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Still no better

beleache

New member
It's all so frustrating Sonia <img src="i/expressions/face-icon-small-confused.gif" border="0"> I hate when they dont do a culture <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> That nurse sounds like a gem.. I hope you start getting some results.. Take care, keep us posted and God Bless <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
It's all so frustrating Sonia <img src="i/expressions/face-icon-small-confused.gif" border="0"> I hate when they dont do a culture <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> That nurse sounds like a gem.. I hope you start getting some results.. Take care, keep us posted and God Bless <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
It's all so frustrating Sonia <img src="i/expressions/face-icon-small-confused.gif" border="0"> I hate when they dont do a culture <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> That nurse sounds like a gem.. I hope you start getting some results.. Take care, keep us posted and God Bless <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
It's all so frustrating Sonia <img src="i/expressions/face-icon-small-confused.gif" border="0"> I hate when they dont do a culture <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> That nurse sounds like a gem.. I hope you start getting some results.. Take care, keep us posted and God Bless <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
It's all so frustrating Sonia <img src="i/expressions/face-icon-small-confused.gif" border="0"> I hate when they dont do a culture <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> That nurse sounds like a gem.. I hope you start getting some results.. Take care, keep us posted and God Bless <img src="i/expressions/heart.gif" border="0"> joni
 

Jeana

New member
Sonia,
I'd get an updated culture. My doc does one every time he puts me on drugs. I'm not sure if sensitivities for Collistin are usually tested for. This is only the 2nd time I've been on it, but I'm sure there are other options if TOBI isn't working or adding another drug.
 

Jeana

New member
Sonia,
I'd get an updated culture. My doc does one every time he puts me on drugs. I'm not sure if sensitivities for Collistin are usually tested for. This is only the 2nd time I've been on it, but I'm sure there are other options if TOBI isn't working or adding another drug.
 

Jeana

New member
Sonia,
I'd get an updated culture. My doc does one every time he puts me on drugs. I'm not sure if sensitivities for Collistin are usually tested for. This is only the 2nd time I've been on it, but I'm sure there are other options if TOBI isn't working or adding another drug.
 

Jeana

New member
Sonia,
I'd get an updated culture. My doc does one every time he puts me on drugs. I'm not sure if sensitivities for Collistin are usually tested for. This is only the 2nd time I've been on it, but I'm sure there are other options if TOBI isn't working or adding another drug.
 

Jeana

New member
Sonia,
<br />I'd get an updated culture. My doc does one every time he puts me on drugs. I'm not sure if sensitivities for Collistin are usually tested for. This is only the 2nd time I've been on it, but I'm sure there are other options if TOBI isn't working or adding another drug.
 

ladybug

New member
Just an update. Saw the same nurse today and convinced him to do a culture, but could barely cough anything up this time, which isn't cool cause had I done it last week I was coughing up soooo much from way deep down. URGH.

PFTs were about the same. About 1% better, which is terrible for me after 9 days on meds. Not acceptable.

They refused to add a med since I'm sensitive to both the ones I'm on and they're just treating one organism... The nurse said they usually only go with a thrid med if they want to treat a secondary bug, since for p.a. 2 drugs is the "norm". He will see me again next week and will change my meds if I'm not better by then. But, he was soooo positive I'd be better. Whatever. He didn't really listen to me when I tried to explain that a 1% increase is NOT an increase for me. That is pathetic for me.

I will see this same nurse next week.... Wish I could see my doctor at some point but I guess they're really "busy" right now. So, they have a nurse doing their follow-ups.

I'm just really tired of this clinic. My last clinic when I wasn't getting the results I wanted, they always helped brainstorm with me and added a med, increased dosages, etc. This clinic just doesn't seem to care how I feel about the therapies and skoffs at my worry. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I also made the mistake of saying I thought I was getting a cold today and from that point on the nurse claimed my not getting better was probably more from sinus issues and "infection" (which is NOT possible... i do not have an infection that just popped up on day 7 of tobra and merrem... duh). I know its not from sinus issues.

I'm just really really frustrated and wish I had a clinic that A. let me see my doctor for follow ups! and B. listened to my concerns and cared/asked what I want to do. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ladybug

New member
Just an update. Saw the same nurse today and convinced him to do a culture, but could barely cough anything up this time, which isn't cool cause had I done it last week I was coughing up soooo much from way deep down. URGH.

PFTs were about the same. About 1% better, which is terrible for me after 9 days on meds. Not acceptable.

They refused to add a med since I'm sensitive to both the ones I'm on and they're just treating one organism... The nurse said they usually only go with a thrid med if they want to treat a secondary bug, since for p.a. 2 drugs is the "norm". He will see me again next week and will change my meds if I'm not better by then. But, he was soooo positive I'd be better. Whatever. He didn't really listen to me when I tried to explain that a 1% increase is NOT an increase for me. That is pathetic for me.

I will see this same nurse next week.... Wish I could see my doctor at some point but I guess they're really "busy" right now. So, they have a nurse doing their follow-ups.

I'm just really tired of this clinic. My last clinic when I wasn't getting the results I wanted, they always helped brainstorm with me and added a med, increased dosages, etc. This clinic just doesn't seem to care how I feel about the therapies and skoffs at my worry. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I also made the mistake of saying I thought I was getting a cold today and from that point on the nurse claimed my not getting better was probably more from sinus issues and "infection" (which is NOT possible... i do not have an infection that just popped up on day 7 of tobra and merrem... duh). I know its not from sinus issues.

I'm just really really frustrated and wish I had a clinic that A. let me see my doctor for follow ups! and B. listened to my concerns and cared/asked what I want to do. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ladybug

New member
Just an update. Saw the same nurse today and convinced him to do a culture, but could barely cough anything up this time, which isn't cool cause had I done it last week I was coughing up soooo much from way deep down. URGH.

PFTs were about the same. About 1% better, which is terrible for me after 9 days on meds. Not acceptable.

They refused to add a med since I'm sensitive to both the ones I'm on and they're just treating one organism... The nurse said they usually only go with a thrid med if they want to treat a secondary bug, since for p.a. 2 drugs is the "norm". He will see me again next week and will change my meds if I'm not better by then. But, he was soooo positive I'd be better. Whatever. He didn't really listen to me when I tried to explain that a 1% increase is NOT an increase for me. That is pathetic for me.

I will see this same nurse next week.... Wish I could see my doctor at some point but I guess they're really "busy" right now. So, they have a nurse doing their follow-ups.

I'm just really tired of this clinic. My last clinic when I wasn't getting the results I wanted, they always helped brainstorm with me and added a med, increased dosages, etc. This clinic just doesn't seem to care how I feel about the therapies and skoffs at my worry. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I also made the mistake of saying I thought I was getting a cold today and from that point on the nurse claimed my not getting better was probably more from sinus issues and "infection" (which is NOT possible... i do not have an infection that just popped up on day 7 of tobra and merrem... duh). I know its not from sinus issues.

I'm just really really frustrated and wish I had a clinic that A. let me see my doctor for follow ups! and B. listened to my concerns and cared/asked what I want to do. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ladybug

New member
Just an update. Saw the same nurse today and convinced him to do a culture, but could barely cough anything up this time, which isn't cool cause had I done it last week I was coughing up soooo much from way deep down. URGH.

PFTs were about the same. About 1% better, which is terrible for me after 9 days on meds. Not acceptable.

They refused to add a med since I'm sensitive to both the ones I'm on and they're just treating one organism... The nurse said they usually only go with a thrid med if they want to treat a secondary bug, since for p.a. 2 drugs is the "norm". He will see me again next week and will change my meds if I'm not better by then. But, he was soooo positive I'd be better. Whatever. He didn't really listen to me when I tried to explain that a 1% increase is NOT an increase for me. That is pathetic for me.

I will see this same nurse next week.... Wish I could see my doctor at some point but I guess they're really "busy" right now. So, they have a nurse doing their follow-ups.

I'm just really tired of this clinic. My last clinic when I wasn't getting the results I wanted, they always helped brainstorm with me and added a med, increased dosages, etc. This clinic just doesn't seem to care how I feel about the therapies and skoffs at my worry. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I also made the mistake of saying I thought I was getting a cold today and from that point on the nurse claimed my not getting better was probably more from sinus issues and "infection" (which is NOT possible... i do not have an infection that just popped up on day 7 of tobra and merrem... duh). I know its not from sinus issues.

I'm just really really frustrated and wish I had a clinic that A. let me see my doctor for follow ups! and B. listened to my concerns and cared/asked what I want to do. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ladybug

New member
Just an update. Saw the same nurse today and convinced him to do a culture, but could barely cough anything up this time, which isn't cool cause had I done it last week I was coughing up soooo much from way deep down. URGH.
<br />
<br />PFTs were about the same. About 1% better, which is terrible for me after 9 days on meds. Not acceptable.
<br />
<br />They refused to add a med since I'm sensitive to both the ones I'm on and they're just treating one organism... The nurse said they usually only go with a thrid med if they want to treat a secondary bug, since for p.a. 2 drugs is the "norm". He will see me again next week and will change my meds if I'm not better by then. But, he was soooo positive I'd be better. Whatever. He didn't really listen to me when I tried to explain that a 1% increase is NOT an increase for me. That is pathetic for me.
<br />
<br />I will see this same nurse next week.... Wish I could see my doctor at some point but I guess they're really "busy" right now. So, they have a nurse doing their follow-ups.
<br />
<br />I'm just really tired of this clinic. My last clinic when I wasn't getting the results I wanted, they always helped brainstorm with me and added a med, increased dosages, etc. This clinic just doesn't seem to care how I feel about the therapies and skoffs at my worry. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I also made the mistake of saying I thought I was getting a cold today and from that point on the nurse claimed my not getting better was probably more from sinus issues and "infection" (which is NOT possible... i do not have an infection that just popped up on day 7 of tobra and merrem... duh). I know its not from sinus issues.
<br />
<br />I'm just really really frustrated and wish I had a clinic that A. let me see my doctor for follow ups! and B. listened to my concerns and cared/asked what I want to do. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

Nightwriter

New member
Hi Sonia,

I've been reading your saga and hoping that you would feel better. I don't know whether you want advice or not, but I'll throw some thoughts out to you. Use as you see fit.

It's very strange to me that they give you a nurse to manage your case. You have a lot of questions and if it were me I would insist on seeing a doctor. This is CF, not a simple cold.

About your exacerbation... is it possible, since you cannot cough up anything after just a week on 2 antibiotics, you are improving? -- Even if it isn't as quick as before. With each exacerbation, we have more damage, more inflammation, more scarring. I know that as I've gotten older, I am so much more sensitive than I used to be. And exacerbations take new and different courses than before.

About cultures. Considering in Sept. that you did give them a good sample that cultured something, the cultures do identify which drugs to use and how effective they will be. If you look at your culture, the numbers next to the antibiotic (eg. >8) are indications of that sensitivity. So the 2 drugs chosen for you should work if in fact you have an active bacterial infection.

By adding a third drug or fourth, especially if there is no evidence that they are absolutely needed, your bugs are only going to become resistant to more and more antibiotics very quickly. Then what?

A word about PFT's. Treating an active infection usually leads to PFT's going up. But if your lungs have a lot of inflammation, the PFT's are not going you go up as quickly as you'd like. Adding another antibiotic won't help this. Inflamed airways could lead to subsequent infections. That is one reason some people have endless cycles of IV's. The bugs that aren't killed off, stay trapped in the narrow airways and infection starts brewing all over again.

If you have inflammation, unless it is managed, it is going to be very hard for you to get air in and out of you airways-- resulting in low PFT's. A possible cold, just adds to the problem. Discharge dripping down causes airway inflammation too.

Maybe I am way off the mark. In any event. I hope thay you are feeling better soon and back to your old self.
 

Nightwriter

New member
Hi Sonia,

I've been reading your saga and hoping that you would feel better. I don't know whether you want advice or not, but I'll throw some thoughts out to you. Use as you see fit.

It's very strange to me that they give you a nurse to manage your case. You have a lot of questions and if it were me I would insist on seeing a doctor. This is CF, not a simple cold.

About your exacerbation... is it possible, since you cannot cough up anything after just a week on 2 antibiotics, you are improving? -- Even if it isn't as quick as before. With each exacerbation, we have more damage, more inflammation, more scarring. I know that as I've gotten older, I am so much more sensitive than I used to be. And exacerbations take new and different courses than before.

About cultures. Considering in Sept. that you did give them a good sample that cultured something, the cultures do identify which drugs to use and how effective they will be. If you look at your culture, the numbers next to the antibiotic (eg. >8) are indications of that sensitivity. So the 2 drugs chosen for you should work if in fact you have an active bacterial infection.

By adding a third drug or fourth, especially if there is no evidence that they are absolutely needed, your bugs are only going to become resistant to more and more antibiotics very quickly. Then what?

A word about PFT's. Treating an active infection usually leads to PFT's going up. But if your lungs have a lot of inflammation, the PFT's are not going you go up as quickly as you'd like. Adding another antibiotic won't help this. Inflamed airways could lead to subsequent infections. That is one reason some people have endless cycles of IV's. The bugs that aren't killed off, stay trapped in the narrow airways and infection starts brewing all over again.

If you have inflammation, unless it is managed, it is going to be very hard for you to get air in and out of you airways-- resulting in low PFT's. A possible cold, just adds to the problem. Discharge dripping down causes airway inflammation too.

Maybe I am way off the mark. In any event. I hope thay you are feeling better soon and back to your old self.
 

Nightwriter

New member
Hi Sonia,

I've been reading your saga and hoping that you would feel better. I don't know whether you want advice or not, but I'll throw some thoughts out to you. Use as you see fit.

It's very strange to me that they give you a nurse to manage your case. You have a lot of questions and if it were me I would insist on seeing a doctor. This is CF, not a simple cold.

About your exacerbation... is it possible, since you cannot cough up anything after just a week on 2 antibiotics, you are improving? -- Even if it isn't as quick as before. With each exacerbation, we have more damage, more inflammation, more scarring. I know that as I've gotten older, I am so much more sensitive than I used to be. And exacerbations take new and different courses than before.

About cultures. Considering in Sept. that you did give them a good sample that cultured something, the cultures do identify which drugs to use and how effective they will be. If you look at your culture, the numbers next to the antibiotic (eg. >8) are indications of that sensitivity. So the 2 drugs chosen for you should work if in fact you have an active bacterial infection.

By adding a third drug or fourth, especially if there is no evidence that they are absolutely needed, your bugs are only going to become resistant to more and more antibiotics very quickly. Then what?

A word about PFT's. Treating an active infection usually leads to PFT's going up. But if your lungs have a lot of inflammation, the PFT's are not going you go up as quickly as you'd like. Adding another antibiotic won't help this. Inflamed airways could lead to subsequent infections. That is one reason some people have endless cycles of IV's. The bugs that aren't killed off, stay trapped in the narrow airways and infection starts brewing all over again.

If you have inflammation, unless it is managed, it is going to be very hard for you to get air in and out of you airways-- resulting in low PFT's. A possible cold, just adds to the problem. Discharge dripping down causes airway inflammation too.

Maybe I am way off the mark. In any event. I hope thay you are feeling better soon and back to your old self.
 

Nightwriter

New member
Hi Sonia,

I've been reading your saga and hoping that you would feel better. I don't know whether you want advice or not, but I'll throw some thoughts out to you. Use as you see fit.

It's very strange to me that they give you a nurse to manage your case. You have a lot of questions and if it were me I would insist on seeing a doctor. This is CF, not a simple cold.

About your exacerbation... is it possible, since you cannot cough up anything after just a week on 2 antibiotics, you are improving? -- Even if it isn't as quick as before. With each exacerbation, we have more damage, more inflammation, more scarring. I know that as I've gotten older, I am so much more sensitive than I used to be. And exacerbations take new and different courses than before.

About cultures. Considering in Sept. that you did give them a good sample that cultured something, the cultures do identify which drugs to use and how effective they will be. If you look at your culture, the numbers next to the antibiotic (eg. >8) are indications of that sensitivity. So the 2 drugs chosen for you should work if in fact you have an active bacterial infection.

By adding a third drug or fourth, especially if there is no evidence that they are absolutely needed, your bugs are only going to become resistant to more and more antibiotics very quickly. Then what?

A word about PFT's. Treating an active infection usually leads to PFT's going up. But if your lungs have a lot of inflammation, the PFT's are not going you go up as quickly as you'd like. Adding another antibiotic won't help this. Inflamed airways could lead to subsequent infections. That is one reason some people have endless cycles of IV's. The bugs that aren't killed off, stay trapped in the narrow airways and infection starts brewing all over again.

If you have inflammation, unless it is managed, it is going to be very hard for you to get air in and out of you airways-- resulting in low PFT's. A possible cold, just adds to the problem. Discharge dripping down causes airway inflammation too.

Maybe I am way off the mark. In any event. I hope thay you are feeling better soon and back to your old self.
 

Nightwriter

New member
Hi Sonia,
<br />
<br />I've been reading your saga and hoping that you would feel better. I don't know whether you want advice or not, but I'll throw some thoughts out to you. Use as you see fit.
<br />
<br />It's very strange to me that they give you a nurse to manage your case. You have a lot of questions and if it were me I would insist on seeing a doctor. This is CF, not a simple cold.
<br />
<br />About your exacerbation... is it possible, since you cannot cough up anything after just a week on 2 antibiotics, you are improving? -- Even if it isn't as quick as before. With each exacerbation, we have more damage, more inflammation, more scarring. I know that as I've gotten older, I am so much more sensitive than I used to be. And exacerbations take new and different courses than before.
<br />
<br />About cultures. Considering in Sept. that you did give them a good sample that cultured something, the cultures do identify which drugs to use and how effective they will be. If you look at your culture, the numbers next to the antibiotic (eg. >8) are indications of that sensitivity. So the 2 drugs chosen for you should work if in fact you have an active bacterial infection.
<br />
<br />By adding a third drug or fourth, especially if there is no evidence that they are absolutely needed, your bugs are only going to become resistant to more and more antibiotics very quickly. Then what?
<br />
<br />A word about PFT's. Treating an active infection usually leads to PFT's going up. But if your lungs have a lot of inflammation, the PFT's are not going you go up as quickly as you'd like. Adding another antibiotic won't help this. Inflamed airways could lead to subsequent infections. That is one reason some people have endless cycles of IV's. The bugs that aren't killed off, stay trapped in the narrow airways and infection starts brewing all over again.
<br />
<br />If you have inflammation, unless it is managed, it is going to be very hard for you to get air in and out of you airways-- resulting in low PFT's. A possible cold, just adds to the problem. Discharge dripping down causes airway inflammation too.
<br />
<br />Maybe I am way off the mark. In any event. I hope thay you are feeling better soon and back to your old self.
 
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