Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

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@sueinmn

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

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He lives near Oklahoma City so I think there are physicians available with experience, we just haven’t found one yet. Thank you for the feedback, He’s feeling hopeless.

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@wingz81

He lives near Oklahoma City so I think there are physicians available with experience, we just haven’t found one yet. Thank you for the feedback, He’s feeling hopeless.

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I remember that feeling well – it took a long time for me to get diagnosed, then all the first doctor offered was the "cookie cutter" approach to treatment. He actually "fired" me as a patient because I had the nerve to see and ID specialist when I wasn't improving. It would probably be well worth the time to find an experienced specialist…
First, let's ask the Connect community – Does anyone with bronchiectasis have a good pulmonology or ID doc in the Oklahoma City area?
The second approach is for you to get on the phone and start calling pulmonologists near him and asking specifically if they treat patients with COPD + asthma + bronchiectasis + pseudomonas regularly, or can recommend someone who does. Oklahoma University appears to have an extensive Pulmonology department – that's where I would start.
Are you able to help your Dad with finding a doctor?
Sue

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@wingz81

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.

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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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@windwalker

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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Thank you for responding. No he has only been told to use mucinex and I just learned about the 7% saline today. As of now he has never been able to cough anything up so the Tobramycin probably isn’t able to do it’s job as well. I will Reach out to his doctor tomorrow.

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@sueinmn

I remember that feeling well – it took a long time for me to get diagnosed, then all the first doctor offered was the "cookie cutter" approach to treatment. He actually "fired" me as a patient because I had the nerve to see and ID specialist when I wasn't improving. It would probably be well worth the time to find an experienced specialist…
First, let's ask the Connect community – Does anyone with bronchiectasis have a good pulmonology or ID doc in the Oklahoma City area?
The second approach is for you to get on the phone and start calling pulmonologists near him and asking specifically if they treat patients with COPD + asthma + bronchiectasis + pseudomonas regularly, or can recommend someone who does. Oklahoma University appears to have an extensive Pulmonology department – that's where I would start.
Are you able to help your Dad with finding a doctor?
Sue

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Hello to this wonderful group, I have been following for awhile and also am at at a loss for treatment for my Mom. Currently she sees a pulmonologist and ID at St.Luke’s Hospital in Milwaukee WI. She is on Ethambutol, Azithromycin, recently added Clofazimine and uses Amikacin in a nebulizer. She couldn’t tolerate the 7% saline, it hurt her throat. Also Rifampin interfered with Coumadin she takes. Horrible reaction. She takes that preventively because she used to go into Afib but hasn’t for many years.
She has no appetite, is weak and short of breath and coughs a lot.
She was diagnosed with Bronchiectasis 5 years ago , her recent CT scan shows no changes in the last year.
She has a strong good heart and was physically fit. An active vibrant woman even in her 80’s. Never smoked and was super health oriented. We just don’t know if there is better treatment. The docs she goes to have a few MAC patients but are not specialists. Should we try Mayo do you think? I live in the Chicago area and do not know anyone here. It’s been so hard and very sad. If anyone has any suggestions , thank you.

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@wingz81

Thank you for responding. No he has only been told to use mucinex and I just learned about the 7% saline today. As of now he has never been able to cough anything up so the Tobramycin probably isn’t able to do it’s job as well. I will Reach out to his doctor tomorrow.

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Just wanted tot say that the tobramycin isn't dependent on the coughing up mucous to do it's work. It is an antibiotic that needs to stay in the lung to work. Back when I was on it, I'd nebulize albuterol to open up my airways, then, nebulize 7% saline to clear the lungs out. After all coughing up phlegm was done, I'd then do the inhaled tobramycin. That is the correct order to do these nebulized meds.

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@windwalker

Just wanted tot say that the tobramycin isn't dependent on the coughing up mucous to do it's work. It is an antibiotic that needs to stay in the lung to work. Back when I was on it, I'd nebulize albuterol to open up my airways, then, nebulize 7% saline to clear the lungs out. After all coughing up phlegm was done, I'd then do the inhaled tobramycin. That is the correct order to do these nebulized meds.

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Good info Terri. I've had Pseudomonas off and on for 3 years. I like your thinking about how to approach the treatment. I've never been told about doing treatment in steps as you prescribed. Makes sense. Will give that a try. It is frustrating that it never seems to "kick" Pseudo to the curb forever. I made it almost a year this last time before my symptoms occurred again. At the moment my last sputum 2 months ago showed abundant Pseudomonas A. but he does not treat unless I'm symptomatic. He has indicated that if I need inhaled antibiotics (Tobramycin) he does 2 weeks on and 2 weeks off. My previous pulmonary doc did 28 days–one and done. He did not say to do the 7% while on Toby. Also no vest usage when on Toby. Thankfully I'm feeling fine–just staying with airway clearance (7%) twice daily. Things could be a lot worse. Blessings to all.

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