@irenea8 The nose spray is a compound drug that I get from the Mayo Clinic Pharmacy. It is mometasone 0.33%, ipratropium 0.02%, diphenhydramine 0.33%. (2 sprays each nostril twice a day). It really stops my constant runny nose. I used Flonase for several years but this works much better. The vest I use is from Hill-Rom. I have had one called The Vest, which in my opinion didn’t work as well. It had a battery pack that allowed you not to be hooked up to a machine, but I have found I don’t want to walk around while doing this. The Hill-Rom is what the Mayo Clinic hospital used when I was admitted there four years ago. I liked it much better so I was able to get it. It comes with a wrap, but I like the jacket much better. I use it 2 times daily for 20 minutes each time at 10 hz (which can be set higher or lower).
As far as the Colistin being unapproved, I don’t have an answer. It was prescribed and Mayo Clinic pharmacy fills it and mails it to me. It is expensive but not close to the cost of Cayston. I have not experienced any side effects in the 11 months I have used it. It is quite time consuming to get it ready to be nebulized. It comes in a dry powder form in a vial that has to be mixed with sterile water drawn out with a needle and syringe. Once that is mixed you draw out from that mixture, and place in your nebulizer cup. You then add .09% sodium chloride to that and nebulize. It took me awhile to be able to do all that…. I kept a notecard with the steps which helped. With pseudomonas, it’s my understanding that you can have it in your lungs, it may not cause any symptoms and it may not show up in a sputum culture. It doesn’t mean it’s not there, it just does not outnumber other bacteria and may not cause any symptoms. It might show up as a gram negative bacillus. (also my understanding). I still am going to a pulmonologist at Mayo Clinic and live 9 hours away. I’m not sure about the rules on this site about mentioning physicians’ names, but I will direct you to a website where you will see that he is currently co-chair of the international planning committee for World Bronchiectasis Day. (Medical Director of Bronchiectasis and NTM 360 at the COPD Foundation). Or just Google search, World Bronchiectasis Day. The website may also be helpful in finding others with similar health issues. It is: broncandntm360.org Don’t give up on finding answers, you must advocate for yourself. It sounds like your current pulmonologist is trying to help. But since dealing with my issues for so long and not having answers, I didn’t hesitate to seek out other physicians to help sort through it all. I have never once regretted making the trip to Mayo, even four times a year at the beginning. But follow your heart on this decision, you are the only one that knows how you feel. Good luck, and I hope you find the answers you need.