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MAC Dr. recommendations Mayo Rochester: What to ask at first appt?
MAC & Bronchiectasis | Last Active: Dec 29, 2022 | Replies (58)Comment receiving replies
@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
Replies to "@n4seth, Don't stress because now that you've found this group...they are a FOUNT of information! I..."
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
@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.
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Thank you Nannette! I am so pleased to have found you!!!! Thanks for the sleeping tips...my bed is slightly elevated but I will have to get a real wedge or a different bed. Also, I will add the nebulizer to my list of questions. I already have gastro problems so don't eat wheat and have limited my dairy and sugar. I'm still a bit shell-shocked and overwhelmed, but am so appreciative of the information that people are sharing. It's comforting to have a lifeline! Nancy