or is it just me?

Sorry if this was a bit rambling and lengthy! Thanks for reading 🤗

[runcyclexcski]

doesn't hurt to ask for a second opinion from a private consultant if you are unhappy or confused with this one, or ask for another NHS consultant?

>>>"felt a bit rushed"

A private consultant I went to (after giving up on the NHS) spent 45 min, looked up all the tests over the last 5 years (NHS ones), did spirometry, scheduled blood work for IgE and Eos, requested medical notes from before (USA) and put me on the Xolair waiting list (based on results later). The NHS consultant gave me 15 min, did not bother to check any tests, did not do spirometry (that was scheduled after another 6 months), did bloodwork w/o asking first if I was on steroids (I was, so everything was "negative"), replaced my normally working Seretide with Fostair to which I had an allergic reaction, and did not ask for any medical records (I did ask if it would help if I sent those).. Now, that's a fail.

Speaking of fail -- I am not sure it was your fault that you "failed" the NO test. LOL. It is up to them to explain it to patients properly. I am making a wild guess here (based on using and making scientific instruments for a living) -- wrong settings that did not work for your breathing rate? The machine giving an error message, and the tech not knowing what it means ( hoping if you do it again it will just work?) :). The NO machine is not a Peak flow meter, it's quite high tech (for the average user anyway).

[Celie1 in reply to runcyclexcski]

Hi, Thanks for your reply.

Your consultant sounds a lot worse than mine. Shocking!

Think I’ll stick to this consultant for the time being, even though I was a bit disappointed. I’m seeing him again after I’ve seen the ENT consultant and had spirometry done so I’ll wait and see what he’s like then.

About the FeNO , yes it could have been wrong settings, although I did manage to get the ‘cloud’ in the air once, if you know what I mean.😆 I might have to repeat it next time I go, I think they needed more than one reading. I don’t understand the readings, but she did say it was a bit high. I know the nurse is part of the respiratory team so I’d like to think she knew what she was doing 😬.

Hope you’re doing ok.

[runcyclexcski in reply to Celie1]

>>>I’d like to think she knew what she was doing

Yes. I agree. Still, if in doubt (and if you are not better, or if they are not reponsive) do not hesitate to ask for a second opinion. We are all human, and whether they know what to do when seeing anything out of the ordinary (10% of patients) is what defines their true qualification. 90% of patients can be probably treated via a computer algorithm (which, sounds like, is what your consultant did ), and those 90% do not have to log onto this form seeking advice -- it's the 10% who feel left behind who are here typing up their symptoms.

[Celie1 in reply to runcyclexcski]

Sadly, I think you may be right.

But it’s good to know you can ‘talk’ to someone on here and they will ‘get’ how you’re feeling and give great support.

I’ve also learnt more about my particular asthma from being on this forum over the last year than in the previous 15 years I’ve had it!

Thanks for your support 🤗

[Lysistrata Administrator Community Ambassador in reply to Celie1]

If you do it again, ask for the pointer/dial version not the cloud or the person - it should have a few options.

I'm pretty good at doing FENO (even if I do have massive reservations about how useful it is), and usually get it first time but only with the pointer/dial setting. I crashed the cloud the one time they tried it, and have heard others saying they can only do the pointer/dial version.

It sounds a bit weird so the nurse may not have thought to change the view, as you'd expect it to be similar with all of them! I did the dial first time so when they gave me the cloud another time and it didn't work I just asked for them to change to the dial. (My clinic is absolutely obsessed with FENO so I have done it a lot, but I usually find it much easier to do - with the dial - than spirometry as you get visual feedback. I do find it physically taxing if I am struggling though - the sustained blowing out is hard, but with spirometry that affects my technique too).

Re the computerised questions - I also hate those. I have to do a paper Asthma Control Questionnaire in my clinic which only covers a week and I still find it hard as I am so variable - then they assume how it has been for the last couple of days is how it is all the time. 3 months would be impossible!!

I hope ENT are helpful! I can't remember if you already track things like peak flow and inhaler use on an app or paper? If not it may be helpful to do. My peak flow isn't hugely useful as a one off but the pattern over time and response to meds shows more.

[runcyclexcski in reply to Lysistrata]

>>>even if I do have massive reservations about how useful it is

I never had any elevated NO readings -- which at the time I did it was used as an argument against xolair, a battle I won back then. The NHS wants to do this on Monday, they probably decided that it's easier to buy a 100K machine and save on buying Xolair for people in the long run

[Lysistrata Administrator Community Ambassador in reply to runcyclexcski]

They don't cost nearly as much as that, but I do think it's still too much for primary care given the narrow uses, and there's a danger of it being used too restrictively for diagnosis. I don't think it's the magic wonder tool some clinicians and researchers view it as, and it should be used in context.

Currently for Xolair and the other mAbs you need blood results to qualify in any case (IgE or eosinophils), plus the other criteria for exacerbations. Dupilumab may require elevated FENO to qualify, based on the current licence information and the Scottish restrictions - but this makes sense as FENO level is a good predictor of response to dupilumab. For Xolair and the anti-IL-5 mAbs it isn't the best predictor of response to treatment.

[runcyclexcski in reply to Lysistrata]

>>>They don't cost nearly as much as that

Hm, I googled it and indeed they sell much smaller devices now. The machine I used at UCSF in 2007 looked like a tube that they hooked to a mass-spectrometer. :). I guess it was one of the first prototypes, since it was new technology back in 2007.

[Celie1 in reply to Lysistrata]

Hi Lysistrata,

Thanks for that. Hope you’re well. 🤗

Oh I can’t believe there’s more than one version and the nurse had me doing all the sucking and blowing, more than 10 times. So many times that I had to take my inhaler! She even showed me how to do it by demonstrating herself and showed me a video of someone doing the test, but I kept on crashing the cloud! Why on earth didn’t she try the other ways?!! 😖😤.

Well now I know that, I’ll be definitely asking for the dial next time, thanks for telling me I’m not the only one who has problems with it, I feel so much better now 😅

Re computerised questions, glad you feel it’s hard too. Exactly, there’s so much variation.🤷🏻‍♀️ So when they ask how many times asthma has affected your life, in the last 3 months, I could say every day, if I’m talking about my cough, but a lot less for SoB! or I could feel SoB, take my inhaler, feel dodgy for an hour but be ok the rest of the day, does that count? It’s impossible to quantify! I actually don’t know what the result of that was. 😆. I could do with the questionnaire in front of me so I can have the answer ready for next time. Do you know where I can get a copy of the questions they ask?

I’m the same as you in that my peak flow isn’t a good indicator of how I’m feeling, so I only tend to do it now and again.

I’m interested in the App though for inhaler use, can you suggest a good one? I start to track it on paper, but if I have a day when I only use my inhaler once and then feel fine, I’ll forget to track that one. I need something to remind me!

[Lysistrata Administrator Community Ambassador in reply to Celie1]

hmm I'm trying to think which test is over that long a period! The Asthma Control Test is the last 4 weeks and is here: asthmacontroltest.com/en-gb...

I'm struggling to find a version of the ACQ you can use but this website may be helpful (Aussie, aimed at healthcare professionals, but contains some links): toolkit.severeasthma.org.au...

For apps, I have used a variety and never quite been satisfied! At the minimum I like one that can clearly show pre and post medication. I tried one called Peak Flow (yellow logo) which is free and one called PEFLog which is a bit better but still has some drawbacks - I did actually contact the developer to point them out but he didn't really understand and kept insisting he'd asked doctors! I felt like it was more aimed at people with 'normal' more typically behaving GP level asthma who are newly diagnosed or changing meds, but then so are many things.

If you have iOS there are more options than for Android. This BLF guide may be helpful as it's reviewed various apps: blf.org.uk/technology-for-l... [just search asthma]

If you search within this forum there are also threads about this. Some people swear by AsthmaMD but I hate it - I find it really annoying to use and it reminds me of the worst consultants I've met lol.

I hope you get on better next time with the FENO! It is knackering, I'd hate to do it that many times 😱 I was definitely lucky to get the dial first time and know I could do it with that. My lot seem to use the dial on default but were happy to change back when it was on the cloud.

[Celie1 in reply to Lysistrata]

Oh thanks, that’s brill! You’re a mine of information!

Actually I think he used the 1 month questionnaire, but said to me the last 3 months 🤷🏻‍♀️. I’ll look at the links you sent👍

I’ve got iOS so I’ll look at the BLF guide and link too. I’m definitely going to have a peek at the Asthma MD one now, just to see what you mean about it reminding you of the worst consultants LOL!

Thanks. Not sure if they’ll repeat the FeNO, I suppose it depends whether they got enough info from the single result I got; just as I thought the cloud had bitten the dust forever, as it bobbled it’s way along the bottom of the screen, it rose briefly right at the end 😂

[Lysistrata Administrator Community Ambassador in reply to Celie1]

Ah I did wonder if he said 3 months...gahh he should know that's far too long! Hopefully next time you can show him (or whoever you see) some information. The 1-month one I do find is not very sensitive for long-term poor control - you're supposed to be over 20 and I get 12-13 if I'm doing great and I pretend it's asking about the last 2-3 days lol, or 7-8 if I'm less good.

AsthmaMD isn't awful, but I just found the whole vibe of it a bit 'you'll track your asthma how WE want, not in the best way for you'. It was actually created by a doctor in conjunction with an app developer, so maybe that's why (meow!🤣 ) . While it has improved and is more flexible now, I couldn't believe the earliest one didn't even allow you to enter your best peak flow rather than using predicted! It also didn't acknowledge differences between peak flow and symptoms. The next time I tried it was better but still very fiddly, a bit buggy and I still felt it had an air of 'you will do it MY way' lol. If my consultant were an app, he would be this one, even in the improved version...and he's far from the worst I've met.

It may have improved though! And maybe it's just me.

They may want to do FENO again anyway, even if you'd got it the first time. My lot do it every time, they have a total thing about it. I supposed it's better than going off one reading for years.

[Celie1 in reply to Lysistrata]

Hi, I’m sure he said 3 months, but it was a bit odd as when he asked me the last question, I could just see the screen and saw the 1 month at the top and said to him 1 month? and he said yes 🤷🏻‍♀️…just wondering if that’s what he meant to say all along! I’ve no idea what the score was, he didn’t share that with me. Shame I couldn’t get closer lol!

Haha, love the idea of a consultant app 😂.

Well I suppose with a bit of practice I might get it (the FeNO) next time 😁 xx

[Pipsqueak77]

Hi Celie1

Personally I find FeNO really helpful for my asthma (eosinophilic). Once you get the hang of the test it is quick and easy and gives a result you can understand. 25ppb or under is pretty good - anything above is beginnings of inflammation and an indication that steroid treatment might need to be increased depending on the level.

I find it more helpful than any spirometry - which is more difficult to interpret and can vary depending on individual effort. Techs are also not keen to give you details of spirometry results but with FeNO the result is right there on the screen for you to see.

So I know that’s only my personal experience ( and others don’t like it!) but try to persevere with FeNO as you might find it very useful longer term to compare your values for good and bad periods. I really wish I had one at home.. they are quite expensive atm ( not hundreds of thousands!!) but the prices will reduce as they become more popular and begin to be used by GP surgeries.

It would really help my asthma to be able to tailor my inhaled steroid use more independently by looking at my level of inflammation at a particular point in time without having to rely on infrequent clinic/cons appts. For me this would truly personalise my asthma treatment and put me in control of daily variable symptoms.

Anyway I realise this doesn’t suit everyone’s asthma but wanted to say how positive it’s been for me and how it has given me better understanding of my levels of inflammation and resultant exacerbations.

Fingers crossed you can get to the bottom of your own asthma and find something that helps you to deal with it.

😊

[twinkly29 in reply to Pipsqueak77]

Your comment about comparing one's own relative good/bad periods is interesting - that makes over time such as if it's done at every clinic appointment (and yes they have to talk.me through technique every time, Celie!) My FENO is usually really low so a couple of times (at a difficult asthma clinic) when it was about 29, I hoped the consultant might think ok that's 3 times your norm so might be significant for you at this point. No such luck....it definitely didn't matter in the slightest 🙄 (although sadly for non-classic asthma that's often the way as it doesn't fit with what the so-called specialists want it to show!) Thankfully my current team (secondary not tertiary) are so much more accommodating to different kinds of asthma because aside from any occasional variation for me, FENO is pointless, though I know for particular kinds of asthma it's very useful.

But yes, I'd hoped that it could be kind of used in a relative way!

[Celie1 in reply to Pipsqueak77]

Hi,

Thanks for your reply 😊

I’m glad it’s been useful for you and helped with your asthma. My asthma is non eosinophilic and non allergic so maybe not as useful for me - we’ll see. 🤔My consultant said he would be surprised if it was high.

As for the test. I didn’t find it particularly unpleasant, I just couldn’t make the cloud stay up, it just crashed every time (and I tried many times!) apart from once when I managed to lift it from the floor for the last seconds before it got to the end 😬.

Lysistrata said there are different settings, so I’ll ask for the ‘pointer/dial’ setting next time, which might be better for me.

[Dino40]

FeNO is the devil's machine...It's bloomin tough. I've had times where I've not had a result and it's frustrating... I just can't sustain it for long enough.

Even with spirometry my clinic have a policy of keep going until they get a result. My last Spirometry left me needing my inhaler multiple times and terrible chest pain.

I remember tweeting about FeNO and the rep replied and said how easy it was this that and the other. I was thinking yeh you try it mate when you're suffering a flare up.😡

My results were ridiculously low (about 10) for FeNO despite having a type of Eosinophilic Asthma but I was told that was because my Prednisolone was working.

So no you're not alone, FeNO can be tough 😉

[Celie1 in reply to Dino40]

Hi,Thanks for your reply 😊

I’m glad I’m not the only one who found it difficult 😅

I’m glad I wasn’t in the middle of a flare up, I wouldn’t have been able to do it at all 😳 I can see why it was hard for you!

[Poobah]

You could ask if you could volunteer in your consultant's research. I'm non-eosinophilic and my hospital team were desperate for volunteers. They rang me in 2017 and I explained my asthma was really not great and I thought they wouldn't want me but to my surprise they explained that they definitely could help me at the same time. Turns out it was the best thing. I was able to choose appointment times to suit me (no waiting either when I arrived) and the research nurse ran all the research tests and spoke with me at length about my asthma. She spoke with the consultant and he saw me and really helped me recover from a really bad patch that had rumbled on for over 18 months.

They now phone me now and again and I volunteer if I can. Some of the research is very interesting and I've learnt so much about my asthma because of it. I even ran into one of the research nurses at my GP surgery - she was there trying to drum up volunteers and asked me some questions to find out if I fitted their criteria, but I didn't on that one.

I know things shouldn't be like this but at least I now know how accessible the hospital team actually are now. The research nurses are definitely good at ongoing communication, if you need it. And I'm more likely to phone or email the team if I have any questions.

I had to turn down a biologics trial recently as it involved a chance of being put on oral steroids, which make me really ill. And at the beginning of the year I was asked to take part in research into Azithromycin and Vitamin B - it wasn't something I could do because I was shielding. Each time I make it clear that I want to stay on the volunteer list.

My usual appointments with a consultant are just as you describe and often only 5 or 10 minutes. Last appointment I had was with the top man; it was probably one of the least effective appointments I've had, but he's not a good communicator. Anyway, I've got a great asthma nurse at my GP surgery and ongoing access to the research team, so I'm very lucky.

[Celie1 in reply to Poobah]

Hi Poobah,

That sounds like a good idea. What did the tests involve?

I’ll see what happens with the ENT appointment and ask about volunteering when I see the consultant again.

My asthma seems better controlled at the moment. Not perfect as I have to take my inhaler maybe a few times in a week, but it’s not flaring up from that, so that’s a bonus 😊. Don’t know if I would meet the criteria for research, but you never know.

One thing I forgot to say in my ramble was that the consultant looked at the back of my hands. 🤔 Any idea why he would do that?

Thanks for sharing 🤗

[Poobah in reply to Celie1]

Tests vary depending on the research project. For the non-eosinophilic project I had to provide sputum, undertake breathing tests and answer lots of questions, repeated everymonth for about 6 months. However, the Azithromycin project that I turned down involved taking a biopsy from inside the lung at the start and end of the Azithromycin course, which would have been 4 months. The consultant explained everything in detail so that I knew what was going to be expected, including having to have someone with me for 24 hours after the biopsy. As I was shielding that wasn't possible.

My guess, and it's only a guess, the doctor checked the back of your hands and probably your nail health for signs of anaemia. Our nails and skin can be clues to what's going on inside. I had undiagnosed anaemia for sometime as everyone thought the breathlessness was my asthma. Turned out I was critically ill and was admitted to hospital for a transfusion after one asthma consultant decided to look at my nails & tongue and ordered blood tests as a result of what she saw. She was just thorough and saved my bacon. Simple observations!

[Celie1 in reply to Poobah]

Oh yes. Of course it would depend on the type of research they’re doing at any one time. Sounds interesting.

Gosh that was a close shave with the anaemia. Yes that must have been why he was looking, it didn’t occur to me 🙄.

[Pipsqueak77]

HiHe was probably looking for finger ‘clubbing’ which can give an idea of several underlying diseases some of which could be lung or heart related.

😊

[Celie1 in reply to Pipsqueak77]

Hi,

Thanks for that.

I’ve never heard of it - time for a google!😆