New Diagnosis of MAC/MAI & I'm scared

@induh66 Hello, and welcome to our group. I am curious, if they know you have bronchiectasis and an infection, and are planning to put you on the antibiotics; then what is the purpose of the bronchioscope?

@laura34 Hi Laura. I was diagnosed in 2005 with mac and I declined the 3 drug regimen. I was put on a two week run of azithromycin and it knocked the infection down. I don't know if it went away because I was never tested again for it until I went to the Mayo Clinic in 2013. (That was negligent of my former pulmonologist, and I didn't know that I could have requested regular sputem testing) In 2013 I was put on two antibiotics. If you click on my picture here you can read about my treatment plan. My point is, is that a patient's treatment plan needs to be individualized. It is not a one treatment fits all. MAC disease in itself it difficult to treat effectively because it is constantly morphing and it's specie list is growing. Kind of like chasing the wind. Now, if you add to that a physician that is unfamiliar with treating this....and believe me, there are many that are (unfamiliar). It would really be helpful for you to go to the Discussion Board located on our group's main page. There is a list of topics there. It would serve you well to learn all that you can about mac. That way you will know what questions to ask your doctors and also you will be able to distinguish whether or not you are getting proper care. I too, want to extend my gratitude to you for your service. I cannot even imagine being in the throes of that middle east warfare.

@laura34 I wanted to add that I used to complain that my lungs burned all of time. My dr said there is no nerve endings in the lungs, therefore it wasn't them that was burning. The burning sensation turned out to be acid reflux. It was my esophagus and maybe part of my bronchial tree that burned from acid erosion. Once I treated that and made lifestyle changes; it went away. You having been exposed to burn pits may very well have damage from that. That was a great tip from Terri aka @tdrell about NJH having a special dept for service people.

Thank you so much for all your responses and you have definitely eased my anxiety going into this procedure. This is a case where this whole thing came out of the blue to me. Almost 3 years ago I had bilateral mastectomies for breast cancer and in 6-month followup my oncologist ordered an abdominal CT to make sure there was no pancreatic involvement (due to an ATM gene mutation). Good news..no pancreatic cancer; the bad news...bronchiectasis with significant mucus plugging, differential includes MAI infection. This was followed up with an abdominal MRI (for a liver lesion) and then a HRCT. These all confirmed the diagnosis radiographically. I suppose the bronch is for identification of the infection or maybe to definitely rule out lung cancer, though he said it was not. I am so glad I was directed to this site, as you all made me feel better about facing the procedure tomorrow. Again, thank you!

@windwalker That is great that you were able to control your acid reflux. I am curious at to what lifestyle changes you made for it to go away? I have been on omeprazole for years and would like to get off of it. I imagine I will have to give up my wine and chocolate for a start.

@Induh66 I'm Nan, not on here a whole lot but I do read everything and I wanted to let you know I had a bronchoscopy three years ago when I was first diagnosed with bronchiectasis and MAC and it was nothing. And I'm actually going in two days from now for another one and I know this sounds weird but I'm glad for it. I got the flu very bad last year and have now had a cough that resulted from it and has lasted a year so my doctor wants to go down there and take a look to see if he can find anything. I've been testing negative for MAC on the last two sputum tests but I think he wants to go a little deeper.

Once again, thank you all for the support with my anxiety issues about having my first bronchoscopy. The hospital staff was great. I was totally out for the whole procedure and don't remember a thing. Quite a bit of coughing in the evening, but nothing significant. Now... wait for the path report and the next step of my journey. Yes, this site does help.

@induh66 Hi. I am glad your procedure went alright. I didn't want to say anything until after your bronchoscopy. I had one done in 2005 by a sadistic doctor who did NOT give me the twilight sedation for mine. She only gave me 5 mg of valium (which did nothing). It was the most horrifying experience I have ever had, and vowed that I would rather die than have another bronchoscopy. She had two orderlies hold me down while she did the procedure. She jammed the scope down into my lungs with such a force that it hit the end of my lung with a thud. I thought I'd go through the roof! Plus, the tube going down into your bronchial tube filled the entire space so that I had the sensation of suffocating, that is the point where the orderlies had to pin me down. I did not know at that time that you should be put under for that procedure. I hate to say this, but I think she did not like white people and took it out on me. I say that because my gut feeling felt that when I first consulted with her. I should have listened to that feeling and gone somewhere else. So, just clarifying for anybody getting a bronchoscope; twightlight sedation is supposed to be induced.

@induh66 If you can take a break from the wine, even briefly will help. That will give the inflammation in your esophagus a chance to go down. Alcohol added to acid reflux is like throwing gasoline on a fire. There is a search box at the top of this page, you can type in 'acid reflux' or GERD and info should come up. The Mayo sight has info about modifying your lifestyle also. Main thing is; do not eat or drink anything except a little water 3 hours before bedtime. Elevating your bed 6" at the head of the mattress. Avoid acid forming foods, the site has a list of foods to avoid. My reflux was so bad that it was corroding my esophagus and I was on my way to having Barrett's Syndrome, which can lead to esophageal cancer. Be sure to look into acid reflux prevention; you will feel so much better!

Yes, i am so glad I did not hear that story before the procedure, Terri. Let this be a lesson to those undergoing in the future, conscious sedation and everything will be fine.