1. < MAC & Bronchiectasis

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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 13, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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

@megan123 Hi Jenn. Yes, the salt nebs are 7° sodoum choride.

REPLY
tamarrillo2 | @tamarrillo2 | Mar 14, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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

Hi Shari,
My appt with doctor went well. He always gives me good advice. He is my ID doctor in town and my main ones are at OHSU in Portland. He mentioned the nebulized Tobramycin good be a good thing and the saline nebs. I need to go see my Pulmonologist regarding the Saline Nebs and ID doctors want him to follow the Bronchiectasis. I’m waiting to hear back from ID doctor in Portland. I’ve been on some Prednisone for some moderate back and rib pain I’ve been having. ID doc I saw yesterday said even just short term on it - couple weeks- lowers the immune system.
I will get back to you regarding the herbs.
My husband’s baby sister, 51yrs, died Friday quite unexpectedly. She died in her sleep but we don’t know why yet. Autopsy being done. So a lot going on.
I will email you soon.
Take Care,
Tammy

REPLY
Jennifer | @megan123 | Mar 14, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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

Tks✌️

REPLY
egayle187 | @egayle187 | Mar 15, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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

Our condolences for your loss. 51 seems so young. I hope you get some answers soon.

REPLY
cmcclure | @cmcclure | Mar 15, 2018

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing, ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself… It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and anyone that can point me in the right direction it will be sincerely appreciated.

REPLY
pfists | @pfists | Mar 15, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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
So very sorry for your loss.
Please take care
Shari

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 16, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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 My condolensces to you & your family, Tammy.

REPLY
tamarrillo2 | @tamarrillo2 | Mar 16, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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
luvocean | @luvocean | Mar 18, 2018

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.

REPLY
1 reply
luvocean | @luvocean | Mar 18, 2018
In reply to @pfists "@tamarrillo2 It sounds like you have really been through a lot. I have had the pseudomonas..." + (show)
@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 haven't been on this thread in awhile. I would like to know what the Tobramycin nibs are and also the salt nibs. Thank you.

REPLY
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