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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pled | @pled | Sep 12 9:45am

In reply to @jillcrawford "Love the idea of the painting tutorials I do try and distract myself, but dealing with..." + (show)

Over time, I discovered by accident that I could cough productively while laying on my back with my knees up. I do it every day now, for 15-20 minutes. My version of postural drainage, I guess. I have tried, but not mastered the huff cough, so I just go with this.

Toni D. | @tcd518 | Sep 12 1:22pm

In reply to @irene5 "I think your last sentence says it all- do what you can tolerate and leave the..." + (show)

Oh Irene, I'm so sorry to hear about your husband and hope your decades of memories bring you comfort. Sending you thoughts of peace and sympathy.

irene5 Irene Estes | @irene5 | Sep 13 6:37am

In reply to @mjb24 "@irene5 So sorry to hear about your husband but how beautiful that you shared so many..." + (show)

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

pled | @pled | Sep 13 8:48am

In reply to @pmmar1 "I am 80 years old and have decided to let "nature take its course" as nature..." + (show)

This is my philosophy exactly, although I hadn't been able to express it so clearly. Thank you for sharing.

pmmar1 | @pmmar1 | Sep 13 11:28am

In reply to @pled "This is my philosophy exactly, although I hadn't been able to express it so clearly. Thank..." + (show)

@pled, thank you for your kind words. I rather suspect there are many others in our community who are wavering with their decisions, and I want them to know, from my perspective anyway, there are patients out there who would rather have a quality of life as opposed to quantity -- and the fact that medications may or may not be helpful. My best to you and to others as we move into unknown territory -- which exists whether we have illnesses or not.

jillcrawford | @jillcrawford | Sep 13 1:20pm

In reply to @irenea8 "I wonder what it is about AC that you dislike so much? Nebulizing with saline and..." + (show)

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

jillcrawford | @jillcrawford | Sep 13 1:22pm

In reply to @cahcb4769 "You couldn’t have said it better. That is exactly how I feel! I’m 74 and have..." + (show)

I totally agree with you. Although I’m not giving up the fight yet if it gets tooo onerous at 75 I feel I will Enjoy life to the extent possible.

jillcrawford | @jillcrawford | Sep 13 1:24pm

In reply to @tcd518 "Oh Irene, I'm so sorry to hear about your husband and hope your decades of memories..." + (show)

I’m sorry to hear about your husband. That is just devastating. My husband and I have been together for seven years and we are almost like the same person now.
I can’t imagine what you’re going through and how painful it can be. I hope you are reaching out as much as possible and not isolating yourself.