Sounds like you’ve been through a lot to try to treat and beat this but good on you for persevering. While not the main take away from your post but what did stand out for me was your description of pebbledashed- such a great word, I will have to incorporate it when I describe this journey with my wonky longs. All the best to you, good luck at your upcoming appointment.
Yes, I was taking the antibiotics 7 days a week, and still had positive cultures even though my lungs looked better on CT. So for the past 5 plus years I have managed with saline, airway clearance and Symbicort. I add levalbuterol and budesonide if I have an exacerbation. My most effective airway clearance is from vigorous walking, yoga or yard work followed by huff coughing and sometimes Aerobika.
I had a visit with my pulmonologists this week and they said it must be effective since there are no mucus plugs or infection signs in my most recent CT. Now we are working on getting an effective sputum culture to confirm still no infection hiding in my lungs.
Thank you for sharing your experience and what’s working for you, Sue. I’m so encouraged to hear you’ve been able to manage your treatment successfully without the antibiotics any longer. What is Aerobika and I’m not sure I’m familiar with huff coughing? Sorry for so many questions. Trying to understand the treatment options and what’s worked best for others. All the best to you!
Here is a good video describing airway clearance techniques, including huff coughing and using the Aerobika. Each person needs to experiment to find what works for them.
Here is a good video describing airway clearance techniques, including huff coughing and using the Aerobika. Each person needs to experiment to find what works for them.
Good job asking questions. I am learning learning learning. Trying not to be anxious and believe that this will become an old habit. I am so grateful for all the great info here
Good job asking questions. I am learning learning learning. Trying not to be anxious and believe that this will become an old habit. I am so grateful for all the great info here
Can you share a little about your diagnosis and how you found us here at Mayo Connect?
I would like to welcome you to ask your own questions of our helpful members, we're here to help you on this journey.
Have you been diagnosed with MAC, Bronchiectasis, or both?
Thank you for you gentle reminders that for most of the population AC means "air conditioning " and not "airway clearance ". You're right - many of our routines become old habit and we speak to each other in acronyms - kind of like the military. We'll try to do better!
Sue
Hi Sue,
In September 2024 Bronchiectasis and Mac were diagnosed. In January, airway clearance with Albuteral and saline were nebulized and continued twice a day. I doctor in Mason City Iowa and Mayo Clinic in Rochester. I was invited to Mayo Connect when an appointment was made in Mayo.
I don't mind asking questions. Reading other's postings and giving support has been of great comfort and education about this complicated and, sometimes, stressful disease.
I am currently listening to the latest conference. Every session is informative, interesting and encouraging.
Thank you for asking,
Ann P
Hi Sue,
In September 2024 Bronchiectasis and Mac were diagnosed. In January, airway clearance with Albuteral and saline were nebulized and continued twice a day. I doctor in Mason City Iowa and Mayo Clinic in Rochester. I was invited to Mayo Connect when an appointment was made in Mayo.
I don't mind asking questions. Reading other's postings and giving support has been of great comfort and education about this complicated and, sometimes, stressful disease.
I am currently listening to the latest conference. Every session is informative, interesting and encouraging.
Thank you for asking,
Ann P
I purchased disposable cups for albuterol and 7% saline. I used one disposable cup for 2 treatments per day. I made sure the cup was covered between use. Threw the cup away after 2 treatments. Not very expensive but eliminated the need to sterilize. Cruise was a 10 day trip and ship provided distilled water as needed.
Have fun and relax.
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1 ReactionGreat news from your pulmonologists, Sue, and so encouraging for the rest of us!
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1 ReactionHere is a good video describing airway clearance techniques, including huff coughing and using the Aerobika. Each person needs to experiment to find what works for them.
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3 ReactionsThank you, Sue! I’ll watch the video.
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1 ReactionGood job asking questions. I am learning learning learning. Trying not to be anxious and believe that this will become an old habit. I am so grateful for all the great info here
Can you share a little about your diagnosis and how you found us here at Mayo Connect?
I would like to welcome you to ask your own questions of our helpful members, we're here to help you on this journey.
Have you been diagnosed with MAC, Bronchiectasis, or both?
Thank you for you gentle reminders that for most of the population AC means "air conditioning " and not "airway clearance ". You're right - many of our routines become old habit and we speak to each other in acronyms - kind of like the military. We'll try to do better!
Sue
Hi Sue,
In September 2024 Bronchiectasis and Mac were diagnosed. In January, airway clearance with Albuteral and saline were nebulized and continued twice a day. I doctor in Mason City Iowa and Mayo Clinic in Rochester. I was invited to Mayo Connect when an appointment was made in Mayo.
I don't mind asking questions. Reading other's postings and giving support has been of great comfort and education about this complicated and, sometimes, stressful disease.
I am currently listening to the latest conference. Every session is informative, interesting and encouraging.
Thank you for asking,
Ann P
PS I have a video appt with Brad this week!!
Does anyone have tips for cleaning and sterilizing their nebulizer on a cruise ship? Any information or tips would be appreciated.
I purchased disposable cups for albuterol and 7% saline. I used one disposable cup for 2 treatments per day. I made sure the cup was covered between use. Threw the cup away after 2 treatments. Not very expensive but eliminated the need to sterilize. Cruise was a 10 day trip and ship provided distilled water as needed.
Have fun and relax.
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Hug
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