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

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@alleycatkate

@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

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Replies to "@n4seth Welcome to our group. I cannot tell you how much I have learned here and..."

Kate, I find your words so comforting and your questions so helpful! I do have acid reflux, and swallowing problems-who knew? I'm also an avid gardener and wondering about that, but know I have to take it one step at a time. I am a cancer survivor (I hope) and two years in a row the follow-up scans showed my lungs were inflamed resulting is a referral to pulmonology. Although I had been diagnosed with asthma nine years ago, the pulmonologist knew immediately it was not asthma and did the sputum cultures which resulted in my diagnosis. I feel very fortunate that he was able to identify it. Depending on what I find out, I would love to hear more about dietary changes and supplements that you are using. It is the beginning of another journey and the calming influence of the group has already been a great support! Thank you! Nancy

Hi, Sue. You mentioned supplements. May I ask what you use? I've been drink a lot of ginger/turmeric and tulsi tea. I was also drinking licorice tea but stopped because of the adverse information out there to licorice. Any suggestions? I would appreciate your input and any others from other folks on this same journey. Thank you! Toni