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Surgery for MAC

Posted by jbud12 @jbud12, Jan 22, 2024

Hi, I was diagnosed with MAC 2 years ago. My pulmonologist sent me to have a biopsy of my lung ( when we were still trying to figure out was I had…). The surgeon did a lower left lobectomy and removed a 1/4 of my lung. My pulmonologist wasn’t happy about this. Turned out it was MAC. Has anyone ever had surgery for MAC? Did you still need antibiotics? Thank you

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scoop | @scoop | 2 days ago
In reply to @macsucks "My pulmonologist and surgeon are recommending surgery to cut out my MAC in the upper lobe..." + (show)
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My pulmonologist and surgeon are recommending surgery to cut out my MAC in the upper lobe of one lung.
Some history! I am a 76 year old male and I have been having lung scans for probably 10-12 years and they have always showed a mass in my left upper lobe. The scans never showed a change so there was no concern by the radiologist/doctors. 14 months ago I coughed up blood and was in the hospital four days on steroids, a scan and a sputum test. The latter test indicated MAC. Then a year ago, had a PET scan that lit up the affected area. Subsequently, I have had a needle biopsy and a down the throat into the lung biopsy. Neither showed cancer and both showed MAC. The spot has changed and grown in the last 14 months. In the meantime, I was put on the big three meds which I did not tolerate. I tried twice and both times had rapid weight loss. So, I have quit those with the doctors understanding/blessing.
They want me to have surgery to cut out the affected lung area assuming I can afford to lose that part of a lung. I have a comprehensive breathing test tomorrow that will determine that as my lungs are already compromised due to the emphysema.
I have provided the road I have been down for you folks and ask if you think I am a good candidate for the surgery assuming the breathing test is okay. If you have had this surgery, what was the length of the recovery and what I should expect? Surgeon said optimistically, 3-6 days in the hospital, tubes out of my chest and 30 day overall recovery. Yikes!

Any and all input is appreciated. Thanks.

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@macsucks
This video is a few years old but you might find it useful as you consider surgery for MAC.

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macsucks | @macsucks | 1 day ago
In reply to @scoop "@macsucks This video is a few years old but you might find it useful as you..." + (show)
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@macsucks
This video is a few years old but you might find it useful as you consider surgery for MAC.

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@scoop Thanks. Just finished the video. Very informative. I wrote down several more questions for the surgeon. I wonder if I should seek out a 1st in class surgeon/facility for this even though it might entail an airplane ride.

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Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @macsucks "@scoop Thanks. Just finished the video. Very informative. I wrote down several more questions for the..." + (show)
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@scoop Thanks. Just finished the video. Very informative. I wrote down several more questions for the surgeon. I wonder if I should seek out a 1st in class surgeon/facility for this even though it might entail an airplane ride.

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@macsucks Not scoop here, but one consideration would be when you would be allowed to fly after lung surgery. After a simple resection, it may be possible after 2 weeks. A lobectomy would require a month or longer.
Another is who does the after care? You would need to make arrangements with a local thoracic surgeon to do follow-ups. In my experience it is pretty difficult to find a surgeon to take over after someone else has operated.

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scoop | @scoop | 1 day ago
In reply to @macsucks "@scoop Thanks. Just finished the video. Very informative. I wrote down several more questions for the..." + (show)
Profile picture for macsucks @macsucks

@scoop Thanks. Just finished the video. Very informative. I wrote down several more questions for the surgeon. I wonder if I should seek out a 1st in class surgeon/facility for this even though it might entail an airplane ride.

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@macsucks
Although I cannot recall who, there have been people here on this site who had Dr Mitchell do their surgery in Colorado and had to travel to him. The important part, I think, of finding a surgeon is to find one who has done many many many of these surgeries. Like Sue said, there are a number of considerations, but personally, I would not rule out traveling to another state for the surgery for a top-notch surgeon. Drilling down into the surgeon’s CV and seeing where they trained can be useful as well.

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