Hi all, I was admitted to my local hospital on Weds night with the worst attack of my life so far. This was my first time at this hospital having moved to the area only recently; other hospitals have previously sent me home even when I was in distress, because I don't present normally;
1) My pulse ox always has a normal reading.
2) My peak flow doesn't drop.
3) There's no wheeze audible in my chest.
I was determined not to take no for an answer this time, and I knew I wouldn't be able to speak, so I briefed my husband in advance to advocate for me. Thankfully they listened and I was admitted, but I had to fight for everything I knew I needed; I had to fight to stay on oxygen, the nurses kept turning it off due to my high pulse ox reading (interestingly, I had blood gases done in Resus and was borderline hypoxic but still had a pulse ox reading of 98!) I had to practically beg for a nebuliser, and when they brought it they only wanted to give me saline. I threw a (very weak, very quiet) tantrum until they gave me salbutamol, but that took nearly 2 hours of continuing respiratory distress on my part. Finally, they wanted to discharge me when I was still utterly reliant on oxygen.
In the end, an utterly bewildered doctor asked a member of the respiratory team to come and talk to me, so the hospital would be familiar with me the next time I attend. I talked to a wonderful resp doc who actually listened. I cried with relief. She took copious notes, took copies of letters I always carry from consultants, agreed that the usual tests don't work on me and ordered the nurses to follow my lead and let *me* tell *them* when I was ready to wean off oxygen, needed salbutamol, and ultimately was ready to go home.
And two minutes later a battleaxe of a nurse turned off my oxygen again. (I got her to put it back on, don't worry!)
The point of this long, rambling post is just to say that having to fight like this is indescribably exhausting, on top of being utterly exhausted from just trying to breathe. A woman was admitted to the bed opposite me with classic asthma, and I watched with great interest the difference in the way she was treated and spoken to by docs and nurses compared with my treatment. I guess for the docs and nurses, someone like me is the unknown while that other woman is the familiar. I'm seriously considering compiling a set of flash cards to bring with me next time, so that I can repeat myself over and over without having to speak!
Any thoughts?
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pucageorgie
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There has to be a reason why your symptoms are so different. With any luck the doctor who took copious notes will do some research and maybe come up with an answer as to what is going on.
Whilst the incident with the other asthma patient must have been intensely frustrating for you to watch, I guess it's a case of there's a well known (and probably much practised) routine for the typical severe asthma incident, so they knew what they were dealing with and things were rather less haphazard.
Thanks. I'm moving to Guy's hospital in London for my Xolair jabs from next week. A new team is a new opportunity I think, and I'm going to ask lots of questions.
Well done you. Your amazing and I'm glad you shared your story. It's Sooooooo frustrating when your being fobbed off. I WISH DOCS & NURSES WOULD LISTEN TO US. WE KNOW R BODIES N WHEN WE NEED HELP. Hope you get better soon x thanks for sharing.
I'm not saying you don't have asthma, because you're not the only one who doesn't wheeze or drop sats..but have you been tested for anything else? It's just that it is highly unlikely to be asthma if, during an attack, your peak flow doesn't drop.
Not true, peak flow represents large airway function not small. Cough-variant asthma frequently presents with normal peak flow. I should know, I have it.
During a severe attack, the bronchi (large airways) constrict. Between attacks, the large airways may not be constricted but the bronchioles (small airways) may still be, so yes peak flow may be normal in CVA between attacks or in mild-moderate attacks. But not during severe attacks.
Please tell me more! I have what must be CVA and peak flow is useless for measuring exacerbations but my new surgery seem to think I've been misdiagnosed and overmedicated (they don't seem to read the notes with years and years of infections documented). So am I right that this can be a variant of asthma?
Well, my CVA has been present since childhood, I never wheeze, never have. I was on a cocktail of meds as a child (intal, Ventolin, nuelin, some other stuff) and needed daily nebulisers all the way through pre-primary. I had several years with much lower level symptoms requiring just occasional Ventolin, then I started having flare-ups in association with respiratory infections from the age of about 21 onwards. It got much more severe in the last two years. Last year was the first time I needed oral steroids for it. I make horrible dying noises in my sleep during a flare-up and wake up coughing at about 4am and lie awake for the rest of the morning. During these times my Ventolin only helps for about 90 minutes. Things that make me cough outside of flare-ups are exercise, laughing, humidity and cold weather. When I have a flare-up I have to fight to get medication every single time because my SATs are normal, peak flow about 300 and chest is clear. That is the nature of CVA. It is poorly understood by doctors and nurses with cursory asthma training. If you don't wheeze, they just don't understand My coughing fits sometimes make me vomit, or tears pour down my cheeks. I'm afraid to go to sleep at night because I know what happens to me when I sleep. It might not be as obvious as the wheeze type but it's still really debilitating for me and impacts my activities of daily living. I can feel my lungs spasm as I breathe out, and my chest does feel tight, it's just that it doesn't show on any tests.
So glad to know that I'm not alone! I recently heard about CVA and thought that must be what I have; but I did some more research after my latest trip to hospital, and I don't think CVA fits me perfectly (my cough is productive). No other varieties of "difficult" asthma fit either; atopic, TRA, none of them.
You can have a productive cough - inflamed airways produce mucus which comes up. It sucks cos sometimes I can't tell whether I'm actually ill or not. Like this flare-up I had on boxing day, I had no illness symptoms at all, just the cough, no sore throat etc. Was it a viral cough or some other asthma trigger? I'll never know
I also have a mostly productive cough, or at least it's wet (only occasionally coughing up chunks and it can rarely be a bit dry, though not for long). I don't know if it's cva but glad I'm not alone, if that makes any sense.
Thank you so much for the link. I'll look at that and I might have to bring it in to the surgery too. I used to cough most of the time too but nowadays the steroids seem to keep that controlled. Maybe yours can be controlled too? I know they always want you on the minimum of drugs, for good reason though it feels like they don't want you to feel healthy sometimes! (My mum always coughed when she laughed and had bad chest infections but from asthma a ct scan had her moved to treatment for bronchiectasis).
I'm still recovering from a flareup I had from Boxing Day so I'm just taking it day by day at the moment. Winter has a lot of triggers for me sadly I'm so much better during the spring and summer once I've gotten over my usual spring change of season cold. I wasn't taking my steroid inhaler at all during the summer months as my symptoms were so minimal but the AsthmaUK helpline nurse I spoke to told me off for doing that, haha, so I guess I better take it all year round from now on! Especially now I'm on Fostair, I'm not sure what will happen to me if I stop taking it DX
Thank you for so much detail. I'm sorry that you are also having problems with hcps. I have normally been given prednisone without quibble despite peak flow about 460 and normal oxygen but I will be coughing and breathless and I guess crackly chest then is my "friend". Without the pred I'd be in awful nick and it can go on for months. The new docs have given pred twice this winter but I see a different one each time and those that haven't seen me really bad seem to think I'm making it up and demanding stuff I don't need.
I sometimes coughed myself sick as a child and would be woken by my dad with a cough bottle and he'd be really cross that I'd woken everyone. I couldn't run or do sports but it was just seen that I was small and bad at PE in general. At 18 it got much worse through a winter and then the next year I could barely walk around, nobody would sit by me on the bus and I was thrown out of places, it was awful but I was diagnosed then and eventually reeled in a little with Ventolin and way more with Becatide or Beclazone. It's always burst out again since though except for a while when I was cycling lots and then again last year after I needed pred and amoxicillin while pregnant and they let me stay on 2000 micrograms inhaled steroid after that. I was still taking it when I moved flat and changed surgery and all the doctors here are adamant that I should never be on that much even in an exacerbation and should take about 800 micrograms max ever. So now I'm on Montelukast and a bit of Fostair and (of course) getting sick loads and 15 days of Prednisone since Sept.
It is high to have stayed on, but I understood for years that you were supposed to be take 2000 short term while ill -- now they look at me in horror! Have the guidelines changed?
I'm on 3200 much of Symbicort daily, as well as Alvesco, Montelukast, steroid nasal spray, Ventolin and Xolair! Docs always question the amount of meds I'm on, but back off when I show a letter from my consultant which I always carry.
That's what I'm looking forward to... getting seen in April for the first time ever and now I've seen the awesome power of the consultant's letter with my baby boy, I'm hoping to have my own for whatever's needed. No more telling the same story again and again!
I'm an enigma wrapped in a puzzle wrapped in coughs. I've questioned my consultant several times over the years about whether this is really asthma or just asthma, and he insists that it is. My consultant was the top man in Ireland for asthma, btw. Everything else fits; highly allergic to pollen amongst other things, spirometry and lung function tests fit, IgE levels fit, I'm responsive to Xolair, etc etc. Still, I'm weird and that weirdness changes periodically. For example, I wheezed as a child but don't now as an adult.
Like I said, I'm starting with a new team in Guy's next week, and I will have tons of questions. I'll report back if there's anything interesting.
Please do. I have a lifetime of this behind me and my mother was the same (her eventual rediagnosis was bronchiectasis, her father had emphysema and his mother died young of an asthma attack -- something is going on here and now my baby's one serious reflux symptom is a barking cough...).
He's nearly 17 months and was diagnosed with reflux at 6 months when we managed to get referred after a terrible barking cough from 3 months, with lots of nighttime fits and naptime wakenings. He takes ranitidine for the acid and is so good on it (we've had to up the dose over time but he might be ready to come off it). I would like to ask the paediatrician to keep us on his books if he is deemed discharged over the reflux, just in case he's going to have lung problems. Don't know if they do that though...
Hibaorryvubhad to go through that must of been horrible to b treated in hat way I'm quiet lucky I go to the Royal Bromptom hospital in London and they r amazing up there I get no hassles at al there in it straight away I have just come out of there after having surgery and they have looked after me very well I can't complain about anything I'm going back up there on the 1st for next bit to b done but they r great it's hard when u hear stories like urs to believe it still happens so sorry
Morning all, just an update. I saw the nursing team at Guy's on Thursday and had my first Xolair jabs in the UK. They're upping my dose of Xolair by 50% from next time because I've gained weight (yippee), so hopefully that might help in the future.
I told the nurse all about my latest A&E trip and how I suspect I have CVA. She didn't seem familiar with it which was disappointing, but she said one of the other asthma nurses was developing an Asthma Passport that people like me could bring to hospital, especially when we can't speak; the passport would list meds, triggers, presentation, etc. It's a brilliant idea and exactly what I've been hoping for! Hoping I'll have that before I have another emergency. They're also going to get me in to see the new head of asthma and allergy soon, which would be good.
However, I've now had a week of pred 40mg and my breathing is easier, but I'm still as weak as a kitten. Seriously, I can barely stand. I don't have an infection. I asked the nurse in the chest clinic about it and she just said if it continues I should go back to my GP. She didn't even listen to my chest. Rather unsatisfied with that to be honest. Back in Ireland I almost never went to my GP, I just went to the respiratory team in hospital because they knew me so well.
Oh well. Just got to get used to a new way of doing things I suppose. I normally improve about 3-4 days after Xolair so if I'm not better by Monday I'll call the GP.
Totally get you with pulse ox meters etc . I have a very good local hospital and am admitted every 4 months or so which usually ends up in a 3-4 week stay . My consultant is amazing and we have a printed management plan for each admission that is also tagged to my admission notes which flashes in the screen . My blood gases ccan change from hour to hour - and my pulse ox remain high but I'm quite lucky that the staff know me in the ward well, although they do get fixated by numbers on the screen - but when gases are taken it usually means an ITU review as I am hypoxic. Because people like us don't fit the text book , classic asthma it can be very distressing esp when nurses who don't know you thinkthry know your body better than yourself . I am often judged as it being psychological or even putting it on !! . I have now been diagnosed with brittle asthma and as a former nurse myself know quite a bit about my condition - but I understand exactly where you are coming from , the normal asthma pt gets all the proper TLC abd your left feeling unwell, exhausted, scared and frustrated . Because I have had the condition for so long by body has developed its own breathing mechanism that , I can abd have the strength to focus on - I do not retain co2 - so I do now manage to escape ventilation . What I'm trying to say is You Are not alone - asthma is never straight forward and you need to make sure you have a action plan written by yourself and consultant that outlines the main issues if your asthma abd the general treatment you should recieve even if the normal ( ha ha ) asthma indications are not present .
Wherecabouts do you live ,nit sounds like you'd Benifit from a review from a specialist hsospiral like Birmingham heartlands or the Royal Brompton , don't leave it , it will eat away at you because of being wrongly judged , I had ir last weekend on a ward that's know me for 9 years - pulse ox was fine , I was on oxygen and back to back nebs and iv amInophyllinr but was still being told by the nurses I was fine - Monday morning consultant ward round - consultant could tell I was not right , did immediate blood gas and from then on it was reviews by ITU , increased intravenous medication abd very close observation - sars were still 96% but I was critical .
SORRY , IT SEEMS IVE TALKED MORECABOUT MYSELF THAN OFFERED ADVICED BUTCSEEING YOUR POST HAS Just echoed how my admission this time has been frustrating and at sometimes neglectful . I hear your frustration .
Thank you! I have now found a brilliant gp who has similar asthma and understands. We've written an asthma "passport" describing my presentation and she's sent that to the local hospital and to NHS 111 so they're aware of me. I'm also seeing my new consultant in 4 weeks, and they're increasing my Xolair by 50% from next Thursday. It feels like I'm making some progress.
Thanks again for all you've said; most of all it's great to know I'm not alone
another night of a so far 3 week stay with brittle asthma - WA very tight and wheezy a despite being on iv AMINPHYLLINE regulars etc - sand my BRATHING was getting but tags were fine - I finally got the nurse to,call d so did AGB and I had a PO2 of 7 - scary , only then after bak to back nebs , iv magnisium and opti flow increased to 60% dithery rise to 10.4 . Still not brilliant consider ion the amount of o 2 on but they nurses will still insist - your ok SATS ARE FINE grrrrrrrr rant over !
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