Drop in PFT's Does this sound werid?

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

yeah i take ya point but ya cant put of the inevitibale no matter how aggresive ya are with ya treatment ya lung function will go down</end quote></div>


This is sooooooooo true and if SHE didnt really care I would say OK, but it almost seems out of her hands in a way as she butts heads with the doctor. Deciding for yourself not to do something versus the healthcare professional is different. Yes no matter what it will progress .... the joys of CF.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

yeah i take ya point but ya cant put of the inevitibale no matter how aggresive ya are with ya treatment ya lung function will go down</end quote></div>


This is sooooooooo true and if SHE didnt really care I would say OK, but it almost seems out of her hands in a way as she butts heads with the doctor. Deciding for yourself not to do something versus the healthcare professional is different. Yes no matter what it will progress .... the joys of CF.

 

[Ricky123]

ya not wrong its a shitty thing to have to face every day knowing how hard ya try ya on a loosing battle i really feel for some cf people with the amount of shite they have to do each day just to feel healthy especially those whose fev 1 are in the 50s and lower

 

[Ricky123]

ya not wrong its a shitty thing to have to face every day knowing how hard ya try ya on a loosing battle i really feel for some cf people with the amount of shite they have to do each day just to feel healthy especially those whose fev 1 are in the 50s and lower

 

[Ricky123]

ya not wrong its a shitty thing to have to face every day knowing how hard ya try ya on a loosing battle i really feel for some cf people with the amount of shite they have to do each day just to feel healthy especially those whose fev 1 are in the 50s and lower

 

[jfarel]

Unless you are on IV's already 3-4 times a year, I don't see a problem with trying them again, especially if you a drop of 4 or 5 percent in pft's.

Remember, in Europe its common to get IV's every 3 months regardless of your health status (if you have cf of course).

GOSH! I wish I had been as smart as you 10 years ago. If I had been as aggressive I probably wouldn't be as bad off as I am today.

I agree with Amy, perhaps your lungs are declining, but don't give up without a fight, especially if its been several months without IV's.

 

[jfarel]

Unless you are on IV's already 3-4 times a year, I don't see a problem with trying them again, especially if you a drop of 4 or 5 percent in pft's.

Remember, in Europe its common to get IV's every 3 months regardless of your health status (if you have cf of course).

GOSH! I wish I had been as smart as you 10 years ago. If I had been as aggressive I probably wouldn't be as bad off as I am today.

I agree with Amy, perhaps your lungs are declining, but don't give up without a fight, especially if its been several months without IV's.

 

[jfarel]

Unless you are on IV's already 3-4 times a year, I don't see a problem with trying them again, especially if you a drop of 4 or 5 percent in pft's.

Remember, in Europe its common to get IV's every 3 months regardless of your health status (if you have cf of course).

GOSH! I wish I had been as smart as you 10 years ago. If I had been as aggressive I probably wouldn't be as bad off as I am today.

I agree with Amy, perhaps your lungs are declining, but don't give up without a fight, especially if its been several months without IV's.

 

[AnD]

The other thing I noticed in your post was that they had you on one iv med? Were you still doing the orals? Whenever I've had iv's, it has always been 2 meds at the same time, and no orals. If I am doing an inhaled med, I can do an oral with it if I feel like I need it. For me, if I am having a flare up, it's oral meds, inhaled, (usually give both Colistin and Tobi-first a round of one, then a short break, then give the other a try if needed, and if the flare up isn't acute) possibly with an oral, and if that doesn't get me feeling better, then it's iv time. Keep in mind, that this is just how it usually goes for me, but if it helps you too...

Just something to think about, my doctor put me on Advair when I was having similar symptoms, and antibiotics didn't seem to be helping. Turns out, my allergies were causing me a lot of inflamation that my allergy meds weren't handling. If I miss my Advair, I know it really quickly, and groan about how stupid it was to forget it the rest of the day. <img src="">


Also, I think the point is that she feels bad, has symptoms, has been fighting something for the last 7 months, and the doctor has stopped trying to treat it and is telling her to just "be happy that she's doing better than most". Um, no- the goal should always be to be doing the best and staying at the best you possibly can for <i>you</i>. If she was feeling okay, that would be one thing...but she's not.

Oh, the how much of a drop... I know my drs. don't mind a 2 or 3% drop nearly as much as I do. They look at it and say "Really close to baseline- that's good" whereas I look at it and say "3% consistant drop this year, times 3 years, at this rate, that would be almost a 10% drop in 3 years- what can we do to get it back up?" I want that 2 or 3 % back- today! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[AnD]

The other thing I noticed in your post was that they had you on one iv med? Were you still doing the orals? Whenever I've had iv's, it has always been 2 meds at the same time, and no orals. If I am doing an inhaled med, I can do an oral with it if I feel like I need it. For me, if I am having a flare up, it's oral meds, inhaled, (usually give both Colistin and Tobi-first a round of one, then a short break, then give the other a try if needed, and if the flare up isn't acute) possibly with an oral, and if that doesn't get me feeling better, then it's iv time. Keep in mind, that this is just how it usually goes for me, but if it helps you too...

Just something to think about, my doctor put me on Advair when I was having similar symptoms, and antibiotics didn't seem to be helping. Turns out, my allergies were causing me a lot of inflamation that my allergy meds weren't handling. If I miss my Advair, I know it really quickly, and groan about how stupid it was to forget it the rest of the day. <img src="">


Also, I think the point is that she feels bad, has symptoms, has been fighting something for the last 7 months, and the doctor has stopped trying to treat it and is telling her to just "be happy that she's doing better than most". Um, no- the goal should always be to be doing the best and staying at the best you possibly can for <i>you</i>. If she was feeling okay, that would be one thing...but she's not.

Oh, the how much of a drop... I know my drs. don't mind a 2 or 3% drop nearly as much as I do. They look at it and say "Really close to baseline- that's good" whereas I look at it and say "3% consistant drop this year, times 3 years, at this rate, that would be almost a 10% drop in 3 years- what can we do to get it back up?" I want that 2 or 3 % back- today! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[AnD]

The other thing I noticed in your post was that they had you on one iv med? Were you still doing the orals? Whenever I've had iv's, it has always been 2 meds at the same time, and no orals. If I am doing an inhaled med, I can do an oral with it if I feel like I need it. For me, if I am having a flare up, it's oral meds, inhaled, (usually give both Colistin and Tobi-first a round of one, then a short break, then give the other a try if needed, and if the flare up isn't acute) possibly with an oral, and if that doesn't get me feeling better, then it's iv time. Keep in mind, that this is just how it usually goes for me, but if it helps you too...

Just something to think about, my doctor put me on Advair when I was having similar symptoms, and antibiotics didn't seem to be helping. Turns out, my allergies were causing me a lot of inflamation that my allergy meds weren't handling. If I miss my Advair, I know it really quickly, and groan about how stupid it was to forget it the rest of the day. <img src="">


Also, I think the point is that she feels bad, has symptoms, has been fighting something for the last 7 months, and the doctor has stopped trying to treat it and is telling her to just "be happy that she's doing better than most". Um, no- the goal should always be to be doing the best and staying at the best you possibly can for <i>you</i>. If she was feeling okay, that would be one thing...but she's not.

Oh, the how much of a drop... I know my drs. don't mind a 2 or 3% drop nearly as much as I do. They look at it and say "Really close to baseline- that's good" whereas I look at it and say "3% consistant drop this year, times 3 years, at this rate, that would be almost a 10% drop in 3 years- what can we do to get it back up?" I want that 2 or 3 % back- today! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Asexyblond23]

I really appriate everyones thoughts about this. Its just sao hard when you feel that you are fighting but you dont want to seem like you are too puchy that you know it all about your health,more then the doctor. I am on IV's maybe once a year. I was on them in june of 06 for about a week and got a bad batch of tobra from the pharmacy, and had a little raction to it. It was even stated by the paharmisict that he had another cf person have the same raction from the same batch a week before, and a friend of mine who has cf was on the tobra same as me started one day beofre and had the same reaation as me. They were and still are very hesitant to believe us that it was a bad batch. I have been on tobra my whole life no probelm and even the pharmaist said it was a bad batch. So in nov they only put be on one IV and 2 orals even thou I told them that I wanted to be on tobra, she didnt want to put me on it again. I am seriuosly thinking about going back to the doctor that I had in louisville. See the lousiville CF clinic saw kids and adults, then all the sudden they stopped seeing adults so we either followed the doctor that saw us at the clinic to his new place, as a pulmonoligst not a CF doctor or go to vandy's CF adult clinic which is an hour away compared to louiville which is now 3 hours away. I kept with louiville for a year after I moved down here but it was hard being 3 hours away. But I think I feel like if I stay it would be convience over agressive care. I think I want to go back.

 

[Asexyblond23]

I really appriate everyones thoughts about this. Its just sao hard when you feel that you are fighting but you dont want to seem like you are too puchy that you know it all about your health,more then the doctor. I am on IV's maybe once a year. I was on them in june of 06 for about a week and got a bad batch of tobra from the pharmacy, and had a little raction to it. It was even stated by the paharmisict that he had another cf person have the same raction from the same batch a week before, and a friend of mine who has cf was on the tobra same as me started one day beofre and had the same reaation as me. They were and still are very hesitant to believe us that it was a bad batch. I have been on tobra my whole life no probelm and even the pharmaist said it was a bad batch. So in nov they only put be on one IV and 2 orals even thou I told them that I wanted to be on tobra, she didnt want to put me on it again. I am seriuosly thinking about going back to the doctor that I had in louisville. See the lousiville CF clinic saw kids and adults, then all the sudden they stopped seeing adults so we either followed the doctor that saw us at the clinic to his new place, as a pulmonoligst not a CF doctor or go to vandy's CF adult clinic which is an hour away compared to louiville which is now 3 hours away. I kept with louiville for a year after I moved down here but it was hard being 3 hours away. But I think I feel like if I stay it would be convience over agressive care. I think I want to go back.

 

[Asexyblond23]

I really appriate everyones thoughts about this. Its just sao hard when you feel that you are fighting but you dont want to seem like you are too puchy that you know it all about your health,more then the doctor. I am on IV's maybe once a year. I was on them in june of 06 for about a week and got a bad batch of tobra from the pharmacy, and had a little raction to it. It was even stated by the paharmisict that he had another cf person have the same raction from the same batch a week before, and a friend of mine who has cf was on the tobra same as me started one day beofre and had the same reaation as me. They were and still are very hesitant to believe us that it was a bad batch. I have been on tobra my whole life no probelm and even the pharmaist said it was a bad batch. So in nov they only put be on one IV and 2 orals even thou I told them that I wanted to be on tobra, she didnt want to put me on it again. I am seriuosly thinking about going back to the doctor that I had in louisville. See the lousiville CF clinic saw kids and adults, then all the sudden they stopped seeing adults so we either followed the doctor that saw us at the clinic to his new place, as a pulmonoligst not a CF doctor or go to vandy's CF adult clinic which is an hour away compared to louiville which is now 3 hours away. I kept with louiville for a year after I moved down here but it was hard being 3 hours away. But I think I feel like if I stay it would be convience over agressive care. I think I want to go back.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

yeah i take ya point but ya cant put of the inevitibale no matter how aggresive ya are with ya treatment ya lung function will go down</end quote></div>

i agree with this.

but it reminds me of Dr. Warwick's story.

In the 1960s, when he was in his late 20s, he started treating CF patients. They were dying before age 6. He tried everything he could to keep the patients alive longer. People kept telling him "just let them die. it's easier for everyone."

Here we are in 2007. Thank <b> God </b> he didn't just let them die. Because patients in his clinic are more often than not living until almost 50.

So while you're right, that it's inevitable that lung function will go down, I think we shouldn't accept it until we've tried everything. IV's, allergy testing & treatment, steroids, better Vest treatments, exercise, etc.

If all that has been tried, you are right. We have CF and lung function will decline. But if you have a doc that isn't throwing all he can at you to keep PFT's stable, then it's time to question and get aggressive.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

yeah i take ya point but ya cant put of the inevitibale no matter how aggresive ya are with ya treatment ya lung function will go down</end quote></div>

i agree with this.

but it reminds me of Dr. Warwick's story.

In the 1960s, when he was in his late 20s, he started treating CF patients. They were dying before age 6. He tried everything he could to keep the patients alive longer. People kept telling him "just let them die. it's easier for everyone."

Here we are in 2007. Thank <b> God </b> he didn't just let them die. Because patients in his clinic are more often than not living until almost 50.

So while you're right, that it's inevitable that lung function will go down, I think we shouldn't accept it until we've tried everything. IV's, allergy testing & treatment, steroids, better Vest treatments, exercise, etc.

If all that has been tried, you are right. We have CF and lung function will decline. But if you have a doc that isn't throwing all he can at you to keep PFT's stable, then it's time to question and get aggressive.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

yeah i take ya point but ya cant put of the inevitibale no matter how aggresive ya are with ya treatment ya lung function will go down</end quote></div>

i agree with this.

but it reminds me of Dr. Warwick's story.

In the 1960s, when he was in his late 20s, he started treating CF patients. They were dying before age 6. He tried everything he could to keep the patients alive longer. People kept telling him "just let them die. it's easier for everyone."

Here we are in 2007. Thank <b> God </b> he didn't just let them die. Because patients in his clinic are more often than not living until almost 50.

So while you're right, that it's inevitable that lung function will go down, I think we shouldn't accept it until we've tried everything. IV's, allergy testing & treatment, steroids, better Vest treatments, exercise, etc.

If all that has been tried, you are right. We have CF and lung function will decline. But if you have a doc that isn't throwing all he can at you to keep PFT's stable, then it's time to question and get aggressive.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Asexyblond23</b></i>

And like lyndsey said I am afraid of comming of pushy but i know my body............. I dont want to feel that I am fighting the doctor to help me get my numbers up and to put me on meds.</end quote></div>


At the end of the day, do you want to be healthy/stable and have come off pushy (God forbig you make someone upset) <b> OR </b>

Not come off pushy, have everyone like you, and have decreased FEV1's?


This is a no brainer. NO one has more interest in your health than you. Not your doc. Not your nurse. Not your dog/cat/whatever. It's up to you to do what it takes to keep your health.


<b> FIGHT ON </b>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Asexyblond23</b></i>

And like lyndsey said I am afraid of comming of pushy but i know my body............. I dont want to feel that I am fighting the doctor to help me get my numbers up and to put me on meds.</end quote></div>


At the end of the day, do you want to be healthy/stable and have come off pushy (God forbig you make someone upset) <b> OR </b>

Not come off pushy, have everyone like you, and have decreased FEV1's?


This is a no brainer. NO one has more interest in your health than you. Not your doc. Not your nurse. Not your dog/cat/whatever. It's up to you to do what it takes to keep your health.


<b> FIGHT ON </b>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Asexyblond23</b></i>

And like lyndsey said I am afraid of comming of pushy but i know my body............. I dont want to feel that I am fighting the doctor to help me get my numbers up and to put me on meds.</end quote></div>


At the end of the day, do you want to be healthy/stable and have come off pushy (God forbig you make someone upset) <b> OR </b>

Not come off pushy, have everyone like you, and have decreased FEV1's?


This is a no brainer. NO one has more interest in your health than you. Not your doc. Not your nurse. Not your dog/cat/whatever. It's up to you to do what it takes to keep your health.


<b> FIGHT ON </b>