give me what i want

stillkicking

New member
Yep, like CF4life, I went out and found a doc to work with me. He's a family practioner, but I know what I need and when I need it. He's great to work with. I tell him the tests I want to run, what medicine I think will work, and when/where to do it all and he agrees that I know what I'm doing. I'm happier than I've ever been in my life!
 

stillkicking

New member
Yep, like CF4life, I went out and found a doc to work with me. He's a family practioner, but I know what I need and when I need it. He's great to work with. I tell him the tests I want to run, what medicine I think will work, and when/where to do it all and he agrees that I know what I'm doing. I'm happier than I've ever been in my life!
 

stillkicking

New member
Yep, like CF4life, I went out and found a doc to work with me. He's a family practioner, but I know what I need and when I need it. He's great to work with. I tell him the tests I want to run, what medicine I think will work, and when/where to do it all and he agrees that I know what I'm doing. I'm happier than I've ever been in my life!
 

stillkicking

New member
Yep, like CF4life, I went out and found a doc to work with me. He's a family practioner, but I know what I need and when I need it. He's great to work with. I tell him the tests I want to run, what medicine I think will work, and when/where to do it all and he agrees that I know what I'm doing. I'm happier than I've ever been in my life!
 

stillkicking

New member
Yep, like CF4life, I went out and found a doc to work with me. He's a family practioner, but I know what I need and when I need it. He's great to work with. I tell him the tests I want to run, what medicine I think will work, and when/where to do it all and he agrees that I know what I'm doing. I'm happier than I've ever been in my life!
 

static

New member
"clinical nurse comes in and scolds me because its been over 1.5 years since my last regular cf clinic visit."

We sometimes have to take a step back and look at it from the clinics perspective. They haven't heard from you at all for quite some time and then when you do need them you want it done instantly without question, which isn't always the best idea.

While you may already know the test results from the study visits (and if that was your primary care then that is perfectly fine, but there has to be some sort of communication between either the study doctor and your primary doctor or you and your primary doctor) the doctor may not and making you do a few more tests beats a malpractice lawsuite any day.

I think it is safe to say we all had the feeling "what do I need a doctor for anyways" since alot of the infections we get are re-occuring and a pattern of antibiotic treatments begins to develop, but in the off-chance that something new does pop up you'll be glad the doctor was able to catch it.
 

static

New member
"clinical nurse comes in and scolds me because its been over 1.5 years since my last regular cf clinic visit."

We sometimes have to take a step back and look at it from the clinics perspective. They haven't heard from you at all for quite some time and then when you do need them you want it done instantly without question, which isn't always the best idea.

While you may already know the test results from the study visits (and if that was your primary care then that is perfectly fine, but there has to be some sort of communication between either the study doctor and your primary doctor or you and your primary doctor) the doctor may not and making you do a few more tests beats a malpractice lawsuite any day.

I think it is safe to say we all had the feeling "what do I need a doctor for anyways" since alot of the infections we get are re-occuring and a pattern of antibiotic treatments begins to develop, but in the off-chance that something new does pop up you'll be glad the doctor was able to catch it.
 

static

New member
"clinical nurse comes in and scolds me because its been over 1.5 years since my last regular cf clinic visit."

We sometimes have to take a step back and look at it from the clinics perspective. They haven't heard from you at all for quite some time and then when you do need them you want it done instantly without question, which isn't always the best idea.

While you may already know the test results from the study visits (and if that was your primary care then that is perfectly fine, but there has to be some sort of communication between either the study doctor and your primary doctor or you and your primary doctor) the doctor may not and making you do a few more tests beats a malpractice lawsuite any day.

I think it is safe to say we all had the feeling "what do I need a doctor for anyways" since alot of the infections we get are re-occuring and a pattern of antibiotic treatments begins to develop, but in the off-chance that something new does pop up you'll be glad the doctor was able to catch it.
 

static

New member
"clinical nurse comes in and scolds me because its been over 1.5 years since my last regular cf clinic visit."

We sometimes have to take a step back and look at it from the clinics perspective. They haven't heard from you at all for quite some time and then when you do need them you want it done instantly without question, which isn't always the best idea.

While you may already know the test results from the study visits (and if that was your primary care then that is perfectly fine, but there has to be some sort of communication between either the study doctor and your primary doctor or you and your primary doctor) the doctor may not and making you do a few more tests beats a malpractice lawsuite any day.

I think it is safe to say we all had the feeling "what do I need a doctor for anyways" since alot of the infections we get are re-occuring and a pattern of antibiotic treatments begins to develop, but in the off-chance that something new does pop up you'll be glad the doctor was able to catch it.
 

static

New member
"clinical nurse comes in and scolds me because its been over 1.5 years since my last regular cf clinic visit."
<br />
<br />We sometimes have to take a step back and look at it from the clinics perspective. They haven't heard from you at all for quite some time and then when you do need them you want it done instantly without question, which isn't always the best idea.
<br />
<br />While you may already know the test results from the study visits (and if that was your primary care then that is perfectly fine, but there has to be some sort of communication between either the study doctor and your primary doctor or you and your primary doctor) the doctor may not and making you do a few more tests beats a malpractice lawsuite any day.
<br />
<br />I think it is safe to say we all had the feeling "what do I need a doctor for anyways" since alot of the infections we get are re-occuring and a pattern of antibiotic treatments begins to develop, but in the off-chance that something new does pop up you'll be glad the doctor was able to catch it.
 

xosder22

Member
the doc that oversees the studies is exactly the same doc that i would see in clinic.

so its not like they have not seen or heard from me whatsoever.

also the study coordinator and the clinical nurse work together under the same doctor.

what pisses me off most is that they treat me like all the other patients that go here. a majority of which are jobless and most r probably lazy and dont do their medication like prescribed.

i on the other hand work 42.5 hrs a week every week. i do my meds and vest without fail. i see the doc and study coordinator at least once a month sometime twice a month for the last year and a half since i started doing every study that i qualify for.

why must i be treated like im a worthless slug.

i work 545am to 2pm often with no break because federal mandates on breaks do not apply to law enforcement.

i get up at 3am on work days just so that i can do my meds and the vest. i go to sleep most days a 7pm.

so just let me plug along with my somewhat normal life and let me decide the necessity of seeing the doc whether it being at a study visit or regular clinic visit.
 

xosder22

Member
the doc that oversees the studies is exactly the same doc that i would see in clinic.

so its not like they have not seen or heard from me whatsoever.

also the study coordinator and the clinical nurse work together under the same doctor.

what pisses me off most is that they treat me like all the other patients that go here. a majority of which are jobless and most r probably lazy and dont do their medication like prescribed.

i on the other hand work 42.5 hrs a week every week. i do my meds and vest without fail. i see the doc and study coordinator at least once a month sometime twice a month for the last year and a half since i started doing every study that i qualify for.

why must i be treated like im a worthless slug.

i work 545am to 2pm often with no break because federal mandates on breaks do not apply to law enforcement.

i get up at 3am on work days just so that i can do my meds and the vest. i go to sleep most days a 7pm.

so just let me plug along with my somewhat normal life and let me decide the necessity of seeing the doc whether it being at a study visit or regular clinic visit.
 

xosder22

Member
the doc that oversees the studies is exactly the same doc that i would see in clinic.

so its not like they have not seen or heard from me whatsoever.

also the study coordinator and the clinical nurse work together under the same doctor.

what pisses me off most is that they treat me like all the other patients that go here. a majority of which are jobless and most r probably lazy and dont do their medication like prescribed.

i on the other hand work 42.5 hrs a week every week. i do my meds and vest without fail. i see the doc and study coordinator at least once a month sometime twice a month for the last year and a half since i started doing every study that i qualify for.

why must i be treated like im a worthless slug.

i work 545am to 2pm often with no break because federal mandates on breaks do not apply to law enforcement.

i get up at 3am on work days just so that i can do my meds and the vest. i go to sleep most days a 7pm.

so just let me plug along with my somewhat normal life and let me decide the necessity of seeing the doc whether it being at a study visit or regular clinic visit.
 

xosder22

Member
the doc that oversees the studies is exactly the same doc that i would see in clinic.

so its not like they have not seen or heard from me whatsoever.

also the study coordinator and the clinical nurse work together under the same doctor.

what pisses me off most is that they treat me like all the other patients that go here. a majority of which are jobless and most r probably lazy and dont do their medication like prescribed.

i on the other hand work 42.5 hrs a week every week. i do my meds and vest without fail. i see the doc and study coordinator at least once a month sometime twice a month for the last year and a half since i started doing every study that i qualify for.

why must i be treated like im a worthless slug.

i work 545am to 2pm often with no break because federal mandates on breaks do not apply to law enforcement.

i get up at 3am on work days just so that i can do my meds and the vest. i go to sleep most days a 7pm.

so just let me plug along with my somewhat normal life and let me decide the necessity of seeing the doc whether it being at a study visit or regular clinic visit.
 

xosder22

Member
the doc that oversees the studies is exactly the same doc that i would see in clinic.
<br />
<br />so its not like they have not seen or heard from me whatsoever.
<br />
<br />also the study coordinator and the clinical nurse work together under the same doctor.
<br />
<br />what pisses me off most is that they treat me like all the other patients that go here. a majority of which are jobless and most r probably lazy and dont do their medication like prescribed.
<br />
<br />i on the other hand work 42.5 hrs a week every week. i do my meds and vest without fail. i see the doc and study coordinator at least once a month sometime twice a month for the last year and a half since i started doing every study that i qualify for.
<br />
<br />why must i be treated like im a worthless slug.
<br />
<br />i work 545am to 2pm often with no break because federal mandates on breaks do not apply to law enforcement.
<br />
<br />i get up at 3am on work days just so that i can do my meds and the vest. i go to sleep most days a 7pm.
<br />
<br />so just let me plug along with my somewhat normal life and let me decide the necessity of seeing the doc whether it being at a study visit or regular clinic visit.
 

static

New member
"a majority of which are jobless and most r probably lazy and dont do their medication like prescribed."

I know you just wrote this out of anger, but still that statement is totally unfair. In almost all cases once the lungs have been damaged for whatever reason there is no going back (with the exception of a transplant, and then the non-compliant people will really get nailed). At lower lung functions people can get just as tired as you after only doing one treatment, while you just put in a full day of work.

It is great that you are taking such good care of yourself and allowing yourself to run at full everyday, but have a little consideration for the people starting the day on empty. CF or not, someday we will all have to start the day on empty.
 

static

New member
"a majority of which are jobless and most r probably lazy and dont do their medication like prescribed."

I know you just wrote this out of anger, but still that statement is totally unfair. In almost all cases once the lungs have been damaged for whatever reason there is no going back (with the exception of a transplant, and then the non-compliant people will really get nailed). At lower lung functions people can get just as tired as you after only doing one treatment, while you just put in a full day of work.

It is great that you are taking such good care of yourself and allowing yourself to run at full everyday, but have a little consideration for the people starting the day on empty. CF or not, someday we will all have to start the day on empty.
 

static

New member
"a majority of which are jobless and most r probably lazy and dont do their medication like prescribed."

I know you just wrote this out of anger, but still that statement is totally unfair. In almost all cases once the lungs have been damaged for whatever reason there is no going back (with the exception of a transplant, and then the non-compliant people will really get nailed). At lower lung functions people can get just as tired as you after only doing one treatment, while you just put in a full day of work.

It is great that you are taking such good care of yourself and allowing yourself to run at full everyday, but have a little consideration for the people starting the day on empty. CF or not, someday we will all have to start the day on empty.
 

static

New member
"a majority of which are jobless and most r probably lazy and dont do their medication like prescribed."

I know you just wrote this out of anger, but still that statement is totally unfair. In almost all cases once the lungs have been damaged for whatever reason there is no going back (with the exception of a transplant, and then the non-compliant people will really get nailed). At lower lung functions people can get just as tired as you after only doing one treatment, while you just put in a full day of work.

It is great that you are taking such good care of yourself and allowing yourself to run at full everyday, but have a little consideration for the people starting the day on empty. CF or not, someday we will all have to start the day on empty.
 

static

New member
"a majority of which are jobless and most r probably lazy and dont do their medication like prescribed."
<br />
<br />I know you just wrote this out of anger, but still that statement is totally unfair. In almost all cases once the lungs have been damaged for whatever reason there is no going back (with the exception of a transplant, and then the non-compliant people will really get nailed). At lower lung functions people can get just as tired as you after only doing one treatment, while you just put in a full day of work.
<br />
<br />It is great that you are taking such good care of yourself and allowing yourself to run at full everyday, but have a little consideration for the people starting the day on empty. CF or not, someday we will all have to start the day on empty.
 
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