New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics….or not….since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

@ling123

@amelia We are the same age. I have been coughing for over 20 years. Many years ago when I was in graduate school, a chest X-ray showed scarring in my lungs and a skin test for TB was positive. Then sputum samples were ordered because of positive skin test. But the test came back negative. The conclusion was that I was exposed to TB bacteria when I was a child. Although I never developed TB, my lungs were scarred because of the exposure. Many years later, my pulmonologist suspects that I got bronchiectasis from scarred lungs and MAC from bronchiectasis. I have not read any report on mortality of MAC and I don't intend to. My pulmonologist and I have decided that I will go to see him every 12 months or as needed if I start to feel worse, to monitor any development in my lungs. But after the big scare of coughing up large amount of blood and spending the night in the ER a few years ago, there has no any such incident since. Each chest X-ray or CT scan continues to show the scarring in my lungs but also show gradual improvement in the cloudiness that showed up when I was first diagnosed with MAC. And as I said before, I feel great and live a very active life. Besides playing tennis regularly, I just came back from a trip out west where my husband and I hiked a 14-mile (round trip) mountain trail with 4,000 feet elevation gain that took us to a height of 11,000 feet above sea level. For this reason, I believe I'm in the clear for as long as my chest X-ray and CT scan do not show worsening condition. As far as I know, if you don't have other underlying lung disease or compromised immune system, it is possible that MAC can clear without treatment. If it's not, you will know because things will worsen. So you'll only worry about it if/when that happens. I'm borrowing @windwalker Terri's motto to wrap up my answer, "Don’t let the worries of tomorrow steal from the joys of today". That is exactly what I live by but can't verbalize it as well as Terri does. So if you are feeling fine, don't let this thing called MAC steal your thunder. At our age, slowing down is a given.

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@ling123 Excellent post Ling. I especially like the last sentence. I think a lot of our slowing down is not all on the disease's part; but, also just part of the aging process. From what I have seen from some members, the more active you are, the better you feel. It also makes your lungs stronger.

Liked by ling123, lorifilipek

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@alleycatkate Hi Kate! I want to hear all about your Mayo visit with Dr. Leventhal!

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@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!!

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@alleycatkate Kate, thanks for all the useful information, including about 7% saline and GERD! (This website is a godsend!)

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@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. 🙁

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@lorifilipek

@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. 🙁

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@lorifilipek …Haha…that is so cute! Almost sounds like it could be dangerous. So funny.
I just rejected my first wedge…a 6" wedge that you just put on top of your mattress. Tried it last night and it was a joke. I wound up uprighting it so the angle was about 85 degrees…almost upright. Think I need at least a 12" or maybe 15" wedge. Not even sure that will do it…Most certainly the 3 hour fast before bedtime did not work either… Thanks for sharing your experience with the wedge…and the spoon story too. 🙂 You are so right about our water crisis here…Big sugar and agriculture practices have made a muck of it. Kate

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@sueinoregon Hi Sue. Thought I'd check in on you. How are you doing today?

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@alleycatkate

@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!!

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@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

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@america

@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

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@america Just follow the guidelines for Ger/acid reflux. Cut way back on acid producig foods. i.e. caffiene, alcohol, tomatoe sauce, etc. Don't eat or drink 3 hrs before bedtime. Can learn a lot more by searching on the Mayo website.

Liked by america

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@america Hello…Yes…Dr L is just wonderful and instills a great deal of confidence. About the reflux..His two "suggestions" were given as if that was all that would be needed. No eating and minimal (just sips) of water for 3 hours before bed and to get a wedge or elevate the bed at the head. I never eat anything after dinner but I do drink lots of fluids…so maybe that will have some impact. I ordered a firm 7" wedge online today after reading many reviews on wedges. I've had reflux for many years…so if this is the trick, I will be dancing. As I mentioned, the slippery elm was the only thing i found that has helped but he seemed not to like that I took it after dinner and also that it coats the esophagus and stomach…Perhaps concerned about it aspirating into the lung ?? Oh…he also gave me a Mayo pamphlet on Gerd…almost like an afterthought. It has the regular advice for reflux…diet, weight loss etc….
Glad to hear that you are doing so well with the Tobramycin. Take care. Kate

Liked by america

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@windwalker

@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!

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@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!

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@shooei

@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!

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@ 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

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@shooei

@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!

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@shooei ….I am sorry that I have no thoughts on that. I only had blood when I have had pneumonia and was hacking like a wild woman. It sounds right though that you do a milder solution so that you do not irritate your lungs further. Hoping others on this site will chime in with their lung condition versus the salinity of their sodium chloride solution. Kate

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@lorifilipek

@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. 🙁

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@lorifilipek I had the same problem with the wedge on top of my mattress. It was fine if I slept on my back but when I tried to sleep on my side it would bend me in a weird position at the waist also. Since I’m only 5 feet tall, I now push it lower on the bed and add an extra pillow at the top so it now comes to my hip and is more comfortable there. But I also slide down during the night and have to readjust. I wish I could put the blocks under my bed to raise the head, but I have an 18th century Chippendale 4 post bed and it just wouldn’t work. I already have 2 steps to get into my bed, I don’t think I could raise it up any higher! My husband does complain about having to face the wedge like a “a wall”, but I don’t cough and clear my throat all night anymore so that makes him, (and me) happy. Lol. I guess we all just have to keep trying until we find something that works. I have to admit though, some nights I just toss that wedge to the floor in annoyance and sleep on my stomach and hope for the best.
Gina

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@flib

@ 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

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@flib Hi there. I got a giggle from reading about your long lungs. I must say, I have never heard of that! Is it possible that the 3% saline is also too much of an irritant for your lungs? Maybe you need to take a break from it and see if your cough improves.

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