??Pseudomonas??

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Faith4Liliana

New member
Hi Everyone!
How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28 days. She was so sick in dec and now this. Just wondering if maybe someone could give me some feedback on what they went through and what happens after the 28 days. I know they are going to re culture her but what else can happen? I'm just very worried. She has been so healthy and now with in the last three months, she seems to being getting sick a lot more. Thank you all for your support, knowing that I can come here and talk it out with someone who has been there is a big help. It's the unknowns that are scary. Thank You!!!!
 
F

Faith4Liliana

New member
Hi Everyone!
How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28 days. She was so sick in dec and now this. Just wondering if maybe someone could give me some feedback on what they went through and what happens after the 28 days. I know they are going to re culture her but what else can happen? I'm just very worried. She has been so healthy and now with in the last three months, she seems to being getting sick a lot more. Thank you all for your support, knowing that I can come here and talk it out with someone who has been there is a big help. It's the unknowns that are scary. Thank You!!!!
 
F

Faith4Liliana

New member
Hi Everyone!
How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28 days. She was so sick in dec and now this. Just wondering if maybe someone could give me some feedback on what they went through and what happens after the 28 days. I know they are going to re culture her but what else can happen? I'm just very worried. She has been so healthy and now with in the last three months, she seems to being getting sick a lot more. Thank you all for your support, knowing that I can come here and talk it out with someone who has been there is a big help. It's the unknowns that are scary. Thank You!!!!
 
F

Faith4Liliana

New member
Hi Everyone!
How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28 days. She was so sick in dec and now this. Just wondering if maybe someone could give me some feedback on what they went through and what happens after the 28 days. I know they are going to re culture her but what else can happen? I'm just very worried. She has been so healthy and now with in the last three months, she seems to being getting sick a lot more. Thank you all for your support, knowing that I can come here and talk it out with someone who has been there is a big help. It's the unknowns that are scary. Thank You!!!!
 
F

Faith4Liliana

New member
Hi Everyone!
How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28 days. She was so sick in dec and now this. Just wondering if maybe someone could give me some feedback on what they went through and what happens after the 28 days. I know they are going to re culture her but what else can happen? I'm just very worried. She has been so healthy and now with in the last three months, she seems to being getting sick a lot more. Thank you all for your support, knowing that I can come here and talk it out with someone who has been there is a big help. It's the unknowns that are scary. Thank You!!!!
 
S

sdelorenzo

Guest
I have been there with "that call." Not a lot of fun. My son has cultured pseudomonas three times. All three times the Tobi worked the first month and his cultures have come clean for at least a year after the Tobi. He did continue the Tobi on/off for a few months each time. It might be possible that your daughter has had the psuedomonas for a few months and that is why she been sick more often. The first time my son had psuedomonas was at his first birthday. He had zero symptoms. The last two times he had a productive cough, so I knew something was up because he wasn't "sick."

Also, there is a new antibiotic that fights psuedomonas is coming out for cfers this spring. Good news!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
I have been there with "that call." Not a lot of fun. My son has cultured pseudomonas three times. All three times the Tobi worked the first month and his cultures have come clean for at least a year after the Tobi. He did continue the Tobi on/off for a few months each time. It might be possible that your daughter has had the psuedomonas for a few months and that is why she been sick more often. The first time my son had psuedomonas was at his first birthday. He had zero symptoms. The last two times he had a productive cough, so I knew something was up because he wasn't "sick."

Also, there is a new antibiotic that fights psuedomonas is coming out for cfers this spring. Good news!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
I have been there with "that call." Not a lot of fun. My son has cultured pseudomonas three times. All three times the Tobi worked the first month and his cultures have come clean for at least a year after the Tobi. He did continue the Tobi on/off for a few months each time. It might be possible that your daughter has had the psuedomonas for a few months and that is why she been sick more often. The first time my son had psuedomonas was at his first birthday. He had zero symptoms. The last two times he had a productive cough, so I knew something was up because he wasn't "sick."

Also, there is a new antibiotic that fights psuedomonas is coming out for cfers this spring. Good news!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
I have been there with "that call." Not a lot of fun. My son has cultured pseudomonas three times. All three times the Tobi worked the first month and his cultures have come clean for at least a year after the Tobi. He did continue the Tobi on/off for a few months each time. It might be possible that your daughter has had the psuedomonas for a few months and that is why she been sick more often. The first time my son had psuedomonas was at his first birthday. He had zero symptoms. The last two times he had a productive cough, so I knew something was up because he wasn't "sick."

Also, there is a new antibiotic that fights psuedomonas is coming out for cfers this spring. Good news!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
I have been there with "that call." Not a lot of fun. My son has cultured pseudomonas three times. All three times the Tobi worked the first month and his cultures have come clean for at least a year after the Tobi. He did continue the Tobi on/off for a few months each time. It might be possible that your daughter has had the psuedomonas for a few months and that is why she been sick more often. The first time my son had psuedomonas was at his first birthday. He had zero symptoms. The last two times he had a productive cough, so I knew something was up because he wasn't "sick."

Also, there is a new antibiotic that fights psuedomonas is coming out for cfers this spring. Good news!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

Skye

New member
I first cultured PA when I was about 20. It is good that you are on top of it right away with Tobi. It is manageable. I think that it kind of has a reputation of being "the big boogie man", if that makes sense. But don't think that it is something that you can't stay on top of. I don't take it lightly, but there are some great abx out there now that weren't available for me 20 years ago. The above poster is right. There is a very very promising new inhaled antibiotic called Aztreonam Lysine that is due to come on the market probably more like summer or early fall. It has shown tremendous strength in attacking pseudomonas. Hope this helps!
 
S

Skye

New member
I first cultured PA when I was about 20. It is good that you are on top of it right away with Tobi. It is manageable. I think that it kind of has a reputation of being "the big boogie man", if that makes sense. But don't think that it is something that you can't stay on top of. I don't take it lightly, but there are some great abx out there now that weren't available for me 20 years ago. The above poster is right. There is a very very promising new inhaled antibiotic called Aztreonam Lysine that is due to come on the market probably more like summer or early fall. It has shown tremendous strength in attacking pseudomonas. Hope this helps!
 
S

Skye

New member
I first cultured PA when I was about 20. It is good that you are on top of it right away with Tobi. It is manageable. I think that it kind of has a reputation of being "the big boogie man", if that makes sense. But don't think that it is something that you can't stay on top of. I don't take it lightly, but there are some great abx out there now that weren't available for me 20 years ago. The above poster is right. There is a very very promising new inhaled antibiotic called Aztreonam Lysine that is due to come on the market probably more like summer or early fall. It has shown tremendous strength in attacking pseudomonas. Hope this helps!
 
S

Skye

New member
I first cultured PA when I was about 20. It is good that you are on top of it right away with Tobi. It is manageable. I think that it kind of has a reputation of being "the big boogie man", if that makes sense. But don't think that it is something that you can't stay on top of. I don't take it lightly, but there are some great abx out there now that weren't available for me 20 years ago. The above poster is right. There is a very very promising new inhaled antibiotic called Aztreonam Lysine that is due to come on the market probably more like summer or early fall. It has shown tremendous strength in attacking pseudomonas. Hope this helps!
 
S

Skye

New member
I first cultured PA when I was about 20. It is good that you are on top of it right away with Tobi. It is manageable. I think that it kind of has a reputation of being "the big boogie man", if that makes sense. But don't think that it is something that you can't stay on top of. I don't take it lightly, but there are some great abx out there now that weren't available for me 20 years ago. The above poster is right. There is a very very promising new inhaled antibiotic called Aztreonam Lysine that is due to come on the market probably more like summer or early fall. It has shown tremendous strength in attacking pseudomonas. Hope this helps!
 
N

NoExcuses

New member
Be aware that just because just because a sputum/throat culture doesn't show PA, doesn't mean it's not still in the lungs.

Sputum/throat cultures just show the bacteria in the area of the lungs that the sputum is coughed up from. Let's say the sputum was coughed up from the top right of the lungs, where as the PA is hiding in the bottom left. The culture would then show clear of PA, but the reality is that the PA is still there.

A bronch is the best way to test for being clear of PA..... just something to keep in mind.
 
N

NoExcuses

New member
Be aware that just because just because a sputum/throat culture doesn't show PA, doesn't mean it's not still in the lungs.

Sputum/throat cultures just show the bacteria in the area of the lungs that the sputum is coughed up from. Let's say the sputum was coughed up from the top right of the lungs, where as the PA is hiding in the bottom left. The culture would then show clear of PA, but the reality is that the PA is still there.

A bronch is the best way to test for being clear of PA..... just something to keep in mind.
 
N

NoExcuses

New member
Be aware that just because just because a sputum/throat culture doesn't show PA, doesn't mean it's not still in the lungs.

Sputum/throat cultures just show the bacteria in the area of the lungs that the sputum is coughed up from. Let's say the sputum was coughed up from the top right of the lungs, where as the PA is hiding in the bottom left. The culture would then show clear of PA, but the reality is that the PA is still there.

A bronch is the best way to test for being clear of PA..... just something to keep in mind.
 
N

NoExcuses

New member
Be aware that just because just because a sputum/throat culture doesn't show PA, doesn't mean it's not still in the lungs.

Sputum/throat cultures just show the bacteria in the area of the lungs that the sputum is coughed up from. Let's say the sputum was coughed up from the top right of the lungs, where as the PA is hiding in the bottom left. The culture would then show clear of PA, but the reality is that the PA is still there.

A bronch is the best way to test for being clear of PA..... just something to keep in mind.
 
N

NoExcuses

New member
Be aware that just because just because a sputum/throat culture doesn't show PA, doesn't mean it's not still in the lungs.

Sputum/throat cultures just show the bacteria in the area of the lungs that the sputum is coughed up from. Let's say the sputum was coughed up from the top right of the lungs, where as the PA is hiding in the bottom left. The culture would then show clear of PA, but the reality is that the PA is still there.

A bronch is the best way to test for being clear of PA..... just something to keep in mind.
 
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