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Replies to "Hi Sue, I usually sit on the floor with my back against the couch. Today I..."
MAC & Bronchiectasis | Last Active: Jan 2 6:00pm | Replies (7)
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Hi Sue, I usually sit on the floor with my back against the couch.
Today I did airway clearance with Aerobika , no saline. Still had shortness of breath afterwards. I see Dr McShane next week.
This NTM and Bronchiectasis is such a battle and so much fear attached to it.
Replies to "Hi Sue, I usually sit on the floor with my back against the couch. Today I..."
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Renee, can you explain why you are fearful? I'm a "little old lady" and while I recall being scared when first diagnosed, the more I learned, the more I was able to accept that Bronchiectasis and MAC were just a part of this journey called LIFE.
I knew that the MAC treatment was going to be tough- and it was. But I get through with the help of this group, and am now 5 years antibiotic-free.
Then there were all the lifestyle changes
- Airway clearance, how and how much and later 7%saline
- How dangerous is the water - test, boil, use bottled, eat ice or not?
- Mask or not (this was pre-Covid), to isolate or not, are vaccines good or bad...
Here is what helped me turn the corner (5 years ago) - I was with the ID doc, feeling horribly sick from daily antibiotics, weighing less than 100 lbs and in tears. He sat me down and recommended stopping the meds and "getting my life back."
His explanation - the antibiotics have done all they can for you, your CT looks better, you can continue airway clearance with saline to keep the germs knocked down.
Then he said this MAGIC PHRASE "Bronchiectasis is a disease you will live with, not die from. You need to figure out how to do it the best way for you."
We went on to discuss taking reasonable precautions vs trying to stay 100% safe (there is no such thing), adjusting over time based on my health, paying attention to the latest research, avoiding extreme measures, and working with my pulmonologist.
My adjustments over time have included ignoring the extreme advice, treating my asthma first, as it is more severe than my BE, reducing saline nebs as I got healthier, substituting exercise for other airway clearance techniques if I when healthy, periodic monitoring with CT scans (every 2 years while stable) and sputum cultures (once a year if negative) and a "rapid response" plan for exacerbation.
Continued precautions include ignoring extreme advice, using .2 micron filtered or spring water, no indoor pool or spas (sad because my grands love them), washing equipment daily and sterilizing weekly, staying away from sick people, precautions while gardening, vaccination and other preventive medicine and paying VERY close attention to my lungs and health.
What can I help you do to overcome your feelings of fear?