Surgery post meds in BE area to lessen infections

I have the same doubts. In my case the parts to be removed, however, would be two: the Lingula and the middle lobe. I have read a lot about this and unfortunately surgery does not guarantee that there are no recurrence, indeed the recurrence rate remains high, especially if other lesions /bronchiectasis remain. In addition, the risks of surgery are high, mortality is 1% as the complications rate (fistulas, pneumothorax, infections) and I would not like to find myself managing even greater problems than I have now. The prospect of solving the disease was very tempting but I fear it is not a way to go, at least in my case

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.

Mary80, I feel the same way. It's been 2 years since I last talked to a surgeon.

@formergardener I am so sorry for this dilemma. BE is a disease that affects every side of life. As blm007 and Mary80 said, if surgery is a cure, lets do it. But it is not. With BE in other lobes, there is still a chance for reinfection. Therefore surgery is not a best option, just a temporary option. Chronic disease is chronic disease, self care is also safer than invasive procedure, as FACE BOOK Lung Matters always insists. I hope awc can do a better job than surgery for BE cases. It probably can. I hope you the best!

Hi, I had robotic surgery to remove my right middle lobe in January of last year. At the time I was MAC negative for 7 mos but still on the meds. Like you, I also had diffuse BE but worse in my right middle lobe. My doctor explained that that lobe was basically not functioning anymore and was acting as a repository for infection. I had the surgery at the University of Colorado in Denver. After 3 days I was able to leave the hospital. No nosocomial infection; the staff was excellent and knew all about MAC, as they work closely with NJH. Now my CT looks better all around and my PFT's are the best they've ever been. I finished up the meds 6 months later and have been MAC negative ever since.
Good luck with your decision.

You are echoing my own reservations. Thank you so much for the helpful input. At least I can try AWC for some time to see how I do off of meds. It is hard to risk it after being so long on meds - I do not want to do them again for many years!

Thank you for the helpful comment. I spoke with another woman recently who had the same experience with her right middle lobe and had the surgery done in Tyler. Her experience was also good and uneventful. She, too, had a right middle lobe that was not really serving her anymore and is feeling well after having it removed this January.

I am so glad that your outcome was so positive and that things are already looking better. Best wishes for continued improved health!