unhappy with CF team

beccab · Apr 22, 2009

Ok so i am usually pretty healthy for a CFer and my pfts are usually really high but lately i have been sick almost more than i have been well (off and on since nov) I have been on oral abx for at least 8 of the last 18 weeks and sick at least 10 of those.

in dec i asked for IV's (would be my first IV's) my clinics responce was "we don't want to go down that road with you"

now i am sick again and the nurse felt IV's would be a good thing...we agreed that I would come in and do PFT's and if they were below baseline I would be doing IV's

Well my pft's dropped 7 points (ok seriouly from 100- 93) but i can't catch my breath and walking to the bathroom exhausts me (seriously)

they decided since it was such a drop that i would need to see the cf doc and all he had to say was "well your better than 95% of the cf patients we see" and RXed more oral abx

I am just so sick of that being there responce why do i even bother going if i am better than 95% of the other patients...I swear i am so sick of this clinic... i really don't have any other options for clinics in my state.

one option is for me to get my canadian citizienship. (which i can get) and go up to canada for healthcare..
is there any one in BC (the vancouver area??) that could give me any info or suggestions
thanks

beccab · Apr 22, 2009

Ok so i am usually pretty healthy for a CFer and my pfts are usually really high but lately i have been sick almost more than i have been well (off and on since nov) I have been on oral abx for at least 8 of the last 18 weeks and sick at least 10 of those.

in dec i asked for IV's (would be my first IV's) my clinics responce was "we don't want to go down that road with you"

now i am sick again and the nurse felt IV's would be a good thing...we agreed that I would come in and do PFT's and if they were below baseline I would be doing IV's

Well my pft's dropped 7 points (ok seriouly from 100- 93) but i can't catch my breath and walking to the bathroom exhausts me (seriously)

they decided since it was such a drop that i would need to see the cf doc and all he had to say was "well your better than 95% of the cf patients we see" and RXed more oral abx

I am just so sick of that being there responce why do i even bother going if i am better than 95% of the other patients...I swear i am so sick of this clinic... i really don't have any other options for clinics in my state.

one option is for me to get my canadian citizienship. (which i can get) and go up to canada for healthcare..
is there any one in BC (the vancouver area??) that could give me any info or suggestions
thanks

beccab · Apr 22, 2009

Ok so i am usually pretty healthy for a CFer and my pfts are usually really high but lately i have been sick almost more than i have been well (off and on since nov) I have been on oral abx for at least 8 of the last 18 weeks and sick at least 10 of those.

in dec i asked for IV's (would be my first IV's) my clinics responce was "we don't want to go down that road with you"

now i am sick again and the nurse felt IV's would be a good thing...we agreed that I would come in and do PFT's and if they were below baseline I would be doing IV's

Well my pft's dropped 7 points (ok seriouly from 100- 93) but i can't catch my breath and walking to the bathroom exhausts me (seriously)

they decided since it was such a drop that i would need to see the cf doc and all he had to say was "well your better than 95% of the cf patients we see" and RXed more oral abx

I am just so sick of that being there responce why do i even bother going if i am better than 95% of the other patients...I swear i am so sick of this clinic... i really don't have any other options for clinics in my state.

one option is for me to get my canadian citizienship. (which i can get) and go up to canada for healthcare..
is there any one in BC (the vancouver area??) that could give me any info or suggestions
thanks

beccab · Apr 22, 2009

Ok so i am usually pretty healthy for a CFer and my pfts are usually really high but lately i have been sick almost more than i have been well (off and on since nov) I have been on oral abx for at least 8 of the last 18 weeks and sick at least 10 of those.

in dec i asked for IV's (would be my first IV's) my clinics responce was "we don't want to go down that road with you"

now i am sick again and the nurse felt IV's would be a good thing...we agreed that I would come in and do PFT's and if they were below baseline I would be doing IV's

Well my pft's dropped 7 points (ok seriouly from 100- 93) but i can't catch my breath and walking to the bathroom exhausts me (seriously)

they decided since it was such a drop that i would need to see the cf doc and all he had to say was "well your better than 95% of the cf patients we see" and RXed more oral abx

I am just so sick of that being there responce why do i even bother going if i am better than 95% of the other patients...I swear i am so sick of this clinic... i really don't have any other options for clinics in my state.

one option is for me to get my canadian citizienship. (which i can get) and go up to canada for healthcare..
is there any one in BC (the vancouver area??) that could give me any info or suggestions
thanks

beccab · Apr 22, 2009

Ok so i am usually pretty healthy for a CFer and my pfts are usually really high but lately i have been sick almost more than i have been well (off and on since nov) I have been on oral abx for at least 8 of the last 18 weeks and sick at least 10 of those.
 
 in dec i asked for IV's (would be my first IV's) my clinics responce was "we don't want to go down that road with you"
 
 now i am sick again and the nurse felt IV's would be a good thing...we agreed that I would come in and do PFT's and if they were below baseline I would be doing IV's
 
 Well my pft's dropped 7 points (ok seriouly from 100- 93) but i can't catch my breath and walking to the bathroom exhausts me (seriously)
 
 they decided since it was such a drop that i would need to see the cf doc and all he had to say was "well your better than 95% of the cf patients we see" and RXed more oral abx
 
 I am just so sick of that being there responce why do i even bother going if i am better than 95% of the other patients...I swear i am so sick of this clinic... i really don't have any other options for clinics in my state.
 
 one option is for me to get my canadian citizienship. (which i can get) and go up to canada for healthcare..
 is there any one in BC (the vancouver area??) that could give me any info or suggestions
 thanks

JenDiS · Apr 22, 2009

thats just ridiculous. if you have a doctor or team does not listen to you at all then you need to find a new team somewhere else.

if your baseline is 100 and ur pfts dropped by that much then u most likely do need ivs. if YOU feel that YOU need them then they should listen to you and work something out because orals dont do ***** and they obviously havent since youve been on them!

and another thing is he is comparing you to other CF patients and thats a BIG NO NO. you are going to one way or another need your first round of IV's at somepoint in your life (hopefully later than soon) so him trying to avoid it ,which it sounds like he is, isnt going to be helping at all. thats just crazy.

my suggestion is to get the hell out of that cf team and go where ever else you can.

I get the same symptoms as you when I start getting an infection. I cant even walk 2 feet from my room to the bathroom without getting in a coughing fit and then throwing up.

it frustrates me so much that doctors just because they are doctors know what is best for you as if they are living in your body. i really hope you get the care you need without needing to be half out on a gurny rushed into the ER cuz you cant breathe.

stupid doctors...

JenDiS · Apr 22, 2009

thats just ridiculous. if you have a doctor or team does not listen to you at all then you need to find a new team somewhere else.

if your baseline is 100 and ur pfts dropped by that much then u most likely do need ivs. if YOU feel that YOU need them then they should listen to you and work something out because orals dont do ***** and they obviously havent since youve been on them!

and another thing is he is comparing you to other CF patients and thats a BIG NO NO. you are going to one way or another need your first round of IV's at somepoint in your life (hopefully later than soon) so him trying to avoid it ,which it sounds like he is, isnt going to be helping at all. thats just crazy.

my suggestion is to get the hell out of that cf team and go where ever else you can.

I get the same symptoms as you when I start getting an infection. I cant even walk 2 feet from my room to the bathroom without getting in a coughing fit and then throwing up.

it frustrates me so much that doctors just because they are doctors know what is best for you as if they are living in your body. i really hope you get the care you need without needing to be half out on a gurny rushed into the ER cuz you cant breathe.

stupid doctors...

JenDiS · Apr 22, 2009

thats just ridiculous. if you have a doctor or team does not listen to you at all then you need to find a new team somewhere else.

if your baseline is 100 and ur pfts dropped by that much then u most likely do need ivs. if YOU feel that YOU need them then they should listen to you and work something out because orals dont do ***** and they obviously havent since youve been on them!

and another thing is he is comparing you to other CF patients and thats a BIG NO NO. you are going to one way or another need your first round of IV's at somepoint in your life (hopefully later than soon) so him trying to avoid it ,which it sounds like he is, isnt going to be helping at all. thats just crazy.

my suggestion is to get the hell out of that cf team and go where ever else you can.

I get the same symptoms as you when I start getting an infection. I cant even walk 2 feet from my room to the bathroom without getting in a coughing fit and then throwing up.

it frustrates me so much that doctors just because they are doctors know what is best for you as if they are living in your body. i really hope you get the care you need without needing to be half out on a gurny rushed into the ER cuz you cant breathe.

stupid doctors...

JenDiS · Apr 22, 2009

thats just ridiculous. if you have a doctor or team does not listen to you at all then you need to find a new team somewhere else.

if your baseline is 100 and ur pfts dropped by that much then u most likely do need ivs. if YOU feel that YOU need them then they should listen to you and work something out because orals dont do ***** and they obviously havent since youve been on them!

and another thing is he is comparing you to other CF patients and thats a BIG NO NO. you are going to one way or another need your first round of IV's at somepoint in your life (hopefully later than soon) so him trying to avoid it ,which it sounds like he is, isnt going to be helping at all. thats just crazy.

my suggestion is to get the hell out of that cf team and go where ever else you can.

I get the same symptoms as you when I start getting an infection. I cant even walk 2 feet from my room to the bathroom without getting in a coughing fit and then throwing up.

it frustrates me so much that doctors just because they are doctors know what is best for you as if they are living in your body. i really hope you get the care you need without needing to be half out on a gurny rushed into the ER cuz you cant breathe.

stupid doctors...

JenDiS · Apr 22, 2009

thats just ridiculous. if you have a doctor or team does not listen to you at all then you need to find a new team somewhere else.
 
 if your baseline is 100 and ur pfts dropped by that much then u most likely do need ivs. if YOU feel that YOU need them then they should listen to you and work something out because orals dont do ***** and they obviously havent since youve been on them!
 
 and another thing is he is comparing you to other CF patients and thats a BIG NO NO. you are going to one way or another need your first round of IV's at somepoint in your life (hopefully later than soon) so him trying to avoid it ,which it sounds like he is, isnt going to be helping at all. thats just crazy.
 
 my suggestion is to get the hell out of that cf team and go where ever else you can.
 
 I get the same symptoms as you when I start getting an infection. I cant even walk 2 feet from my room to the bathroom without getting in a coughing fit and then throwing up.
 
 it frustrates me so much that doctors just because they are doctors know what is best for you as if they are living in your body. i really hope you get the care you need without needing to be half out on a gurny rushed into the ER cuz you cant breathe.
 
 stupid doctors...

JazzysMom · Apr 22, 2009

One thing that I wish you could stress with this CF Team before you leave should you actually do so is....

JUST because you are better then other CFers does not make your drop acceptable. If you continue to drop at this rate on a regular basis you will BE one of those other CFers.

You should tell them you dont "care" about the other CFers, you care about YOU~

That is total BS.....as to the Canada thing. I mentioned this in chat, but not sure if you saw it or not. I know with some countries that a CFer can not become a citizen & get healthcare.

I cant recall which countries specifically, but I remember this being addressed before. I guess we are just too costly for their healthcare systems!

JazzysMom · Apr 22, 2009

One thing that I wish you could stress with this CF Team before you leave should you actually do so is....

JUST because you are better then other CFers does not make your drop acceptable. If you continue to drop at this rate on a regular basis you will BE one of those other CFers.

You should tell them you dont "care" about the other CFers, you care about YOU~

That is total BS.....as to the Canada thing. I mentioned this in chat, but not sure if you saw it or not. I know with some countries that a CFer can not become a citizen & get healthcare.

I cant recall which countries specifically, but I remember this being addressed before. I guess we are just too costly for their healthcare systems!

JazzysMom · Apr 22, 2009

One thing that I wish you could stress with this CF Team before you leave should you actually do so is....

JUST because you are better then other CFers does not make your drop acceptable. If you continue to drop at this rate on a regular basis you will BE one of those other CFers.

You should tell them you dont "care" about the other CFers, you care about YOU~

That is total BS.....as to the Canada thing. I mentioned this in chat, but not sure if you saw it or not. I know with some countries that a CFer can not become a citizen & get healthcare.

I cant recall which countries specifically, but I remember this being addressed before. I guess we are just too costly for their healthcare systems!

JazzysMom · Apr 22, 2009

One thing that I wish you could stress with this CF Team before you leave should you actually do so is....

JUST because you are better then other CFers does not make your drop acceptable. If you continue to drop at this rate on a regular basis you will BE one of those other CFers.

You should tell them you dont "care" about the other CFers, you care about YOU~

That is total BS.....as to the Canada thing. I mentioned this in chat, but not sure if you saw it or not. I know with some countries that a CFer can not become a citizen & get healthcare.

I cant recall which countries specifically, but I remember this being addressed before. I guess we are just too costly for their healthcare systems!

JazzysMom · Apr 22, 2009

One thing that I wish you could stress with this CF Team before you leave should you actually do so is....
 
 JUST because you are better then other CFers does not make your drop acceptable. If you continue to drop at this rate on a regular basis you will BE one of those other CFers.
 
 You should tell them you dont "care" about the other CFers, you care about YOU~
 
 That is total BS.....as to the Canada thing. I mentioned this in chat, but not sure if you saw it or not. I know with some countries that a CFer can not become a citizen & get healthcare.
 
 I cant recall which countries specifically, but I remember this being addressed before. I guess we are just too costly for their healthcare systems!

Jeana · Apr 22, 2009