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enormous sputum clearance all the time
I’m finally seeing an ID doc end of this month. I have slight bronchiectasis and MAC. I have endless white/clear sputum. it gurgles in my chest and easily comes past my esophagus all the time. I barely need to start my autogenic drainage, it’s just always ready to be expelled. I do saline nebulizing after a quick albuterol dose every day just in the hopes that the saline is killing some bacteria. This has been my story since November diagnosis. I am 65 and very athletic, my oxygen saturation is excellent. I have two lines of thought. I wonder if you can help me work through. 1) I am leaning towards diving into the big three protocol with fingers crossed, and a hopeful attitude that I will be a lucky one and sail through without terrible side effects. this decision is being prompted by my understanding that chronic inflammation is a terrible enemy in this fight. do you think I am balancing my considerations intelligently? And, 2) when I do my airway clearance, at the end of the saline dose, I’ll extend my expelling time with autogenic drainage and push this whole process close to an hour. This easily produces a half a cup! Then, I just get bored, distracted, fed up and walk away. I’m good for the day, as far as not needing to cough, which has been a godsend. But I am constantly producing all day long, and either subtly or not so subtly expelling it. I’m starting to think I should have a marathon session and just keep going with the autogenic drainage… Is that crazy? To sit for hours and just expel expel expel? Thanks as always for your collective insight!
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Have you considered measuring a day's worth of mucus? Use a paper cup. Before you start make some marks on the outside of it of liquid ounces like 2 oz, 3 oz. Use a liquid ounce measure cup and not solid ounce measure cup. They are different. I think liquid would apply more. Then you could let the Drs know the amount.
Do u have a dr who is educated in the disease?
Dispatch,
People can get well doing airway clearance. If you feel well, please discuss with your Doc before jumping into the antibiotic and ask, if your Doc thinks you need them?
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1 Reaction@dispatchpat Your description of white or clear sputum makes me think that if you have active MAC it is at a very low level.
It also makes me wonder -
Are you nebulizing albuterol, or using an inhaler? I found 2 puffs on the inhaler is just as good as a neb, and adds less liquid to the mix. How much saline are you nebulizing in a day? I have 4ml vials, but I have been given some as large as 15ml - that would be way to much liquid for the lungs.
Is it possible that 7% saline is actually irritating your lungs and causing more mucus production? Some members stepping down to 3%, or alternating the two, is less irritating.
Two other considerations that determine when/whether to treat are the MAC "load" in your body - how much bacteria is found in the culture, and how your lungs look on a CT. This video can be helpful in explaining the decision process.
After using the Big3 for over 18 months, failing to get rid of MAC, and switching to airway clearance with saline, here is my personal point of view. I would need to be shown CT evidence of advanced nodules and/or cavities before I would ever go on the meds again. The effects of the treatment can be rapid and severe, or slow and gradual - but over time the heavy antibiotic regimen takes a toll on the body. It took 2 years after stopping antibiotics to completely regain my lost weight and energy. I still have less stamina than before (of course I am 5 years older😒)
Sue
PS I do 10-15 minutes of airway clearance a day, then walk away. Yes, I do cough stuff up throughout the day, some days more than others, but like you, I get tired of it. You need to decide how much is enough for you.
S
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10 ReactionsIs there such a thing as doing too much airway clearance and how do you know when to stop.
In our large clinical system, we have a Lung Health Clinic with a staff Respiratory Therapist and 2 RT-Assistants. When I was taught airway clearance, they emphasized these things: Hydrate first, inhaler or neb (as prescribed) to open airways, a brisk walk or other exercise to get the lungs moving, then neb saline. When the urge to cough first occurs, suppress it, but when it becomes very strong, stop the neb and do a clearance cycle. Mine was 4 cycles of active breathing, 4 cycles of Aerobika. Then restart the neb. Repeat until there is no more sputum coming out or you finish the saline. Many days, I only need 2-3ml of saline, or sometimes none at all, to get the mucus out. I don't need postural drainage to clear, but I do sometimes need to get up and move to encourage it - bending and picking up around the house, or weeding in the garden starts me coughing stuff up pretty well.
After finishing the neb, I was told to do no more than 10 minutes of breathing/Aerobika OR 20 minutes of postural drainage. More just seemed to cause a sore throat and or sore chest muscles. Also, I was told to be careful to "huff cough" to get the mucus out, not clear my throat or cough through my vocal chords.
If you cannot see a respiratory therapist, there are many excellent videos on active breathing, using the Aerobika or Acapella, postural drainage, etc.
Please consult your pulmonologist for your specific instructions. And if possible, ask to be seen by an RT experienced in treating bronchiectasis or cystic fibrosis for coaching. This will help you find a schedule you can stick to long term. Just like any other life change, one that interferes too much soon gets tossed aside! On a typical day, my airway clearance takes less than 20 minutes, and has kept me off antibiotics for over 3 years with few exacerbations.
Sue
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9 ReactionsThank you. That was very helpful.
I think it really does depend on where you are at with your whole Bronchiectasis situation. For many people a shorter time may be sufficient but for some longer is necessary. I spend a good hour for my first clearance and have to. My pulmonologist agrees that I should spend that much time and he specializes in pulmonary infections, Bronchiectasis etc. He said most people do not want to spend the time that they should.
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2 ReactionsYes bit wants me to take ethambutol 400mg,azithromycin tab 500 mg,Rifadin 309 MG, I started Friday, sick all day lack of energy upset stomach today I took Rifadin got sick vomit don't know what to do
I took my Rifampin first thing in the morning and made sure I ate breakfast an hour later. I took my Ethambutal and Azithromycin with breakfast. They are ok with food. At lunch I took my probiotic 50 billion dose. The lower doses weren’t enough. Then an hour before dinner I had my Rifampin and Ethambutal again. I couldn’t go more than an hour without eating the food or nausea would set in. Hope you can find a system that works for you.