fed up with coughing

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I was diagnosed with PF in August this year from a chest x-ray ! is this possible ? I'm 58 and it was a shock having been a health and fitness freak most of my life, luckily so far I'm not breathless, except if I try to ride up hill on my bike but my recovery is ok,  I'm sure this will change, but I can not stop the cough which is worse at present having just had a cold and chest infection. The cough is driving me nuts. My GP doesn't seem concerned I have asked for a consultant referral but that is not happening because apparently I'm not poorly enough to warrant this. Frustrated and annoyed I spoke to British Lung Foundation who told me its my right and NICE guide lines state this!!! where oh where do I go from here help advise muchly appreciated thank you

 

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  • Posted

    Hi leslie

    Sorry to hear of your problems.  This is a long shot but I had the same problem.  Bad Flu and endless coughing up mucus. I was told it was by an ENT consultant that  it was post nasal drip but it turned out to be gastric reflux and in now well controlled by Lansoprazole which is an over the counter anti acid medication (ask for any PPI).

    It is impossible to diagnose IPF from an Xray.  Even with an HRCT scan it is difficult.  A fairly sure sign is velcro crackles which you can hear with a stethascope and honeycomb cells which may be visible on an HRCT.

    Like you I am careful with my health and I had a chest xray which showed dark patches and this was also ignored by the GP.  3 years later I had another patchy chest Xray and I insisted on seeing a consultant.  1 year and many tests later I got my diagnosis of IPF.  I am not ill enough to qualify for NHS treatment in the UK but  I have been accepted on a trial of Nintedanib so finally I feel good, not coughing and hopefully I have several good years ahead.  I am 77.  Keep in touch.

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    • Posted

      Thank you for your input, I'm just annoyed I like to be in control and when I'm not I get frustrated, I definately have post nasal drip and although I don't get reflux I do have a hernia. I don't know where I go from here but, I want to be around to see my grandkids a bit longer. Having nursed for years I must admit I am not the best patient, espcially with the new standards that seem to have dropped. I will make a note of Nintedanib how did you manage to get it? surely if its helps we should all be offered it !  Thank you for your help keep in touch also

       

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  • Posted

    So sorry to read your post Lesley,sounds so much like my

    Husbands symptoms. Insist on a specialist referral,also go for the

    Flu and pneumonia jabs. These are free from your gp surgery,also ask for

    an inhaler as this has helped. Take care of yourself.

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  • Posted

    Hi Lesley, I am a carer for my husband who has IPF. He started with a cough like you and had an x-Ray. Our GP then sent him for a CT scan to confirm his initial findings. I think you should definitely request a CT scan which will show the progression of the PF and see if you are eligible for the new treatments that are available to slow this disease. Good luck. Don't be fobbed off you are entitled to these tests. Maxine. Xx

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    • Posted

      Thank you Maxine I'm not one to be fobbed off usually but this has knocked the stuffing out of me. I don't know what to do where to turn, I have a husband who buries his head in the sand, don't think he has even listened to me or my diagnosis, I'm angry upset I don't want to burden my children even though 2 of them are advanced, paramedics, they have there own life and worries. I feel so alone and abandoned. Thanks for your input

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  • Posted

    Hi Leslie

    I am on drugs trial of Nintedanib which is he only way to get it if your FVC is greater than 80%.  Mine is 105% because I happen to have lungs of above average size.  It is a scandal that it is not available to me on the NHS even though my gas transfer which is what matters, is well below the normal minimum.  The UK is the only country in Europe which does not make it available.  It is discriminatory because different health authorities use different formulae for calculating the FVC. It is discriminatory to Women because the formula which was developed for coal miners, is less favourable.  Had I been a smoker I would probably get it because this degrades the FVC too. I urge people to write to their MP to try to get the NICE guidelined reviewed on an urgent basis.  There is ample proof that Nintedanib is effective for people with an FVC above 80%.  it is expensive, around £25,000 per year, I understand.  Much more is spent on some cancer drugs even for people with a poor prognosis.

     

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