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

[Charlene]

I usually go about 8 weeks between antibiotic iv/ I have been really fortunate. I can imagine how depressed you must be right now. I bet alot of it is just overdoing it. Make sure that you are telling your dr how you are dragging and they can keep a close eye on you.
Good luck!

 

[Charlene]

I usually go about 8 weeks between antibiotic iv/ I have been really fortunate. I can imagine how depressed you must be right now. I bet alot of it is just overdoing it. Make sure that you are telling your dr how you are dragging and they can keep a close eye on you.
Good luck!

 

[Charlene]

I usually go about 8 weeks between antibiotic iv/ I have been really fortunate. I can imagine how depressed you must be right now. I bet alot of it is just overdoing it. Make sure that you are telling your dr how you are dragging and they can keep a close eye on you.
Good luck!

 

[Charlene]

I usually go about 8 weeks between antibiotic iv/ I have been really fortunate. I can imagine how depressed you must be right now. I bet alot of it is just overdoing it. Make sure that you are telling your dr how you are dragging and they can keep a close eye on you.
Good luck!

 

[Charlene]

I usually go about 8 weeks between antibiotic iv/ I have been really fortunate. I can imagine how depressed you must be right now. I bet alot of it is just overdoing it. Make sure that you are telling your dr how you are dragging and they can keep a close eye on you.
<br />Good luck!

 

[ladybug]

nurse just called and is getting me in for more pfts and appt. with doc on thursday morning. will keep you posted. its a fellow and sometimes i get nervous seeing them versus "the" cf doc, but he's the only one available.

i guess i'm still unsure what a pft (probably the same result as last week would be my guess) and the results of my cultures (which always show p.a.) will tell them. overall, once again, i think it will be my decision based on how i feel. but, how i feel could be based on overdoing it with this move and not necessarily an infection. urgh.

 

[ladybug]

nurse just called and is getting me in for more pfts and appt. with doc on thursday morning. will keep you posted. its a fellow and sometimes i get nervous seeing them versus "the" cf doc, but he's the only one available.

i guess i'm still unsure what a pft (probably the same result as last week would be my guess) and the results of my cultures (which always show p.a.) will tell them. overall, once again, i think it will be my decision based on how i feel. but, how i feel could be based on overdoing it with this move and not necessarily an infection. urgh.

 

[ladybug]

nurse just called and is getting me in for more pfts and appt. with doc on thursday morning. will keep you posted. its a fellow and sometimes i get nervous seeing them versus "the" cf doc, but he's the only one available.

i guess i'm still unsure what a pft (probably the same result as last week would be my guess) and the results of my cultures (which always show p.a.) will tell them. overall, once again, i think it will be my decision based on how i feel. but, how i feel could be based on overdoing it with this move and not necessarily an infection. urgh.

 

[ladybug]

nurse just called and is getting me in for more pfts and appt. with doc on thursday morning. will keep you posted. its a fellow and sometimes i get nervous seeing them versus "the" cf doc, but he's the only one available.

i guess i'm still unsure what a pft (probably the same result as last week would be my guess) and the results of my cultures (which always show p.a.) will tell them. overall, once again, i think it will be my decision based on how i feel. but, how i feel could be based on overdoing it with this move and not necessarily an infection. urgh.

 

[ladybug]

nurse just called and is getting me in for more pfts and appt. with doc on thursday morning. will keep you posted. its a fellow and sometimes i get nervous seeing them versus "the" cf doc, but he's the only one available.
<br />
<br />i guess i'm still unsure what a pft (probably the same result as last week would be my guess) and the results of my cultures (which always show p.a.) will tell them. overall, once again, i think it will be my decision based on how i feel. but, how i feel could be based on overdoing it with this move and not necessarily an infection. urgh.

 

[erock77]

I don't think it's too strange you cough more throughout the day then during treatments. I argued w/ my docs for years that b/c I had a productive cough throughout the day I didn't need airway clearance. Eventually they convinced me it'll loosen stuff up, even if I don't cough it up then.
Maybe some tobi, it often makes my mucus feel juicier.

Maybe for your appt ask for an xray or some additional means to diagnose what the issue is. Especially if you just did pft's & sputum last week.

Also how big was the bleed? Did you feel gurgling for minutes, seconds? A teaspoon? A cup? I'm a long time chronic bleeder and there are DEFINITELY environmental factors that set off bleeding which include so far: bleach/chlorine, excessive mold, drinking alcohol, aspirin (or any blood thinner), and sometimes it's completely random & I haven't figured out the culprit. However whenever I just have a bleed, my pft's are down 5% or so for the next couple days.

 

[erock77]

I don't think it's too strange you cough more throughout the day then during treatments. I argued w/ my docs for years that b/c I had a productive cough throughout the day I didn't need airway clearance. Eventually they convinced me it'll loosen stuff up, even if I don't cough it up then.
Maybe some tobi, it often makes my mucus feel juicier.

Maybe for your appt ask for an xray or some additional means to diagnose what the issue is. Especially if you just did pft's & sputum last week.

Also how big was the bleed? Did you feel gurgling for minutes, seconds? A teaspoon? A cup? I'm a long time chronic bleeder and there are DEFINITELY environmental factors that set off bleeding which include so far: bleach/chlorine, excessive mold, drinking alcohol, aspirin (or any blood thinner), and sometimes it's completely random & I haven't figured out the culprit. However whenever I just have a bleed, my pft's are down 5% or so for the next couple days.

 

[erock77]

I don't think it's too strange you cough more throughout the day then during treatments. I argued w/ my docs for years that b/c I had a productive cough throughout the day I didn't need airway clearance. Eventually they convinced me it'll loosen stuff up, even if I don't cough it up then.
Maybe some tobi, it often makes my mucus feel juicier.

Maybe for your appt ask for an xray or some additional means to diagnose what the issue is. Especially if you just did pft's & sputum last week.

Also how big was the bleed? Did you feel gurgling for minutes, seconds? A teaspoon? A cup? I'm a long time chronic bleeder and there are DEFINITELY environmental factors that set off bleeding which include so far: bleach/chlorine, excessive mold, drinking alcohol, aspirin (or any blood thinner), and sometimes it's completely random & I haven't figured out the culprit. However whenever I just have a bleed, my pft's are down 5% or so for the next couple days.

 

[erock77]

I don't think it's too strange you cough more throughout the day then during treatments. I argued w/ my docs for years that b/c I had a productive cough throughout the day I didn't need airway clearance. Eventually they convinced me it'll loosen stuff up, even if I don't cough it up then.
Maybe some tobi, it often makes my mucus feel juicier.

Maybe for your appt ask for an xray or some additional means to diagnose what the issue is. Especially if you just did pft's & sputum last week.

Also how big was the bleed? Did you feel gurgling for minutes, seconds? A teaspoon? A cup? I'm a long time chronic bleeder and there are DEFINITELY environmental factors that set off bleeding which include so far: bleach/chlorine, excessive mold, drinking alcohol, aspirin (or any blood thinner), and sometimes it's completely random & I haven't figured out the culprit. However whenever I just have a bleed, my pft's are down 5% or so for the next couple days.

 

[erock77]

I don't think it's too strange you cough more throughout the day then during treatments. I argued w/ my docs for years that b/c I had a productive cough throughout the day I didn't need airway clearance. Eventually they convinced me it'll loosen stuff up, even if I don't cough it up then.
<br />Maybe some tobi, it often makes my mucus feel juicier.
<br />
<br />Maybe for your appt ask for an xray or some additional means to diagnose what the issue is. Especially if you just did pft's & sputum last week.
<br />
<br />Also how big was the bleed? Did you feel gurgling for minutes, seconds? A teaspoon? A cup? I'm a long time chronic bleeder and there are DEFINITELY environmental factors that set off bleeding which include so far: bleach/chlorine, excessive mold, drinking alcohol, aspirin (or any blood thinner), and sometimes it's completely random & I haven't figured out the culprit. However whenever I just have a bleed, my pft's are down 5% or so for the next couple days.

 

[ladybug]

thanks, Eric!

yes, i just did a chest x-ray monday, so they'll have those results as well. short of a CT scan, we've covered all our bases with diagnostic testing at this point i think. but, to put them all together and figure out what's going on (if anything), THAT is the riddle. ha ha.

the bleed was for about 20 minutes with rumbling in my chest causing me to cough. when i relaxed and focused on my breathing and kinda tried to stifle the cough (on the way to the ER), it stopped on its own. i would say likely a teaspoon or two, but hard to tell cause i was swallowing (i know, gross) and spitting into kleenex, so not a good way to tell how much that way.

its interesting your pfts are low after a bleed (for a few days). i did my pfts 4 days after my bleed and was really nervous to do them and have a bleed again, so maybe that was part of it... my anxiety to blow too hard? anyway, will be doing pft again tomorrow morning so we'll see.

thanks for your input!!!

 

[ladybug]

thanks, Eric!

yes, i just did a chest x-ray monday, so they'll have those results as well. short of a CT scan, we've covered all our bases with diagnostic testing at this point i think. but, to put them all together and figure out what's going on (if anything), THAT is the riddle. ha ha.

the bleed was for about 20 minutes with rumbling in my chest causing me to cough. when i relaxed and focused on my breathing and kinda tried to stifle the cough (on the way to the ER), it stopped on its own. i would say likely a teaspoon or two, but hard to tell cause i was swallowing (i know, gross) and spitting into kleenex, so not a good way to tell how much that way.

its interesting your pfts are low after a bleed (for a few days). i did my pfts 4 days after my bleed and was really nervous to do them and have a bleed again, so maybe that was part of it... my anxiety to blow too hard? anyway, will be doing pft again tomorrow morning so we'll see.

thanks for your input!!!

 

[ladybug]

thanks, Eric!

yes, i just did a chest x-ray monday, so they'll have those results as well. short of a CT scan, we've covered all our bases with diagnostic testing at this point i think. but, to put them all together and figure out what's going on (if anything), THAT is the riddle. ha ha.

the bleed was for about 20 minutes with rumbling in my chest causing me to cough. when i relaxed and focused on my breathing and kinda tried to stifle the cough (on the way to the ER), it stopped on its own. i would say likely a teaspoon or two, but hard to tell cause i was swallowing (i know, gross) and spitting into kleenex, so not a good way to tell how much that way.

its interesting your pfts are low after a bleed (for a few days). i did my pfts 4 days after my bleed and was really nervous to do them and have a bleed again, so maybe that was part of it... my anxiety to blow too hard? anyway, will be doing pft again tomorrow morning so we'll see.

thanks for your input!!!

 

[ladybug]

thanks, Eric!

yes, i just did a chest x-ray monday, so they'll have those results as well. short of a CT scan, we've covered all our bases with diagnostic testing at this point i think. but, to put them all together and figure out what's going on (if anything), THAT is the riddle. ha ha.

the bleed was for about 20 minutes with rumbling in my chest causing me to cough. when i relaxed and focused on my breathing and kinda tried to stifle the cough (on the way to the ER), it stopped on its own. i would say likely a teaspoon or two, but hard to tell cause i was swallowing (i know, gross) and spitting into kleenex, so not a good way to tell how much that way.

its interesting your pfts are low after a bleed (for a few days). i did my pfts 4 days after my bleed and was really nervous to do them and have a bleed again, so maybe that was part of it... my anxiety to blow too hard? anyway, will be doing pft again tomorrow morning so we'll see.

thanks for your input!!!

 

[ladybug]

thanks, Eric!
<br />
<br />yes, i just did a chest x-ray monday, so they'll have those results as well. short of a CT scan, we've covered all our bases with diagnostic testing at this point i think. but, to put them all together and figure out what's going on (if anything), THAT is the riddle. ha ha.
<br />
<br />the bleed was for about 20 minutes with rumbling in my chest causing me to cough. when i relaxed and focused on my breathing and kinda tried to stifle the cough (on the way to the ER), it stopped on its own. i would say likely a teaspoon or two, but hard to tell cause i was swallowing (i know, gross) and spitting into kleenex, so not a good way to tell how much that way.
<br />
<br />its interesting your pfts are low after a bleed (for a few days). i did my pfts 4 days after my bleed and was really nervous to do them and have a bleed again, so maybe that was part of it... my anxiety to blow too hard? anyway, will be doing pft again tomorrow morning so we'll see.
<br />
<br />thanks for your input!!!