Surgery for MAC
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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Apparently!
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.
As I turn 65 and retiring finally, I've crossed out all long travel destinations by airline or boat off my bucket list. I got nailed with a bad case of covid my last flight. I guess I can survive between Colorado and Gulf Shores.
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.
Thank you for the tips on travelling. I will take note of that. Did you have the surgery at Mayo? I wish I was half brave as you. You are so brave, and all medical procedures make me nervous. I even do not like doing pulmonary function test.
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.
Thank you Jessicame. So glad you received a great care at Mayo! Thank you and stay warm!