Opinions wanted

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luv2run</b></i>

Thank you Scarlett. Wow - your appts are way different than mine. I haven't had bloodwork done in 5 years! I think I'm gonna check out another dr - I feel like I'm shopping for a new car!!! Haha</end quote></div>

I go to the same CF Center as Christian. Besides the "annual" workup, they will do testing according to our needs/health. Like if I was in the hospital chances are good that for a few follow ups I will have bloood work, xrays & sputum cultures until they feel we are "safe".

It almost sounds like your daughter is so worried about treating the "patient" instead of the "CF" that the CF isnt getting treated!

Have you addressed it with him? Even if you have. I think its wise that you at least check in with an Accredited CF Center. If nothing else for annual visits.

Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luv2run</b></i>

Thank you Scarlett. Wow - your appts are way different than mine. I haven't had bloodwork done in 5 years! I think I'm gonna check out another dr - I feel like I'm shopping for a new car!!! Haha</end quote></div>

I go to the same CF Center as Christian. Besides the "annual" workup, they will do testing according to our needs/health. Like if I was in the hospital chances are good that for a few follow ups I will have bloood work, xrays & sputum cultures until they feel we are "safe".

It almost sounds like your daughter is so worried about treating the "patient" instead of the "CF" that the CF isnt getting treated!

Have you addressed it with him? Even if you have. I think its wise that you at least check in with an Accredited CF Center. If nothing else for annual visits.

Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luv2run</b></i>

Thank you Scarlett. Wow - your appts are way different than mine. I haven't had bloodwork done in 5 years! I think I'm gonna check out another dr - I feel like I'm shopping for a new car!!! Haha</end quote></div>

I go to the same CF Center as Christian. Besides the "annual" workup, they will do testing according to our needs/health. Like if I was in the hospital chances are good that for a few follow ups I will have bloood work, xrays & sputum cultures until they feel we are "safe".

It almost sounds like your daughter is so worried about treating the "patient" instead of the "CF" that the CF isnt getting treated!

Have you addressed it with him? Even if you have. I think its wise that you at least check in with an Accredited CF Center. If nothing else for annual visits.

Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luv2run</b></i>

Thank you Scarlett. Wow - your appts are way different than mine. I haven't had bloodwork done in 5 years! I think I'm gonna check out another dr - I feel like I'm shopping for a new car!!! Haha</end quote>

I go to the same CF Center as Christian. Besides the "annual" workup, they will do testing according to our needs/health. Like if I was in the hospital chances are good that for a few follow ups I will have bloood work, xrays & sputum cultures until they feel we are "safe".

It almost sounds like your daughter is so worried about treating the "patient" instead of the "CF" that the CF isnt getting treated!

Have you addressed it with him? Even if you have. I think its wise that you at least check in with an Accredited CF Center. If nothing else for annual visits.

Good Luck

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luv2run</b></i>
<br />
<br />Thank you Scarlett. Wow - your appts are way different than mine. I haven't had bloodwork done in 5 years! I think I'm gonna check out another dr - I feel like I'm shopping for a new car!!! Haha</end quote>
<br />
<br />I go to the same CF Center as Christian. Besides the "annual" workup, they will do testing according to our needs/health. Like if I was in the hospital chances are good that for a few follow ups I will have bloood work, xrays & sputum cultures until they feel we are "safe".
<br />
<br />It almost sounds like your daughter is so worried about treating the "patient" instead of the "CF" that the CF isnt getting treated!
<br />
<br />Have you addressed it with him? Even if you have. I think its wise that you at least check in with an Accredited CF Center. If nothing else for annual visits.
<br />
<br />Good Luck

 

[thefrogprincess]

No, this does not seem normal. I go to clinic ever 3 months and have PFTs every time. I get an x-ray once a year, more if I am sick. Having PFTs so infrequently does not give you an idea of your baseline. You need to know this so you know when its not where it should be.

Also, do you see a dietician? Have regular blood work? Checked for diabetes? Have you ever had a bone density scan? These are all part of CF care for adults. Any accredited CF center would see what you're getting as substandard care. I would seriously consider going to an accredited center. Besides, if going to this doc is "torture" that is a problem!

 

[thefrogprincess]

No, this does not seem normal. I go to clinic ever 3 months and have PFTs every time. I get an x-ray once a year, more if I am sick. Having PFTs so infrequently does not give you an idea of your baseline. You need to know this so you know when its not where it should be.

Also, do you see a dietician? Have regular blood work? Checked for diabetes? Have you ever had a bone density scan? These are all part of CF care for adults. Any accredited CF center would see what you're getting as substandard care. I would seriously consider going to an accredited center. Besides, if going to this doc is "torture" that is a problem!

 

[thefrogprincess]

No, this does not seem normal. I go to clinic ever 3 months and have PFTs every time. I get an x-ray once a year, more if I am sick. Having PFTs so infrequently does not give you an idea of your baseline. You need to know this so you know when its not where it should be.

Also, do you see a dietician? Have regular blood work? Checked for diabetes? Have you ever had a bone density scan? These are all part of CF care for adults. Any accredited CF center would see what you're getting as substandard care. I would seriously consider going to an accredited center. Besides, if going to this doc is "torture" that is a problem!

 

[thefrogprincess]

No, this does not seem normal. I go to clinic ever 3 months and have PFTs every time. I get an x-ray once a year, more if I am sick. Having PFTs so infrequently does not give you an idea of your baseline. You need to know this so you know when its not where it should be.

Also, do you see a dietician? Have regular blood work? Checked for diabetes? Have you ever had a bone density scan? These are all part of CF care for adults. Any accredited CF center would see what you're getting as substandard care. I would seriously consider going to an accredited center. Besides, if going to this doc is "torture" that is a problem!

 

[thefrogprincess]

No, this does not seem normal. I go to clinic ever 3 months and have PFTs every time. I get an x-ray once a year, more if I am sick. Having PFTs so infrequently does not give you an idea of your baseline. You need to know this so you know when its not where it should be.
<br />
<br />Also, do you see a dietician? Have regular blood work? Checked for diabetes? Have you ever had a bone density scan? These are all part of CF care for adults. Any accredited CF center would see what you're getting as substandard care. I would seriously consider going to an accredited center. Besides, if going to this doc is "torture" that is a problem!

 

[tara]

When I was healthy and only saw the doctor twice a year I always got PFTs done in the office and was sent on my way to get blood work, sputum and and xray. That was the minimum.

As my disease has progressed I see the doctor every 2 months (I never seem to be able to hit that 3 months mark without getting sick.) The blood work and sputum cultures are more frequent and PFTs are of course with every visit. There are additional annual labs as well as CT scans of my sinus' and chest and bone density scans annually as well.

Your doctor does not seem to understand the urgency of preventative medicine. I would switch immediately. You are not getting proper CF care.

 

[tara]

When I was healthy and only saw the doctor twice a year I always got PFTs done in the office and was sent on my way to get blood work, sputum and and xray. That was the minimum.

As my disease has progressed I see the doctor every 2 months (I never seem to be able to hit that 3 months mark without getting sick.) The blood work and sputum cultures are more frequent and PFTs are of course with every visit. There are additional annual labs as well as CT scans of my sinus' and chest and bone density scans annually as well.

Your doctor does not seem to understand the urgency of preventative medicine. I would switch immediately. You are not getting proper CF care.

 

[tara]

When I was healthy and only saw the doctor twice a year I always got PFTs done in the office and was sent on my way to get blood work, sputum and and xray. That was the minimum.

As my disease has progressed I see the doctor every 2 months (I never seem to be able to hit that 3 months mark without getting sick.) The blood work and sputum cultures are more frequent and PFTs are of course with every visit. There are additional annual labs as well as CT scans of my sinus' and chest and bone density scans annually as well.

Your doctor does not seem to understand the urgency of preventative medicine. I would switch immediately. You are not getting proper CF care.

 

[tara]

When I was healthy and only saw the doctor twice a year I always got PFTs done in the office and was sent on my way to get blood work, sputum and and xray. That was the minimum.

As my disease has progressed I see the doctor every 2 months (I never seem to be able to hit that 3 months mark without getting sick.) The blood work and sputum cultures are more frequent and PFTs are of course with every visit. There are additional annual labs as well as CT scans of my sinus' and chest and bone density scans annually as well.

Your doctor does not seem to understand the urgency of preventative medicine. I would switch immediately. You are not getting proper CF care.

 

[tara]

When I was healthy and only saw the doctor twice a year I always got PFTs done in the office and was sent on my way to get blood work, sputum and and xray. That was the minimum.
<br />
<br />As my disease has progressed I see the doctor every 2 months (I never seem to be able to hit that 3 months mark without getting sick.) The blood work and sputum cultures are more frequent and PFTs are of course with every visit. There are additional annual labs as well as CT scans of my sinus' and chest and bone density scans annually as well.
<br />
<br />Your doctor does not seem to understand the urgency of preventative medicine. I would switch immediately. You are not getting proper CF care.

 

[NYCLawGirl]

I think I have similar advice to what's already been said. I've gone to three different CFF-approved clinics (Denver Children's, Emory in Atlanta, and Columbia/NY Pres.) for regulr care throughout the years. There are variations, but generally the tests and procedures have been the same at each. I would be highly skeptical of a clinic that didn't do what I consider the bare minimum:
1) PFTs at every visit, or at any rate no less than every 3 to 6 months
2) Weight and vitals (02 sats) each visit
3) Once a year complete bloodwork, glucose test, and chest xray (preferably CT scan yearly)
4) Sputum cultures no less than every 6 months

Not quite as crucial for me but still really important:
1) Regular updates on advancement in therapy techniques, new meds, etc.
2) Some sort of emotional check in with a social worker every so often, probably once a year

The biggest thing here may not even be the quality of care. You don't seem happy with your doc, and for me that's a sure sign you need to find a new one. If possible, try to look for an accredited CF care center. I know it sounds like a tedious job to find one, but trust me you will be so much happier with docs who know all about CF and the physical/emotional complications. Also, with CFF centers you can get on important studies, and that is a huge plus in my book.

 

[NYCLawGirl]

I think I have similar advice to what's already been said. I've gone to three different CFF-approved clinics (Denver Children's, Emory in Atlanta, and Columbia/NY Pres.) for regulr care throughout the years. There are variations, but generally the tests and procedures have been the same at each. I would be highly skeptical of a clinic that didn't do what I consider the bare minimum:
1) PFTs at every visit, or at any rate no less than every 3 to 6 months
2) Weight and vitals (02 sats) each visit
3) Once a year complete bloodwork, glucose test, and chest xray (preferably CT scan yearly)
4) Sputum cultures no less than every 6 months

Not quite as crucial for me but still really important:
1) Regular updates on advancement in therapy techniques, new meds, etc.
2) Some sort of emotional check in with a social worker every so often, probably once a year

The biggest thing here may not even be the quality of care. You don't seem happy with your doc, and for me that's a sure sign you need to find a new one. If possible, try to look for an accredited CF care center. I know it sounds like a tedious job to find one, but trust me you will be so much happier with docs who know all about CF and the physical/emotional complications. Also, with CFF centers you can get on important studies, and that is a huge plus in my book.

 

[NYCLawGirl]

I think I have similar advice to what's already been said. I've gone to three different CFF-approved clinics (Denver Children's, Emory in Atlanta, and Columbia/NY Pres.) for regulr care throughout the years. There are variations, but generally the tests and procedures have been the same at each. I would be highly skeptical of a clinic that didn't do what I consider the bare minimum:
1) PFTs at every visit, or at any rate no less than every 3 to 6 months
2) Weight and vitals (02 sats) each visit
3) Once a year complete bloodwork, glucose test, and chest xray (preferably CT scan yearly)
4) Sputum cultures no less than every 6 months

Not quite as crucial for me but still really important:
1) Regular updates on advancement in therapy techniques, new meds, etc.
2) Some sort of emotional check in with a social worker every so often, probably once a year

The biggest thing here may not even be the quality of care. You don't seem happy with your doc, and for me that's a sure sign you need to find a new one. If possible, try to look for an accredited CF care center. I know it sounds like a tedious job to find one, but trust me you will be so much happier with docs who know all about CF and the physical/emotional complications. Also, with CFF centers you can get on important studies, and that is a huge plus in my book.

 

[NYCLawGirl]

I think I have similar advice to what's already been said. I've gone to three different CFF-approved clinics (Denver Children's, Emory in Atlanta, and Columbia/NY Pres.) for regulr care throughout the years. There are variations, but generally the tests and procedures have been the same at each. I would be highly skeptical of a clinic that didn't do what I consider the bare minimum:
1) PFTs at every visit, or at any rate no less than every 3 to 6 months
2) Weight and vitals (02 sats) each visit
3) Once a year complete bloodwork, glucose test, and chest xray (preferably CT scan yearly)
4) Sputum cultures no less than every 6 months

Not quite as crucial for me but still really important:
1) Regular updates on advancement in therapy techniques, new meds, etc.
2) Some sort of emotional check in with a social worker every so often, probably once a year

The biggest thing here may not even be the quality of care. You don't seem happy with your doc, and for me that's a sure sign you need to find a new one. If possible, try to look for an accredited CF care center. I know it sounds like a tedious job to find one, but trust me you will be so much happier with docs who know all about CF and the physical/emotional complications. Also, with CFF centers you can get on important studies, and that is a huge plus in my book.

 

[NYCLawGirl]

I think I have similar advice to what's already been said. I've gone to three different CFF-approved clinics (Denver Children's, Emory in Atlanta, and Columbia/NY Pres.) for regulr care throughout the years. There are variations, but generally the tests and procedures have been the same at each. I would be highly skeptical of a clinic that didn't do what I consider the bare minimum:
<br />1) PFTs at every visit, or at any rate no less than every 3 to 6 months
<br />2) Weight and vitals (02 sats) each visit
<br />3) Once a year complete bloodwork, glucose test, and chest xray (preferably CT scan yearly)
<br />4) Sputum cultures no less than every 6 months
<br />
<br />Not quite as crucial for me but still really important:
<br />1) Regular updates on advancement in therapy techniques, new meds, etc.
<br />2) Some sort of emotional check in with a social worker every so often, probably once a year
<br />
<br />The biggest thing here may not even be the quality of care. You don't seem happy with your doc, and for me that's a sure sign you need to find a new one. If possible, try to look for an accredited CF care center. I know it sounds like a tedious job to find one, but trust me you will be so much happier with docs who know all about CF and the physical/emotional complications. Also, with CFF centers you can get on important studies, and that is a huge plus in my book.