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MAC & Bronchiectasis | Last Active: 1 day ago | Replies (23)
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Did you do a course of IV? And if so which one? Do you find that the Albuterol makes a difference in your ability to expel the mucus? I read somewhere that Pulmozyme is not recommended for Non Cystic Fibrosis Bronchiectasis. But what has your experience been with using it? Also Pulmozyme and Cayston are not covered by medicare unless you have CF and they are super expensive. Do you have CF? Do you use Toby and Cayston?? Or just one of them now?
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I am immediately hospitalized with an infection and put on IV antibiotics. They use something that was effective for the last infection until the sputum culture results come back. Use any and all inhalation drugs you can. They all help. I have heard that pulmozyme is not useful with NCFBE but my doctor who takes care of me when I am hospitalized suggested I use it. I get it paid for by the company who markets it. Anyone can apply. I pay nothing. Cayston is now covered for NCFBE! I was approved right away! I am on Medicare/Medicaid. I do NOT have CF. Yes, I will be inhaling tobi one month and cayston the alternating month for the rest of my life. Use any and all meds you can. I walk 5000 steps a day. lift light weights, do yoga and kung fu. It is important for us to be in top shape. Helps you breathe, helps you fight against infections. I have pseudomonas which is not curable so I also do not drink water from faucets. I use a .2 micron filtration Lifestraw pitcher. I do not take a shower. It's dangerous due to aerosolizing pseudomonas. My faucets have the aerosolizers taken off. I bathe standing at the kitchen sink with a wash cloth. I wash my hair in the kitchen sink. I boil my neb cups after each use for 12 minutes every. time. I. use. them. which is 3 times a day. This is my life now.