Boehringer Ingelheim AIRTIVITY clinical trial

Paula - Have you tried reducing the intensity or duration of your airway clearance to see if you are inadvertantly increasing your sputum production?

Here is what I mean - you airways need mucus to function. If during clearance you strive to get to zero mucus coming out, your body will respond by producing more mucus to coat your airways, leading you to more coughing and clearance... It can become a vicious circle. The goal is actually to keep stagnant mucus from pooling and becoming a harbor, not to get rid of all mucus.

Seven years ago, I was taught buy an old-time respiratory RN to clear for 10-15 minutes and stop. If I later coughed up a bit more, so be it. I was pretty sick with MAC and Pseudomonas at the time, so I cleared for 15 minutes 3 times a day.

When I changed pulmonologists and stared using 7% saline, everything I was reading was about people clearing it all out, so I tried - often for 30 minutes or more. The result - sore throat, sore ribs, more mucus - misery. My new Pulmonologist had a staff RT, and when I complained to her, she said "You're trying too hard. 15-20 minutes AT MOST." Then she explained about doing too much and creating more mucus. I backed off, only doing more during an exacerbation.

Now, infection free for over 5 years, exacerbation free for 2, I do airway clearance for 5-10 minutes once or twice a day after using my inhaler and exercising. I had stopped 7% saline with my pulmo's blessing, but now have restarted 1-2X/week because it helps during smoke/allergy season.

There are a couple other people on this group giving shorter clearance a try - I'll see if I can remember who, and ask how they are doing.

Paula - Have you tried reducing the intensity or duration of your airway clearance to see if you are inadvertantly increasing your sputum production?

Here is what I mean - you airways need mucus to function. If during clearance you strive to get to zero mucus coming out, your body will respond by producing more mucus to coat your airways, leading you to more coughing and clearance... It can become a vicious circle. The goal is actually to keep stagnant mucus from pooling and becoming a harbor, not to get rid of all mucus.

Seven years ago, I was taught buy an old-time respiratory RN to clear for 10-15 minutes and stop. If I later coughed up a bit more, so be it. I was pretty sick with MAC and Pseudomonas at the time, so I cleared for 15 minutes 3 times a day.

When I changed pulmonologists and stared using 7% saline, everything I was reading was about people clearing it all out, so I tried - often for 30 minutes or more. The result - sore throat, sore ribs, more mucus - misery. My new Pulmonologist had a staff RT, and when I complained to her, she said "You're trying too hard. 15-20 minutes AT MOST." Then she explained about doing too much and creating more mucus. I backed off, only doing more during an exacerbation.

Now, infection free for over 5 years, exacerbation free for 2, I do airway clearance for 5-10 minutes once or twice a day after using my inhaler and exercising. I had stopped 7% saline with my pulmo's blessing, but now have restarted 1-2X/week because it helps during smoke/allergy season.

There are a couple other people on this group giving shorter clearance a try - I'll see if I can remember who, and ask how they are doing.

Hi Leslie. Can you tell me the name of the antibiotic you took that is a cousin to penicillin? I’m allergic to penicillin so I would love to know if there is another drug I can use if needed.

I appreciate this comment, as I have been working too hard to clear my lungs. And my airway & lungs have been feeling very irritated along with getting sore throats. I thought I was supposed to get everything out and it just is so irritating. I am going to try and cut down the time I use to nebulizer and clear my lungs. Which brings up another subject of poor education from pulmonologist who do not understand, have the time, nor care to educate their patients. I had NTM in 2002 & having been seen by pulmonologists in 5 states since and none of them attempted to really educate me on airway clearance – they're only information was use a nebulizer use your aerobika but no one really attempted to explain the whole process to me. I am an educated person and do all of my research and yet I still have been doing it wrong. Thank you so much for helping to educate others.

I'm still waiting!

Hi Leslie. Can you tell me the name of the antibiotic you took that is a cousin to penicillin? I’m allergic to penicillin so I would love to know if there is another drug I can use if needed.

Hi Susan,

I’m new to replying and don’t see the reply I sent to you yesterday so am giving it another try.

The antibiotic is cefuroxime, It’s a cousin of penicillin but generally tolerated by folk’s allergic to penicillin. If you have a severe reaction to penicillin- like going into anaphylactic shock I don’t know if it would be suitable for you.

My allergic reaction to penicillin was decades ago and not severe. My pulmonologist is having me tested by the allergy department to see if I’m actually/still allergic. I didn’t know that could be done!

Hope that’s helpful,

Leslie

This "... Which brings up another subject of poor education from pulmonologist who do not understand, have the time, nor care to educate their patients..." is why I feel like forums like Mayo Connect are so vital to our health!

Here is something to consider - doctors are not, nor have ever been, primarily "health educators." Their job has been to treat each patient and move on. In years past, it was up to each doctor's staff to provide patient education.

Remember the days when every doc had one or more nurses, who came in after the doctor and gave injections, demonstrated wound care, told you when to come back or what to do if a medication didn't work, showed you how to use a nebulizer, and gave you a list of foods when the doctor told you to change your diet?

My old pulmonologist was the last one I knew who had his own nurse, and she retired when he did 5 years ago. The new doc shares a respiratory therapist with pulmonologists in 2 other clinics - she is there once a week. And she has a trained medical tech to do breathing tests (and everything else.) The doctor gets 40 minutes to see and document a new or complex patient, 20 minutes for revisits.

If you are fortunate enough to be part of a large clinical practice that has specialists on staff, yay! But most people are not. I am lucky my organization has a coordinated pulmonology/sleep health/allergy/speech/ENT department with a consulting ID doc. Together they are working on locating and/or creating educational brochures, videos and classes to supplement what they can do in the clinic.

Please join us in using, supporting and promoting Mayo Connect, National Jewish Health, NTMir.org, and others providing the information we need to stay healthy!