asthma/infection/copd confusion

[lucie982]

gonna just pop a diary of events up and and explanation below. Im so tired of attempting to even get reassurance let alone treatment from the gp.

4th June started 5 day pred after a week of feeling tight and double dose symbicort not helping

7th felt more unwell coughing yellow mucus started amoxicillin

10th called Gp as still very wheezy told no more steroids/not allowed ventolin due to smart regime and to sit through the breathlesness and finish amoxicillin

12June couldnt cope so went to A&E diagnosed severe asthma attack and infection not responding to antibiotics. Given IV pred a few nebs, 5 day course pred and change of antibiotics and some ventolin to take home. Was on oxygen for a few hours as sats were low.

14th June another bad attack went to A&E sats were low again, was given nebs and a Magnesium infusion. Kept until i could maintain sats above 94% Dr noted infection markers were slightly lower and slight improvement in xray.

17th spoke to Asthma uk nurse as i was a bit concerned still wheezy and breathless, she explained go steroud dose may be too low30mg and to explain to gp that 40mg would be better, called gp and again wouldnt budge 30mg 5days but felt better throughput those days

24th June still breathless just walking across room, tight feeling, coughing very green/brown mucus called Gp/pharmacist and told i probably have copd, gave another week of antibiotics said shouldnt need steroids as i dont sound wheezy over phone and arranged a nurse to call in 2 weeks.

i feel utterly awful still. Sitting on sofa i can just about keep my sats at 95% colour of mucus is lighter but tastes vile feel a bit better for a little while after using inhaler but i just feel so tight. Since starting doxycycline i get a random fever every evening.

Do hospitals send a summary of treatment and tests to gp. Pharmacist said they requested a repeat xray in 6weeks but questioned if i had an xray at hospital. Could A&E have mistaken my symptoms and tests or not been clear with me on what they saw. Pharmacist was very abrupt and said he hopes this is a wake up call, i stopped smoking but started vaping 8 months ago. Was tested for COPD 2yrs ago thanks to years of similar issues(intermittent) all came back normal spirometry and ct scan. Had no Asthma/breathing issues since that time.

I feel like he has basically requested i dont call again and that my breathlessness is to be expected. Im 37yrs old and virtually unable to care for my child. Im trying so hard to get up and move around its just agony. Can they refuse to see me i dont feel telephone consultations are enough and going to A&E is such a big risk

[twinkly29]

Sorry you've not been well - and it's still ongoing. A few thoughts from reading your post....

- no idea how a GP or pharmacist can say you "probably have COPD" over the phone

- steroids being refused because you have no wheeze is harsh because some asthmatics never wheeze and still are given steroids. Furthermore no wheeze over the phone....😳

- do you find the ventolin helps more with symptoms than the symbicort, eg during the day? If so, I'd make sure you take your baseline dose of symbicort spread across morning and evening (eg 2 puffs am, 2 puffs pm - but this might be different for you) and then try ventolin for now when you're symptomatic between, instead of extra symbicort puffs. Of course ask the AUK nurses to check this is ok if you want to but I was on symbicort smart but am actually better on symbicort plus ventolin (well terbutaline in my case but similar idea). I'd suggest talking to your GP but that seems not to been very helpful - just frustrating!

- infection wise, it can take many weeks to get over something and, even once you've found the right antibiotic and the infection has cleared, the breathlessness and coughing can remain for a long time, as well as the generally feeling wiped out etc. A bit like recovering from flu takes a long time.

- pharmacist is rude for what they said about it being a wake up call. No it wouldn't have helped but you've already given up and anyone can get a nasty infection.

- do you have an asthma nurse at your surgery? Might they be more useful than your GP who doesn't seem very caring or approachable?

- do you measure your peak flow? How's that doing?

Hope you feel better soon - and apologies if my rambly questions are just rambly!

[lucie982 in reply to twinkly29]

Thankyou so much.certainly not rambling yes salbutamol helps with the tight feeling a lot, pharmacist commented my steroid inhaler dose is low, but hes the one who prescribed and i usually keep very well with that dose. Its a shame the pharmacist is the one who usually treats me better that the nurse or gp.

Im confused as to what infection it could be, pneumonia wasnt mentioned but my symptoms fit i suppose Hazy consolidation right lower lobe. raised white cells, heart rate was 120+ until day 2 of doxy so thats an improvement for sure. The breathless feeling is just scaring the life out of me. Ive been diagnosed with bronchitis so many times since my asthma diagnosis age 15, ive never ever felt this bad.

If theres one thing the gp surgery should know is that i will not use pred unless totally neccessary, im the devil on it, i have panic attacks i cry and shout and 9 times out of ten insist to the gp that i will die if i take any more lol i hate it but i know its needed. Covid has really brought out the worst in my surgery. Ill speak to nurse and see if she has any wise words. The plan is to find a new gp when we are out of this mess,

[twinkly29 in reply to lucie982]

Pneumonia is just a type of infection. It could be that even though they didn't say it, or it could be another type of chest infection. I think it depends where in the lung it is or something. But my consultant said that it's no different to other types of infection - it's just the name is feared. I guess some infections of all types are easier to get rid of than others.

Measurable progress is good - eg lower heart rate and so on. It's hard not to worry etc but the more you do, the worse you'll feel as anxiety can mimic asthma in symptoms - you've got enough going on without that adding to it!

Your pharmacist prescribed your Symbicort? Do you mean they dispensed it? Surely a pharmacist shouldn't be deciding what people should take? If it's decided that your Symbicort dose is low (what is it?) there's plenty of scope I'm sure for increasing inhaled steroids to hopefully get on top of things - however if it's post viral/post infection than hopefully they've allowed to offer.

[Js706]

If you had consolidation on your X-ray along with raised infection markers on your bloods then it will have been a pneumonia. But as twinkly29 says, although it is a nasty infection, pneumonia basically just describes where the infection is (so pneumonia is an infection within the lung, bronchitis is an infection in the bronchi - the tubes leading down to the lungs, sinusitis is an infection in the sinuses, etc). And while it has a horrible reputation the vast majority of cases are diagnosed and treated in the community with antibiotics

The X-ray changes that you get in pneumonia can take up to 6 weeks to go, even when the infection itself has cleared, which is why they'll have asked for a repeat X-ray after that amount of time.

In terms of recovery it can take a long time to get over though and people are often told that it can take up to 6 months to feel completely back to normal afterwards. The British Lung Foundation have a good little page about what to expect during recovery:

blf.org.uk/support-for-you/...

[twinkly29]

Lucie, I wouldn't normally advise people to just up sticks and move GPs on a whim....but is there another surgery near you? None of your care seems appropriate, supportive or remotely caring which is not right. A friend has just reminded me that it might not be easy to move at the moment but worth investigating maybe?