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My New Bronchiectasis Website

Posted , 20 users are following.

robert157
robert157

As a life long sufferer of Bronchiectasis (I am now 66) I had this burning desire to construct a website about ''Coping with and self management of Bronchiectasis - ''A Patient's Perspective''.

I have spent a lot of time discussing with specialist health professionals and other patients as to content of such a site.....Best to let you all have a look.... www.bronchiectasishelp.org.uk

I feel patients need day to day simple, practical and friendly advice on self management of this disease.....hope you find it interesting..............Rob

7 likes, 43 replies

43 Replies

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  • robert157
    robert157

    Posted

    What a star you are Rob! You have obviously spent many hours of your time to construct the contents of the website which I find so helpful.

    You deserve a medal. 

     

  • eileen39770
    eileen39770 robert157

    Posted

    You did a good job robert  its been so helpful  seeing how others cope   I had never spoke to anyone  with bronch   its been very informative  thank you 
    • lesley05714
      lesley05714 eileen39770

      Posted

      Hi Eileen, there is a useful site for meeting other Bronchiectasis sufferers called bronchiectasis r us ... they have some good forums to answer questions and share experiences. Kind regards, Lesley
    • eileen39770
      eileen39770 lesley05714

      Posted

      Hi lesley  have joined a couple of sites   which are brilliant   I have had bronch since I was very young  am now 62   but thank you  be well xx
  • paul54228
    paul54228 robert157

    Posted

    Hello im new to this site want i would like to know is how do people manage to work with this condition i have had cronic bronchiectasis sicne birth and im now 40 when i left school it didnt really bother me but when i got older working got so hard i went from 48 hours aweek down and down and now i havent worked for a long time ,once i start doing any thing i get so out of breath i would lv to speak with anyone who has something to say i also found your site really good paul
    • eileen39770
      eileen39770 paul54228

      Posted

      Hello paul  I had to give up work quite a number of years ago I used to take so much time off   my two sons were a great help to me  when I was very bad  doing physio  helping cook  get in and out of the bath    coping a lot better for the last 12 15 years  lots of medication  has really helped   but I have learnt  I have to rest more  and pace myself more    on my shopping days I rest up the day before  stress makes bronch worse   lookk after yourself xxx
    • Operalyn
      Operalyn paul54228

      Posted

      Hi Paul - I have had bronchiectasis since I was a baby too.  I am very lucky - I don't get as breathless as you obviously do but I do get very tired.  I have managed to work all my life (I am retiring in summer) but I have had sit-down jobs which didn't need too much energy.  And I had a lot of time off in my 30s and 40s which meant I was always being called into speak to the management about my time-keeping, even though they knew about my chest complaint. 

      Eileen is so right!  You need to pace yourself with bronchiectasis.  Good rest, early nights, lots of fluids (my local COPD nurse told me about that only the other day - you really need to keep hydrated, it thins out the sputum apparently.  Boring but true!  I didn't do much of that in my naughty 20s and boy did my chest suffer.

      Anyway, I hope you are getting enough help from your GP and that you are with a lung specialist at a hospital.  That is the most important thing in my opinion.

      Take care of yourself. 

    • robert157
      robert157 Operalyn

      Posted

      Hello all........fatigue is a major problem....and learning how to cope and manage tiredness and malaise is not easy.......in fact I have just launched twelve new pages on my website  www.bronchiectasishelp.org.uk  including a section on managing fatigue with a contribution from the Freeman Hospital Bronchiectasis Service, Newcastle........they have conducted research in to

      this debilitating symptom.....very interesting.......take care.....Robert

  • eileen39770
    eileen39770 robert157

    Posted

    Hi robert  the help sit you put up was very helpful  am going to pass it on to other suffers  if you don't mind  so many out there  looking for information on this disease  I have learnt so much   as I had never spoke to any other sufferers of bronch  thank you  untill I went on this site  and was passed on to other sufferers  so thanks again 
  • pomodoros
    pomodoros robert157

    Posted

    I too am a life long sufferer. I am now 55 and 'going strong'. I would love to follow your site as I live in South Africa and have only met one other person with bronchiectasis. I have never researched remedies, i just somehow battle along, trying to live as normal a life as possible among the healthy!! Janine
    • Operalyn
      Operalyn pomodoros

      Posted

      Me too Janine - I am running myself ragged at the moment looking after my poorly 89 year old Dad!  I have always taken no notice of having the complaint and kept going until one day my body says..."give up you need a rest" and I do.  Sometimes!

      I have actually overdone it very badly in the past and made myself ill because of it so it is not to be recommended but when you have had the complaint as long as I have, the only way to deal with it is to just get on with it.

      Lyn

    • pomodoros
      pomodoros Operalyn

      Posted

      You are so right Lyn  I have mastered the art of NOT getting stressed out knowing it lowers my immune system and leads to chest infection. I am careful to pace myself and keep myself "flat lined' emotionally - as I call it. Situations come, like my dear moms needs, and I do what I can and not more. I dare not.
  • Patient99
    Patient99 robert157

    Posted

    Hi Robert,

    Although not diagnosed with Bronchiectasis (I do have COPD though) I have found your website absolutely brilliant, and am especially pleased to learn of the 'know your numbers' pages.

    Keep up the good work, websites such as yours' are worth several GPs 'opinions'

  • liz164
    liz164 robert157

    Posted

    Can't turn the pages!
    • robert157
      robert157 liz164

      Posted

      Sorry about that Liz......try scrolling with cursor from top right of page as if turning page ..or.. Click on thumbnail icon on menu bar and click on desired page........some computer systems are not geared up for flip page websites......hope all this works......take care....Robert
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