New Diagnosis of MAC/MAI & I'm scared

@alleycatkate Kate, regarding GERD, I’ve tried 2 different types of wedges for sleeping and ended up rejecting both. The first was the standard 2-foot long wedge that made me bend at the waist instead of at the hips, which was very uncomfortable. The second was a full bed wedge. It was only 3 inches at the head to an eighth inch at the foot. However, even with the mild slant, both my husband and I ended up sliding down the bed in our sleep, with our feet scrunched up at the bottom of the bed in the morning.

Your reminding me not to sleep on my right side also resulted in an hilarious experiment this morning. I typically fall asleep most quickly when my husband cuddles me by spooning. I’ve been sleeping on the right side of the bed (if facing up to the ceiling) for the 40 years of our marriage, so when we spoon, I’m lying on my right side. This morning while we were cuddling (not spooning), I remembered your post and I suggested we try cuddling by switching place on the bed, so that when we ended up spooning, I'd by on my left side. We would have made a great comedy on “Candid Camera!” Our arms were all akimbo trying to do the mirror image of what we’d been doing for so long. I almost ended up on the floor laughing so hard. (I think I’ll first try staying on the right side of the bed, but not spooning to fall asleep. 🙂 )

Regarding the Red Tide and blue-green algae in Florida, I'm not at all hopeful. If current industrial farming practices continue and the problems of climate change continue to be ignored, I expect things will only get worse. 🙁

@windwalker ...Hi Terri...It was a GREAT appointment with Dr L at Mayo!! He says he calls you Terresa...not Terri...and, of course, he knows you and your case (though he did not speak to it). The weight of the world has been lifted from my shoulders. I have both mild MAC and mild Bronchiectasis. I need to have antibiotics on hand for flares (not ones used for the big 3 treatment) preferably something like augmentin & continue with my 2x a day nebulizing and a yearly check-up. My biggest takeaway from the appointment was for me to handle my acid reflux. If any here are not aware, most on this site have acid reflux which can aspirate into the lungs. Even if you do not think you have it, there can be "silent reflux"...so check it out...a clue to it is a constant clearing of the throat or a feeling of a lump in your throat. Maybe see a gastroenterologist. He did not like my treatment (Slippery Elm tea after dinner) as the most important thing is absolutely no eating 3 hours before laying down (including daytime naps) and no drinking in that time period except maybe a half a cup of water. The other biggie is not to sit straight up in bed or propped up with pillows when you feel it as you put pressure on the diaphragm. You need to be at an angle... The two fixes are either a block 4-6 inches thick under the legs of the bed at the head or buy a wedge and place it under the mattress....and no mention of drugs (thank the Lord....he is one of the first Dr's to not push drugs!!) I loved him and everything about him... He told me with a smile to relax and that I will outlive my husband. Oh, on the brief mention of that article I posted with 7% saline killing MAC in an in-vitro situation...he says he knows of no studies done that prove this so the premise was sort of dismissed. Thank you, Terrie, for your thoughts on the wonderful healing and considerate Dr at the Mayo Clinic!!

@america. Hi, I am so delighted you went to Mayo and you saw Dr L. Thanks to Terri. He is one of the best and we are not rush into taking meds. I love the guy too because he knows exactly what he’s doing. I am excited that I am on my 19th day of my Tobramycin that he prescribed and will be done with the first month soo!!! Then I get a break for a month and start again. The good thing my body is adjusting well to the meds. I also have really bad reflux! Any suggestions? I bought the wedge mattress and it help but I do need more than that. Anyway good luck. Thanks

@lorifilipek , The 7% sodium chloride is inhaled saline (salt). It is good for lung hygiene and keeps the 'cooties' from wanting to live in them. You don't seem to be very ill yet from this disease; doing the nebulized saline may very well keep you from getting sicker. My doctor is a big proponant for it and so am I. @alleycatkate Kate, can you please dig that article out of your archieves with that sodium chloride chart in it for Lori? I thought I had bookmarked it, but guess I didn't. Thank you!

@windwalker, @alleycatkate, on the 7% sodium. My doc has me on 3% because of my tendency for hemoptysis (seems I have a small bout of that about every 6 months, with some bouts of pink tinged sputum) and he says the 7% would be more irritating. My MAC, as well as bronchiectasis, are both considered mild, which seems weird to me because of the bleeding but I guess some are just more prone to that? Anyway, do any of you with hemoptysis still neb the 7%? Any thoughts? I only do 3% once a day. It definitely helps me clear the gunk! Thank you!

@windwalker, @alleycatkate, on the 7% sodium. My doc has me on 3% because of my tendency for hemoptysis (seems I have a small bout of that about every 6 months, with some bouts of pink tinged sputum) and he says the 7% would be more irritating. My MAC, as well as bronchiectasis, are both considered mild, which seems weird to me because of the bleeding but I guess some are just more prone to that? Anyway, do any of you with hemoptysis still neb the 7%? Any thoughts? I only do 3% once a day. It definitely helps me clear the gunk! Thank you!

@alleycatkate Kate, regarding GERD, I’ve tried 2 different types of wedges for sleeping and ended up rejecting both. The first was the standard 2-foot long wedge that made me bend at the waist instead of at the hips, which was very uncomfortable. The second was a full bed wedge. It was only 3 inches at the head to an eighth inch at the foot. However, even with the mild slant, both my husband and I ended up sliding down the bed in our sleep, with our feet scrunched up at the bottom of the bed in the morning.

Your reminding me not to sleep on my right side also resulted in an hilarious experiment this morning. I typically fall asleep most quickly when my husband cuddles me by spooning. I’ve been sleeping on the right side of the bed (if facing up to the ceiling) for the 40 years of our marriage, so when we spoon, I’m lying on my right side. This morning while we were cuddling (not spooning), I remembered your post and I suggested we try cuddling by switching place on the bed, so that when we ended up spooning, I'd by on my left side. We would have made a great comedy on “Candid Camera!” Our arms were all akimbo trying to do the mirror image of what we’d been doing for so long. I almost ended up on the floor laughing so hard. (I think I’ll first try staying on the right side of the bed, but not spooning to fall asleep. 🙂 )

Regarding the Red Tide and blue-green algae in Florida, I'm not at all hopeful. If current industrial farming practices continue and the problems of climate change continue to be ignored, I expect things will only get worse. 🙁

@ windwalker I too am on 3%, my doctor's recommendation I did try the 7% just to see if I could do it. She was right. I was having coughing spasms that wouldn't stop and all but knocked me out. I'm back on 3% but still coughing a lot. I have a prescribed codeine
cough syrup I take when the night coughing just won't quite. I hate taking it. Even when it's the smallest sip I feel sleepy and dumb the next day...I'm a lousy addict, thank god. I have been nebulizing twice a day but I may cut back to once until my lungs are not so very sensitive. I've also been told I have long lungs. I don't think it's a compliment. I wonder if that makes it harder to cough up. Flib