Question for California CFers (or their families)

N

NoExcuses

New member
i went to CHLA from 1981-1999. They went down hill at around 1996 and haven't returned, from what I hear. I'm involved in our local CF chapter so I hear quite a bit.

Docs are pretty old school - lots of telling patients what to do instead of truly understanding what's going on. Clinical outcomes are horrendous as well overall probably due to the style of physicians.

The population at CHLA is also extremely poor which unfortunately can contribute to that poor patient outcome #, so take it with a grain of salt. A large population doesn't speak English which naturally puts a barrier between patients and doctors. But this spills over to other patients.

So I wouldn't recommend CHLA but everything I hear is 2nd hand, so take it with a grain of salt. Definitely visit the clinic if you think you might want to make it your CF Center.
 
N

NoExcuses

New member
i went to CHLA from 1981-1999. They went down hill at around 1996 and haven't returned, from what I hear. I'm involved in our local CF chapter so I hear quite a bit.

Docs are pretty old school - lots of telling patients what to do instead of truly understanding what's going on. Clinical outcomes are horrendous as well overall probably due to the style of physicians.

The population at CHLA is also extremely poor which unfortunately can contribute to that poor patient outcome #, so take it with a grain of salt. A large population doesn't speak English which naturally puts a barrier between patients and doctors. But this spills over to other patients.

So I wouldn't recommend CHLA but everything I hear is 2nd hand, so take it with a grain of salt. Definitely visit the clinic if you think you might want to make it your CF Center.
 
N

NoExcuses

New member
i went to CHLA from 1981-1999. They went down hill at around 1996 and haven't returned, from what I hear. I'm involved in our local CF chapter so I hear quite a bit.

Docs are pretty old school - lots of telling patients what to do instead of truly understanding what's going on. Clinical outcomes are horrendous as well overall probably due to the style of physicians.

The population at CHLA is also extremely poor which unfortunately can contribute to that poor patient outcome #, so take it with a grain of salt. A large population doesn't speak English which naturally puts a barrier between patients and doctors. But this spills over to other patients.

So I wouldn't recommend CHLA but everything I hear is 2nd hand, so take it with a grain of salt. Definitely visit the clinic if you think you might want to make it your CF Center.
 
N

NoExcuses

New member
i went to CHLA from 1981-1999. They went down hill at around 1996 and haven't returned, from what I hear. I'm involved in our local CF chapter so I hear quite a bit.

Docs are pretty old school - lots of telling patients what to do instead of truly understanding what's going on. Clinical outcomes are horrendous as well overall probably due to the style of physicians.

The population at CHLA is also extremely poor which unfortunately can contribute to that poor patient outcome #, so take it with a grain of salt. A large population doesn't speak English which naturally puts a barrier between patients and doctors. But this spills over to other patients.

So I wouldn't recommend CHLA but everything I hear is 2nd hand, so take it with a grain of salt. Definitely visit the clinic if you think you might want to make it your CF Center.
 
N

NoExcuses

New member
i went to CHLA from 1981-1999. They went down hill at around 1996 and haven't returned, from what I hear. I'm involved in our local CF chapter so I hear quite a bit.
<br />
<br />Docs are pretty old school - lots of telling patients what to do instead of truly understanding what's going on. Clinical outcomes are horrendous as well overall probably due to the style of physicians.
<br />
<br />The population at CHLA is also extremely poor which unfortunately can contribute to that poor patient outcome #, so take it with a grain of salt. A large population doesn't speak English which naturally puts a barrier between patients and doctors. But this spills over to other patients.
<br />
<br />So I wouldn't recommend CHLA but everything I hear is 2nd hand, so take it with a grain of salt. Definitely visit the clinic if you think you might want to make it your CF Center.
 
F

froggymama

New member
We go to Children's Hospital in LA. I have mixed feelings about my daughter's care. They absolutely saved my daughter's life, when she was diagnosed and we spent three weeks in the hospital. And I like our Pulmonologist, but there have been many times when, had I not asked a question, I wouldn't have known anything. You have to be your child's advocate, call until you get a call-back, and sometimes I think a smaller clinic in a smaller town would be better to receive more personal care. But, like I said I really agree with and like our pulmonologist and feel that she is progressive and aggressively fighting for us. I wish our clinic had a gastro-enterologist, and dealt with digestive issues as seriously as pulmonary. And I wish they took nutrition more seriously than fat-calorie intake, but maybe that's just me. I've never received a call-back from the CF social worker, despite my many calls, and sometimes the 'sick call' line is busy. But I'm pretty determined to be a pain in the butt until my kiddo gets care, so these things don't bother me too much. My big concern about LA is the air quality. I'm hoping, when my husband graduates, we'll be able to move to cleaner air!
 
F

froggymama

New member
We go to Children's Hospital in LA. I have mixed feelings about my daughter's care. They absolutely saved my daughter's life, when she was diagnosed and we spent three weeks in the hospital. And I like our Pulmonologist, but there have been many times when, had I not asked a question, I wouldn't have known anything. You have to be your child's advocate, call until you get a call-back, and sometimes I think a smaller clinic in a smaller town would be better to receive more personal care. But, like I said I really agree with and like our pulmonologist and feel that she is progressive and aggressively fighting for us. I wish our clinic had a gastro-enterologist, and dealt with digestive issues as seriously as pulmonary. And I wish they took nutrition more seriously than fat-calorie intake, but maybe that's just me. I've never received a call-back from the CF social worker, despite my many calls, and sometimes the 'sick call' line is busy. But I'm pretty determined to be a pain in the butt until my kiddo gets care, so these things don't bother me too much. My big concern about LA is the air quality. I'm hoping, when my husband graduates, we'll be able to move to cleaner air!
 
F

froggymama

New member
We go to Children's Hospital in LA. I have mixed feelings about my daughter's care. They absolutely saved my daughter's life, when she was diagnosed and we spent three weeks in the hospital. And I like our Pulmonologist, but there have been many times when, had I not asked a question, I wouldn't have known anything. You have to be your child's advocate, call until you get a call-back, and sometimes I think a smaller clinic in a smaller town would be better to receive more personal care. But, like I said I really agree with and like our pulmonologist and feel that she is progressive and aggressively fighting for us. I wish our clinic had a gastro-enterologist, and dealt with digestive issues as seriously as pulmonary. And I wish they took nutrition more seriously than fat-calorie intake, but maybe that's just me. I've never received a call-back from the CF social worker, despite my many calls, and sometimes the 'sick call' line is busy. But I'm pretty determined to be a pain in the butt until my kiddo gets care, so these things don't bother me too much. My big concern about LA is the air quality. I'm hoping, when my husband graduates, we'll be able to move to cleaner air!
 
F

froggymama

New member
We go to Children's Hospital in LA. I have mixed feelings about my daughter's care. They absolutely saved my daughter's life, when she was diagnosed and we spent three weeks in the hospital. And I like our Pulmonologist, but there have been many times when, had I not asked a question, I wouldn't have known anything. You have to be your child's advocate, call until you get a call-back, and sometimes I think a smaller clinic in a smaller town would be better to receive more personal care. But, like I said I really agree with and like our pulmonologist and feel that she is progressive and aggressively fighting for us. I wish our clinic had a gastro-enterologist, and dealt with digestive issues as seriously as pulmonary. And I wish they took nutrition more seriously than fat-calorie intake, but maybe that's just me. I've never received a call-back from the CF social worker, despite my many calls, and sometimes the 'sick call' line is busy. But I'm pretty determined to be a pain in the butt until my kiddo gets care, so these things don't bother me too much. My big concern about LA is the air quality. I'm hoping, when my husband graduates, we'll be able to move to cleaner air!
 
F

froggymama

New member
We go to Children's Hospital in LA. I have mixed feelings about my daughter's care. They absolutely saved my daughter's life, when she was diagnosed and we spent three weeks in the hospital. And I like our Pulmonologist, but there have been many times when, had I not asked a question, I wouldn't have known anything. You have to be your child's advocate, call until you get a call-back, and sometimes I think a smaller clinic in a smaller town would be better to receive more personal care. But, like I said I really agree with and like our pulmonologist and feel that she is progressive and aggressively fighting for us. I wish our clinic had a gastro-enterologist, and dealt with digestive issues as seriously as pulmonary. And I wish they took nutrition more seriously than fat-calorie intake, but maybe that's just me. I've never received a call-back from the CF social worker, despite my many calls, and sometimes the 'sick call' line is busy. But I'm pretty determined to be a pain in the butt until my kiddo gets care, so these things don't bother me too much. My big concern about LA is the air quality. I'm hoping, when my husband graduates, we'll be able to move to cleaner air!
 
J

juls

Guest
Froggymama,

Who do you see at CHLA? I tried to send you a PM, but couldn't figure out how. I know how to view a message, but not how to create a new one!

CHLA is the 'closer' clinic that we go to (see my previous post).

Julie
 
J

juls

Guest
Froggymama,

Who do you see at CHLA? I tried to send you a PM, but couldn't figure out how. I know how to view a message, but not how to create a new one!

CHLA is the 'closer' clinic that we go to (see my previous post).

Julie
 
J

juls

Guest
Froggymama,

Who do you see at CHLA? I tried to send you a PM, but couldn't figure out how. I know how to view a message, but not how to create a new one!

CHLA is the 'closer' clinic that we go to (see my previous post).

Julie
 
J

juls

Guest
Froggymama,

Who do you see at CHLA? I tried to send you a PM, but couldn't figure out how. I know how to view a message, but not how to create a new one!

CHLA is the 'closer' clinic that we go to (see my previous post).

Julie
 
J

juls

Guest
Froggymama,
<br />
<br />Who do you see at CHLA? I tried to send you a PM, but couldn't figure out how. I know how to view a message, but not how to create a new one!
<br />
<br />CHLA is the 'closer' clinic that we go to (see my previous post).
<br />
<br />Julie
 
L

liebe

New member
We are in Northern California and go clinic in Sacramento and do some follow-up appointments at Stanford. If you are looking for information on clinics in Northern California you can email me at newmansconsulting@comcast.net.
 
L

liebe

New member
We are in Northern California and go clinic in Sacramento and do some follow-up appointments at Stanford. If you are looking for information on clinics in Northern California you can email me at newmansconsulting@comcast.net.
 
L

liebe

New member
We are in Northern California and go clinic in Sacramento and do some follow-up appointments at Stanford. If you are looking for information on clinics in Northern California you can email me at newmansconsulting@comcast.net.
 
L

liebe

New member
We are in Northern California and go clinic in Sacramento and do some follow-up appointments at Stanford. If you are looking for information on clinics in Northern California you can email me at newmansconsulting@comcast.net.
 
L

liebe

New member
We are in Northern California and go clinic in Sacramento and do some follow-up appointments at Stanford. If you are looking for information on clinics in Northern California you can email me at newmansconsulting@comcast.net.
 
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