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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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  • jenny105
    jenny105

    Posted

    thank you i have found your site very helpful ..
  • Poemsgalore
    Poemsgalore

    Posted

    I too have visited your website. It is excellent. I have made it a favourite in my browser so I can visit it again.

    Thank you for going to so much trouble.

  • angela26883
    angela26883

    Posted

    Thank you, your website is really informative, it's great to have all the information in one place!
  • eileen39770
    eileen39770

    Posted

    Hi I'm new to the forum I am intrested in knowing anyone with bronciectasis I am 62 have had it since I was young I just wondered how you cope I have never met anyone or spoke to anyone with it thanks eileen
    • stellaclark
      stellaclark eileen39770

      Posted

      Hi Eileen, I sometimes feel I am the only one with bronchiectasis, especially because I have never talked to anyone with it. I am 69 and as a result of broncho-pneumonia at aged 2 I have suffered with a bad chest since then. I officially got a diagnosis of bronchiectasis 33 years ago. I have done posteral drainage each day since then.                    Some years back I started to take Gentamycin through a nebulizer, this I now do each day.

      Last year I was also diagnosed with chronic asthma, this has been hard to deal with. I take ventalin and respontin each day through a nebulizer. 

      I am very organised with my daily routine, this keeps me well, along with a good diet and lots of fresh air.

      Would love to hear how you cope.

    • eileen39770
      eileen39770 stellaclark

      Posted

      Hi stella  it seems your coping ok doing all the right things I cope pretty wellI do drain morning and night  am on all the usual meds but take antibiotics prophalactic  have been for about 14 years now  secondry antibotic  when needed   have got  pernicous anemia   too along with other problems   but it's the tiredness  thats hard to cope with   I hope your ok chin up  stay well xxx
  • Operalyn
    Operalyn

    Posted

    Thank you for the guide. I congratulate you on the profession appearance and layout and although it contains much of the information I have obtained from the Brompton and the wonderful nurse practitioner at my GPs you can never have enough info and contact with other people with the condition. I had quite forgotten about drinking a lot - luckily I get thirsty because I have allergic rhinitis too and it means I often sleep with my mouth open - which leads to a dry mouth.

    You don't meet many people with bronchiectasis I quite agree Eileen. I am 65 - nearly 66 - and have had mine since I was 13 months old.

    • eileen39770
      eileen39770 Operalyn

      Posted

      Hi  operalyn   im 62  63 this year  ive had  bronch  since I was very young too   I dont know if you've heard of PINKS DISEASE   mercury  poisoning  it was in the teething powders and  as far as I know  national dried milk  I had pinks when I was I  all my illnesses  seem to stem from that  stay well xx
  • donna57830
    donna57830

    Posted

    Thank you Rob, the site is really informative.
  • melanie30119
    melanie30119

    Posted

    I totally agree with the above ,very professional and informative I have this disease and a patent ductus arterioscolosis ,I am 49 and had 4 children and never have these problems been picked up till I had a chest infection in October that resulted in a ct scan and then things have just gone from bad to worse .so thank you for all the information
  • robert157
    robert157

    Posted

    Thank you all for praise about my website.....I am adding new updates to the site next month....such as pages about ....Coping withFatigue.....How to stay out of Hospital.......What is Self Management - and self management plan leaflet that can be downloaded.....New Physiotherapy pages....Knowing your Numbers..........and a few updates to existing pages.

    I am also working on a list of all hospital bronchiectasis services in Scotland followed by UK lists......this takes some time. Hopefully a big help to all patients looking for the best care centres in the UK.

    It is so important to know about and understand this debilitating condition ........self management is the key!

    Kind regards. Rob

  • dancing_queen
    dancing_queen

    Posted

    Well done, excellent site.

    I have found that Manuka Honey with a UMF of 10+ extremely effective in helping to prevent chest infections. I take one teaspoon daily but if I start to experience any early symptoms of an infection I increase the Honey to one teaspoon in the morning and one in the evening. Not 100% guaranteed but I have only had one infection in two years since I started taking the Honey and was experiencing three/six very bad infections a year prior to this.

    • lesley05714
      lesley05714 dancing_queen

      Posted

      Hi dancing queen...off to the honey pot! straight away...thanks for the tip...
  • Operalyn
    Operalyn

    Posted

    Will definitely consider Manuka Honey for future reference. The fewer infections we all get the better we will be.

    robert - you are working so hard with the website. It is such a good thing that you are doing.

  • stellaclark
    stellaclark robert157

    Posted

    Robert, I am so pleased that you decided to construct this website. Is good to know that there are people out there who understand what it is like to live with bronchiectasis.  I am 69 and got broncho-pneumonia at 2. I was always chesty but got a diagnosis of bronchiectasis when I was 33.

    I have felt alone all these years with regards to my health, but now I will visit the website and feel that there are people out there like me. Thank you, Stella       

     

    • robert157
      robert157 stellaclark

      Posted

      Thanks Stella.....I know exactly how you feel your condition is so similar to my own. I too was diagnosed at 33 years of age .....I am 67.....at that time you were left on your own...even my GP had never heard of bronchiectasis, there was very little or no information for patients at that time......hopefully my website will provide patient friendly information and support...especially helping us all to share ideas of patient self management and understanding this debilitating disease........look after yourself....Robert
    • Operalyn
      Operalyn robert157

      Posted

      Just to reiterate really that this forum is wonderful because so few people know about bronchiectasis these days - although I was shocked that a GP didn't.  People always think its like asthma..  Never mind.  We are still here battling on.  That's the thing to cling to on bad days.
    • lesley05714
      lesley05714 Operalyn

      Posted

      Ha, Ha, Ha! my doctor thought the productive coughing was acid reflux because the xray was clear; and had me on opoprozone for 9 months and told me I had to take them for life!! until I had a bad lung bleed, then the locum sorted it!

      Well what do you know? CT scan; Bronchiectasis all the time.

      (No more indigestion tablets, but they did cause a lot of trouble as they gave me acid reflux when I stopped them. It has taken three months to be finally free of the problem).

      Kind regards,

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