1. < MAC & Bronchiectasis

Confused about saline

Posted by AZ @equanimous, Apr 11, 2023

I was diagnosed with bronchiectasis and MAC and am relatively new to this whole battle. I have a constant cough which is much worse at night but no shortness of breath. The mucus I cough up is pretty thin. I have ordered a wedge to elevate my upper body at night and am praying it will help. I was also told I am allergic to dust mites. My nasal drip is pretty bad at times. I am taking an antihistamine.

I repeatedly see mention of 7% saline nebulizer treatment. Does this help with controlling the MAC bacteria and curbing cough? I have asked my pulmonologist about saline with this response: "I don't generally use 7% saline. I use mucomsyt mixed with albuterol to thin the mucus, along with the vest. If this does not work, then I use dornase. "
I am not asking for medical advise but am curious to get your take on this.

At the present time I am using the compression vest 2x per day.
I have a Rx for Albuterol Sulfate, 0.083% for nebulizer. A respiratory therapist (who taught me how to use the compression vest) who said it would not help with cough and she did not think it was necessary.

I am confused and trying to keep the faith that I will find what works. I appreciate your feedback.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

blm1007blm1007 | @blm1007blm1007 | Sep 17 6:45am
In reply to @sueinmn "My new pulmonologist mentioned it today. The doc, well-known among the BE/NTM experts is already there...." + (show)
@sueinmn

My new pulmonologist mentioned it today. The doc, well-known among the BE/NTM experts is already there. We had co many conversations I lost track of them all.
But take heart everyone, those trained at Mayo, NJH and other great centers are spreading out. You just have to do some searching. There is a lot to be said for being treated close to home. Remember, you will have this disease for the rest of your life, and eventually you will be glad you don't have to drive for two days, or take a flight, and stay in a hotel to get good care.

Jump to this post

Sorry Sue have to ask. Were you referring to Baylor having a doctor " well-known among the BE/NTM experts is already there" as being at Baylor? Do you know that doctors name or is that one of the "lost track" pieces, which I sure do understand how that happens with so much information received, so much information changing etc. and time given to all in life.
Yes, my concerns have been how long can I travel by myself from OKC to Plano/Tyler at 81 and 11 months of age. I know, more than likely, not that much longer. no matter how stable my MAI/BE is. I am still working on finding the best doctor for me, pulmonologist, here in OKC. I have an appointment set up with a pulmonologist after the Tyler tests and visit with a pulmonologist at OU associated with OU Universtiy Medical School and Hospital system. One reason also tying the doctor at OU is that there is a good ID doctor at OU who may or may not prefer to take patients out of the OU system. I tried to see the ID doctor and he suggested I look for one in the other health system I was in! (Not enough doctors today available for all those needing them.)
Thanks, Barbara

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 17 10:32am
In reply to @blm1007blm1007 "Sorry Sue have to ask. Were you referring to Baylor having a doctor " well-known among..." + (show)
@blm1007blm1007

Sorry Sue have to ask. Were you referring to Baylor having a doctor " well-known among the BE/NTM experts is already there" as being at Baylor? Do you know that doctors name or is that one of the "lost track" pieces, which I sure do understand how that happens with so much information received, so much information changing etc. and time given to all in life.
Yes, my concerns have been how long can I travel by myself from OKC to Plano/Tyler at 81 and 11 months of age. I know, more than likely, not that much longer. no matter how stable my MAI/BE is. I am still working on finding the best doctor for me, pulmonologist, here in OKC. I have an appointment set up with a pulmonologist after the Tyler tests and visit with a pulmonologist at OU associated with OU Universtiy Medical School and Hospital system. One reason also tying the doctor at OU is that there is a good ID doctor at OU who may or may not prefer to take patients out of the OU system. I tried to see the ID doctor and he suggested I look for one in the other health system I was in! (Not enough doctors today available for all those needing them.)
Thanks, Barbara

Jump to this post

Barbara - Once you get to Tyler, I suggest you get a referral to someone in OKC from them. With a referral from another University, I bet you can get seen at OU. It takes persistence, and someone willing to take a minute.
Good luck!
The Baylor doc's name is one of the "lost pieces" from our visit yesterday. I'll be going back to our complete visit notes when they are finalized - she uses a scribe to capture everything, so it may be in there.
Sue

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Sep 17 4:42pm
In reply to @sueinmn "Barbara - Once you get to Tyler, I suggest you get a referral to someone in..." + (show)
@sueinmn

Barbara - Once you get to Tyler, I suggest you get a referral to someone in OKC from them. With a referral from another University, I bet you can get seen at OU. It takes persistence, and someone willing to take a minute.
Good luck!
The Baylor doc's name is one of the "lost pieces" from our visit yesterday. I'll be going back to our complete visit notes when they are finalized - she uses a scribe to capture everything, so it may be in there.
Sue

Jump to this post

Yes, I should have thought of that....so again....thanks Sue. I will ask in Tyler this October if they know of a pulmonologist or possible BE specialist at OU.
Barbara

REPLY
View MoreView Less
Please sign in or register to post a reply.