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

@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🇨🇦

@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🇨🇦

Thank you Jennifer! Specific questions will really help with my conversation and I will add yours to my list. I agree that knowledge is power am I learning a lot! One week ago I was totally in the dark on this disease. I exercise regularly so I will keep that up. Have to say-I love your picture...you look healthy and happy! Nancy

I am so happy I found you! (Yes, I live in WI, but am close enough to do Rochester if recommended) The deep, ever present cough keeps me from ever getting a good night's sleep, but the fatigue is now more than just lack of sleep. I am feeling extremely anxious as well-probably because I don't have a plan yet and haven't started treatment. Being quarantined for the coronavirus is probably giving me way too much time to think and stress. Thank you Terri! It is so comforting to know I have a lifeline!

@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

Hi Nancy @n4seth Perfect info from Nan!! I just want to add about the acid reflux ...do not eat or drink for 2, preferably 3 hours before bedtime...maybe only a sip of water. I totally agree with her dietary steps but take them a good deal further...another discussion.
Oh...and since you love to garden...you should probably wear a n95 mask (if they are ever available again) as MAC is in the earth as well as in the water. Be particularly careful if you feel you need to handle peat and newly potted plants. I used to live in the dirt but now limit my gardening to mostly pruning. Initially, it can be overwhelming but hopefully, it will fall into place and you will become much more comfortable. Questions? Just shout out!! Kate

Is the head of your bed elevated? This should help.

@n4seth, Don't stress because now that you've found this group...they are a FOUNT of information! I was diagnosed four years ago and took the big three antibiotics for a year and my pulmonologist believes that I got mine because of acid reflux. I'll always remember him asking me if I slept on my stomach and I said yes! I'm a stomach sleeper! When you sleep on your stomach and have acid reflux...at night those stomach acids aspirate into your lungs and you don't even realize it. So you get yourself a wedge, I bought one that was just too big and too high and I felt like I was sleeping on a mountain but then I found a really good one with a slight less of an angle on the website or catalog from Hammacher Schlemmer. And then I sleep with one or two pillows on top of that.They actually have a WHOLE mattress wedge on that website but my husband didn't much care about sleeping on an angle so I got that one person one. I highly recommend nebulizing the 7% saline solution (and trust me that came from learning on this site because my pulmonologist didn't even prescribe it at that point. I had to ask for it.) These little bugs don't like hanging around when there's a salty environment. As for dietary changes I have pretty much stopped eating dairy, hardly any wheat and I've cut back on sugar. (I'm a sugar addict so it's very hard). Hope that helps. Nan

@nannette I was using the "single" wedge for a while. But, I really was NOT very comfortable. I kept getting a pain in my hip if I slept on my side. When I saw on this forum there was one for the whole bed that you put under the mattress!!, I was so excited. I bought that, and we put it under my mattress. I was SOOOOO much more comfortable. But, my husband doesn't like it! LOL He complains he slides down to the bottom of the bed. I told him, "Too bad! I can finally sleep comfortable again after 4 years! Give it 4 years, maybe you'll get used to it!" LOL But I have now found, I am going back to sleeping on my stomach. I'm hoping the incline will reduce the silent aspiration if I still have that. I am very happy with the whole mattress incline.