Drop in PFT's Does this sound werid?

[Jem]

You are the best judge of how you feel and if you are feeling tight in the chest, where you can't breathe in deep and do not feel right then you have every reason to expect that your doctor will take your complaints seriously and get to the bottom of why this is occurring. Just telling you to be grateful for having an FV1 of 82% ....well that is insulting. He should be judging your health individually not against some cf chart that he has conjured up.

Good for you <b>not</b> being satisfied with his response and for insisting that something be done here before it is too late to get back what you have lost in lung function. Certainly you do want to be aggressive so that function does not go down further.

As Danyell mentioned...how are your sputum cultures? And what type of bacteria are they cultured for? When was your last x-ray and better yet cat scan?

After your PFT on Monday, which I do hope shows improvement but if not, I hope that your doctor will have a sound plan of attack to do all that can be done, whether that includes further testing, changing or adding medications, or an admission for iv's. You are doing all that you can to be as healthy as you can be and you have every right to expect that he will do the same. If he does not then it might be time to look for another cf clinic or doctor within the one you go to now.

Please let us know how you make out. We are rooting for you!<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Asexyblond23]

Well I am glad to hear that someone else bedides just me thinks that this "you should be happy to be at 82%" is insane. I have been at this clinic for only 2 years and I jsut dont feel that they are very agressive. Well they are but I feel that it is always me pushing for meds. And like lyndsey said I am afraid of comming of pushy but i know my body. I have told them that I just want to get better and that I am willing to try anything you just tell me what to do. Thankfully one of them semed to listen and put me on the steriods and the tobi and cloistin when I wrote her. The problem is that I am always the one usually asking for meds. They look at my numbers and say they are good. But for me they are not. My usual is 87% not 82%, and for it to drop that in 7 months when it has been that for 10 years is pretty big, but they dont seem to think so. I just feel that I am way more agressive then them on my health. I dont want to feel that I am fighting the doctor to help me get my numbers up and to put me on meds. They do feel that there is nothing wrong with me like there is no problem. But a drop of 5% in 7 months there has to be something going on, it doesnt just happen oput of the blue. Then they said well we tried orals for 7 months and one iv med and its the same so I dont think there is a problem I think its just the diesase. HELLO I was on the same 2 orals the whole 7 months, never switched up. I am sorry I dont mean to vent. Nick is away with the army right now and all this jsut keeps comming to a head and I just feel like I am not being listened to and I fell depressed b/c I cant breathe in deep and I want to fix it.

 

[Asexyblond23]

Well I am glad to hear that someone else bedides just me thinks that this "you should be happy to be at 82%" is insane. I have been at this clinic for only 2 years and I jsut dont feel that they are very agressive. Well they are but I feel that it is always me pushing for meds. And like lyndsey said I am afraid of comming of pushy but i know my body. I have told them that I just want to get better and that I am willing to try anything you just tell me what to do. Thankfully one of them semed to listen and put me on the steriods and the tobi and cloistin when I wrote her. The problem is that I am always the one usually asking for meds. They look at my numbers and say they are good. But for me they are not. My usual is 87% not 82%, and for it to drop that in 7 months when it has been that for 10 years is pretty big, but they dont seem to think so. I just feel that I am way more agressive then them on my health. I dont want to feel that I am fighting the doctor to help me get my numbers up and to put me on meds. They do feel that there is nothing wrong with me like there is no problem. But a drop of 5% in 7 months there has to be something going on, it doesnt just happen oput of the blue. Then they said well we tried orals for 7 months and one iv med and its the same so I dont think there is a problem I think its just the diesase. HELLO I was on the same 2 orals the whole 7 months, never switched up. I am sorry I dont mean to vent. Nick is away with the army right now and all this jsut keeps comming to a head and I just feel like I am not being listened to and I fell depressed b/c I cant breathe in deep and I want to fix it.

 

[Asexyblond23]

Well I am glad to hear that someone else bedides just me thinks that this "you should be happy to be at 82%" is insane. I have been at this clinic for only 2 years and I jsut dont feel that they are very agressive. Well they are but I feel that it is always me pushing for meds. And like lyndsey said I am afraid of comming of pushy but i know my body. I have told them that I just want to get better and that I am willing to try anything you just tell me what to do. Thankfully one of them semed to listen and put me on the steriods and the tobi and cloistin when I wrote her. The problem is that I am always the one usually asking for meds. They look at my numbers and say they are good. But for me they are not. My usual is 87% not 82%, and for it to drop that in 7 months when it has been that for 10 years is pretty big, but they dont seem to think so. I just feel that I am way more agressive then them on my health. I dont want to feel that I am fighting the doctor to help me get my numbers up and to put me on meds. They do feel that there is nothing wrong with me like there is no problem. But a drop of 5% in 7 months there has to be something going on, it doesnt just happen oput of the blue. Then they said well we tried orals for 7 months and one iv med and its the same so I dont think there is a problem I think its just the diesase. HELLO I was on the same 2 orals the whole 7 months, never switched up. I am sorry I dont mean to vent. Nick is away with the army right now and all this jsut keeps comming to a head and I just feel like I am not being listened to and I fell depressed b/c I cant breathe in deep and I want to fix it.

 

[Diane]

I agree with you that it seems like they arent taking it too seriously. Yes 82% is a lung function i'd love to have, but if it isnt whats <b>normal for you</b> than his ( your doctors) point is mute on that comparison. We are all individuals in our cf, and should <b>not</b> be treated like we are on a conveyor belt going down the line being treated exactly like the previous patient with cf . I had a former Doctor who i really liked but his philosophy of " we'll cross that bridge when we get to it ", was something we never saw eye to eye on. I would always tell him," but i dont want to get to the bridge, i want to take a detour and avoid it if i can " . I hope you feel better soon, and i hope you can get your Doctor to listen to you more and not use comparisons.

 

[Diane]

I agree with you that it seems like they arent taking it too seriously. Yes 82% is a lung function i'd love to have, but if it isnt whats <b>normal for you</b> than his ( your doctors) point is mute on that comparison. We are all individuals in our cf, and should <b>not</b> be treated like we are on a conveyor belt going down the line being treated exactly like the previous patient with cf . I had a former Doctor who i really liked but his philosophy of " we'll cross that bridge when we get to it ", was something we never saw eye to eye on. I would always tell him," but i dont want to get to the bridge, i want to take a detour and avoid it if i can " . I hope you feel better soon, and i hope you can get your Doctor to listen to you more and not use comparisons.

 

[Diane]

I agree with you that it seems like they arent taking it too seriously. Yes 82% is a lung function i'd love to have, but if it isnt whats <b>normal for you</b> than his ( your doctors) point is mute on that comparison. We are all individuals in our cf, and should <b>not</b> be treated like we are on a conveyor belt going down the line being treated exactly like the previous patient with cf . I had a former Doctor who i really liked but his philosophy of " we'll cross that bridge when we get to it ", was something we never saw eye to eye on. I would always tell him," but i dont want to get to the bridge, i want to take a detour and avoid it if i can " . I hope you feel better soon, and i hope you can get your Doctor to listen to you more and not use comparisons.

 

[catboogie]

alisha,

your story is so strange to me, that your doctors are not willing to do more for you. for me, my doctors are often suggesting things i could do to be more aggressive. i guess i just assumed that all doctors are like that. that being said, i think you are right to stay on their tails. if you think you need IVs, then you probably do (that is my experience anyway.) i wonder why it is that they don't agree with you? also, do you feel well enough to exercise? sometimes after a round of treatment, my numbers won't go up until i'm able to get back into my exercise routine.

good luck. i'm proud of you for trying to do what's best for yourself!

 

[catboogie]

alisha,

your story is so strange to me, that your doctors are not willing to do more for you. for me, my doctors are often suggesting things i could do to be more aggressive. i guess i just assumed that all doctors are like that. that being said, i think you are right to stay on their tails. if you think you need IVs, then you probably do (that is my experience anyway.) i wonder why it is that they don't agree with you? also, do you feel well enough to exercise? sometimes after a round of treatment, my numbers won't go up until i'm able to get back into my exercise routine.

good luck. i'm proud of you for trying to do what's best for yourself!

 

[catboogie]

alisha,

your story is so strange to me, that your doctors are not willing to do more for you. for me, my doctors are often suggesting things i could do to be more aggressive. i guess i just assumed that all doctors are like that. that being said, i think you are right to stay on their tails. if you think you need IVs, then you probably do (that is my experience anyway.) i wonder why it is that they don't agree with you? also, do you feel well enough to exercise? sometimes after a round of treatment, my numbers won't go up until i'm able to get back into my exercise routine.

good luck. i'm proud of you for trying to do what's best for yourself!

 

[Ricky123]

i understand what ya saying but i was a bit like you 4 or so years ago but i realised that sometimes you cant be too hard on yaself. Ya lung function will go down no matter how hard or aggressive the treatment is or you are i think the quality of life is more important and if ya go down like i have (i dropped 10% in a year) i just accept it i have done everything i can but i am not going to worry about it cos life is to short what will will be

 

[Ricky123]

i understand what ya saying but i was a bit like you 4 or so years ago but i realised that sometimes you cant be too hard on yaself. Ya lung function will go down no matter how hard or aggressive the treatment is or you are i think the quality of life is more important and if ya go down like i have (i dropped 10% in a year) i just accept it i have done everything i can but i am not going to worry about it cos life is to short what will will be

 

[Ricky123]

i understand what ya saying but i was a bit like you 4 or so years ago but i realised that sometimes you cant be too hard on yaself. Ya lung function will go down no matter how hard or aggressive the treatment is or you are i think the quality of life is more important and if ya go down like i have (i dropped 10% in a year) i just accept it i have done everything i can but i am not going to worry about it cos life is to short what will will be

 

[JazzysMom]

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

i understand what ya saying but i was a bit like you 4 or so years ago but i realised that sometimes you cant be too hard on yaself. Ya lung function will go down no matter how hard or aggressive the treatment is or you are i think the quality of life is more important and if ya go down like i have (i dropped 10% in a year) i just accept it i have done everything i can but i am not going to worry about it cos life is to short what will will be</end quote></div>

She isnt being hard on herself. She is ?? why the doctors are so lax & arent more aggressive & pushing her to be more aggressive in at least trying. Its the lax attitude that allows the damage to occur & pfts to stay lower more frequently then at least trying & finding out it just wont work.

 

[JazzysMom]

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

i understand what ya saying but i was a bit like you 4 or so years ago but i realised that sometimes you cant be too hard on yaself. Ya lung function will go down no matter how hard or aggressive the treatment is or you are i think the quality of life is more important and if ya go down like i have (i dropped 10% in a year) i just accept it i have done everything i can but i am not going to worry about it cos life is to short what will will be</end quote></div>

She isnt being hard on herself. She is ?? why the doctors are so lax & arent more aggressive & pushing her to be more aggressive in at least trying. Its the lax attitude that allows the damage to occur & pfts to stay lower more frequently then at least trying & finding out it just wont work.

 

[JazzysMom]

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

i understand what ya saying but i was a bit like you 4 or so years ago but i realised that sometimes you cant be too hard on yaself. Ya lung function will go down no matter how hard or aggressive the treatment is or you are i think the quality of life is more important and if ya go down like i have (i dropped 10% in a year) i just accept it i have done everything i can but i am not going to worry about it cos life is to short what will will be</end quote></div>

She isnt being hard on herself. She is ?? why the doctors are so lax & arent more aggressive & pushing her to be more aggressive in at least trying. Its the lax attitude that allows the damage to occur & pfts to stay lower more frequently then at least trying & finding out it just wont work.

 

[Ricky123]

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

 

[Ricky123]

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

 

[Ricky123]

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

 

[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.