Disappointed with my CF clinic

L

lightNlife

New member
When I first started going to my adult CF clinic, I loved it. I liked having a doctor that knew more about CF than I did. I have a TREMENDOUSLY competent team when I was still seeing a pediatrician at my other CF clinic. They had plenty of specialists on staff who were ALWAYS at every appointment. Gastroenterologist, respiratory therapist, nutritionist, endocrinologist, CF specialist, asthma specialist and social worker.

Where I'm at now there are students who take my vitals...sometimes
A CF specialist who sees me...sometimes
Case manager who sees me...sometimes, but she's almost always reachable by phone.
Social worker who is AWESOME and is always faithful to return calls.

When I'm hospitalized, I only get to see my specialist 2 times a week. I get bounced from internal medicine doc to family practice docs. Things get lost in the shuffle and we have to reinvent the wheel each time.

Have any of you taken the "road less traveled" and simply just gone to an internal medicine doc just to avoid the hassle? If so, do you think your health has changed (either positively or negatively) as a result?

I hate to abandon ship after I've spent 4 years "training" my CF to know me and my needs. But something isn't working. What happened to the team approach? Now they just put out fires. Not a good way to enhance the quality of life for a CFer. I'm disappointed and mad about it.

Thanks in advance for your thoughts and opinions. I appreciate them.
 
L

lightNlife

New member
When I first started going to my adult CF clinic, I loved it. I liked having a doctor that knew more about CF than I did. I have a TREMENDOUSLY competent team when I was still seeing a pediatrician at my other CF clinic. They had plenty of specialists on staff who were ALWAYS at every appointment. Gastroenterologist, respiratory therapist, nutritionist, endocrinologist, CF specialist, asthma specialist and social worker.

Where I'm at now there are students who take my vitals...sometimes
A CF specialist who sees me...sometimes
Case manager who sees me...sometimes, but she's almost always reachable by phone.
Social worker who is AWESOME and is always faithful to return calls.

When I'm hospitalized, I only get to see my specialist 2 times a week. I get bounced from internal medicine doc to family practice docs. Things get lost in the shuffle and we have to reinvent the wheel each time.

Have any of you taken the "road less traveled" and simply just gone to an internal medicine doc just to avoid the hassle? If so, do you think your health has changed (either positively or negatively) as a result?

I hate to abandon ship after I've spent 4 years "training" my CF to know me and my needs. But something isn't working. What happened to the team approach? Now they just put out fires. Not a good way to enhance the quality of life for a CFer. I'm disappointed and mad about it.

Thanks in advance for your thoughts and opinions. I appreciate them.
 
L

lightNlife

New member
When I first started going to my adult CF clinic, I loved it. I liked having a doctor that knew more about CF than I did. I have a TREMENDOUSLY competent team when I was still seeing a pediatrician at my other CF clinic. They had plenty of specialists on staff who were ALWAYS at every appointment. Gastroenterologist, respiratory therapist, nutritionist, endocrinologist, CF specialist, asthma specialist and social worker.

Where I'm at now there are students who take my vitals...sometimes
A CF specialist who sees me...sometimes
Case manager who sees me...sometimes, but she's almost always reachable by phone.
Social worker who is AWESOME and is always faithful to return calls.

When I'm hospitalized, I only get to see my specialist 2 times a week. I get bounced from internal medicine doc to family practice docs. Things get lost in the shuffle and we have to reinvent the wheel each time.

Have any of you taken the "road less traveled" and simply just gone to an internal medicine doc just to avoid the hassle? If so, do you think your health has changed (either positively or negatively) as a result?

I hate to abandon ship after I've spent 4 years "training" my CF to know me and my needs. But something isn't working. What happened to the team approach? Now they just put out fires. Not a good way to enhance the quality of life for a CFer. I'm disappointed and mad about it.

Thanks in advance for your thoughts and opinions. I appreciate them.
 
A

Allie

New member
My suggestion? Private Pulmonologist. Ry did so much better after he switched. It involves a bit more research on your part, and a bit more study, but in the long run, it worked much better for Ry. We assembled our own team of experts, and Ry did wonderfully, better than he had his whole life, until cepacia hit.
 
A

Allie

New member
My suggestion? Private Pulmonologist. Ry did so much better after he switched. It involves a bit more research on your part, and a bit more study, but in the long run, it worked much better for Ry. We assembled our own team of experts, and Ry did wonderfully, better than he had his whole life, until cepacia hit.
 
A

Allie

New member
My suggestion? Private Pulmonologist. Ry did so much better after he switched. It involves a bit more research on your part, and a bit more study, but in the long run, it worked much better for Ry. We assembled our own team of experts, and Ry did wonderfully, better than he had his whole life, until cepacia hit.
 
J

JazzysMom

New member
I am guessing that it is an "accredited" CF clinic. Even if it is....it would seem that the care isnt as good due to the lack of structured care and concern of you being a person. Since you get shuffled, things get lost etc. I find that the quality of care couldnt be there. IF you want an accredited center, maybe there is another choice, but requires travel or using a private pulmonolist as Allie said Ry used. You could still go to the CF clinic for yearly tests etc if you felt it would be beneficial, but for your actual care and hospitalizations it sounds like you definitely need a change. Good Luck!
 
J

JazzysMom

New member
I am guessing that it is an "accredited" CF clinic. Even if it is....it would seem that the care isnt as good due to the lack of structured care and concern of you being a person. Since you get shuffled, things get lost etc. I find that the quality of care couldnt be there. IF you want an accredited center, maybe there is another choice, but requires travel or using a private pulmonolist as Allie said Ry used. You could still go to the CF clinic for yearly tests etc if you felt it would be beneficial, but for your actual care and hospitalizations it sounds like you definitely need a change. Good Luck!
 
J

JazzysMom

New member
I am guessing that it is an "accredited" CF clinic. Even if it is....it would seem that the care isnt as good due to the lack of structured care and concern of you being a person. Since you get shuffled, things get lost etc. I find that the quality of care couldnt be there. IF you want an accredited center, maybe there is another choice, but requires travel or using a private pulmonolist as Allie said Ry used. You could still go to the CF clinic for yearly tests etc if you felt it would be beneficial, but for your actual care and hospitalizations it sounds like you definitely need a change. Good Luck!
 
D

dyza

New member
Have you expressed your thoughts to the CF team, the way you just did for us, maybe they just need a kick up the arse to get them going in the right direction.
 
D

dyza

New member
Have you expressed your thoughts to the CF team, the way you just did for us, maybe they just need a kick up the arse to get them going in the right direction.
 
D

dyza

New member
Have you expressed your thoughts to the CF team, the way you just did for us, maybe they just need a kick up the arse to get them going in the right direction.
 
N

NoExcuses

New member
I agree with Craig.... maybe give them feedback.

But i don't blame you - I would get the heck out if I wasnt' satisfied with my care. This isnt' a disease to put out fires with... preventative care, as you konw, is the name of the game...

If it were me personally, i would move. I would find another job and pick up and move to a better CF center ( i know it's hard... for all you 'BUT IT'S HARD!!!!!!!!!!!' peoople get over it. lots of things in life are hard but we do them anyway).

I hope you find what your'e looking for.
 
N

NoExcuses

New member
I agree with Craig.... maybe give them feedback.

But i don't blame you - I would get the heck out if I wasnt' satisfied with my care. This isnt' a disease to put out fires with... preventative care, as you konw, is the name of the game...

If it were me personally, i would move. I would find another job and pick up and move to a better CF center ( i know it's hard... for all you 'BUT IT'S HARD!!!!!!!!!!!' peoople get over it. lots of things in life are hard but we do them anyway).

I hope you find what your'e looking for.
 
N

NoExcuses

New member
I agree with Craig.... maybe give them feedback.

But i don't blame you - I would get the heck out if I wasnt' satisfied with my care. This isnt' a disease to put out fires with... preventative care, as you konw, is the name of the game...

If it were me personally, i would move. I would find another job and pick up and move to a better CF center ( i know it's hard... for all you 'BUT IT'S HARD!!!!!!!!!!!' peoople get over it. lots of things in life are hard but we do them anyway).

I hope you find what your'e looking for.
 
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