Have Bronchiectasis, recently diagnosed with pseudomonas

Hi, Pamela-

Just curious to know how your experience with the Tobramycin went. I started my 28 course 2 days ago along with another 14 day course of Cipro that I started a few days before I worked up the nerve to start the Tobramycin. I am so nervous about any kind of inhaled meds as my fist exacerbation was after adding two inhaled meds.

After two days on the Cipro I noticed a definite improvement in my symptoms but now that I have started the Tobramycin I have noticed that I am having increased shortness of breath and my chest feels very irritated. I am hoping things will get better and not worse.

I am hoping you had some success. I have been faithfully nebulizing Levalbuterol and 7% saline twice a day since April and have not been able to keep my symptoms at bay with that alone. I am thinking of having my right middle lobe removed in the spring as it is classified as end-stage bronchiectasis and my doctor at NJH thinks that if I have it removed I will be less likely to have a harborage for all this bacteria that is wreaking havoc in my body.

I am sending prayers and good vibes your way.

-Echo

My thoughts are with you…I hope your health improves!

I had the same reaction to inhaled Toby after the 3rd 28 day round. I switched to the Toby pod inhaler for 2 of my 28 day rounds, then back to the neb for 2 more 28 day rounds. I just received a clear result of no bacteria in my lungs. It took awhile and a lot of hard work, but I'm slowly feeling better. Keeping up with daily clearing routine and praying the infection doesn't return. Good luck and good health to you.

I have broncheactesis MAC, BHD, and pseudomonas, I’m wondering if anyone in this group has BHD, a genetic lung disease Thx

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.

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

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.

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

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?

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.