Really should introduce myself after ... - British Lung Foun...

British Lung Foundation

48,149 members β€’ 57,256 posts

Really should introduce myself after commenting on posts I'm not a stalker honestly!! πŸ€£πŸ˜‚

mylungshateme
mylungshateme
β€’29 Replies

Hi all πŸ™‹β€β™€οΈ,

So I'm on AUK so some may know me from there. When I first joined last year my diagnosis was severe uncontrolled asthma, allergic asthma, eosinophilic asthma, sinusitis, reflux, hayfever blah blah the usual that go with it!

Had asthma since 11, the "normal" kind problematic at winter and exacerbated by hayfever but not a real problem. Few rough spells needing nebs at gp so avoided hospital 😁.

Prednisolone was needed more an more gp referred to hospital first appointment nov 2019. Was going down route of biologics as they tried everything.

The whole of last year since dec went from bad to worse asthma wise struggling at work I'm an RGN, was exposed to covid dec an feb 2020 before it was a big thing and before testing.

Now, coincidence my asthma chose the very same year of global pandemic to play up.. maybe.

I had to reduce my hours at work, then end of April told I'm CEV by respiratory this was a shock and where I was told about my severe asthma diagnosis etc.

Aug B/H ended up being admitted to hospital for 5 days, where my world flipped over... my cons ref me to severe asthma clinic as said he was out of his depth... new cons said I have BPD I said about my theory of long covid he stated that's 1 of the main symptoms with tachycardia which they were were worried about me being tachy 156 at rest, resps 46... then doubted I had asthma... and this cycle is still going on everyone says a different thing!!

I'm fed up!! Gp diagnosed long covid last month, cons disagreed πŸ€¦β€β™€οΈπŸ€·β€β™€οΈ as no lung scarring.

I'm now day 3 no pred whoop to try an have mannitol test!!!

Sorry for long post prob missed the important bits out πŸ˜‚πŸ€£πŸ˜‚πŸ€£.

29 Replies
β€’

Welcome to you and hope you’re getting all the help you need. Long covid seems to be a problem for many.

Take care xxxx

Thanks! XπŸ™‚

Welcome, I don't have asthma so don't use AUK myself, hope the medical professionals can come to an agreed course of treatment that will help you now and long term. Best wishes

mylungshateme
mylungshateme in reply to Bkin

Thank you. πŸ™‚

Welcome to this forum. How frustrating for you to have various diagnoses being presented and then snatched away. It is all very familiar to me. Did you ever get a positive Covid test? Or was it surmised from your symptoms? What test showed no evidence of lung damage? What is BPD? Does it make sense to you?I would love to hear more of your story if you felt comfortable telling it.

Kate x

Oh absolutely feel comfortable you can ask me anything just on a lil walk with toddler so will reply properly later! πŸ™‚ x

Hi kate, So I never had covid test initially as they weren't around back then. But basically we had lots of patients suddenly deteriorating with what we thought was flu but negative swabs.

Staff were all ill dec. Then jan/feb happened again but worse we now knew a little of covid but nowhere really prepared for it or had PPE for it and certainly weren't testing.

This time "something" looking back probably covid floored me. I was Ill I remember we were all coughing, felt drained, hurt dizzy etc. I was bed bound for days. Off work attempted to go back twice but both times went off sick again sweat pouring off me.

My asthma horrendous. By april I could barely walk could no longer carry my then nearly 2 yr old.

Been on pred 40mg for over a year, dose up an down since oct reducing down today I'm day 3 pred free!! So can have more tests.

April resp nurse thought I had covid but test was neg. I've since had 4 negative covid tests last 3 weeks ago.

As I have the SOB and tachycardia (only since last dec). Had antibodies test sept but negative which it would be as too long a gap and not everyone produces antibodies.

My first ct scan was aug on lungs no scarring again if covid, after few months you would expect to have settled. Had spirometry but was good. I don't wheeze, I don't de saturate below 95%. Peakflow generally it's own little stable ish routine.

I'm what the asthma world call a unicorn meaning not textbook and complex!! πŸ˜‚πŸ€£ so yes god knows what's wrong with me..!!

Oh and BPD is breathing pattern disorder. I've been referred to respiratory physiotherapy but guess what? No one in post! Was ref to clinical psychologist too but they agreed only thing causing me anxiety was a bad appointment I had with a consultant!!

I've actually asked for a 2nd opinion with different trust. And breathe!!! I just seem to be going round in circles an still can't work, still shielding 1 step forward 10 back. Today I could walk but tomorrow may not be able to walk upstairs or shower. Its frustrating πŸ€£πŸ˜‚πŸ€ͺ. X

Bkin
Bkin in reply to mylungshateme

Have you been tested for ME?

mylungshateme
mylungshateme in reply to Bkin

Interestingly no, but an M.E sufferer also asked me that on AUK. And that was my very first thought. I just worry if I keep coming up with a possible diagnosis they'll think I'm round the twist and desperate to be I'll. Does that make sense? Some cons have made me doubt things so much it really knocked my confidence I'm also an ostrich the day I was admitted I was at work.. the day before respiratory team said I can't work.. it was the guys on AUK being very blunt with me that i left work an drove to hospital an collapsed in A+E then was shocked when they wouldn't let me home πŸ˜‚πŸ€£. I always think I'm fine. πŸ˜†πŸ€­πŸ˜ or in denial or both πŸ€£πŸ˜‚. X

Bkin
Bkin in reply to mylungshateme

Perhaps just ask your GP to be tested for ME - leave the consultant out for now. You need to know the cause of the problem in order for it to be treated properly.

nhs.uk/conditions/chronic-f...

meassociation.org.uk/

mylungshateme
mylungshateme in reply to Bkin

Thanks for link lovely πŸ™‚

Hello and welcome 😊

Why thank you! πŸ™‚

Thank you for all that. What a nightmare. Rare diseases are known as Zebras in the medical world so Unicorns are off the rare scale!!!I am gathering tales from patients for some writing I have been asked to do.

Is it all right if I private message you?

Kate x

Hello little lovely 😊 It’s nice to see you here!!

When do your sweets turn up? What did you choose? Flying saucers πŸ›Έ are one of my favourites!

That’s great you’re now 3 days no pred! How you feeling? Really hope you manage to stay off them!

β€οΈπŸ˜ŠπŸ€—

Dee x

Hey hun, do you know what I actually cant remember πŸ˜†πŸ€ͺ this is what happens when you randomly order sweets in the middle of the night!!!

Sun my god I was a grump poor twinkly was like my therapist πŸ˜‚πŸ€£ annoyed with people not social distancing so when I do go out feel seriously at risk, annoyed with covid, shielding, my lungs but we had a moan, then laugh an I got over it!! But my mood fine again last night literally couldn't sleep so think pred withdrawal as hot flushes too. Can't believe I'm off the pred!!! Whoop.

So shielding extended until 31st march...

How are you? B.M's stable, eyes ok? Xx

hi gosh you sound like me i am complex as they call it cos they all wont agree on one certain asthma. its really frustrating isnt it that theres no one doc that can just say its this asthma or that asthma. the sats and wheeze i am sick of hearing its not all about that but they go off that which is annoying, asthma has many forms and extra layers of chest probs ask any ashtmatic or copd patient so your not an your own but yous sound very cheerful and welcome btw haha hope your feeling bit better

mylungshateme
mylungshateme in reply to Shezxx

As much as I'm sorry your a tricky unicorn too I am glad for selfish reasons!! πŸ€£πŸ˜‚πŸ€ͺ honestly the advice and support from this and other site is amazing I wouldn't have got through last year without everyone on AUK. It's a mind field asthma isn't it. It's so not text book an makes me so cross hearing cons talk about a wheeze, and sats. 😑😑.

I mean aren't they meant to be the specialist? I really feel we need an advocate at all times. And when you can't breathe and have to fight for your voice to be heard πŸ™„ or they're asking silly things like do you have an inhaler? Have you used it? Umm no I didn't think of that actually thanks!! πŸ˜‚πŸ€£ x

Shezxx
Shezxx in reply to mylungshateme

Yes your so right i mean how many times ive heard LET ME WATCH U USE UR INHALER? WTF, had this since i was born now u want to check all these yrs later are u kidding me? i know what you mean i love the people on here you get more help than own gp and cons the asthma nurses are great and all on here really helpful x

mylungshateme
mylungshateme in reply to Shezxx

Hey I knew I recognised your name we were chatting on AUK about being upset by cons few months ago! I'm only just getting over that trauma, I did listen to you all though and put in for a 2nd opinion and was accepted just waiting on appointment. Also the lead in respiratory rang me and apologised for reg.

But yes the support of fellow friends on forum that get you through, build your confidence to believe in yourself and trust your instincts. Also when not to listen to cons πŸ€£πŸ˜‚. Gosh isn't it exhausting being a patient and having to fight for everything and with covid cant even have back up at appointments. Still onwards and upwards just keep smiling. XπŸ™‚

So sorry to hear all you have gone through. Hoping that a correct diagnosis will soon be made so that you can get more successful treatment.

Thanks but its trivial compared to most peoples battles so I am lucky really. πŸ™‚

Hi there and welcome to the site Getting a disgnosis seems to be difficult but getting the right treatment sometimes is impossible. I was treated for asthma for years until my doctor left and the new one sent me for ct scan which showed i have bronchiectasis and not asthma, two different diseases and treatments. I wish you luck and hope that you feel better soon x

mylungshateme
mylungshateme in reply to Izb1

It does seem a lot of people are diagnosed with asthma which isn't always the case. It's the not knowing I find hard as no end in sight? Or treatment plan. I love a plan! Thank you for your reply. X

Lets hope you get a plan soon x

Cor blimey- what a saga. I hope your lungs can soon be brought into a more reasonable frame of mind. Best wishes.

Aww thanks yea they're really not liking me atm πŸ˜‚πŸ€£πŸ€ͺ🀭 x

I'm not sure whether to offer your lungs a virtual hug because they obviously feel very rough at the moment or a virtual shaking to tell them to pull themselves together. Definitely a virtual hug for you. xxx

πŸ€£πŸ˜‚πŸ€£πŸ˜‚ a telling off and tell them "to sort it out.." would be good! Ah thanks for virtual hug sending one back to you. πŸ₯°πŸ’«.

Isn't it funny how different a year becomes, a year ago we would have laughed at a virtual hug, and said "stay positive" now we find ourselves saying " stay negative!) Haha. X

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