Anyone have a Lobectomy for MAC?

Posted by bettyarn @bettyarn, Jul 13 8:33am

I’ve been taking antibiotics for 7 months with no results. (Azthromycin, Rifampin and Linzolid plus Arikace.). I have two large cavities in the right lower lobe . Both my ID doc and Pulmonologist do not feel the antibiotics are going to work because of the large cavities. They referred me to surgeon who can remove 90% of the MAC through a lobectomy of the right lower lobe. Has anyone gone through this procedure? I am a 75 yr female and am tempted to do this to get off this terrible treatment. I would likely still have to take antibiotics for 6 months after surgery to get rid of the remaining MAC. The surgery would be done robotically but it’s still a long recovery.

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kpger | @kpger | Jul 23 4:50pm

I was diagnosed in 1996 (age 38) with Bronchiectasis and had a right middle lobectomy a few weeks after that. A couple of years after that I got my first (of several) diagnosis of MAC. At one point my upper right lobe had multiple cavities.
It's been a long road, but I'm now almost 68 and still kicking.
The surgery went well and the only signs I have are the thoracotomy scar and the many clips visible in xrays still holding it all together. The last sputum culture for MAC was probably in 2018 or 19. It was the first negative culture I'd ever had. I can't tell you how many months/years I was treated up to that point. My doctors basically threw their hands up and referred me to someone locally that specialized in MAC infections. The ONLY thing he changed from day one was the way I was taking the 3 med cocktail. I'd been instructed to take the pills 3 x daily. He said to take them all at once. (I thought he was nuts) Only one time each day. So I did. And here we are. Word of advice - keep a journal. Appointments, hospitalizations, meds, dates of everything! In my case, i was finally diagnosed with an immune deficiency and have been on IVIG every 28 days for the past 5 years. If antibiotics alone aren't helping and you haven't been tested you may want to talk to your doctor about it.
There is so much more I can say, but your question was about surgery. It worked for me. I wasn't diagnosed with MAC so that played no part in the need for surgery. The middle lobe, if memory serves, is smaller that the upper and lower. Not sure that has any significance, but you can always get a second opinion (if you haven't already had the surgery).
I wish you well. Please let us now how you are.