Mac with Bronchiectasis and collapsed middle lobe

Posted by sharisse68 @sharisse68, Nov 25, 2022

I was recently confirmed to have Mac lung disease and bronchiectasis in the middle lobe of my right lung which is also collapsed. I have done the percussion vest and the nebulizer with no sputum results. My infectious disease doctor is referring me to National Jewish Health in Denver, Colorado in hopes that they will be able to offer some advice or treatment as to doing some sort of medication or, my preferred choice is removing that collapsed lobe. The collapsed lobe from what I have been told is nothing but a harboring place for recurrent infections. So if I did the treatment and possibly killed the infection, it is very very possible and highly likely that the infection will come back. I am in my late 60s and don't want to wait several years for that to happen and then have to do the surgery. Does anyone have any experience or input on this?

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sharisse68 | @sharisse68 | Dec 3, 2022

In reply to @med08 "If you don’t hear from NJH. Definitely call to f/u. They don’t always. Good luck. I..." + (show)

Is FU Florida University?

med08 | @med08 | Dec 3, 2022

In reply to @sharisse68 "Is FU Florida University?" + (show)

I’m so sorry. F/U = Follow up. I just got an appointment. It takes a bit and you get scheduled for intake interview After that They said call in 2 weeks if I don’t here from them. I called and still they didn’t have appointment. Than after a month Infectious disease intake person called and said they needed my records which were sent. I immediately faxed everything and she then said she is so sorry medical records did have them. She said I would be put on stat because I had been waiting for so long. Then nothing for a week or two. I called again and they were like oh yeah you are ready to be scheduled. You have to be very proactive! Take names and follow up numbers. Don’t be shy about calling them. Everyone I spoke to is very nice but end of year is very busy for them, apparently.

sharisse68 | @sharisse68 | Dec 3, 2022

In reply to @med08 "I’m so sorry. F/U = Follow up. I just got an appointment. It takes a bit..." + (show)

Thank you so much for the follow-up. I will definitely do that and stay on top of it. I also have a very proactive ID that will also be persistent, but I will also push him.

sharisse68 | @sharisse68 | Dec 15, 2022

In reply to @med08 "If you don’t hear from NJH. Definitely call to f/u. They don’t always. Good luck. I..." + (show)

Okay, we did hear from NTAH and they are in agreement with the surgery. However, we are also looking into University of Oregon who also specializes in this and is a much closer location for us.