Progression of Bronchiectasis

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I have bronchiectasis diagnosed just 3 years ago after having problems all my life with pneumonia, sinus infections and bronchitis. My days for the past year or so went like this.... Two days active then a day with no energy; now I have a day being fairly active and then two days at least exhausted.. Not sleepy. It's like my battery ran down and everything is an effort, and I feel like someone sucked the life out of me. Then after resting I can have a good day again as if I were perfectly healthy. Anyone else experience this? My lung doctor said I sound fine and my oxygen level is fine, but I think I must be working very hard to get those numbers.

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  • Posted

    Hi

    I was diagnosed in1996. The way your life is very normal for someone with bronchiectasis. I have the experience one day very active then next two days can barely do anything. I get very frustrated, angry very often. How old are you? I was able to get married and have one child. I also get alot of pneumonia even now. Every couple months end up in hospital with pneumonia. Have to tell you finding a antibotic that works getting more difficult. Hope was able to help. Keep in touch!

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  • Posted

    Schatz, sounds very familiar to me. I was diagnosed in 2005, but only began to have problems 2 years ago.

    I've noticed that ftigue seems to be a common symptom for people with BRX. 

    I do know that Azithromycin has made an enormus difference in how well I am from day to day. I ususally can go for 2 or 3 days and need a good day of rest. The main thing is that I'm not sick most of thime. Some of our others members of our group have had good results also.

    I saw my Internest yesterday and she has me on a regular schedule of blood work to monitor Liver Function and EKG to monitor for changes in relation to the AZ

    I am saying this as a possible idea for you.

    Sorry that you are in the hospital so often. 

    Best to you,

    Russ

     

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  • Posted

    Hi Schatz

    My son is 9 years old, he was just diagnosed with Bronchiectasis this year Jun. Did you check with your doctor the problem on sinus?

    My son sinus was caused by disfunction of the nose celia that causing internal cannot auto push out the phlegm. For my son condition, he has been diagnosed with Asthma since his 3 years old until recently we were told became infection and diagnosed with Bronchiectasis 

    He can hardly smell and lost his appetite until recently I started to let him run everyday for at least 15 min and cycling 15 min. The sports help him to cough out the phlegm automatically.

    I am not sure if your doctor letting you use all the asthma spray medicine? Salbutamol Inhaler / Seretide / Flixotide Initially doctor event diagnosed him with ADHD until recently another phycatric doctor check on him and his medical record, we were told he may not have ADHD but because of long term use of all the medication, those medication have side effect that make him look like ADHD. 

    You can google search for all the medication side effect online. Then double confirm with your doctor should you cut down some of the medication or replace other medication which my son doctor's has done for him.

    You need to work closely with your doctor to find out all medication you are using and the side effect.

    I would like to encourage you to go for sports such as running, swimming. Keep going on. There is no easy way out for once patient diagnosed with this syntom. 

    All the best and let us fight this disease together. Take Care and may God Bless You.

     

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  • Posted

    The antibiotic Azithromycin taken prophylactically has proven to be a near magic bullet for me and several others on here
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  • Posted

    Schatz,

    That's very common.  I have had lung issues for close to 30 yrs.  Fours years ago diagnosed with Bronchiectasis.  Over the years, and specially, the past 6-7 years have noticed that I will have a week or two of feeling good and have energy.  Then slowly go down hill to the point of being very fatgued and congested.

    When your lungs are congested and infection sets in, it;s harder to breath and your lungs are not getting the oxygen it needs to keep your energy level up. Even if your oxygen levels are good, both your heart and lungs work harder causing a high usage of your energy.

    The key is to keep your lungs as clear as possible, so you won't get an infection.

    Also exercise, even if it's just walking around the house, when you can, helps loosen the mucus.

    Stay healthy, Beth

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  • Posted

    I have exactly the same symptoms . I am Asthmatic though. Problem id when i tell anyone they tend to not beleive me. I then do more than i should and things get worse. Listen to your body. Only you know what it says no matter what the machines tell you.
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