My Website

For a long time I have considered the idea of creating a website about Bronchiectasis, especially with information about patient self management.

After many years in planning here it is...... bronchiectasishelp.org.uk.

I just had to share my thoughts and experiences with others who either care for or suffer from this disease........I am one of those patients who feel the need to share my life long experience of coping and managing bronchiectasis. I hope you find it helpful.......Robert

13 Replies

oldestnewest
  • Very interesting whether or not you have bronchiectasis. Brilliant job! :-) Alison

  • What an excellent job you have done there Robert. I am sure it will be of additional help to those who suffer from it. Well done and thanks for sharing :)

  • Thrilled, Robert. Nice to met you. I am pretty ancient. I have bronchiectasis and asthma but want to make the most of what is left of my life. I am very interested in joining your website.

    I am a retired SRN (RGN) and could listen to anyone who has problems. All the best from Anne Ward (annieseed)

  • Hi RHunter, that is a great website, well done, what web editing programme did you use? I like the turning pages of the book effect :)

    It looks great.

    Thanks for sharing here.

  • Have just read your blog and think it is excellent; in fact I have just signposted delilah from Questions to here.

    I also have bronchiectasis, along with COPD and asthma - think it was a case of buy two and get a third free.

    I suggest that the BLF does something useful, like sticky Robert's blog for all to see.

  • I have contacted BLF to ask for some publicity to promote my website ......hopefully they can help out......Bronchiectasis patients need the facts about day to day management in a very informal patient friendly manner......the key is knowledge and understanding to enable more patient control and self management.

    Again many thanks for all the support.....I am so pleased at the universal positive response to my website...which has inspired me to start phase 2 with more new pages and helpful topics.........thank you all.......Robert

  • Robert thank you for sharing your lifelong experience, it will be very helpful to many people. I too have lifelong bronchiectasis and asthma, half left lung removed some 40yrs ago.

    You did not mention the Lung Flute which I now can not live without, for me it has dramatically reduced my need for antibiotics and can clear some infections if used properly, daily, I can now be cough free for most of my day for the first time in 64 years.

    Thank goodness you have written and shared your knowledge... keep going..

    su

  • I have bronchiectasis and COPD I wish I had access to a little booklet like that in the beginning. Very informative.

    Thankyou

  • Good site, well done. I have bronchiectasis and find that it is not so well documented as COPD.

  • Hi Rhunter - Congratulations on a very comprehensive guide to living with and managing non cf bronchiectasis - well done. Really like the style and general information.

    Under the heading 'Best Websites ... I wondered if you had ever come across Bronchiectasis R Us. The site was started some time ago by a young woman from the UK who we all love to bits. However the site has many international members and is full of knowledgeable non cf bronchiectatics. May be worth you having a look to see if you wish to include it.

    I think it takes someone very special to take an idea and run with it. You are a proper 'doer' Rhunter - brilliant.

    Love cx

  • Many thanks to you all for kind words and comments. The reason I left out BRUS in my recommended websites is I only wanted to mention official medical sites with the basic clinical information about bronchiectasis. I have future plans for a new page about bronchiectasis forums such as BRUS and BLF.....being self critical about my site I do feel there is a need to add a more human level to the contents of my site so that will be planned for the next review in six months time.......my site content is about being patient generated so please keep forwarding suggestions and ideas for changes and additions. A lot of the present content was derived from discussions with specialist health professionals and meetings with many other patients.

    Once again a very big thanks for all your encouragement and positive comments......Robert

  • your websight was very informative and useful rhunter as i too have bronchiectasis it makes you feel really ill some days i do get so fed up with coughing all the time but found your info so useful many thanks from marguarita

  • Hi Rhunter I know this 7 months late but your website has really helpedme. I get told off by my GP (in a nice way) that I leav e it too long before taking ABs. Well I thought my yellowy green sputum wsas normal, that dark green was the bad one. I must had far more lung infs than I thought over the last few years. Will be making appt with GP to have a general discussion. In a perfect world we should have more basic info when diagnosed. Thank you KJJ

You may also like...