What next?

C

catboogie

New member
Hey everyone,

Well tomorrow will be my last day of antibiotics for a while. A celebration will be in order!!

A brief history of the last three months of my life: 3 weeks on orals; 3.5 weeks on a new combo of IV and oral abx; 2 week break from abx adding Prednisone; 3 weeks of a different combo of IV/oral abx with a low dose of Prednisone. After all this, I'm not back. I know, right? Wah! I freaking hate it.

And it's not as if the abx haven't helped. I've noticed improvment in how I feel and how my sputum looks, but my PFTs haven't come back. Is it time to admit defeat? I feel like I've tried everything; I feel like there is nothing more that I could be doing right now, and if there was I wouldn't have the energy to do it anyway.

I was wondering if anyone had been through a similar situation. Is there anything else I could try? Here are my current plans:
1. finish these abx tomorrow, give myself a couple of weeks off of them continuing with exercise and all therapies
2. i'm getting a second opinion. i know! i feel like i'm cheating on my doctor. maybe some new light will be shed on my situation
3. should i push for a bronch? this is tricky because on one hand i don't want to be missing anything down there; but on the other hand i feel like the abx <i>have</i> been treating what i have since my sputum looks better and i feel better. thoughts on this?
4. i'm having a hard time thinking about getting rid of my picc line even though i may need an extended break from IVs for a month or so. is this nuts?? i know. seems like i would be dying to get it out. but in reality, the picc line is the only way i ever really get better. so if i'm not fully better, how could i think about getting rid of it?

Thanks for listening and any advice would be greatly appreciated.
 
C

catboogie

New member
Hey everyone,

Well tomorrow will be my last day of antibiotics for a while. A celebration will be in order!!

A brief history of the last three months of my life: 3 weeks on orals; 3.5 weeks on a new combo of IV and oral abx; 2 week break from abx adding Prednisone; 3 weeks of a different combo of IV/oral abx with a low dose of Prednisone. After all this, I'm not back. I know, right? Wah! I freaking hate it.

And it's not as if the abx haven't helped. I've noticed improvment in how I feel and how my sputum looks, but my PFTs haven't come back. Is it time to admit defeat? I feel like I've tried everything; I feel like there is nothing more that I could be doing right now, and if there was I wouldn't have the energy to do it anyway.

I was wondering if anyone had been through a similar situation. Is there anything else I could try? Here are my current plans:
1. finish these abx tomorrow, give myself a couple of weeks off of them continuing with exercise and all therapies
2. i'm getting a second opinion. i know! i feel like i'm cheating on my doctor. maybe some new light will be shed on my situation
3. should i push for a bronch? this is tricky because on one hand i don't want to be missing anything down there; but on the other hand i feel like the abx <i>have</i> been treating what i have since my sputum looks better and i feel better. thoughts on this?
4. i'm having a hard time thinking about getting rid of my picc line even though i may need an extended break from IVs for a month or so. is this nuts?? i know. seems like i would be dying to get it out. but in reality, the picc line is the only way i ever really get better. so if i'm not fully better, how could i think about getting rid of it?

Thanks for listening and any advice would be greatly appreciated.
 
C

catboogie

New member
Hey everyone,

Well tomorrow will be my last day of antibiotics for a while. A celebration will be in order!!

A brief history of the last three months of my life: 3 weeks on orals; 3.5 weeks on a new combo of IV and oral abx; 2 week break from abx adding Prednisone; 3 weeks of a different combo of IV/oral abx with a low dose of Prednisone. After all this, I'm not back. I know, right? Wah! I freaking hate it.

And it's not as if the abx haven't helped. I've noticed improvment in how I feel and how my sputum looks, but my PFTs haven't come back. Is it time to admit defeat? I feel like I've tried everything; I feel like there is nothing more that I could be doing right now, and if there was I wouldn't have the energy to do it anyway.

I was wondering if anyone had been through a similar situation. Is there anything else I could try? Here are my current plans:
1. finish these abx tomorrow, give myself a couple of weeks off of them continuing with exercise and all therapies
2. i'm getting a second opinion. i know! i feel like i'm cheating on my doctor. maybe some new light will be shed on my situation
3. should i push for a bronch? this is tricky because on one hand i don't want to be missing anything down there; but on the other hand i feel like the abx <i>have</i> been treating what i have since my sputum looks better and i feel better. thoughts on this?
4. i'm having a hard time thinking about getting rid of my picc line even though i may need an extended break from IVs for a month or so. is this nuts?? i know. seems like i would be dying to get it out. but in reality, the picc line is the only way i ever really get better. so if i'm not fully better, how could i think about getting rid of it?

Thanks for listening and any advice would be greatly appreciated.
 
C

catboogie

New member
Hey everyone,

Well tomorrow will be my last day of antibiotics for a while. A celebration will be in order!!

A brief history of the last three months of my life: 3 weeks on orals; 3.5 weeks on a new combo of IV and oral abx; 2 week break from abx adding Prednisone; 3 weeks of a different combo of IV/oral abx with a low dose of Prednisone. After all this, I'm not back. I know, right? Wah! I freaking hate it.

And it's not as if the abx haven't helped. I've noticed improvment in how I feel and how my sputum looks, but my PFTs haven't come back. Is it time to admit defeat? I feel like I've tried everything; I feel like there is nothing more that I could be doing right now, and if there was I wouldn't have the energy to do it anyway.

I was wondering if anyone had been through a similar situation. Is there anything else I could try? Here are my current plans:
1. finish these abx tomorrow, give myself a couple of weeks off of them continuing with exercise and all therapies
2. i'm getting a second opinion. i know! i feel like i'm cheating on my doctor. maybe some new light will be shed on my situation
3. should i push for a bronch? this is tricky because on one hand i don't want to be missing anything down there; but on the other hand i feel like the abx <i>have</i> been treating what i have since my sputum looks better and i feel better. thoughts on this?
4. i'm having a hard time thinking about getting rid of my picc line even though i may need an extended break from IVs for a month or so. is this nuts?? i know. seems like i would be dying to get it out. but in reality, the picc line is the only way i ever really get better. so if i'm not fully better, how could i think about getting rid of it?

Thanks for listening and any advice would be greatly appreciated.
 
C

catboogie

New member
Hey everyone,
<br />
<br />Well tomorrow will be my last day of antibiotics for a while. A celebration will be in order!!
<br />
<br />A brief history of the last three months of my life: 3 weeks on orals; 3.5 weeks on a new combo of IV and oral abx; 2 week break from abx adding Prednisone; 3 weeks of a different combo of IV/oral abx with a low dose of Prednisone. After all this, I'm not back. I know, right? Wah! I freaking hate it.
<br />
<br />And it's not as if the abx haven't helped. I've noticed improvment in how I feel and how my sputum looks, but my PFTs haven't come back. Is it time to admit defeat? I feel like I've tried everything; I feel like there is nothing more that I could be doing right now, and if there was I wouldn't have the energy to do it anyway.
<br />
<br />I was wondering if anyone had been through a similar situation. Is there anything else I could try? Here are my current plans:
<br />1. finish these abx tomorrow, give myself a couple of weeks off of them continuing with exercise and all therapies
<br />2. i'm getting a second opinion. i know! i feel like i'm cheating on my doctor. maybe some new light will be shed on my situation
<br />3. should i push for a bronch? this is tricky because on one hand i don't want to be missing anything down there; but on the other hand i feel like the abx <i>have</i> been treating what i have since my sputum looks better and i feel better. thoughts on this?
<br />4. i'm having a hard time thinking about getting rid of my picc line even though i may need an extended break from IVs for a month or so. is this nuts?? i know. seems like i would be dying to get it out. but in reality, the picc line is the only way i ever really get better. so if i'm not fully better, how could i think about getting rid of it?
<br />
<br />Thanks for listening and any advice would be greatly appreciated.
 
S

Skye

New member
well....that is a lot to deal with and a lot of questions. I can share my experience and I think others on here may agree. Sometimes it takes a bit of time after the antibiotics are out of your system and you are feeling more yourself and the PICC line has been pulled to get back to baseline.

It is GREAT that you are feeling better! Are you SOB or running a fever? Sounds like your sputum looks much better. Those are all really good things.

I went through this back in February. I went a couple of weeks on orals...then to IV antibiotics for 2 weeks....added prednisone....1 more week. My PFT's were down on a Fri. and then I went for a 2nd opinion 3 hours away and they magically popped up. Hmmmm....perhaps technique or other factors were playing into that. Then I went an extra week on IV's and when they pulled the line my PFT's were down a little. After about a week of having the line pulled they were down to where I started. So here I go again.....we did an inhaled antibotic and oral and thank goodness they are back to baseline. This is June though...that is about 5 months of this roller coaster ride. The important thing during all of this time though is that I feel really good and I sound really clear. So the numbers tell me something but they aren't telling the whole story.

That was the short version of my winter. I think it is always smart to get a second opinion and all good docs will agree with that! I am sorry I can not offer advise on the bronc. I hope someone responds to that.
 
S

Skye

New member
well....that is a lot to deal with and a lot of questions. I can share my experience and I think others on here may agree. Sometimes it takes a bit of time after the antibiotics are out of your system and you are feeling more yourself and the PICC line has been pulled to get back to baseline.

It is GREAT that you are feeling better! Are you SOB or running a fever? Sounds like your sputum looks much better. Those are all really good things.

I went through this back in February. I went a couple of weeks on orals...then to IV antibiotics for 2 weeks....added prednisone....1 more week. My PFT's were down on a Fri. and then I went for a 2nd opinion 3 hours away and they magically popped up. Hmmmm....perhaps technique or other factors were playing into that. Then I went an extra week on IV's and when they pulled the line my PFT's were down a little. After about a week of having the line pulled they were down to where I started. So here I go again.....we did an inhaled antibotic and oral and thank goodness they are back to baseline. This is June though...that is about 5 months of this roller coaster ride. The important thing during all of this time though is that I feel really good and I sound really clear. So the numbers tell me something but they aren't telling the whole story.

That was the short version of my winter. I think it is always smart to get a second opinion and all good docs will agree with that! I am sorry I can not offer advise on the bronc. I hope someone responds to that.
 
S

Skye

New member
well....that is a lot to deal with and a lot of questions. I can share my experience and I think others on here may agree. Sometimes it takes a bit of time after the antibiotics are out of your system and you are feeling more yourself and the PICC line has been pulled to get back to baseline.

It is GREAT that you are feeling better! Are you SOB or running a fever? Sounds like your sputum looks much better. Those are all really good things.

I went through this back in February. I went a couple of weeks on orals...then to IV antibiotics for 2 weeks....added prednisone....1 more week. My PFT's were down on a Fri. and then I went for a 2nd opinion 3 hours away and they magically popped up. Hmmmm....perhaps technique or other factors were playing into that. Then I went an extra week on IV's and when they pulled the line my PFT's were down a little. After about a week of having the line pulled they were down to where I started. So here I go again.....we did an inhaled antibotic and oral and thank goodness they are back to baseline. This is June though...that is about 5 months of this roller coaster ride. The important thing during all of this time though is that I feel really good and I sound really clear. So the numbers tell me something but they aren't telling the whole story.

That was the short version of my winter. I think it is always smart to get a second opinion and all good docs will agree with that! I am sorry I can not offer advise on the bronc. I hope someone responds to that.
 
S

Skye

New member
well....that is a lot to deal with and a lot of questions. I can share my experience and I think others on here may agree. Sometimes it takes a bit of time after the antibiotics are out of your system and you are feeling more yourself and the PICC line has been pulled to get back to baseline.

It is GREAT that you are feeling better! Are you SOB or running a fever? Sounds like your sputum looks much better. Those are all really good things.

I went through this back in February. I went a couple of weeks on orals...then to IV antibiotics for 2 weeks....added prednisone....1 more week. My PFT's were down on a Fri. and then I went for a 2nd opinion 3 hours away and they magically popped up. Hmmmm....perhaps technique or other factors were playing into that. Then I went an extra week on IV's and when they pulled the line my PFT's were down a little. After about a week of having the line pulled they were down to where I started. So here I go again.....we did an inhaled antibotic and oral and thank goodness they are back to baseline. This is June though...that is about 5 months of this roller coaster ride. The important thing during all of this time though is that I feel really good and I sound really clear. So the numbers tell me something but they aren't telling the whole story.

That was the short version of my winter. I think it is always smart to get a second opinion and all good docs will agree with that! I am sorry I can not offer advise on the bronc. I hope someone responds to that.
 
S

Skye

New member
well....that is a lot to deal with and a lot of questions. I can share my experience and I think others on here may agree. Sometimes it takes a bit of time after the antibiotics are out of your system and you are feeling more yourself and the PICC line has been pulled to get back to baseline.
<br />
<br />It is GREAT that you are feeling better! Are you SOB or running a fever? Sounds like your sputum looks much better. Those are all really good things.
<br />
<br />I went through this back in February. I went a couple of weeks on orals...then to IV antibiotics for 2 weeks....added prednisone....1 more week. My PFT's were down on a Fri. and then I went for a 2nd opinion 3 hours away and they magically popped up. Hmmmm....perhaps technique or other factors were playing into that. Then I went an extra week on IV's and when they pulled the line my PFT's were down a little. After about a week of having the line pulled they were down to where I started. So here I go again.....we did an inhaled antibotic and oral and thank goodness they are back to baseline. This is June though...that is about 5 months of this roller coaster ride. The important thing during all of this time though is that I feel really good and I sound really clear. So the numbers tell me something but they aren't telling the whole story.
<br />
<br />That was the short version of my winter. I think it is always smart to get a second opinion and all good docs will agree with that! I am sorry I can not offer advise on the bronc. I hope someone responds to that.
<br />
<br />
 
A

AnD

New member
I'm afraid I can't help, Cat, but I'm glad that everything else is getting better- maybe it will just take a bit of rest and then excercise to get your pft's back up? All those meds have got to have been hard on your body- maybe you just need a break to recoup for a while... <img src="i/expressions/heart.gif" border="0">
 
A

AnD

New member
I'm afraid I can't help, Cat, but I'm glad that everything else is getting better- maybe it will just take a bit of rest and then excercise to get your pft's back up? All those meds have got to have been hard on your body- maybe you just need a break to recoup for a while... <img src="i/expressions/heart.gif" border="0">
 
A

AnD

New member
I'm afraid I can't help, Cat, but I'm glad that everything else is getting better- maybe it will just take a bit of rest and then excercise to get your pft's back up? All those meds have got to have been hard on your body- maybe you just need a break to recoup for a while... <img src="i/expressions/heart.gif" border="0">
 
A

AnD

New member
I'm afraid I can't help, Cat, but I'm glad that everything else is getting better- maybe it will just take a bit of rest and then excercise to get your pft's back up? All those meds have got to have been hard on your body- maybe you just need a break to recoup for a while... <img src="i/expressions/heart.gif" border="0">
 
A

AnD

New member
I'm afraid I can't help, Cat, but I'm glad that everything else is getting better- maybe it will just take a bit of rest and then excercise to get your pft's back up? All those meds have got to have been hard on your body- maybe you just need a break to recoup for a while... <img src="i/expressions/heart.gif" border="0">
 
S

Sevenstars

New member
I've been there so many times myself. I'm sorry to say I don't have good advice to give, though.

I think after all those meds, if I were you, I'd just want a rest. Maybe even going in the hospital might be the right move? Give you some R&R and let them do your meds and treatments for you. Eat a whole bunch without having to worry about cooking and cleaning. If not that, could they send your culture for synergy testing? Perhaps a different combo of drugs would work better.

I've asked my doc for a bronch in similar situations and he always said no. He said they "don't do them that much on adults" and it was an unnecessary risk. He was confident the cultures were accurate. Still, it is something I've considered, and maybe your doc would be more receptive to the idea.

Last thing, the PICC. I am not sure what your history is regarding ports, but have you considered one? I'm not sure how many times you get IVs a year so it might not be a good choice for you, but it's another consideration. I always hated getting my PICC out too... I figured with my luck, I'd get it out and need IVs the next week. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> So, I can understand how you feel there. I would wait, if I were you, and perhaps see about that bronch or maybe more meds after you take a bit of a break.

Feel better!! <img src="i/expressions/heart.gif" border="0">
 
S

Sevenstars

New member
I've been there so many times myself. I'm sorry to say I don't have good advice to give, though.

I think after all those meds, if I were you, I'd just want a rest. Maybe even going in the hospital might be the right move? Give you some R&R and let them do your meds and treatments for you. Eat a whole bunch without having to worry about cooking and cleaning. If not that, could they send your culture for synergy testing? Perhaps a different combo of drugs would work better.

I've asked my doc for a bronch in similar situations and he always said no. He said they "don't do them that much on adults" and it was an unnecessary risk. He was confident the cultures were accurate. Still, it is something I've considered, and maybe your doc would be more receptive to the idea.

Last thing, the PICC. I am not sure what your history is regarding ports, but have you considered one? I'm not sure how many times you get IVs a year so it might not be a good choice for you, but it's another consideration. I always hated getting my PICC out too... I figured with my luck, I'd get it out and need IVs the next week. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> So, I can understand how you feel there. I would wait, if I were you, and perhaps see about that bronch or maybe more meds after you take a bit of a break.

Feel better!! <img src="i/expressions/heart.gif" border="0">
 
S

Sevenstars

New member
I've been there so many times myself. I'm sorry to say I don't have good advice to give, though.

I think after all those meds, if I were you, I'd just want a rest. Maybe even going in the hospital might be the right move? Give you some R&R and let them do your meds and treatments for you. Eat a whole bunch without having to worry about cooking and cleaning. If not that, could they send your culture for synergy testing? Perhaps a different combo of drugs would work better.

I've asked my doc for a bronch in similar situations and he always said no. He said they "don't do them that much on adults" and it was an unnecessary risk. He was confident the cultures were accurate. Still, it is something I've considered, and maybe your doc would be more receptive to the idea.

Last thing, the PICC. I am not sure what your history is regarding ports, but have you considered one? I'm not sure how many times you get IVs a year so it might not be a good choice for you, but it's another consideration. I always hated getting my PICC out too... I figured with my luck, I'd get it out and need IVs the next week. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> So, I can understand how you feel there. I would wait, if I were you, and perhaps see about that bronch or maybe more meds after you take a bit of a break.

Feel better!! <img src="i/expressions/heart.gif" border="0">
 
S

Sevenstars

New member
I've been there so many times myself. I'm sorry to say I don't have good advice to give, though.

I think after all those meds, if I were you, I'd just want a rest. Maybe even going in the hospital might be the right move? Give you some R&R and let them do your meds and treatments for you. Eat a whole bunch without having to worry about cooking and cleaning. If not that, could they send your culture for synergy testing? Perhaps a different combo of drugs would work better.

I've asked my doc for a bronch in similar situations and he always said no. He said they "don't do them that much on adults" and it was an unnecessary risk. He was confident the cultures were accurate. Still, it is something I've considered, and maybe your doc would be more receptive to the idea.

Last thing, the PICC. I am not sure what your history is regarding ports, but have you considered one? I'm not sure how many times you get IVs a year so it might not be a good choice for you, but it's another consideration. I always hated getting my PICC out too... I figured with my luck, I'd get it out and need IVs the next week. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> So, I can understand how you feel there. I would wait, if I were you, and perhaps see about that bronch or maybe more meds after you take a bit of a break.

Feel better!! <img src="i/expressions/heart.gif" border="0">
 
S

Sevenstars

New member
I've been there so many times myself. I'm sorry to say I don't have good advice to give, though.
<br />
<br />I think after all those meds, if I were you, I'd just want a rest. Maybe even going in the hospital might be the right move? Give you some R&R and let them do your meds and treatments for you. Eat a whole bunch without having to worry about cooking and cleaning. If not that, could they send your culture for synergy testing? Perhaps a different combo of drugs would work better.
<br />
<br />I've asked my doc for a bronch in similar situations and he always said no. He said they "don't do them that much on adults" and it was an unnecessary risk. He was confident the cultures were accurate. Still, it is something I've considered, and maybe your doc would be more receptive to the idea.
<br />
<br />Last thing, the PICC. I am not sure what your history is regarding ports, but have you considered one? I'm not sure how many times you get IVs a year so it might not be a good choice for you, but it's another consideration. I always hated getting my PICC out too... I figured with my luck, I'd get it out and need IVs the next week. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> So, I can understand how you feel there. I would wait, if I were you, and perhaps see about that bronch or maybe more meds after you take a bit of a break.
<br />
<br />Feel better!! <img src="i/expressions/heart.gif" border="0">
 
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