doctors so dont understand ( Im new)

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ive been suffering 6 months with colnstant infections. and postural drainage  is really hard when it just feels stuck solid in my lungs. awaiting for my specialist appointment but still waiting. ive had bronchiestis since i was 16. 

do any of u guys out there have trouble with ur gps? is there any out there to help loosen up  mucus? 

gem

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7 Replies

  • Posted

    Gp are rubbish when it comes to bronchectasis even some consultant . i got a referal to the royal brompton london and have been put on hypersonic saline to move mucus
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  • Posted

    Hi Gemma. It's horrible when you get stuck in a phase like this. I have had bronchiectasis for 66 years and I have had some tricky times.

    Is there more than one doctor at your practice? There might be one who is good with lung troubles. Drinking lots and of water can help to thin out the mucus. I find using a blue Ventolin puffer helps to open the tubes which makes postural drainage easier.

    You need specialist advice I think. I am really lucky because we have a nurse attached to the doctor's team who specialises in the practical side of COPD and bronchiectasis and I have a once a year meeting with her. Anything like that at your GP? The receptionist would know.

    I hope you feel a bit better soon. keep doing the postural drainage and breathing exercises.

    All the best.

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  • Posted

    If it is someone in your GP's practice that diagnosed bronchiectasis then maybe there is someone there who knows enough to deal with the immediate issue at hand. Worth going back and discussing with your GP whether you should be prescribed a mucolytic to at least try. In the UK that would mean carbocysteine with a normal dose being 600mg once a day. It's a fairly inocuous drug as far as I can tell and does help a lot of lung sufferers break up the sputum so it can be more easily coughed up. Still needs a doctor or pharmacist to advise though.

    Nebulised saline would work even better but I think you would need a pulmonologist department at a hospital to introduce you to that

    Drink lots of water as Operalyn says. I also find it helpful to time my physio exercises to cough up the sputum to be an hour or so after eating - I find that the action of eating loosens up my gunk

    I hope your appointment comes up soon. Personally I would go private for an initial consultation, but not everyone can afford that and some don't agree with private healthcare out of principle. Maybe a pulmonologist would do a reduced scope advice/discussion only service for you (no expensive analytic tests like CT scans and full bloods). The NHS is brilliant, but too much of it is dependent on the postcode lottery to get seen early and to get seen by a high quality pulmonologist*. Unfortunately even some private consultants are not that good compared to the real experts in regional hospital lung defence units. Post where you live and maybe others can recommend. Royal Brompton followed by Papworth Cambridgeshire are the leading lights by all accounts.

    *I saw an interview with some institution interested in lung disease only last week on Sky News that bemoned how little money is spent on reserach and data gathering for lung diseases like bonciectasis, COPD and asthma compared with heart diseases and bemoaned the postcode lottery and absence of coordinated approaches to treatments in the UK.

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  • Posted

    thank guys, referring me to my local hospital but ive been to brompton before and they were really good but gp refuses me to  go back to london. could i  call up brompton myself as ive seen them before
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    • Posted

      No you have to get referal from doctor can u see another g. P or complain about tge one you have seen
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  • Posted

    If you are a registered patient at the Brompton it might be worth a go. I am a Brompton patient. They're great.
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