Just saying hi

Wow, I'm amazed to find this site! How nice to meet you all.

I was diagnosed with Kartageners about 25 years ago and used to have physio at the hospital, as well as seeing the consultant every year.

Both signed me off a number of years ago. The GP gives me antibiotics if I need them, but I do wonder if I should ask for another referral to a consultant. I wonder if someone should be monitoring, if not managing, my condition?

I would be interested to know what you all think. I'm so pleased to find a bunch of people who might understand! I've never met anyone else with the same condition!

Helen

4 Replies

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  • Hi Helen

    I would recommend that you see a respiratory consultant and have a review with a physiotherapist at least once a year. If you email me directly I can recommend some for you.

    Hope you are keeping well

    Fiona

    Email: chair@pcdsupport.org.uk

  • I absolutely think you should be monitored at least once a year by someone who has some experience with PCD or at least CF. How else are you going to keep an eye on any progression of damage or deterioration? It's all too easy to gradually lose lung function and not be aware of it until you're down to almost nothing, as we get used to being a little more and a little more short of breath. By the time I actually paid any real attention to my lungs other than antibiotics when sick and inhalers when short of breath, I had less than 40% function left. Once the damage is done, it's DONE; you don't get "do-overs" with lung disease. All you can do is try to prevent future damage. And how are you going to know if you're doing that, if nobody is keeping an eye on your condition?

  • I can only reiterate what Fiona has suggested. She will be able to guide you in the right direction, with the nearest of the specialist centres to you.

    Keep well.

  • Thanks for your responses. I'm going to see if I can get in touch with my GP to get a referral and will let you know how I get on.

    Helen