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Newbie MAC caregiver with questions
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.
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Hi Melissa, is Bruce improving with the inhaled Amkacin (no liposome suspension)? I just started inhaled Amikacin (0.2g in 2ml 0.9% saline solution) 1-2 times per day. I wonder if it will generate any benefit. Hope it is effective for Bruce! Take care!
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1 ReactionHi caontm,
Thanks for your note and good thoughts. Ultimately Bruce didn’t make the switch to the inhaled Amikacin. After reviewing the process of using inhaled Amikacin with his ID/Pulmonologist, including adding its twice a day regimen to all of his daily antibiotics and saline nebulizers, they decided to stick with Arikayce.
I am glad to hear it is working so well for you. This discussion board certainly indicates a wide ranging number and types of therapies used to battle MAC and Bronchiectasis. The participants and the information and support they provide are a wonderful resource. Thanks and be well.
Melissa
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2 ReactionsHi Melissa,
I'm an NJH patient and, per guidelines, the treatment protocol requires 12 months of continuous treatment post initial negative sputum test. Best case, this would mean that a patient who converts to negative after one month of treatment would have to continue for another 12 months (with consistent monthly negative sputums), resulting in a total of 13 months of continuous treatment. With respect to Arikayce, typically, this is recommended in refractory NTM cases, meaning cases where the patient is not converting to negative after 6 months of treatment.
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1 ReactionHi,
Yes we are aware of the 12-18 months of continuous treatment, or in my husband's case possibly/probably longer.
So far Bruce has had multiple consecutive negative cultures with a positive showing up in the middle. He is not considered to be on a successful track yet, after 10 months of treatment.
Following a sensitivity analysis on the positive culture his ID/Pulmonologist believes he has two strains of MAC or mixed MAC, since the recent drug susceptibilities differed in part from his initial MAC drug analysis.
His MAC is cavitary. He also has Bronchiectasis, in addition to radiation caused Esophagitis and a saber sheath Trachea.
Amikacin was switched out for inhaled Arikayce liposome after Bruce developed serious hearing loss.
My husband has a lot going on in his lungs so, as his caregiver, I welcome any comments, insight, suggestions, and war stories.
Thanks much.
Hello Melissa,
You and Bruce have so many challenges. I hope you have seen an improvement in any aspect? When we last communicated he was having overwhelming mucous. Did he try postural drainage to get it out more easily?
Is he drinking and eating more now or does his esophagitis bother him too much?
I have found that zinc and calcium supplements have calmed my inflamed throat.
With all his problems and constant treatment, you must be doing a terrific job at management to keep him at home. Cudos to you!
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1 ReactionDear Sue, I am ritapearls husband and caregiver.Yes we are still around and we are overwhelmed with hope from each of your advises.
Rita’s therapy for the last 7 months is Arikayce, azithromycin 500,ethanbutol1200 mg all 3 times a week,albuterol and 3% twice a day.I have come a long way meaning no pneumonia or flareups.Still mac positive.She is eating better and going to physical therapy.We are getting outside more but refrain from anything indoors due to Covid concerns.I am constantly seeking new therapies and offer them to our Bronchiectasis Team at NYU Langone Pulmonary.Sometimes I think you help as much.
I hope your health is up to par and enjoy the summer.
Richie
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5 ReactionsRichie -
Thank you so much for your kind words. When we communicate with other members, we often wonder what has happened when we don't hear from them for a while.
I am so glad to hear that ritapearl is doing better. It will also be encouraging to others here, who often feel there is no "light at the end of the tunnel."
I too remained MAC positive throughout my treatment, but once we stopped (after over 18 months) saline has kept me healthy enough to stay off more meds.
Please give her a big hug from me, and tell her to "hang in there", and thank you for stepping up to take care of her.
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3 ReactionsGood morning Richie ritapearl has a wonderful and dedicated person by her side.
I am interested to learn more about the excess mucus and affect of GERD and Asthma on same, if you do not mind?
Noone seems to be able to explain my 7oz mucus production most times I neb.
But I was diagnosed with asthma although I am largely unaware of it...when taking Symbicort for years I didn't notice an improvement...now I am being asked to go back on it.
Severe gastritis and reflux also diagnosed...now sleeping on a wedge pillow and trying to elevate.
Any information would be appreciated. Thank you.