Hi Katherine
Thanks so much. I got the same nasal spray from Mayo, and it really is great stuff.

I have a very small area of Bronchiectasis they told me. Maybe that's why I have nothing to clear from my lungs. It of course makes me wonder how I got MAC since I don't even take showers, only baths. I guess it doesn't matter.

I will help Heather and the group by doing some advocacy letters soon. I'm back to work now, so have been too busy with that and Holiday prep.

Our Forum is great source of info and encouragement. Thanks for all you do to help people out.

It's a strange disease. I feel like I only started being sick When I started the meds for MAC (big 3). I felt well till I started them on August 1. I've been tired and nauseated since that time. My MAC was found when a nodule was spotted when I had pneumonia, a CT Scan showed a cavity in my upper right lung. One spot! A biopsy done by a bronchoscopy showed MAC.

I think too, that a part of the pflegm and post nasal drip is stress related. The busier and more occupied I am, the less I have problems with it. Do you find stress makes it worse? If so, we all should relax 😉

Again, thanks to all of you and best of the Holidays.

Kay

Hi Kay, I REALLY do try to focus on serenity. There is such a mind/body connection that I don't even think science or we have caught up with yet. Plus for me in my life "denial" really works for me .. I really don't deal with either my or my husband's issues unless they are staring me in the face. I REALLY focus on living my life as happily and healthily as I possibly can .. putting my "energy into what I can control .. and letting go of what I can't control." We all hit hard spots in our lives .. I hit one a few weeks ago .. had to "pull up my big girl panties" .. and plow through it. For me part of it is this Forum .. trying to "play it forward" .. amazing how helping other people truly helps us ourselves!

Yes, it is a strange disease. With the nausea .. have you tried different timing/rotation of the meds? That helped me .. figuring that out .. with/without food .. even just a little snack helped. I also found I just plain had to listen to my body .. found I absolutely needed about 10 hours of sleep. Found I HAD to go to bed earlier .. respect the signals my body was sending me .. just HAD to take care of that one body I was given for this lifetime.

When you go for your next appointment .. REALLY ask about the Bronchiectasis. I did NOT .. I was so focused on the MAC .. I didn't even actually think about or realize the ramifications of the Bronchiectasis. Now I think I am actually suffering quite a bit from the "scarring of the bronchial tubes" .. AND that scarring is NOT going to go away. It was not until about a year ago that I even googled the issue and began to really understand the lifetime ramifications of Bronchiectasis. AND Dr. Aksamit says mine is NOT even very bad! Hmmm.. how on earth do people with a severe case handle the coughing?! Oh well .. attitude of gratitude! Happy Holidays to you also! Hugs! Katherine

Katherine
Actually YOU are the reason I'm doing better with the meds. When I first started them I was flat in bed I was so sick and had terrible insomnia.. You welcomed me to the forum and suggested I change times around on my meds. I talked to Mayo and we changed my Rifampin time, and I was able to sleep and felt better. I've tried a lot of variations on time and taking E and Z with food, but the nausea persists, better some days than others. My doc says no food w R as it decreases absorption.

I have asked about Bronchiecstasis to the 2 pulmonary docs I've seen. They say a very small amount in one lobe. I don't think that causes post nasal drip though which is my main bother except for drug side effects!

Again, thanks, hugs back. Have a great Holiday.
Kay