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How do you Explain CF in the simplest form?

6

65rosessamurai

Guest
Just in the past month I had seen two docs and had gotten the realization that the wife still doesn't understand CF, either.

Before I go on to taking the time to make an outline and presenting it to the CF community, I wanted to ask if anyone has already come up with some sort of "outline" or "presentation" of what CF is.

It seems that I need to add what sort of organs are affected by CF and HOW they are affected. I don't know how the liver is affected, so I have to do research on that.

I do know the basics of what CFRD is, though treatment is probably newer in Japan than say, in the States. I also feel I'd have to put what knowledge is available on the net to get a good enough idea as to how to deal with it. I'm still hoping I haven't become diabetic, but since it is a probability, then whatever I know will be helpful to what the docs need to know (though I wish they knew more of this than I did!).

I can get into the basics with the lungs and pancreatic deficiency with just personal experience and knowledge, but I couldn't say whether kidneys are involved or not, mostly since I haven't had any kidney issues. I know the heart will be affected based on how the lungs supply oxygen, but since I don't have heart issues I don't think I have to go much farther than that in the outline.

I suppose if I got far enough into the basics of how the genetics of cf affects a certain blah-blah-blah that, in turn affects the mucous production, it may erase their thought that CF wasn't caught by someone on the train or sometime during my childhood or other strange hypothesis that unexperienced doctors come up with everytime they meet their first CF patient.

I was hoping for some ideas/added input frim this site to this question so that I can come up with an effective way to explain CF without getting short-winded (we know how fast that will happen), or without getting upset because I feel that I keep repeating myself too much.

I hoped that after everyone's input, I could get an outline made up, and I'd be willing to share it. Right now I'm not sure where to start, really.
 
6

65rosessamurai

Guest
Just in the past month I had seen two docs and had gotten the realization that the wife still doesn't understand CF, either.

Before I go on to taking the time to make an outline and presenting it to the CF community, I wanted to ask if anyone has already come up with some sort of "outline" or "presentation" of what CF is.

It seems that I need to add what sort of organs are affected by CF and HOW they are affected. I don't know how the liver is affected, so I have to do research on that.

I do know the basics of what CFRD is, though treatment is probably newer in Japan than say, in the States. I also feel I'd have to put what knowledge is available on the net to get a good enough idea as to how to deal with it. I'm still hoping I haven't become diabetic, but since it is a probability, then whatever I know will be helpful to what the docs need to know (though I wish they knew more of this than I did!).

I can get into the basics with the lungs and pancreatic deficiency with just personal experience and knowledge, but I couldn't say whether kidneys are involved or not, mostly since I haven't had any kidney issues. I know the heart will be affected based on how the lungs supply oxygen, but since I don't have heart issues I don't think I have to go much farther than that in the outline.

I suppose if I got far enough into the basics of how the genetics of cf affects a certain blah-blah-blah that, in turn affects the mucous production, it may erase their thought that CF wasn't caught by someone on the train or sometime during my childhood or other strange hypothesis that unexperienced doctors come up with everytime they meet their first CF patient.

I was hoping for some ideas/added input frim this site to this question so that I can come up with an effective way to explain CF without getting short-winded (we know how fast that will happen), or without getting upset because I feel that I keep repeating myself too much.

I hoped that after everyone's input, I could get an outline made up, and I'd be willing to share it. Right now I'm not sure where to start, really.
 
6

65rosessamurai

Guest
Just in the past month I had seen two docs and had gotten the realization that the wife still doesn't understand CF, either.

Before I go on to taking the time to make an outline and presenting it to the CF community, I wanted to ask if anyone has already come up with some sort of "outline" or "presentation" of what CF is.

It seems that I need to add what sort of organs are affected by CF and HOW they are affected. I don't know how the liver is affected, so I have to do research on that.

I do know the basics of what CFRD is, though treatment is probably newer in Japan than say, in the States. I also feel I'd have to put what knowledge is available on the net to get a good enough idea as to how to deal with it. I'm still hoping I haven't become diabetic, but since it is a probability, then whatever I know will be helpful to what the docs need to know (though I wish they knew more of this than I did!).

I can get into the basics with the lungs and pancreatic deficiency with just personal experience and knowledge, but I couldn't say whether kidneys are involved or not, mostly since I haven't had any kidney issues. I know the heart will be affected based on how the lungs supply oxygen, but since I don't have heart issues I don't think I have to go much farther than that in the outline.

I suppose if I got far enough into the basics of how the genetics of cf affects a certain blah-blah-blah that, in turn affects the mucous production, it may erase their thought that CF wasn't caught by someone on the train or sometime during my childhood or other strange hypothesis that unexperienced doctors come up with everytime they meet their first CF patient.

I was hoping for some ideas/added input frim this site to this question so that I can come up with an effective way to explain CF without getting short-winded (we know how fast that will happen), or without getting upset because I feel that I keep repeating myself too much.

I hoped that after everyone's input, I could get an outline made up, and I'd be willing to share it. Right now I'm not sure where to start, really.
 
6

65rosessamurai

Guest
Just in the past month I had seen two docs and had gotten the realization that the wife still doesn't understand CF, either.

Before I go on to taking the time to make an outline and presenting it to the CF community, I wanted to ask if anyone has already come up with some sort of "outline" or "presentation" of what CF is.

It seems that I need to add what sort of organs are affected by CF and HOW they are affected. I don't know how the liver is affected, so I have to do research on that.

I do know the basics of what CFRD is, though treatment is probably newer in Japan than say, in the States. I also feel I'd have to put what knowledge is available on the net to get a good enough idea as to how to deal with it. I'm still hoping I haven't become diabetic, but since it is a probability, then whatever I know will be helpful to what the docs need to know (though I wish they knew more of this than I did!).

I can get into the basics with the lungs and pancreatic deficiency with just personal experience and knowledge, but I couldn't say whether kidneys are involved or not, mostly since I haven't had any kidney issues. I know the heart will be affected based on how the lungs supply oxygen, but since I don't have heart issues I don't think I have to go much farther than that in the outline.

I suppose if I got far enough into the basics of how the genetics of cf affects a certain blah-blah-blah that, in turn affects the mucous production, it may erase their thought that CF wasn't caught by someone on the train or sometime during my childhood or other strange hypothesis that unexperienced doctors come up with everytime they meet their first CF patient.

I was hoping for some ideas/added input frim this site to this question so that I can come up with an effective way to explain CF without getting short-winded (we know how fast that will happen), or without getting upset because I feel that I keep repeating myself too much.

I hoped that after everyone's input, I could get an outline made up, and I'd be willing to share it. Right now I'm not sure where to start, really.
 
6

65rosessamurai

Guest
Just in the past month I had seen two docs and had gotten the realization that the wife still doesn't understand CF, either.
<br />
<br />Before I go on to taking the time to make an outline and presenting it to the CF community, I wanted to ask if anyone has already come up with some sort of "outline" or "presentation" of what CF is.
<br />
<br />It seems that I need to add what sort of organs are affected by CF and HOW they are affected. I don't know how the liver is affected, so I have to do research on that.
<br />
<br />I do know the basics of what CFRD is, though treatment is probably newer in Japan than say, in the States. I also feel I'd have to put what knowledge is available on the net to get a good enough idea as to how to deal with it. I'm still hoping I haven't become diabetic, but since it is a probability, then whatever I know will be helpful to what the docs need to know (though I wish they knew more of this than I did!).
<br />
<br />I can get into the basics with the lungs and pancreatic deficiency with just personal experience and knowledge, but I couldn't say whether kidneys are involved or not, mostly since I haven't had any kidney issues. I know the heart will be affected based on how the lungs supply oxygen, but since I don't have heart issues I don't think I have to go much farther than that in the outline.
<br />
<br />I suppose if I got far enough into the basics of how the genetics of cf affects a certain blah-blah-blah that, in turn affects the mucous production, it may erase their thought that CF wasn't caught by someone on the train or sometime during my childhood or other strange hypothesis that unexperienced doctors come up with everytime they meet their first CF patient.
<br />
<br />I was hoping for some ideas/added input frim this site to this question so that I can come up with an effective way to explain CF without getting short-winded (we know how fast that will happen), or without getting upset because I feel that I keep repeating myself too much.
<br />
<br />I hoped that after everyone's input, I could get an outline made up, and I'd be willing to share it. Right now I'm not sure where to start, really.
 
R

Ratatosk

Administrator
Staff member
Could you translate some of the info from the document the CFRI put together for CF in the classroom or some of the publications the CFF has on their site?

Also, my SIL was having a health fair at her company and the CFF sent her a pamphlet explaining it in easier to understand terms. So maybe you could have some items printed out and send them to your doctor prior to an appointment or take along with you.
 
R

Ratatosk

Administrator
Staff member
Could you translate some of the info from the document the CFRI put together for CF in the classroom or some of the publications the CFF has on their site?

Also, my SIL was having a health fair at her company and the CFF sent her a pamphlet explaining it in easier to understand terms. So maybe you could have some items printed out and send them to your doctor prior to an appointment or take along with you.
 
R

Ratatosk

Administrator
Staff member
Could you translate some of the info from the document the CFRI put together for CF in the classroom or some of the publications the CFF has on their site?

Also, my SIL was having a health fair at her company and the CFF sent her a pamphlet explaining it in easier to understand terms. So maybe you could have some items printed out and send them to your doctor prior to an appointment or take along with you.
 
R

Ratatosk

Administrator
Staff member
Could you translate some of the info from the document the CFRI put together for CF in the classroom or some of the publications the CFF has on their site?

Also, my SIL was having a health fair at her company and the CFF sent her a pamphlet explaining it in easier to understand terms. So maybe you could have some items printed out and send them to your doctor prior to an appointment or take along with you.
 
R

Ratatosk

Administrator
Staff member
Could you translate some of the info from the document the CFRI put together for CF in the classroom or some of the publications the CFF has on their site?
<br />
<br />Also, my SIL was having a health fair at her company and the CFF sent her a pamphlet explaining it in easier to understand terms. So maybe you could have some items printed out and send them to your doctor prior to an appointment or take along with you.
 
H

Havoc

New member
As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.

If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.
 
H

Havoc

New member
As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.

If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.
 
H

Havoc

New member
As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.

If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.
 
H

Havoc

New member
As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.

If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.
 
H

Havoc

New member
As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.
<br />
<br />If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.
 
6

65rosessamurai

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

As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.



If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.</end quote></div>

Thank You Havoc for your input but apparently you are not aware of my circumstances. If I were to run from that office, I'd be leaving a country to find such a doc and I don't have that kind of option availabe to me.

I had been living in Japan for over 16 years and had only recently been developing enough cf complications to have to deal with doctors that only know of about 30 patients in the entire population who have CF. So, they may have heard of it, but have never dealt with it nor do they have the meds available like whats available in the states.

In addition, I had been able to survive in Japan without the needs that a "textbook CF patient" needs. For example, I haven't needed any nebs up until two or three years ago, and although I was on enzymes for a long time, I had been without enzymes since I've been to Japan and had been able to survive due to the different diet. Just as an added example, I haven't been hospitalized for CF since I was 18 yrs old. But, yes I do have the symptoms and passed the sweat test (meaning I was positive for having CF) when I was about 8 years old.

Ratatosk, thank you for the advice. I think I will take a look at what I can download from the cff to either translate or use as an outline for what the best way would be to explain to the docs about CF and my complications.

Thank You all for your attention.
 
6

65rosessamurai

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

As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.



If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.</end quote></div>

Thank You Havoc for your input but apparently you are not aware of my circumstances. If I were to run from that office, I'd be leaving a country to find such a doc and I don't have that kind of option availabe to me.

I had been living in Japan for over 16 years and had only recently been developing enough cf complications to have to deal with doctors that only know of about 30 patients in the entire population who have CF. So, they may have heard of it, but have never dealt with it nor do they have the meds available like whats available in the states.

In addition, I had been able to survive in Japan without the needs that a "textbook CF patient" needs. For example, I haven't needed any nebs up until two or three years ago, and although I was on enzymes for a long time, I had been without enzymes since I've been to Japan and had been able to survive due to the different diet. Just as an added example, I haven't been hospitalized for CF since I was 18 yrs old. But, yes I do have the symptoms and passed the sweat test (meaning I was positive for having CF) when I was about 8 years old.

Ratatosk, thank you for the advice. I think I will take a look at what I can download from the cff to either translate or use as an outline for what the best way would be to explain to the docs about CF and my complications.

Thank You all for your attention.
 
6

65rosessamurai

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

As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.



If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.</end quote></div>

Thank You Havoc for your input but apparently you are not aware of my circumstances. If I were to run from that office, I'd be leaving a country to find such a doc and I don't have that kind of option availabe to me.

I had been living in Japan for over 16 years and had only recently been developing enough cf complications to have to deal with doctors that only know of about 30 patients in the entire population who have CF. So, they may have heard of it, but have never dealt with it nor do they have the meds available like whats available in the states.

In addition, I had been able to survive in Japan without the needs that a "textbook CF patient" needs. For example, I haven't needed any nebs up until two or three years ago, and although I was on enzymes for a long time, I had been without enzymes since I've been to Japan and had been able to survive due to the different diet. Just as an added example, I haven't been hospitalized for CF since I was 18 yrs old. But, yes I do have the symptoms and passed the sweat test (meaning I was positive for having CF) when I was about 8 years old.

Ratatosk, thank you for the advice. I think I will take a look at what I can download from the cff to either translate or use as an outline for what the best way would be to explain to the docs about CF and my complications.

Thank You all for your attention.
 
6

65rosessamurai

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

As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.



If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.</end quote>

Thank You Havoc for your input but apparently you are not aware of my circumstances. If I were to run from that office, I'd be leaving a country to find such a doc and I don't have that kind of option availabe to me.

I had been living in Japan for over 16 years and had only recently been developing enough cf complications to have to deal with doctors that only know of about 30 patients in the entire population who have CF. So, they may have heard of it, but have never dealt with it nor do they have the meds available like whats available in the states.

In addition, I had been able to survive in Japan without the needs that a "textbook CF patient" needs. For example, I haven't needed any nebs up until two or three years ago, and although I was on enzymes for a long time, I had been without enzymes since I've been to Japan and had been able to survive due to the different diet. Just as an added example, I haven't been hospitalized for CF since I was 18 yrs old. But, yes I do have the symptoms and passed the sweat test (meaning I was positive for having CF) when I was about 8 years old.

Ratatosk, thank you for the advice. I think I will take a look at what I can download from the cff to either translate or use as an outline for what the best way would be to explain to the docs about CF and my complications.

Thank You all for your attention.
 
6

65rosessamurai

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i>
<br />
<br />As a physician you would think that it would be completely within his/her realm to adequately research CF and understand it. I realize that as a non-CF specialist that there's a slight learning curve, but come on we are talking about medical professionals here. Secondly, you having CF all you life are well informed, and nobody knows your body better than you do. If your doc is open to your suggestions it might be well worth your while to just devise your own treatment plans based on your knowledge and experience. That's essentially what I do, although I am lucky enough to have an entire team of specialists. I simply prefer to have a measure of control in my treatment plans.
<br />
<br />
<br />
<br />If you feel you have to dumb down a CFF paper on CF so your doc can understand, you should be running from that office and finding a doc who has a clue.</end quote>
<br />
<br />Thank You Havoc for your input but apparently you are not aware of my circumstances. If I were to run from that office, I'd be leaving a country to find such a doc and I don't have that kind of option availabe to me.
<br />
<br />I had been living in Japan for over 16 years and had only recently been developing enough cf complications to have to deal with doctors that only know of about 30 patients in the entire population who have CF. So, they may have heard of it, but have never dealt with it nor do they have the meds available like whats available in the states.
<br />
<br />In addition, I had been able to survive in Japan without the needs that a "textbook CF patient" needs. For example, I haven't needed any nebs up until two or three years ago, and although I was on enzymes for a long time, I had been without enzymes since I've been to Japan and had been able to survive due to the different diet. Just as an added example, I haven't been hospitalized for CF since I was 18 yrs old. But, yes I do have the symptoms and passed the sweat test (meaning I was positive for having CF) when I was about 8 years old.
<br />
<br />Ratatosk, thank you for the advice. I think I will take a look at what I can download from the cff to either translate or use as an outline for what the best way would be to explain to the docs about CF and my complications.
<br />
<br />Thank You all for your attention.
 
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