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Question to help a friend.

freefaller profile image
21 Replies

Hello everyone with COPD

Had a message from a friend living in Gosport today saying her COPD was playing up - they have told her she has the lungs of a 90 year old. She only has a ventolin inhaler - I told her she could up the dose of that if necessary but she does not have a preventative inhaler. Apparently they tried a dry powder preventative inhaler and it made her feel sick. I imagine it was the orange disk fluticasone inhaler. However, they never tried her on anything else - surely they could have tried another preventative inhaler for her?

Most of the time she does well and walks and has joined a singing group - told her about the BLF help line and to get in touch but she is one of those people who thinks her GP is the only person who knows anything and he is always right - you know? I hope there is something else she can use as a preventative out there. Is there anyone here who lives in the Gosport area and goes to a Breathe Easy Group there? If so can you let me have the details and I will pass them on. Would loo it up but about to go out shopping and it is widdling down ugh.

Thanks

Sian

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freefaller
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21 Replies

Hi this doesn't sound right as there are many different types of preventer treatments and surely one would work for her. Many copders including myself use Symbicort which isan inhaler based on the same principle as blue ventolin. This is a preventer and opens the airways so it is easier to breathe.

I am sure others will be in shortly with more options so you can advise your friend what to ask her doctor for. x

Ps she needs to change her GP! Surely there are others she can see at the practise?

The only time an age was put on my lungs was when i had a spirometry test done at the docs surgery so if thats all she has had done she needs referring to a consultant to have a full lung function test ............

There are some good inhalers im on symbicort which is brilliant and eklira

She needs to go back x

in reply to

Are you in the UK Mandy? Diagnosis is usually made here via a spirometry test only unless there are other symptoms or health issues, then she might be referred for a full lung function test.

I was diagnosed with mild copd through a spirometry test with a lung age of 89 (I was 56 then) and I have never seen a consultant even though I have asked several times.

The answer? We only refer when the surgery can no longer manage your care! Maybe other practices are different though? x

in reply to

yeah im in south wales

i had a spirometry test and i asked the nurse how it was and she said fine and i heard no more then after almost a whole year on antibiotics which clearly were not making any difference i was rushed into hospital when my sats hit 76

The consultant i saw told me i was about 2 years too late and should have been seeing someone much sooner and 4 weeks later was told i was to be assessed for a transplant

Bev i would urge everyone who has not seen a consultant to request one....xrays dont show much and if i had got to her sooner i may not be in the situation i am....my doctor was the one who ran the asthma clinic so he should have been the best person for me to see yet he never even checked my sats when i use to see him and i hold them responsible for me being so ill

freefaller profile image
freefaller in reply to

WOW! Where in South Wales do you live Mandy? I am in Pembrokeshire.

Sian

xxx

in reply to freefaller

Vale of glamorgan hun our postman just won 2 and a half million on the lottery .......your in a lovely place x

freefaller profile image
freefaller in reply to

Well congratulations to your Postie! Where in the Vale? I like Pembrokeshire but it is a long way away from everywhere but once you get back you realise why you like it so much here.

Sian

x

Toci profile image
Toci in reply to

cal - I was tested via spirometry and an xray but also then had blood tests (to check oxygen/CO2 levels and to check for Alpha1), six-minute walk test and an ECG.

Hi there,

You are such a caring person to be trying to get help for your friend. I'm sorry but I simply don't understand why so many people struggle on rather than getting specialised help. Your friend lives close to Southampton hospital, which is supposed to have an excellent thoracic centre. GPs are ok but they are not specialists. The G P needs the backup and support of the specialists in your friend's treatment as much as she does. ( though many of them are arrogant to think that they know it all.) I suggest that you look for the COPD specialist consultant at Southampton on the hospital website and try to get your friend to go to the GP armed with the name of the person she wishes to see. A tweak in the treatment can sometimes make all the difference to quality of life. Good luck, do let us know how she goes on.xx

Sokrackers profile image
Sokrackers

Hi Sian

I was diagnosed stage 3 COPD a year ago and was given symbicort inhaler which has improved my condition vastly.

Before diagnosis I was given the blue and brown inhaler which had little or no effect on my condition. If I remember rightly my consultant said 'it wouldn't have been strong enough'.

There are many inhalers available maybe your friend could check with the respiratory nurse at the GP practice to see if her current inhaler is effective for her.

Personally, I have good days and bad days but consecutive bad days, in my opinion need further investigation.

Hope this helps

SK

jabber profile image
jabber

There is a Gosport Breathe Easy group. I don't know how to do a link on this machine, so I won't attempt it, but if you google 'Breathe Easy Gosport', you'll get a report from the Portsmouth News about it.

Also, I go to Southampton Hospital's Respiratory Unit for my Bipap to treat CO2 retention. Everyone there is friendly and professional and I've nothing but praise for all of them.

I agree with everyone else. Your friend should certainly be referred to a Respiratory consultant who will have more knowledge of COPD, and in the meantime there are many alternative preventer inhalers - I'm on Seretide 500 which is fine for me, although I know some don't like it. I also take Montelukast tablets which were prescribed by my consultant at Dorchester.

Good luck with persuading your friend to argue with her GP! Jan :-)

aberdeenman profile image
aberdeenman

the first lung test I had was about 6 years ago at chemist. I was 49 and the told me my lungs were 108.

tam

freefaller profile image
freefaller in reply to aberdeenman

Hey Tam, did your lungs get a telegram from Her Maj? Lol sorry that is my weird sense of humour if you can call it that!

Sian

x

aberdeenman profile image
aberdeenman in reply to freefaller

Lol no god knows what age they are now should have had a few lol

freefaller profile image
freefaller in reply to aberdeenman

ha ha.

Kathygwanny profile image
Kathygwanny

Hi, Maybe this link will help.

Kathy x

blf.org.uk/BreatheEasy/Deta...

freefaller profile image
freefaller in reply to Kathygwanny

Thanks.

Looks like your friend is not getting the care she deserves. Advise her to go back to her GP or change doctors altogether. Most COPD sufferers take preventive inhalers. I have Symbicort 200 taken twice a day & find it very beneficial as well as 1 dose daily of Spiriva. Good luck & keep well x

freefaller profile image
freefaller

Thanks everyone. You are just wonderful.

Love and hugs

Sian

xxx

ERINDOORS profile image
ERINDOORS

Hi, There is a very excellent breathe easy group in Portsmouth ! chaired by Eric Compton , if your friend goes on the BLF site it will come up with a contact address.

THEY CAN OFFER TREMENDOUS HELP !

freefaller profile image
freefaller

Thanks.

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