quality care

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Skye

New member
I am not sure how to put this so bare with me. I have not been in the CF clinic world for very long. I have only recently....the last 5 years....gone to an accredited center. My early experience was fabulous with a doctor who listened and was very much into proactive care. He is gone now though and I am finding that I am getting lost in the system. I think his care was unusual and I really didn't know that until he left.

I have what might be considered a "crappy" FEV1; BUT, I tend to stay well and I tend to stay on top of things and get a tune up before it turns into a problem. I ask a LOT of questions and I want the best and latest research. I go to a very large center and I also have a small local center. Lately though it seems I get shuffled in and out. There are just SO many critical care issues with CF that someone like me doesn't get any attention. I am good at taking care of myself and they just kind of have a "hand's off" approach with me. I UNDERSTAND it is the winter season and there are a lot of CFers hurting out there. I just wonder where someone like me fits in the system and if others feel this way. I just want to stay as well as I was able to be with my other doc because he was so open to listening to me and changing when I needed to change things.

Sometimes I think the Denmark way of doing things is kind of awesome......fax PFT's instead of going to clinic. That kind of revolutionary thinking. I dunno. I'm just feeling vulnerable and lost in the system right now.
 
S

Skye

New member
I am not sure how to put this so bare with me. I have not been in the CF clinic world for very long. I have only recently....the last 5 years....gone to an accredited center. My early experience was fabulous with a doctor who listened and was very much into proactive care. He is gone now though and I am finding that I am getting lost in the system. I think his care was unusual and I really didn't know that until he left.

I have what might be considered a "crappy" FEV1; BUT, I tend to stay well and I tend to stay on top of things and get a tune up before it turns into a problem. I ask a LOT of questions and I want the best and latest research. I go to a very large center and I also have a small local center. Lately though it seems I get shuffled in and out. There are just SO many critical care issues with CF that someone like me doesn't get any attention. I am good at taking care of myself and they just kind of have a "hand's off" approach with me. I UNDERSTAND it is the winter season and there are a lot of CFers hurting out there. I just wonder where someone like me fits in the system and if others feel this way. I just want to stay as well as I was able to be with my other doc because he was so open to listening to me and changing when I needed to change things.

Sometimes I think the Denmark way of doing things is kind of awesome......fax PFT's instead of going to clinic. That kind of revolutionary thinking. I dunno. I'm just feeling vulnerable and lost in the system right now.
 
S

Skye

New member
I am not sure how to put this so bare with me. I have not been in the CF clinic world for very long. I have only recently....the last 5 years....gone to an accredited center. My early experience was fabulous with a doctor who listened and was very much into proactive care. He is gone now though and I am finding that I am getting lost in the system. I think his care was unusual and I really didn't know that until he left.

I have what might be considered a "crappy" FEV1; BUT, I tend to stay well and I tend to stay on top of things and get a tune up before it turns into a problem. I ask a LOT of questions and I want the best and latest research. I go to a very large center and I also have a small local center. Lately though it seems I get shuffled in and out. There are just SO many critical care issues with CF that someone like me doesn't get any attention. I am good at taking care of myself and they just kind of have a "hand's off" approach with me. I UNDERSTAND it is the winter season and there are a lot of CFers hurting out there. I just wonder where someone like me fits in the system and if others feel this way. I just want to stay as well as I was able to be with my other doc because he was so open to listening to me and changing when I needed to change things.

Sometimes I think the Denmark way of doing things is kind of awesome......fax PFT's instead of going to clinic. That kind of revolutionary thinking. I dunno. I'm just feeling vulnerable and lost in the system right now.
 
S

Skye

New member
I am not sure how to put this so bare with me. I have not been in the CF clinic world for very long. I have only recently....the last 5 years....gone to an accredited center. My early experience was fabulous with a doctor who listened and was very much into proactive care. He is gone now though and I am finding that I am getting lost in the system. I think his care was unusual and I really didn't know that until he left.

I have what might be considered a "crappy" FEV1; BUT, I tend to stay well and I tend to stay on top of things and get a tune up before it turns into a problem. I ask a LOT of questions and I want the best and latest research. I go to a very large center and I also have a small local center. Lately though it seems I get shuffled in and out. There are just SO many critical care issues with CF that someone like me doesn't get any attention. I am good at taking care of myself and they just kind of have a "hand's off" approach with me. I UNDERSTAND it is the winter season and there are a lot of CFers hurting out there. I just wonder where someone like me fits in the system and if others feel this way. I just want to stay as well as I was able to be with my other doc because he was so open to listening to me and changing when I needed to change things.

Sometimes I think the Denmark way of doing things is kind of awesome......fax PFT's instead of going to clinic. That kind of revolutionary thinking. I dunno. I'm just feeling vulnerable and lost in the system right now.
 
S

Skye

New member
I am not sure how to put this so bare with me. I have not been in the CF clinic world for very long. I have only recently....the last 5 years....gone to an accredited center. My early experience was fabulous with a doctor who listened and was very much into proactive care. He is gone now though and I am finding that I am getting lost in the system. I think his care was unusual and I really didn't know that until he left.
<br />
<br />I have what might be considered a "crappy" FEV1; BUT, I tend to stay well and I tend to stay on top of things and get a tune up before it turns into a problem. I ask a LOT of questions and I want the best and latest research. I go to a very large center and I also have a small local center. Lately though it seems I get shuffled in and out. There are just SO many critical care issues with CF that someone like me doesn't get any attention. I am good at taking care of myself and they just kind of have a "hand's off" approach with me. I UNDERSTAND it is the winter season and there are a lot of CFers hurting out there. I just wonder where someone like me fits in the system and if others feel this way. I just want to stay as well as I was able to be with my other doc because he was so open to listening to me and changing when I needed to change things.
<br />
<br />Sometimes I think the Denmark way of doing things is kind of awesome......fax PFT's instead of going to clinic. That kind of revolutionary thinking. I dunno. I'm just feeling vulnerable and lost in the system right now.
 
J

JazzysMom

New member
I think you need to state exactly what you said to us to the clinic.

Yes we all understand its a rough time of year for CF clinics especially with H1N1 etc, but the idea is to keep you healthy.
 
J

JazzysMom

New member
I think you need to state exactly what you said to us to the clinic.

Yes we all understand its a rough time of year for CF clinics especially with H1N1 etc, but the idea is to keep you healthy.
 
J

JazzysMom

New member
I think you need to state exactly what you said to us to the clinic.

Yes we all understand its a rough time of year for CF clinics especially with H1N1 etc, but the idea is to keep you healthy.
 
J

JazzysMom

New member
I think you need to state exactly what you said to us to the clinic.

Yes we all understand its a rough time of year for CF clinics especially with H1N1 etc, but the idea is to keep you healthy.
 
J

JazzysMom

New member
I think you need to state exactly what you said to us to the clinic.
<br />
<br />Yes we all understand its a rough time of year for CF clinics especially with H1N1 etc, but the idea is to keep you healthy.
 
C

Cerulean

New member
I feel the same way as you sometimes. Like I am just a number. But it seems to be a trickle up effect so to speak. By this I mean the CNAs, nurses, social workers tend to be wonderful. Closer to the high end (the doctors), tend to be less comforting.

I understand that doctors have a HUGE patient load and just don't have the same type of caring that the underlings have. But they still do care in their own way. That helps me justify what is going on.
 
C

Cerulean

New member
I feel the same way as you sometimes. Like I am just a number. But it seems to be a trickle up effect so to speak. By this I mean the CNAs, nurses, social workers tend to be wonderful. Closer to the high end (the doctors), tend to be less comforting.

I understand that doctors have a HUGE patient load and just don't have the same type of caring that the underlings have. But they still do care in their own way. That helps me justify what is going on.
 
C

Cerulean

New member
I feel the same way as you sometimes. Like I am just a number. But it seems to be a trickle up effect so to speak. By this I mean the CNAs, nurses, social workers tend to be wonderful. Closer to the high end (the doctors), tend to be less comforting.

I understand that doctors have a HUGE patient load and just don't have the same type of caring that the underlings have. But they still do care in their own way. That helps me justify what is going on.
 
C

Cerulean

New member
I feel the same way as you sometimes. Like I am just a number. But it seems to be a trickle up effect so to speak. By this I mean the CNAs, nurses, social workers tend to be wonderful. Closer to the high end (the doctors), tend to be less comforting.

I understand that doctors have a HUGE patient load and just don't have the same type of caring that the underlings have. But they still do care in their own way. That helps me justify what is going on.
 
C

Cerulean

New member
I feel the same way as you sometimes. Like I am just a number. But it seems to be a trickle up effect so to speak. By this I mean the CNAs, nurses, social workers tend to be wonderful. Closer to the high end (the doctors), tend to be less comforting.
<br />
<br />I understand that doctors have a HUGE patient load and just don't have the same type of caring that the underlings have. But they still do care in their own way. That helps me justify what is going on.
 
B

beleache

New member
Hey Karen,

I agree completely with Melissa.... I was going to say Drs. are human (most are anyways lol) and maybe you should discuss your feelings with them.. Do you have a social worker ?? I would start there if you do..


Take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hey Karen,

I agree completely with Melissa.... I was going to say Drs. are human (most are anyways lol) and maybe you should discuss your feelings with them.. Do you have a social worker ?? I would start there if you do..


Take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hey Karen,

I agree completely with Melissa.... I was going to say Drs. are human (most are anyways lol) and maybe you should discuss your feelings with them.. Do you have a social worker ?? I would start there if you do..


Take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hey Karen,

I agree completely with Melissa.... I was going to say Drs. are human (most are anyways lol) and maybe you should discuss your feelings with them.. Do you have a social worker ?? I would start there if you do..


Take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hey Karen,
<br />
<br /> I agree completely with Melissa.... I was going to say Drs. are human (most are anyways lol) and maybe you should discuss your feelings with them.. Do you have a social worker ?? I would start there if you do..
<br />
<br />
<br /> Take care <img src="i/expressions/heart.gif" border="0"> joni
 
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