A quirky manifestation of bronchiectasis

Posted by paxmundi @paxmundi, Nov 20 5:59pm

I have a history of moderately advanced tuberculosis I contracted in India at age 19. I am now 73. Had a massive hemoptysis in 2012 and almost died; my bronchial artery was embolized in two places. Slowly after that the bronchiectasis symptoms kicked in.
Coughing up the phlegm doesn't work for me. It always feels unreachable and the trauma of coughing feels and is dangerous in my case. My airways are delicate and bleed easily. The way I have controlled my bronchiectasis since it worsened in October 2023 is by drinking copious amounts of warm water throughout the day ( I now add minerals to it) and eating only soups with high liquid content. Periodically in a day, I can feel a mucus plug building, and then I start drinking a lot of very warm water. It usually clears it within minutes. I cannot handle eating ordinary meals anymore as they cause a lot of congestion and soon thereafter, I start spitting up blood. Once in a great while, I can eat some chinese vegetables, or some other light meal, but very infrequently. When the bleeding comes, if it persists, I end up needing a CT scan to rule out a major rupture, and then a round of antibiotics for a good 10 days. The only other things I don is daily yoga, guaifenesin occasionally, and stack breathing. Does anyone else with bronchiectasis have a profile anything like mine?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I am treated at National Jewish Health in Denver. My understanding is that if you visit the Bronchiectasis dept., you can be treated by their doctors and then go to remote treatment if you have a pulmonologist on hand where you live. This is perhaps the best place to go for your condition.
Still one must be cautious with any doctor. There are therapies that help with airway clearance --- the compression vest (where settings can be lowered) and a new machine called the Volara (another way that aids in clearing mucus).
After 2 spinal compression fractures, I discovered that perhaps my settings for the compression vest (mine is the SmartVest by Electromed) were too high. So as I say, caution in the by-word and a second opinion is always worth it. There are some Physical Therapists that have BE themselves who can give good advice.

REPLY
@happy2023

I am treated at National Jewish Health in Denver. My understanding is that if you visit the Bronchiectasis dept., you can be treated by their doctors and then go to remote treatment if you have a pulmonologist on hand where you live. This is perhaps the best place to go for your condition.
Still one must be cautious with any doctor. There are therapies that help with airway clearance --- the compression vest (where settings can be lowered) and a new machine called the Volara (another way that aids in clearing mucus).
After 2 spinal compression fractures, I discovered that perhaps my settings for the compression vest (mine is the SmartVest by Electromed) were too high. So as I say, caution in the by-word and a second opinion is always worth it. There are some Physical Therapists that have BE themselves who can give good advice.

Jump to this post

Thank you for this lead! All the best to you also.

REPLY
@paxmundi

I probably should take this more often. I will try it and see if it also helps. I watched a webinar on bronchiectasis posted on this site by a Dr. Meretsky from the University of Connecticut Medical School and he said there were no studies showing that guaifenesin helps, but so many here say it does, that it is worth a try. Thank you!

Jump to this post

Hi paxmundi. On one pulm visit I brought up the subject of my taking guaifenesin and he said he did not recommend it. I asked what were his concerns. He did not answer and after a few seconds I said, are you concerned it might dry me out and he said yes. Personally, I don't take it regularly but when I feel I need to "loosen" up my airways I do take it. I believe it helps.

REPLY
@fdixon63

Hi paxmundi. On one pulm visit I brought up the subject of my taking guaifenesin and he said he did not recommend it. I asked what were his concerns. He did not answer and after a few seconds I said, are you concerned it might dry me out and he said yes. Personally, I don't take it regularly but when I feel I need to "loosen" up my airways I do take it. I believe it helps.

Jump to this post

Very helpful comment. Thank you. That was my concern. Can’t quite understand how it both loosens mucus and dries one out, though. Isn’t hydration, moisture the thing that loosens mucus?

REPLY
@paxmundi

Is there any difference between generic guaifenesin and Muscinex?

Jump to this post

Some say the generic is not as helpful for them as the named-brand. I haven’t used either (yet), so have no opinion myself.

REPLY
@vmorton

Hi there, I wanted to tell you that I too have a delicate trachea. I am 75 and have had bronchiectasis since I was 16. As a result of so many years of coughing and clearing my throat I have developed tracheal mylasia, which is a collapsing trachea. It is moderate at the moment, but it does cause some difficulty. I cannot lean my head back after eating or drinking or it will cause me not to be able to breath. Very scary when it happens. I do not take guaifenesin, but instead take muscinex. It really helps to keep the phlegm thin. I hope that helps.

Jump to this post

Mucinex is one brand of guaifenesin, I'm glad it helps you.
Have you been referred to a spech therapist for help in strengthening the area around your trachea? I am finding it very helpful for my vocal chord dysfunction, also caused by chronic coughing.

REPLY
@paxmundi

Very helpful comment. Thank you. That was my concern. Can’t quite understand how it both loosens mucus and dries one out, though. Isn’t hydration, moisture the thing that loosens mucus?

Jump to this post

It is a misconception that guaifenesin or Mucinex dries out the mucus membranes - it serves to thin the mucus, making it easier to lubricate the tissues and easier to clear excess mucus. For me, that means I don't always notice the thinned mucus clearing out easily via a cough or throat-clearing. Without Mucinex, the mucus feels "stuck" in my lungs/throat and I have to work hard to huff and cough it out.

REPLY
@paxmundi

Thank you for responding, Barbara. I have used Aerobika intermittently with some very mild huffing, but this has never brought up secretions. I cannot tolerate saline. The very warm water, which I drink all day long, and the mostly liquid diet is how I have kept the secretions flowing without having to cough. I am on a very short leash with that protocol because I have to guard against coughing and need to keep the secretions thin enough so they just go through me without coughing or can be spit out without a lot of force. So warm water and diet is how I have managed the mucus in my system. I haven’t found another person on the site that has a similar strategy yet and was curious if there were others.

Jump to this post

Yes, I figured you had tried the Aerobika etc. etc. however, thank goodness you found your way to what has helped you without causing more damage.
I agree with liquids (warm moisture in general) it helps me, also. I still am trying to get more liquid intake in each day. I will often use fresh cut ginger in the warm water and at times honey also. I for sure have soup every night and a salad...my evening meals.
Moisture is the key, I think. As I have posted here before I try to also keep the humidity in the house at a better level.. Gas forced air heating and summer air conditioning extracts the moisture and I lived with dry air most of the time and I don't think that helped through the years. I therefore, now, keep the heat at a lower level setting and the cooling at a higher setting and with boiling water every day I think it helps.
I am worried about the possible damages that can further come about with how we clear out the mucus, I just hope I am doing it correctly and not on my way to causing injuries.
Barbara

REPLY
@sueinmn

Mucinex is one brand of guaifenesin, I'm glad it helps you.
Have you been referred to a spech therapist for help in strengthening the area around your trachea? I am finding it very helpful for my vocal chord dysfunction, also caused by chronic coughing.

Jump to this post

Thank you so much. I hadn't thought of that and I really want to try it. Thanks.

REPLY
Please sign in or register to post a reply.