1. < MAC & Bronchiectasis

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.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 14, 2023
In reply to @pegs "Hello, I'm new on the forum but already learned so much from everyone. Thank you so..." + (show)
@pegs

Hello, I'm new on the forum but already learned so much from everyone. Thank you so much.
I was diagnosed with Pseudomonas a. Sept. 21, 2023 along with Aspergillus fungal infection. I've been on IV antibiotics for almost 2 weeks now and starting to feel somewhat normal again. I start inhaled Tobramycin this week, (1 week on, 3 weeks off). Hoping it will help as well. I had MAC and Nocardia infections 9 years ago successfully treated over 18 months with Ethambutol and Rifampin plus IV infusions for 4 months. I feel so grateful to be here today at 80 years old and was pretty good shape until June this year when the pseudomonas hit me big time. (took forever to get diagnosed it seemed). After reading all the good info here, I also asked my doctor about 7% saline which I am doing daily now and it really helped to bring up lots of sputum that I normally cannot cough up. Since I've been on the IV I don't seem to bring up much sputum now, and wondering if that is a good sign or what? Also the saline chokes me so bad I'm wondering if it is too strong and 3% would be better? Any comments would be appreciated.

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Welcome to Mayo Connect and our support group for people living with all of these challenging lung conditions.

Where do we start? I'm so glad the meds are helping with you Pseudomonas & Aspergillus. Both of these infections do tend to cause an increase in mucus, so I am not surprised that you are seeing a decrease as the antibiotics begin to kick out the bugs.

Yes, 7% saline is not for everyone- are you using it more than once a day? If so maybe you can reduce it to once, or alternate 7% and 3%. The 7% strength is important if you have MAC because it suppresses growth of that bacteria. But if 3% works to clear your lungs, and you don't have MAC, perhaps your doc will agree that the lower does is just as good for you.

I'm glad they are doing the Tobramycin slowly for you - that was the hardest part of the therapy when I had Pseudomonas 6 years ago.
Can you call the doc about reducing your saline use?
Sue

REPLY
pegs | @pegs | Oct 14, 2023

I’ll try the 3% or alternate but first speak to doctor. Will let you know how the Tobramycin goes. Thanks for all your help.

REPLY
irenea8 | @irenea8 | Oct 15, 2023
In reply to @pegs "Hello, I'm new on the forum but already learned so much from everyone. Thank you so..." + (show)
@pegs

Hello, I'm new on the forum but already learned so much from everyone. Thank you so much.
I was diagnosed with Pseudomonas a. Sept. 21, 2023 along with Aspergillus fungal infection. I've been on IV antibiotics for almost 2 weeks now and starting to feel somewhat normal again. I start inhaled Tobramycin this week, (1 week on, 3 weeks off). Hoping it will help as well. I had MAC and Nocardia infections 9 years ago successfully treated over 18 months with Ethambutol and Rifampin plus IV infusions for 4 months. I feel so grateful to be here today at 80 years old and was pretty good shape until June this year when the pseudomonas hit me big time. (took forever to get diagnosed it seemed). After reading all the good info here, I also asked my doctor about 7% saline which I am doing daily now and it really helped to bring up lots of sputum that I normally cannot cough up. Since I've been on the IV I don't seem to bring up much sputum now, and wondering if that is a good sign or what? Also the saline chokes me so bad I'm wondering if it is too strong and 3% would be better? Any comments would be appreciated.

Jump to this post

which IV antibiotic are you on Pegs? How long are you supposed to stay on it? 1 week on and 3 off of Toby is unusual. I wonder if that is a new protocol? Usually it is 2 on 2 off or 28 on and 28 off. Not bringing up as much sputum is probably a good sign the IV is working. Perhaps the stronger saline along with Toby is too much and you might try the 3% while on Toby? Just a thought. No doubt your Dr will have input on that.

REPLY
1 reply
pegs | @pegs | Oct 15, 2023
In reply to @irenea8 "which IV antibiotic are you on Pegs? How long are you supposed to stay on it?..." + (show)
@irenea8

which IV antibiotic are you on Pegs? How long are you supposed to stay on it? 1 week on and 3 off of Toby is unusual. I wonder if that is a new protocol? Usually it is 2 on 2 off or 28 on and 28 off. Not bringing up as much sputum is probably a good sign the IV is working. Perhaps the stronger saline along with Toby is too much and you might try the 3% while on Toby? Just a thought. No doubt your Dr will have input on that.

Jump to this post

Hi. I’m on Meropenen, every 8 hours for 2 weeks. I have just 3 more days then start the Toby. I am intolerant to many oral antibiotics. Don’t know what to expect w/Toby. Yes it’s unusual I guess to be on 1 week on 3 weeks off. I’ll find out more this week why. It’s hard to communicate with my doctors. Thanks for your info. I just hope it goes well.

REPLY
2 replies
irenea8 | @irenea8 | Oct 15, 2023
In reply to @pegs "Hi. I’m on Meropenen, every 8 hours for 2 weeks. I have just 3 more days..." + (show)
@pegs

Hi. I’m on Meropenen, every 8 hours for 2 weeks. I have just 3 more days then start the Toby. I am intolerant to many oral antibiotics. Don’t know what to expect w/Toby. Yes it’s unusual I guess to be on 1 week on 3 weeks off. I’ll find out more this week why. It’s hard to communicate with my doctors. Thanks for your info. I just hope it goes well.

Jump to this post

I keep hearing of people on this forum who were given Meropenem for their Pseudo instead of all the other IV options. How are you tolerating it? Any side effects? Was it a slow drip every 8 hours? Some people do it twice a day instead. Did you have to go into hospital to get set up and for how many days? Then home with a stent? Sorry for all the questions but I am very interested to know since I have very chronic Pseudo that needs treatment. I would not tolerate oral options and did not tolerate Toby but you might do fine with the one week on and three off. Yes please keep us posted!

REPLY
1 reply
pegs | @pegs | Oct 15, 2023
In reply to @irenea8 "I keep hearing of people on this forum who were given Meropenem for their Pseudo instead..." + (show)
@irenea8

I keep hearing of people on this forum who were given Meropenem for their Pseudo instead of all the other IV options. How are you tolerating it? Any side effects? Was it a slow drip every 8 hours? Some people do it twice a day instead. Did you have to go into hospital to get set up and for how many days? Then home with a stent? Sorry for all the questions but I am very interested to know since I have very chronic Pseudo that needs treatment. I would not tolerate oral options and did not tolerate Toby but you might do fine with the one week on and three off. Yes please keep us posted!

Jump to this post

HI, Yes, it's 3 X a day, every 8 hours, and it takes about an hour to drip through. I had a home health nurse come and set me up and show me how to do it. It's been OK to do, except I'm sleep deprived having to wait until 10 p.m. to infuse and don't get to bed before 11 p. I'm used to going to bed at 9:30! I take a nap during the day if I can, but you know how that goes. The infusing wasn't new to me as I did that for 4 months 9 years ago when I had MAC and Nocardia...then stayed on other oral antibiotics for 18 months. I haven't really gotten any side effects from the Meropenen. Yes, I have a PICC line in my upper arm as I did before. They put that in at the hospital. I don't know how/if I'll tolerate the Toby but I hope so. The other thing that is happening is I am really getting edema in my legs/ankles etc. I don't know if the extra saline nebs are doing it or from months of little activity. I'm trying to be more active now. Take care and hope you feel better. The Meropenen is helping me but this is a long term deal isn't it? I never even heard of pseudomonas! Darn...

REPLY
1 reply
irenea8 | @irenea8 | Oct 15, 2023
In reply to @pegs "HI, Yes, it's 3 X a day, every 8 hours, and it takes about an hour..." + (show)
@pegs

HI, Yes, it's 3 X a day, every 8 hours, and it takes about an hour to drip through. I had a home health nurse come and set me up and show me how to do it. It's been OK to do, except I'm sleep deprived having to wait until 10 p.m. to infuse and don't get to bed before 11 p. I'm used to going to bed at 9:30! I take a nap during the day if I can, but you know how that goes. The infusing wasn't new to me as I did that for 4 months 9 years ago when I had MAC and Nocardia...then stayed on other oral antibiotics for 18 months. I haven't really gotten any side effects from the Meropenen. Yes, I have a PICC line in my upper arm as I did before. They put that in at the hospital. I don't know how/if I'll tolerate the Toby but I hope so. The other thing that is happening is I am really getting edema in my legs/ankles etc. I don't know if the extra saline nebs are doing it or from months of little activity. I'm trying to be more active now. Take care and hope you feel better. The Meropenen is helping me but this is a long term deal isn't it? I never even heard of pseudomonas! Darn...

Jump to this post

Thank you. It sounds like they did not make you stay over in the hospital for a couple of nights. Perhaps that is because you had been on IV before? My Dr insists I have to stay for at least 48 hours if I do the IV option. One hour drip is not bad. Other people mention 3 hours at twice a day. My Dr mentioned 4 hours which seems crazy long.

REPLY
jellieb | @jellieb | Oct 15, 2023
In reply to @pegs "Hi. I’m on Meropenen, every 8 hours for 2 weeks. I have just 3 more days..." + (show)
@pegs

Hi. I’m on Meropenen, every 8 hours for 2 weeks. I have just 3 more days then start the Toby. I am intolerant to many oral antibiotics. Don’t know what to expect w/Toby. Yes it’s unusual I guess to be on 1 week on 3 weeks off. I’ll find out more this week why. It’s hard to communicate with my doctors. Thanks for your info. I just hope it goes well.

Jump to this post

My Mother had Pseudo...it is rare I see people that have heard of it. I told my mother's doctors when she was in the hospital from August 26th to the end of October please test my mother for pseudomonas. They would not believe me that she had it. She contracted it in the hospital after a gall bladder surgery. Mom was on many antibiotics, drip IV, Toby..etc. Pseudomonas hid for years then returned..it is contagious. (Mom had chronic Bronchitisis all of her life. At age 36 she had 1/2 of her left lung removed.) Finally the pulmonologist came to me after doing the sputum test- with his head down & told me it was pseudomonas. Mom was in & out of the hospital 5 times in 3 1/2 months. After staff knew they were hesitant to be around her.. a few nurses in particular wouldn't come close. If your doctor does not communicate, find another. Be well!

REPLY
2 replies
fdixon63 | @fdixon63 | Oct 15, 2023
In reply to @jellieb "My Mother had Pseudo...it is rare I see people that have heard of it. I told..." + (show)
@jellieb

My Mother had Pseudo...it is rare I see people that have heard of it. I told my mother's doctors when she was in the hospital from August 26th to the end of October please test my mother for pseudomonas. They would not believe me that she had it. She contracted it in the hospital after a gall bladder surgery. Mom was on many antibiotics, drip IV, Toby..etc. Pseudomonas hid for years then returned..it is contagious. (Mom had chronic Bronchitisis all of her life. At age 36 she had 1/2 of her left lung removed.) Finally the pulmonologist came to me after doing the sputum test- with his head down & told me it was pseudomonas. Mom was in & out of the hospital 5 times in 3 1/2 months. After staff knew they were hesitant to be around her.. a few nurses in particular wouldn't come close. If your doctor does not communicate, find another. Be well!

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@pegs. Ok, I'm confused. I've asked all my doctors if Pseudomonas is contagious and they all say no. Any one else been told that? Thanks.

REPLY
pegs | @pegs | Oct 15, 2023

Hi Jellieb, My doctor said it wasn't contagious as well. I think maybe the hospital acquired form might be contagious but maybe not the community acquired one which I guess is what I have. It is in soil and water and most people are not affected by it is what I was told. We hear so much stuff...maybe different for different people?

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