Anyone have a Lobectomy for MAC?

I have not, however, there are people here who have and I hope they chime in.

Have you viewed this video by Dr. Mitchell? It might be helpful in making your decision and might help you feel a little better about the surgical option.

I haven't had one either, but I do recall reading a post on this site, where the individual was very happy with the outcome. In this particular case, lung function and overall health improved. I don't recall if he/she cleared the infection. I had asked my NJH doctor if it was an option for me and her response was that she considered it but felt too much would be removed. But then I don't have cavities at this point, I was more concerned with an area that has significant BE damage and prone to infection. So, I'm just continuing with ACT twice per day. Good luck! Kathy

I had a right middle lobectomy last year because of advanced bronchiectasis in that lobe. I can’t honestly say that it improved how I feel but I was feeling pretty okay even before the surgery. It took me about three months to fully recover. It wasn’t curative , as I have been reinfected with MAC and still have bronchiectasis elsewhere in my lungs, but bronchiectasis a life-long challenge. All that said, if I had isolated cavities in one lobe and a doctor I trusted advised surgery, I would do it. Good luck with your decision.

I had a robotic resection of upper right lobe to remove a mass that looked like cancer about 1 1/2 yrs ago- turned out to be a large mass of MAI infection. I was out walking after about a week. I do not have bronchiectasis and a follow up culture a year after surgery was negative. I continue to do 7% saline 3-4 times a week and daily airway clearance. I’ve made a number of lifestyle changes to manage GERD and strengthen my immune system. No regrets on the surgery!

Thanks so much for the encouraging update. I live alone and will have my sister here for 2 weeks after surgery. Wondering if I’ll be able to do my daily chores (cooking, dishes, grocery shopping ) after that. Or if I should plan on getting more help. I am 75, but in relatively good health besides hte MAC. How long was your recovery? And when you talk about strengthening your immune system, did you do this through diet? Thank you.

No, but my BE specialist suggested that I meet with a thoracic surgeon to see if I'm a good candidate for surgery, specifically removal of upper parts of my lungs. The middle parts and lower parts are in better shape. Because I'm chronically underweight and other factors including swallowing issues and weakness related to Parkinson's, etc, i might no be an ideal candidate. Additionally I live on my own, so there is no one to provide post surgery assistance. Best of luck to you.

I went through treatment for MAC. I did a clinica trial for six months on daily Clofazimine. Then I was switched to the 2 vs 3 trial, which really brought my infection down quickly in just two months. After five months, since I still had colonies, my doctor added Arikayce. In about six weeks, I was clear. I remained clear for 18 months, as my doctor advised.

When I was diagnosed, my smear was +4 and culture +3. I had bronchiectasis in all lobes, but the majority was in both the superior and inferior linguila.

My doctor advised me that the linguila was the real focus of infection and referred me to a surgeon in Tyler, whom she and her colleagues work very closely with. He told me that the linguila was not serving me in its condition and that, if it remained, I would soon be reinfected after ending treatment.

He has close ties with the doctors at UTHSC in Tyler and knows his stuff. Outstanding doctor. When he removed the linguila, the pathology report showed casseating granulomatous changes. Bad stuff.

The good part is that no MAC was found in the tissue cultures, even after 8 weeks. I stayed on the meds for three more months, just in case.

The linguila is more than that tiny looking projection that most images show. It is a decent size, if you can locate an image of it by searching. So, it was not a tiny surgery, although it is smaller than a full lung lobe.

I had a VATS surgery. I went into the hospital the afternoon before, had surgery the next morning, and was there for three days, released the morning of the fourth day.

They provide you with pain meds and also a local nerve block. Surgery is no picnic, but the only area that was really sore for me was the incision near the axilla, where the tissue was pulled out. I had that incision, which was a few inches, another just under the breast, where the drainage tube was, and one in my back, almost laterally.

The first week was hard. After that, I got better quickly, and after week three, I felt great. Actually, less than a week after, I went grocery shopping with my husband, but he pushed the cart.

I had a little soreness once in a while, but it all resolved. I had no complications. I continue doing my airway clearance e twice a day. Prior to the surgery, my bronchiectasis was classified as moderate. With the most diseased portion removed, it is now classified as mild.

My chances of remaining clear now are excellent, as long as I continue my airway clearance and take standard precautions. I turned 70 yrs old recently. My surgeon was Dr. Caccitolo in Tyler, and he is on the same skill level as the surgeon at NJH. He knows his stuff and is a very compassionate surgeon.

I have no regrets about my surgery whatsoever. In fact, I truly believe that it prevented me from forever being on meds because of that area that would continue to provide a breeding ground, with the airways having so many books and crannies for MAC to hide. It also gave me renewed hope. For me, I feel that it gave me my life back.

Surgery may not be for everyone, but if you have an area that is particularly bad and is serving as a reservoir of infection, it might be worth consulting about removing it.

This is just my personal experience, but it was a very positive one. I will continue to do airway clearance and use precautions for the rest of my life, but it is better than the meds!! I have my energy and stamina back and feel better than ever.

I hope that this can help some others who are unsure about the prospect of surgery.