MAC, Pseudomoas Aeuroginosa, Bronchiectasis

Posted by tamarrillo2 @tamarrillo2, Mar 10, 2018

Hello,
I am new to this site and group. This is my story:
I had surgery for lung cancer in April 2015. My Upper right lobe was removed and sleeve resection due to main tumor being wrapped around and inside of the bronchi leading to right lung. Within a day after surgery, my middle lobe twisted, I had respiratory failure, and developed pneumonia. I was told I had a couple different infections. I was in the hospital 11 days and was tested for all the super bugs. Test for MAC, which I believe I acquired in the hospital, came back positive. I developed Bronchiectasis shortly after. It caused a large cavity in my middle lobe. In 2015, I was back in the hospital three times with pneumonia and a fourth time due to a rib that fractured and displaced while coughing. I had surgery again March 2017. A graft was taken from my pectoral muscle to close up the cavity in my middle lobe and bring more blood supply to the area. Rather unique that could be done. I’ve been on Rifampin, Clarithomycin, and Ethambutal since August 2015. My sputum tests for MAC have come back negative since October 2015. I was to go off the antibiotics in October 2017 but it was decided I would stay on them longer because I had been ill and tested positive for Psuedomonas Aeruginosa. I was told it is colonized in my lung. November 2017 I had 14 days of IV antibiotic treatments. I had sputum tests and the numbers for the Psuedomonas were much less. So the treatment definitely helped but did not eradicate it. I am better but continue to have green sputum and lots of coughing and wheezing. My ID doctor at OHSU ordered sputum test for bacteria’s and that came back as normal pathogens that live in the mouth but said it could be there is something deeper down in my lung and advised giving it a few weeks and let him know how I’m doing. I emailed him today to let him know green sputum continues and am waiting for his response.
My doctor said that people with MAC and/or Bronchiectasis are at higher risk for contracting Psuedomonas Aeruginosa
I am wondering if anyone here has or has had Psedomonas Aeruginosa and what your experience with it has been?

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

@luvocean

I have Bronchiectasis since 2009 and have had Pseudomonus for several years now. I have been treated with IV antibiotics but it just comes back eventually. I am now resistant to Cipro and Astreonam and others. I was then treated with Toby (Tobramycin) in the nebulizer but it was hard to tolerate for me. Most seem to be able to use it though. Now I use nebulizer Amikacin but I can only tolerate it once a day. I am off for 28 days and then back on for 28 more days. So far so good. I have whitish or clear sputum but still a lot of coughing and some wheezing as I also have asthma.

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Hi,
Thank you for writing.  
Sorry to hear the Pseudomonas keeps coming back.  I’m hoping to be treated with something that will get rid of it but the more I read, it doesn’t seem that’s often the case.  I hope to at least get rid if of the green sputum.  I’m waiting to hear back from my ID doctor at OHSU.  I have Asthma as well.  I use a nebulizer twice a day with Budesonide and Ipatropium/Levabuteral. I’m so glad to have found this site.  It’s good to know there are other antibiotics that the Pseudomonas can be treated with.  Take Care,Tammy

REPLY
@pfists

@tamarrillo2
It sounds like you have really been through a lot.
I have had the pseudomonas infection frequently also. I had it in January and then checked sputum in February and it was still there. I did The tobramyacin nibs for two weeks each time. I think it's gone now though. I usually get it once or twice a year. I got it this last time when I came down with the flu.
Some times they will give you cipro with the toby nibs. I also have had the tobrabmyabcin iv's for it also.
I think since its everywhere in water its hard to avoid, I guess the trick is to keep it from colonizing.
Ate you doing three salt nibs also?
When I saw my pulmonologist two weeks ago he stressed that this was the most important thing to keep it from colonizing.
I am also doing two half hours a day of a vest clearance to clear my lungs.
Hoping some of this helps!
Shari

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Thank you.

REPLY
@pfists

@tamarrillo2
It sounds like you have really been through a lot.
I have had the pseudomonas infection frequently also. I had it in January and then checked sputum in February and it was still there. I did The tobramyacin nibs for two weeks each time. I think it's gone now though. I usually get it once or twice a year. I got it this last time when I came down with the flu.
Some times they will give you cipro with the toby nibs. I also have had the tobrabmyabcin iv's for it also.
I think since its everywhere in water its hard to avoid, I guess the trick is to keep it from colonizing.
Ate you doing three salt nibs also?
When I saw my pulmonologist two weeks ago he stressed that this was the most important thing to keep it from colonizing.
I am also doing two half hours a day of a vest clearance to clear my lungs.
Hoping some of this helps!
Shari

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It’s actually nebs which means nebulized. The Tobramycin is a nebulized antibiotic. The other one is nebulized saline. I haven’t tried either one yet.

REPLY
@pfists

@tamarrillo2
It sounds like you have really been through a lot.
I have had the pseudomonas infection frequently also. I had it in January and then checked sputum in February and it was still there. I did The tobramyacin nibs for two weeks each time. I think it's gone now though. I usually get it once or twice a year. I got it this last time when I came down with the flu.
Some times they will give you cipro with the toby nibs. I also have had the tobrabmyabcin iv's for it also.
I think since its everywhere in water its hard to avoid, I guess the trick is to keep it from colonizing.
Ate you doing three salt nibs also?
When I saw my pulmonologist two weeks ago he stressed that this was the most important thing to keep it from colonizing.
I am also doing two half hours a day of a vest clearance to clear my lungs.
Hoping some of this helps!
Shari

Jump to this post

Thank you!

REPLY
@pfists

@tamarrillo2
It sounds like you have really been through a lot.
I have had the pseudomonas infection frequently also. I had it in January and then checked sputum in February and it was still there. I did The tobramyacin nibs for two weeks each time. I think it's gone now though. I usually get it once or twice a year. I got it this last time when I came down with the flu.
Some times they will give you cipro with the toby nibs. I also have had the tobrabmyabcin iv's for it also.
I think since its everywhere in water its hard to avoid, I guess the trick is to keep it from colonizing.
Ate you doing three salt nibs also?
When I saw my pulmonologist two weeks ago he stressed that this was the most important thing to keep it from colonizing.
I am also doing two half hours a day of a vest clearance to clear my lungs.
Hoping some of this helps!
Shari

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Tamarrillo2....condolences over sister in law unexpected death.
Am writing this to comment re use of steroids /prednisone for back and rib pain. Had he suggested going to PT. Steroids are miracle drugs....but the side effects even with short term use are numerous. Tdrell

REPLY
@pfists

@tamarrillo2
It sounds like you have really been through a lot.
I have had the pseudomonas infection frequently also. I had it in January and then checked sputum in February and it was still there. I did The tobramyacin nibs for two weeks each time. I think it's gone now though. I usually get it once or twice a year. I got it this last time when I came down with the flu.
Some times they will give you cipro with the toby nibs. I also have had the tobrabmyabcin iv's for it also.
I think since its everywhere in water its hard to avoid, I guess the trick is to keep it from colonizing.
Ate you doing three salt nibs also?
When I saw my pulmonologist two weeks ago he stressed that this was the most important thing to keep it from colonizing.
I am also doing two half hours a day of a vest clearance to clear my lungs.
Hoping some of this helps!
Shari

Jump to this post

Thank you! I’m off the steroids now. I’m definitely aware of the steroid side effects. I can’t take anti inflammatory drugs so usually end up with short burst of steroids. I had spine. Had more X-rays and turns out I have multiple compression fractures likely due to my having Osteoporosis which will be treated now. I will also request physical therapy.
I just spent a week in the hospital due to the flu. I get the flu shot and wear a mask everywhere so not sure how I got it. While in hospital, I was coughing hard and felt something happen in low abdomen. Doctors thought I pulled a muscle but pain increased & cat Scan done. I had a blood vessel burst & pint of blood bled into muscle and caused hematoma and caused muscle to separate/tear. Pretty painful. Home now and recovering thankfully.

REPLY
@pfists

@tamarrillo2
It sounds like you have really been through a lot.
I have had the pseudomonas infection frequently also. I had it in January and then checked sputum in February and it was still there. I did The tobramyacin nibs for two weeks each time. I think it's gone now though. I usually get it once or twice a year. I got it this last time when I came down with the flu.
Some times they will give you cipro with the toby nibs. I also have had the tobrabmyabcin iv's for it also.
I think since its everywhere in water its hard to avoid, I guess the trick is to keep it from colonizing.
Ate you doing three salt nibs also?
When I saw my pulmonologist two weeks ago he stressed that this was the most important thing to keep it from colonizing.
I am also doing two half hours a day of a vest clearance to clear my lungs.
Hoping some of this helps!
Shari

Jump to this post

@tamarrillo2 Hello Tammy. How are you doing? I was wondering if you got started on the saline nebs? Did your doctor put you on the tobramycin yet?

REPLY
@pfists

@tamarrillo2
It sounds like you have really been through a lot.
I have had the pseudomonas infection frequently also. I had it in January and then checked sputum in February and it was still there. I did The tobramyacin nibs for two weeks each time. I think it's gone now though. I usually get it once or twice a year. I got it this last time when I came down with the flu.
Some times they will give you cipro with the toby nibs. I also have had the tobrabmyabcin iv's for it also.
I think since its everywhere in water its hard to avoid, I guess the trick is to keep it from colonizing.
Ate you doing three salt nibs also?
When I saw my pulmonologist two weeks ago he stressed that this was the most important thing to keep it from colonizing.
I am also doing two half hours a day of a vest clearance to clear my lungs.
Hoping some of this helps!
Shari

Jump to this post

I'm also interested in saline nebs and would be grateful for info. I was diagnosed with bronchiectasis about 8 years ago, after having a lot of CT scans as part of followup for 2 malignancies. Chest CTs showed pulmonary nodules and tree-in-bud. After nonstop coughing last year, I had super D electromagnetic navigation bronchoscopy at UCLA in April 2018 (pretty amazing procedure); they biopsied nodule (not malignant, yay) and did about 20cultures which showed 3 bacteria in lung--MAC, strep and another. A year ago I was incidentally at a place in austria where they had saline chamber and salt sauna. I felt great afterward.

REPLY
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