Drop in PFT's Does this sound werid?

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Ricky123

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

Unless you are on IV's already 3-4 times a year, I don't see a problem with trying them again, especially if you a drop of 4 or 5 percent in pft's.



Remember, in Europe its common to get IV's every 3 months regardless of your health status (if you have cf of course).



GOSH! I wish I had been as smart as you 10 years ago. If I had been as aggressive I probably wouldn't be as bad off as I am today.



I agree with Amy, perhaps your lungs are declining, but don't give up without a fight, especially if its been several months without IV's.</end quote></div>thats not entirely true i dont really have any ivs but i use other stuff instead ie flucoxlicin etc it depends on the centre iam at the brompton a specialist cf clinic in london england
 
R

Ricky123

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

Unless you are on IV's already 3-4 times a year, I don't see a problem with trying them again, especially if you a drop of 4 or 5 percent in pft's.



Remember, in Europe its common to get IV's every 3 months regardless of your health status (if you have cf of course).



GOSH! I wish I had been as smart as you 10 years ago. If I had been as aggressive I probably wouldn't be as bad off as I am today.



I agree with Amy, perhaps your lungs are declining, but don't give up without a fight, especially if its been several months without IV's.</end quote></div>thats not entirely true i dont really have any ivs but i use other stuff instead ie flucoxlicin etc it depends on the centre iam at the brompton a specialist cf clinic in london england
 
R

Ricky123

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

Unless you are on IV's already 3-4 times a year, I don't see a problem with trying them again, especially if you a drop of 4 or 5 percent in pft's.



Remember, in Europe its common to get IV's every 3 months regardless of your health status (if you have cf of course).



GOSH! I wish I had been as smart as you 10 years ago. If I had been as aggressive I probably wouldn't be as bad off as I am today.



I agree with Amy, perhaps your lungs are declining, but don't give up without a fight, especially if its been several months without IV's.</end quote></div>thats not entirely true i dont really have any ivs but i use other stuff instead ie flucoxlicin etc it depends on the centre iam at the brompton a specialist cf clinic in london england
 
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LeneSouthAfrica

New member
Go for a second opinion with a different clinic. Maybe they see many ill cystics and therefore think you are doing well by comparison, but you are the one living with it so you can tell. Don't play with ur health, ur body tells u when things aren't right, regardless of the 'numbers'. One IV med only? This sounds wrong, they always give a combination, one reason being your bugs are less likely to become resistant. Have they checked for <b>CF diabetes</b>(the test must be the glucose drinking one, not just the random blood screening as mine was undiagnosed until they did the full glucose tolerance test)? This sounds unrelated but unstable sugars = feeling crummy + more lung infections
 
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LeneSouthAfrica

New member
Go for a second opinion with a different clinic. Maybe they see many ill cystics and therefore think you are doing well by comparison, but you are the one living with it so you can tell. Don't play with ur health, ur body tells u when things aren't right, regardless of the 'numbers'. One IV med only? This sounds wrong, they always give a combination, one reason being your bugs are less likely to become resistant. Have they checked for <b>CF diabetes</b>(the test must be the glucose drinking one, not just the random blood screening as mine was undiagnosed until they did the full glucose tolerance test)? This sounds unrelated but unstable sugars = feeling crummy + more lung infections
 
L

LeneSouthAfrica

New member
Go for a second opinion with a different clinic. Maybe they see many ill cystics and therefore think you are doing well by comparison, but you are the one living with it so you can tell. Don't play with ur health, ur body tells u when things aren't right, regardless of the 'numbers'. One IV med only? This sounds wrong, they always give a combination, one reason being your bugs are less likely to become resistant. Have they checked for <b>CF diabetes</b>(the test must be the glucose drinking one, not just the random blood screening as mine was undiagnosed until they did the full glucose tolerance test)? This sounds unrelated but unstable sugars = feeling crummy + more lung infections
 
L

littledebbie

New member
I totally agree that you should try a different dr. because your Dr. should not be dismissing you this way. However, to make one suggestionn...have you asked why he is so hesitant to be more agressive with you at this stage? Maybe he is worried about something you don't know about. That happened to me once where my dr. didn't want to use a med I was pushing for but he wasn't knocking himself out explaining why unitl I just confronted him on it.

Also....maybe you could have him sit down with you and go over your chart for the last few years looking at your PFT's etc. and talk to him about your highs and lows and compare what each of you considers accpetable, try to get on the same page.

And finally I will say not in regards to your Dr.'s stinky unacceptable attitude. But on the topic of the loss of lung function to which you should get a second opinion. but to comment on the name of your thread...no the drop in PFT's you are describing does not seem the least bit wierd to me. I agree with Lindsey that it sounds entirely possible that at your peak you blew a high PFT (I almost dont even count those numbers they're so impossible to maintane) and your base line is likely a bit less and that amount of decline does not seem alarming. Your Dr.'s attitude, that IS alarming.
 
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littledebbie

New member
I totally agree that you should try a different dr. because your Dr. should not be dismissing you this way. However, to make one suggestionn...have you asked why he is so hesitant to be more agressive with you at this stage? Maybe he is worried about something you don't know about. That happened to me once where my dr. didn't want to use a med I was pushing for but he wasn't knocking himself out explaining why unitl I just confronted him on it.

Also....maybe you could have him sit down with you and go over your chart for the last few years looking at your PFT's etc. and talk to him about your highs and lows and compare what each of you considers accpetable, try to get on the same page.

And finally I will say not in regards to your Dr.'s stinky unacceptable attitude. But on the topic of the loss of lung function to which you should get a second opinion. but to comment on the name of your thread...no the drop in PFT's you are describing does not seem the least bit wierd to me. I agree with Lindsey that it sounds entirely possible that at your peak you blew a high PFT (I almost dont even count those numbers they're so impossible to maintane) and your base line is likely a bit less and that amount of decline does not seem alarming. Your Dr.'s attitude, that IS alarming.
 
L

littledebbie

New member
I totally agree that you should try a different dr. because your Dr. should not be dismissing you this way. However, to make one suggestionn...have you asked why he is so hesitant to be more agressive with you at this stage? Maybe he is worried about something you don't know about. That happened to me once where my dr. didn't want to use a med I was pushing for but he wasn't knocking himself out explaining why unitl I just confronted him on it.

Also....maybe you could have him sit down with you and go over your chart for the last few years looking at your PFT's etc. and talk to him about your highs and lows and compare what each of you considers accpetable, try to get on the same page.

And finally I will say not in regards to your Dr.'s stinky unacceptable attitude. But on the topic of the loss of lung function to which you should get a second opinion. but to comment on the name of your thread...no the drop in PFT's you are describing does not seem the least bit wierd to me. I agree with Lindsey that it sounds entirely possible that at your peak you blew a high PFT (I almost dont even count those numbers they're so impossible to maintane) and your base line is likely a bit less and that amount of decline does not seem alarming. Your Dr.'s attitude, that IS alarming.
 
D

DanG

New member
It sounds like your doctor is ok with letting your health decline because other people are worse off than you. That's not weird, that's bad medecine. What's that Hippocratic oath again? Get a second opinion or go see a doctor you were happy with but don't settle for worsening pulmonary health because those who do are guaranteed to get it and keep it.

Don't let your doctor tell you how healthy is good enough and don't let him "dumb down" your lungs to his center's average PFT (or worse) by brushing you off until you are at his concern threshold. That should piss you off no end. You have passed your concern threshold and it's time to wake him up. Yell into his stethoscope while he's listening to you if necessary.

Since every manifestation of CF is different even within the same populations of mutation types good CF care can only be individualized. Of course, CF is progressive but there's no set rate at which it progresses. I believe you have a degree of control over that rate and that it really matters what you do, what kind of care you get and how watchful you and your doctor are over changes. Aim high, and your health will stay better for longer than if you aim for good enough. Acceptance, fatalism, apathy are all dangerous to everyone's health but carry the certainty negative consequences for people with CF. If you accept the decline, then that becomes your new maximum; pretty soon you decline some more and that level is the new "I'm feeling sick" level and so on down the pft scale until one day you realize you've got big problems.

Any decline needs an explanation and indicates a change that may need action.

This type of doctoring might happen if a pulmonologist received the same percentage of their profession's pay scale as the average FEV1 of the patients in their care. Adjustable monthly to encourage rapid improvements.


Danny

36, d508 two times, thank you very much, and a host of other cf-related crap (cfrd, ra, bone loss...).
 
D

DanG

New member
It sounds like your doctor is ok with letting your health decline because other people are worse off than you. That's not weird, that's bad medecine. What's that Hippocratic oath again? Get a second opinion or go see a doctor you were happy with but don't settle for worsening pulmonary health because those who do are guaranteed to get it and keep it.

Don't let your doctor tell you how healthy is good enough and don't let him "dumb down" your lungs to his center's average PFT (or worse) by brushing you off until you are at his concern threshold. That should piss you off no end. You have passed your concern threshold and it's time to wake him up. Yell into his stethoscope while he's listening to you if necessary.

Since every manifestation of CF is different even within the same populations of mutation types good CF care can only be individualized. Of course, CF is progressive but there's no set rate at which it progresses. I believe you have a degree of control over that rate and that it really matters what you do, what kind of care you get and how watchful you and your doctor are over changes. Aim high, and your health will stay better for longer than if you aim for good enough. Acceptance, fatalism, apathy are all dangerous to everyone's health but carry the certainty negative consequences for people with CF. If you accept the decline, then that becomes your new maximum; pretty soon you decline some more and that level is the new "I'm feeling sick" level and so on down the pft scale until one day you realize you've got big problems.

Any decline needs an explanation and indicates a change that may need action.

This type of doctoring might happen if a pulmonologist received the same percentage of their profession's pay scale as the average FEV1 of the patients in their care. Adjustable monthly to encourage rapid improvements.


Danny

36, d508 two times, thank you very much, and a host of other cf-related crap (cfrd, ra, bone loss...).
 
D

DanG

New member
It sounds like your doctor is ok with letting your health decline because other people are worse off than you. That's not weird, that's bad medecine. What's that Hippocratic oath again? Get a second opinion or go see a doctor you were happy with but don't settle for worsening pulmonary health because those who do are guaranteed to get it and keep it.

Don't let your doctor tell you how healthy is good enough and don't let him "dumb down" your lungs to his center's average PFT (or worse) by brushing you off until you are at his concern threshold. That should piss you off no end. You have passed your concern threshold and it's time to wake him up. Yell into his stethoscope while he's listening to you if necessary.

Since every manifestation of CF is different even within the same populations of mutation types good CF care can only be individualized. Of course, CF is progressive but there's no set rate at which it progresses. I believe you have a degree of control over that rate and that it really matters what you do, what kind of care you get and how watchful you and your doctor are over changes. Aim high, and your health will stay better for longer than if you aim for good enough. Acceptance, fatalism, apathy are all dangerous to everyone's health but carry the certainty negative consequences for people with CF. If you accept the decline, then that becomes your new maximum; pretty soon you decline some more and that level is the new "I'm feeling sick" level and so on down the pft scale until one day you realize you've got big problems.

Any decline needs an explanation and indicates a change that may need action.

This type of doctoring might happen if a pulmonologist received the same percentage of their profession's pay scale as the average FEV1 of the patients in their care. Adjustable monthly to encourage rapid improvements.


Danny

36, d508 two times, thank you very much, and a host of other cf-related crap (cfrd, ra, bone loss...).
 
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