Surgery for MAC

By the time I got my PET, the nodule in question dramatically shrunk in size (over 3 weeks) but the lymph nodes showed an uptake. Months later I had a SuperDimension bronchoscopy that confirmed it was aspergillus. I guess you never know what these test will show?

By the time I got my PET, the nodule in question dramatically shrunk in size (over 3 weeks) but the lymph nodes showed an uptake. Months later I had a SuperDimension bronchoscopy that confirmed it was aspergillus. I guess you never know what these test will show?

I went to Europe 6/23. Came home with RSV & Aspergillus. Hospitalized 7 days. Took the med for Aspergillus 42 days. Was sent to a pulmonologist to see if lung was clear. Sent for PET, possible tumor. Opted for Mayo in Jax. I’ve been going there for annual checkups since Mayo diagnosed bronchiestasis. I don’t have it as bad as many people do. Manage it with mucinex. Had biopsy 10/23. 4 lymph nodes clear, but sample tested for typical neuroendocrine carcinoid. Very very slow growing. Robotic surgery 01/10/24. Sent home the next day. Follow up was told the suspect tumor was not a tumor, it was a granuloma that lite up in the PET. There were a few tiny carcinoid tumors near it. Only lost about 10% of lung. No sign of Aspergillus hanging on. Told not to worry about the little tumors, come back in a year for checkup. I’m 77, walk an indoor track at the Y, do a few machines. Finally hired someone to take care of my flowerbeds to avoid Aspergillus. I’m not going on anymore international flights, because 2 trips to Europe came home with miserable lung infections.
All my life when I would get ill, no dr ever said bronchiectasis. So many PA’s, NP’s, & some GP’s never heard or considered it.
I’m so grateful I went to Mayo.

I went to Europe 6/23. Came home with RSV & Aspergillus. Hospitalized 7 days. Took the med for Aspergillus 42 days. Was sent to a pulmonologist to see if lung was clear. Sent for PET, possible tumor. Opted for Mayo in Jax. I’ve been going there for annual checkups since Mayo diagnosed bronchiestasis. I don’t have it as bad as many people do. Manage it with mucinex. Had biopsy 10/23. 4 lymph nodes clear, but sample tested for typical neuroendocrine carcinoid. Very very slow growing. Robotic surgery 01/10/24. Sent home the next day. Follow up was told the suspect tumor was not a tumor, it was a granuloma that lite up in the PET. There were a few tiny carcinoid tumors near it. Only lost about 10% of lung. No sign of Aspergillus hanging on. Told not to worry about the little tumors, come back in a year for checkup. I’m 77, walk an indoor track at the Y, do a few machines. Finally hired someone to take care of my flowerbeds to avoid Aspergillus. I’m not going on anymore international flights, because 2 trips to Europe came home with miserable lung infections.
All my life when I would get ill, no dr ever said bronchiectasis. So many PA’s, NP’s, & some GP’s never heard or considered it.
I’m so grateful I went to Mayo.

Thank you I am thinking of visiting France and Italy this summer. So, I need to be careful. I hope you are feeling a lot better. May I know what was robotic surgery like? Was it VAT? My pulmonologist told me that down the road, we might need to consider due to chronic infections, and mucus production. I'm nervous though. I'm 53. My bronchiectasis started out as mild but now between mild and moderate most on my right middle lobe. Due to chronic infection, I produce yellow/green mucus every day.

Robotic. I think studies show recovery is easier and less complications. If I ever need it again, I won’t be worried. Even at age 77, I went home the next day.
The surgeon’s nurse said everyone is very surprised how easy it is.
I try to be very careful about handwashing, touching my face, use Clorox wipes to clean my armrests & tray table. I flew to Portugal once which was about 8 hrs. Flight from Venice about 11 hrs. Flight attendants are handling your drinks and food for hundreds of people. It’s too much. I know a few people who go on transatlantic cruises to get there. Cunard offers round trips.
The local pulmonologist and at Mayo have both told me it’s difficult to avoid. When I was younger I did ok, but not now. If you do go, I highly recommend asking your dr to give you the antibiotics, have a travel nebulizer. A Mayo dr told me in 2012 that the minute I felt the mucus to start Mucinex. I never travel without it. Ask your dr about taking that when traveling.
I had a hotel call a dr for me in Venice. Sadly he gave me antibiotics and couldn’t run tests. We were three days before flying home. Soon as I arrived went to ER. The antibiotics were useless because I had viral pneumonia and immune system was compromised with Aspergillus was in both lungs. That is nasty stuff.
For sure, but travel insurance! On my flight home from Portugal I upgraded to first class so I could lay down. My travel insurance covered it.

I had surgery at Mayo Jacksonville. I’m not particularly brave, but strongly believe they provide great care. I think believing your caregivers are the best and them demonstrating it makes all the difference. Every person I’ve ever encountered is so kind, thoughtful and reassuring. When going to surgery anesthesiologists, nurses, surgeon assistants, all explain each step until you are unconscious and next thing you know it’s done. Next comes the lovely caring nurses & aides, lol, you even order your meals from a menu anytime of day by phone and they tell you what time it will be delivered.

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.