B
brewz2
Guest
I never thought about taking a laptop in - what a good idea! Hopefully our next clinic visit will be much less exhausting for us! <img src="i/expressions/face-icon-small-smile.gif" border="0">
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WHAT DO YOU LIKE ABOUT YOUR CLINIC?
- Thread starter MOME2RT
- Start date
B
brewz2
Guest
I never thought about taking a laptop in - what a good idea! Hopefully our next clinic visit will be much less exhausting for us! <img src="i/expressions/face-icon-small-smile.gif" border="0">
B
brewz2
Guest
I never thought about taking a laptop in - what a good idea! Hopefully our next clinic visit will be much less exhausting for us! <img src="i/expressions/face-icon-small-smile.gif" border="0">
B
brewz2
Guest
I never thought about taking a laptop in - what a good idea! Hopefully our next clinic visit will be much less exhausting for us! <img src="i/expressions/face-icon-small-smile.gif" border="0">
B
brewz2
Guest
I never thought about taking a laptop in - what a good idea! Hopefully our next clinic visit will be much less exhausting for us! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thought of something else I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF. Hmmm, I'm an RN maybe this would be a good career change<img src="i/expressions/face-icon-small-wink.gif" border="0"> joke.
Thought of something else I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF. Hmmm, I'm an RN maybe this would be a good career change<img src="i/expressions/face-icon-small-wink.gif" border="0"> joke.
Thought of something else I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF. Hmmm, I'm an RN maybe this would be a good career change<img src="i/expressions/face-icon-small-wink.gif" border="0"> joke.
Thought of something else I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF. Hmmm, I'm an RN maybe this would be a good career change<img src="i/expressions/face-icon-small-wink.gif" border="0"> joke.
Thought of something else I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF. Hmmm, I'm an RN maybe this would be a good career change<img src="i/expressions/face-icon-small-wink.gif" border="0"> joke.
I got to Johns Hopkins Adult CF in Baltimore. I've never met another CF patient - though I suspect some in the waiting areas might have had CF (but I didn't have enough nerve to ask). <img src="i/expressions/face-icon-small-smile.gif" border="0"> I really like the team approach they use. There are (at least) 3 adult CF doctors who focus entirely on adults. All are involved in research and hence have a lower patient load so they have time for their research. I think this is very beneficial as it keeps them up on the latest things going on, they're active in the research community, and with fewer patients they get to know us much better.
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
I got to Johns Hopkins Adult CF in Baltimore. I've never met another CF patient - though I suspect some in the waiting areas might have had CF (but I didn't have enough nerve to ask). <img src="i/expressions/face-icon-small-smile.gif" border="0"> I really like the team approach they use. There are (at least) 3 adult CF doctors who focus entirely on adults. All are involved in research and hence have a lower patient load so they have time for their research. I think this is very beneficial as it keeps them up on the latest things going on, they're active in the research community, and with fewer patients they get to know us much better.
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
I got to Johns Hopkins Adult CF in Baltimore. I've never met another CF patient - though I suspect some in the waiting areas might have had CF (but I didn't have enough nerve to ask). <img src="i/expressions/face-icon-small-smile.gif" border="0"> I really like the team approach they use. There are (at least) 3 adult CF doctors who focus entirely on adults. All are involved in research and hence have a lower patient load so they have time for their research. I think this is very beneficial as it keeps them up on the latest things going on, they're active in the research community, and with fewer patients they get to know us much better.
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
I got to Johns Hopkins Adult CF in Baltimore. I've never met another CF patient - though I suspect some in the waiting areas might have had CF (but I didn't have enough nerve to ask). <img src="i/expressions/face-icon-small-smile.gif" border="0"> I really like the team approach they use. There are (at least) 3 adult CF doctors who focus entirely on adults. All are involved in research and hence have a lower patient load so they have time for their research. I think this is very beneficial as it keeps them up on the latest things going on, they're active in the research community, and with fewer patients they get to know us much better.
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
The top 4 things about JH that I *LOVE* are:
1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
~Juliet
I got to Johns Hopkins Adult CF in Baltimore. I've never met another CF patient - though I suspect some in the waiting areas might have had CF (but I didn't have enough nerve to ask). <img src="i/expressions/face-icon-small-smile.gif" border="0"> I really like the team approach they use. There are (at least) 3 adult CF doctors who focus entirely on adults. All are involved in research and hence have a lower patient load so they have time for their research. I think this is very beneficial as it keeps them up on the latest things going on, they're active in the research community, and with fewer patients they get to know us much better.
<br />
<br />The top 4 things about JH that I *LOVE* are:
<br />
<br />1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
<br />
<br />2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
<br />
<br />3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
<br />
<br />4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
<br />
<br />~Juliet
<br />
<br />The top 4 things about JH that I *LOVE* are:
<br />
<br />1) INTERACTIVE care. They discuss everything with me. They take the time to explain the rationale behind their decisions, from proactive care, to what meds to use and so forth. They have never 'blown off' my questions or not been willing to explain the *why*. They listen. Not once have I been given a 'well it's too complicated to explain...' answer. They are also very willing to work closely with my regular doctor (ie for allergy treatment, for getting testing done locally) to get me the best care.
<br />
<br />2) ACCESSIBILITY between visits. The nurse practitioner on the team, nurses, nutritionist, respiratory therapist and doctors return calls within an hour or two, often within 15 minutes. They all answer e-mails in a timely manner. And they don't make me feel stupid for asking questions or raising concerns I might have. I've been known to send lists of questions to my doctor with literally a dozen specific questions not only about specifics of my care, but general CF and genetic questions. They have always provided me with a reply. More often than not they take the initiative to call me to follow up on concerns and treatments I might have had, to see how I'm doing, even over the weekend!
<br />
<br />3) PROACTIVE approach to health and preventative treatment. Even though I was only diagnosed earlier this year (a MAC infection accompanied by rapidly declining lung function led to my DX) I feel that the treatments they have me doing have helped improve my breathing and health. I'm still battling some recurring infections, but I feel the regimen I'm on now is the most appropriate aggressive treatment that we should be taking. They work with me to make sure it can realistically fit into my hectic schedule, to the point where they've researched alternative travel-friendly equipment and work-friendly treatment options. They don't just blindly dump more things on the daily CF to-do list with no thoughts as to the time-implications.
<br />
<br />4) KNOW THEIR LIMITS. As an adult CFer I have some issues that might or might not be CF related (GI and sinus issues mostly). The CF docs recognize where the limits of their knowledge core lies and they aren't afraid to admit to them. As such they've provided referrals to other specialists (who are familiar with the nuances of CF) when I have issues which are beyond the typical CF gastrointestinal issues. They are also very willing to communicate and work with these other doctors to make sure my care is compatible and consistent (as well as proactive) with the rest of my CF regimen / meds / etc... That relieves much of the burden on me having to hound the other docs to make sure they talk with my CF docs. They are also proactive in keeping the lines of communication open to other doctors involved in other aspects of my care. I think this is very important as we all know just how broad a disease CF can be.
<br />
<br />~Juliet
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote></div>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote></div>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote></div>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote></div>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote></div>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote></div>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote>
I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
I also like the tvs in each room....
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
<br />
<br /> I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote>
<br />
<br />I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
<br />
<br />I also like the tvs in each room....
<br />
<br /> I WISH they did. I wish they used e-mail more, especially when my daughter has somehting going on or in the beginning when I had about 15,000 questions. Instead of calling and waiting forever for someone to call me back wouldn't it be more conveniant to have an e-mail line where a nurse or doc checks it a few times a day and answers your health care questions on CF.</end quote>
<br />
<br />I agree with this one too. This was on my list to bring to the table to add to our clinic. Although they do have a phone triage, I would like this feature added as well!
<br />
<br />I also like the tvs in each room....