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Fellow Bronchiectasis warriors !!!!

Posted , 5 users are following.

IdiopathicBX
IdiopathicBX

Hi fellow Bronchiectasis warriors

I have just joined the group so please bear with me if I make any mistakes ( I ain't very good with technology ) ha.

I'm 56 years old and was born with bronchiectasis ( cause unknown ) , after battling with this illness all of my life I feel my lungs have really deteriorated and my "quality of life" has went down hill. I'm finding it really difficult to keep positive at the moment, it just feeels like a never ending battle trying to keep on top of the condition EVERY day of your life.

In the winter months I feel like a recluse as I'm always ill with severe exacerbations. The only thing that keeps me going is my little granddaughter and hoping that in a few months the chest infections won't be so bad  when/if  our weather improves .

Was wondering if there are others in the group who were also born with bronchiectasis or diagnosed as a child and have battled with it all or most of their lives. Would be so nice to hear how they are feeling and what they do to stay positive. I do pretty well considering but have my low times like now, ha, sorry ! 🙈

Would really love to meet someone with this condition for a coffee to exchange information, someone who really understands how it feels living with this illness. 

I live in the Lanarkshire/ Glasgow area in Scotland ?.

Btw....im not always so doom and gloom lol 🙈

And off course would love to chat with other "warriors" in the group...??

Best wishes to all xx

0 likes, 9 replies

9 Replies

  • ron_08501
    ron_08501 IdiopathicBX

    Posted

    Welcome aboard ??? (You didn't leave a name)

    well you've has a tough journey. 

    I was diagnosed about ten years ago but think

    i've probably had it since I was in my teens.

    I try to walk a lot. More so now. Recently been in hospital. 

    Walking does seem to be the way to go or exercises if walking is too

    difficult.

    i think we all hope that stem cell treatment will be the 

    cavalry for most of us 😊

    Keep walking if you can and stay away from smothers.

    breathing exercises to help you cough up the grunge 

    will also help. I assume you have been shown them by a physio.

    Ron.

     

    • IdiopathicBX
      IdiopathicBX ron_08501

      Posted

      Thank you Ron....

      It's Ann here ?, yeah, been doing the physio etc, it's nearly a shift for us sufferers by the time physio's done then the nebulizer and medicines have been taken isn't it 😂, don't know about you but sometimes I get so fed up having to take so many tablets 💊 yuk- but needs must I suppose.

      It's uplifting now the mornings are getting lighter and brighter and know I can get out a bit more. Nothing better than a nice stroll on a lovely day ?.

      I didn't realise I had people reply as no notification, sorry for the delay getting back to you....

      Hope you are feeling (as well as expected) Ron xx

  • aitarg35939
    aitarg35939 IdiopathicBX

    Posted

    Oh my, but I think you're incredible! I've only been diagnosed for 1 1/2 years, probably had it for 2 years before that, in my 60s. Was sick sick sick from Aug '16 thru May '17 and I never thought I'd feel better again. How you've managed for 56 years is a marvel to me.

    This is the place to air it all. You never need to apologize here for how you feel physically and emotionally. You don't even have to apologize if we have a round of Whose Gunk is the Funniest.

    If I were thousands of miles closer I'd meet you for coffee. I'm in Austin Texas so that's a very expensive cup to drink. You can also check with the nearest Lung Association office for in-person support groups. Everything you post on here can be read by everyone in the world, so before posting personal info, consider doing it via the Personal Messaging (PM) function. To do that, click on the envelope icon by someone's name. That takes you to a space to send a PM. If you PM back & forth you'll hit the one feature I dislike in the program: you have to scroll through all previous PMs with that person to find the newest one. I'm in 2 other forums here & one patient & I trade about 15 PMs/year so LOTS of scrolling.

    I know you feel quite low right now. I hope the sun shines at keast a few minutes in your patch of Scotland, today & tomorrow and lifts your spirits. You are not alone.

    • aitarg35939
      aitarg35939

      Posted

      That would be "Whose Gunk is the Funkiest ." Thank you Auto-Mistake!

    • IdiopathicBX
      IdiopathicBX aitarg35939

      Posted

      Ha....aw thank you Aitarg35939, that is brilliant who's gunk is the funniest 😀

      I've grew up embarrassed about having to cough up gunk and always tried to hide it so it is refreshing to hear others with the same problem.

      Oh that would be fabulous to have a coffee in Texas with you 😀.

      Thank you so much xx

  • sue00942
    sue00942 IdiopathicBX

    Posted

    Hi tre. Welcome to the forum. I had the diagnosis 6 years ago, and its bad enough for me but cant imagine how it must have been having this all your life.

    ?I'm always looking for research for us bx patients. Found a post this week on bronchiectasis news, about a stem cell transplant that has some promising results.

    You can register on the website and get news of therapies every week.

    ?Just log onto bronchiectasis news. There is also a posting about a medicine which reduces the inflammation which occurs when the lungs become infected.

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