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

Love the idea of the painting tutorials
I do try and distract myself, but dealing with the aerobic for me is absolutely the hardest because I have to try so hard to get the mucus up I do six rounds of 10 along with Huffs
It’s very hard for me to bring up mucus as well unless I’m about to get an exacerbation

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Try drinking very warm water throughout day and especially after nebulizing with some pleasant distraction. It always works on bringing up sputum for me even if a little delayed. A very gentle way to do airway clearance.

Also, just doing the active cycle of breathing and autogenic breathing as you go through your day. Google “bronchiectasis toolbox” and you will get great video demos of these simple breathing exercises that you can do most anywhere, any time. They also are very helpful to keep things moving in the lungs. What follows is a brief description of the autogenic breathing. There’s an app called “Autogenic Drainage” that you can download on your phone. Dr. McShane emphasizes the “holding” of your breath in these exercises because it opens up the airways so the secretions can move through more easily.

Here’s what I do: A number of shallow inhalations, holds for 3 seconds, and slightly forceful exhalations through pursed lips, followed by a serious of deeper inhalations, holds. and slightly forceful exhalations through pursed
lips again. This is something you can do on a walk or doing chores around the house.

I hope this helps you.

REPLY
Profile picture for irene5 Irene Estes @irene5

To all of you who have shared condolences with me : Thank you from the bottom of my heart. Neither Eric nor I were smokers but lived in environments that probably contributed to his getting sarcoid and my getting MAC. The outpouring of kindness and support has been beyond anything my dear husband would have imagined as he was a quiet man. One of our ten is a soccer couch for a high school team, head of another soccer league , and a social worker! The amount of support there has been overwhelming! Fifty five years together , ten children, sixteen grand babies, and our first great grand baby in March is quite a blessing and a true gift. I am so glad my husband can finally breathe. God is good all the time! Blessings, Irene

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Irene- I just read your post letting us know of your loss, your thoughts and your understanding of how we can find things to be grateful for at a most difficult time "I am so glad my husband can finally breathe."
I found that finding the smallest things to be grateful for, as you have, helps us to help ourselves get through the difficult experience and the overwhelming moments of just wanting to fall on our knees from the overwhelming realization of what has happened and one is going through.
Yes, may the many memories that you, and that each of your children have, help "you all" at this time.
Barbara

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Profile picture for paxmundi @paxmundi

Try drinking very warm water throughout day and especially after nebulizing with some pleasant distraction. It always works on bringing up sputum for me even if a little delayed. A very gentle way to do airway clearance.

Also, just doing the active cycle of breathing and autogenic breathing as you go through your day. Google “bronchiectasis toolbox” and you will get great video demos of these simple breathing exercises that you can do most anywhere, any time. They also are very helpful to keep things moving in the lungs. What follows is a brief description of the autogenic breathing. There’s an app called “Autogenic Drainage” that you can download on your phone. Dr. McShane emphasizes the “holding” of your breath in these exercises because it opens up the airways so the secretions can move through more easily.

Here’s what I do: A number of shallow inhalations, holds for 3 seconds, and slightly forceful exhalations through pursed lips, followed by a serious of deeper inhalations, holds. and slightly forceful exhalations through pursed
lips again. This is something you can do on a walk or doing chores around the house.

I hope this helps you.

Jump to this post

I meant “followed by a series” not by “serious”!

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Profile picture for blm1007blm1007 @blm1007blm1007

Irene- I just read your post letting us know of your loss, your thoughts and your understanding of how we can find things to be grateful for at a most difficult time "I am so glad my husband can finally breathe."
I found that finding the smallest things to be grateful for, as you have, helps us to help ourselves get through the difficult experience and the overwhelming moments of just wanting to fall on our knees from the overwhelming realization of what has happened and one is going through.
Yes, may the many memories that you, and that each of your children have, help "you all" at this time.
Barbara

Jump to this post

Thank you Barbara.

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Profile picture for jillcrawford @jillcrawford

I find doing the aerobic a very tough because I order to get mucus out. I have to breathe in very hard and hold it and then expel also very intensely. I do 5 to 6 sets of 20 each and by the time I’m done I am totally exhausted, even if I’m watching TV or on my iPad never left. Thank you for your Em

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That's an aggressive schedule. I usually do three sets of ten two times a day, or three times if I'm extra mucus-y that day. I usually tolerate it pretty well. I sometimes use an acapella instead, which is a bit more gentle but possibly slightly less effective, at least for me. Best of luck to you.

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Hi, Jill, i am 78 diagnosed with BE last December amd macrolide-resistant mycobacterium abscessus subspecies abscessus from a bronchoscopy in February. Also was treated in March for pseudomonas and staph. Have appointment with ID doc tomorrow. Only 4 drugs tested susceptible on my m abscessus and they have really nasty possible side effects. I will carefully review the ID doc's treatment plan and decide whether to go ahead. I want to prioritize quality of life, comfort, and dignity. Right now i am leaning towards not treating as the rigors of treatment like PICC line and home infusions plus side effects like hearing loss seem to outweigh the benefits. M abscessus treatment has very low success rates. So for me the big factor is quality of life in the time i have left. It is a very personal decision and not an easy one. I will post again after i decide. Hope you can be at peace with whatever you choose to do. Best, Nan

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Hi Jill
I have decided not to take the meds also. I will be 75 here soon and I was diagnosed with MAI and BE 4 years ago. I have continued to exercise and do airway
clearance twice a day. So far doing good. I totally understand your feeling about not taking the meds. We all have to do what's best for us. I hope things go well for you. This disease scares me but I am trying to do my best so that I may never have to take them. God Bless

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I don't think you should base your decision on projected life expectancy, but on life possibility. It is possible you can live another 20 years, and those years will be better with some kind of treatment. If you are only bothered by exacerbations, perhaps the new drug Brinsupri would be indicated. Please discuss with your doctor. (I am 78 and have never been on long-term antibiotics as I'm doing fine with nebulizing and airway clearance which I don't consider it to be grueling, just sometimes inconvenient)

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