Hi, I was diagnosed with bronchiectasis 19 yrs ago but only just having issues.

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All my life I've had chest infections and bronchitis but only diagnosed 19 years ago. I've now been signed off work for 4 weeks and for another 3 on top of that, as I've been getting so breathless and just plain exhausted. I've also had really bad heartburn, which from other discussions I've seen a lot of people get. I see my consultant this month and am worried I won't be able to work again because the way I feel now it's never gonna happen. I'm only on medication for heartburn and a ventalin inhaler (which I don't use as it doesn't do anything) Is there hope out there?

 

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  • Posted

    Yes. (Although I know it's frustrating--I'm in my fourth year of trying to get disability benefits because my pulmonologist says there's no way I can go back to a regular job, since my primary symptoms are exhaustion and hemorrhage. But since it's not a "visible" disease, getting government people to believe you're sick is ridiculously hard.)

    But yeah, there's hope. When you see your consultant, maybe ask about a chest x-ray, get an idea of what might be going on in there. You may need antibiotic therapy, you probably definitely need a different inhaler (I got switched from Ventolin to Symbicort a few months ago and it helps me a lot more), and supplemental oxygen might be worth a try. Those are just the things I can think of, but just from your description, I'd say you probably need some meds tweaked.

    Interesting that you brought up heartburn--I have acid reflux along with BX and no one's ever suggested they might be connected.

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  • Posted

    Hi Debs,

    Are you producing lots of sputum??

    If so you could ask to try some carbocisteine, this is sputum thinner. For me this helps to release most of the tightness, not all of it, I used to suffer with. 

    A lot of people find walking helps with the BX. But the tiredness is here to stay sad

    You WILL come out the other side of this, and you will go back to work, it just takes time to get your oomph back.

    I have bad times and it has taken months out of my work life. But when your body says chill, you're going to have to take note.

    I'm sure others will have more to say and help you out.

    Gail.

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  • Posted

    Hi I also have BX which was diagnosed through a lung biopsy I had such a severe infection in my lung the doctor had to put me on 3 different antibiotics and even one by IV for 10 days and it finally went away and I feel so much better now but I was like you just exhausted couldn't breathe and it was really really putting a damper on my life. I was told a long infection is extremely hard to get rid of and you really do have to be very proactive with a lot of antibiotics and I'm thinking maybe that is your problem. Good luck!

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  • Posted

    I had no idea the horrible reflux I started having at the same time with my latest flare up was even related! Wow!So glad you mentioned that.  I find that generic Omeprazole once a day is helping a LOT.   I’m in the US and was already on social security disability due to chronic fatigue, but now with this new development of this disease the “tiredness” is at a level where even talking is too much effort.  How long can this flare up last? (Lung pain, coughing blood, cold sweats & severe fatigue) I’m going on 2 mos. It’s GOT TO GO!  I’m praying for you all.

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  • Posted

    Hello all...

    Just wanted to mention that I've read that PPIs such as Omeprazole and Nexium have been found to increase the chance of pneumonia. In response to this news, I went off of all PPIs and Zantac (after a couple of decades on both) and have found that papaya enzymes have completely taken care of my acid reflux. At this point, I take 2-3 papaya enzymes a couple times a week. I feel it's much better for my health (not to mention my budget!). One word of caution, however... if you choose to go off of your PPIs do it GRADUALLY. I did it cold turkey and was really sick for an entire weekend...  :=/

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  • Posted

    Thanks for your replies, it's so helpful getting other peoples experiences. I'm considering claiming PIP as my friend has a COPD and got it on the first application. I'll probably start losing money soon if I stay off sick much longer.

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