docters and lack of understanding to your cf

[Ricky123]

iam at a good cf centre in london england via the brompton hospital,but i feel that some docters havent a real idea of how cf really affects you as a person,
let me elaborate about 5 years ago when my lung function was good something like fev1 85 the docters told me my cf was a mild case just cos my lung function numbers was high,yet i also knew they were only that high cos i had been so aggressive in my treatment ,something like 3 hours a day physio and nebs plus loads of exercise,and i also knew i produced a lot of phlegm around half a potful a day(of creon 10,000)
i knew that this docter was talking shite cos if i was a 9 out of 10 i wouldent produce hardly any phlegm plus my other docters at my previous hopsital when i was in child care said i was only average,

now my fev1 is 70 and they say now iam moderate to mild

my point is docters categorise you according to your lung function but this hides the truth somewhat,just cos i was in the 80s does not mean i was mild rather such aggresive care on my part which left me feeling tired etc on a daily basis to keep up such good lung function,

anyone else ever felt like this

just pisses me off a bit ,

 

[Ricky123]

iam at a good cf centre in london england via the brompton hospital,but i feel that some docters havent a real idea of how cf really affects you as a person,
let me elaborate about 5 years ago when my lung function was good something like fev1 85 the docters told me my cf was a mild case just cos my lung function numbers was high,yet i also knew they were only that high cos i had been so aggressive in my treatment ,something like 3 hours a day physio and nebs plus loads of exercise,and i also knew i produced a lot of phlegm around half a potful a day(of creon 10,000)
i knew that this docter was talking shite cos if i was a 9 out of 10 i wouldent produce hardly any phlegm plus my other docters at my previous hopsital when i was in child care said i was only average,

now my fev1 is 70 and they say now iam moderate to mild

my point is docters categorise you according to your lung function but this hides the truth somewhat,just cos i was in the 80s does not mean i was mild rather such aggresive care on my part which left me feeling tired etc on a daily basis to keep up such good lung function,

anyone else ever felt like this

just pisses me off a bit ,

 

[Ricky123]

iam at a good cf centre in london england via the brompton hospital,but i feel that some docters havent a real idea of how cf really affects you as a person,
let me elaborate about 5 years ago when my lung function was good something like fev1 85 the docters told me my cf was a mild case just cos my lung function numbers was high,yet i also knew they were only that high cos i had been so aggressive in my treatment ,something like 3 hours a day physio and nebs plus loads of exercise,and i also knew i produced a lot of phlegm around half a potful a day(of creon 10,000)
i knew that this docter was talking shite cos if i was a 9 out of 10 i wouldent produce hardly any phlegm plus my other docters at my previous hopsital when i was in child care said i was only average,

now my fev1 is 70 and they say now iam moderate to mild

my point is docters categorise you according to your lung function but this hides the truth somewhat,just cos i was in the 80s does not mean i was mild rather such aggresive care on my part which left me feeling tired etc on a daily basis to keep up such good lung function,

anyone else ever felt like this

just pisses me off a bit ,

 

[Ricky123]

iam at a good cf centre in london england via the brompton hospital,but i feel that some docters havent a real idea of how cf really affects you as a person,
let me elaborate about 5 years ago when my lung function was good something like fev1 85 the docters told me my cf was a mild case just cos my lung function numbers was high,yet i also knew they were only that high cos i had been so aggressive in my treatment ,something like 3 hours a day physio and nebs plus loads of exercise,and i also knew i produced a lot of phlegm around half a potful a day(of creon 10,000)
i knew that this docter was talking shite cos if i was a 9 out of 10 i wouldent produce hardly any phlegm plus my other docters at my previous hopsital when i was in child care said i was only average,

now my fev1 is 70 and they say now iam moderate to mild

my point is docters categorise you according to your lung function but this hides the truth somewhat,just cos i was in the 80s does not mean i was mild rather such aggresive care on my part which left me feeling tired etc on a daily basis to keep up such good lung function,

anyone else ever felt like this

just pisses me off a bit ,

 

[Ricky123]

iam at a good cf centre in london england via the brompton hospital,but i feel that some docters havent a real idea of how cf really affects you as a person,
let me elaborate about 5 years ago when my lung function was good something like fev1 85 the docters told me my cf was a mild case just cos my lung function numbers was high,yet i also knew they were only that high cos i had been so aggressive in my treatment ,something like 3 hours a day physio and nebs plus loads of exercise,and i also knew i produced a lot of phlegm around half a potful a day(of creon 10,000)
i knew that this docter was talking shite cos if i was a 9 out of 10 i wouldent produce hardly any phlegm plus my other docters at my previous hopsital when i was in child care said i was only average,

now my fev1 is 70 and they say now iam moderate to mild

my point is docters categorise you according to your lung function but this hides the truth somewhat,just cos i was in the 80s does not mean i was mild rather such aggresive care on my part which left me feeling tired etc on a daily basis to keep up such good lung function,

anyone else ever felt like this

just pisses me off a bit ,

 

[barbc888]

It's understandable that they'd categorize you by your PFT numbers; they have no idea how you feel or what you deal with unless they have the disease themselves. I really don't pay too much attention to the numbers they give me. I base it all on how I feel and what I'm doing to manage my CF. Getting caught up in their numbers game can drive you crazy and bum you out.

 

[barbc888]

It's understandable that they'd categorize you by your PFT numbers; they have no idea how you feel or what you deal with unless they have the disease themselves. I really don't pay too much attention to the numbers they give me. I base it all on how I feel and what I'm doing to manage my CF. Getting caught up in their numbers game can drive you crazy and bum you out.

 

[barbc888]

It's understandable that they'd categorize you by your PFT numbers; they have no idea how you feel or what you deal with unless they have the disease themselves. I really don't pay too much attention to the numbers they give me. I base it all on how I feel and what I'm doing to manage my CF. Getting caught up in their numbers game can drive you crazy and bum you out.

 

[barbc888]

It's understandable that they'd categorize you by your PFT numbers; they have no idea how you feel or what you deal with unless they have the disease themselves. I really don't pay too much attention to the numbers they give me. I base it all on how I feel and what I'm doing to manage my CF. Getting caught up in their numbers game can drive you crazy and bum you out.

 

[barbc888]

It's understandable that they'd categorize you by your PFT numbers; they have no idea how you feel or what you deal with unless they have the disease themselves. I really don't pay too much attention to the numbers they give me. I base it all on how I feel and what I'm doing to manage my CF. Getting caught up in their numbers game can drive you crazy and bum you out.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.

 

[kclynn87]

I completely understand what you mean. I spend sooo much of my doing just doing meds to live. It's not even like I'm really LIVING, I'm just....BREATHING. Anyway in order for me to have high numers I have to spend a lot of time doig all this. And sometimes even though I still do all of my treatments, I get sick a lot and so on. The docs really don't care too much about how it affects our personal lives. In order to be more compassionate caregivers, they should probably take the time sometime to really inquire about how it is for us besides from just a medical standpoint.