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Have Bronchiectasis, recently diagnosed with pseudomonas
MAC & Bronchiectasis | Last Active: Sep 30 4:40pm | Replies (211)Comment receiving replies
Hi, my Dad was diagnosed with Bronchiectasis late 2021 and has been battle Pseudomonas, health history of COPD and asthma. He was given IV cefapime for 28 days a few months ago and started on TOBI 14 days on and 14 days off. We have seen 2 pulmonologists and Infectious Disease who at this point have prescribed nothing but the TOBI. They told him to google the vest, but basically just said if it’s bacterial the Tobramycin will help and otherwise there is nothing they can do. They did give him a Mucinex prescription. He doesn’t cough anything up, but coughs constantly, and worse, he is so short of breath he can hardly even talk. I’m not even sure what my question is, but reading all of these discussions, I feel like we’re not getting treatments that he needs. I’m trying to get him the vest and maybe the Aerobika after all the reading I’ve done. I feel Like his health as plummeted in the last 3 months. Any help or suggestions are appreciated.
Replies to "Hi, my Dad was diagnosed with Bronchiectasis late 2021 and has been battle Pseudomonas, health history..."
Hi there. I am so sorry to hear about your father's lung issues. When I had pseudomonas, I too was put on tobramycin, 28 days on 28 days off for several years. The pseudomonas was gone after the first month, but I was instructed to stay on it for a long period to get it good and gone. If you Google the indications for taking this med; all sites say it needs to be a 28 day course at a time. You may want to look into that and have him ask his dr why he is being prescribed differently. Also, what has helped myself and many others in this group is using the nebulized saline. I use the 7% strength. This saline solution helps to clean out your lungs by thinning the mucous, and irritating your lungs into coughing. The coughing is good because it brings up a bunch of gunk out of your lungs. Is your dad using this already by any chance?
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Please don't give up. Bronchiectasis is an uncommon disease, and it is not unusual to find doctors who know well how to treat COPD and asthma, but are not that familiar with the added burden of this.
It is also possible that, due to your Dad's other lung conditions, and perhaps his general health, that other antibiotic regimens are not an option.
Have you considered seeking care for him at a large multi-disciplinary facility that specializes in complex cases. Two that immediately come to mind are Mayo (seek appointments here: http://mayocl.in/1mtmR63 and National Jewish Health in Denver.
Does he have access to a large facility near home?
Sue