Has this happened to you and if so, how often???

ladybug · Aug 25, 2009

Thanks, everyone.

Yeah, I'm doing my treatments religiously like always. I am on h.s. once a day (as usual) and its not bringing anything up (which is also pretty normal as h.s. usually didn't make me cough). I'm also on colistin right now.

I'm not on antidepressants, but since we moved here, there is a consult to psych in for me to help with my anxiety. The depression is a direct result of feeling sicker. If it weren't for that, I would feel happy and excited to be in our new home.

I have to say I wasn't impressed with my past docs not getting on top of things right away and getting me on the CORRECT meds from the get go.... Six weeks just to figure out the correct drug combo seems ridiculous. And, even then, it didn't help entirely.

As for the docs here now, I just had my very first appt. with them last weds. and that is when we found out my FEV1 was so low. It was also a week after my hemop incident. My bloodwork came back high in WBC (as mentioned) and low on the level that measures overall nutrition. The nurse found that odd since my protein is really good (high actually), but maybe its cause I'm not getting enough fruits and veggies with the moving and eating crappy? I do still take my ADEK vit twice a day though. Those levels aren't back yet.

Anyway, just responses to your questions. I'm still wondering how others have coped with such short time in between IVs and if sometimes that's just a "bad year" and it corrects itself when you find out the problem and treat it CORRECTLY.

Thanks,

ladybug · Aug 25, 2009

Thanks, everyone.

Yeah, I'm doing my treatments religiously like always. I am on h.s. once a day (as usual) and its not bringing anything up (which is also pretty normal as h.s. usually didn't make me cough). I'm also on colistin right now.

I'm not on antidepressants, but since we moved here, there is a consult to psych in for me to help with my anxiety. The depression is a direct result of feeling sicker. If it weren't for that, I would feel happy and excited to be in our new home.

I have to say I wasn't impressed with my past docs not getting on top of things right away and getting me on the CORRECT meds from the get go.... Six weeks just to figure out the correct drug combo seems ridiculous. And, even then, it didn't help entirely.

As for the docs here now, I just had my very first appt. with them last weds. and that is when we found out my FEV1 was so low. It was also a week after my hemop incident. My bloodwork came back high in WBC (as mentioned) and low on the level that measures overall nutrition. The nurse found that odd since my protein is really good (high actually), but maybe its cause I'm not getting enough fruits and veggies with the moving and eating crappy? I do still take my ADEK vit twice a day though. Those levels aren't back yet.

Anyway, just responses to your questions. I'm still wondering how others have coped with such short time in between IVs and if sometimes that's just a "bad year" and it corrects itself when you find out the problem and treat it CORRECTLY.

Thanks,

ladybug · Aug 25, 2009

Thanks, everyone.

Yeah, I'm doing my treatments religiously like always. I am on h.s. once a day (as usual) and its not bringing anything up (which is also pretty normal as h.s. usually didn't make me cough). I'm also on colistin right now.

I'm not on antidepressants, but since we moved here, there is a consult to psych in for me to help with my anxiety. The depression is a direct result of feeling sicker. If it weren't for that, I would feel happy and excited to be in our new home.

I have to say I wasn't impressed with my past docs not getting on top of things right away and getting me on the CORRECT meds from the get go.... Six weeks just to figure out the correct drug combo seems ridiculous. And, even then, it didn't help entirely.

As for the docs here now, I just had my very first appt. with them last weds. and that is when we found out my FEV1 was so low. It was also a week after my hemop incident. My bloodwork came back high in WBC (as mentioned) and low on the level that measures overall nutrition. The nurse found that odd since my protein is really good (high actually), but maybe its cause I'm not getting enough fruits and veggies with the moving and eating crappy? I do still take my ADEK vit twice a day though. Those levels aren't back yet.

Anyway, just responses to your questions. I'm still wondering how others have coped with such short time in between IVs and if sometimes that's just a "bad year" and it corrects itself when you find out the problem and treat it CORRECTLY.

Thanks,

ladybug · Aug 25, 2009

Thanks, everyone.

Yeah, I'm doing my treatments religiously like always. I am on h.s. once a day (as usual) and its not bringing anything up (which is also pretty normal as h.s. usually didn't make me cough). I'm also on colistin right now.

I'm not on antidepressants, but since we moved here, there is a consult to psych in for me to help with my anxiety. The depression is a direct result of feeling sicker. If it weren't for that, I would feel happy and excited to be in our new home.

I have to say I wasn't impressed with my past docs not getting on top of things right away and getting me on the CORRECT meds from the get go.... Six weeks just to figure out the correct drug combo seems ridiculous. And, even then, it didn't help entirely.

As for the docs here now, I just had my very first appt. with them last weds. and that is when we found out my FEV1 was so low. It was also a week after my hemop incident. My bloodwork came back high in WBC (as mentioned) and low on the level that measures overall nutrition. The nurse found that odd since my protein is really good (high actually), but maybe its cause I'm not getting enough fruits and veggies with the moving and eating crappy? I do still take my ADEK vit twice a day though. Those levels aren't back yet.

Anyway, just responses to your questions. I'm still wondering how others have coped with such short time in between IVs and if sometimes that's just a "bad year" and it corrects itself when you find out the problem and treat it CORRECTLY.

Thanks,

ladybug · Aug 25, 2009

Thanks, everyone.
 
 Yeah, I'm doing my treatments religiously like always. I am on h.s. once a day (as usual) and its not bringing anything up (which is also pretty normal as h.s. usually didn't make me cough). I'm also on colistin right now.
 
 I'm not on antidepressants, but since we moved here, there is a consult to psych in for me to help with my anxiety. The depression is a direct result of feeling sicker. If it weren't for that, I would feel happy and excited to be in our new home.
 
 I have to say I wasn't impressed with my past docs not getting on top of things right away and getting me on the CORRECT meds from the get go.... Six weeks just to figure out the correct drug combo seems ridiculous. And, even then, it didn't help entirely.
 
 As for the docs here now, I just had my very first appt. with them last weds. and that is when we found out my FEV1 was so low. It was also a week after my hemop incident. My bloodwork came back high in WBC (as mentioned) and low on the level that measures overall nutrition. The nurse found that odd since my protein is really good (high actually), but maybe its cause I'm not getting enough fruits and veggies with the moving and eating crappy? I do still take my ADEK vit twice a day though. Those levels aren't back yet.
 
 Anyway, just responses to your questions. I'm still wondering how others have coped with such short time in between IVs and if sometimes that's just a "bad year" and it corrects itself when you find out the problem and treat it CORRECTLY.
 
 Thanks,

ladybug · Aug 25, 2009

OH yeah, and Eric, I do two vests a day (which is usual for me). To be honest, NONE of my treatments are infamous for helping me cough stuff up when I do them. For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

I also feel everything is SUPER dry, which is weird cause we moved from a dessert to southern (humid) texas. hmmm....

Finally, with regard to exercise.... well, yeah, I haven't excercised as usual since April when DH got home from deployment. We've been vacationing, packing, moving, unpacking and just haven't done it. I'm ashamed cause I used to jog at least 3 times a week and even was starting to do weightlifting. Urgh.

ladybug · Aug 25, 2009

OH yeah, and Eric, I do two vests a day (which is usual for me). To be honest, NONE of my treatments are infamous for helping me cough stuff up when I do them. For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

I also feel everything is SUPER dry, which is weird cause we moved from a dessert to southern (humid) texas. hmmm....

Finally, with regard to exercise.... well, yeah, I haven't excercised as usual since April when DH got home from deployment. We've been vacationing, packing, moving, unpacking and just haven't done it. I'm ashamed cause I used to jog at least 3 times a week and even was starting to do weightlifting. Urgh.

ladybug · Aug 25, 2009

OH yeah, and Eric, I do two vests a day (which is usual for me). To be honest, NONE of my treatments are infamous for helping me cough stuff up when I do them. For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

I also feel everything is SUPER dry, which is weird cause we moved from a dessert to southern (humid) texas. hmmm....

Finally, with regard to exercise.... well, yeah, I haven't excercised as usual since April when DH got home from deployment. We've been vacationing, packing, moving, unpacking and just haven't done it. I'm ashamed cause I used to jog at least 3 times a week and even was starting to do weightlifting. Urgh.

ladybug · Aug 25, 2009

OH yeah, and Eric, I do two vests a day (which is usual for me). To be honest, NONE of my treatments are infamous for helping me cough stuff up when I do them. For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

I also feel everything is SUPER dry, which is weird cause we moved from a dessert to southern (humid) texas. hmmm....

Finally, with regard to exercise.... well, yeah, I haven't excercised as usual since April when DH got home from deployment. We've been vacationing, packing, moving, unpacking and just haven't done it. I'm ashamed cause I used to jog at least 3 times a week and even was starting to do weightlifting. Urgh.

ladybug · Aug 25, 2009

OH yeah, and Eric, I do two vests a day (which is usual for me). To be honest, NONE of my treatments are infamous for helping me cough stuff up when I do them. For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?
 
 I also feel everything is SUPER dry, which is weird cause we moved from a dessert to southern (humid) texas. hmmm....
 
 Finally, with regard to exercise.... well, yeah, I haven't excercised as usual since April when DH got home from deployment. We've been vacationing, packing, moving, unpacking and just haven't done it. I'm ashamed cause I used to jog at least 3 times a week and even was starting to do weightlifting. Urgh.

saveferris2009 · Aug 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: ladybug

For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

</end quote></div>

I'm the same way. I cough more than most CFer's I know. BUt I don't get much up at the time of vesting...

saveferris2009 · Aug 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: ladybug

For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

</end quote></div>

I'm the same way. I cough more than most CFer's I know. BUt I don't get much up at the time of vesting...

saveferris2009 · Aug 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: ladybug

For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

</end quote></div>

I'm the same way. I cough more than most CFer's I know. BUt I don't get much up at the time of vesting...

saveferris2009 · Aug 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: ladybug

For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?

</end quote>

I'm the same way. I cough more than most CFer's I know. BUt I don't get much up at the time of vesting...

saveferris2009 · Aug 25, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: ladybug
 
 For some reason I just cough things up throughout the day usually, not during or directly after treatment time. Maybe that's strange?
 
 
 </end quote>
 
 I'm the same way. I cough more than most CFer's I know. BUt I don't get much up at the time of vesting...

ladybug · Aug 25, 2009

interesting, amy. i wonder why that is? my docs are always perplexed when i tell them this since they claim i should be coughing most during the treatment. hmmm...

i was hoping you'd see my post and perhaps comment on what you (or your wise folks at the U) would do/say in this situation? i know you're very proactive and so is the U, so i'm wondering how long they'd wait to go back on IVs? and how much they allow the possibility of environment to play with regard to symptoms? i generally don't take the approach they do with regard to preventative clean outs, etc. but at this point, i'm open to a lot more suggestions.

anyway, if you could IM me or just post on here what your thoughts are, that would be great. i'm just really nervous about that 5-week window and maybe doing things a bit too hastily... as in, couldn't it be something environmental causing the bleed, sob, exhaustion, lack of cough? i am not trying to deny something is going on, but this, for me, is the toughest part of cf (not knowing what time is "time") it bothers me a lot too that i was on IV abx for 6 full weeks last time. with allergies, resistance, and adverse reactions building up the more you do meds, i worry about that too.

thanks again...

ladybug · Aug 25, 2009

interesting, amy. i wonder why that is? my docs are always perplexed when i tell them this since they claim i should be coughing most during the treatment. hmmm...

i was hoping you'd see my post and perhaps comment on what you (or your wise folks at the U) would do/say in this situation? i know you're very proactive and so is the U, so i'm wondering how long they'd wait to go back on IVs? and how much they allow the possibility of environment to play with regard to symptoms? i generally don't take the approach they do with regard to preventative clean outs, etc. but at this point, i'm open to a lot more suggestions.

anyway, if you could IM me or just post on here what your thoughts are, that would be great. i'm just really nervous about that 5-week window and maybe doing things a bit too hastily... as in, couldn't it be something environmental causing the bleed, sob, exhaustion, lack of cough? i am not trying to deny something is going on, but this, for me, is the toughest part of cf (not knowing what time is "time") it bothers me a lot too that i was on IV abx for 6 full weeks last time. with allergies, resistance, and adverse reactions building up the more you do meds, i worry about that too.

thanks again...

ladybug · Aug 25, 2009

interesting, amy. i wonder why that is? my docs are always perplexed when i tell them this since they claim i should be coughing most during the treatment. hmmm...

i was hoping you'd see my post and perhaps comment on what you (or your wise folks at the U) would do/say in this situation? i know you're very proactive and so is the U, so i'm wondering how long they'd wait to go back on IVs? and how much they allow the possibility of environment to play with regard to symptoms? i generally don't take the approach they do with regard to preventative clean outs, etc. but at this point, i'm open to a lot more suggestions.

anyway, if you could IM me or just post on here what your thoughts are, that would be great. i'm just really nervous about that 5-week window and maybe doing things a bit too hastily... as in, couldn't it be something environmental causing the bleed, sob, exhaustion, lack of cough? i am not trying to deny something is going on, but this, for me, is the toughest part of cf (not knowing what time is "time") it bothers me a lot too that i was on IV abx for 6 full weeks last time. with allergies, resistance, and adverse reactions building up the more you do meds, i worry about that too.

thanks again...

ladybug · Aug 25, 2009

interesting, amy. i wonder why that is? my docs are always perplexed when i tell them this since they claim i should be coughing most during the treatment. hmmm...

i was hoping you'd see my post and perhaps comment on what you (or your wise folks at the U) would do/say in this situation? i know you're very proactive and so is the U, so i'm wondering how long they'd wait to go back on IVs? and how much they allow the possibility of environment to play with regard to symptoms? i generally don't take the approach they do with regard to preventative clean outs, etc. but at this point, i'm open to a lot more suggestions.

anyway, if you could IM me or just post on here what your thoughts are, that would be great. i'm just really nervous about that 5-week window and maybe doing things a bit too hastily... as in, couldn't it be something environmental causing the bleed, sob, exhaustion, lack of cough? i am not trying to deny something is going on, but this, for me, is the toughest part of cf (not knowing what time is "time") it bothers me a lot too that i was on IV abx for 6 full weeks last time. with allergies, resistance, and adverse reactions building up the more you do meds, i worry about that too.

thanks again...

ladybug · Aug 25, 2009

interesting, amy. i wonder why that is? my docs are always perplexed when i tell them this since they claim i should be coughing most during the treatment. hmmm...
 
 i was hoping you'd see my post and perhaps comment on what you (or your wise folks at the U) would do/say in this situation? i know you're very proactive and so is the U, so i'm wondering how long they'd wait to go back on IVs? and how much they allow the possibility of environment to play with regard to symptoms? i generally don't take the approach they do with regard to preventative clean outs, etc. but at this point, i'm open to a lot more suggestions.
 
 anyway, if you could IM me or just post on here what your thoughts are, that would be great. i'm just really nervous about that 5-week window and maybe doing things a bit too hastily... as in, couldn't it be something environmental causing the bleed, sob, exhaustion, lack of cough? i am not trying to deny something is going on, but this, for me, is the toughest part of cf (not knowing what time is "time") it bothers me a lot too that i was on IV abx for 6 full weeks last time. with allergies, resistance, and adverse reactions building up the more you do meds, i worry about that too.
 
 thanks again...

Has this happened to you and if so, how often???

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