Have you had a wedge resection?

@softballqueen - Wow, 4 times in how many years? Does the infection clear each time with treatment? Do you have cavities or other anomalies in your lung that the doctor thinks is harboring the infection? Do you do daily airway clearance, and use 7% saline?
Sorry for so many questions, but this is a pretty big step unless something unusual is happening.
Are you getting your care from one of the Bronchiectasis centers of excellence, or have you been seen at one?

I believe @visions63 is also scheduled for this surgery in the near future. Maybe the two of you can compare notes.

@sueinmn It was 4 times in 10 years. It goes away for about a year then comes back. The first recurrence I spent 10 days at National Jewish in Denver and they worked with my local doc. I have localized bronchiectasis in LL lobe which sets up a breeding ground for MAC. I do daily airway clearance using 7% saline and a Hillrom vibrating vest. I don't have cavities just some stable nodules. This time my Stanford doc added inhaled arikayce to my normal 3 standard medications. I have just passed a year with negative monthly cultures so will be stopping soon. At 72, I'm just concerned about the risks they explained could happen, Afib being a big one because I had an ablation in 2013 that resolved Afib that I had for 5 years. I'll try & connect with @vision63. Thank you.

@softballqueen I have not had a wedge resection, but within two weeks of starting treatment for cavitary MAC I went into AFib. I of course was concerned there was a connection to the MAC drugs as the timing was hard to ignore. I was told having lung disease is itself a risk factor for AFib, and my going into AFib had nothing to do with the MAC medication. I remain skeptical but all to say, you may want to get a better sense of your risks for AFib because based on what I have been told, for me, the AFib risk with the wedge resection would be hard to weigh given my overall risk. I do have quite a bit of bronchiectasis (in addition to cavity disease) and it was hard for me to decide to treat in the first place because it seems unlikely I will stay clear of MAC for any length of time. Time will tell. I have asked if I am a surgical candidate and have been told no, because my disease is so wide spread. So there is an upside that your disease is limited enough they think a wedge resection could be beneficial for you. Dr. Mitchell in Denver is suppose to be the best for such surgeries. I myself would be VERY CAREFUL about choosing a surgeon. They must have the expertise this type of surgery requires due to the chronic infection, NOT just your average thoracic surgeon. One thing I would add is that Arikayce seems to provide, for some, more durability in terms of staying clear of MAC. Since no one is testing clinically whether a positive sputum is old infection or new, it’s hard to know if you are just not completely knocking the MAC out or if you are truly getting new infections. Since Arikayce was only introduced for you this last round of treatment, it seems there is a question as to whether the Arikayce could change your trajectory. Of course, to test that you would need to wait another year, risk another round of treatment, be that much older for any surgery, etc. This disease brings a lot of tough decisions. Hopefully those who have gone through the procedure will share their pros and cons. Good luck!

Thank you for your very informative response. The Thoracic surgeon at Stanford did say that although she does a lot of these wedge resections only a handful of times a year are they for bronchiectasis. I had not thought about that making a difference. I am going to wait until at least the end of the year since my 46 year old daughter was just diagnosed with Triple Negative breast cancer and we will need to get through that first. Again thanks for the reply.

@sueinmn Yes the infection does clear each time as confirmed with bronchoscopy. I do not have cavities just bronchiectasis in my LL lobe. I do daily airway clearance with 7% saline and a vest as well as aerolized Arikayce. I spent 2 weeks at National Jewish in Denver after my 2nd recurrence in 2019 and am now managed through Stanford. I will reach out to @vision63. Thank you.

@softballqueen I just had a wedge resection this past October to remove an area with a cavity they believe contained a high bacterial load of MAC. The immediate couple days following surgery were spent in the hospital and I was able go home by the second day, once the chest tube was able to be removed. No complications since, and recovery was fairly easy - I can’t say I even notice a difference as far as vital lung capacity goes. My surgeon took a photo of the removed section of lung, which looked pretty necrotic, so not sure how well that area of lung was even working. I’m currently scheduled for a repeat bronchoscopy (how I was originally diagnosed last January) for next week to confirm whether/how much of the infection is still present since I am unable to produce a sufficient sputum specimen. I will have been taking azithromycin, ethambutol, clofazimine, and Arikayce daily for about a year by the time that culture comes back. My pulm is convinced the infection is gone, but I’m not willing to stop treatment until I have a negative culture.

The decision to move forward with surgery was an easy one for me, but I am currently 30 yrs old and would probably hesitate at 72. I can’t say I’ve noticed an improvement in my symptoms (mainly congestion), but they were mild to begin with and I’m not sure how much of my current congestion could be attributed to the Arikayce.

Best of luck!
Kate

Knully. Where was the surgery done? At NJH or at you local hospital? Thank you

@knully Thank you, yours is the first response I've had and I appreciate hearing how the surgery/recovery was and how you're feeling now. Good luck with the bronchoscopy and I would be interested to hear if your infection is gone.

@lilianna it was done at Penn by Dr. Singhal

@knully
I am interested in how you have done with the clofazimine. My pulmonologist wants to add this to my treatment but I’m very concerned about the side effects, especially those related to changes in skin color. What can you share?

Bell