Is treatment for Mac and airway clearance really necessary

Posted by jillcrawford @jillcrawford, Sep 10 12:09pm

I am 75 years old and I’m Weighing treatment options for Bronch and Mac
I would appreciate the input of older members of this group
I have had a series of -pneumonias for two years and I was recently diagnosed with Mac. Also Ucla did two surgeries during this time remove a huge Hernia and the then a sinus surgery
I have had a series of pneumonias and it felt like most of the year was one big exacerbation. I started airway clearance two months ago, and I absolutely loath it because it robs me of so much energy and time that I cannot do many other activities. Otherwise, I’ve been very active and good shape and have traveled extensively before all this
Here is my big question. At 75 life expectancy average is for women are about 80. I’m really weighing the benefit of starting Mac treatment and continuing the grueling airway clearance against just letting nature take its courses I …living my remaining life as best I can at least what remains of it
during the past two years, the bronch spread from one lobe to three, but I was not treated with airway clearance until two months ago. I also had an abscess and necrotizing tissue last year and my upper right lobe is a mess. I have it in three lobes… Osats and pulmonary function are OK
So here’s my question to those of you that are older
Do you think all this treatment is worth it?
I can’t imagine being on three airway clearance 2x day or two forever. Also starting treatment for Mac is a big commitmentShould I just let nature take it’s course Maybe I’ll be lucky and I won’t have too many recurrences. Otherwise I’m very active and healthy. I am mostly asymptomatic between recurrences.. no respiratory symptoms except for runny nose no cough ever, no fever etc.
However, I do feel somewhat ill a lot of the time from weakness and severe muscle pain perhaps Caused by ongoing infection, inflammation or mac.. I don’t know.
I would greatly appreciate your thoughts as I am wrestling with this decision.

I would love to hear from anybody out there who is older and has considered these issues
Thank you so much, Jill

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Profile picture for jillcrawford @jillcrawford

I use an ombra nebulizer and use only 3% but it takes me about 25 -40 minutes to complete
The really hard thing for me is using the aerobika I have to do about 30 minutes of 10 breath six times Followed by 3huffs Strenuous
Otherwise, I can’t get mucus up. This exhausts me for the rest of the day maybe I’m doing too much or I’m doing it too hard.

Thank you jill

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Should 9 switch to pare
Can you use an aerobika with it simultaneously like you can with ombra
Theank you jill

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Profile picture for jillcrawford @jillcrawford

It’s not really boredom that I have with airway clearance, but I find it very exhausting particularly the aerobicA
I can’t get much mucus up at all unless I do six rounds of 10 breathing out really really hard. That makes me incredibly exhausted for the rest of the day and then I do it again at night.
I’m just thinking of the cost benefit at my age
Thank you so much for your thoughts I will Reconsider

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Even if you do not get up any mucus at all it still has benefits to get the saline in there so just breath easier with the Aerobika and do not strain. If you have stuff to come up it will! Take it from one who gets up TONS of mucus from the Aerobika and I do not have to strain. You do blow out with a little force but not overly. And do less rounds with it.

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Jill, I'll be 73 at the end of this month and have been dealing with bronchiectasis and MAC since 2022 when I was diagnosed and probably even before that. I'm sorry you've had to deal with all the pnemonias and other issues as well. While I haven't had any of that yet, and I hope I don't, I do know it's a possibility. I went on the big 3 every other day when I was first diagnosed and did fairly well except for trying to manage gastro issues with the azithromycin, but I stuck it out for 14 months and would have continued but for the side effects of neuropathy caused by the ethambutol and hearing loss caused by the azithromycin. While I had been declared MAC free after three months of treatment via bronch cultures, three months after I stopped treatment, the MAC was back. Not sure whether it never went away or if it was a reinfection. Long story short, I couldn't tolerate the medication the doctor put me on the second time on an everyday basis. So now I'm doing watchful waiting as some have mentioned. I nebulize with an Ombra compressor using 7% saline. I tried 3% first, and it really didn't help me get anything up. The difference was marked when I switched to 7%. I also attach my Aerobika to the nebulizer which combines two therapies into one. Most of the time, I read my email, look over the new posts for our Mayo Clinic Connect group or read other articles of interest. I find it passes the time quickly. The nebulizing Aerobika combo takes about 25 minutes twice a day. I also use an oscillating vest for 20
minutes twice a day right after my nebulizing. If I feel congested in between those times, I might use the Autogenic Drainage app that I downloaded onto my iPhone for a 2.5 miniute session. That helps too. Yes, these things do take time out of my day that I'd rather spend doing other things, but I think it helps me to feel clear and in the long run I feel it's worth it if it prevents a rapid decline. I just had a CT that showed everything was stable at this time as compared to my CT earlier this year and the one last year. If I have a particularly busy day, I might skip the morning vest session, but I always make sure I get the nebulizing/Aerobika combo in. And by the way, before I did the nebulizing, my doctor had given me the Aerobika and I was told to do sessions like you describe. They were absolutely exhausting and didn't help loosen things up at all but just made me dizzy and tired. For me the combo of the neb and Aerobika works the best.

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Profile picture for cahcb4769 @cahcb4769

You couldn’t have said it better. That is exactly how I feel! I’m 74 and have had BE and MAC for 4 years. Everything is slowly getting worse. I did try the big 3 and landed in the hospital from side effects. Recently my Dr. added ethambutol, back in the hospital. Went off it a couple of days ago as it made me so sick I couldn’t eat! Became weak and dehydrated. Moral of this story and you nailed it for me, I’m going to stick with what I’m doing, nebulizing with 7% saline every morning, and then I have to nebulize with an inhaled antibiotic- I feel these two are helping get “stuff” up and that’s fine with me, but I don’t feel well at all, I never really did all those 4 years. Did not qualify for any surgery, so, I’m now going to “let nature take its course” because I can’t handle all the pain that comes from all the medication etc..I have wonderful friends, great grandchildren….my pulmonologist finally said at my last visit that I roughly have about 3 years so why kill myself in the meantime by feeling sick every day. Thank YOU for unknowingly helping ME! My new decision - keep doing what I can tolerate and leave the rest to the creator.

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I think your last sentence says it all- do what you can tolerate and leave the rest up to the creator. I’ve had MAC and aspergillosis for so many years and have been treated for both. Some treatments have been harder than others , but I’ve given it my best shot. I was told back in 2019 I would die. Only the good God knows that answer. My husband of 55 years just died last week of complications from sarcoidosis. He was 79. He was diagnosed in 2002. My pulmonologist at UMASS insists I nebulize to keep other unwanted bacteria out of my lungs. I don’t think it’s just because we have MAC but rather we have bronchiectasis which provides a perfect breeding ground for bad bacteria. Sometimes what we can do becomes what we must do. Irene5

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Profile picture for jillcrawford @jillcrawford

There is such a kind response And really addresses the question directly
Thank you for your thought
Coincidentally my Pulmo just agreed to try me on the new treatment. I hope I can handle it.
I feel the same way about life. In fact the idea of masking in public is very Repugnant except on airplanes.
Are you still doing airway clearance twice today? That alone is exhausting?
Why did your doctor say you only have three years on what was that predicated? Thank you so much for your reply Jill.

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I don't do airway clearance. I don’t feel it’s helps like the nebulizing that I do every single day.
My Dr. said he thinks I have 3 years because even after doing exactly as I was told, every single CT scan comes back showing that the infection has spread a little more. He said it was slow growing but it feels so much worse now. I’m not going to hang on to his words and I’m DONE with trying other antibiotics - I’m down to Azithromycin and my inhaled daily antibiotic. They seem to be ok, we shall see.

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Profile picture for irene5 Irene Estes @irene5

I think your last sentence says it all- do what you can tolerate and leave the rest up to the creator. I’ve had MAC and aspergillosis for so many years and have been treated for both. Some treatments have been harder than others , but I’ve given it my best shot. I was told back in 2019 I would die. Only the good God knows that answer. My husband of 55 years just died last week of complications from sarcoidosis. He was 79. He was diagnosed in 2002. My pulmonologist at UMASS insists I nebulize to keep other unwanted bacteria out of my lungs. I don’t think it’s just because we have MAC but rather we have bronchiectasis which provides a perfect breeding ground for bad bacteria. Sometimes what we can do becomes what we must do. Irene5

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@irene5 So sorry to hear about your husband but how beautiful that you shared so many years together. Praying for you.

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Profile picture for irene5 Irene Estes @irene5

I think your last sentence says it all- do what you can tolerate and leave the rest up to the creator. I’ve had MAC and aspergillosis for so many years and have been treated for both. Some treatments have been harder than others , but I’ve given it my best shot. I was told back in 2019 I would die. Only the good God knows that answer. My husband of 55 years just died last week of complications from sarcoidosis. He was 79. He was diagnosed in 2002. My pulmonologist at UMASS insists I nebulize to keep other unwanted bacteria out of my lungs. I don’t think it’s just because we have MAC but rather we have bronchiectasis which provides a perfect breeding ground for bad bacteria. Sometimes what we can do becomes what we must do. Irene5

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Irene, so very sorry for your loss and condolences to you and your family. May the memories of many happy years together provide you comfort.

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Profile picture for irene5 Irene Estes @irene5

I think your last sentence says it all- do what you can tolerate and leave the rest up to the creator. I’ve had MAC and aspergillosis for so many years and have been treated for both. Some treatments have been harder than others , but I’ve given it my best shot. I was told back in 2019 I would die. Only the good God knows that answer. My husband of 55 years just died last week of complications from sarcoidosis. He was 79. He was diagnosed in 2002. My pulmonologist at UMASS insists I nebulize to keep other unwanted bacteria out of my lungs. I don’t think it’s just because we have MAC but rather we have bronchiectasis which provides a perfect breeding ground for bad bacteria. Sometimes what we can do becomes what we must do. Irene5

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I'm very sorry about your husband's death. My thoughts are with you.

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Profile picture for jillcrawford @jillcrawford

I use an ombra nebulizer and use only 3% but it takes me about 25 -40 minutes to complete
The really hard thing for me is using the aerobika I have to do about 30 minutes of 10 breath six times Followed by 3huffs Strenuous
Otherwise, I can’t get mucus up. This exhausts me for the rest of the day maybe I’m doing too much or I’m doing it too hard.

Thank you jill

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I think you're doing it too hard and maybe too long. IMO, it's likely counterproductive if it's exhausting you. Your body needs energy to fight infections. too. I think Linda (below) had some good suggestions.
Some thoughts for you to consider and choose. . Limit aerobika time to 20" or whatever amt of time you can do without being exhausted.
Use one with a manometer. It'll help you regulate force.
Try 7% saline if you don't have contraindications like CHF, renal issues, etc that requires regulating sodium. I find if I take a few mini breaks to sip, it's very tolerable.

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I am 80 years old and have decided to let "nature take its course" as nature has a way of determining everyone's life expectancy, disease or not. I felt worse on the Big 3 than not and want to enjoy what "good" years, hopefully, I have left. At my age especially I don't want to feel worse than having the disease itself. I am fairly active now whereas I wasn't on the Big 3. I walk 1-2 miles daily with less fatigue than on the Big 3 and I keep busy reading, illustrating pictures, and educating myself in areas of interest. I was unable to do any of these while on the meds due to the fatigue/brain fog and some undesired side effects. I can't imagine feeling that way for the years I have left. There is longevity in my family, my mother passing at 101 and my father at 96 but neither had MAC/BE or the rare fungus, which cannot be treated to the degree that other fungi can, and which continues to grow worse in my lungs. I do know I only have so so much time left on this earth, and I want to make the best of that time, shortened or lengthened, in a natural way.

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