What’s your routine to deal with BE

Posted by shayshay123 @shayshay123, Jun 24 7:07pm

My mum has bronchiectasis and has suffered from it for over 10 years now. It’s at the point where she has also been diagnosed with fibrosis. Her coughing is out of control and she has increased breathlessness. I wanted to start a thread here to ask people what are your current coping mechanisms and is there anything that you do by way of your daily regiment that you think has helped you? I would also wonder if anyone has also gone through the same coughing episodes and breathlessness at any point in their bronchiectasis journey.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

trebligaf1 | @trebligaf1 | Jun 25 8:17am

I nebulize and use vest therapy. Last year I started a biologic treatment. It is FASENRA, an automatic pen injection, every 8 weeks, along with ARFOMETORAL, a nebulizer treatment. It made a huge difference. I do not need to do my vest or my other nebulizer treatments every day.

ingrid1947 | @ingrid1947 | Jun 25 9:31am

I exercise daily which my pulmonologist says is a necessity.
I nebulize twice daily with prescription saline solution, and afterwards once a day my husband does chest percussion and the other time I use a flutter valve. Ask her Dr. to send her to PT for ways to clear the mucus daily which is another necessity.

scoop | @scoop | Jun 25 10:26am

Everyone with BE seems to have a different experience. What's helped me is learning as much as I can about the disease and keeping up with new research, treatments, and recommendations from the medical community.

Over time, I've watched a lot of webinars, read studies, followed treatment developments, and learned a great deal from the people on this forum. There's a wealth of information here. I've taken all of that and developed a personal routine and treatment plan that works for me.

If that approach appeals to you, I'd recommend spending some time with this thread. I suspect the few hours you invest will pay off in helping your mom.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

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