Good morning Miriam, you have found a great place to address your concerns here on Connect, since we have so many people who have had every conceivable treatment regimen for MAC. Not every case is immediately treated with antibiotics, some can be managed with rigorous airway clearance and nebulizing 7% saline.
When I first started treatment, I was quite ill with both MAC & pseudomonas, and very scared to begin treatment, then I found this wonderful group. They taught me many strategies for managing the disease and meds, and I got help from my pulmonologist's nurse as well.
Once I felt a little better, I traveled throughout 18 months of treatment with the Big 3, but more slowly due to the fatigue and other side effects. I also continued my volunteer activities, and helping with my small grandson. I can still do all of that with my airway clearance routine - I just need to reserve about 30 minutes once or twice a day to do it.
I am glad you are having a consult at Duke - are you making a list of questions to ask?
I just read your message where you said your airway clearance is 30 minutes once or twice a day. Can you tell me your routine that takes 30 minutes. Mine is currently at least an hour. Thank you!
I am on Ethanbutol, Azithromycin, Rifamapin since January 2022 and my MAI is regressing. If I have not recognized any side effects attributable to them. I have chemotherapy effects from lung cancer. I will be talking these antibiotics for 1.5 years; I have one year left.
I attribute my MAI to raising Gouldian finches and maybe owning an African Grey Timneh. Birds are beautiful but dirty which is why I gave them away. Hope I did not make someone else sick.
I just read your message where you said your airway clearance is 30 minutes once or twice a day. Can you tell me your routine that takes 30 minutes. Mine is currently at least an hour. Thank you!
Two puffs on my inhaler upon arising, gat showered &dressed, etc. Sit down at the computer & neb 7% saline using handheld neb (takes 5-8 min.) The neb gets me coughing, so between airway-clearing coughs I use my Aerobika for 3 sets of breathing. Between neb, Aerobika, coughing and putting everything into hot soapy water to soak it is under 30 minutes. If I am having an exacerbation, I use either levalbuterol or budosenide neb before saline - then it's about 35 minutes.
This works for me - I don't find postural drainage or vest necessary as I am good at coughing stuff up - though I will do some bending and stretching and a brisk walk midday if I feel like there is more mucus to bring up. My neighbors are used to seeing me walk and pause to cough.
I daresay every person here has a different routine, but this has kept me health for almost 3 years with 2 mild exacerbations. My pulmonologist has even said I may not need saline every day, so I skip about twice a week. When "indoor season" hits with colds and flu, I will be a lot more diligent.
Sue
I could think and write all day, and probably miss something. Here is a starting point I found on the ntminfo.org web site:
QUESTIONS TO ASK YOUR DOCTOR
Sometimes it is helpful to have a list of questions so you don’t forget. It might
help to bring someone with you to your appointment if you are especially
anxious. These questions were written from a patient’s perspective and are not
intended as medical advice.
1. What strain(s) of mycobacteria do I have? Where in my lungs is the
infection located?
2. Was drug sensitivity testing performed? If so, what were the results?
If not, can and should it be done?
3. What drugs will I be taking? What is the dosing level for each medication?
Can and should therapeutic drug levels be checked?
4. When and how do I take my medication?
5. How long do you expect me to be on the medications?
6. What side effects will I be likely to have? Which side effects should be
reported immediately? Do you have any suggestions for coping with side
effects?
7. Will IV drugs be necessary?
8. Will I also need inhalers?
9. How often will I have:
a. Follow up appointments with you?
b. X-rays/CT scans?
c. Lab work? What kind?
d. Hearing or vision tests? (Try to have hearing and vision tests done
before starting your medications so they will have a baseline by which
to judge any changes.)
e. Sputum cultures?
10. What other monitoring will I need?
11. Should I use an airway clearance device? How often?
12. Can I still take over the counter medicines/vitamins/supplements? (Be
sure to tell your doctor about ALL nutritional supplements, herbs, or over
the counter products that you take. These can interact with your medicines
or decrease their effectiveness.)
13. Would I be a candidate for surgery? Why or why not?
14. What if I lose my appetite?
15. What if I feel depressed?
16. Can I exercise? What kind of exercise?
17. What precautions should I take? What activities should I avoid?
Some of these may apply to you, others not. Just pick and choose what you would like to ask. I will add these, to me very important ones:
1) Is there an alternative we can try before the antibiotics, such as rigorous airway clearance with nebulized saline & close monitoring?
2) Will I have quick access to a PA, respiratory therapist or knowledgeable RN to answer my questions if I start the medications?
Does this help? I sure wish I had known what to ask when I was diagnosed.
Good luck with your appointment - let me know what you learn, please
Absolutely where I’m at ! This is so incredibly helpful. I clicked through and added the probiotic question. I have been so curious as to how to move forward with this decision. Feeling like somebody’s got to be the quarterback, and I guess that’s me! With all y’all’s help!!
Absolutely where I’m at ! This is so incredibly helpful. I clicked through and added the probiotic question. I have been so curious as to how to move forward with this decision. Feeling like somebody’s got to be the quarterback, and I guess that’s me! With all y’all’s help!!
You said, "Feeling like somebody’s got to be the quarterback, and I guess that’s me! Absolutely! Another term for it is being your own best advocate. We all need to remember each doc has hundreds, if not thousands, of patients. (I didn't misstate - my former PCP had a caseload of 3000 when she quit!) We each have just one body, and we know it better than anyone else. We also need to gather info from every source, all of our doctors, therapists, nurses, Mayo Connect, family history, Dr. Google (😜 just kidding) - then put it together and make a decision.
Sue
Two puffs on my inhaler upon arising, gat showered &dressed, etc. Sit down at the computer & neb 7% saline using handheld neb (takes 5-8 min.) The neb gets me coughing, so between airway-clearing coughs I use my Aerobika for 3 sets of breathing. Between neb, Aerobika, coughing and putting everything into hot soapy water to soak it is under 30 minutes. If I am having an exacerbation, I use either levalbuterol or budosenide neb before saline - then it's about 35 minutes.
This works for me - I don't find postural drainage or vest necessary as I am good at coughing stuff up - though I will do some bending and stretching and a brisk walk midday if I feel like there is more mucus to bring up. My neighbors are used to seeing me walk and pause to cough.
I daresay every person here has a different routine, but this has kept me health for almost 3 years with 2 mild exacerbations. My pulmonologist has even said I may not need saline every day, so I skip about twice a week. When "indoor season" hits with colds and flu, I will be a lot more diligent.
Sue
Sue,
I use a massage gun for percussion for about 5 or six minutes, then stretch for another 5 minutes before nebbing levabuterol (5 min) and 7% saline ( 20 min).
After that I am trying different things to bring up mucous. I use the Aerobika for 3 to 6 rounds, autogenic breathing, and also try postural drainage, while using the autogenic breathing. I hardly bring up anything., only about a teaspoon of white flaky or stringy stuff. I have brought up a very tiny light yellow glob twice. I am so discouraged that I cannot bring up mucous.
Any suggestions?
Sally
I am on Ethanbutol, Azithromycin, Rifamapin since January 2022 and my MAI is regressing. If I have not recognized any side effects attributable to them. I have chemotherapy effects from lung cancer. I will be talking these antibiotics for 1.5 years; I have one year left.
I attribute my MAI to raising Gouldian finches and maybe owning an African Grey Timneh. Birds are beautiful but dirty which is why I gave them away. Hope I did not make someone else sick.
Interesting you have the bird connection. I too blame birds. 12 years ago I had 6-8 pigeons make a home in my small horse barn and they made a mess for 2 years. I power washed repeatedly without any face covering. Then the symptoms started to appear.
Sue,
I use a massage gun for percussion for about 5 or six minutes, then stretch for another 5 minutes before nebbing levabuterol (5 min) and 7% saline ( 20 min).
After that I am trying different things to bring up mucous. I use the Aerobika for 3 to 6 rounds, autogenic breathing, and also try postural drainage, while using the autogenic breathing. I hardly bring up anything., only about a teaspoon of white flaky or stringy stuff. I have brought up a very tiny light yellow glob twice. I am so discouraged that I cannot bring up mucous.
Any suggestions?
Sally
Not everyone brings up obvious mucus. The purpose of airway clearance is not really to bring it up (unless you have a lot.) It is to thin and mobilize it in a way that your damaged airways cannot on their own. If your lungs sound clear with a stethoscope, there probably isn't much down there. You probably are bringing some up throughout the day and swallowing it without really realizing what is happening. When I am healthy, I doubt I bring up a teaspoon of mucus no matter what I try. But I am exercising the airways to keep them as healthy as possible, and when I am ill, boy does the junk come out! So airway clearance is really a long term maintenance therapy, not a competition to see how much mucus you can bring up.
So do a basic lung clearance every day for 15-20 minutes - you can alternate methods if you like - then get on with life!
Sue
Interesting you have the bird connection. I too blame birds. 12 years ago I had 6-8 pigeons make a home in my small horse barn and they made a mess for 2 years. I power washed repeatedly without any face covering. Then the symptoms started to appear.
@mikemolnar45 & @rstel7272 I'm pretty sure (as was my ID doc) that my MAC came from feral chickens nesting in my winter yard/garden where I worked extensively without a mask. So I hired out that work & disappeared while it was being done, until the guy finished, washed down the area & it dried. 5 years later, the chickens are long gone and I am cautiously working out there again (in a mask.) So far, so good.
We have been told for over 30 years "no birds" because of asthma & now bronch. My daughter broke the rule for a while in her foolish 20's, but has since some to her senses. I must admit I miss her sweet bird, a little green parrot.
Oh the things we learn as we grow older...after some of the stuff I was exposed to as a kid and in the workplace, I'm amazed to be alive.
Sue
Not everyone brings up obvious mucus. The purpose of airway clearance is not really to bring it up (unless you have a lot.) It is to thin and mobilize it in a way that your damaged airways cannot on their own. If your lungs sound clear with a stethoscope, there probably isn't much down there. You probably are bringing some up throughout the day and swallowing it without really realizing what is happening. When I am healthy, I doubt I bring up a teaspoon of mucus no matter what I try. But I am exercising the airways to keep them as healthy as possible, and when I am ill, boy does the junk come out! So airway clearance is really a long term maintenance therapy, not a competition to see how much mucus you can bring up.
So do a basic lung clearance every day for 15-20 minutes - you can alternate methods if you like - then get on with life!
Sue
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Hi Sue,
I just read your message where you said your airway clearance is 30 minutes once or twice a day. Can you tell me your routine that takes 30 minutes. Mine is currently at least an hour. Thank you!
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Helpful -
Hug
1 ReactionI am on Ethanbutol, Azithromycin, Rifamapin since January 2022 and my MAI is regressing. If I have not recognized any side effects attributable to them. I have chemotherapy effects from lung cancer. I will be talking these antibiotics for 1.5 years; I have one year left.
I attribute my MAI to raising Gouldian finches and maybe owning an African Grey Timneh. Birds are beautiful but dirty which is why I gave them away. Hope I did not make someone else sick.
-
Like -
Helpful -
Hug
3 ReactionsTwo puffs on my inhaler upon arising, gat showered &dressed, etc. Sit down at the computer & neb 7% saline using handheld neb (takes 5-8 min.) The neb gets me coughing, so between airway-clearing coughs I use my Aerobika for 3 sets of breathing. Between neb, Aerobika, coughing and putting everything into hot soapy water to soak it is under 30 minutes. If I am having an exacerbation, I use either levalbuterol or budosenide neb before saline - then it's about 35 minutes.
This works for me - I don't find postural drainage or vest necessary as I am good at coughing stuff up - though I will do some bending and stretching and a brisk walk midday if I feel like there is more mucus to bring up. My neighbors are used to seeing me walk and pause to cough.
I daresay every person here has a different routine, but this has kept me health for almost 3 years with 2 mild exacerbations. My pulmonologist has even said I may not need saline every day, so I skip about twice a week. When "indoor season" hits with colds and flu, I will be a lot more diligent.
Sue
-
Like -
Helpful -
Hug
2 ReactionsAbsolutely where I’m at ! This is so incredibly helpful. I clicked through and added the probiotic question. I have been so curious as to how to move forward with this decision. Feeling like somebody’s got to be the quarterback, and I guess that’s me! With all y’all’s help!!
You said, "Feeling like somebody’s got to be the quarterback, and I guess that’s me! Absolutely! Another term for it is being your own best advocate. We all need to remember each doc has hundreds, if not thousands, of patients. (I didn't misstate - my former PCP had a caseload of 3000 when she quit!) We each have just one body, and we know it better than anyone else. We also need to gather info from every source, all of our doctors, therapists, nurses, Mayo Connect, family history, Dr. Google (😜 just kidding) - then put it together and make a decision.
Sue
-
Like -
Helpful -
Hug
4 ReactionsSue,
I use a massage gun for percussion for about 5 or six minutes, then stretch for another 5 minutes before nebbing levabuterol (5 min) and 7% saline ( 20 min).
After that I am trying different things to bring up mucous. I use the Aerobika for 3 to 6 rounds, autogenic breathing, and also try postural drainage, while using the autogenic breathing. I hardly bring up anything., only about a teaspoon of white flaky or stringy stuff. I have brought up a very tiny light yellow glob twice. I am so discouraged that I cannot bring up mucous.
Any suggestions?
Sally
Interesting you have the bird connection. I too blame birds. 12 years ago I had 6-8 pigeons make a home in my small horse barn and they made a mess for 2 years. I power washed repeatedly without any face covering. Then the symptoms started to appear.
Not everyone brings up obvious mucus. The purpose of airway clearance is not really to bring it up (unless you have a lot.) It is to thin and mobilize it in a way that your damaged airways cannot on their own. If your lungs sound clear with a stethoscope, there probably isn't much down there. You probably are bringing some up throughout the day and swallowing it without really realizing what is happening. When I am healthy, I doubt I bring up a teaspoon of mucus no matter what I try. But I am exercising the airways to keep them as healthy as possible, and when I am ill, boy does the junk come out! So airway clearance is really a long term maintenance therapy, not a competition to see how much mucus you can bring up.
So do a basic lung clearance every day for 15-20 minutes - you can alternate methods if you like - then get on with life!
Sue
-
Like -
Helpful -
Hug
4 Reactions@mikemolnar45 & @rstel7272 I'm pretty sure (as was my ID doc) that my MAC came from feral chickens nesting in my winter yard/garden where I worked extensively without a mask. So I hired out that work & disappeared while it was being done, until the guy finished, washed down the area & it dried. 5 years later, the chickens are long gone and I am cautiously working out there again (in a mask.) So far, so good.
We have been told for over 30 years "no birds" because of asthma & now bronch. My daughter broke the rule for a while in her foolish 20's, but has since some to her senses. I must admit I miss her sweet bird, a little green parrot.
Oh the things we learn as we grow older...after some of the stuff I was exposed to as a kid and in the workplace, I'm amazed to be alive.
Sue
Thank you for that explanation, Sue!