Hello everyone, NY CFer, new to this blog thing

dcgal

New member
Also wanted to add- Pls contact the clinic's Social Worker, his name is John Nash. He is very helpful when it comes to suggestions for medical expenses, talking w/ Drs etc.
 

dcgal

New member
Also wanted to add- Pls contact the clinic's Social Worker, his name is John Nash. He is very helpful when it comes to suggestions for medical expenses, talking w/ Drs etc.
 

dcgal

New member
Also wanted to add- Pls contact the clinic's Social Worker, his name is John Nash. He is very helpful when it comes to suggestions for medical expenses, talking w/ Drs etc.
 

dcgal

New member
Also wanted to add- Pls contact the clinic's Social Worker, his name is John Nash. He is very helpful when it comes to suggestions for medical expenses, talking w/ Drs etc.
 

dcgal

New member
Also wanted to add- Pls contact the clinic's Social Worker, his name is John Nash. He is very helpful when it comes to suggestions for medical expenses, talking w/ Drs etc.
 

Playswithpixels

New member
It was hard for me to change to an adult clinic too, but I do like my Doctors there. I agree with most of the post here, request another Dr, the clinic I go to has around 5 doctors, and I am sure you could see a different one. My feeling is this, if you don't feel like this doctor cares about you, that may rub off on you and effect the way you take care of yourself. As far as the HTS vs' pulmozyme, hands down for me pulmozyme wins. HTS hasn't done anything, at least that I've noticed. I don't agree with mockingbird (sorry if this isn't what you meant) in the playing dr stuff, I don't second guess my doctors but I do play a major role in my treatments and telling them about new things I've heard about. Most of them don't keep up with new breakthroughs in CF, they are just too busy. I also know that I can call my Doctor and request IV's and he knows me well enough to trust my judgement. We are the ones who control this disease, the doctors don't do our nebulizers, exercise or pop a handful of pills twice a day...we do, and I believe as a person with CF that I have the right to choose a doctor I feel comfotable with. That's my 2 cents...LOL

Andrea 32 w CF dx: 8 mos.
 

Playswithpixels

New member
It was hard for me to change to an adult clinic too, but I do like my Doctors there. I agree with most of the post here, request another Dr, the clinic I go to has around 5 doctors, and I am sure you could see a different one. My feeling is this, if you don't feel like this doctor cares about you, that may rub off on you and effect the way you take care of yourself. As far as the HTS vs' pulmozyme, hands down for me pulmozyme wins. HTS hasn't done anything, at least that I've noticed. I don't agree with mockingbird (sorry if this isn't what you meant) in the playing dr stuff, I don't second guess my doctors but I do play a major role in my treatments and telling them about new things I've heard about. Most of them don't keep up with new breakthroughs in CF, they are just too busy. I also know that I can call my Doctor and request IV's and he knows me well enough to trust my judgement. We are the ones who control this disease, the doctors don't do our nebulizers, exercise or pop a handful of pills twice a day...we do, and I believe as a person with CF that I have the right to choose a doctor I feel comfotable with. That's my 2 cents...LOL

Andrea 32 w CF dx: 8 mos.
 

Playswithpixels

New member
It was hard for me to change to an adult clinic too, but I do like my Doctors there. I agree with most of the post here, request another Dr, the clinic I go to has around 5 doctors, and I am sure you could see a different one. My feeling is this, if you don't feel like this doctor cares about you, that may rub off on you and effect the way you take care of yourself. As far as the HTS vs' pulmozyme, hands down for me pulmozyme wins. HTS hasn't done anything, at least that I've noticed. I don't agree with mockingbird (sorry if this isn't what you meant) in the playing dr stuff, I don't second guess my doctors but I do play a major role in my treatments and telling them about new things I've heard about. Most of them don't keep up with new breakthroughs in CF, they are just too busy. I also know that I can call my Doctor and request IV's and he knows me well enough to trust my judgement. We are the ones who control this disease, the doctors don't do our nebulizers, exercise or pop a handful of pills twice a day...we do, and I believe as a person with CF that I have the right to choose a doctor I feel comfotable with. That's my 2 cents...LOL

Andrea 32 w CF dx: 8 mos.
 

Playswithpixels

New member
It was hard for me to change to an adult clinic too, but I do like my Doctors there. I agree with most of the post here, request another Dr, the clinic I go to has around 5 doctors, and I am sure you could see a different one. My feeling is this, if you don't feel like this doctor cares about you, that may rub off on you and effect the way you take care of yourself. As far as the HTS vs' pulmozyme, hands down for me pulmozyme wins. HTS hasn't done anything, at least that I've noticed. I don't agree with mockingbird (sorry if this isn't what you meant) in the playing dr stuff, I don't second guess my doctors but I do play a major role in my treatments and telling them about new things I've heard about. Most of them don't keep up with new breakthroughs in CF, they are just too busy. I also know that I can call my Doctor and request IV's and he knows me well enough to trust my judgement. We are the ones who control this disease, the doctors don't do our nebulizers, exercise or pop a handful of pills twice a day...we do, and I believe as a person with CF that I have the right to choose a doctor I feel comfotable with. That's my 2 cents...LOL

Andrea 32 w CF dx: 8 mos.
 

Playswithpixels

New member
It was hard for me to change to an adult clinic too, but I do like my Doctors there. I agree with most of the post here, request another Dr, the clinic I go to has around 5 doctors, and I am sure you could see a different one. My feeling is this, if you don't feel like this doctor cares about you, that may rub off on you and effect the way you take care of yourself. As far as the HTS vs' pulmozyme, hands down for me pulmozyme wins. HTS hasn't done anything, at least that I've noticed. I don't agree with mockingbird (sorry if this isn't what you meant) in the playing dr stuff, I don't second guess my doctors but I do play a major role in my treatments and telling them about new things I've heard about. Most of them don't keep up with new breakthroughs in CF, they are just too busy. I also know that I can call my Doctor and request IV's and he knows me well enough to trust my judgement. We are the ones who control this disease, the doctors don't do our nebulizers, exercise or pop a handful of pills twice a day...we do, and I believe as a person with CF that I have the right to choose a doctor I feel comfotable with. That's my 2 cents...LOL

Andrea 32 w CF dx: 8 mos.
 

Jem

New member
First I want to welcome you to this forum. I am so sorry for what you are going through.

It is so important to be aggressive with your treatments. You have every right to be upset that your sputum culture results were not given to you in a timely manner. I have mine done every 3 months and get my results when the final report comes in. I also have them faxed to me for my own records. As far as birth control...I do not take birth control...never did but I do follow my cycle through natural family planning so am aware of my fertility. And in regards to Pulmozyme vs HS well, I do both...they each serve a different purpose and I have found them both to be important in my health care routine. For x-rays I get a chest cat scan every two years and have a glucose tolerance test done yearly. I always go in for my check up with a list of questions and my doctor goes through each one to my satisfaction. We have an excellent relationship and you deserve one too with your doctor.

You certainly sound like an educated woman and if you feel your treatment has been substandard then my all means either try another doctor in center or try a new cf center all together. It sounds like you have nothing to lose and everything to gain.

Let us know how it goes...keep your questions coming so that we can help you with our experiences.
 

Jem

New member
First I want to welcome you to this forum. I am so sorry for what you are going through.

It is so important to be aggressive with your treatments. You have every right to be upset that your sputum culture results were not given to you in a timely manner. I have mine done every 3 months and get my results when the final report comes in. I also have them faxed to me for my own records. As far as birth control...I do not take birth control...never did but I do follow my cycle through natural family planning so am aware of my fertility. And in regards to Pulmozyme vs HS well, I do both...they each serve a different purpose and I have found them both to be important in my health care routine. For x-rays I get a chest cat scan every two years and have a glucose tolerance test done yearly. I always go in for my check up with a list of questions and my doctor goes through each one to my satisfaction. We have an excellent relationship and you deserve one too with your doctor.

You certainly sound like an educated woman and if you feel your treatment has been substandard then my all means either try another doctor in center or try a new cf center all together. It sounds like you have nothing to lose and everything to gain.

Let us know how it goes...keep your questions coming so that we can help you with our experiences.
 

Jem

New member
First I want to welcome you to this forum. I am so sorry for what you are going through.

It is so important to be aggressive with your treatments. You have every right to be upset that your sputum culture results were not given to you in a timely manner. I have mine done every 3 months and get my results when the final report comes in. I also have them faxed to me for my own records. As far as birth control...I do not take birth control...never did but I do follow my cycle through natural family planning so am aware of my fertility. And in regards to Pulmozyme vs HS well, I do both...they each serve a different purpose and I have found them both to be important in my health care routine. For x-rays I get a chest cat scan every two years and have a glucose tolerance test done yearly. I always go in for my check up with a list of questions and my doctor goes through each one to my satisfaction. We have an excellent relationship and you deserve one too with your doctor.

You certainly sound like an educated woman and if you feel your treatment has been substandard then my all means either try another doctor in center or try a new cf center all together. It sounds like you have nothing to lose and everything to gain.

Let us know how it goes...keep your questions coming so that we can help you with our experiences.
 

Jem

New member
First I want to welcome you to this forum. I am so sorry for what you are going through.

It is so important to be aggressive with your treatments. You have every right to be upset that your sputum culture results were not given to you in a timely manner. I have mine done every 3 months and get my results when the final report comes in. I also have them faxed to me for my own records. As far as birth control...I do not take birth control...never did but I do follow my cycle through natural family planning so am aware of my fertility. And in regards to Pulmozyme vs HS well, I do both...they each serve a different purpose and I have found them both to be important in my health care routine. For x-rays I get a chest cat scan every two years and have a glucose tolerance test done yearly. I always go in for my check up with a list of questions and my doctor goes through each one to my satisfaction. We have an excellent relationship and you deserve one too with your doctor.

You certainly sound like an educated woman and if you feel your treatment has been substandard then my all means either try another doctor in center or try a new cf center all together. It sounds like you have nothing to lose and everything to gain.

Let us know how it goes...keep your questions coming so that we can help you with our experiences.
 

Jem

New member
First I want to welcome you to this forum. I am so sorry for what you are going through.

It is so important to be aggressive with your treatments. You have every right to be upset that your sputum culture results were not given to you in a timely manner. I have mine done every 3 months and get my results when the final report comes in. I also have them faxed to me for my own records. As far as birth control...I do not take birth control...never did but I do follow my cycle through natural family planning so am aware of my fertility. And in regards to Pulmozyme vs HS well, I do both...they each serve a different purpose and I have found them both to be important in my health care routine. For x-rays I get a chest cat scan every two years and have a glucose tolerance test done yearly. I always go in for my check up with a list of questions and my doctor goes through each one to my satisfaction. We have an excellent relationship and you deserve one too with your doctor.

You certainly sound like an educated woman and if you feel your treatment has been substandard then my all means either try another doctor in center or try a new cf center all together. It sounds like you have nothing to lose and everything to gain.

Let us know how it goes...keep your questions coming so that we can help you with our experiences.
 
Okay, where do I start? This site is probably going to me my saving grace for sanity.

First and foremost I just wanted to clarify, I don't think the doctor I see is bad, I don't think that he does not know his stuff, I don't feel he is not doing his job, and I think he may be great for most patients. I like his mannerisms most of the time he doesn't have a terrible bed side manner but he is just not what I need in a physician at this point in my life.

I understand and agree in the pediatric clinic we do what the doctor tells us because that is what we are supposed to do. We are sick, the doctor tells us how to get better (sometimes as children/teenager we are not as compliant as we should be) but for the most part the roles work, the patient either gets better or just doesn't get worse. Life is good, life goes on.

Yes, I want to be more involved in my treatment, I have fixed my non-compliance stupidity (Yes, I admit it, I was Stupid, I know now lets move on). I sometimes expect too much but when I am monitored closely all my life I want to be monitored closely for the rest of my life. If I am paying 125 dollars, plus copays and meds every paycheck just to be able to go see the doctor and ensure coverage for all test, I want more out of my visits than you seem to be doing well keep up the good work and I will see you in 3 months.

The reason I had to practically beg for DNASE was the doctor said your lungs are clear why do you want DNASE (let me see........to keep them that way, my bad) As far as the HTS it has not seem to do much for me, and the price, my insurance does not cover it so it is more expensive to do the saline than the DNASE. Also the only reasen I do the saline is because I wanted to do the DNASE twice a day to try to increase my lung function and the doctor told me no. I said I still wanted to despite his disagreement with me that it may improve my lung function and said if I wanted I could start the saline but that was only because I wanted to do two DNASE treatments.

I also want to thank everyone for their responses. I don't expect, nor do I want everyone who responds to me to totally agree with everything all the time. I am here to find answers to my thoughts, get advice on different ideas to look into, and the occasional maybe you are not 100% thinking rationally and maybe, but not necessarily, you are just reacting and not thinking
 
Okay, where do I start? This site is probably going to me my saving grace for sanity.

First and foremost I just wanted to clarify, I don't think the doctor I see is bad, I don't think that he does not know his stuff, I don't feel he is not doing his job, and I think he may be great for most patients. I like his mannerisms most of the time he doesn't have a terrible bed side manner but he is just not what I need in a physician at this point in my life.

I understand and agree in the pediatric clinic we do what the doctor tells us because that is what we are supposed to do. We are sick, the doctor tells us how to get better (sometimes as children/teenager we are not as compliant as we should be) but for the most part the roles work, the patient either gets better or just doesn't get worse. Life is good, life goes on.

Yes, I want to be more involved in my treatment, I have fixed my non-compliance stupidity (Yes, I admit it, I was Stupid, I know now lets move on). I sometimes expect too much but when I am monitored closely all my life I want to be monitored closely for the rest of my life. If I am paying 125 dollars, plus copays and meds every paycheck just to be able to go see the doctor and ensure coverage for all test, I want more out of my visits than you seem to be doing well keep up the good work and I will see you in 3 months.

The reason I had to practically beg for DNASE was the doctor said your lungs are clear why do you want DNASE (let me see........to keep them that way, my bad) As far as the HTS it has not seem to do much for me, and the price, my insurance does not cover it so it is more expensive to do the saline than the DNASE. Also the only reasen I do the saline is because I wanted to do the DNASE twice a day to try to increase my lung function and the doctor told me no. I said I still wanted to despite his disagreement with me that it may improve my lung function and said if I wanted I could start the saline but that was only because I wanted to do two DNASE treatments.

I also want to thank everyone for their responses. I don't expect, nor do I want everyone who responds to me to totally agree with everything all the time. I am here to find answers to my thoughts, get advice on different ideas to look into, and the occasional maybe you are not 100% thinking rationally and maybe, but not necessarily, you are just reacting and not thinking
 
Okay, where do I start? This site is probably going to me my saving grace for sanity.

First and foremost I just wanted to clarify, I don't think the doctor I see is bad, I don't think that he does not know his stuff, I don't feel he is not doing his job, and I think he may be great for most patients. I like his mannerisms most of the time he doesn't have a terrible bed side manner but he is just not what I need in a physician at this point in my life.

I understand and agree in the pediatric clinic we do what the doctor tells us because that is what we are supposed to do. We are sick, the doctor tells us how to get better (sometimes as children/teenager we are not as compliant as we should be) but for the most part the roles work, the patient either gets better or just doesn't get worse. Life is good, life goes on.

Yes, I want to be more involved in my treatment, I have fixed my non-compliance stupidity (Yes, I admit it, I was Stupid, I know now lets move on). I sometimes expect too much but when I am monitored closely all my life I want to be monitored closely for the rest of my life. If I am paying 125 dollars, plus copays and meds every paycheck just to be able to go see the doctor and ensure coverage for all test, I want more out of my visits than you seem to be doing well keep up the good work and I will see you in 3 months.

The reason I had to practically beg for DNASE was the doctor said your lungs are clear why do you want DNASE (let me see........to keep them that way, my bad) As far as the HTS it has not seem to do much for me, and the price, my insurance does not cover it so it is more expensive to do the saline than the DNASE. Also the only reasen I do the saline is because I wanted to do the DNASE twice a day to try to increase my lung function and the doctor told me no. I said I still wanted to despite his disagreement with me that it may improve my lung function and said if I wanted I could start the saline but that was only because I wanted to do two DNASE treatments.

I also want to thank everyone for their responses. I don't expect, nor do I want everyone who responds to me to totally agree with everything all the time. I am here to find answers to my thoughts, get advice on different ideas to look into, and the occasional maybe you are not 100% thinking rationally and maybe, but not necessarily, you are just reacting and not thinking
 
Okay, where do I start? This site is probably going to me my saving grace for sanity.

First and foremost I just wanted to clarify, I don't think the doctor I see is bad, I don't think that he does not know his stuff, I don't feel he is not doing his job, and I think he may be great for most patients. I like his mannerisms most of the time he doesn't have a terrible bed side manner but he is just not what I need in a physician at this point in my life.

I understand and agree in the pediatric clinic we do what the doctor tells us because that is what we are supposed to do. We are sick, the doctor tells us how to get better (sometimes as children/teenager we are not as compliant as we should be) but for the most part the roles work, the patient either gets better or just doesn't get worse. Life is good, life goes on.

Yes, I want to be more involved in my treatment, I have fixed my non-compliance stupidity (Yes, I admit it, I was Stupid, I know now lets move on). I sometimes expect too much but when I am monitored closely all my life I want to be monitored closely for the rest of my life. If I am paying 125 dollars, plus copays and meds every paycheck just to be able to go see the doctor and ensure coverage for all test, I want more out of my visits than you seem to be doing well keep up the good work and I will see you in 3 months.

The reason I had to practically beg for DNASE was the doctor said your lungs are clear why do you want DNASE (let me see........to keep them that way, my bad) As far as the HTS it has not seem to do much for me, and the price, my insurance does not cover it so it is more expensive to do the saline than the DNASE. Also the only reasen I do the saline is because I wanted to do the DNASE twice a day to try to increase my lung function and the doctor told me no. I said I still wanted to despite his disagreement with me that it may improve my lung function and said if I wanted I could start the saline but that was only because I wanted to do two DNASE treatments.

I also want to thank everyone for their responses. I don't expect, nor do I want everyone who responds to me to totally agree with everything all the time. I am here to find answers to my thoughts, get advice on different ideas to look into, and the occasional maybe you are not 100% thinking rationally and maybe, but not necessarily, you are just reacting and not thinking
 
Okay, where do I start? This site is probably going to me my saving grace for sanity.

First and foremost I just wanted to clarify, I don't think the doctor I see is bad, I don't think that he does not know his stuff, I don't feel he is not doing his job, and I think he may be great for most patients. I like his mannerisms most of the time he doesn't have a terrible bed side manner but he is just not what I need in a physician at this point in my life.

I understand and agree in the pediatric clinic we do what the doctor tells us because that is what we are supposed to do. We are sick, the doctor tells us how to get better (sometimes as children/teenager we are not as compliant as we should be) but for the most part the roles work, the patient either gets better or just doesn't get worse. Life is good, life goes on.

Yes, I want to be more involved in my treatment, I have fixed my non-compliance stupidity (Yes, I admit it, I was Stupid, I know now lets move on). I sometimes expect too much but when I am monitored closely all my life I want to be monitored closely for the rest of my life. If I am paying 125 dollars, plus copays and meds every paycheck just to be able to go see the doctor and ensure coverage for all test, I want more out of my visits than you seem to be doing well keep up the good work and I will see you in 3 months.

The reason I had to practically beg for DNASE was the doctor said your lungs are clear why do you want DNASE (let me see........to keep them that way, my bad) As far as the HTS it has not seem to do much for me, and the price, my insurance does not cover it so it is more expensive to do the saline than the DNASE. Also the only reasen I do the saline is because I wanted to do the DNASE twice a day to try to increase my lung function and the doctor told me no. I said I still wanted to despite his disagreement with me that it may improve my lung function and said if I wanted I could start the saline but that was only because I wanted to do two DNASE treatments.

I also want to thank everyone for their responses. I don't expect, nor do I want everyone who responds to me to totally agree with everything all the time. I am here to find answers to my thoughts, get advice on different ideas to look into, and the occasional maybe you are not 100% thinking rationally and maybe, but not necessarily, you are just reacting and not thinking
 
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