No diagnoses just meds thrown at me

I have had various PEs and my severe breathlessness was always put down to this and anemia (although breathing probs started long before anemia) 

Recently (6mths ago) i was diagnised with acute bronchitis, severe wheezing and put on steroids (lots of them) and inhaler after inhaler as much as 10 puffs in one go and also nebulisers.

However I went for a Spirometry, In the waiting room, I had to relieve by taking my prescribed ten puffs as the walk to the office had left me unbearably out of breath and wheezing and coughing..settled down a little but not alot and eventually managed the spirometry which came back no COPD or asthma as my reading was 89% but I had fluctuating readings - I was told by a friend of mine I should not have taken the salbutamol ten times before the test - I should have advised them I used my reliever - but it didnt say on my appt letter refrain from taking reliever prior...there were no instructions to follow

anyway two mths on from the spirometry, I still wheeze badly worse than my mother who smokes over 30 cigs a day, Ive never smoked

I cant walk more than ten yards without severe discomfort and again Ive just been thrown another inhaler to add in to the mix..so you can see my frustration, something is causing my problems - the inhalers "Clenin and salbutamol dont work for long" and as much use a a chocolate fire guard - you can hear my chest wheeze as I walk or sit, I cant talk for long sentences and I am at a loss - My nephew was recently diagnosed asthmatic with no spirometry and no wheezing, just pains in his chest and yet I cant get a diagnosis when you can obviously hear me before I even arrive ...anyone else in the same boat ???

 

I think you need to see a pulmonologist.  You could be suffering from several different lung ailments.  I was recently diagnosed with pulmonary hypertension.  Still another lung condition rarely discussed.  The shortness of breath was tramatic before treatment.

Best my doc will do is a referral to respiratory doc..more months of waiting as there arw no appts til late sept on choose n book/nhs ..despite me asking for years (8plus)

the breathlessness is also frightening. I Turn over in bed and that even sets it off

But thank you..hope you stay reasonably well

Hi I am sorry to hear all this,  it must be very frustrating for you.   Have you ever had an x-ray done?   If not insist they do one.

If nothing shows on that ask for a CT scan.   You might get nowhere with this but it is worth asking.

The trouble is medical professionals treat us as though we are stupid or are exaggerating or are a hypochondriac!   I hope you manage to get it sorted. 

Is there anyway you can take someone to appointments with you who can verify your symptoms?  That might help.   Good luck and let us know how you get on  Bev x

I had an xray and just says no significant change..whatever that means..I do have decreased air on one of my lungs..they assume is due to blood clots..have had three query four

my gp was aware i have a problem as like i say you can hear me before I arrive and the rattle has been heard at home at rest..she has just retired and the new gps are useless to be honest..I dont think they read your full history .. they just like to treat you themselves and throw meds down your throat... im satisfied an older wiser gp in my practice sees sense and because of my history referred me....its just frustrating that 4mths under wet behind the ears new GPs in my practice left me with well we dont know what it is ?

Hi well there is obviously something going on there if you have decreased air in one of your lungs and you are in such a state.   X-rays don't show everything but a CT scan shows a lot more so in your place I would demand one.   Good luck.  Bev x

That does all sound very worrying and I can sense your frustration.

Your friend is quite right, it was pointless to have a spirometry test with all that medication in your body, obviously it would obscure an accurate result.    

I'm amazed that you've been told to use any inhaler 10 times in one go, but I've never had chronic bronchitis so I could be wrong about that.   

You need to URGENTLY contact whoever sent you for the spirometry test, tell him/her about the amount of medication you used immediately before it and arrange for another one WITHOUT medication.    The 89% lung function certainly doesn't fit with your severe breathing problems.   I've stabilised for 3 years at around 70% lung function and my breathing issues are nowhere near as bad as yours.

I'm not a doctor but it sounds to me as if there's a fair chance you could have quite advanced COPD.

I wasn't aware anemia could have such a severe effect on lungs, and surely that's been treated by now anyway?

If you live with your mother and she's been smoking heavily around you for years that can be as bad as or even worse for your lungs than if you'd been smoking yourself, because the smoke going into her lungs is presumably via a filtered cigarette, the sidestream smoke you would be inhaling is unfiltered.

Finally, what is a PE?

Please, go back to whoever referred you and get another referral

Get another appointment & tell them how incapacitated you are, that you cannot finish a sentance, & that you wheeze constantly.  Is your sleeping impacted ?

Is your ability to eat a meal impacted ?   If these 2 *quality of life* activities,

eating & sleeping are difficult then you need a better evaluation.

Give them a concrete complaint, they should address it !

PE ?   physical exams ???

Maybe, who knows?

Good reply Mary

Sorry but you need to change your doctor, this is not the way to go.  A nebuliser is only used for severe COPD you don't need all those meds.. never known anyone advised to take all that stuff..  8 puffs..no way 2 that's all... I have a friend on my page who is brilliant called Derek he has COPD and will advise you just type my name in F book...anne cumpson... 

Thank you everyone

firstly

PE is pulmonary embolisms for those that asked

according to my new gp..ten puffs of salbutamol is equivalent to a nebuliser ..i only take if severe going down in puffs til I can manage with 2/4

I wish I could take a photo of my inhaler box to show you all the dose it states I can start at and reduce too

My anemia isnt controlled as I cannot tolerated oral iron...but yes it can cause alsorts of problems such as oxygen that circulates in blood .

cramps etc

Fbc ranges between 6/8.5 at 6 they transfuse blood or iron supplements ..my iron store is almost zero..and yes its being investigated as to why I run low

Im just confused that i get we think its this...or we think its that..??? take this med..take that med.

Come back in two weeks

So I have asked for a referral...

The other questions on my discussion.

A...yes Id told both the examiner at spiro and also my new gp id taken the inhaler .. no one batted an eyelid

B. Yes sleep etc affected...told said.GP i am knackered...my bags under my eyes would be charged for excess baggage..ha ha

I asked for a scan...wait til youve seen resp doc

Spiro was fluctuating....I had as.low as 75 up to 89 when the doc gave me results at surgery

she said sounds like restrictive rather than obstructive...and you have to expect some degree of damage due to the PEs

Ive started another brown inhaler recently clenil 2 puffs twice a day.....as a bit of effect but not the effect that I wanted.. i think we all would like to be symptom free

Seriously tho... its been going on since 2000 only worsening since feb 2015 when I contracted bronchitis

Im happy ive finally got a referal despite a.3mth waitin list

So hopefully I may just get some answers

And thank you to all that reply

Dee

Hi Dee I hope you get some answers asap.  Has anyone mentioned a spacer to you?   They attach to your inhaler and you can absorb more of the medicine as less is lost.   The NHS can supply them so ask your doctor.   I have been told these are as close to a nebuliser as you can get..  

Just a thought.  Bev x

Yes i have a spacer for home use....i have considered taking it out with me when I have to go out..but it doesnt fit in your pocket !!!

Thank you Bev

Hi 23deedee66,

By the sounds of it, you have a lot of risk factors that could be contributing to your condition. It sounds as though you may have gotten a lot of second-hand smoke from your mother, which does put you at increased risk of chronic bronchitis and COPD - these can cause breathlessness and chronic cough where you bring up phlegm. 

You mentioned that you have been diagnosed with anaemia in the past. If this is not monitored and controlled, anaemia can lead to breathlessness, because your blood isn't able to carry oxygen in it as well as it should. 

You mentioned also that you've had multiple PEs - pulmonary emboli - in the past. Pulmonary emboli block off blood vessels in the lung, and can kill off small areas of lung tissue. This can be quite concerning, as multiple small pulmonary emboli over time can lead to a condition called 'pulmonary hypertension', where the blood pressure in the lungs is very high, because so many of the small blood vessels have been 'shut off' by the emboli (blockages). Pulmonary hypertension is a very serious condition, and can lead to other complications - such as heart problems, which may be evidenced by swelling in the ankles, for instance. 

The lung problems involved in pulmonary hypertension can also lead to breathlessness, because not enough of the lung is functioning properly, so you need to breathe faster in order to get the amount of oxygen that your bosy needs.

Asthma is always a possibility, however, if you are taking a salbutamol inhaler, this should help with it. However, sometimes asthma can get so bad that it no longer responds adequately to salbutamol alone, which is when doctors introduce a 'preventer' inhaler - an inhaler than reduces the 'inflammation' of the airways, helps to settle down mucous production, and reduce any swelling in the air tubes. This makes it easier for the salbutamol to do its job of properly opening up your airways, and making it easier to breathe. 

Essentially, your spirometry results will not be an accurate reflection of your lung function, because you had to use your inhaler so much before taking the test. You should definitely discuss this with you GP as soon as possible to arrange for a repeat spirometry without inhalers before hand. This may take some organisation from you GP, as it doesn't sound like you can get around easily without them. 

If your GP has said they will refer you to respiratory specialist, this is good, as this is definitely what you need. Unfortunately for you, the wait is quite long... 

Other parts of your lifestyle should also be taken into account - how old are you? what is your weight? what do you / did you do for a living? Exposure to any pollutants can cause lung problems, being overweight can make lung problems worse, and your age can give a good indication about what conditions are more or less likely to be affecting you. 

Essentially, I would not trust your condition to be fixed by any spot diagnoses conducted over the internet, and I am certainly concerned about the extent to which your breathlessness is effective your life. It is always a warning sign that things are getting quite bad when you start to get breathless with minimal / no physical activity.

Your first point of call is to see your GP, or a new GP, and request a repeat spirometry. They will need to arrange it in such a way that enables you to take the test without using your inhalers first. Good luck. 

 

You know alot about your condition Dee, very best of luck to you getting

more solutions.   Patients with breathing issues can get so *worn out* trying to get things resolved since they are working with less oxygen in their body to begin with !  Let us know how things when you see them again,  sending positive *thoughts* your way.

morning jude65855

Was just reading about 23deedee66's respiratory illness, well it certainly must be what with the wheezing ect, i thought you might like to know that PE  also stands for pulmonary Embolisim if I've spelt it right! However yes I agree with what some of you have said! The symptoms need attending to urgently as it will eventually become worse unfortunatly Sooner the better!

Morning 23deedee66

I'm sorry what your going through it is very frustrating when you know there's something wrong but haven't got a name to it even,there is definatly something very wrong that needs seeing to urgently if need be I'd go directly to a hospital & mention you've been to see a GP at your surgery & your not getting any answers & tell them how you feel how your condition is effecting you definatly if you can take someone with you, if you don't have anyone then an advocate will they support you & speak up for you! I don't know if you have a laptop or a mobile phone with internet if you have then please for yourself look up advocacy & what they do you can self refer your self you ring their number & if not available some one will get backin touch with you to find out how they can help you & take some details & arrange an appointment, very good they are I have one myself I'dbe like a headless chicken without one! I wish you the very best please don't wait another day this is urgent! Please let us know how you get on we are allhere for you! Godbless