Pulmonologist/Infectious Disease Dr

@bbeers Please read this sentence, all by itself, "I like my Dr. a lot, don't want to make him upset with me. " Now, if you didn't think the painter did a great job on your house, or the mechanic failed to fix a problem with your car, would you say the same thing?

I know all about upsetting pulmonologists - mine "fired" me after I consulted the ID doc in their clinic. Best thing that ever happened as far as my lungs were concerned! The ID doc pointed me to a more proactive pulmonologist, one who worked well him and got my asthma under control.

So perhaps your pulmonologist is nice, but isn't very good at helping people do "watch and wait", which doesn't mean "do nothing." Maybe they are not up-to-date on the best protocols.

That said, knowing what I do after 8 years with this disease, ID docs treat infections, and their tool of choice is antibiotics. They tend to jump to them quicker than may be warranted. They usually send you back to the pulmonologist for other strategies in managing bronchiectasis.

Maybe think about trying this approach with your doctor:
"Dr X, I am very nervous about walking around with this infection in my body. I know it is not always the best thing to do, but I started reading about it on the internet, and I found a site sponsored by Mayo Clinic where people with MAC are talking about how they manage it. They give lots of good references from experts, and talk about doing airway clearance and nebulizing with saline solution to help keep their lungs clear.
Here is something I found there, can we talk about starting me on a plan?"
Then you can hand him this guide, open to page 24, which shows the options for airway clearance.
https://www.ntminfo.org/wp-content/uploads/2019/09/Guide-for-Patients-with-NTM-Infections-2019-09.pdf
There are other references out there, but this is an easy one to discuss quickly.

If he dismisses it, or you, you might need to think about finding someone who will work with you to manage your health - you only get one set of lungs!

This will be hard, and you might want to rehearse it in advance. Or, if you don't think you can do it, do you have a family member or friend who can come along and ask the hard questions? (As assertive as I am, when I had to see a cardiologist about my heart, my daughters came along because they are more knowledgeable than me.)

@sueinmn
Thank you Sue, I was hoping you would see my question and respond. I see him on Wednesday and will use your advice. I have mentioned to him in the past that I joined a MAC group on the Mayo site and he did not seem bothered by it, so hopefully he will be receptive to my questions and concerns. I will let you know how I make out. Oddly enough I tried to see an ID Dr. two years ago, even had a referral from my family Dr. and she wanted to know why I had to see her when I had a Pulmonologist, Was actually questioning my family Dr. about it. I decided I wasn't going to pursue seeing her with that kind of attitude. Barbar

@bbeers Please read this sentence, all by itself, "I like my Dr. a lot, don't want to make him upset with me. " Now, if you didn't think the painter did a great job on your house, or the mechanic failed to fix a problem with your car, would you say the same thing?

I know all about upsetting pulmonologists - mine "fired" me after I consulted the ID doc in their clinic. Best thing that ever happened as far as my lungs were concerned! The ID doc pointed me to a more proactive pulmonologist, one who worked well him and got my asthma under control.

So perhaps your pulmonologist is nice, but isn't very good at helping people do "watch and wait", which doesn't mean "do nothing." Maybe they are not up-to-date on the best protocols.

That said, knowing what I do after 8 years with this disease, ID docs treat infections, and their tool of choice is antibiotics. They tend to jump to them quicker than may be warranted. They usually send you back to the pulmonologist for other strategies in managing bronchiectasis.

Maybe think about trying this approach with your doctor:
"Dr X, I am very nervous about walking around with this infection in my body. I know it is not always the best thing to do, but I started reading about it on the internet, and I found a site sponsored by Mayo Clinic where people with MAC are talking about how they manage it. They give lots of good references from experts, and talk about doing airway clearance and nebulizing with saline solution to help keep their lungs clear.
Here is something I found there, can we talk about starting me on a plan?"
Then you can hand him this guide, open to page 24, which shows the options for airway clearance.
https://www.ntminfo.org/wp-content/uploads/2019/09/Guide-for-Patients-with-NTM-Infections-2019-09.pdf
There are other references out there, but this is an easy one to discuss quickly.

If he dismisses it, or you, you might need to think about finding someone who will work with you to manage your health - you only get one set of lungs!

This will be hard, and you might want to rehearse it in advance. Or, if you don't think you can do it, do you have a family member or friend who can come along and ask the hard questions? (As assertive as I am, when I had to see a cardiologist about my heart, my daughters came along because they are more knowledgeable than me.)

Better news than mine. I went and looks a bit worse. Going to send me to a lung rehab clinic. Not sure what that’s about. Supposed to make lungs stronger.