Dr says: "You will know if something is there."

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Hi all,

My doctor tells me to stop trying so hard to clear my lungs, because I will know if something is there.

Is that true?

Do you guys feel and know when there is something in your lungs and you should be clearing it out?

I really never feel anything, so I always think I have to keep trying and do a lot of physio often with zero results. It would be great if I could cut back on my physio, but I'm a bit scare to since I don't want to leave anything in there to fester.

Thanks,

Ida

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17 Replies

  • Posted

    I don't know what to tell you, Ida.  I have a mild case of it, but I constantly have mucous coming up that just sits at the back of my throat, which is annoying.  I sometimes take an expectorant if my chest feels tight or my breathing is not as good as usual.  But everyday, I can get mucous out.  I think constant exercise helps.

    The only time I really "felt anything" was right before I was diagnosed.  I had trouble breathing and chest pain.  Went to get my heart checked out and it was fine, but they found out my lungs were not!

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    • Posted

      I also bring up mucus, but it's normally clear. 

      A respiratory therapist told me that if I am always clearing my throat, my body will automatically produce more mucus, so I should try not to clear my throat so often. I don't know if that might help.

      Ida

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  • Posted

    You will definitely know, Ida. 

    It feels like a crackling, sticky feeling when you breathe. Do you know how to do a huff? If you huff you will hear it and feel it bubbling away.

    I have never not had mucus and find it very very difficult to clear to "dry". I didn't know you could have bronciectasis without mucus!

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    • Posted

      Thanks Jenny. I do the huff and I don't hear or feel anything. I wish it meant that I didn't have anything, but then I will do a lot of physio and I will bring up very little.

      Question to you: If you don't clear until you are dry, are you then getting a lot of infections or do you just clear it out later?

      And how long is it safe to wait in between doing phyiso before it starts festering and causes an infection?

       

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    • Posted

      What do you bring up? If it is clear I think it is just the normal lubrication in the lungs. Who originally told you to do physio?

      I don't get many infections, maybe one or two a year. But my specialist is always telling me to do more physio. It was very frustrating because though I drink a lot of water, the mucus is very thick, huge in quantity and green. I found it hard to get up until I was given an iNeb for saline inhalation a few months ago. I found it helps a lot in thinning it all out but I still don't get the last dregs out. I've had to content myself with the the fact that for me, getting it all out is impossible and I've done everything I can.

      I'm a bit concerned you will burst a blood vessel and tire yourself out a lot if you're doing physio that doesn't need to be done!

       

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    • Posted

      Yes, you are right. I will cut back on my physio. 

      Thanks for the help and the information about what I manage to bring up is probably normal lubrication.

      Glad to hear that the Neb thing is working for you. It's always so great when we find something that can help our situation a bit.

      Thanks again,

      Ida

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  • Posted

    Hi Ida, I find it very difficult to know when/when not to clear my lungs. I agree with jenny, but find these signs are not there all the time with me, sometimes after I have eaten a blob of mucus appears when I wipe my lips. But now I try and do this 3 times daily, mainly because infections are a regular occurence this year. This year it has taken over my life, almost, to try and stop the infections. My physio takes each time about 20 minutes. Sometimes there is nothing but 'white fizz' and others a great deal of mucus. Even the white fizz can contain traces of mucus. Probably it is best to do the physio regularly, gaging its length on a trial and error basis.
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    • Posted

      Thanks Janet. Yeah I wish we could tell when we had something to clear. It sure would make it a lot easier instead of always trying - just in case.

       

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  • Posted

    Gollee, Ida,  how lucky you may be not to feel anything there.  I know when I have to clear my lungs altho I don't do 'clearances'.  I just wait for it to come up. It clears itself and sometimes with a little help like right now I feel I have to do something because I can hear it rattle and I'm coughing which means I have to get something up.  So I take mucinex (I forgot it last night) and I'll drink 12 oz of water and nebulize albuterol and in short time it'll come up by itself.   So YES, it's possible to feel when you have to bring something up.  I think the main thing for every single one of us is to focus on drinking tons of water.  I know it's wrong to drink out of a plastic bottle but at times I use it to encourage me to drink.  Like a goal to finish the bottle in 15 min for example.  If I put water in a glass I don't seem to have the same goal.  And I have a glass of water at my desk and one at the kitchen sink and a bottle by the bed and so on.  And everywhere I go I drink and I'm still not getting enough water as I'm usually always dry.  If we drink 8 large glasses (like 12 oz) a day (I know they say 8 oz but personally I think that's such a tiny amount like the size of a cup) we should have our mucous coming up automatically whenever it's there.  Our body needs 8 glasses to begin with so it would make sense that with BX we need even more water.  I know I don't get as much as I should and I may not be the only one.  And coffee and tea dry us even tho it's liquid so I don't know whether we should count that altho I have read that they count as part of our 8 oz a day.  That'll all off the subject, Ida, I know.  But stop trying so hard to bring something up and just know you are doing all you can with these other remedies and let it come up by itself :  )

    Tabatha

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    • Posted

      Hi Tabatha.

      Yes, I do drink a lot of water and tea as well.

      I wish I could be like you and just wait and see if it would come up by itself, but I'm afraid not to clear out anything that might be there. 

      Thanks for the encouragement. I will try to cut back on my physio and see how it goes. It sure would make my life a lot easier.

      Thanks

       

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  • Posted

    Ida, I read everyone else's comments (all women, I notice) and have to agree with Jenny about bursting a blood vessel and the normal lubricant.  When I read your messages I do detect that you are really trying too hard to do something that may not be necessary in your case.  I'm thinking you do not have infection at all - your mucous is clear or white so don't bother with feeling u have to get something up.  THere is nothing there to bring up.  It's possible your BX is only in one place in your lungs and it's clear.  Do u know where the BX is?  My CT scans from years back showed I have it in several areas but mild and next CT it might show it's not in the same place but it's in another lobe.  So it's possible you just don't have a severe case.  I have never been told to do special techniques to get it up.  Never.  I've not been told anything to do except my inhalers and I don't know if they mean the inhalers would help BX and I don't ask as I don't have problems.  I think u have no infection.   I think you are doing well - just trust your body and trust that you will be fine and you will know when there is something there to get up.  And don't forget, that new vitamin I think you are trying - should keep you free of infections.

    T/

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    • Posted

      Thanks Tabatha, for your encouraging words. I really appreciate it and I believe you are right. My BX is mild and only in my right lower lobe.

      My first pulmonary doctor - the one who discovered my BX - was very bad in that she scared me so much. I don't think she knew very much about BX and she acted as if I was going to die any minute. She send me for all kinds of tests - even a PET scan, which I refused. She would call me up and tell me that one of my sputum samples - she had me do tons of them all the time - came back and it showed that I might have this extremely rare bug that only a handful of people had ever had and they were all dead- oh, or it could just be from the water in my mouth. Anyways, I finally told her how much her negativity hurt me and I fired her and now have a much better doctor. However, I think some of that fright is still in me and that is why I'm so afraid of leaving anything potentially harmful in my lungs.

      However, thanks to all you guys and your great responses I feel like I'm coming to my senses and are cutting back on my physio. I also feel less scared about the whole thing.

      So thank you to all of you on this great site. I appreciate you and all your help.

      Ida

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    • Posted

      OMG I can't imagine having a doctor like that.  Mine are so calm! She must have been young or new. I think it's ignorance. I read that BX is very rare I suppose compared to other conditions.  My first pulmo. told me 'you have the disease that the pale Englishwomen ' Lady somebodyorother' had(that was the Mycobacteria avium complex) and he scared me a bit and sent me to Inf. Dis. dr. and I panicked. He would have had me on 3 antiobiotics that day but thank God he sent me to the other dr who discouraged all drugs. Turned out it wasn't that one but another mycobacteria, not as serious.  I started reading everything I could find on the subject and I was scared until I learned that sputum samples don't nec. have the bacteria in them and if they do it might have come from the mouth and not be in the lungs at all.  Unless you can bring up a big fat green sample all at once and know that you coughed it up from deep down, it may not come from the lungs or even the right place in the lungs.  How are u going to cough up something from the lower lobe easily.  Maybe it can be done I don't know.  So even sputum samples can't be relied on so to have done so many for you is ridiculous.  My doctor finally told me not to keep wanting to do samples- (I did want to).   So now I don't and it's been 2 years since I've had one.

      And we keep reading on this site about people who have had BX since birth or childhood - can u imagine?  I bet they don't worry too much because they've got bigger things going on probably if they've had it that long.  I'm more worried about picking up a pneumonia germ from somebody because that could really be serious the older we get.so I try to do what I can to be healthy and not worry about the sputum.  When we're 95+  and unable to cough that might be the time we need a therapist and help getting it up. : )   With that I'll say goodnight..    You don't need to reply to this, Ida.  I just write when I think of something.   Hope it's useful.

      Tabs.

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    • Posted

      Thanks Tabatha and yes; it is always useful when you write. 

      You have such a great attitude and are of course totally right about not worrying. I always appreciate your input and you set such a great example for me, and maybe others, on how to handle our BX.

      I guess you went through one of those "I don't know what I'm doing doctors."

      It's not a fun experience. I wish they would say; "Hey, I really don't know much about BX so let me send you to someone who does."

      I've finally found one of those doctors (Primary; not Pulmonary) and although she doesn't take my insurance, I gladly pay out of pocket to see her.

      Have a wonderful day and thanks again for you great feedback.

      Ida

       

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  • Posted

    Hi Ida, my experince is that I have not been able to bring up sputum during the day. My lungs aways clears themselves right on scedule beween 7 and 9pm daily. I can tell when they have completed their task because I can no longer here the rattling in my chest. This seems to go along with what your doctor told you. I always know when its time to clear my lungs becasue I begin to cough and it will not stop until I clear. I use the doggy style down on my knees lowering my head. About five minutes and I'm done.

    Hope this helps.

    Best

    Russ

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    • Posted

      Hi Russ,

      Wow, you have such a great and easy method. So glad to hear that this is actually possible.

      I also use the doggy style and a lot of huffing as well. I used to do physio over the bed, but it was just too hard. Doggy style on the floor is so much easier.

      Thanks Russ,

      Ida

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    • Posted

      Ida, I sure glad it works for you. I do like the way my lungs make the decision about when it's time to cough up the gunk.

      Keep me posted please. I can think I can see that we in our group have become a sort of "Megabrain" working the problem we all share.

      Best

      Russ

       

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