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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Replies to "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..."

<br><br><br><br><br><br>how did you get it through security?  I will still buy it!<br><br><br> <br><br>

@pamelasc1 Pam, we have 'Trusted Traveler/Global Entry' status .. but even so I think if you just put it in your carry on .. no problem. I always carry an extra battery in a little velvet bag. Actually I also have one in my purse for theatre .. autos .. restaurants .. as well as an extra for travel! Can't be without one! Hugs! Katherine

I had it in my purse and put it on once I was seated in the airport waiting to board. No one ever questioned it.

..ONLY on the airplane will you be questioned. Katherine

<br><br><br><br><br> <br>Hi Pamela, since I was treated at the Mayo for MAC, I can walk WAY more and <br>not get winded. Some days I still do though. But, there was a time I could not <br>walk 15 ft in my house without having to sit down and catch my breath. I can now <br>ride my bike for many miles. I do not cough any more. For years, I coughed <br>constantly. My MAC treatment is different than most. I am being treated with <br>tobramycin, a nebulized medication. It goes directly to the lungs, therefore not <br>having to go through your whole system. Plus, it is easier on the liver. It has <br>made a huge difference in my health.  -Terri M.<br> <br> <br><br>

@windwalker, Terri, thank you for that information! Great info for our pages! It MAY ONLY be effective for your particular mycobacterium .. but I REALLY like the idea of ANY inhaled drug that goes DIRECTLY into your lungs rather than through out the body which can have such affects on our bodies! 'My MAC treatment is different than most. I am being treated with tobramycin, a nebulized medication. It goes directly to the lungs, therefore not having to go through your whole system.

Members: Ask our Pulmonologists IF OUR particular mycobacterium MIGHT respond to nebulized Tobramycin?? It CAN'T possibly hurt just to ask!! When they culture our sputum they can tell if nebulized Tobramycin will be effective for us! Hugs to all! Katherine

Which doc do you see at the Jacksonville Mayo? I see Leventhal. I am interested in asking him about the tobramycin-nebulizer and see if he thinks I could tolerate.

@melrosedecosmo, Rosie .. AND ALL! PLEASE we MUST not jump on the tobramycin-nebulizer bandwagon and drive our Pulmonologists CRAZY! It is just fine to 'mention' the possibility/HOPE that our PARTICULAR mycobacterium MIGHT respond to tobramycin-nebulizer .. BUT we MUST trust our Pulmonologists and remember that after THEY have done THEIR 'due diligence' and done the proper ''susceptibility panel' IN ADVANCE of going on the antibiotic to tell EXACTLY what your MAC will respond to and WHICH of one of the few drugs that will work that particular mycobacterium' .. then it is up to THEM to tell us what will work for us.

As you all know .. I am BIG on being your own best Advocate .. BUT when you finally find a good ID doctor .. trust him. I apologize if I set off a fire storm when I mentioned asking your doctor about tobramycin-nebulizer .. I REALLY should have qualified it. Sorry! Hugs to all! Katherine

<br><br><br><br><br>He is my dr too. I LOVE him!<br> <br><br>

<br><br><br><br><br>I would like to add that the other reason I believe they are treating mine <br>differently is that they might think I don't have time on my side for a long <br>term treatment. They think I may need a lung transplant before long, and could <br>come up suddenly. In the event it comes sooner, then the MAC is knocked <br>down enough for surgery.<br> <br><br>