unhappy with CF team

B

beccab

New member
no they do not check sensitivites each time (this is mostly my fault) I have a hard time giving sputum....(it has gotten stuck it my airway and i can't breathe... so now i panic and swallow it before it gets to my mouth...)


Thank you jazzysmom
I had not heard that with the canadian healthcare...I know i am able to get the dual citizienship...and friends of ours live in canada just to get the healthcare (they are still americans though and he has MS i think and his meds/treatments are over 1000 a month here and it is covered 100% there) so it is something i guess i really need to look into..i didn't realize they denied people (if they legit. could get the citizienship).

IF anyone has ANY info on the canadian healthcare system and CF please message me..... I know my aunt had to wait a year to get a bed for a hip replacement...how does that work with us a needing IV's or a tune up?

thank you guys so much!!
 
B

beccab

New member
no they do not check sensitivites each time (this is mostly my fault) I have a hard time giving sputum....(it has gotten stuck it my airway and i can't breathe... so now i panic and swallow it before it gets to my mouth...)


Thank you jazzysmom
I had not heard that with the canadian healthcare...I know i am able to get the dual citizienship...and friends of ours live in canada just to get the healthcare (they are still americans though and he has MS i think and his meds/treatments are over 1000 a month here and it is covered 100% there) so it is something i guess i really need to look into..i didn't realize they denied people (if they legit. could get the citizienship).

IF anyone has ANY info on the canadian healthcare system and CF please message me..... I know my aunt had to wait a year to get a bed for a hip replacement...how does that work with us a needing IV's or a tune up?

thank you guys so much!!
 
B

beccab

New member
no they do not check sensitivites each time (this is mostly my fault) I have a hard time giving sputum....(it has gotten stuck it my airway and i can't breathe... so now i panic and swallow it before it gets to my mouth...)


Thank you jazzysmom
I had not heard that with the canadian healthcare...I know i am able to get the dual citizienship...and friends of ours live in canada just to get the healthcare (they are still americans though and he has MS i think and his meds/treatments are over 1000 a month here and it is covered 100% there) so it is something i guess i really need to look into..i didn't realize they denied people (if they legit. could get the citizienship).

IF anyone has ANY info on the canadian healthcare system and CF please message me..... I know my aunt had to wait a year to get a bed for a hip replacement...how does that work with us a needing IV's or a tune up?

thank you guys so much!!
 
B

beccab

New member
no they do not check sensitivites each time (this is mostly my fault) I have a hard time giving sputum....(it has gotten stuck it my airway and i can't breathe... so now i panic and swallow it before it gets to my mouth...)


Thank you jazzysmom
I had not heard that with the canadian healthcare...I know i am able to get the dual citizienship...and friends of ours live in canada just to get the healthcare (they are still americans though and he has MS i think and his meds/treatments are over 1000 a month here and it is covered 100% there) so it is something i guess i really need to look into..i didn't realize they denied people (if they legit. could get the citizienship).

IF anyone has ANY info on the canadian healthcare system and CF please message me..... I know my aunt had to wait a year to get a bed for a hip replacement...how does that work with us a needing IV's or a tune up?

thank you guys so much!!
 
B

beccab

New member
no they do not check sensitivites each time (this is mostly my fault) I have a hard time giving sputum....(it has gotten stuck it my airway and i can't breathe... so now i panic and swallow it before it gets to my mouth...)
<br />
<br />
<br />Thank you jazzysmom
<br />I had not heard that with the canadian healthcare...I know i am able to get the dual citizienship...and friends of ours live in canada just to get the healthcare (they are still americans though and he has MS i think and his meds/treatments are over 1000 a month here and it is covered 100% there) so it is something i guess i really need to look into..i didn't realize they denied people (if they legit. could get the citizienship).
<br />
<br />IF anyone has ANY info on the canadian healthcare system and CF please message me..... I know my aunt had to wait a year to get a bed for a hip replacement...how does that work with us a needing IV's or a tune up?
<br />
<br />thank you guys so much!!
 
S

Stillgoing

New member
I don't like hearing CF patients compared to each other. Each person should be compared to (him or) herself.

My daughter was going to a clinic where she was one of the healthier patients. They were satisfied with FEV1s in the 80s. This did not feel right to me so I switched her to a different clinic about a year ago. Yesterday her FEV1 was 123% - down from 133% just four months ago. At our new clinic they said they weren't pleased with this trend. No special action is being taken, but we are all (clinic and family) on alert that we need to reverse the trend. We will go back in 2 months to see if we have been successful. If not, then . . . Quite a change from the previous clinic!!

Why the difference in attitude and treatment protocol? I don't know. I just know that when you have a funny feeling that you aren't getting the best treatment possible you are right. Now it is up to you to do something about it. If you can't get to a clinic in another state or in Canada soon, is there a general pulmonologist in the area who would treat you more aggressively? Or could you go to a distant, more aggressive clinic in another state for a consult and bring that info back to your current clinic? It might make them mad, but they aren't taking care of you very well anyway.

Good luck.

Mom to 8 yo girl w/CF - dx at age 6
 
S

Stillgoing

New member
I don't like hearing CF patients compared to each other. Each person should be compared to (him or) herself.

My daughter was going to a clinic where she was one of the healthier patients. They were satisfied with FEV1s in the 80s. This did not feel right to me so I switched her to a different clinic about a year ago. Yesterday her FEV1 was 123% - down from 133% just four months ago. At our new clinic they said they weren't pleased with this trend. No special action is being taken, but we are all (clinic and family) on alert that we need to reverse the trend. We will go back in 2 months to see if we have been successful. If not, then . . . Quite a change from the previous clinic!!

Why the difference in attitude and treatment protocol? I don't know. I just know that when you have a funny feeling that you aren't getting the best treatment possible you are right. Now it is up to you to do something about it. If you can't get to a clinic in another state or in Canada soon, is there a general pulmonologist in the area who would treat you more aggressively? Or could you go to a distant, more aggressive clinic in another state for a consult and bring that info back to your current clinic? It might make them mad, but they aren't taking care of you very well anyway.

Good luck.

Mom to 8 yo girl w/CF - dx at age 6
 
S

Stillgoing

New member
I don't like hearing CF patients compared to each other. Each person should be compared to (him or) herself.

My daughter was going to a clinic where she was one of the healthier patients. They were satisfied with FEV1s in the 80s. This did not feel right to me so I switched her to a different clinic about a year ago. Yesterday her FEV1 was 123% - down from 133% just four months ago. At our new clinic they said they weren't pleased with this trend. No special action is being taken, but we are all (clinic and family) on alert that we need to reverse the trend. We will go back in 2 months to see if we have been successful. If not, then . . . Quite a change from the previous clinic!!

Why the difference in attitude and treatment protocol? I don't know. I just know that when you have a funny feeling that you aren't getting the best treatment possible you are right. Now it is up to you to do something about it. If you can't get to a clinic in another state or in Canada soon, is there a general pulmonologist in the area who would treat you more aggressively? Or could you go to a distant, more aggressive clinic in another state for a consult and bring that info back to your current clinic? It might make them mad, but they aren't taking care of you very well anyway.

Good luck.

Mom to 8 yo girl w/CF - dx at age 6
 
S

Stillgoing

New member
I don't like hearing CF patients compared to each other. Each person should be compared to (him or) herself.

My daughter was going to a clinic where she was one of the healthier patients. They were satisfied with FEV1s in the 80s. This did not feel right to me so I switched her to a different clinic about a year ago. Yesterday her FEV1 was 123% - down from 133% just four months ago. At our new clinic they said they weren't pleased with this trend. No special action is being taken, but we are all (clinic and family) on alert that we need to reverse the trend. We will go back in 2 months to see if we have been successful. If not, then . . . Quite a change from the previous clinic!!

Why the difference in attitude and treatment protocol? I don't know. I just know that when you have a funny feeling that you aren't getting the best treatment possible you are right. Now it is up to you to do something about it. If you can't get to a clinic in another state or in Canada soon, is there a general pulmonologist in the area who would treat you more aggressively? Or could you go to a distant, more aggressive clinic in another state for a consult and bring that info back to your current clinic? It might make them mad, but they aren't taking care of you very well anyway.

Good luck.

Mom to 8 yo girl w/CF - dx at age 6
 
S

Stillgoing

New member
I don't like hearing CF patients compared to each other. Each person should be compared to (him or) herself.
<br />
<br />My daughter was going to a clinic where she was one of the healthier patients. They were satisfied with FEV1s in the 80s. This did not feel right to me so I switched her to a different clinic about a year ago. Yesterday her FEV1 was 123% - down from 133% just four months ago. At our new clinic they said they weren't pleased with this trend. No special action is being taken, but we are all (clinic and family) on alert that we need to reverse the trend. We will go back in 2 months to see if we have been successful. If not, then . . . Quite a change from the previous clinic!!
<br />
<br />Why the difference in attitude and treatment protocol? I don't know. I just know that when you have a funny feeling that you aren't getting the best treatment possible you are right. Now it is up to you to do something about it. If you can't get to a clinic in another state or in Canada soon, is there a general pulmonologist in the area who would treat you more aggressively? Or could you go to a distant, more aggressive clinic in another state for a consult and bring that info back to your current clinic? It might make them mad, but they aren't taking care of you very well anyway.
<br />
<br />Good luck.
<br />
<br />Mom to 8 yo girl w/CF - dx at age 6
 
B

beleache

New member
Becca,

I know we talked about this in chat last night, but i just wanted to tell you i feel for the frustration you are feeling.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I cant believe that your center is so uncaring.. I hope you find a better place for your healthcare.. You deserve it !!! We all deserve the best, no matter what our heath statis is.

Take care & keep us posted <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Becca,

I know we talked about this in chat last night, but i just wanted to tell you i feel for the frustration you are feeling.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I cant believe that your center is so uncaring.. I hope you find a better place for your healthcare.. You deserve it !!! We all deserve the best, no matter what our heath statis is.

Take care & keep us posted <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Becca,

I know we talked about this in chat last night, but i just wanted to tell you i feel for the frustration you are feeling.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I cant believe that your center is so uncaring.. I hope you find a better place for your healthcare.. You deserve it !!! We all deserve the best, no matter what our heath statis is.

Take care & keep us posted <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Becca,

I know we talked about this in chat last night, but i just wanted to tell you i feel for the frustration you are feeling.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I cant believe that your center is so uncaring.. I hope you find a better place for your healthcare.. You deserve it !!! We all deserve the best, no matter what our heath statis is.

Take care & keep us posted <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Becca,
<br />
<br />I know we talked about this in chat last night, but i just wanted to tell you i feel for the frustration you are feeling.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
<br />
<br /> I cant believe that your center is so uncaring.. I hope you find a better place for your healthcare.. You deserve it !!! We all deserve the best, no matter what our heath statis is.
<br />
<br />Take care & keep us posted <img src="i/expressions/heart.gif" border="0"> joni
 
C

cfsucks

Guest
could it be something other than maybe the 7% drop that is causing such exhaustion? my lung function is around 50 percent the last time i went in, and i can do pretty much anything that the average person can do.

my doctors also don't like giving iv's, and that is an issue i have with them. i'm looking to switch clinics because this one feels too conservative. they think that a drop of 10% is a candidate for oral antibiotics.

i wonder if we're at the same clinic ahahha.
 
C

cfsucks

Guest
could it be something other than maybe the 7% drop that is causing such exhaustion? my lung function is around 50 percent the last time i went in, and i can do pretty much anything that the average person can do.

my doctors also don't like giving iv's, and that is an issue i have with them. i'm looking to switch clinics because this one feels too conservative. they think that a drop of 10% is a candidate for oral antibiotics.

i wonder if we're at the same clinic ahahha.
 
C

cfsucks

Guest
could it be something other than maybe the 7% drop that is causing such exhaustion? my lung function is around 50 percent the last time i went in, and i can do pretty much anything that the average person can do.

my doctors also don't like giving iv's, and that is an issue i have with them. i'm looking to switch clinics because this one feels too conservative. they think that a drop of 10% is a candidate for oral antibiotics.

i wonder if we're at the same clinic ahahha.
 
C

cfsucks

Guest
could it be something other than maybe the 7% drop that is causing such exhaustion? my lung function is around 50 percent the last time i went in, and i can do pretty much anything that the average person can do.

my doctors also don't like giving iv's, and that is an issue i have with them. i'm looking to switch clinics because this one feels too conservative. they think that a drop of 10% is a candidate for oral antibiotics.

i wonder if we're at the same clinic ahahha.
 
C

cfsucks

Guest
could it be something other than maybe the 7% drop that is causing such exhaustion? my lung function is around 50 percent the last time i went in, and i can do pretty much anything that the average person can do.
<br />
<br />my doctors also don't like giving iv's, and that is an issue i have with them. i'm looking to switch clinics because this one feels too conservative. they think that a drop of 10% is a candidate for oral antibiotics.
<br />
<br />i wonder if we're at the same clinic ahahha.
 
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