Connect
How much time do you spend managing bronchiectasis?
I conservatively estimate I spend 2 hours a day doing lung protocol stuff for my bronchiectasis. That includes at least 2 long saline nebulizer/Aerobika sessions, 2 nasal lavages, and rinsing, boiling, sanitizing, prepping (such as boiling, cooling, and storing distilled water for nasal lavage), and other maintenance.
I have — or had — 16 waking hours in a day. With all the lung stuff I now have 14. My day has been reduced by 12.5%. It’s worth it, to be able to breathe and reduce respiratory infections, but it has a real impact.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
I spend 1.5 hrs a day on airway clearance. I also have recurring bloodwork, sputum induction, eye exams, hearing tests and visits with the infectious disease doctor who is managing my MAC drug therapy. I'm afraid of getting prescriptions delivered so I go to the pharmacy every month. And I've spent about a month trying to get a SmartVest, acquire clofazimine, and fill a prescription for 10% saline so I don't have to go to the sputum induction lab each month. These three things have not been resolved yet so I'm continuing to spend energy on them. It's a lot and I've been very angry because I haven't produced adequate sputum samples to tell if any of this is yielding a return.
-
Like -
Helpful -
Hug
1 ReactionDo you know where your bronchiectasis is in your lungs? This might help you target the most impacted lobe with postural drainage.
Thanks for your suggestion. The most impacted part is the lingula. I used to lie on my right side and do deep breathing but it didn't seem to bring up more sputum.
I posted this postural drainage document earlier on another discussion:
https://connect.mayoclinic.org/discussion/laying-on-side/
-
Like -
Helpful -
Hug
1 Reaction