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New to COPD

Mo13 profile image
Mo13
32 Replies

Hi All

Just been given diagnosis of COPD - at least GP receptionist advised that chest x-ray showed 'background changes of emphysema'. When I got to talk to GP (I had to call, nobody called me with results), she was very dismissive, told me xray showed smoking damage and that I would need to have breathing tests with practice nurse (however, no appointments available until the new year). This would determine level of 'chronic bronchitis' and determine if I can have any treatment.

Probably like everyone who found themselves in this position, I have been on the internet since and if googling was an Olympic sport, I would have the gold!

I have pain in my shoulder and upper back right side - again GP was dismissive and told me to take painkillers so I don't even know if this is related or not. In the interim, I have booked an appointment at a local therapy clinic which specialises in massage etc to see if that can give me some relief.

So, apologies for the rant, but feel more than a little let down by my GP.

Do other sufferers find GPs supportive?

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Mo13
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32 Replies
1968 profile image
1968

Hi and welcom, if you feel your not getting the right support or answers from your doctor, is there not another doctor you can see at this practice?

Call the BLF number tomorrow and ask to speak to a nurse, best not Google emphysema as you will get all the wrong information.

If you smoke you must stop now, if you don't it will get worse a lot quicker, change of life style is required now, eating\exercise\lung exercise and staying positive with all your new found information.

Emphysema-COPD is not a death sentanance it learning to live with it and not die from it.

David1968

Mo13 profile image
Mo13 in reply to 1968

Thanks David. Effectively stopped smoking in the last week so hopefully that will begin to help. Will call helpline tomorrow but have so little info at the moment, don't really know the extent of what I am dealing with.

Wisper profile image
Wisper

Hello Mo, unfortunately my GP practice have been nothing but dismissive and unkind. I was diagnosed with COPD in October this year although my xray was clear. I was thrown Frostair and told my review would be next year. In the meantime I have had 3 exacerbations within 6 weeks and been given medication over the phone, despite asking to see a Dr in person. I have been made feel thoroughly deserving of my illness and I am sad as the symptoms only displayed after giving up smoking, which will be a year almost to today. All I ever get now is, well you were a smoker what do you expect! Franky even the thought of speaking to someone in the practice makes me feel physically sick. I really wasn't aware that a caring profession, and I use the word lightly, could be so judgemental and down right nasty! I too am sorry for the rant but you can probably tell your post struck a light bulb moment with me. You are not alone. And I, like you am still trying to find alternative therapies in addition to my prescribed one's to help. You take big care and I hope you find some relief soon.

Mo13 profile image
Mo13 in reply to Wisper

Yes, definitely feel like a leper cos I have smoked. Makes me mad and I do understand your reticence to get in touch with your practice - you just feel unworthy of their time and care.

in reply to Mo13

Don't blame yourself I was diagnosed with COPD in 2006. And just stopped smoking last year. Someone on this site told me only 1 in 4 smokers get COPD we just happen to be the unlucky ones. And also people who have never smoked can get it. Take care

stilltruckin profile image
stilltruckin in reply to

ncbi.nlm.nih.gov/pmc/articl...

Quote:

'Although never smokers were less likely to have COPD and had less severe COPD than ever smokers, never smokers nonetheless comprised 23.3% (240/1,031) of those classified with GOLD stage II+ COPD.'

Mo13 profile image
Mo13 in reply to stilltruckin

That's a very interesting article. Think a few of the less supportive GPs need to be reading this.

Thanks for that. Much appreciated.

Mo13 profile image
Mo13 in reply to

Thank you.

velvet55 profile image
velvet55 in reply to Wisper

Hi Whisper

I think a complaint is in order about your treatment by your GP.

Have you seen the practice manager and explained how your GPs attitude is making you feel.

If you can't bare to see them, write a formal letter of complaint to them

Good luck

Velvet xx

Wisper profile image
Wisper in reply to velvet55

I think that is very good advice Velvet, I kept putting it off in the hope it would improve but it hasn't. They have left me little choice. Thank you xx

Kim2402 profile image
Kim2402 in reply to Wisper

Oh it was a relief to read your rant ( though I am sorry you had to have a rant ) but I have had the same sort of response from my GP practice and I too avoid contacting them now as I just get so nervous and find myself apologizing for bothering them every time I ring even though I only ring when I am feeling really poorly...I am having a bad winter and like you have just been given medication over the phone

Mo13 profile image
Mo13 in reply to Kim2402

Interesting that another sufferer gets this treatment. Smoker or no is not the point.

jarc13 profile image
jarc13 in reply to Wisper

unfortunately those type doctors can be found everywhere. while i was still smoking i had a terrible case of bronchitis. went to new doctor as old doctor had retired and she told me she could smell the smoke on me across the room and where i was a smoker she wasn't about to give me any medicine as i had brought it on myself. a few days later, i coughed wrong and fractured a rib (didn't know one could do that coughing, i had twisted as i coughed) and ended up at the emergency room and they put me on double strength medicine. i never forgot that first doctor. fortunately i have a caring doctor now and its been 16 years since i quit so don't get that reaction any more. it was so wrong.

Mo13 profile image
Mo13 in reply to jarc13

Seems to be a pattern forming in that a lot of sufferers have been belittled and made to feel guilty.

In a word Mo - no! Mine is dismissive of my illness as well. I think strangely enough though that this can be a good sign as it means you are not severe or anything. If they were too interested I would worry a bit :) Can you change your doctor to one more supportive. if you are at a group practice you can see anyone you want.

I learnt most of my information from this site and other reputable ones, so stick with us as between us we have a wealth of knowledge about every lung disease under the sun. I will say if you do have copd, first of all it is probably mild, and second I would rather have copd than some of the awful lung diseases out there. Most of us copders have smoked in the past so please don't beat yourself up about it. Only about 1 in 4 get copd so you have been unlucky too.

Please don't google indiscriminately as you will scare yourself silly, which you have found out. If you are mild (and even moderate) then you can do a lot to hold it at bay for many years so it is by no means a death sentence. It is a chronic health condition which you will learn to manage in time. We all do, but I understand what a shock it is for you. x

Mo13 profile image
Mo13 in reply to

Thanks for that. It's interesting that similar responses from GPs have been received (maybe the NICE guideline tells them to be so nasty). Thanks for your support and advice - very much appreciated. Mx

velvet55 profile image
velvet55

Hi Mo

Firstly what is the GP's receptionist doing telling you about your x ray.

It is supposed to be confidential between you and your GP.

Secondly..smoking is one of the major factors of COPD but it can be caused by other things, without seeing you and talking about your symptoms and seeing the results of a spirometer test your GP is making a big assumption.

Thirdly, whatever it turns out to be there will be medication to help you.

Fourthly... Don't Google it you will scare yourself.

There is lots of information and leaflets etc available from the British lung foundation, even nurses to talk to.

And now the good news....you have found this site.

You will get lots of support and help from the members who are all dealing with various lung conditions, and a few laughs.

Your GP sounds like mine...useless !! But when you do get to see them, don't be fobbed off, keep your bum on the seat until they have answered your questions satisfactory.

Good luck

Velvet xx

Mo13 profile image
Mo13 in reply to velvet55

Oh thank you, that made me laugh. Yeh, I thought the receptionist was taking a big leap. Will do just that with GP - used to like this one, was the best in the practice, but clearly they have an ethos which involves being unhelpful and critical. Must ask to see their mission statement!!!!

Thanks for the support, makes me feel that I am not the only leper in the world!! Mx

velvet55 profile image
velvet55

Hi Mo

If you must Google read the NHS site.

Also Google NICE guidelines for the treatment of COPD, and post them inside a Christmas card from you, to your GP.

Let's hope he takes the hint !!

Velvet xx

Mo13 profile image
Mo13 in reply to velvet55

That's brilliant. Thank you. Maybe we should all do that and prompt a change of attitude. Mx

servewithmintsauce profile image
servewithmintsauce in reply to Mo13

That has made me smile!

Do not bother with the net to look up copd ask someone on this site what to look foword to as it is a slow thing and it just creeps up on you very slow just try and do exercise as much as you can and eat more sensible

Ergendl profile image
Ergendl

Hi, Mo. I get a sore left chest which sometimes radiates to my left shoulder. My dismissive GP told me it was intercostal muscle pain. When I woke up with it in the middle of the night last week, I went to see an osteopath who was able to ease the pain. He said a lot of it was caused by my diaphragm pulling at my rigid rib cage when I sing, and other intercostal muscles having to over-work to compensate - so the GP was right. I need to take two puffs of Ventolin before I start any major activity where I'm going to breathe deeply.

Mo13 profile image
Mo13 in reply to Ergendl

Thanks for that. Hopefully this pain will ease when I get some treatment. Driving me mad!

Dragonmum profile image
Dragonmum

Find another doctor - quick!

Offcut profile image
Offcut

Different doctors do not read the same hymn sheets, that is certain. I was diagnosed with Asthma in the 70's heart conditions in the 90's and treated well for both with rescue meds at home if needed for the lungs.

Moved house/area in 2002 and no more rescue meds and all my breathing problems blamed on heart conditions! But did still get salbutamol and seretide with pnuemonia or pleurisy every 18 months or so. Respiratory failure in 2008, 32 days ICU and 5.5 months off work. Only had a spiro test in 2012 as I found I had worked with asbestos for many years, Confirmed RLD, PH, Brittle asthma and right side paralysed diaphragm . GP still insist most problems are heart? 3 admissions to hospital with lung infections and a long term of Ambulatory care this year GP confirmed I have crap lungs. Guess it is progress?

Be Well

Mo13 profile image
Mo13 in reply to Offcut

Awful. Do think there is a little bit of GPs not wanting to lose face when they have made a diagnosis. And they don't LISTEN!!!!!

Offcut profile image
Offcut in reply to Mo13

It shows they are human and do not get it right always.

Wisper profile image
Wisper in reply to Offcut

If it was a one off Offcut, I could forgive but,it's not. Across the surgery rudeness and dismissive. They even jabbed my flu inoculation through a mole on my arm. I rarely went to the Dr's before this so it's not like I contact for no good reason. And the more I read here the more apparent it is becoming - Not only do these health professionals think people are deserving of copd they are voicing it and scaring people off when they most need the support. Sorry.

When I was first diagnosed with COPD I was told it was damage to the lungs through smoking. And one consultant said to me the damage has been done so why bother stopping smoking. I have come across some really nasty doctors but every medical practice should have a doctor who knows about COPD I always saw the doctor who knows about COPD and doesn't judge you one doc told me I would be on oxygen by the time I was 60 if I didn't stop I am 57 I stopped last year after a consultant had me in tears when I had to go in to hospital and one of the junior doc couldn't believe the way he spoke to me.

Mo13 profile image
Mo13 in reply to

Unbelievable that this behaviour is considered acceptable.

Mo13 profile image
Mo13

Hi All

Have been reading a lot of posts since joining. There seems to be some debate about diagnosis via chest xray (this was my experience - xray showed 'background changes of emphysema'). However am I right in thinking that xray only shows when disease is severe? Some posts from a few years back would suggest this. I don't have spirometry test until 5 January (diagnosis was 7 December) and am getting a little agitated. Advice welcome!

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