Mucus over the years

I believe more mucus is produced as BE progresses. But there are probably MANY exceptions to that and you would need a more comprehensive CT etc. For instance Mucus coming up to the throat all the time is often a sign of GERD or silent reflux. I have had BE for a long time and my mucus has increased over the years but then I have Pseudomonas chronic infection. Pseudomonas produces alot of mucus generally. When I do antibiotic infusions my mucus production goes down to very little but builds back up quickly afterwards. Without so much infection it seems I do not produce much mucus. Even my constant throat clearing goes away temporarily. Also my mucus becomes darker, has a taste and is more difficult to get up as I get closer to become sicker. Everything considered I think there are no hard and fast rules with mucus and you need a bigger picture for sure. At the same time I believe my own mucus production with its quality and amount are very relevant (for my situation).

I was diagnosed BE, MAC and Pseudomonas in early 2024. At that time I had very little coughing and no mucus coming up. Because I had few symptoms, watchful waiting was recommended. Around April 2024, I discovered this wonderful group and learned about nebulizing and airway clearance, and began doing both. Inthe beginning of nebulizing and AC, I still had little sputum, although the saline made me cough Gradually over time more and more coughing happened and I started having some mucus production. Although it was hard to get the mucus into my mouth and into a cup, (I mostly swallowed it), I knew it was there . I changed pulmonologists at the beginning of this year. This past August I had my first exacerbation, and thankfully it was relatively easy to get a sputum sample and take it to the lab. The early results showed Pseudomonas. I'm still waiting for the results for MAC. My pulmonologist prescribed levaquin for 7 days, and I began feelling better almost immediately. Since that time my symptoms have been dialed back to the level they were when I first got diagnosed--very little coughing and no sputum. When I emailed the doc about that, her PA explained to me that I have colonized Pseudomonas, and treating it will knock it back, but not eradicate it. If I start to have frequent exacerbations, they will recommend tobramycin to keep it at bay, but that is to be determined later. It is possible that I may have infrequent flares. (I'm planning on very, very infrequent flares!) The fly in the ointment for me right now is that without mucus, I can't provide a sputum sample. Originally the doc said that that was no problem, that I could get another broncoscopy. I DON'T want that. That's a discussion we will have when I see her in November.

@bernadene24 @irenea8
Thank you both for taking the time to write a response.
Irene, yes....I do believe, as you have mentioned before and above, some of what I am doing and is causing me to do, is due to LPR, Silent Reflux and possibly the small hiatal hernia. The LPR, as I have said before, is my self diagnosis because no gastroenterologist(s) or ENT doctor(s) found it or said I had Acid Reflux or LPR after several tests.
I just know what happens at night, a burning tongue, has to be acid coming up if I slide down on the wedge pillow and find myself on my back when I wake up. It happened almost all the time before my diagnosis and seeing all the doctors I sought out to find out what was wrong, When I slept on my back for a good few years I would wake up with a burning tongue.
Interesting , so far, both of you in your response regarding my question, have/had, are fighting, the ugly psuedomonous. That also must be so frustrating and cause one to say "now what do I do with it this time around." I know the longer we are in this journey the more possible decisions will have to be made..meds etc.

As of now it's just the Bronchiectasis with the Intercellular, (with "watchful waiting" due to the low infection load) the supposed LPR and the hiatal hernia that could all possibly be a factor with my daily, nearly constant, feeling that keeps telling me to "huff that stuff out".
Thanks for your thoughts and information.
Barbara

@blm1007blm1007 Hi Barbara: You mentioned the nearly constant feeling that tells you to huff that stuff out. The constant pooling (that in my case creates that feeling of a need to huff), has abated a bit and I get a few hours during the day to enjoy a little respite from that. I figure the MAC treatment has knocked it backed somewhat - but it's certainly not gone after 9 weeks on meds. Or maybe the Haemophilus was the mucus producer and that got knocked back. IDK. Or maybe the Brinsupri is helping. At the height of my infection early this summer, I filled a plastic grocery sack daily with paper towels and tissue from expelling all that.
On a daily basis, how much sputum do you produce as you "huff" it out? I think you said you feel ok in general. Still, this disease is a lot of work.

@ursala7 I try to clear each time into a clear solo cup. To be sure I always have one near I keep one in each room and also started having an extra one if walking through the house.
I empty each into another large solo cup and let it sit nearly 12 or more hours for all of it to settle to the bottom of the cup. Once settled I can see how much gathered. It appears to be nearly a tablespoon each day per what I see in the cup at the bottom.
Yes, I feel fine. Better than I did in the beginning and better than I felt a month ago.
We each are so different in our health problems but the one thing that is the same is our being diagnosed with Bronchiectasis and then it goes from there....,meaning infection, no infection, type of infection and other health problems that do, more than likely, make things hard to figure out.
The clearing, as I have verbalized, takes much time out of my day and night with it being nearly a constant thing. I would imagine it is the same for you with it stealing much of our time.
I do have some periods in the late afternoon when it subsides some. I keep thinking that it might be because I cleared most of what wanted to get out, after nearly nine hours of bringing it all up and out. It begins again after I eat.
Barbara

@kathyjjb Have wondered how you are doing with working up that sweat while on the "treadmill" to get the mucus up.??

I have some good news.
The sputum sample sent into Tyler had 8 colonies but would not grow to be able to show susceptability. It appears it has been knocked back per my understanding.
I wondered why I have felt different this last month. I just feel stronger.
So for now, after four years of knowing I have Bronchiectais with an Intercellular infection and no antibiotics, I appear to have knocked it down. Wow, hard to believe and hope it is truly correct, the test.
I still can't seem to get the weight on.
The mucus amount amount with clearing does stay the same.
How is it going for you?
Barbara

@blm1007blm1007 Hi Barbara, I'm still working up a sweat on the treadmill. Bringing up a little mucus (pea sized) but interestingly, 4-5 hours later. My guess is it's coming from lower lungs and/or smaller airways. I'm doing good, thank you!

Congratulations!!!! 8 is super LOW. Did they tell you if it just grew in the broth? My last 2 culture counts were 8. The first of the 2, was 8 on the plate and broth and the last one was 8 in the broth (which means their viability was low) and none on the plate. Either way, both were super low that my ID doctor questioned whether it was environmental contamination. I'm over due to send in my quarterly, so really need to work on that.

I have had periods of no appetite and I just ate anyways-what I would normally eat. Often, I would get my appetite back after I started eating. Low BMI is a big risk factor for NTMs and requiring antibiotic RX.

I was so happy to read your news!!

Kathy

@kathyjjb In thinking about you I am not sure if we talked about how much fluid intake you are able to fit in, in a day.
I remember someone saying they keep track of the humidity in the house with a testing meter. Was that you?
I ask because I noticed a difference, for me, when I "do my thing", so to speak, by putting a hot plate in the bedroom and a big pot of water on it to help humidify the room.
I truly think the fluid intake during the day of slightly warm water and what I do at night for the bedroom and sleeping makes a big difference.
I have a feeling you do all that, one way or another?
The other thing that helps me, if I haven't said it all before, is doing the self percussion with my hands and fists (hands for front, fists for doing the lungs at my back) using the rubber suction percussion cups, the KINTEGOOD Massage Hammer Meridian Back Knock Massager .. along with the deep breathing exercises and a quick postural drainage position. Along with all that, now, have been the exercises the speech therapist has me doing...approximately 7 or more different exercises. I do one or two at home as often as I can and the others with my office visit with her. I believe the speech therapist I am seeing is an extremely dedicated person who gives great thought to finding ways to improve methods beyond what the average speech therapist does. I say that because of all I have heard and found out about her.

I consider myself extremely fortunate with finally having what appears to be local doctors and professionals interested in us Bronchiectasis patients. The Infectious Disease doctor recently finished spending time up at NJH. They send the sputums to NJH for testing.
They are working on becoming a Center of Excellence.

Also, I still send sputum to Tyler every other month and the pulmonologist I see locally now liked that idea, my wanting a check and balance. This last report from Tyler did not report as usual, so I don't know about the broth or the plate etc. But I think I will ask and see if they can tell me that.
For me my appetite is good .....yet I can't seem to get past 101 lbs. and therefore I can't up the BMI, as yet. The speech theapist gave me a couple of protein drinks today to try, plant based which I prefer. She is always giving me things from the "medical cabinets", items she knows the department has, to help with anything I happen to discuss with her. Nice to have someone who pays attention.
Have you gone to a speech therapist? The local pulmonologist that I now see is the only one (5 other pulmonologists in four years) who suggested and referred me to a speech therapist.
I know Sue on this Mayo Connect was glad she did see a speech therapist.

Great Kathy. Sounds like you are on the road to moving that mucus.
For me also, the mucus surfacing to come up and out happens a good few hours later. My lead pulmonologist at NJH stressed the fact that it might be a few hours later, after the therapy session, that the mucus would move up and out.

Wishing for you, and wanting for you, all you are trying so hard to help yourself with....
Let's keep on keeping on!!! Our counts are good and that's a "big thing" and a "good thing".
Barbara

I also walk around with a cup everywhere for constant mucous. I do airway clearance and exercise daily so feel okay otherwise. I have MAC and mild BE. I do fatigue quite easily. I am doing watchful waiting for a year but considering trying 2/3 ( Azithromyacin and embu) soon. My pulmonologists would like me to try them. Thoughts please. No other health issues( 76).

@gurmom First are you in the USA and are you having sputum tested that shows how much of an infection you have. Do you know the name of the infection, the type of infection.? Did the doctor speak in how many colonies you have or did it receive a + number?
As you probably know there are infections that are very slow growing and others that are fast growers. Which do you have?

For me I have a slow grower and have kept myself on "watchful waiting" since being put on it at NJH in Oct. of 2023. I am now 84 as of this month. I feel strong but my BMI is a little above 17 and needs to be better. I do light exercise most every day, I do not get fatigued, my appetite is good. Y es, I also to the nebulizing and air way clearance techniques as I stated. I make mucus plugs that come up with the huff coughing. It seems like some days more than others come up. Some are very, very, very tiny and others are nearly the size of a dime. My plugs are usually yellow as is my mucus.

With input from a couple of people on this site and their knowing how I felt, fine, knowing my age and the fact my infection , intercellular, was a low load and a slow grower they suggested I think about not going on the antibiotics. Personally for me I am glad I did not start the antibiotics.

Now, with regarad to clearing due to the constant mucus.
Some people don't have our problem of the constant need to clear with having Bronchiectasis and I believe that I have a couple of problems that contribute to this constant feeling in my throat and "need" to clear. It was shown with a swallow test that I have a small hiatal hernia. Then I also believe I have what is called LPR. I believe and I may be wrong..that both are a part of what started and contiues to cause the constant clearing.....both the LPR and Hiatal Hernia.

Flashback: At the very very beginning, the majority of time the constant clearing from the start did not seem to bring up colored mucus, now that I think about it. However I would have a gel like greenish substance come up every once in a while. Now I know for sure that that greenish substance is what is called a mucus plug. That color subsided after doing all we do for the Bronchiectasis and mucus but the clearing and mucus continues.

I found that if I eat slow, really slow, don't rush my food as I foolishly did all my life before all this....I don't have as much mucus after I eat. I think it has something to do with both LPR and the Hiatal Hernia casuing a motility problem....of which I was diagnosed with at NJH but this, the motility problem, was never fully explained. So with deep thought I have come to believe those two things are related to the motility problem they verbalized I had and causing the constant clearing. I read that a hiatal hernia can causse mucus drainage. The LPR can cause an acid problem and for me the only time I appear to have any possible indication of acid is at night if I accidently turn over onto my back. I wake up with a burning tongue. As it has been believed by NJH and my local pulmonologist, they believe acid reflux plays a part in the development of Bronchiectasis.

I think overall, my thoughts, multiple things with our health make it difficult to pinpoint the "why' and that sometimes not all health problems are identified or identified correctly.

Take your time, read all you need to read on this site, pay attenttion to yourself, your body, eat healthy and reflect on all. Be patient until your 'gut' tells you what direction to go in. That is how I handled it so far.
Barbara