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MAC diagnosis with w/limited continued symptoms
My mother is 86. A year ago, she had a sputum test, which confirmed the diagnosis of MAC. She had a chronic cough and was losing weight. The pulmonologist recommended a sputum test, and the diagnosis was confirmed. After the bronchoscopy, her coughing symptoms subsided, and we were told that this was probably due to the procedure removing the mucus from her lungs. We have also consulted with an infectious disease doctor who recommended monitoring her with scans every 3 months. We connected with a nutritionist about 6 months ago, who helped her stabilize the weight loss, but with minimal weight gain. She just saw her pulmonologist today, and the report was that the disease was spreading, but not at an alarming rate. His initial recommendation today was to reconnect with the ID doctor about treatment. My pushback was, and still is, that she is not presenting with symptoms. She doesn't cough and may be slower and short of breath, but only when she is doing too much, like using stairs. She doesn't require assistance, but she gets tired more easily. But she is 86. The doc agreed that we would wait another 3 months to reevaluate. She has had a history of gastrointestinal issues that have been resolved (constipation), and she is currently being treated for glaucoma, liver disease, and has stage 3 kidney disease. Our concern is the side effects of the multiple antibiotics on her organs and her ability to tolerate them while being able to maintain and possibly gain her weight back. She lost 20 pounds over the past 1 1/2 years (from 130# to 112# now). Her quality of life is very good right now but we were told that could change at any time and the antibiotics might be that much harder to tolerate if she is having respiratory issues as well. Not sure what question I have for you all except, does anyone have any experience with putting off the regimen at an advanced age like her? Just looking to see if we are being reasonable. In general, her pulmonologist and ID doctors have been very straightforward with us, but nobody knows what life will be like when this goes untreated if the symptoms start. Thank you for reading.
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I sympathize with you as you try to find best care for your mother. My friend who is 85 has had lung issues for the last 10 years. At one point she was diagnosed with MAC,. She did a cycle of the "Big 3" and got a negative sputum after 18 months. She was monitored regularly by Pulmonologist. A year later Mac came back. She did another cycle of Big 3 but ended it after 10 months. She did not see improved symptoms. Her lung scan showed pseudomonas. Next her doc suggested a course of injected meds which she could learn to give herself. She declined. Now she's been nebulizing saline and nebulizing Tobimyacin (separately). Tobi is one month on and one month off. She has not seen good results and dislikes the side effects. Coughing and mucus build up persist. Next week she visits her Pulmonary MD, hoping for alternatives.
Like your mother, she has had GI issues(constipation) and takes Linzess. She struggles to gain weight.
As she recounts her medical issues to me, I hear a series of "trial and errors" in finding what might clear up her lung infection. When seeking treatment, one important consideration is to weigh the "risk/benefit" because many meds have unbearable side effects.
Each person's condition is unique! I hope your mother's condition will improve.
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1 ReactionThank you for your concern. I wish your friend the best as well.
@carriew I'm totally on board with your reluctance to treat your Mom! At 86, just her age would seem to be a huge barrier to successful treatment, then you add her other ailments...
Let me just say that my Mom had Bronchiectasis form a lifetime in the paper industry and was diagnosed with NTM (called MAI back in 2010) at age 83. She had a number of other conditions of aging, and the doctors didn't even suggest antibiotic therapy - they just continued her nebs and "daily cough exercise" and treated her exacerbations (every 3-4 months) with azithromycin for 10 days, and she would improve for a while. She died at the end of 2011 of conditions completely unrelated to her BE or MAC. The last year was difficult enough - I was treated for MAC and Pseudomonas myself in my 60's and I cannot imagine that she would have survived the regimen with any quality of life whatsoever.
Maybe you can discuss your Mom's situation with her primary doc or with a palliative care specialist, and get their recommendation. Remember, the ID doc's focus is cure infections, the pulmonologist's is to improve lung function - neither may be well-focused on the bigger picture of overall quality of life.
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6 ReactionsThat is a great idea and makes total sense that they are "doing" their jobs. I have accompanied her on visits to the ID and pulmonologist, but not her primary care doctor lately. Out of the three, he appears to be the least open to me accompanying her on her visits, probably because I ask a lot of questions. I see you are a volunteer mentor; thank you for your response. How do I go about identifying a palliative care specialist?
Hi Carrie, I would start by calling a large hospital in my area - they often have someone on staff. You can also search for "Geriatric and Palliative care near [Mom's location]" or if she is in a large clinical system that has multiple specialties, there may be someone on staff with that as their specialty or sub-specialty.
I hope you find the help she needs. Do you think your Mom is ready to decide to just enjoy the rest of her life, with acute needs met like treating infections, but without a rigorous search for cures to tough things like MAC?
Having palliative care for Mom on her care team during her last, long hospitalization helped the whole family (there were 5 siblings and about as many grandkids present) realize we were past treatment and ready for comfort and quality in her last months. This was the first time everyone got "on the same page" and understood some things are irreversible. Everyone laid off and quit pressuring my sister and me to find a cure or treatment for multiple ailments, when our Mom was just tired of it all and wanted to relax.
Mom got to see and/or visit by phone with many friends and relatives in relative comfort without being prodded to have more treatments, more therapy, more appointments... When the time was right she transitioned to hospice care and died peacefully surrounded by loved ones.
I hope I have the opportunity to make the same choice when the time comes.
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2 ReactionsMy mom was thought to have MAC based on her CT's (trees in bud, ground glass, etc). She was about 90 when I took her to pulmonologist. She had been losing weight for quite a while and was in 80's of low 90's at appt. The kind pulmonologist didn't recommend a bronchoscopy to obtain a sputum because he said the treatment was too tough for her to endure. She was still able to participate in decisions and agreed. Her main issue was dropping her oxygen sats with walking, but they recovered quickly.
She died of other causes later.
Note: my CT's had similar findings and I didn't have MAC on culture, so it's possible she didn't have it.
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1 ReactionWhat does your mom want to do?