My Story-New Member

NYCLawGirl

New member
Hi there. I go to the center at Columbia Presbyterian and love it. I'm not sure what you're looking for specifically in a clinic, but I have been really happy with the level of care I've received there and especially with the personal relationship I have with my doctor. One thing that is different from many centers I've been to (and I've moved around the country, so I've been to several) is that the Columbia group doesn't hold "clinic days." It's really just individual appointments with the CF doctor there, and this makes it more flexible to individual schedules in my experience. I don't know how they work it for people who commute to the center, but the rest of us are generally not seen by a "team" when we come in. I pretty much blow PFTs and meet with my doctor - very rarely is anyone else involved in the appt at all. Sessions with additional team members (nutritionist, social worker, etc) are scheduled in advance as needed. At least in my experience, no RN has ever been involved in any significant manner.

Anyway, that's my only observation as to something "unique" about my clinic. I do have to add that I've never had a problem with them not helping me no matter what my situation was at the time, and they definitely stay on top of CFF protocol when it comes to their patients. Mostly I just love my doctor and can't say enough good things about her, so that definitely adds to my endorsement of the center.
 

NYCLawGirl

New member
Hi there. I go to the center at Columbia Presbyterian and love it. I'm not sure what you're looking for specifically in a clinic, but I have been really happy with the level of care I've received there and especially with the personal relationship I have with my doctor. One thing that is different from many centers I've been to (and I've moved around the country, so I've been to several) is that the Columbia group doesn't hold "clinic days." It's really just individual appointments with the CF doctor there, and this makes it more flexible to individual schedules in my experience. I don't know how they work it for people who commute to the center, but the rest of us are generally not seen by a "team" when we come in. I pretty much blow PFTs and meet with my doctor - very rarely is anyone else involved in the appt at all. Sessions with additional team members (nutritionist, social worker, etc) are scheduled in advance as needed. At least in my experience, no RN has ever been involved in any significant manner.

Anyway, that's my only observation as to something "unique" about my clinic. I do have to add that I've never had a problem with them not helping me no matter what my situation was at the time, and they definitely stay on top of CFF protocol when it comes to their patients. Mostly I just love my doctor and can't say enough good things about her, so that definitely adds to my endorsement of the center.
 

NYCLawGirl

New member
Hi there. I go to the center at Columbia Presbyterian and love it. I'm not sure what you're looking for specifically in a clinic, but I have been really happy with the level of care I've received there and especially with the personal relationship I have with my doctor. One thing that is different from many centers I've been to (and I've moved around the country, so I've been to several) is that the Columbia group doesn't hold "clinic days." It's really just individual appointments with the CF doctor there, and this makes it more flexible to individual schedules in my experience. I don't know how they work it for people who commute to the center, but the rest of us are generally not seen by a "team" when we come in. I pretty much blow PFTs and meet with my doctor - very rarely is anyone else involved in the appt at all. Sessions with additional team members (nutritionist, social worker, etc) are scheduled in advance as needed. At least in my experience, no RN has ever been involved in any significant manner.

Anyway, that's my only observation as to something "unique" about my clinic. I do have to add that I've never had a problem with them not helping me no matter what my situation was at the time, and they definitely stay on top of CFF protocol when it comes to their patients. Mostly I just love my doctor and can't say enough good things about her, so that definitely adds to my endorsement of the center.
 

NYCLawGirl

New member
Hi there. I go to the center at Columbia Presbyterian and love it. I'm not sure what you're looking for specifically in a clinic, but I have been really happy with the level of care I've received there and especially with the personal relationship I have with my doctor. One thing that is different from many centers I've been to (and I've moved around the country, so I've been to several) is that the Columbia group doesn't hold "clinic days." It's really just individual appointments with the CF doctor there, and this makes it more flexible to individual schedules in my experience. I don't know how they work it for people who commute to the center, but the rest of us are generally not seen by a "team" when we come in. I pretty much blow PFTs and meet with my doctor - very rarely is anyone else involved in the appt at all. Sessions with additional team members (nutritionist, social worker, etc) are scheduled in advance as needed. At least in my experience, no RN has ever been involved in any significant manner.

Anyway, that's my only observation as to something "unique" about my clinic. I do have to add that I've never had a problem with them not helping me no matter what my situation was at the time, and they definitely stay on top of CFF protocol when it comes to their patients. Mostly I just love my doctor and can't say enough good things about her, so that definitely adds to my endorsement of the center.
 

NYCLawGirl

New member
Hi there. I go to the center at Columbia Presbyterian and love it. I'm not sure what you're looking for specifically in a clinic, but I have been really happy with the level of care I've received there and especially with the personal relationship I have with my doctor. One thing that is different from many centers I've been to (and I've moved around the country, so I've been to several) is that the Columbia group doesn't hold "clinic days." It's really just individual appointments with the CF doctor there, and this makes it more flexible to individual schedules in my experience. I don't know how they work it for people who commute to the center, but the rest of us are generally not seen by a "team" when we come in. I pretty much blow PFTs and meet with my doctor - very rarely is anyone else involved in the appt at all. Sessions with additional team members (nutritionist, social worker, etc) are scheduled in advance as needed. At least in my experience, no RN has ever been involved in any significant manner.
<br />
<br />Anyway, that's my only observation as to something "unique" about my clinic. I do have to add that I've never had a problem with them not helping me no matter what my situation was at the time, and they definitely stay on top of CFF protocol when it comes to their patients. Mostly I just love my doctor and can't say enough good things about her, so that definitely adds to my endorsement of the center.
 

kayleesgrandma

New member
Hello and welcome! I live in Iowa, so am no help in the clinic area, but wanted to extend a welcoming hand, and let you know I am glad to see you have joined us! I look forward to getting to know you<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

kayleesgrandma

New member
Hello and welcome! I live in Iowa, so am no help in the clinic area, but wanted to extend a welcoming hand, and let you know I am glad to see you have joined us! I look forward to getting to know you<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

kayleesgrandma

New member
Hello and welcome! I live in Iowa, so am no help in the clinic area, but wanted to extend a welcoming hand, and let you know I am glad to see you have joined us! I look forward to getting to know you<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

kayleesgrandma

New member
Hello and welcome! I live in Iowa, so am no help in the clinic area, but wanted to extend a welcoming hand, and let you know I am glad to see you have joined us! I look forward to getting to know you<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

kayleesgrandma

New member
Hello and welcome! I live in Iowa, so am no help in the clinic area, but wanted to extend a welcoming hand, and let you know I am glad to see you have joined us! I look forward to getting to know you<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

MicheleGazelle

New member
Hi and welcome. I also have a diagnosis of "atypical CF", as does my oldest son. We had some hassles with our insurance not wanting to pay for additional testing and with doctors not wanting to accept my son's diagnosis (because he was "too healthy" to have CF). I would learn stuff elsewhere and then advocate, advocate, advocate every time one of us had clinic. Sorry I can't be of more help.

Good luck with this.
 

MicheleGazelle

New member
Hi and welcome. I also have a diagnosis of "atypical CF", as does my oldest son. We had some hassles with our insurance not wanting to pay for additional testing and with doctors not wanting to accept my son's diagnosis (because he was "too healthy" to have CF). I would learn stuff elsewhere and then advocate, advocate, advocate every time one of us had clinic. Sorry I can't be of more help.

Good luck with this.
 

MicheleGazelle

New member
Hi and welcome. I also have a diagnosis of "atypical CF", as does my oldest son. We had some hassles with our insurance not wanting to pay for additional testing and with doctors not wanting to accept my son's diagnosis (because he was "too healthy" to have CF). I would learn stuff elsewhere and then advocate, advocate, advocate every time one of us had clinic. Sorry I can't be of more help.

Good luck with this.
 

MicheleGazelle

New member
Hi and welcome. I also have a diagnosis of "atypical CF", as does my oldest son. We had some hassles with our insurance not wanting to pay for additional testing and with doctors not wanting to accept my son's diagnosis (because he was "too healthy" to have CF). I would learn stuff elsewhere and then advocate, advocate, advocate every time one of us had clinic. Sorry I can't be of more help.

Good luck with this.
 

MicheleGazelle

New member
Hi and welcome. I also have a diagnosis of "atypical CF", as does my oldest son. We had some hassles with our insurance not wanting to pay for additional testing and with doctors not wanting to accept my son's diagnosis (because he was "too healthy" to have CF). I would learn stuff elsewhere and then advocate, advocate, advocate every time one of us had clinic. Sorry I can't be of more help.
<br />
<br />Good luck with this.
 
U

uwrong1053

Guest
Hi and welcome

I go to Long Island College Hospital the Director of the CF center is Robert Giusti. The # is 718 780 1025. They are really good and I have been seeing him sine I was 11 or 12
 
U

uwrong1053

Guest
Hi and welcome

I go to Long Island College Hospital the Director of the CF center is Robert Giusti. The # is 718 780 1025. They are really good and I have been seeing him sine I was 11 or 12
 
U

uwrong1053

Guest
Hi and welcome

I go to Long Island College Hospital the Director of the CF center is Robert Giusti. The # is 718 780 1025. They are really good and I have been seeing him sine I was 11 or 12
 
U

uwrong1053

Guest
Hi and welcome

I go to Long Island College Hospital the Director of the CF center is Robert Giusti. The # is 718 780 1025. They are really good and I have been seeing him sine I was 11 or 12
 
U

uwrong1053

Guest
Hi and welcome
<br />
<br />I go to Long Island College Hospital the Director of the CF center is Robert Giusti. The # is 718 780 1025. They are really good and I have been seeing him sine I was 11 or 12
 
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