Need your advice feeling down!

[sunflower]

Hi,

I have just finished my home IV'S two weeks and four days and I have to go back on them again glad I can do them at home but, my doctor would had prefer me to go in. I just could not do it!!
I cannot believe I really hoped at least a few months before I needed them again. DX's with B.C September 28th 06.
Is this the pattern? I know everyone is different.
I do not feel too bad coughing up blood (very, very small amounts) PFT'S 89% have a wheeze.
I was dx's with Cystic Fibrosis three half years ago. But suffered a lot during my teens and have Asthma.
Just needed to chat and see if there is anyone on line.

Thanks!!
---------------
Sunflower 36yrs old
Cepacia/ABPA/CF

Need company.

 

[sunflower]

Hi,

I have just finished my home IV'S two weeks and four days and I have to go back on them again glad I can do them at home but, my doctor would had prefer me to go in. I just could not do it!!
I cannot believe I really hoped at least a few months before I needed them again. DX's with B.C September 28th 06.
Is this the pattern? I know everyone is different.
I do not feel too bad coughing up blood (very, very small amounts) PFT'S 89% have a wheeze.
I was dx's with Cystic Fibrosis three half years ago. But suffered a lot during my teens and have Asthma.
Just needed to chat and see if there is anyone on line.

Thanks!!
---------------
Sunflower 36yrs old
Cepacia/ABPA/CF

Need company.

 

[sunflower]

Hi,

I have just finished my home IV'S two weeks and four days and I have to go back on them again glad I can do them at home but, my doctor would had prefer me to go in. I just could not do it!!
I cannot believe I really hoped at least a few months before I needed them again. DX's with B.C September 28th 06.
Is this the pattern? I know everyone is different.
I do not feel too bad coughing up blood (very, very small amounts) PFT'S 89% have a wheeze.
I was dx's with Cystic Fibrosis three half years ago. But suffered a lot during my teens and have Asthma.
Just needed to chat and see if there is anyone on line.

Thanks!!
---------------
Sunflower 36yrs old
Cepacia/ABPA/CF

Need company.

 

[NoExcuses]

I don't have B.C. but man, if your FEV1 score is 89% (is that what you mean by PFT's) then you're doing quite well. It seems like your doc is being aggressive with IV treatment to keep you healthy which sounds smart to me.

I hope you feel better soon. IV's are a drag no matter how you look at it <img src="i/expressions/face-icon-small-sad.gif" border="0"> Take care.

 

[NoExcuses]

I don't have B.C. but man, if your FEV1 score is 89% (is that what you mean by PFT's) then you're doing quite well. It seems like your doc is being aggressive with IV treatment to keep you healthy which sounds smart to me.

I hope you feel better soon. IV's are a drag no matter how you look at it <img src="i/expressions/face-icon-small-sad.gif" border="0"> Take care.

 

[NoExcuses]

I don't have B.C. but man, if your FEV1 score is 89% (is that what you mean by PFT's) then you're doing quite well. It seems like your doc is being aggressive with IV treatment to keep you healthy which sounds smart to me.

I hope you feel better soon. IV's are a drag no matter how you look at it <img src="i/expressions/face-icon-small-sad.gif" border="0"> Take care.

 

[Scarlett81]

If your fev1 is 89, that's not bad at all! But, if your doctor feels you can be better than I'd go with that.
IVs aren't fun-sometimes you have to bite the bullet and go get them. With your cepacia, you might need ivs more often-I do short courses of them, but more frequently than most. I haven't needed them in a while. But when I get them, its usually for 2 weeks, every 6 months.
The other thing is-I know being admitted to the hosp is terrible! BUT-if you feel like you can't get enough rest at home, or have too many distractions at home or are tempted to work when you shouldn't be-sometimes being put in the hosp is what you need. Just thought I'd say that. And the docs like to be able to monitor you closely, esp if you just got diagnosed with cepacia.
But you make the final decision, of course. Hang in there!

 

[Scarlett81]

If your fev1 is 89, that's not bad at all! But, if your doctor feels you can be better than I'd go with that.
IVs aren't fun-sometimes you have to bite the bullet and go get them. With your cepacia, you might need ivs more often-I do short courses of them, but more frequently than most. I haven't needed them in a while. But when I get them, its usually for 2 weeks, every 6 months.
The other thing is-I know being admitted to the hosp is terrible! BUT-if you feel like you can't get enough rest at home, or have too many distractions at home or are tempted to work when you shouldn't be-sometimes being put in the hosp is what you need. Just thought I'd say that. And the docs like to be able to monitor you closely, esp if you just got diagnosed with cepacia.
But you make the final decision, of course. Hang in there!

 

[Scarlett81]

If your fev1 is 89, that's not bad at all! But, if your doctor feels you can be better than I'd go with that.
IVs aren't fun-sometimes you have to bite the bullet and go get them. With your cepacia, you might need ivs more often-I do short courses of them, but more frequently than most. I haven't needed them in a while. But when I get them, its usually for 2 weeks, every 6 months.
The other thing is-I know being admitted to the hosp is terrible! BUT-if you feel like you can't get enough rest at home, or have too many distractions at home or are tempted to work when you shouldn't be-sometimes being put in the hosp is what you need. Just thought I'd say that. And the docs like to be able to monitor you closely, esp if you just got diagnosed with cepacia.
But you make the final decision, of course. Hang in there!

 

[Diane]

When i first had cepacia i was on iv's ( sometimes in the hospital sonetimes at home) every 6 months or so. Then i went 2 years without needing iv's. Now a days i seem to be on them more often, Then again these days i dont wait till i cant walk room to room without being short of breath to call the Dr.
If you have 89% pfts, then if i were you i would do everything possible to hold onto that. I started out with high pft's but allowed them to slip by not doing any chest pt, vest or exercise . Since i hadnt done any of that before.... i saw no need to do it after i got cepacia, thinking i had high pft's i figured it would stay that way. I allowed my self to get very sick before i would agree to go on iv's, and finally the message got thru that i need to start getting more aggressive after my pft's dropped into the 40's. If your doctor says its iv time, go with it , he( or she) is just trying to keep you as good as you can be.

 

[Diane]

When i first had cepacia i was on iv's ( sometimes in the hospital sonetimes at home) every 6 months or so. Then i went 2 years without needing iv's. Now a days i seem to be on them more often, Then again these days i dont wait till i cant walk room to room without being short of breath to call the Dr.
If you have 89% pfts, then if i were you i would do everything possible to hold onto that. I started out with high pft's but allowed them to slip by not doing any chest pt, vest or exercise . Since i hadnt done any of that before.... i saw no need to do it after i got cepacia, thinking i had high pft's i figured it would stay that way. I allowed my self to get very sick before i would agree to go on iv's, and finally the message got thru that i need to start getting more aggressive after my pft's dropped into the 40's. If your doctor says its iv time, go with it , he( or she) is just trying to keep you as good as you can be.

 

[Diane]

When i first had cepacia i was on iv's ( sometimes in the hospital sonetimes at home) every 6 months or so. Then i went 2 years without needing iv's. Now a days i seem to be on them more often, Then again these days i dont wait till i cant walk room to room without being short of breath to call the Dr.
If you have 89% pfts, then if i were you i would do everything possible to hold onto that. I started out with high pft's but allowed them to slip by not doing any chest pt, vest or exercise . Since i hadnt done any of that before.... i saw no need to do it after i got cepacia, thinking i had high pft's i figured it would stay that way. I allowed my self to get very sick before i would agree to go on iv's, and finally the message got thru that i need to start getting more aggressive after my pft's dropped into the 40's. If your doctor says its iv time, go with it , he( or she) is just trying to keep you as good as you can be.

 

[KrazyKat]

Maybe because you have only recently been diagnosed with BC, you just need to be agressive and do quite regular IV's to get it under control initially? You may then find after some time it settles down and you then need IV's less often.

i was first diagnosed with BC in May 2005 - I was on Oral AB's every 2-3 months and also had IV's three times in the first year, but since starting up on Roxithromycin once a day two months ago (similar in effect to Azythromycin) and doing regular phsyio, exercise and taking vitamins, my health is now stable and I'm feeling better than I have in years.

I know it seems awful when you are in the midst of what seems like constant infections, but stick with it, take real good care of yourself (plenty of fruit and veges, load of good sleep etc), do everything the doc tells you to do and try to see it as a 'temporary' but necessary focus on your health.

With a bit of luck you too will stablise soon and things will hopefully go back to being more normal and less intense again.

 

[KrazyKat]

Maybe because you have only recently been diagnosed with BC, you just need to be agressive and do quite regular IV's to get it under control initially? You may then find after some time it settles down and you then need IV's less often.

i was first diagnosed with BC in May 2005 - I was on Oral AB's every 2-3 months and also had IV's three times in the first year, but since starting up on Roxithromycin once a day two months ago (similar in effect to Azythromycin) and doing regular phsyio, exercise and taking vitamins, my health is now stable and I'm feeling better than I have in years.

I know it seems awful when you are in the midst of what seems like constant infections, but stick with it, take real good care of yourself (plenty of fruit and veges, load of good sleep etc), do everything the doc tells you to do and try to see it as a 'temporary' but necessary focus on your health.

With a bit of luck you too will stablise soon and things will hopefully go back to being more normal and less intense again.

 

[KrazyKat]

Maybe because you have only recently been diagnosed with BC, you just need to be agressive and do quite regular IV's to get it under control initially? You may then find after some time it settles down and you then need IV's less often.

i was first diagnosed with BC in May 2005 - I was on Oral AB's every 2-3 months and also had IV's three times in the first year, but since starting up on Roxithromycin once a day two months ago (similar in effect to Azythromycin) and doing regular phsyio, exercise and taking vitamins, my health is now stable and I'm feeling better than I have in years.

I know it seems awful when you are in the midst of what seems like constant infections, but stick with it, take real good care of yourself (plenty of fruit and veges, load of good sleep etc), do everything the doc tells you to do and try to see it as a 'temporary' but necessary focus on your health.

With a bit of luck you too will stablise soon and things will hopefully go back to being more normal and less intense again.

 

[rubyanmilly]

I have b cepacia and i have IVS about every three months. My PFT'S are 29% but still doin very well. Sometimes the doctor will give you ivs again quikely to make sure your infection has gone. Probably you wont need ivs again for a while. Hope you feel better soon.

Ruby 24yrs old

 

[rubyanmilly]

I have b cepacia and i have IVS about every three months. My PFT'S are 29% but still doin very well. Sometimes the doctor will give you ivs again quikely to make sure your infection has gone. Probably you wont need ivs again for a while. Hope you feel better soon.

Ruby 24yrs old

 

[rubyanmilly]

I have b cepacia and i have IVS about every three months. My PFT'S are 29% but still doin very well. Sometimes the doctor will give you ivs again quikely to make sure your infection has gone. Probably you wont need ivs again for a while. Hope you feel better soon.

Ruby 24yrs old

 

[sunflower]

Thank you all for replying. I have taking on vaulable information and what I am getting from you all is keep up the physo. I am doing twice a day.
Looking after myself and doing what the doc tells me to.
Thanks for your support on this.

-------------------------
sunflower
36yrs CF/Asthma/B.Cepacia/ABPA

 

[sunflower]

Thank you all for replying. I have taking on vaulable information and what I am getting from you all is keep up the physo. I am doing twice a day.
Looking after myself and doing what the doc tells me to.
Thanks for your support on this.

-------------------------
sunflower
36yrs CF/Asthma/B.Cepacia/ABPA