<br><br><br><br><br>I also want to add; that medication is horrendously expensive. Without <br>secondary insurance, the co-pay is $500.00.<br> <br><br>

<br><br><br><br><br>Hi Pamela, it stinks, but we all have something to mourn concerning this <br>disease.<br> <br><br>

<br><br><br><br><br>Hello Pamela, I am catching up on older posts; so excuse me if I am <br>repeating anybody. It sounds like you would benefit from nighttime oxygen when <br>you visit them. You can rent a portable oxygen concentrator online. I would <br>recommend the Sequel Eclipse 3 because it is the only one with a continuous flow <br>option. you can have it delivered right to their house. Of course, RUN IT PAST <br>YOUR DR FIRST.<br> <br><br>

this is a reply to "windwalker"  who mentioned the use of a rented portable oxygen device when I am at higher altitudes.  Can you tell me how it works? Is it a mask you put over your face and sleep with all night?  I will talk to my doctor about it and I thank you VERY much for bringing this to my attention.  Pamela    

this is in reply to Terri M. who wrote about being able to walk farther eventually, but  using nebulized tobramyscin.  Can you answer a few questions for me:I understand you are using the tobramycin now, but did you first begin with the 18 month regimen of the 3 basic drugs?  How long did you take those, before going to the tobramycin?  Will you be using it now for the rest of your life?  Did the MAC return at any point after that initial treatment?  If you have been stable, how long have you been stable with no coughing?   Thank you!  Pamela   

<br><br><br><br><br>The unit I suggested for rental is the size of a carry-on of piece of <br>luggage and weighs a whole lot less than the full size unit people have in their <br>homes. You use a nose canula just like you would on the full size house models. <br>If you google the model I recommended plus add the word 'rental'; links should <br>pop up. You can type in 'oxygen rental' and should get there as well. If you <br>have trouble finding one, let me know and I will find it for you. I own a Sequel <br>myself for travel. I need it for over nights and higher altitudes when flying. <br><br> <br><br>

just got this reply almost simultaneously to sending the question again - thank you so much!  And sorry for the repeat questions.  Pamela   

Terri, really good information for our Forum .. thank you! Hugs! Katherine

This is Pamela - several of you have mentioned follow-up sputum tests which I get the impression should be done on a regular basis once one has completed the 18 month regimen of antibiotics.  I do understand the reason for doing this as we never get rid of the MAC but only get it stable.  For those of you who are no longer on antibiotics, how often do you get the sputum tests?  I have bronchiectasis as well, so clearly the sputum from that (which I will have for life) could continue to become a breeding ground for the MAC, so it makes sense that I should have the sputum tests for life also - right?  And if so, is every 6 months reasonable, or should it be more often?   Pamela   

I asked my ID drs about followup after I'm able to stop the 3 drugs and they said only if I felt the symptoms again. But knowing my other medical issues now they might change their mind. I know I'll be asking again when it gets closer to me being off the 3 drugs.