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.

tamarrillo2 | @tamarrillo2 | Mar 10, 2018

I came back on the site and researched Psuedomonas Aeruginosa. I see several of you have it as well. Thankful for all the good information. It’s definitely frustrating trying to get rid of the green gunk. I use nebulizer 2 x day and Aerobika.

REPLY
Jamie Olson | @jamienolson | Mar 10, 2018

Hello, @tamarrillo2! Welcome to Mayo Clinic Connect! You will find the MAC group to be helpful and full of information. I would like to introduce you to @windwalker, the mentor for the MAC group, who also has experience with Psuedomonas Aeruginosa.

Explore the other conversations and take some notes while we wait for other members to join your conversation.

REPLY
1 reply
tamarrillo2 | @tamarrillo2 | Mar 10, 2018
In reply to @jamienolson "Hello, @tamarrillo2! Welcome to Mayo Clinic Connect! You will find the MAC group to be helpful..." + (show)
@jamienolson

Hello, @tamarrillo2! Welcome to Mayo Clinic Connect! You will find the MAC group to be helpful and full of information. I would like to introduce you to @windwalker, the mentor for the MAC group, who also has experience with Psuedomonas Aeruginosa.

Explore the other conversations and take some notes while we wait for other members to join your conversation.

Jump to this post

Hello and Thank you!

REPLY
pfists | @pfists | Mar 11, 2018

@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

REPLY
21 replies
tamarrillo2 | @tamarrillo2 | Mar 11, 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,
Thanks so much for your reply! 🙂
I have read some of your posts and happy to chat with you.
I have been feeling really frustrated over the constant green sputum and coughing. I think my ID docs need to do something more. My main ID doc is at OHSU in Portland, Oregon. It is said that he is one of the leading ID docs in the world. But he has another doc under him and that is who sees me recently although he does confer with the other doc. I think they need to do something more. I sent the ID doc an email and hope to hear back from him tomorrow. One issue is I am still on the three antibiotics for the MAC and some of the others antibiotics that could be used for Pseudomas can’t be taken with some of the MAC antibiotics. The IV treatments I had in November was with a drug called Cefepime (hope I have name right). It was 2 Infusions a day for 24 days straight so pretty intense and kicked my butt. It definitely helped but the Pseudomonas is still detectable but at much lower number - well that was as of last sputum test a month ago. When I was diagnosed with the Pseudomonas, I was told it is colonized in my right lung. I see another ID doc locally in Keizer, Oregon and have appt with him on Tuesday. Hopefully he can help get something more going or advise me. I’ve never done salt nebs or been told too. Although one of ID docs asked if I had done so. I am on nebulizer meds two x day for my Asthma and that helps greatly and using the Aerobika. I am going to ask about bronchoscope for flushing things out. The ID docs at OHSU suggested seeing my Pulmonologist to have him involved in treating the Bronchiectasis so I need to make an appt with him. They did mention a vest to me but said talk to Pulmonologist for that and if he thinks I need it.
I haven’t heard of Tobramycin before. I will read about it on the Internet. I’m not familiar with herbs you mentioned in other posts so will check that out too.
Thank you!
Tammy 🙂

REPLY
Jennifer | @megan123 | Mar 11, 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

What is a salt nib....is this saline 7 percent, nebulized????

REPLY
Jane S. Brown | @macjane | Mar 12, 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

My Infectious Diseases doctor made it impossible to stay with her. Prescribed one medicine that has been on my list of meds I could not take. This happened not once but twice. Does anyone in Michigan have an ID doctor who has worked with them? I cannot work with an ID at the University of Michigan. This was a fairly young woman doctor who was unreachable until my Pulmonary Doc called her himself after my blood pressure went sky high with a cluster headache accompanying my feelings similar to the flu. I did not have the flu at that time. I spent too much time at the Emergency Department. Also, very discouraged by what we call "house doctors" with little experience with MAC. Some house doctors give little or no recognition to MAC. I also am coming down on meds with horrific side-effects. It seems like this group knows more than some of the doctors I have experienced at a hospital in the Detroit/Ann Arbor area. We use a major prescription company that in the past has been shocked by meds I never should have been on.

REPLY
tamarrillo2 | @tamarrillo2 | Mar 12, 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. It’s nebulized saline. I myself haven’t used it so I don’t know the percentage.

REPLY
pfists | @pfists | Mar 12, 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
Hi Tammy
I think checking with your Dr on getting some saline nebs would be a great idea, you could just as them to your asthma nibs. The salt helps cleanse your lungs its a disinfectant to them, and it also helps you to be able to cough by loosing the phlegm.
Also the bronchial scope washes are a good idea. My Dr is all in for me doing everything we can to keep from doing the Mac antibiotics and so far is working.

Usually they run a test to see what antibiotics work on your specific bacteria.
So I'm sure they have most likely done that for your pseudomonas. My test said the toby would work.
How much longer are you going to be on the antibiotics for the Mac would be nice to get that done.
If you want more info on the herbs pm me I believe they have greatly helped me with the mycobacterria abcessus.
Hope your have a good visit with your Dr and can come up with a plan!!
Take care
Shari

REPLY
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

@macjane Hello Jane. Yeah, it is shocking to me how many pulmonolgists know very little if anything about MAC. It is very important that you find a doctor that knows a great deal about this. Usually, the non-profit research medical institutes are the best sources for medical care. They are generally cutting edge and genuinely want to get answers.

REPLY
View MoreView Less
Please sign in or register to post a reply.