PDA

View Full Version : Day six of lock-up



triples15
10-16-2007, 02:42 PM
I just signed up for a blog, but it says it will be ready in 1-2 days so I'm going to put this here but it might be pretty long, SORRY!

Anyway, I am 26 and my FEV1 usually sits right at 70% (has been for years). In clinic in August just two months ago it was 69%. I caught a cold almost a month ago that the doctors first tried treating w/ 2 weeks of Levaquin and then when that didn't work we switched and did a week of Zithro and Prednisone. When I still didn't feel better I came in and my FEV1 was 52%. They have me on IV Tobra and Cefepime, but six days later my FEV1 is only up to 55%. I am starting to freak a little. I have never had to stay in for more than 5 days because my PFT's usually rebound enough for me to go home and finish IV's there. They will redo PFT's on Thursday, but if there is still no improvement they will switch antibiotics. I guess my question is has anyone had something similar happen and another drug was really effective? And have you recovered from this big of a drop in lung function? These 2 have always worked for me but I guess maybe it is time to switch. They said my culture didn't show resistance to either one but who knows!!

I guess I'm just really nervous because this is the lowest my PFT's have ever been, and they are not showing any improvement. Just a little scary and depressing. Any experiences anyone has had that they could share would be helpful. Thanks so much for reading!

triples15
10-16-2007, 02:42 PM
I just signed up for a blog, but it says it will be ready in 1-2 days so I'm going to put this here but it might be pretty long, SORRY!

Anyway, I am 26 and my FEV1 usually sits right at 70% (has been for years). In clinic in August just two months ago it was 69%. I caught a cold almost a month ago that the doctors first tried treating w/ 2 weeks of Levaquin and then when that didn't work we switched and did a week of Zithro and Prednisone. When I still didn't feel better I came in and my FEV1 was 52%. They have me on IV Tobra and Cefepime, but six days later my FEV1 is only up to 55%. I am starting to freak a little. I have never had to stay in for more than 5 days because my PFT's usually rebound enough for me to go home and finish IV's there. They will redo PFT's on Thursday, but if there is still no improvement they will switch antibiotics. I guess my question is has anyone had something similar happen and another drug was really effective? And have you recovered from this big of a drop in lung function? These 2 have always worked for me but I guess maybe it is time to switch. They said my culture didn't show resistance to either one but who knows!!

I guess I'm just really nervous because this is the lowest my PFT's have ever been, and they are not showing any improvement. Just a little scary and depressing. Any experiences anyone has had that they could share would be helpful. Thanks so much for reading!

triples15
10-16-2007, 02:42 PM
I just signed up for a blog, but it says it will be ready in 1-2 days so I'm going to put this here but it might be pretty long, SORRY!

Anyway, I am 26 and my FEV1 usually sits right at 70% (has been for years). In clinic in August just two months ago it was 69%. I caught a cold almost a month ago that the doctors first tried treating w/ 2 weeks of Levaquin and then when that didn't work we switched and did a week of Zithro and Prednisone. When I still didn't feel better I came in and my FEV1 was 52%. They have me on IV Tobra and Cefepime, but six days later my FEV1 is only up to 55%. I am starting to freak a little. I have never had to stay in for more than 5 days because my PFT's usually rebound enough for me to go home and finish IV's there. They will redo PFT's on Thursday, but if there is still no improvement they will switch antibiotics. I guess my question is has anyone had something similar happen and another drug was really effective? And have you recovered from this big of a drop in lung function? These 2 have always worked for me but I guess maybe it is time to switch. They said my culture didn't show resistance to either one but who knows!!

I guess I'm just really nervous because this is the lowest my PFT's have ever been, and they are not showing any improvement. Just a little scary and depressing. Any experiences anyone has had that they could share would be helpful. Thanks so much for reading!

triples15
10-16-2007, 02:42 PM
I just signed up for a blog, but it says it will be ready in 1-2 days so I'm going to put this here but it might be pretty long, SORRY!

Anyway, I am 26 and my FEV1 usually sits right at 70% (has been for years). In clinic in August just two months ago it was 69%. I caught a cold almost a month ago that the doctors first tried treating w/ 2 weeks of Levaquin and then when that didn't work we switched and did a week of Zithro and Prednisone. When I still didn't feel better I came in and my FEV1 was 52%. They have me on IV Tobra and Cefepime, but six days later my FEV1 is only up to 55%. I am starting to freak a little. I have never had to stay in for more than 5 days because my PFT's usually rebound enough for me to go home and finish IV's there. They will redo PFT's on Thursday, but if there is still no improvement they will switch antibiotics. I guess my question is has anyone had something similar happen and another drug was really effective? And have you recovered from this big of a drop in lung function? These 2 have always worked for me but I guess maybe it is time to switch. They said my culture didn't show resistance to either one but who knows!!

I guess I'm just really nervous because this is the lowest my PFT's have ever been, and they are not showing any improvement. Just a little scary and depressing. Any experiences anyone has had that they could share would be helpful. Thanks so much for reading!

triples15
10-16-2007, 02:42 PM
I just signed up for a blog, but it says it will be ready in 1-2 days so I'm going to put this here but it might be pretty long, SORRY!

Anyway, I am 26 and my FEV1 usually sits right at 70% (has been for years). In clinic in August just two months ago it was 69%. I caught a cold almost a month ago that the doctors first tried treating w/ 2 weeks of Levaquin and then when that didn't work we switched and did a week of Zithro and Prednisone. When I still didn't feel better I came in and my FEV1 was 52%. They have me on IV Tobra and Cefepime, but six days later my FEV1 is only up to 55%. I am starting to freak a little. I have never had to stay in for more than 5 days because my PFT's usually rebound enough for me to go home and finish IV's there. They will redo PFT's on Thursday, but if there is still no improvement they will switch antibiotics. I guess my question is has anyone had something similar happen and another drug was really effective? And have you recovered from this big of a drop in lung function? These 2 have always worked for me but I guess maybe it is time to switch. They said my culture didn't show resistance to either one but who knows!!

I guess I'm just really nervous because this is the lowest my PFT's have ever been, and they are not showing any improvement. Just a little scary and depressing. Any experiences anyone has had that they could share would be helpful. Thanks so much for reading!

kswitch
10-16-2007, 03:14 PM
i don't really know what to tell you about the abx, i have never had any issues with them. every time i've been in i've gotten zosyn and tobramycin i.v., and the oral zithro. fortunately it's worked every time.

the fev's, though, i do have experience with. the lowest i've managed to drop is 45%, and i was able to bring that all the way back up to 78%. where i was before i went in, i don't know, but when i got out, i was feeling bettr than i had in years.

so, yes, your pft's can return after that much of a drop. of course, it all depends on what's really going on in your chest. it kind of sounds like they're having some trouble figuring that out, but you should be able to get at least most of that back.

kswitch
10-16-2007, 03:14 PM
i don't really know what to tell you about the abx, i have never had any issues with them. every time i've been in i've gotten zosyn and tobramycin i.v., and the oral zithro. fortunately it's worked every time.

the fev's, though, i do have experience with. the lowest i've managed to drop is 45%, and i was able to bring that all the way back up to 78%. where i was before i went in, i don't know, but when i got out, i was feeling bettr than i had in years.

so, yes, your pft's can return after that much of a drop. of course, it all depends on what's really going on in your chest. it kind of sounds like they're having some trouble figuring that out, but you should be able to get at least most of that back.

kswitch
10-16-2007, 03:14 PM
i don't really know what to tell you about the abx, i have never had any issues with them. every time i've been in i've gotten zosyn and tobramycin i.v., and the oral zithro. fortunately it's worked every time.

the fev's, though, i do have experience with. the lowest i've managed to drop is 45%, and i was able to bring that all the way back up to 78%. where i was before i went in, i don't know, but when i got out, i was feeling bettr than i had in years.

so, yes, your pft's can return after that much of a drop. of course, it all depends on what's really going on in your chest. it kind of sounds like they're having some trouble figuring that out, but you should be able to get at least most of that back.

kswitch
10-16-2007, 03:14 PM
i don't really know what to tell you about the abx, i have never had any issues with them. every time i've been in i've gotten zosyn and tobramycin i.v., and the oral zithro. fortunately it's worked every time.

the fev's, though, i do have experience with. the lowest i've managed to drop is 45%, and i was able to bring that all the way back up to 78%. where i was before i went in, i don't know, but when i got out, i was feeling bettr than i had in years.

so, yes, your pft's can return after that much of a drop. of course, it all depends on what's really going on in your chest. it kind of sounds like they're having some trouble figuring that out, but you should be able to get at least most of that back.

kswitch
10-16-2007, 03:14 PM
i don't really know what to tell you about the abx, i have never had any issues with them. every time i've been in i've gotten zosyn and tobramycin i.v., and the oral zithro. fortunately it's worked every time.

the fev's, though, i do have experience with. the lowest i've managed to drop is 45%, and i was able to bring that all the way back up to 78%. where i was before i went in, i don't know, but when i got out, i was feeling bettr than i had in years.

so, yes, your pft's can return after that much of a drop. of course, it all depends on what's really going on in your chest. it kind of sounds like they're having some trouble figuring that out, but you should be able to get at least most of that back.

Irishgal
10-17-2007, 12:28 AM
Hey! I know how scared you are. I went through the same thing last year. I have always been very healthy, & last year I went in for a tune up (my 4th ever). I could not believe it but my FEV1 actually went down from 67% to 50% after 2 weeks of IV antibiotics (zosyn & amikacin). I was shocked, devistated, & confused. I kept the PICC line in and took a 2 week rest from the antibiotics. Then, started another 2 week course, yet switched one of the antibiotics from zosyn to meropenem (I cannot do tobra). Thank goodness, it went up to 78%, & I held steady at 80% for a year after.

Then last month I dropped to 67% again, but went up to 76% in 3 days. I went home to finish the IV's and guess what? I caught a HORRIBLE cold. FEV1 dropped to 67% again. Therefore, I kept the antibiotics going & it took a full 4 weeks on them before I got back up to 74%, which is where I am now. I also did prednisone for a week which I think really helped. I was so scared, and my nurse kept saying "its that cold still in your chest." She was right-it just took a really long time!!
I would siggest LIGHT exercising & really drink TONS of fluids too. Those 2 things really helped me get that thick mucus up from that cold.

I am upset that I am not back to baseine, but I think now I can work out more, & really try to get them back up to 80%. Also, this is my worst season for allergies, & the warm spell here in the midwest is not helping!!
Good luck-honestly give it some more time, really do that chest PT, exercising, & TONS of water. I'll be thinking of you!!

Irishgal
10-17-2007, 12:28 AM
Hey! I know how scared you are. I went through the same thing last year. I have always been very healthy, & last year I went in for a tune up (my 4th ever). I could not believe it but my FEV1 actually went down from 67% to 50% after 2 weeks of IV antibiotics (zosyn & amikacin). I was shocked, devistated, & confused. I kept the PICC line in and took a 2 week rest from the antibiotics. Then, started another 2 week course, yet switched one of the antibiotics from zosyn to meropenem (I cannot do tobra). Thank goodness, it went up to 78%, & I held steady at 80% for a year after.

Then last month I dropped to 67% again, but went up to 76% in 3 days. I went home to finish the IV's and guess what? I caught a HORRIBLE cold. FEV1 dropped to 67% again. Therefore, I kept the antibiotics going & it took a full 4 weeks on them before I got back up to 74%, which is where I am now. I also did prednisone for a week which I think really helped. I was so scared, and my nurse kept saying "its that cold still in your chest." She was right-it just took a really long time!!
I would siggest LIGHT exercising & really drink TONS of fluids too. Those 2 things really helped me get that thick mucus up from that cold.

I am upset that I am not back to baseine, but I think now I can work out more, & really try to get them back up to 80%. Also, this is my worst season for allergies, & the warm spell here in the midwest is not helping!!
Good luck-honestly give it some more time, really do that chest PT, exercising, & TONS of water. I'll be thinking of you!!

Irishgal
10-17-2007, 12:28 AM
Hey! I know how scared you are. I went through the same thing last year. I have always been very healthy, & last year I went in for a tune up (my 4th ever). I could not believe it but my FEV1 actually went down from 67% to 50% after 2 weeks of IV antibiotics (zosyn & amikacin). I was shocked, devistated, & confused. I kept the PICC line in and took a 2 week rest from the antibiotics. Then, started another 2 week course, yet switched one of the antibiotics from zosyn to meropenem (I cannot do tobra). Thank goodness, it went up to 78%, & I held steady at 80% for a year after.

Then last month I dropped to 67% again, but went up to 76% in 3 days. I went home to finish the IV's and guess what? I caught a HORRIBLE cold. FEV1 dropped to 67% again. Therefore, I kept the antibiotics going & it took a full 4 weeks on them before I got back up to 74%, which is where I am now. I also did prednisone for a week which I think really helped. I was so scared, and my nurse kept saying "its that cold still in your chest." She was right-it just took a really long time!!
I would siggest LIGHT exercising & really drink TONS of fluids too. Those 2 things really helped me get that thick mucus up from that cold.

I am upset that I am not back to baseine, but I think now I can work out more, & really try to get them back up to 80%. Also, this is my worst season for allergies, & the warm spell here in the midwest is not helping!!
Good luck-honestly give it some more time, really do that chest PT, exercising, & TONS of water. I'll be thinking of you!!

Irishgal
10-17-2007, 12:28 AM
Hey! I know how scared you are. I went through the same thing last year. I have always been very healthy, & last year I went in for a tune up (my 4th ever). I could not believe it but my FEV1 actually went down from 67% to 50% after 2 weeks of IV antibiotics (zosyn & amikacin). I was shocked, devistated, & confused. I kept the PICC line in and took a 2 week rest from the antibiotics. Then, started another 2 week course, yet switched one of the antibiotics from zosyn to meropenem (I cannot do tobra). Thank goodness, it went up to 78%, & I held steady at 80% for a year after.

Then last month I dropped to 67% again, but went up to 76% in 3 days. I went home to finish the IV's and guess what? I caught a HORRIBLE cold. FEV1 dropped to 67% again. Therefore, I kept the antibiotics going & it took a full 4 weeks on them before I got back up to 74%, which is where I am now. I also did prednisone for a week which I think really helped. I was so scared, and my nurse kept saying "its that cold still in your chest." She was right-it just took a really long time!!
I would siggest LIGHT exercising & really drink TONS of fluids too. Those 2 things really helped me get that thick mucus up from that cold.

I am upset that I am not back to baseine, but I think now I can work out more, & really try to get them back up to 80%. Also, this is my worst season for allergies, & the warm spell here in the midwest is not helping!!
Good luck-honestly give it some more time, really do that chest PT, exercising, & TONS of water. I'll be thinking of you!!

Irishgal
10-17-2007, 12:28 AM
Hey! I know how scared you are. I went through the same thing last year. I have always been very healthy, & last year I went in for a tune up (my 4th ever). I could not believe it but my FEV1 actually went down from 67% to 50% after 2 weeks of IV antibiotics (zosyn & amikacin). I was shocked, devistated, & confused. I kept the PICC line in and took a 2 week rest from the antibiotics. Then, started another 2 week course, yet switched one of the antibiotics from zosyn to meropenem (I cannot do tobra). Thank goodness, it went up to 78%, & I held steady at 80% for a year after.

Then last month I dropped to 67% again, but went up to 76% in 3 days. I went home to finish the IV's and guess what? I caught a HORRIBLE cold. FEV1 dropped to 67% again. Therefore, I kept the antibiotics going & it took a full 4 weeks on them before I got back up to 74%, which is where I am now. I also did prednisone for a week which I think really helped. I was so scared, and my nurse kept saying "its that cold still in your chest." She was right-it just took a really long time!!
I would siggest LIGHT exercising & really drink TONS of fluids too. Those 2 things really helped me get that thick mucus up from that cold.

I am upset that I am not back to baseine, but I think now I can work out more, & really try to get them back up to 80%. Also, this is my worst season for allergies, & the warm spell here in the midwest is not helping!!
Good luck-honestly give it some more time, really do that chest PT, exercising, & TONS of water. I'll be thinking of you!!