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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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  • jazzy80
    jazzy80 robert157

    Posted

    I am so pleased pleased to have found your website... and found it to be very informative.
  • mary_ann67523
    mary_ann67523 robert157

    Posted

    Hi, Robert I am looking forward to viewing your website.  I am across the "big pond" in the States - Florida.  The lung doctor that I saw 3 weeks ago told me that the CT scan I had in April 2013 missed the bronchiectasis.  It wasn't until this year 2014 after my annual sinus infection,  the cough would not go away and 4 months later and several doctors (allergist, ENT, neurologist and finally a lung doctor), I am told I have bronchiectasis and that it was missed 16 months ago. I have been coughing since end of March and I am still coughing.  It is very depressing. I don't know to trust this doctor because when I talked to his nurse this week she asked did the doctor tell me about bronchiectasis and I told her he showed me diagram and that was basically it. She told me to google it. I don't what I am feeling is normal or which doctor to inquire to.  I am fatigued, some days extremely. There has been no mention of pysiotherapy. I was given a flutter.  I don't know that I am coughing up any phlegm.  All the informative sites I have found have been from the UK but I doubt my insurance company will pay for me to come to the UK but right now I ready to :-) 
    • robert157
      robert157 mary_ann67523

      Posted

      Hello Mary Ann - Your story is very typical of newly diagnosed bronchiectasis patients - you are sent home after the diagnosis with a brief explanation and lots of confused messages of what to do......this is exactly why I produced my website.

      I have had 40 years of coping and managing this debilitating disease and built up a vast knowledge of information from health professionals and my own experience of coping and self managing the effects of this disease.

      There is no cure for bronchiectasis.......however there are many successful treatments and procedures to eliminate or control the symptoms....self management is the key factor and that is what my website is for....to inform and encourage patients to take control of managing this disease. Here in Scotland encouraging patients to take up ''Self Management'' is a key priority with health authorities which is why I was sponsored by the Health and Social Alliance Scotland to produce this website.

      What will be important to you is to find a hospital with a comprehensive respiratory department which has a specialist bronchiectasis service. My own hospital here in Edinburgh is fanatastic - specialist bronchiectasis nurses, doctors and physiotherapists just a phone call away - I couldn't ask for any more.

      Have a good look through the website www.bronchiectasishelp.org.uk and take control....this disease can be successfully managed to give all patients a beter future and quality of life......take care..Robert - Website Creator and Director.

    • mary_ann67523
      mary_ann67523

      Posted

      Went to your site and I really liked it! Thanks!
    • mary_ann67523
      mary_ann67523 robert157

      Posted

      Thanks Robert!  I am going for a second opinion on Monday.  I am going to Shands which is a teaching/research hospital associated with one of our Universities.  The doctor there has already ordered two tests and I only made the appointment today.  I think this will help with the mental frustration/worries.

       

  • anne76335
    anne76335 robert157

    Posted

    thank you so much robert. diagnosed yesterday, aged 67. a total shock!! been coughing and unwell for ten months. seen three docs for chest infections, then the one i see now treated me for post nasal drip, then silent reflux. got a non urgent referral to respiratory specialist cause a chest x ray i had in january came back clear. so now coming to terms with it. knew i was not well and once went to a@e they sent me away with a flea in my ear as a time waster!! also have type 2 diabetes. the diabetic forum has hugely helped and i know yours will help all us with this nasty condition. i plan to keep on swimming and walking (both very slowly). all best wishes to you and the rest of our gang>
  • Ali1970
    Ali1970 robert157

    Posted

    Great website Robert. Thank you. I am 44 and have Kartagener's, and was diagnosed with bronchiectasis in my 20s. I have led a full life thus far, I have two small children and demanding job. Your point about having a positive attitude is so important, and lots of exercise.

  • virginia21526
    virginia21526 robert157

    Posted

    Hi l have just joined the discussion group l have been diagnosed with Bronchiectasis plus asthma about six months ago l seem to manage this but l have such a barking cough its quiet horrid comes does anyone else have these symptons with the cough l mean.
    • dancing_queen
      dancing_queen virginia21526

      Posted

      Hi Virginia, I certainly do know what the cough is like. It can be quite painful too and spontaneous. I'm suffering with one at the moment and its really wearing me out. Try not to swallow any phlem back down that may come up when coughing. Not always easy to do if you are out, I know. Eating always makes it worse too. Just try to rest when you can and build up your strength.
    • virginia21526
      virginia21526 dancing_queen

      Posted

      Thank you for your prompt reply yes its nice to know that someone else has this horrid cough, and l am not alone one again thanks
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