philosophy of care

M

mom2lillian

New member
If I could only say one thing about my approach it is that I am and EDUCATED patient! I read, discuss, listen to everythign that might affect me--CF related or not. I may not have a phD BUT I have lived in this body 28 years and THAT makes me an expert but ONLY if I do my reading and understanding and can 'hold' a conversation, defend my points and lay out my position. The only hard part is finding a doctor that is not intimidated or put off by this. In otherwords I want a PARTNERSHIP because lets face it I have ALOT more invested in teh relationship, ALOT more at stake, and a doctor has dozens of other patients to worry about I only have ME and my best interest.

I am pro-active, compliant, and aggressive. I try to look at the body as a whole picture and not just focus on my 'lung health'. I do my treatments religiously, excercise, try to eat healthfully etc. For instance I am getting a sleep med study not because I think my oxygen is low but because I notice some nights I just dont sleep well and I want to make sure there is nothing that can be 'fixed' so I dont run myself down.

I woudl rather errr on teh side of too many meds for a few better days as long as my liver and kidneys are looking good. When the debate over more vs less meds comes around I KNOW my lungs are going to fail there is a chance my detox systems might, I will err on the side of the healthier (kidneys etc) body part unless they start having a hard time. I would rather treat early then let it get out of hand.

I would like to take meds that are new and progressive but I also dont want to take unneeded or unnecessary risks now that I have a family. Meaning if the data is there and it seems safe even if its not yet approved for CF then Iwould consider it after my own investigating--such as xolair. As far as alternative treatments I do believe we vastly overlook this avenue and again after looking at research and weighing safety then I will try other things. Right now I am limited on this side because of pregnancy/nursing--I anticipate doing more in the future. I would not however run out and eat a pound of curcumin after a lab rat showed improvement.

I want to be 100% compliant with what I need to do but I also do what I would call 'risk management' assessments meaning sometimes, in my opinion, something does have to be missed or I might do something ot save time.

SO overall you could call my plan an EDUCATED CONSERVATIVE!
 
M

mom2lillian

New member
If I could only say one thing about my approach it is that I am and EDUCATED patient! I read, discuss, listen to everythign that might affect me--CF related or not. I may not have a phD BUT I have lived in this body 28 years and THAT makes me an expert but ONLY if I do my reading and understanding and can 'hold' a conversation, defend my points and lay out my position. The only hard part is finding a doctor that is not intimidated or put off by this. In otherwords I want a PARTNERSHIP because lets face it I have ALOT more invested in teh relationship, ALOT more at stake, and a doctor has dozens of other patients to worry about I only have ME and my best interest.

I am pro-active, compliant, and aggressive. I try to look at the body as a whole picture and not just focus on my 'lung health'. I do my treatments religiously, excercise, try to eat healthfully etc. For instance I am getting a sleep med study not because I think my oxygen is low but because I notice some nights I just dont sleep well and I want to make sure there is nothing that can be 'fixed' so I dont run myself down.

I woudl rather errr on teh side of too many meds for a few better days as long as my liver and kidneys are looking good. When the debate over more vs less meds comes around I KNOW my lungs are going to fail there is a chance my detox systems might, I will err on the side of the healthier (kidneys etc) body part unless they start having a hard time. I would rather treat early then let it get out of hand.

I would like to take meds that are new and progressive but I also dont want to take unneeded or unnecessary risks now that I have a family. Meaning if the data is there and it seems safe even if its not yet approved for CF then Iwould consider it after my own investigating--such as xolair. As far as alternative treatments I do believe we vastly overlook this avenue and again after looking at research and weighing safety then I will try other things. Right now I am limited on this side because of pregnancy/nursing--I anticipate doing more in the future. I would not however run out and eat a pound of curcumin after a lab rat showed improvement.

I want to be 100% compliant with what I need to do but I also do what I would call 'risk management' assessments meaning sometimes, in my opinion, something does have to be missed or I might do something ot save time.

SO overall you could call my plan an EDUCATED CONSERVATIVE!
 
M

mom2lillian

New member
If I could only say one thing about my approach it is that I am and EDUCATED patient! I read, discuss, listen to everythign that might affect me--CF related or not. I may not have a phD BUT I have lived in this body 28 years and THAT makes me an expert but ONLY if I do my reading and understanding and can 'hold' a conversation, defend my points and lay out my position. The only hard part is finding a doctor that is not intimidated or put off by this. In otherwords I want a PARTNERSHIP because lets face it I have ALOT more invested in teh relationship, ALOT more at stake, and a doctor has dozens of other patients to worry about I only have ME and my best interest.

I am pro-active, compliant, and aggressive. I try to look at the body as a whole picture and not just focus on my 'lung health'. I do my treatments religiously, excercise, try to eat healthfully etc. For instance I am getting a sleep med study not because I think my oxygen is low but because I notice some nights I just dont sleep well and I want to make sure there is nothing that can be 'fixed' so I dont run myself down.

I woudl rather errr on teh side of too many meds for a few better days as long as my liver and kidneys are looking good. When the debate over more vs less meds comes around I KNOW my lungs are going to fail there is a chance my detox systems might, I will err on the side of the healthier (kidneys etc) body part unless they start having a hard time. I would rather treat early then let it get out of hand.

I would like to take meds that are new and progressive but I also dont want to take unneeded or unnecessary risks now that I have a family. Meaning if the data is there and it seems safe even if its not yet approved for CF then Iwould consider it after my own investigating--such as xolair. As far as alternative treatments I do believe we vastly overlook this avenue and again after looking at research and weighing safety then I will try other things. Right now I am limited on this side because of pregnancy/nursing--I anticipate doing more in the future. I would not however run out and eat a pound of curcumin after a lab rat showed improvement.

I want to be 100% compliant with what I need to do but I also do what I would call 'risk management' assessments meaning sometimes, in my opinion, something does have to be missed or I might do something ot save time.

SO overall you could call my plan an EDUCATED CONSERVATIVE!
 
M

mom2lillian

New member
If I could only say one thing about my approach it is that I am and EDUCATED patient! I read, discuss, listen to everythign that might affect me--CF related or not. I may not have a phD BUT I have lived in this body 28 years and THAT makes me an expert but ONLY if I do my reading and understanding and can 'hold' a conversation, defend my points and lay out my position. The only hard part is finding a doctor that is not intimidated or put off by this. In otherwords I want a PARTNERSHIP because lets face it I have ALOT more invested in teh relationship, ALOT more at stake, and a doctor has dozens of other patients to worry about I only have ME and my best interest.

I am pro-active, compliant, and aggressive. I try to look at the body as a whole picture and not just focus on my 'lung health'. I do my treatments religiously, excercise, try to eat healthfully etc. For instance I am getting a sleep med study not because I think my oxygen is low but because I notice some nights I just dont sleep well and I want to make sure there is nothing that can be 'fixed' so I dont run myself down.

I woudl rather errr on teh side of too many meds for a few better days as long as my liver and kidneys are looking good. When the debate over more vs less meds comes around I KNOW my lungs are going to fail there is a chance my detox systems might, I will err on the side of the healthier (kidneys etc) body part unless they start having a hard time. I would rather treat early then let it get out of hand.

I would like to take meds that are new and progressive but I also dont want to take unneeded or unnecessary risks now that I have a family. Meaning if the data is there and it seems safe even if its not yet approved for CF then Iwould consider it after my own investigating--such as xolair. As far as alternative treatments I do believe we vastly overlook this avenue and again after looking at research and weighing safety then I will try other things. Right now I am limited on this side because of pregnancy/nursing--I anticipate doing more in the future. I would not however run out and eat a pound of curcumin after a lab rat showed improvement.

I want to be 100% compliant with what I need to do but I also do what I would call 'risk management' assessments meaning sometimes, in my opinion, something does have to be missed or I might do something ot save time.

SO overall you could call my plan an EDUCATED CONSERVATIVE!
 
M

mom2lillian

New member
If I could only say one thing about my approach it is that I am and EDUCATED patient! I read, discuss, listen to everythign that might affect me--CF related or not. I may not have a phD BUT I have lived in this body 28 years and THAT makes me an expert but ONLY if I do my reading and understanding and can 'hold' a conversation, defend my points and lay out my position. The only hard part is finding a doctor that is not intimidated or put off by this. In otherwords I want a PARTNERSHIP because lets face it I have ALOT more invested in teh relationship, ALOT more at stake, and a doctor has dozens of other patients to worry about I only have ME and my best interest.
<br />
<br />I am pro-active, compliant, and aggressive. I try to look at the body as a whole picture and not just focus on my 'lung health'. I do my treatments religiously, excercise, try to eat healthfully etc. For instance I am getting a sleep med study not because I think my oxygen is low but because I notice some nights I just dont sleep well and I want to make sure there is nothing that can be 'fixed' so I dont run myself down.
<br />
<br />I woudl rather errr on teh side of too many meds for a few better days as long as my liver and kidneys are looking good. When the debate over more vs less meds comes around I KNOW my lungs are going to fail there is a chance my detox systems might, I will err on the side of the healthier (kidneys etc) body part unless they start having a hard time. I would rather treat early then let it get out of hand.
<br />
<br />I would like to take meds that are new and progressive but I also dont want to take unneeded or unnecessary risks now that I have a family. Meaning if the data is there and it seems safe even if its not yet approved for CF then Iwould consider it after my own investigating--such as xolair. As far as alternative treatments I do believe we vastly overlook this avenue and again after looking at research and weighing safety then I will try other things. Right now I am limited on this side because of pregnancy/nursing--I anticipate doing more in the future. I would not however run out and eat a pound of curcumin after a lab rat showed improvement.
<br />
<br />I want to be 100% compliant with what I need to do but I also do what I would call 'risk management' assessments meaning sometimes, in my opinion, something does have to be missed or I might do something ot save time.
<br />
<br />SO overall you could call my plan an EDUCATED CONSERVATIVE!
 
M

MargaritaChic

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

This brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

</end quote></div>

I totally agree. That is one reason I find this site so helpful, because I can get honest answers from adults who live with and have struggled against CF.
 
M

MargaritaChic

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

This brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

</end quote></div>

I totally agree. That is one reason I find this site so helpful, because I can get honest answers from adults who live with and have struggled against CF.
 
M

MargaritaChic

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

This brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

</end quote></div>

I totally agree. That is one reason I find this site so helpful, because I can get honest answers from adults who live with and have struggled against CF.
 
M

MargaritaChic

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

This brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

</end quote>

I totally agree. That is one reason I find this site so helpful, because I can get honest answers from adults who live with and have struggled against CF.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NoExcuses</b></i>
<br />
<br />This brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.
<br />
<br /></end quote>
<br />
<br />I totally agree. That is one reason I find this site so helpful, because I can get honest answers from adults who live with and have struggled against CF.
<br />
<br />
 
J

jbrandonAW

New member
My approach has definatly changed since having a daughter.

I do plenty of physical excercise. I eat as healthy as I can. I also try to do as little medication as possible, however as soon as I notice a problem I get it treated right away. I also try and do as much PT as I can so that I don't have to do many medications.

As for medicine, I research the med, whats in it, how its made, side affects and everything before it goes into my body. (For myself, but also b/c I breastfeed)

I trust my doctor but I trust myself more. When it comes to treatments, normally I research them and I call them and tell them my plan, and most of the time they sign off on it. Of course you can't get IV meds without a doc. I don't just trust my doc hands down though, just as I don't trust my daughters pedi hands down when it comes to infant nutrition, breastfeeding, and vax's. Its sad but I know more about CF, illness, current meds and things vs some of my CF docs (not my new one I love her!!!)

Lately I have been trying to research some more "natural" ways, instead of antibiotics. This is because of kind of whats been stated above. I get tired of the constant having to take this and then adding that to fix something this caused.

* I am going to have to say I agree with the mom, my daughter comes first. I have advocated harder on her 1/2 over no vax then I have before on my health. So your right you do care differently for someone else vs yourself... they are more important.IMO
 
J

jbrandonAW

New member
My approach has definatly changed since having a daughter.

I do plenty of physical excercise. I eat as healthy as I can. I also try to do as little medication as possible, however as soon as I notice a problem I get it treated right away. I also try and do as much PT as I can so that I don't have to do many medications.

As for medicine, I research the med, whats in it, how its made, side affects and everything before it goes into my body. (For myself, but also b/c I breastfeed)

I trust my doctor but I trust myself more. When it comes to treatments, normally I research them and I call them and tell them my plan, and most of the time they sign off on it. Of course you can't get IV meds without a doc. I don't just trust my doc hands down though, just as I don't trust my daughters pedi hands down when it comes to infant nutrition, breastfeeding, and vax's. Its sad but I know more about CF, illness, current meds and things vs some of my CF docs (not my new one I love her!!!)

Lately I have been trying to research some more "natural" ways, instead of antibiotics. This is because of kind of whats been stated above. I get tired of the constant having to take this and then adding that to fix something this caused.

* I am going to have to say I agree with the mom, my daughter comes first. I have advocated harder on her 1/2 over no vax then I have before on my health. So your right you do care differently for someone else vs yourself... they are more important.IMO
 
J

jbrandonAW

New member
My approach has definatly changed since having a daughter.

I do plenty of physical excercise. I eat as healthy as I can. I also try to do as little medication as possible, however as soon as I notice a problem I get it treated right away. I also try and do as much PT as I can so that I don't have to do many medications.

As for medicine, I research the med, whats in it, how its made, side affects and everything before it goes into my body. (For myself, but also b/c I breastfeed)

I trust my doctor but I trust myself more. When it comes to treatments, normally I research them and I call them and tell them my plan, and most of the time they sign off on it. Of course you can't get IV meds without a doc. I don't just trust my doc hands down though, just as I don't trust my daughters pedi hands down when it comes to infant nutrition, breastfeeding, and vax's. Its sad but I know more about CF, illness, current meds and things vs some of my CF docs (not my new one I love her!!!)

Lately I have been trying to research some more "natural" ways, instead of antibiotics. This is because of kind of whats been stated above. I get tired of the constant having to take this and then adding that to fix something this caused.

* I am going to have to say I agree with the mom, my daughter comes first. I have advocated harder on her 1/2 over no vax then I have before on my health. So your right you do care differently for someone else vs yourself... they are more important.IMO
 
J

jbrandonAW

New member
My approach has definatly changed since having a daughter.

I do plenty of physical excercise. I eat as healthy as I can. I also try to do as little medication as possible, however as soon as I notice a problem I get it treated right away. I also try and do as much PT as I can so that I don't have to do many medications.

As for medicine, I research the med, whats in it, how its made, side affects and everything before it goes into my body. (For myself, but also b/c I breastfeed)

I trust my doctor but I trust myself more. When it comes to treatments, normally I research them and I call them and tell them my plan, and most of the time they sign off on it. Of course you can't get IV meds without a doc. I don't just trust my doc hands down though, just as I don't trust my daughters pedi hands down when it comes to infant nutrition, breastfeeding, and vax's. Its sad but I know more about CF, illness, current meds and things vs some of my CF docs (not my new one I love her!!!)

Lately I have been trying to research some more "natural" ways, instead of antibiotics. This is because of kind of whats been stated above. I get tired of the constant having to take this and then adding that to fix something this caused.

* I am going to have to say I agree with the mom, my daughter comes first. I have advocated harder on her 1/2 over no vax then I have before on my health. So your right you do care differently for someone else vs yourself... they are more important.IMO
 
J

jbrandonAW

New member
My approach has definatly changed since having a daughter.
<br />
<br />I do plenty of physical excercise. I eat as healthy as I can. I also try to do as little medication as possible, however as soon as I notice a problem I get it treated right away. I also try and do as much PT as I can so that I don't have to do many medications.
<br />
<br />As for medicine, I research the med, whats in it, how its made, side affects and everything before it goes into my body. (For myself, but also b/c I breastfeed)
<br />
<br />I trust my doctor but I trust myself more. When it comes to treatments, normally I research them and I call them and tell them my plan, and most of the time they sign off on it. Of course you can't get IV meds without a doc. I don't just trust my doc hands down though, just as I don't trust my daughters pedi hands down when it comes to infant nutrition, breastfeeding, and vax's. Its sad but I know more about CF, illness, current meds and things vs some of my CF docs (not my new one I love her!!!)
<br />
<br />Lately I have been trying to research some more "natural" ways, instead of antibiotics. This is because of kind of whats been stated above. I get tired of the constant having to take this and then adding that to fix something this caused.
<br />
<br />* I am going to have to say I agree with the mom, my daughter comes first. I have advocated harder on her 1/2 over no vax then I have before on my health. So your right you do care differently for someone else vs yourself... they are more important.IMO
 
R

Ricky123

New member
i dont think its healthy to do everything right all the time ie physio 1.5 hours a day plus all the other nebs etc you can end up getting obssesed about ya health to the detriment of other things ie social life etc
so i think a balance is imperative,with me i give myself a day off from time to time otherwise i find all the treatment to much and gets overwhelming yes the docters recomend this and that but they dont have to live with cf its all well and good instructing patients to be religious but i think this is unhealthy the way i see it is a day off from time to time is actually i think more beneficial to a patient(in my case anyway ) than the docters realise
 
R

Ricky123

New member
i dont think its healthy to do everything right all the time ie physio 1.5 hours a day plus all the other nebs etc you can end up getting obssesed about ya health to the detriment of other things ie social life etc
so i think a balance is imperative,with me i give myself a day off from time to time otherwise i find all the treatment to much and gets overwhelming yes the docters recomend this and that but they dont have to live with cf its all well and good instructing patients to be religious but i think this is unhealthy the way i see it is a day off from time to time is actually i think more beneficial to a patient(in my case anyway ) than the docters realise
 
R

Ricky123

New member
i dont think its healthy to do everything right all the time ie physio 1.5 hours a day plus all the other nebs etc you can end up getting obssesed about ya health to the detriment of other things ie social life etc
so i think a balance is imperative,with me i give myself a day off from time to time otherwise i find all the treatment to much and gets overwhelming yes the docters recomend this and that but they dont have to live with cf its all well and good instructing patients to be religious but i think this is unhealthy the way i see it is a day off from time to time is actually i think more beneficial to a patient(in my case anyway ) than the docters realise
 
R

Ricky123

New member
i dont think its healthy to do everything right all the time ie physio 1.5 hours a day plus all the other nebs etc you can end up getting obssesed about ya health to the detriment of other things ie social life etc
so i think a balance is imperative,with me i give myself a day off from time to time otherwise i find all the treatment to much and gets overwhelming yes the docters recomend this and that but they dont have to live with cf its all well and good instructing patients to be religious but i think this is unhealthy the way i see it is a day off from time to time is actually i think more beneficial to a patient(in my case anyway ) than the docters realise
 
R

Ricky123

New member
i dont think its healthy to do everything right all the time ie physio 1.5 hours a day plus all the other nebs etc you can end up getting obssesed about ya health to the detriment of other things ie social life etc
<br />so i think a balance is imperative,with me i give myself a day off from time to time otherwise i find all the treatment to much and gets overwhelming yes the docters recomend this and that but they dont have to live with cf its all well and good instructing patients to be religious but i think this is unhealthy the way i see it is a day off from time to time is actually i think more beneficial to a patient(in my case anyway ) than the docters realise
 
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