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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@sueinmn

I will answer with what I did – others may find a different routine that works better.
I used my bronchodilator first – either an inhaler or a neb, depending on how my underlying asthma was behaving. Then I used saline – followed by 5-10 minutes of airway clearance, depending on how much mucus was coming up. Finally, I would use my Tobramycin.
All using the same cup, rinsing between, although as someone else pointed out recently – it's all going the same place, so maybe the rinse isn't necessary.
Sue

Jump to this post

Hello Sue – did you find that inhaling the Toby made you lose your voice? I have lost mine after 5 days of treatment. The doctor suggested I wait a few days and then begin again. Have others of you taking Toby had similar experiences, and is there anything one can do to help with one's voice loss? Should I just expect this to be the case while taking it for the 30 days? I can live with it, but would rather not! Thanks, Pam

REPLY
@pamelasc1

Hello Sue – did you find that inhaling the Toby made you lose your voice? I have lost mine after 5 days of treatment. The doctor suggested I wait a few days and then begin again. Have others of you taking Toby had similar experiences, and is there anything one can do to help with one's voice loss? Should I just expect this to be the case while taking it for the 30 days? I can live with it, but would rather not! Thanks, Pam

Jump to this post

Yes, I lost my voice. My pulmonologist was not very helpful – his advice was to "power through it." His nurse, on the other hand was a gem, and suggested Throat Coat herbal tea by Traditional Medicinals, usually used for colds. I used it before nebbing, and it did help. My voice returned after about a week off the meds. I was fortunate to be retired, so I could rest my vocal cords.
Sue

REPLY

ok – this is helpful. So you voice was lost for the entire time you were on it, right? Pam

REPLY
@pamelasc1

ok – this is helpful. So you voice was lost for the entire time you were on it, right? Pam

Jump to this post

i was able to speak just above a whisper. My then 2yo grandson thought it was funny

REPLY
@pamelasc1

Hello Sue – did you find that inhaling the Toby made you lose your voice? I have lost mine after 5 days of treatment. The doctor suggested I wait a few days and then begin again. Have others of you taking Toby had similar experiences, and is there anything one can do to help with one's voice loss? Should I just expect this to be the case while taking it for the 30 days? I can live with it, but would rather not! Thanks, Pam

Jump to this post

Hi Pam. I've had to do Toby three times over a two year period. I lost my voice about a week into the treatment each time. My pulmonary doc said to use warm salt water gargle. It worked pretty well except the last time. Voice took weeks to return following treatment.
It is odd situation but not the worse thing–like not being able to treat Pseudomonas. I'm not sure mine is cured but suppressing it is not all bad. Sometimes just getting a "break" from the symptoms associated with this nasty bacteria is a good thing. God Bless. Faye

REPLY
@fdixon63

Hi Pam. I've had to do Toby three times over a two year period. I lost my voice about a week into the treatment each time. My pulmonary doc said to use warm salt water gargle. It worked pretty well except the last time. Voice took weeks to return following treatment.
It is odd situation but not the worse thing–like not being able to treat Pseudomonas. I'm not sure mine is cured but suppressing it is not all bad. Sometimes just getting a "break" from the symptoms associated with this nasty bacteria is a good thing. God Bless. Faye

Jump to this post

Faye – this is so helpful – thank you! You are right; losing one's voice is not the worst thing in the world and to know the Toby will beat this bacteria back is what counts. Misery loves company so I thank you and Sue for making me feel not quite so alone in this process! Best, Pam

REPLY
@pamelasc1

In regards to pseudemonas: I cannot take the Levquin due to using it over many years and now I have neurapathy in my feet and toes. I am trying to hear back from as many of you as are able to give me some ideas as to the issues they had, if any, in using the inhaled Tobramycin. One of you said at one point in her treatment, she suddenly could not breathe. That is the scariest thing to me and for that reason, I am very scared to use the Tobramycin. Has anyone else had that reaction? Can you tell me how many days you had to take it for the pseudemonas to clear up? Would the 7% saline help to get rid of it, and has anyone used that with any success? I am now coughing up a good deal and I am going to have to bite the bullet and take something. I see my lung doctor tomorrow. Any information would be greatly appreciated. Pamela

Jump to this post

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

REPLY

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

REPLY

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.

REPLY

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

REPLY

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.

REPLY
@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.

Jump to this post

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

REPLY
Please sign in or register to post a reply.
  Request Appointment