← Return to MAC Dr. recommendations Mayo Rochester: What to ask at first appt?

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@n4seth

My questions so far include:
How severe is my case? Prognosis?
Treatment options and side effects?
Effectiveness of treatments?
Duration of treatment?
How many cases have the Eau Claire doctors dealt with? Are there other patients like me in this area?
What lifestyle changes do I need to make?

Please help! Are there any other questions I should had for my first consult?

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Replies to "My questions so far include: How severe is my case? Prognosis? Treatment options and side effects?..."

@n4seth Welcome to our group. I cannot tell you how much I have learned here and how much it has eased my mind after my diagnosis of MAC. I do not see how you were diagnosed...Was it a bronchoscopy? What I would want to find out from your Dr would be ...Do I have bronchiectasis? (Most of us do...it is a structural lung disease that often leaves one prone to infection). I would also try to address any causes that might have resulted in MAC ...such as acid reflux, possible hot tub or swimming pool usage. If you are aspirating fluid into your lung at night because of acid reflux, you will need to get that under control. Do you need treatment at this point? Not all of us are on antibiotics and take a wait and see approach as the antibiotics can be difficult and not always provide the desired results or the MAC can return after the treatment was successful. It also seems that there can be a natural conversion without treatment. I personally would like to know more about that and how often that occurs. ?? There are lots of things that the folks on this site do to keep their lungs clean and as healthy as possible. YOu might ask if you should nebulize a saline solution....most find a 7% solution very effective in helping to remove sputum. You will need a script for that along with the nebulizing machine. There are also devices to help you to knock the sputum off the lung walls so you can cough it up....such as an aerobika, acapella or a vest? I guess the most important is finding how much your lungs have been compromised and if you are a candidate for antibiotics. There are different approaches to antibiotics...not one size fits all. There are also supplements that many take to help clear the lungs and many on this site find them very helpful. Most Dr.s do not seem to address this. I personally am approaching this disease with diet and supplements as well as many tips I have learned on this site. I am fortunate to have a mild case of bronchiectasis and MAC. We are all here to try to help one another through this. This is a crummy time to find you have a lung issue with the current climate of Covid19 but try not to stress too much till you get to your appointment and get a handle on your situation. I think I probably went along having this disease for years without a diagnosis. I am actually really happy to be diagnosed as now I am able to take healthful steps for my lungs. I wish you good luck and good health going forward. Kate

@n4seth....hi there...I would ask about airway clearance..do I start doing it now, and if so what do I use ie aerobika..how many times a day is recommended, and duration....also, is it too soon to be nebulizing saline 7 percent x2 a day?? Exercise is extremely important, to get the mucus out of our lungs, so as not to create an infection...there is so much more to ask, bug it sounds like you have a great start....Mayo Clinic Connect is what allows me to live a better life with all the knowledge on this forum, especially from Terry...I'm from Toronto, and we were lacking info in so many areas...Knowledge is Power..you are in the right place🇨🇦