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.

@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, Hello. Because of your issue with hemoptysis, you may want to listen to your dr. and stay on the 3%. If that percentage is working for you to bring up the gunk, then I would think that is fine. If your see more bleeding than usual, let your dr. know about it. I hope you are feeling good.

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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 Hey Flib! After having some nights of extra long hours of sleep; I finally got some energy back today. Extra sleep and the drop in humidity has made a new person out me. How about you, Flib? Did you get your groove back yet?

Liked by Jennifer

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@windwalker

@shooei, Hello. Because of your issue with hemoptysis, you may want to listen to your dr. and stay on the 3%. If that percentage is working for you to bring up the gunk, then I would think that is fine. If your see more bleeding than usual, let your dr. know about it. I hope you are feeling good.

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Thanks so much for the replies!! @flib, I think you're right, long lungs is probably not a compliment, but it did make me laugh. Sounds like sticking with the 3% is probably good for me. I haven't posted here much, but I want to say what a great place it is to come and gather encouragement and information. I am very embarrassed to say I struggle with health anxiety, and coughing up blood just sends me into that fear – even though I know it is just sometimes a symptom of my MAC, I can't seem to make my anxiety fully accept that. Same way with the fatigue sometimes, I'll think something else must be horribly wrong and I'm dying and then later in that same day I can feel better, get up and accomplish things and decide I'm probably not dying after all. What a hot mess!!!

Liked by hydrang3a

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@shooei

Thanks so much for the replies!! @flib, I think you're right, long lungs is probably not a compliment, but it did make me laugh. Sounds like sticking with the 3% is probably good for me. I haven't posted here much, but I want to say what a great place it is to come and gather encouragement and information. I am very embarrassed to say I struggle with health anxiety, and coughing up blood just sends me into that fear – even though I know it is just sometimes a symptom of my MAC, I can't seem to make my anxiety fully accept that. Same way with the fatigue sometimes, I'll think something else must be horribly wrong and I'm dying and then later in that same day I can feel better, get up and accomplish things and decide I'm probably not dying after all. What a hot mess!!!

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@shooei Well, I thought I was going to die both yesterday and this morning. Really no energy and coughing like a choo chol train.
By this afternoon I was alive enough to go out and run errands, feed the cats, put away groceries and look around for more chores. No one has yet to totally explain this swing to me. I know air quality affects my breathing a lot. I just got a disability placard to hang in my car so I don't have to walk far to enter stores. It helps with the humidity and the cold. . Lack of exercise is another cause. Getting to the gym can feel like torture and trying to lift weights just silly. Then I do it and by the time I leave (half hour) I'm feeling kind of like my old self. This up and down stuff helps create some anxiety…you just can't count on yourself. At the same time, when it's up time, it gives you hope. Hot mess is right. My swearing vocabulary is fairly limited but I'm working on that too. I have all kinds of filthy names to call this disease. Keep putting one foot in front of the other. Anxiety is part of the pain of having this disease; but people do get better, they learn to cope and have a life. I remember coughing up blood and being really frightened. Eventually that went away. I don't know why. I'm not on any antibiotics (unable to take them…lost some hearing) I wonder if sometimes a blood vessel pops. Wishing you well. Flib

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@shooei

Thanks so much for the replies!! @flib, I think you're right, long lungs is probably not a compliment, but it did make me laugh. Sounds like sticking with the 3% is probably good for me. I haven't posted here much, but I want to say what a great place it is to come and gather encouragement and information. I am very embarrassed to say I struggle with health anxiety, and coughing up blood just sends me into that fear – even though I know it is just sometimes a symptom of my MAC, I can't seem to make my anxiety fully accept that. Same way with the fatigue sometimes, I'll think something else must be horribly wrong and I'm dying and then later in that same day I can feel better, get up and accomplish things and decide I'm probably not dying after all. What a hot mess!!!

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You made me feel better. I have anxiety and then feel better. Loved your comments.

Liked by shooei, hydrang3a

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@flib

@shooei Well, I thought I was going to die both yesterday and this morning. Really no energy and coughing like a choo chol train.
By this afternoon I was alive enough to go out and run errands, feed the cats, put away groceries and look around for more chores. No one has yet to totally explain this swing to me. I know air quality affects my breathing a lot. I just got a disability placard to hang in my car so I don't have to walk far to enter stores. It helps with the humidity and the cold. . Lack of exercise is another cause. Getting to the gym can feel like torture and trying to lift weights just silly. Then I do it and by the time I leave (half hour) I'm feeling kind of like my old self. This up and down stuff helps create some anxiety…you just can't count on yourself. At the same time, when it's up time, it gives you hope. Hot mess is right. My swearing vocabulary is fairly limited but I'm working on that too. I have all kinds of filthy names to call this disease. Keep putting one foot in front of the other. Anxiety is part of the pain of having this disease; but people do get better, they learn to cope and have a life. I remember coughing up blood and being really frightened. Eventually that went away. I don't know why. I'm not on any antibiotics (unable to take them…lost some hearing) I wonder if sometimes a blood vessel pops. Wishing you well. Flib

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@flib This sounds so much like me. So hard to understand why…today has been, feel like I am going to die, day.
I really miss my old self and hope for ALL of us we get our lives back!

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Hope you feel better soon. These crappy days are so hard for others to understand.

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@flib

@shooei Well, I thought I was going to die both yesterday and this morning. Really no energy and coughing like a choo chol train.
By this afternoon I was alive enough to go out and run errands, feed the cats, put away groceries and look around for more chores. No one has yet to totally explain this swing to me. I know air quality affects my breathing a lot. I just got a disability placard to hang in my car so I don't have to walk far to enter stores. It helps with the humidity and the cold. . Lack of exercise is another cause. Getting to the gym can feel like torture and trying to lift weights just silly. Then I do it and by the time I leave (half hour) I'm feeling kind of like my old self. This up and down stuff helps create some anxiety…you just can't count on yourself. At the same time, when it's up time, it gives you hope. Hot mess is right. My swearing vocabulary is fairly limited but I'm working on that too. I have all kinds of filthy names to call this disease. Keep putting one foot in front of the other. Anxiety is part of the pain of having this disease; but people do get better, they learn to cope and have a life. I remember coughing up blood and being really frightened. Eventually that went away. I don't know why. I'm not on any antibiotics (unable to take them…lost some hearing) I wonder if sometimes a blood vessel pops. Wishing you well. Flib

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@flip@shooei. I so identify with your comments. So strange to be so lethargic, sad, feeling that your life is over then to have it turn around and feel fine for awhile until the next shoe drops. Up and down does create anxiety as you never know if you will be OK for going out, being with people. Sry diffficult to plan. Also I find speaking exhausting. I love my friends and want to communicate but I wear myself out so quickly. I used to be very active and hope to be again but for now I am just getting use to all the lung clearing devices, nebulized Amikacin as well as nebulized saline’s, timing eating around the medications….learning to accept a plan of attack. Because I have an active lung infection cavity, acid reflux in addition to Bronchiectasis and MAC I am forgoing alcohol, carbonate drinks, spicy food, chocolate, caffein, sugar, and processed foods. Also I am underweight so am trying to gain 10 pounds while exercising to increase muscle strength and stamina. I get very sad sometimes missing my old happy carefree healthy self and it’s hard to feel pretty when you don’t feel good. Self esteem hits a new low. We all need to learn that although this is a struggle we can do this…we can feel better, we are not alone, and the sad times will pass. We need to find joy again. And spoil ourselves whenever we can. Wear lipstick more often if it makes us feel better. Sometimes I look like a bag lady and that doesn’t help. Let’s try our best to live again!

Liked by Jennifer, shooei

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@windwalker

@flib Hey Flib! After having some nights of extra long hours of sleep; I finally got some energy back today. Extra sleep and the drop in humidity has made a new person out me. How about you, Flib? Did you get your groove back yet?

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I got it back for a few hours. I think I'll sleep tonight and have a good day tomorrow. Glad you're out of the fog. Flib

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@windwalker

@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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@ Terri. I lay off the saline for a day and just once this evening. It did help the coughing. So, next time I'll no sooner to give it a rest.

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@flib

@ Terri. I lay off the saline for a day and just once this evening. It did help the coughing. So, next time I'll no sooner to give it a rest.

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@flib Great!

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@flib

I got it back for a few hours. I think I'll sleep tonight and have a good day tomorrow. Glad you're out of the fog. Flib

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@flib I had a pretty good day today. I ran a bunch of errands, including an hour long wait at DMV. I got a lot done and feel good about that. Extra rest was key. Hope you get lots of good sleep tonight for your good tomorrow.

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@hydrang3a I think the anxiety is almost as bad as the MAC

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@windwalker

@flib I had a pretty good day today. I ran a bunch of errands, including an hour long wait at DMV. I got a lot done and feel good about that. Extra rest was key. Hope you get lots of good sleep tonight for your good tomorrow.

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I was also at the DMV. Waited a long time but I didn't mind.Just sat and rested and watched humanity. I'm having a good morning…rare.

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@shooei

Thanks so much for the replies!! @flib, I think you're right, long lungs is probably not a compliment, but it did make me laugh. Sounds like sticking with the 3% is probably good for me. I haven't posted here much, but I want to say what a great place it is to come and gather encouragement and information. I am very embarrassed to say I struggle with health anxiety, and coughing up blood just sends me into that fear – even though I know it is just sometimes a symptom of my MAC, I can't seem to make my anxiety fully accept that. Same way with the fatigue sometimes, I'll think something else must be horribly wrong and I'm dying and then later in that same day I can feel better, get up and accomplish things and decide I'm probably not dying after all. What a hot mess!!!

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Hi @shooei I know how you feel, dont be embarrassed, I also have bad health anxiety and it is not uncommon so dont worry, Know the ups and downs so well. Lots of us on this site have struggled with mental health over MAC but have become better over time so hopefully you will to, MAC is so complicated especially when we are anxious. Take care Heather

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