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@gmamac

@irenea8 i will try to answer all your questions. I was 45 (1998) when I started having respiratory issues. I am now 69. I was not correctly diagnosed until I was 51 and was seen by doctors at Mayo Clinic. I had lots of side effects of the different oral antibiotics I have taken over the years, but tried to tolerate as long as I possibly could as I was desperate to feel better. After the MAC diagnosis and treatment I had a few good years with only the normal colds and other viruses. The first time I had pseudomonas show up in a sputum culture was 2003. After that they would show up about any time I was sick with respiratory issues. I have other health problems but they are not related to my lungs. IV Meropenem was 3 times a day for 28 days and I drove to a regional hospital for those infusions. (I put a lot of miles on my car that month). I had no side effects that I remember and it did help. With Cayston, it seemed to help for about 5 months but gradually became ineffective. After 7 months of it I went back to Tobi and now currently Colistin. I now have gone several months without Pseudomonas showing up. However, there were several times sputum cultures came back with gram negative bacilli. I think my combined health regimen with the Colistin, Advair, nose spray, sodium chloride, airway clearance vest, staying hydrated, knowing my limitations, and regular aerobic exercise has greatly contributed to doing my best to stay healthy as possible with bronchiectasis. It is not easy and really is a full time job and requires full support from friends and family members. I hope I have answered your questions. Remain positive and advocate for yourself!

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Replies to "@irenea8 i will try to answer all your questions. I was 45 (1998) when I started..."

@irenea8 I should also add that no two people with lung disease are alike. Something that works for one, may not work for another. Your best bet is to rely on the expertise of your pulmonologist to work with you to come up with the best treatment plan for you. It is sometimes trial an error, but hopefully in working with a pulmonologist you can come up with what works best for you.

Thank you so much. Just a few remaining if you do not mind. What do you use for a nose spray? And which vest have you found works for you? And if Colistin is not approved how does it get prescribed and what if any side effects with it? One thing i have noticed is that Pseudomonas seems to crop up for people after long standing antibiotics. In my case i either had it all along since they never tested me for it till i suggested it or i got it after being on Augmentin for 4 weeks (that was a long time for my frail body). Thanks for the feedback on the Meropenem. That is encouraging to hear.