Why wouldn't a pulmonologist want to check for underlying MAC

@carolinediehl How frustrating! Since your condition is getting worse it certainly seems like a sputum culture would be reasonable. Does the doctor have you nebulizing saline and doing airway clearance?

When my Mom had Bronchiectasis and the doctor knew she would not tolerate the three antibiotics, they still treated with daily nebs and by prescribing a single antibiotic almost full-time for the last two years of her life to keep things tamped down. Not ideal, but it was the best for her.

If I was in your situation, I would certainly be looking for a more responsive doctor. It was also unprofessional of him to make the remark her did about another physician.

I agree with Sue that getting a second opinion with one of the Centers for bronchiectasis would be helpful.

My mom’s CT looked like MAC and she was referred to a pulmonologist who said she was too old and frail for the antibiotic routine. For her, that was true for the antibiotics. She was a 90 or 91, very frail and weighed only about 85 lbs. Shealso did not want much treatment for anything. Knowing what I do now, I would’ve requested cultures, a nebulizer and O2 for walking. Hindsight.

Even from the fact that you are posting here, I think your situation is different. You were even able to vacation. Pneumonia makes anyone weak for a bit.

Good luck to you. I hope you find a great doc.

@carolinediehl honestly it sounds like you need a new doctor. You could have a whole host of things growing in your lungs, many, maybe most of which are easier to treat than MAC. I would insist on sputum samples: respiratory, fungal and AFB. A bronchoscopy is not without risk but sputum samples are a simple straightforward place to start. If my doctor was unwilling to do sputum samples, myself, that would be all the reason I needed to find a new doctor. There is a lot of agism in the medical system. I don’t know your overall health but as Sue pointed out just because one can’t do a particular treatment path doesn’t necessarily mean there is no treatment path. Demand sputum testing. You haven’t said if you have bronchiectasis (“BE”) but if you do I suggest you seek out a specialist in BE as they will immediately appreciate the need for sputum testing and can help guide you depending on the outcome. If you do test possible for NTM I would want a specialist in NTM, particularly if there is concern that you may not tolerate the standard regimen. Your current doctor’s comments seem old school and outdated to me so it’s hard to say if his comments represent a true reflection of your circumstances. I suspect they may not.

@sueinmn He has me doing albuterol and saline twice a day but I'm not real compliant because of the 7% saline.

@carolinediehl while 7% saline is considered the gold standard, my Dr doesn’t prescribe 7% so I’m on 3%. You might want to ask if you can try that or alternate strengths if 7% is too harsh. The albuterol is usually used if you have bronchial spasms or an asthma component. Do you use it as an inhaler or nebulized - there might be some adjustments you can make to help.

Early on shortly after having been diagnosed with BE I would have considered myself frail for various reasons. I am now 83 and four months into life. After being diagnosed with BE I started every morning with mild exercising, walking for fifteen minutes, nebulizing and airway clearance methods. I then gained a bit of weight back and at that point and now, weight stable, I would not consider myself frail. I also decided to follow the Acid Reflux diet since NJH is of the belief many of us have Acid Reflux for various reasons.
All the changes I made has made a difference but I believe the extra pounds made the biggest difference. My weight is still about 20 pounds less than what I would like it to be, and possibly ideal, but I feel well.
However, I was not diagnosed with pseudomonas. I was diagnosed with a low load of the intercellular bacteria and put on watchful waiting with the infection. I am still, my decision, on watchful waiting.

I know you might not be in these areas but are you aware of the facilities such as National Jewish Hospital/Clinic in Denver, or NYU Langone and Mt Sinai in NYC ?
Barbara

I use the albuterol twice a day as a nebulizer and as a rescue inhaler for asthma and bronchiectasis.

@carolinediehl I agree that you would do well to at least seek out another opinion. I am a patient of Dr. Hadeh at Cleveland Clinic Florida in Weston. It is now part of the accredited Bronchiectasis and NTM Care Center Network and he is highly experienced in BE and NTM. I don't know who your doctor trained under, but I feel that his dismissive response to you was not only unprofessional, but also disrespectful to his teacher. If it isn't too much trouble for you to get to Cleveland Clinic (you said that it's closer to you than other centers), then I say give it a go. Good luck!!