I think you have answered your own question and for me I believe you are wise with "continuing to do twice daily AWC and taking many precautions in order to avoid infections and exacerbations vs. having the surgery to feel more confident that I have done what I can to minimize future risks while still doing AWC, etc.."
My greatest fear is the possibility of having to go into the hospital and coming out with a worse infection. I personally want to stay away from hospitals, nursing homes, rehabs, etc. and will do all and anything to avoid them. Hard decisions we all have to make but we all know ourselves best, hopefully.
You will know if it is right, the surgery, with more time, with more time devoted to air way clearance and our at home therapy etc. and as well deep honest thought we have to give to ourselves. I would imagine that after such a surgery one still has all the possibilities one has with all lobes, you would just have less areas????
Barbara
Barbara, yes, I believe that I have answered my question.
I also have a great fear of being hospitalized and coming home with infections that I did not have when admitted. It is not just the fact that hospitals are breeding grounds, but also that the most basic infection control measures are not consistently and properly employed. Instead, they rely on antibiotics.
We can do what we can and need to at home, but we cannot control our environment outside of home.
I think that the reason why some of us have localized areas with more severe BE is because that is where it probably originated and existed the longest, and without diagnosis. With twice daily airway clearance and lung hygiene and being monitored monthly through sputum samples, an infection is less likely to reach the stage and do the damage as the initial one(s) did. My thinking with the surgery was to eliminate the worst area that might serve as a reservoir for future infections. Yes, there will still be other areas with BE, but exacerbations and their severity might be decreased with that area of concentrated damage gone.
There are also patients and doctors who believe that if you manage to clear the infection, you should not have surgery.
So many tough decisions. As we get older, surgery becomes more difficult on the body, and recovery is harder and longer. On the other hand, if we are able to tolerate meds, we are able to do well and have fewer exacerbations.
I think the decisive factor is the proper and regular airway clearance and taking precautions. This, along with a healthy and adequate diet and daily exercise are our defense weapons.