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Bronchiectasis

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I have Bronchiectasis and i am only 20 sad i cant except that i have it and i have to leave my job beacuse of it sad i just need someone to talk to who has the same problem as i have cos i dont know anyone who has Bronchiectasis

Thank you Jen x

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  • simon74257
    simon74257 Guest

    Posted

    Hi Jen, I just wanted to add something, I am 33 and recently got diagnosed with bronciectisis my self, Ihave been given this green accapella device (ask your GP or specialist for one) and I'm not lying, this paticular one really helps, I can send a picture of it if you like but I think it is just called accapella, probably a more expensive version than some they may offer you but try get that one, I was old blowing into this is like shaking the branches of a tree, and it's true. it vibrates and when you huff brings up whatever is stuck inside your lungs, which saves you having to do as much drainage, I find this a lot easier. Also as others have said do as much gym as possible, you may be entitled to PIP and ESA if you are unable to work which will be a big financial help. You can then always volunteer and still get your nvq untill you feel you can cope or manage better. Not much advise is provided by our G.P's etc but take it from me, it is something I would reccomend. Plenty of fluids and try not to worry, just enjoy your life. If your sputumn changes colour from clear to green get a sample in. That's all I know for now but hopefully this will get you back on your feet. Also the relvar inhalor has been quite handy for me so far.

    Sy.

  • natasha_1983
    natasha_1983 Guest

    Posted

    Hi there just looking for advice on Bronchiectasis, I am 32 years old and have been treated for mild asthma fir the last 10 year in the last three years got progressively worse and started a tablet each day and steriod inhaler in Feb 2015 I got really ill with a chest infection where I was so weak I struggled to walk can I add I was extremely fit running half marathons and doing excerise classes three times a week at 6 in morning before I done a days work,,I never properly recovered and spent 5 months of work as then I got silent pneumonia then whopping cough even when I got over that I have had another 4/5 chest infection this is all less than a year. I was admitted to hospital and was told I was hyperventilating and took most of my medication off me only a week later ended really bad and coughing phlegm with speck of blood and a severe pain in my left rib and sometimes in back at same level five weeks on I still have a mild pain there I decided to go to a private clinic which to my dicust has misplaced my file and told me from glancing at my CT the airways look inlarged and it my be this I am being treated for GERD which I don't feel I have. Does everyone with Bronchiectasis cough up loads of phlegm as I am only coughing up small amount less than the size of a fingernail and it's clear unless I have an infection, I have been waiting on the doctor to get back to me for over three day now and I am going out of my head with worry because if I do have it when he looks at the CT report and I am going to feel this tired and weak for the rest of my life I will never cope I need to be busy I can't cope with resting and sitting about, does this sound like I have it? Persistent cough but not loads of phlegm . Sort of breath on mild exhertion, wheeze when I have an infection, exhausted, feeling that I can't get a deep enough breath, post nasal drip, mild discomfort/pain in left rib and back, sorry this is so long I'm  sooo worried and confused about this maybe not knowing is worse but I'm up to high doe.
    • simon74257
      simon74257 natasha_1983

      Posted

      Hi Natasha.

      Have you been refered to a bronciectisis specialist? From my experience being newish to this it shows up on the scan as enlarged bronci which does not taper off like normal lungs. Apparently it can be caused by tb, hooping cough or infections etc. Maybe you have it very mildly?

      Have you sent a sputumn sample off to the lab to see which bugs are growing in your sputumn? I am 33 and have (mild bronciectiss) they say , dosn't feel mild but i could up small amounts every day or other day usually a clear colour/white ish. I don't wheeze much but take good inhalors. What is your peakflow? Has it dropped? And what are your oxygen levels? I think this private doctor is your best bet to getting to the bottom of all of this.

      Hope you get to the bottom of it soon. There are some lovely people on here with great advice and experience who will no better than me.

      Hope you feel well soon. Keep positive. Things could always be worse.

      Simon.

    • natasha_1983
      natasha_1983 simon74257

      Posted

      Thank you for replaying my peak flow is 30 and oxygen is 98 so no change from I normally be. I am still waiting on confirmation but a lot calmer today Lol as you said it could be worse. I was making myself worse with the lack of sleep and worry. Lots of chest pain in right side and back don't know if that would be a symtoms but will doc in morning.

      thanks again 

      Natasha 👍

    • simon74257
      simon74257 natasha_1983

      Posted

      Yeh, the worry deffinetely dosn't help, And your peakflow must be more than 30? Do you mean 300?

      And it sounds like an infection. Oddly enough i was talking to a friend the other day who had got plurisy, she said it's like a fluid that develops in the insides of the lungs and that that gave her some pain. Ask about that also, allthough im sure it isn't that i just thought of it off of the top of my head.

      Hope they get to the bottom of it asap

    • svetlana60620
      svetlana60620 natasha_1983

      Posted

      Hello everyone! I am Svetlana and I have big problems like you. I am 53 years, a am a professor in high school.I have HOBPsince thirtieth.I was ok with discus seretide and some infusion , and while we discover bronchiectasis in the lower part of both lungs...eight years ago,                     From that time I was constantly sick , the worst thing is not getting out of bacterial infections.Once a month I drink antibiotics  because  I have different types of bacteria...clebsiela , escheririhia a commonly pseudomonas .Deploying a lot of green slime hurting the lungs , do not know how I work and live.I can still move around . I find dificult to teach and speak.The doctor says that my lungs were in very poor condition,the proposed operation failed lobe.I am afraid that if they operate. There may be the appearance of bronchiectasis elsewhere. What  should I do?

      regardssad

    • alouette
      alouette svetlana60620

      Posted

      Hi, Svetlana, based on our name and sentence structure I presume you live somewhere in Eastern Europe (where I live) or Russia. Do you think you have a good doctor and good medical care? You should buy a nebulizer and inhale antibiotics directly into your lungs in order to reduce the bacterial load.

      If there was a chance of operating, I would definitely do it because BX is making life very complicated. I know I cant operate because my bx have spreaded too much.

    • svetlana60620
      svetlana60620 alouette

      Posted

      Thanks for the tip..You are right , Iam from Serbia and in Belgrade in the v VMA clinic have excellent thoracic surgeon. .but ,I fear and suffer!

      hvala!

    • alouette
      alouette svetlana60620

      Posted

      Oh my god, we are from the same city! I suggest you consult other doctors, VMA is good, but they're stuck in the 80's with their treatments. My doctor is Goran Plavec, he used to work at VMA, but he retired.

  • eve75
    eve75 Guest

    Posted

    Wow! This is my 1st time ever on this site and I am blown away!

    I was diagnosed with Bronchictasis at the age of 3 years old. I spent my childhood, teenage and young adult years in and out of hospital for regular 'tune ups'.

    I am now 40 years old, have 3 very busy children and am also a primary school teacher. Due to tiredness I have had to cut my hours down to 3 days of work.

    I am finding that even though I can push through many infections, I am always feeling exhausted and am not keeping as fit as I once was.

    • HAYDON
      HAYDON eve75

      Posted

      Eve3,

      Do you do any physio? See one if you have never been seen. 

      You will feel less tired. They will show you how to improve your oxygen level.

    • HAYDON
      HAYDON lana30007

      Posted

      Hi Iana,

      Physiotherapist.

      Mine taught me breathing  exercises -  lying on side and breathing deeply, then coughing which then helps to clear your lungs. 

      My my doctor referred me to my physio. I am in UK.

       

    • lana30007
      lana30007 HAYDON

      Posted

      Thanks Haydon. I am doing neubilizer and flutter so far. Also, walking.
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