IPF symtoms - help

I have was diagnosed with IPF last Oct have seen some specialists and undertaken various tests but am not on any medication and seem to have been put on hold. I have been referred to other specialist but haven't heard anything for two months which is a long time when you have this problem. I don't think I have the classic symptoms. As I am not breathless and still work full time. I do have a constant cough and an awful lot of thick mucus all the time. Is there anyone else like me out there......

5 Replies

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  • Hi David, nice to meet you.

    I'm not in the same boat as you as i am still looking for diagnosis but it is all a painfully slow process. Where have you been referred to as I think there are a few specialist centres for PF but they will probably have long waiting lists.

    Give BLF a call on Monday, they will be able to advise you on what you could/should expect for treatment for your condition. In the meantime I am sure someone with IPF will be along to discuss more with you.

    Take care. C

  • If it were me David I would chase them up either through my GP or telephone the specialists secretary to find out what the present situation is.

    Good luck

    cx

  • Hello David. I have IPF. I had a cough for 3 years before anything was done. My GP didn't think it was a problem, it was only when I saw Rheumatologist that she sent me for all the tests. I had the camera, ct scan and xrays within a couple of weeks of seeing her. I was put on steroids first and then cyclophosphamide for 7 treatments. It didn't work so I am now waiting and hoping that Azathioprine works. I think you need to chase the hospital up. You should have at least got an appointment through by now. Good luck

  • I have RLD and I am breathless. But one thing that has been consistent for me has been the same from the consultant and GP " I am sorry but you will have to live with it" I have a daily painful cough but am mainly dry. I worked until 2 years ago. I have not been given any other medication once I was diagnosed RLD but my planned Pace and Ablate was cancelled because of it.

    My personal and best advise carry on working enjoy life and know your limits (maybe push them a little)

    Be Well

  • Hi David, Ruth here from the British Lung Foundation. If you contact our helpline on 03000 030 555 (will not cost more than a local call), they'll be able to tell you if there is a pulmonary fibrosis support group or a Breathe Easy support group near where you live. This might be helpful if you would like to meet other people with IPF. They can also answer any other questions you have. We also have more information about IPF on our website at blf.org.uk/ipf. Please let me know how you get on.

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