Newbie MAC caregiver with questions

Posted by Melissa Nelson @melissa08, May 5, 2022

I am a full time caregiver for my husband who has NTMAC and Bronchiectasis. Diagnosed in Sept. 2021 for the MAC, he is under the care of a pulmonology team at Johns Hopkins Bayview in Baltimore, MD. He is on the daily 3 drug regimen; 7% sodium chloride via nebulizer; inhalers and Aerobika device 2-3 times daily; and inhaled Amikacin.
His MAC is cavitary with a hole in one lung. He has a history of pneumonia and pseudomonas.
To date he has had 3 consecutive clear sputum cultures from Jan., Feb. and March 2022 with no MAC. However the 4th showed positive for MAC. A fifth sputum culture is in process.
He feels worse than he did before treatment began.
The Hopkins' team says, even though he's had several clear cultures, to expect a lag before the MAC side effects begin to diminish and he starts to feel better.
Two questions:
1) We were told by his team, and from all the information we have gathered from various forums and Google searches, that he needs 12 clear, MAC free sputum cultures followed by another 12-18 months of continuing drug therapy. Are the 12 clear cultures measured consecutively? As in his case, with the positive MAC culture following several negative cultures, do we restart the count? That seems counterintuitive given the heavy duty drug regimen.
2) It seems like there is a lot of experience with NTMAC and Bronchiectasis on this forum. We are overwhelmed most days by the therapy regimen and the lack of local support or personal experience with NTMAC. My husband's pulmonology team is very good but limited to mostly clinical responses to our questions. Can anyone share their experience with a return to feeling some improvement either during or following the drug regimen?
Thanks for the support of this forum and thanks in advance for any responses. I expect to be back with more questions.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Welcome @melissa08. You've come to the right place with your questions. Allow me to bring a few members into the discussion like @windwalker @sueinmn @poodledoc @ckscoville @thumperguy @crepass and many others to help answers your (first) questions.

In what way is your husband feeling worse now than before treatment? How are you doing handling all of this?

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@colleenyoung

Welcome @melissa08. You've come to the right place with your questions. Allow me to bring a few members into the discussion like @windwalker @sueinmn @poodledoc @ckscoville @thumperguy @crepass and many others to help answers your (first) questions.

In what way is your husband feeling worse now than before treatment? How are you doing handling all of this?

Jump to this post

Thank you for responding. The more the merrier!
My husband Bruce's breathing is much worse than before he started the full drug regimen, with shortness of breath coming with the slightest amount of exertion. He uses a finger oximeter to make sure that his oxygen levels are okay and they always seem to fall within the normal range at 94-97. This from a guy who walked 8 miles a day without fail a little more than a year ago.
He's also experienced weight loss, 10 pounds since January (182 down to 172), too low for a guy who is 6'6" with an already slim build. He has increased fatigue, and decreased appetite coupled with a complaint that various foods don't taste like they used to.

This may be too much information but here goes.
His Hopkins' team introduced the antibiotic regimen one drug at a time over a three month period with adjustments made following sputum cultures and blood tests. In September 2021 he began taking Azithromycin, followed by Rifampin, then Ethambutol. He also had a PICC line put into his upper arm in early October for infusions of Amikacin 3 times per week.
The infusions lasted about a month, and were subsequently discontinued following measurable hearing loss.
In early December, after several rounds of testing, the Azithromycin was also stopped due to its ineffectiveness in his treatment. In late December an inhaled version of Amikacin, Arikayce, was introduced as was a new oral antibiotic, Clofazimine, in substitution for the Azithromycin.
That's been the antibiotic regimen Bruce has followed coupled with a sodium chloride nebulizer and Aerobika device that he uses twice daily, along with a couple of inhalers.
Any insight or shared experience welcome.

As for me, thank you for asking. It's a challenging time. We spent several years prior to the MAC diagnosis trying to figure out, with our primary care doctor and other specialists, what was going on in Bruce's lungs. Much, much testing resulted in the MAC diagnosis and a shift to the Hopkins' pulmonology team, all of whom are excellent on the clinical side. Not so much on the hand holding.
With the advent of the Covid-19 pandemic we isolated and have continued to do so through the various Greek cousin variants and sub-variants. Our life is a layer cake of anxiety that is more worrisome on some days than others. We have tried to maintain our mutually quirky sense of humor and stay connected to our kids, family and friends in ways that lessens exposure for Bruce to the Russian roulette impact of any potential ailments, Covid or otherwise.
As Bruce's "care partner", a Hopkins' term, my day to day handling of his treatment protocols, tracking progress and doctor visits, coupled with managing household tasks, can be overwhelming. But we persevere.

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@melissa08

Thank you for responding. The more the merrier!
My husband Bruce's breathing is much worse than before he started the full drug regimen, with shortness of breath coming with the slightest amount of exertion. He uses a finger oximeter to make sure that his oxygen levels are okay and they always seem to fall within the normal range at 94-97. This from a guy who walked 8 miles a day without fail a little more than a year ago.
He's also experienced weight loss, 10 pounds since January (182 down to 172), too low for a guy who is 6'6" with an already slim build. He has increased fatigue, and decreased appetite coupled with a complaint that various foods don't taste like they used to.

This may be too much information but here goes.
His Hopkins' team introduced the antibiotic regimen one drug at a time over a three month period with adjustments made following sputum cultures and blood tests. In September 2021 he began taking Azithromycin, followed by Rifampin, then Ethambutol. He also had a PICC line put into his upper arm in early October for infusions of Amikacin 3 times per week.
The infusions lasted about a month, and were subsequently discontinued following measurable hearing loss.
In early December, after several rounds of testing, the Azithromycin was also stopped due to its ineffectiveness in his treatment. In late December an inhaled version of Amikacin, Arikayce, was introduced as was a new oral antibiotic, Clofazimine, in substitution for the Azithromycin.
That's been the antibiotic regimen Bruce has followed coupled with a sodium chloride nebulizer and Aerobika device that he uses twice daily, along with a couple of inhalers.
Any insight or shared experience welcome.

As for me, thank you for asking. It's a challenging time. We spent several years prior to the MAC diagnosis trying to figure out, with our primary care doctor and other specialists, what was going on in Bruce's lungs. Much, much testing resulted in the MAC diagnosis and a shift to the Hopkins' pulmonology team, all of whom are excellent on the clinical side. Not so much on the hand holding.
With the advent of the Covid-19 pandemic we isolated and have continued to do so through the various Greek cousin variants and sub-variants. Our life is a layer cake of anxiety that is more worrisome on some days than others. We have tried to maintain our mutually quirky sense of humor and stay connected to our kids, family and friends in ways that lessens exposure for Bruce to the Russian roulette impact of any potential ailments, Covid or otherwise.
As Bruce's "care partner", a Hopkins' term, my day to day handling of his treatment protocols, tracking progress and doctor visits, coupled with managing household tasks, can be overwhelming. But we persevere.

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@melissa08… It is no wonder you are feeling discouraged. Success didn't lead to hurrahs and "let's stop this awful regimen". This group is the place for you!
I had MAC and lost one lung lobe completely. No surgery to remove since I am "too old" at over 70. I got rid of MAC and got off the Big 3 after 14 months. However, I had copious amounts of mucous and shortness of breath. Candida caused the excess mucous and I got rid of it with "Candida Cleanse herbal treatments in 6 months. My doctor was amazed. Taking antibiotics for so long causes new problems, often candida.
I also have asthma and nebulize 2 times a day. Postural drainage once a day has made a big difference in getting the mucous out. See You tube for ideas on positions based on where your infections are located.
I have GERD which is a major contributor to mucous and asthma. I have found that clear Ensure nutrition drink goes down well when nothing else is appealing. Once the fluids are up, the appetite often comes back.
Now, we want you to take care of yourself while taking care of Bruce. Do something you enjoy. If you are too discouraged to think of something, we'll have many ideas,

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Hey Melissa, I’ve Al ways heard 3 clear sputum consecutively, and that 18 months is the minimum antibiotic regimen. My ID doctor has just switched me to 2 (off rifampin due to low platelets). My sputum cultures usually take 4 months to come back before growing Mac. I have heard that it means that I may have low Mac growth, but I will try to complete regimen. Right now I’m recovering from a viral infection that left me wiped out. I wanted to connect it and blame it on Mac. But it is more a function of my decreased immune system. So for the next year (that I have on antibiotics, I will try to hang tight and not overdue things. My job is a sore point…. Not sure how I will handle that. Good luck. We are here.

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Melissa & Bruce…welcome. “Care Taker” does sound like an institutional label. As wife & husband, mother & father, sure your resume of living and sharing, giving and receiving LOVE trumps the care over and over millions of times throughout the years. Your example of living is a true gift to your children and friends.

This group is also a reward. These persons share freely their histories. The successes and moments of disappointment. This kind of support cannot be measured. Doctors, teams of clinicians, are directly responsible for delivering the best patient care possible; however, as many can testify to, it can and does fall short of the emotional discomfort and depression that settles into our being when we are labeled with a chronic disease. My doctor suggested I speak with a psychologist (which I resisted strongly). Two years later, living with regimens and MAC…I made the decision to release some of the sadness and futility on a different doctor, and made my appointment with a psychiatrist. Of course, a psychiatrist is a doctor who prescribes medication (not so much the talk therapist), but in the few discussions we did have, it helped me refocus. Looking in the personal mirror of self, I now embrace my “not so well lungs” and decide to love my body as imperfect as it is, do the best I can for it, and just love back as much as I can as long as I can as well as I can.

Continue on and feel well.
Regina

REPLY
@cmi

Melissa & Bruce…welcome. “Care Taker” does sound like an institutional label. As wife & husband, mother & father, sure your resume of living and sharing, giving and receiving LOVE trumps the care over and over millions of times throughout the years. Your example of living is a true gift to your children and friends.

This group is also a reward. These persons share freely their histories. The successes and moments of disappointment. This kind of support cannot be measured. Doctors, teams of clinicians, are directly responsible for delivering the best patient care possible; however, as many can testify to, it can and does fall short of the emotional discomfort and depression that settles into our being when we are labeled with a chronic disease. My doctor suggested I speak with a psychologist (which I resisted strongly). Two years later, living with regimens and MAC…I made the decision to release some of the sadness and futility on a different doctor, and made my appointment with a psychiatrist. Of course, a psychiatrist is a doctor who prescribes medication (not so much the talk therapist), but in the few discussions we did have, it helped me refocus. Looking in the personal mirror of self, I now embrace my “not so well lungs” and decide to love my body as imperfect as it is, do the best I can for it, and just love back as much as I can as long as I can as well as I can.

Continue on and feel well.
Regina

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@cmi…I would suggest a licensed social worker as talk therapist and helper for solving medical problems. Medical doctors often think only about professionals like them when they make referrals. Physical therapists, social workers, respiratory therapists and counselors at aging centers can offer practical advice or support groups. Telehealth appointments are available and usually covered by insurance. Take advantage of any help that is offered.

REPLY
@egayle187

@melissa08… It is no wonder you are feeling discouraged. Success didn't lead to hurrahs and "let's stop this awful regimen". This group is the place for you!
I had MAC and lost one lung lobe completely. No surgery to remove since I am "too old" at over 70. I got rid of MAC and got off the Big 3 after 14 months. However, I had copious amounts of mucous and shortness of breath. Candida caused the excess mucous and I got rid of it with "Candida Cleanse herbal treatments in 6 months. My doctor was amazed. Taking antibiotics for so long causes new problems, often candida.
I also have asthma and nebulize 2 times a day. Postural drainage once a day has made a big difference in getting the mucous out. See You tube for ideas on positions based on where your infections are located.
I have GERD which is a major contributor to mucous and asthma. I have found that clear Ensure nutrition drink goes down well when nothing else is appealing. Once the fluids are up, the appetite often comes back.
Now, we want you to take care of yourself while taking care of Bruce. Do something you enjoy. If you are too discouraged to think of something, we'll have many ideas,

Jump to this post

Thank you, thank you, for the thoughtful advice and the virtual pat on the back. Both are greatly appreciated. Getting Bruce to take in enough fluids is an issue, not surprisingly since he feels like he is underwater most days with the amount of sputum he brings up, sometimes with very few breaks.
Managing MAC is challenging. Finding this discussion group and reading the stories and recommendations feels like our own personal tunnel will get shorter and the road less bumpy.

REPLY
@melissa08

Thank you, thank you, for the thoughtful advice and the virtual pat on the back. Both are greatly appreciated. Getting Bruce to take in enough fluids is an issue, not surprisingly since he feels like he is underwater most days with the amount of sputum he brings up, sometimes with very few breaks.
Managing MAC is challenging. Finding this discussion group and reading the stories and recommendations feels like our own personal tunnel will get shorter and the road less bumpy.

Jump to this post

Melissa – Thank You for providing me with an idea of what it must have been like for my husband when I was being treated for MAC. I too had coughing, profound fatigue, no appetite, weight loss, altered sense of taste…

A few of the things that helped my recovery were a water glass always at hand, no matter where I sat, tiny, nutritious snacks/meals every hour throughout the day, and protein drinks and smoothies.

Something else I learned was that before nebbing and airway clearance to walk a little – in the yard, down the block or even in the house it seemed to help move the mucus.

Another was to walk every day for a little while no matter how awful I felt – like Bruce I had always been a walker. At first it was only around the yard once, sit for a while and do it again. I gradually worked up to one mile, then two over a period of many weeks. This actually lifted my depression better than anything, even though I often needed a nap when I got home.

Caregiving is also a tough job. Have you found one small thing you can do for yourself each day to make things go more smoothly?

I wish you both an easier road as you go forward.
Sue

REPLY
@sueinmn

Melissa – Thank You for providing me with an idea of what it must have been like for my husband when I was being treated for MAC. I too had coughing, profound fatigue, no appetite, weight loss, altered sense of taste…

A few of the things that helped my recovery were a water glass always at hand, no matter where I sat, tiny, nutritious snacks/meals every hour throughout the day, and protein drinks and smoothies.

Something else I learned was that before nebbing and airway clearance to walk a little – in the yard, down the block or even in the house it seemed to help move the mucus.

Another was to walk every day for a little while no matter how awful I felt – like Bruce I had always been a walker. At first it was only around the yard once, sit for a while and do it again. I gradually worked up to one mile, then two over a period of many weeks. This actually lifted my depression better than anything, even though I often needed a nap when I got home.

Caregiving is also a tough job. Have you found one small thing you can do for yourself each day to make things go more smoothly?

I wish you both an easier road as you go forward.
Sue

Jump to this post

Thanks for your comments, Sue.
Bruce does keep water at his elbow 24/7 but doesn't drink as much as he should, mostly due to how much and how often he is coughing and bringing up sputum. It's a vicious cycle.
As I said in my initial post, he was an avid walker for years, clocking 8 miles a day until MAC laid him low. He picked it back up, walking a mile or two per day, off and on since treatment started but over the past couple of months his shortness of breath has been so crippling that he had to stop. Oxygen levels are good though so the source has us stumped.
He has an appointment with his pulmonologist next week for which we have a lengthy list of issues and questions. Keeping fingers crossed for answers and guidance.

REPLY
@melissa08

Thanks for your comments, Sue.
Bruce does keep water at his elbow 24/7 but doesn't drink as much as he should, mostly due to how much and how often he is coughing and bringing up sputum. It's a vicious cycle.
As I said in my initial post, he was an avid walker for years, clocking 8 miles a day until MAC laid him low. He picked it back up, walking a mile or two per day, off and on since treatment started but over the past couple of months his shortness of breath has been so crippling that he had to stop. Oxygen levels are good though so the source has us stumped.
He has an appointment with his pulmonologist next week for which we have a lengthy list of issues and questions. Keeping fingers crossed for answers and guidance.

Jump to this post

Big suggestion – have the pulmonologist order a treadmill test for him and monitor O2 and heart rate. My friend who had COPD was able to resume walking with a small O2 concentrator that she put in a backpack. Her O2 sats dropped from 90-01 to low 80s when we tried to walk.

Also, tell him if he drinks water often, it thins the mucus and eventually reduces the coughing. REALLY! You might have mentioned Mucinex – I use 600 mg Mucinex LA (guaifenesin only formula) and N-acetyl-cysteine 600 mg twice a day to thin the mucus. Both can be pricy, but if it works, find it on line in larger quantities a lot cheaper.

You, my friend, are an awesome caregiver. If he doesn't thank you every day, I will!
Now, what have you done for yourself today? A walk in the yard, a few pages of a book? Pulled out your knitting, crochet or Sudoku for while you are waiting for the doc next week?

Sue

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