First ID appt today after lung resection

You have a unique case here. Most of us fight Mac with antibiotics and act's. The best we can provide is similar experiences but you have not provided details. Is Mac eradicated? Do you have breathing problems. Short of breath or fatigued? What treatment are the recommending?

I too was looking at the pointy end of a scalpel last year for a lobectomy, opted out based on additional opinions. I had a failed resection 4 1/2 years ago that was followed with 28 months of the big 3 along with Amikacin iv and later Arikayce.

At my appt, ID believes they “got the mothership “ and only very small nodules remain. I have no symptoms and never have. If Pulmonologist agrees, I will do saline neb and airway clearing with CT scans every 6 months to monitor.

She also said I was very lucky because if I had done biopsy first, they would have referred me for drug treatment- but I may have dodged that by having it removed with wide clear margins. Surgery was minimally invasive and an easy recovery- certainly easier than the Big3!

How are you now Rick?

No more MAC but a fungal infection in my permanent cavity and I've been on voriconazole for 13 months now. Got a nasty case of covid in Oct. Lung capacity has been a consistent 40% for 5 years now. I'm still active but at a very slow pace.

What size was your nodule? I had 1.1x1.5 cm that the sent me in for a pet scan 3 weeks later and it measured under 5mm. I got a full body scan and try found nothing.

Sorry you’re still struggling with infection of any type. Glad to hear your nodule shrunk considerably! my nodule was 2.9 cm x 2.5 cm. They took out the top portion of my upper right lobe and I have a titanium zipper in there now.

At least the rest of my body is very sound. My ID Dr at NJH wanted me to take 6 weeks of Amikacin IV before the RUL removal. That was a one of the sticky points as I do not tolerate Amikacin well not do I currently have MAC. I have a 2x3 cm cavity that has now trapped aspergillus. I am glad your surgery was successful. Take Care, Rick

I have never heard of a titanium zipper ,where is it located. I had the upper two lobes removed out of my right lung. They went in though my back. About a 7 inch scar it feels like a zipper or something with wire in it. Of course it's not but I said it feels like a zipper or something.

I was at Northwestern in Chicago and they have a top notch lung center. They use tiny titanium internal staples that link together and look like a zipper on x-ray so they call them a zipper rather than staples.

Rick,careful with that fungus that is what I had. I waited way to long before I saw any Doctor. It was three years ago yesterday that I had the double lobectomy. Thank you for the hug. Jeff