Fed up of my lungs... anyone wanna swap? 😉😂 (an ode to the last 6 months 😉)

[EmmaF91]

Hey everyone - this is more a rant/decompression cause I’m fed up than anything else so feel free to ignore! And I know there are others out there a lot worse off than me 😅 (I’ve been there myself) I think it hit me harder mentally and I’m more fed up cause the issues have come after a period of good>bad 🙈. And thanks to those who asked after me on the forum. Here’s an epic update if you want it, but feel free to ignore 😉😂

It’s been a loooong summer hasn’t it? Esp with lockdown on top of the usual hay fever season! I had hoped that lockdown would reduce issues for me as less triggers (like rushing for the bus to work etc 😅😉), maybe it did, maybe it didn’t, but imo this year was cruddy, esp as last year I managed to stay out of hosp for 6months (May-Nov) just having lots of pred dose changes to cope. Not this year!

Hay fever season started early for me, kicking off at the end of March. This was a massive let down as before the pollen I had managed to drop pred to 2.5mg and had been planning the wean to nothing! But nope. Back to 40mg and hope that’ll be enough....

It was not enough 😅. Started my wean and symptoms flared, and started bouncing my pred dose between 30 and 40. I was fed up and getting pred side effects, but tried to get through. It wasn’t to be. Ended up being admitted for 3-4 days and having to work out what I needed as the doc I saw wouldn’t allow me to have my usual plan 🤷‍♀️.

Got out, did ok for a little bit, until I got pred to 20/25 and the weather started going off. Too hot, way too hot. You were all there. My lungs were not impressed... back up to 35, then 40 when 35 wasn’t enough... then weaned again and bam, rain. Each time it rained I needed a neb. I’m allowed 2 nebs a day... it rained x3 so off to hosp I go, grumpy and not amused,as I knew I was unlikely to get anything. After being told to take 10 vent (🤦‍♀️🤦‍♀️🤦‍♀️ I and ambo had been doing nebs to calm it prev) I actually got a really good doc. Didn’t tell me off for coming (which an earlier doc tried to do) and actually gave me my normal treatment plan without much fight (tho a few tears 😅) from me. It was a-maz-ing! I was solidly green zone with no salbutamol at all for like 10-14 days! Unheard of for me unless I have the meds fights! I was so happy to feel well again and hoped this would last me til the end of my hay fever season! 🤞🏻🤞🏻

It wasn’t to be 😭. The spiral started again. Pollen and too hot +/- thunderstorms. I had managed to wean to 20mg pred this time but things kicked off again. Up the pred went again and I was doing the mantra ‘just gotta get past this weather... that’s all it is. The weather and the pollen’. I tried. I failed. I landed up back in but this time they wouldn’t follow my usual treatment plan. 5 days and other than the hydroC in the ambo before take off (as they were really concerned as no improvements with nebs), nothing but salb. I ended up saying to doc ‘you have a choice, over treat me (as not meeting the normal medical guidelines for med increase) and get me stabilised, or under treat and send my home. I’m not sitting in a hosp bed for the weekend with no aim when I can do that at home... they under treated 🙄 and i was discharged....

Couple weeks later I’m back to where I was in limbo... this time I was fed up. I had 0 tolerance for trying to keep it going at home, but neither was I going to let myself be ‘over treated’ with nebs in ambo. I contacted my team who wanted me to have a F2F GP appt to make sure I didn’t have a chest infection. I didn’t... what I did have was quiet patches and an argument with the GP 😅😂. He wanted to hosp me, I told him all they’d do is salb and send me home. So we compromised 😅. I would go outside building and neb, if PF picked up well I’d go home, if it didn’t I’d come back in, and if I went home I’d have a phone follow up that evening and he could send me in if I was as bad again. That was the thurs, and I was good(ish) 😅😂. Come Monday (bank holiday) I’m done, and want it fixed by my next work day a week later. To bypass 90+ mins of almost constant b2b nebs in ambo, until I am well enough to not need iv treatment (which is what I need to actually get on top and calm things), I went to town to enjoy the last day of eat out to help out 😅. McD then Krispy Kreme then find my way to a bus stop to do the 20 min trip to hosp. At this point, I’m no where near as bad as I had been last ambo (when a&e refused to give mag as ‘no wheeze’), but I walk in and send them into meltdown (as other than the 1 neb I’m meant to do before getting help, no salb OD). Nurse on the door was a touch slow on the uptake 😅. She recognised I was dodgy, sent me down long corridor to reception. Then realised no name, so calls me back, then discusses with hca that I might need resus... then BAM she’s chasing after me to get to triage to ask if a bed is available there 😂. I’ve arrived at reception but am not allowed to sign in, paper work handed over instead, then forced into a wheelchair to go around the corner, which I found hysterical compared to how far I had already walked. This then caused the nurse to laugh at my laugh and... you can imagine 😉😂. Handover to the doc consisted of the phrase ‘most chilled/relaxed asthmatic I’ve ever seen’ 😅😂, and me telling them that they better not squish my doughnuts even got the doc cracking up. Instant mag bag and b2b nebs, cause low PF and global quiet chest (freaked the junior out cause 0 expiratory sounds 😅😂). But cause I’d already taken pred no HydroC 🤦‍♀️. However the mag really helped me bounce back. Needed a neb afterwards so had to stay in overnight (told them if no neb within 4hrs I’m happy to home, but if I need it my con would want me in...), but left feeling good.

That lasted until the mag was out my system, and the spiral began again, aggravated by ‘Karen’ lungs, and pred never dipped below 25 😅... tho this (latest) admission was possibly the most dramatic and attention seeking 😉😂. I had been having issues for a good week or 2 prior, keeping my team in the loop, pred and a stupid amount of salb. But come last thurs (1 month since last discharge), I had a routine smear test (joy) at my GP. Start the walk there (I can’t drive, live alone and can’t financially justify a taxi for what should be a 5-10 min walk), and I know things aren’t great. Half way there and I’m wondering if they’ll tell me off for coming and have a GO review, 3/4 of the way I’m pretty sure I’ve gone quiet/silent and the question is will they even do the smear 😅. But I’m now closer to GP than home so keep going, verrry slowly 😅. Arrive, book in, face cover insisted upon so sit with my really thin buff up over my nose for 10mins before I’m called in. By this point i don’t really have a cough , and as sat no really wheeze. Nurse comes out, cleans my chair and I start to follow, at about 1/4 her speed 😅. Poor nurse has never met me before and “do you usually sound like that?!” I then get banned from walking/talking/wearing face cover everything 😅😂. Not allowed to do a PF even. My nurse calls the flu jab nurse (clinical lead nurse for practice I think) in, and calls for my GP to come down to review. GP - ‘100% silent 50% quiet, maintaining Sats but we know you do that until you can’t, hr 140-160. Ambo’, FJ nurse ‘you know you can just say no to smear, you don’t have to cause all this drama to get out of it 😉😂’, first nurse still in meltdown, can’t appreciate my sense of humour, but then the HCA who does the asthma reviews (saw me just pre lockdown) comes in for a chat as she’s on break. I’m moved to an empty clinic room so that my original nurse can see her next patient. They didn’t want to put me in reception for ‘my privacy’ I laughed at FJ nurse/GP ‘no. It’s cause I’m going to freak out your oldies waiting for flu jab cause I’m sob, wheezy, have some coughing and am not wearing a face mask. I’ve sat in reception waiting for ambo before... 😉’ ‘wellll... 😅😂😂’. Doc and first nurse get on with patients, FJ nurse goes back to flu clinic. Hca hovers chatting til break is over. Receptionist put in charge of me is now panicking cause she’s just realised what she’s been left in charge of 😂😂😂. On the plus it’s recorded in notes I’m to have flu jab ASAP (my surgery does it alphabetical, and last year didn’t even invite me so...). Anyway up to the hosp. Same a&e doc as last time. Got the mag, no hydro, my ‘dodgy’ lobe (lower left post) is being stubborn and staying silent, even immediately post nebs and long enough post mag for it to be kicking in. Regular nebs, I try to wean to get home, but still dropping to quiet when too long between. I try again, get about 16hrs before I have to neb again. Then get sent home cause ‘look too well to be here and you can do this at home’. Doc happy that immediately after neb chest was clear, AN I saw wasn’t the greatest (tho I did get to sneak in a feno/niox and scored 108 after all the treatment so 😅). So out after 2 nights/3 days, baselining 50% PF, BD nebs (the max I’m allowed at home), and needing vent on top. 35 pred (drops to 30 tomorrow), and not really able to go out cause the weather is one of the biggest triggers rn...

I’m just fed up of knowing what I need but rarely being able to get it (and having to fight basically every time). I haven’t seen my local con since Jan (was meant to have an appt during last admission but she was off sick), and the discussion of switching mabs can’t happen til that happens (they’ve attempted x3 to discuss me at the MDT meetings 🤦‍♀️). Also dislike that my lungs have returned to the habit of getting quiet/silent... I can feel it happening but you get judged if you tell that to docs and made to feel like your exaggerating unless they hear it, so I can’t really say ‘PF drops this much at home and it feels like I go quiet a couple times a week’, cause no evidence and salb fixes it until it’s too far gone... I just want the lungs I had pre hay fever season back! I have had a really supportive AN keep an eye on me throughout, but her hands are tied as she is unable to admit, which is what I need to avoid long limbos, where I’m having to wait til I’m bad enough to warrant the drugs I need, as the usual pathway (increase pred etc) I’ve done pred admission and I’m on max therapy... tried to get an add on/change to my meds to see if it helped in June-ish but no one was happy doing without my cons consent and she was on annual leave... ideal world (I’d have no issues but... 😉😅) I’d be able to call the team once things have kicked off, get a planned admission, get a mag bag and HydroC shot and be sent home again. But the last ‘hot clinic’ appt took 3-4 weeks to get, by which time I was only avoiding a&e cause OD on men’s waiting for hot clinic... then my con admitted me gave me what I needed and I was great for 3 months!

Sorry for the burble and 🌟 for anyone who reached the end 😅

Disclaimer: I do not support anyone doing what I did on my ‘doughnut’ admission ans I got a telling off from my AN! I was fed up of under treatment in hosp and having to fight for meds I knew I’d get if I lived closer to the hosp. I listened to my body and did it as safely as possible, but please don’t copy me! It’s is dangerous and doughnut endorse it (thanks for the pun Js706 😉).

[Junglechicken]

Hi Emma. Sorry you haven’t been well. Seems so unfair as you are a wonderful person and such an inspiration for so many of us. I’ve been off colour again this week but I’ve put it down to the building work we have had done (stress, dust and this terrible smelling solvent that they used which wouldn’t go away and went straight to my lungs. Had to decamp to my mum’s to escape it). Had an incident yesterday which wasn’t an attack I don’t think but my chest tightened, heart rate escalated to 105 resting and after meds was followed by a bout of coughing and lots of gunk.

I hope you feel better soon.

[EmmaF91 Community Ambassador in reply to Junglechicken]

Thanks ☺️. Hope things calm for you soon also

[Echoblue]

Hi Emma, I was glued to the read as can relate so to the A&E experience as you know! My GP & surgery AN won’t even see me about my asthma any more as they say I know my body so well if I can’t cope then A&E it is as it must be beyond their knowledge base!! 🤷🏼‍♀️🤦🏼‍♀️ would be funny if it wasn’t true!

I did laugh at the “what people do to avoid a smear” comment 🤣 appealed to my sense of humour!

All joking apart, I do get why you are so cheesed off and you have every right to. So much for the expert patient. With a condition like asthma where to keep alive you have to understand what works and doesn’t work for you, it beggars believe that we have these repeated battles when we reach that point of knowing what we need. The sooner we get that, the sooner you are on the mend..... why is that so hard for them to understand that?!

Instead they have their checklist that they have to tick off whether it is relevant or not. So much money and time wasted.

Wishing you a smoother less eventful next few months 🤞🏻🤞🏻🤞🏻😘 Pam x

[EmmaF91 Community Ambassador in reply to Echoblue]

Ha. Thanks. I started that write up before my last admission, and finished it today, and I’m notoriously bad for proof reading work I’ve written (cue a submitted dissertation where I had sentences half finished 🙈😆😅)

My GP surgery have basically accepted that for asthma they are my drug dealers. It’s only on request if hosp that I’ll go to be checked over, or if I’m there about something else 😅🙈. Have to say I did put my foot down with the ANs in hosp this time wanting to do inhaler/PF technique checks. I have had 1 review at GP in March (in person), 1 GP online video in June-ish (and an invite i turned down 2 weeks after 😅), and at least 1 ‘technique check’ during admissions by the same nurse, so when they were tick boxing and I was on 0 sleep (thanks to patients with dementia) I refused . It’s checked multiple times a year, always seemed good and they had already annoyed me 😅. On the plus tho made a friend my first night in and we had a midnight pizza party (she was ordering in and offered to share 😅😂) - was very tasty!

IKR 😂. ‘Why say no, when you can create drama about it?’ As my reply 😉😂 (promptly followed my original nurse telling me to “stop ‘exerting’ yourself. Don’t talk and DEFINITELY don’t laugh’ followed by me cracking up even more 🤣)

Yeah. I know what works for me, but docs struggle with the fact I’m max therapy at home for a few days minimum before I come in. I follow my plan, leading to under treatment cause of how my asthma presents... (I’m a reverser not a maintainer, so May revers 200-300L on PF but loose it all in a couple hours, and so the yo-yoing continues). Pre COVID my con was looking into a plan for me having witnessed how brilliant I got on 2/3 days HydroC therapy, but then...

But yeah. The tick boxes are frustrating esp when you don’t fix the boxes, as you aren’t textbook 🤦‍♀️. On the plus more evidence that it’s not all in my head (what I was starting to feel in lockdown), as people have heard and recorded the quiet/silent patches...

Thank you! Here’s to no more issues (one can dream 😉) and medics who listen if a flare occurs! Hope you manage a quiet few months too, hope you are well!

[twinkly29]

I don't like yours but right now I hate mine more so I'll swap 😂

[EmmaF91 Community Ambassador in reply to twinkly29]

That’s a hard pass from me... I know what your lungs are like 😉😂

[twinkly29 in reply to EmmaF91]

Rude.....😅 (But yeah fair enough!)

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

We could all swap with certain healthcare people who don't get it...

[EmmaF91 Community Ambassador in reply to Lysistrata]

I could probably get behind that 😅😂. Tho I bet they send them back and demand a refund after a couple weeks...

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

At which point we tell them there is nothing wrong with the lungs so they can't exchange or refund, and are they sure they're not just a bit stressed?

[1974lovejoy]

Got to ask ... did you get an invite back for the smear 😂😂😂😂?????

Joking aside .. what a nightmare !! And yes we can relate in some way .. more so with the silent bit !!! But often they say all is ok as no wheeze !!! ( I’m usually retaining and silent and never wheeze) can’t actually say much as limited sentences at this stage !!!! I’m

Tempted to pack a chalk board in my bag !!!!

Thank you for making what is a horrid experience some what jokey!!! Seriously .. take care of yourself though .... keep your chin up and dig deep !!!! xxxx

[EmmaF91 Community Ambassador in reply to 1974lovejoy]

😂😂😂 they rebooked me whilst waiting for the ambo... question is what to do next time to ‘up the anti’ 😉😂😂 I’m up there on Friday of ‘emergency flu jab’ as I haven’t been invited yet and I’m ‘urgent and probs need it more than everyone I’ll see today’ 😂, so at least I’ll be able to reassure them I’m ok 😅

Yeah... GP calls it as quiet/silent. Para turns up ‘don’t sound bad’, gives neb and afterwards ‘you sound worse now than you did earlier!’ Yes. Cause I’m not quiet anymore... 😅

Do you have a hosp asthma form thing? I have one which I wrote (personal details, diagnosis and meds/allergy etc... everything medics want to know 😝), where I also described how I present and my preferred treatment plan 😅😂. On the last page is a ‘fill the blank’ description of what kicked it off and what treatment I’ve done etc, which goes down a storm. They get all the info whilst I can’t breathe and usually the first time I have to tell people the story is admitting doc, so way less repetitive for me 😅😂😂

It’s laugh about it or sit rocking and crying so... 😉

Thanks and you to! Hope you’ve been ok! Xx

[mylungshateme in reply to EmmaF91]

Aww emma so sorry lovely if you can't get through to them no wonder we cant. I really don't think you can up that performance for next smear...🤣😂🤪. I hope you get to see con soon and get mabs changed. Lungs are like cars, great when they work....😆

[Wheezycat]

So sorry to hear you are having such a frustrating and rough time! Hope you get a new set of lungs soon! (Here I would put in a winking emoji, but I don’t know where they are! I am an emoji learner!)

[EmmaF91 Community Ambassador in reply to Wheezycat]

Thanks. Just did my splurt it update which I do if I haven’t fine for a while (other times I might do a post or 2 per trip... the last 2 warranted their own posts cause lots of amusing things happened but hey how 😉😅😂). Hope you’re well

[Wheezycat in reply to EmmaF91]

Yes, I am in an extended fine period. Long may it last. As I (we) have been so careful there hasn’t been much chance to pick up any virus. However, I dread the cold season, as cold and I aren’t good fellows any more (having gown up pretty far north in Sweden, long way north of Stockholm, in a place where polar bears wander the streets and we all live in igloos, it seems pretty ironic). My meds have been upped, so that may make it easier. And I finally had a clear sign my lungs aren’t much into rainy weather either - I could feel storm Alex arriving, sort of.

However, all of this is trivial compared with your tribulations. I do find it frustrating, and sometimes frightening, but my lungs aren’t into dramas (thank goodness!), more the ‘we shall wear you down’ variety of , well , asthma wearing me down. But not, on the whole, right now.

[Troilus]

Hi Emma,

Well have are/going through the mill. I wish I could offer some advice, but I can’t think of anything!

You have had a rotten time of it, made doubly worse by medics who won’t listen. If you find a cure for that, then please let me know.

I think it is high time that some drs realised that when you live with something like this, you tend to get to know it very well and some of us can predict what our asthma is likely to do and through experience, we also learn what it is that gets it back under control.

It’s a bit like a naughty child and mum knows best!

[Poobah]

Times like this I wish I had a magic wand. Take care Emma and I hope for a better season for you. 🤗

Here's to a better 2021.

[17Rose]

Hi Emma, you are always such an inspiration and font of knowledge to us all. You rant away girl as we all understand. Like you I'm up and down on Pred, on max therapy at home, GP is brilliant but doesn't see me for asthma just deals the 'drugs' as says if I feel bad enough then I know I need to be in A&E.

Weather is my biggest trigger, especially wind and rain, but can be anything. Like you I go into silent chest, rarely cough, oxygenate well until suddenly drops when getting too tired.

I have a plan from my consultant which most drs follow now ( after several years of battling) but still get other consultants or drs who know 'better' and think Pred will solve everything and wont follow the plan as they know how to 'fix me'.

I can occasionally get away with a stat dose of hydro, mag, btb nebs etc and discharge but on most occasions it follows with an admission and then 3 to 4 days of hydro. It's really the only thing I respond to and lasts me about 2 to 3 weeks til I start to decline and end up back in again. So I'm very lucky in that I get the hydro ( I know it's not great and I'd rather do without it but needs must as not eligible for biological due to low eosonphyll count 😧)

I really hope you start to get on top of it again but you rant away if you need to we are all 'with' you. Some of your funny posts have me crying and wheezing with laughter so although they bring on the asthma, def cheer me up!

[Jollygood]

Oh wow, that all sucks. I'm a novice but the pollen & weather this year have been unreal. Best wishes that things improve for you soon. Let us know how you are in a few days xxx