Newly diagnosed, scared. Waiting for pathology reports.

Posted by healthybon @healthybon, Mar 5, 2023

Hi, I am very scared. I do not tolerate even one antibiotic well. My pulmonary is sending me to an infectious disease doctor . Please help.

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irenea8 | @irenea8 | Mar 7, 2023

In reply to @healthybon "Thank you for the good info. I requested a saline script from my dr today." + (show)

You should make sure your Dr even recommends saline nebulization for your specific situation. I was just saying if it is recommended it is very helpful to do it. So be sure to check with them. Take good care and try not to worry.

healthybon | @healthybon | Mar 7, 2023

Irene. Is this a good one to get? Monaghan Aerobika Oscillating Positive Expiratory Pressure (OPEP) Therapy System

healthybon | @healthybon | Mar 7, 2023

In reply to @irenea8 "Nebulzing with 7% saline will help loosen and bring up mucus which is so important. Think..." + (show)

Irene…I requested that my pulmonary call in a script for the 7% saline to be used in a nebulizer! His response was “just use the flutter valve, the saline could make things worse.”
I have read in this support group that everyone uses the saline and also videos on UTUBE…..etc. I’m confused.
What is your opinion on this?

irenea8 | @irenea8 | Mar 7, 2023

In reply to @healthybon "Irene…I requested that my pulmonary call in a script for the 7% saline to be used..." + (show)

Next time you have an appointment with him, ask for more information as to why it is not recommended in your case. As I said it might not be right for your stage of things. Maybe you just do not have enough mucus since you do not have Bronchiectasis and he does not want to irritate your airways. Also if your Pulmo is not familiar enough with MAC then you might try to find a Dr that is more specialized. Does he have other patients that he does prescribe saline for? Or is he just against it in general? I would want to know that if it were me. He probably knows best? The Aerobika is excellent for flutter device. I think it is the best one to use.

healthybon | @healthybon | Mar 7, 2023

In reply to @irenea8 "Next time you have an appointment with him, ask for more information as to why it..." + (show)

He’s sending me to an infectious disease Dr…next month….thank you for answering…it helps a lot.

irenea8 | @irenea8 | Mar 7, 2023

In reply to @healthybon "He’s sending me to an infectious disease Dr…next month….thank you for answering…it helps a lot." + (show)

I am not sure of this so others may chime in. But don't most people with MAC have both infectious disease Dr plus a pulmonologist who preferably specializes in it or is very familiar with it? Where are you located by the way?

healthybon | @healthybon | Mar 7, 2023

In reply to @irenea8 "I am not sure of this so others may chime in. But don't most people with..." + (show)

Blue Ridge Georgia..not many resources here. Also, have Aetna Medicare advantage plan

healthybon | @healthybon | Mar 7, 2023

In reply to @irenea8 "I am not sure of this so others may chime in. But don't most people with..." + (show)

I’m scared to death….

irenea8 | @irenea8 | Mar 7, 2023

In reply to @healthybon "Blue Ridge Georgia..not many resources here. Also, have Aetna Medicare advantage plan" + (show)

Check out these links. The first one gives you more general information on MAC. The second one is a map of medical institutions that specialize in it. You are not too far from Mayo in FL right? If necessary you could consider it. But you might see what the infectious disease Dr says first.
https://www.bronchiectasisandntminitiative.org/NTM-Lung-Disease/NTM-Resources/What-Is-NTM
https://www.bronchiectasisandntminitiative.org/Research/Registry/Bronchiectasis-and-NTM-Research-Registry#map

irenea8 | @irenea8 | Mar 7, 2023

In reply to @healthybon "I’m scared to death…." + (show)

I do not really know your situation but you do not need to be so scared. You do not have Bronchiectasis which is huge. If you cannot tolerate antibiotics as you mentioned then discuss that with the infectious disease Dr. and ask about any other possible options. And if you feel you need someone else then try Mayo or another specialist on the east coast. I have had Bronchiectasis for over 20 years (and chronic Pseudomonas). But have learned how to deal with it as best I can. Your situation may not be as bad as you think. Take heart. Find out more. Ask a lot of questions when you see the Dr! Hope you find good Drs.