Did you find out through your medical records?

CaliSally

New member
Have you thought about asking them WHY they haven't told you? I'm just curious what their excuse would be.

I agree with Khristy and Amy - they are so busy they can't see straight - that's a recipe for crap like this. Are you going to a specialist at the same location or somewhere else?

I wasn't aware of what Amy said - that he stopped seeing other non-CF patients. That's a start. Additionally, he needs a helper. However, too many cooks spoil the broth as they say - that may come with it's problems too - as in no or forgetful communication. ugh!

I hope you get some good answers and insight - keep us posted.

<img src="i/expressions/heart.gif" border="0">
 

CaliSally

New member
Have you thought about asking them WHY they haven't told you? I'm just curious what their excuse would be.

I agree with Khristy and Amy - they are so busy they can't see straight - that's a recipe for crap like this. Are you going to a specialist at the same location or somewhere else?

I wasn't aware of what Amy said - that he stopped seeing other non-CF patients. That's a start. Additionally, he needs a helper. However, too many cooks spoil the broth as they say - that may come with it's problems too - as in no or forgetful communication. ugh!

I hope you get some good answers and insight - keep us posted.

<img src="i/expressions/heart.gif" border="0">
 

CaliSally

New member
Have you thought about asking them WHY they haven't told you? I'm just curious what their excuse would be.

I agree with Khristy and Amy - they are so busy they can't see straight - that's a recipe for crap like this. Are you going to a specialist at the same location or somewhere else?

I wasn't aware of what Amy said - that he stopped seeing other non-CF patients. That's a start. Additionally, he needs a helper. However, too many cooks spoil the broth as they say - that may come with it's problems too - as in no or forgetful communication. ugh!

I hope you get some good answers and insight - keep us posted.

<img src="i/expressions/heart.gif" border="0">
 

CaliSally

New member
Have you thought about asking them WHY they haven't told you? I'm just curious what their excuse would be.

I agree with Khristy and Amy - they are so busy they can't see straight - that's a recipe for crap like this. Are you going to a specialist at the same location or somewhere else?

I wasn't aware of what Amy said - that he stopped seeing other non-CF patients. That's a start. Additionally, he needs a helper. However, too many cooks spoil the broth as they say - that may come with it's problems too - as in no or forgetful communication. ugh!

I hope you get some good answers and insight - keep us posted.

<img src="i/expressions/heart.gif" border="0">
 

CaliSally

New member
Have you thought about asking them WHY they haven't told you? I'm just curious what their excuse would be.

I agree with Khristy and Amy - they are so busy they can't see straight - that's a recipe for crap like this. Are you going to a specialist at the same location or somewhere else?

I wasn't aware of what Amy said - that he stopped seeing other non-CF patients. That's a start. Additionally, he needs a helper. However, too many cooks spoil the broth as they say - that may come with it's problems too - as in no or forgetful communication. ugh!

I hope you get some good answers and insight - keep us posted.

<img src="i/expressions/heart.gif" border="0">
 

bittyhorse23

New member
This sort of happened with me...I think. back in 2003 I moved to a new state (VERY briefly) so I requested my records to take with me. When I came back from my "move" I looked over my records and found somethings which surprised me. I had cultured Staph my first hospitalization. granted I was 18 and might not remember or my mom may have been told. I found out lots of stuff about myself. I also found out my mutations and some other things I had never known before. But now I just ask.

I think sometimes they may not think about informing you if they don't think it is necessary. Maybe so they don't bog you down with details that are medically related (wow I don't think that made sense sorry). Now granted I think a partially collapsed lobe is very important and would be PISSED if I didn't hear about it. I would ask them why they didn't tell you.

Sorry this happened!!!
 

bittyhorse23

New member
This sort of happened with me...I think. back in 2003 I moved to a new state (VERY briefly) so I requested my records to take with me. When I came back from my "move" I looked over my records and found somethings which surprised me. I had cultured Staph my first hospitalization. granted I was 18 and might not remember or my mom may have been told. I found out lots of stuff about myself. I also found out my mutations and some other things I had never known before. But now I just ask.

I think sometimes they may not think about informing you if they don't think it is necessary. Maybe so they don't bog you down with details that are medically related (wow I don't think that made sense sorry). Now granted I think a partially collapsed lobe is very important and would be PISSED if I didn't hear about it. I would ask them why they didn't tell you.

Sorry this happened!!!
 

bittyhorse23

New member
This sort of happened with me...I think. back in 2003 I moved to a new state (VERY briefly) so I requested my records to take with me. When I came back from my "move" I looked over my records and found somethings which surprised me. I had cultured Staph my first hospitalization. granted I was 18 and might not remember or my mom may have been told. I found out lots of stuff about myself. I also found out my mutations and some other things I had never known before. But now I just ask.

I think sometimes they may not think about informing you if they don't think it is necessary. Maybe so they don't bog you down with details that are medically related (wow I don't think that made sense sorry). Now granted I think a partially collapsed lobe is very important and would be PISSED if I didn't hear about it. I would ask them why they didn't tell you.

Sorry this happened!!!
 

bittyhorse23

New member
This sort of happened with me...I think. back in 2003 I moved to a new state (VERY briefly) so I requested my records to take with me. When I came back from my "move" I looked over my records and found somethings which surprised me. I had cultured Staph my first hospitalization. granted I was 18 and might not remember or my mom may have been told. I found out lots of stuff about myself. I also found out my mutations and some other things I had never known before. But now I just ask.

I think sometimes they may not think about informing you if they don't think it is necessary. Maybe so they don't bog you down with details that are medically related (wow I don't think that made sense sorry). Now granted I think a partially collapsed lobe is very important and would be PISSED if I didn't hear about it. I would ask them why they didn't tell you.

Sorry this happened!!!
 

bittyhorse23

New member
This sort of happened with me...I think. back in 2003 I moved to a new state (VERY briefly) so I requested my records to take with me. When I came back from my "move" I looked over my records and found somethings which surprised me. I had cultured Staph my first hospitalization. granted I was 18 and might not remember or my mom may have been told. I found out lots of stuff about myself. I also found out my mutations and some other things I had never known before. But now I just ask.

I think sometimes they may not think about informing you if they don't think it is necessary. Maybe so they don't bog you down with details that are medically related (wow I don't think that made sense sorry). Now granted I think a partially collapsed lobe is very important and would be PISSED if I didn't hear about it. I would ask them why they didn't tell you.

Sorry this happened!!!
 

NoExcuses

New member
Not to defend the clinic, but it's difficult for any clinic now-a-days to make ends meet.

90% of patients have GHPP and they don't pay very much. It's hard for them to find other docs who are willing to deal with a difficult disease for not much pay.....

It's a tough situation.... but still not OK in my opinion....
 

NoExcuses

New member
Not to defend the clinic, but it's difficult for any clinic now-a-days to make ends meet.

90% of patients have GHPP and they don't pay very much. It's hard for them to find other docs who are willing to deal with a difficult disease for not much pay.....

It's a tough situation.... but still not OK in my opinion....
 

NoExcuses

New member
Not to defend the clinic, but it's difficult for any clinic now-a-days to make ends meet.

90% of patients have GHPP and they don't pay very much. It's hard for them to find other docs who are willing to deal with a difficult disease for not much pay.....

It's a tough situation.... but still not OK in my opinion....
 

NoExcuses

New member
Not to defend the clinic, but it's difficult for any clinic now-a-days to make ends meet.

90% of patients have GHPP and they don't pay very much. It's hard for them to find other docs who are willing to deal with a difficult disease for not much pay.....

It's a tough situation.... but still not OK in my opinion....
 

NoExcuses

New member
Not to defend the clinic, but it's difficult for any clinic now-a-days to make ends meet.

90% of patients have GHPP and they don't pay very much. It's hard for them to find other docs who are willing to deal with a difficult disease for not much pay.....

It's a tough situation.... but still not OK in my opinion....
 

mom2lillian

New member
I had this happen before I was diagnosed a doctor *forgot* to call back and tell me I had mono which resulted in me walking around getting alot worse to the point of walking pneumonia among others.

Now I <u>always </u>have my nurse call and tell me results of my tests, all of them vitamin levels, cultures etc, if she doesnt then I email her askign for them, I also started asking for copies PFT report at the appointment. They have tried the 'if we dont call its ok' routine but that is a NO GO for me, they are too bsuy I cant guarantee they didnt just overlook me so they will call me even just to say all vitamin levels looked good <img src="i/expressions/face-icon-small-happy.gif" border="0">, yes I'm a PITA!

I like ratatosk's idea of getting all the records!
 

mom2lillian

New member
I had this happen before I was diagnosed a doctor *forgot* to call back and tell me I had mono which resulted in me walking around getting alot worse to the point of walking pneumonia among others.

Now I <u>always </u>have my nurse call and tell me results of my tests, all of them vitamin levels, cultures etc, if she doesnt then I email her askign for them, I also started asking for copies PFT report at the appointment. They have tried the 'if we dont call its ok' routine but that is a NO GO for me, they are too bsuy I cant guarantee they didnt just overlook me so they will call me even just to say all vitamin levels looked good <img src="i/expressions/face-icon-small-happy.gif" border="0">, yes I'm a PITA!

I like ratatosk's idea of getting all the records!
 

mom2lillian

New member
I had this happen before I was diagnosed a doctor *forgot* to call back and tell me I had mono which resulted in me walking around getting alot worse to the point of walking pneumonia among others.

Now I <u>always </u>have my nurse call and tell me results of my tests, all of them vitamin levels, cultures etc, if she doesnt then I email her askign for them, I also started asking for copies PFT report at the appointment. They have tried the 'if we dont call its ok' routine but that is a NO GO for me, they are too bsuy I cant guarantee they didnt just overlook me so they will call me even just to say all vitamin levels looked good <img src="i/expressions/face-icon-small-happy.gif" border="0">, yes I'm a PITA!

I like ratatosk's idea of getting all the records!
 

mom2lillian

New member
I had this happen before I was diagnosed a doctor *forgot* to call back and tell me I had mono which resulted in me walking around getting alot worse to the point of walking pneumonia among others.

Now I <u>always </u>have my nurse call and tell me results of my tests, all of them vitamin levels, cultures etc, if she doesnt then I email her askign for them, I also started asking for copies PFT report at the appointment. They have tried the 'if we dont call its ok' routine but that is a NO GO for me, they are too bsuy I cant guarantee they didnt just overlook me so they will call me even just to say all vitamin levels looked good <img src="i/expressions/face-icon-small-happy.gif" border="0">, yes I'm a PITA!

I like ratatosk's idea of getting all the records!
 

mom2lillian

New member
I had this happen before I was diagnosed a doctor *forgot* to call back and tell me I had mono which resulted in me walking around getting alot worse to the point of walking pneumonia among others.

Now I <u>always </u>have my nurse call and tell me results of my tests, all of them vitamin levels, cultures etc, if she doesnt then I email her askign for them, I also started asking for copies PFT report at the appointment. They have tried the 'if we dont call its ok' routine but that is a NO GO for me, they are too bsuy I cant guarantee they didnt just overlook me so they will call me even just to say all vitamin levels looked good <img src="i/expressions/face-icon-small-happy.gif" border="0">, yes I'm a PITA!

I like ratatosk's idea of getting all the records!
 
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