Airway clearance and how I feel throughout the day

Thank you for your reply. That makes sense. I really appreciate it.
Can you tell me what your airway clearance routine is?
Since I have it in three loaves, it is very concerning to me. It progressed from one to three in less than a year.
Does anyone in this forum know anyone who has actually died from this?
Of course we all hope this will never happen, but I’m wondering about the natural progression of the disease treated or untreated. Thank you so much for your replies Jill.

My experience is that I was working too hard with the inhaling, exhaling, and huff coughing and felt exhausted also.
I was not relaxing and doing it correctly. It is hard to teach in words, however, be gentle with the inhaling, exhaling and huff coughing.
I bring up mucus all day long it is so time consuming, if nothing else, and there is plenty of nothing else for us with BE.
Are you sleeping on a wedge at night? Hope so, that is very important.
I wake up at night to walk down the hall to release my bladder and then have to clear mucus before trying to go back to sleep.
Mornings we do have much mucus having built up in the lungs at night.
I am doing my best to nebulize twice a day and many times I will do three times a day with the nebulizing of saline. The third helps with clearing just before bed.
I take it you are sending mucus, mucus plugs, specimens into the lab for testing for the infection and the degree of the infection, type of infection and the number of colonies. Some labs are limited in their ability to do get all that information.
We will probably not be able to clear fully, each time, all the mucus build up. That is my belief and understanding.......and if I am wrong I hope someone will respond to this belief and what they understand.
Barbara

Thanks so much for your reply. Every bit helps me stay connected and not feeling so isolated.
FYI, my Pulmo at Ucla doesn’t do regular sputum samples. He’s very attuned to the problem of over treating with too many antibiotics.
I have had two bronchoscopies and the last showed some Aspergillus, Mac and MSSA
However, I’ve been previously treated with so many antibiotics. He wants me to just concentrate on airway clearance and has reduced me to once a day. I hope that’s enough, especially since I have this in three lobes
I’m not sure, but I believe he said that these were just samples and had not necessarily formed to colonies yet. However, something has caused my be to progress from one lobe to three Especially after doing two surgeries which were supposed to alleviate The progressionand I’m wondering if anyone else has multi lobe or multifocal illness
Yes, the pneumonia I had for such a length. Eventually caused an and my upper right lobe became necrotic with cavitation.

I asked him how much of my lung was affected by a Beand he said 20%
He then said I have moderate BE .
Thanks for checking the time to read Jill

Hi Jill,
What I understand about the chances of dying from bronchiectasis from various comments here is that we are generally much, much more likely to die "with" the condition than die "of" the condition. Of course as we age we are likely to have other conditions too so the picture can be complicated. And BE needs to be well controlled by our daily airway clearance to minimize the risk of infection and the risk of progressive damage to the lungs. We don't have a statistical study of ourselves on this support group, but from what I can tell from those who post, there are some whose quality of life is severely impacted and many more who are leading a close -to- normal life by careful routine.
That's a long answer to a short question and I hope it can give you some ease of mind.

Thank you for your reply. That makes sense. I really appreciate it.
Can you tell me what your airway clearance routine is?
Since I have it in three loaves, it is very concerning to me. It progressed from one to three in less than a year.
Does anyone in this forum know anyone who has actually died from this?
Of course we all hope this will never happen, but I’m wondering about the natural progression of the disease treated or untreated. Thank you so much for your replies Jill.

Twice a day to keep the bugs away! Or at least lower their numbers. Other airway clearance options include acapella/aerobika, huff coughing, positional drainage, and active cycle breathing. For non-mild BE cases it's probably a good idea to say aggressive with airway clearance, in my opinion, a non-medical person. My docs have recently started using the word severe when referring to the BE and cavitary MAC, so I'm doing everything I can think of to prevent further damage. Peace and blessings to all.

You pose a good question, Scoop!
Same with me, mucus all day no mater what I do. Plus I have a Crazy Cough non- stop through out the day. Every 45 minutes on average and always bringing up mucus. My nose fills up as well. Tissues galore in every basket in the apartment. I take one puff of Albuterol.... wait a few minutes and neb with saline. I'm on a low dose right now. .09%. Then I use the Aerobika Device for 10 minutes then sanitize equipment and gargle with warm salt water. I don't do it a second time....because in the beginning, I felt the process made me cough more. Maybe I need to try it 2x p/d. I'm dealing with the tissues but can't tolerate the Constant Cough much longer, going on 6 months on and off. I need to work with a Respiratory Therapist to check me.
Frankie160

You pose a good question, Scoop!
Same with me, mucus all day no mater what I do. Plus I have a Crazy Cough non- stop through out the day. Every 45 minutes on average and always bringing up mucus. My nose fills up as well. Tissues galore in every basket in the apartment. I take one puff of Albuterol.... wait a few minutes and neb with saline. I'm on a low dose right now. .09%. Then I use the Aerobika Device for 10 minutes then sanitize equipment and gargle with warm salt water. I don't do it a second time....because in the beginning, I felt the process made me cough more. Maybe I need to try it 2x p/d. I'm dealing with the tissues but can't tolerate the Constant Cough much longer, going on 6 months on and off. I need to work with a Respiratory Therapist to check me.
Frankie160