Advanced BE and refractory MAC treatment questions.

I don't know if this helps but my pulmonologist who specializes in BE etc. would say that 94% oxygen saturation is quite ok for someone with BE etc. I am on oxygen all the time now and he said as long as it is at least 90% it is ok. I do not think that would cause the exhaustion as much as infection would?

Good to know. Thanks for the info. Talk to him next week.

Are you on treatment for the BE?
So far I’m just on MAC pills.

I wish I could answer your questions. I start Mac treatment in June. I’m getting all the testing done. Can you tell me what to expect for side effects by any chance?

The first two times I barely had any issues. A bit of an upset stomach and loose bowel movements for a few weeks. Then nothing.
This time they changed one med to rifambutin and having some back headaches and feel dizzy and crappy.
But my BE is significantly worse.
So might be that.
Hopefully you’ll will be like my first few times.

I usually have a 94% but lately, I've been asking MA to put monitor on my middle finger versus index, and I got a 95% on one visit, and the 2nd visit 96%. I never get a 96%, maybe it was just the monitor?

Do you regularly do airway clearance of some sort?

Hope the meds help!

No airway clearance at all. I see a lot of people do that on this site. I wonder if that’s the USA treatment as I haven’t seen a lot of it from people here I have talked to about BE and MAC.

I am sorry to hear about your difficulties and the repeated bouts of meds. BE plays such a strong role in the persistence of infection.

I had an area of varicose BE in my linguila. I had good results with drug therapy and converted to negative with all lobes affected by BE. However, all other areas were cylindrical BE, with only the linguila having varicose.

My doctor referred me to a skilled and experienced surgeon who works closely with a center of excellence. After seeing me and studying me, despite at the time having almost completed my full 18 months of being culture negative, he told me that, given the tortuous nature of the BE in that area and all the nooks and crannies where bugs collect, that once I was off of meds, it would not be long before I was again infected.

I decided on surgery to remove the linguila. He ended up removing both the upper and lower lingula portions. The pathology report showed cases eating granulomatous tissue and calcification. It was just destroyed, and the area on my CT that continue to show impaction of mucous on the lateral edge of the linguila revealed on the pathology report to be permeated with thick mucus through the parenchyma as well.

The surgery is not an easy one, but I am relieved to have completed it and am recovering very well with no complications. I will be 70 next month. My doctor wants me to stay on the meds an additional 3 months post surgery for protection, and I am doing that.

This may not be the solution for everyone, but if there are limited areas of particularly severe BE which contribute to repeated or constant infection, it might be a good idea to consult with a center of excellence and to be referred to a highly experienced surgeon in this area to see if you might be a candidate for consideration.

I was told that this area which was removed was serving no function and would continue to be a reservoir for future infections. I do not feel a decline in my lung function at all, and my O2 stats are always at least 98. In a few days, I will be four weeks post surgery day. I spent 3 days in the hospital.

Surgery is a frightening prospect. The final push for me, after putting off the consideration, was being told that, if I did not address it now, there would be little that he could do to help me. So for me personally, it was a good choice. For others, it may not be the best choice. The opinion of experts is really needed in order for you to feel confident and to have trust in your care providers’ advice.

I typed in “casseating” granulomatous, and my phone put in something different. So, this is what my report said.

It is highly recommended by BE specialists here in the USA to do nebulizing of hypertonic saline solution and air way clearance after the nebulizing. There are a few suggestions that can be found on the internet about the types of methods to do for airway clearance. Meaning helping yourself to clearing the mucus out of the lungs. Also a video by Dr. Pamela McShane has one on Air Way Clearance. I don't keep a list of sites but you can possibly find it on a thread here in the Mayo Connect by using the search site. The video talks about BE and airway clearance.
Barbara