Opinions wanted

[findingher]

PFTs are more important than x-rays with me, too. When I go to clinic, the first thing done is PFTs, then vitals, then I see the doctor, and possibly the endocrinologist. If I'm underweight, the dietitian comes in, and sometimes the social worker pops in to check on me. Sometimes I get blood work done, and I often have sputum cultures.

 

[findingher]

PFTs are more important than x-rays with me, too. When I go to clinic, the first thing done is PFTs, then vitals, then I see the doctor, and possibly the endocrinologist. If I'm underweight, the dietitian comes in, and sometimes the social worker pops in to check on me. Sometimes I get blood work done, and I often have sputum cultures.

 

[findingher]

PFTs are more important than x-rays with me, too. When I go to clinic, the first thing done is PFTs, then vitals, then I see the doctor, and possibly the endocrinologist. If I'm underweight, the dietitian comes in, and sometimes the social worker pops in to check on me. Sometimes I get blood work done, and I often have sputum cultures.

 

[findingher]

PFTs are more important than x-rays with me, too. When I go to clinic, the first thing done is PFTs, then vitals, then I see the doctor, and possibly the endocrinologist. If I'm underweight, the dietitian comes in, and sometimes the social worker pops in to check on me. Sometimes I get blood work done, and I often have sputum cultures.

 

[findingher]

PFTs are more important than x-rays with me, too. When I go to clinic, the first thing done is PFTs, then vitals, then I see the doctor, and possibly the endocrinologist. If I'm underweight, the dietitian comes in, and sometimes the social worker pops in to check on me. Sometimes I get blood work done, and I often have sputum cultures.

 

[Sevenstars]

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

This is exactly what I get done. You other guys that replied... you really get bloodwork every visit? I only get it yearly. I do get a sputum culture every visit though, but it rarely changes.

Luci it sounds like your doc has no idea what he's doing, to be honest. Also, you'll be seeing your adult doctor, whoever that is, for a long long time. So, it'd probably be good to actually like him and trust him. Like everyone else, I'd recommend looking for another center.

 

[Sevenstars]

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

This is exactly what I get done. You other guys that replied... you really get bloodwork every visit? I only get it yearly. I do get a sputum culture every visit though, but it rarely changes.

Luci it sounds like your doc has no idea what he's doing, to be honest. Also, you'll be seeing your adult doctor, whoever that is, for a long long time. So, it'd probably be good to actually like him and trust him. Like everyone else, I'd recommend looking for another center.

 

[Sevenstars]

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

This is exactly what I get done. You other guys that replied... you really get bloodwork every visit? I only get it yearly. I do get a sputum culture every visit though, but it rarely changes.

Luci it sounds like your doc has no idea what he's doing, to be honest. Also, you'll be seeing your adult doctor, whoever that is, for a long long time. So, it'd probably be good to actually like him and trust him. Like everyone else, I'd recommend looking for another center.

 

[Sevenstars]

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

This is exactly what I get done. You other guys that replied... you really get bloodwork every visit? I only get it yearly. I do get a sputum culture every visit though, but it rarely changes.

Luci it sounds like your doc has no idea what he's doing, to be honest. Also, you'll be seeing your adult doctor, whoever that is, for a long long time. So, it'd probably be good to actually like him and trust him. Like everyone else, I'd recommend looking for another center.

 

[Sevenstars]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
<br />1) PFTs at every visit, or at any rate no less than every 3 to 6 months
<br />
<br />2) Weight and vitals (02 sats) each visit
<br />
<br />3) Once a year complete bloodwork, glucose test, and chest xray (preferably CT scan yearly)
<br />
<br />4) Sputum cultures no less than every 6 months
<br /></end quote>
<br />
<br />This is exactly what I get done. You other guys that replied... you really get bloodwork every visit? I only get it yearly. I do get a sputum culture every visit though, but it rarely changes.
<br />
<br />Luci it sounds like your doc has no idea what he's doing, to be honest. Also, you'll be seeing your adult doctor, whoever that is, for a long long time. So, it'd probably be good to actually like him and trust him. Like everyone else, I'd recommend looking for another center.
<br />
<br />

 

[ladybug]

I go to CF clinic every 4 months (more if I'm sick) for routine visit.

At each clinic:
Vitals, sputum culture, PFT, visit with doc, nutritionist, nurse and social worker

ONCE per year:
blood work drawn for vitamin levels, x-ray and maybe bone density scan if I request it

I have CFRD and have been told I don't need a re-check of oral glucose tolerance test.

I think the doc you are seeing seems more concerned with "normal" tests that you would look at with someone who doesnt' have CF. For example, when I've been to pulmonologists in the past that weren't CF experts, they've also focused a LOT on chest x-rays... Also, when I've gone to the ER with fevers, etc., they don't even bother doing sputum cultures (which they should!) and just do a chest x-ray, as that is kinda the "norm" for someone with lung disease. However, I've fought loud and hard with some of these ER docs and told them that's NOT what you base CF treatment on cause our lungs always look crappy (at least mine do).

Good luck to you... Wouldn't hurt to get a second opinion. Is there a local CF center you could visit?

 

[ladybug]

I go to CF clinic every 4 months (more if I'm sick) for routine visit.

At each clinic:
Vitals, sputum culture, PFT, visit with doc, nutritionist, nurse and social worker

ONCE per year:
blood work drawn for vitamin levels, x-ray and maybe bone density scan if I request it

I have CFRD and have been told I don't need a re-check of oral glucose tolerance test.

I think the doc you are seeing seems more concerned with "normal" tests that you would look at with someone who doesnt' have CF. For example, when I've been to pulmonologists in the past that weren't CF experts, they've also focused a LOT on chest x-rays... Also, when I've gone to the ER with fevers, etc., they don't even bother doing sputum cultures (which they should!) and just do a chest x-ray, as that is kinda the "norm" for someone with lung disease. However, I've fought loud and hard with some of these ER docs and told them that's NOT what you base CF treatment on cause our lungs always look crappy (at least mine do).

Good luck to you... Wouldn't hurt to get a second opinion. Is there a local CF center you could visit?

 

[ladybug]

I go to CF clinic every 4 months (more if I'm sick) for routine visit.

At each clinic:
Vitals, sputum culture, PFT, visit with doc, nutritionist, nurse and social worker

ONCE per year:
blood work drawn for vitamin levels, x-ray and maybe bone density scan if I request it

I have CFRD and have been told I don't need a re-check of oral glucose tolerance test.

I think the doc you are seeing seems more concerned with "normal" tests that you would look at with someone who doesnt' have CF. For example, when I've been to pulmonologists in the past that weren't CF experts, they've also focused a LOT on chest x-rays... Also, when I've gone to the ER with fevers, etc., they don't even bother doing sputum cultures (which they should!) and just do a chest x-ray, as that is kinda the "norm" for someone with lung disease. However, I've fought loud and hard with some of these ER docs and told them that's NOT what you base CF treatment on cause our lungs always look crappy (at least mine do).

Good luck to you... Wouldn't hurt to get a second opinion. Is there a local CF center you could visit?

 

[ladybug]

I go to CF clinic every 4 months (more if I'm sick) for routine visit.

At each clinic:
Vitals, sputum culture, PFT, visit with doc, nutritionist, nurse and social worker

ONCE per year:
blood work drawn for vitamin levels, x-ray and maybe bone density scan if I request it

I have CFRD and have been told I don't need a re-check of oral glucose tolerance test.

I think the doc you are seeing seems more concerned with "normal" tests that you would look at with someone who doesnt' have CF. For example, when I've been to pulmonologists in the past that weren't CF experts, they've also focused a LOT on chest x-rays... Also, when I've gone to the ER with fevers, etc., they don't even bother doing sputum cultures (which they should!) and just do a chest x-ray, as that is kinda the "norm" for someone with lung disease. However, I've fought loud and hard with some of these ER docs and told them that's NOT what you base CF treatment on cause our lungs always look crappy (at least mine do).

Good luck to you... Wouldn't hurt to get a second opinion. Is there a local CF center you could visit?

 

[ladybug]

I go to CF clinic every 4 months (more if I'm sick) for routine visit.
<br />
<br />At each clinic:
<br />Vitals, sputum culture, PFT, visit with doc, nutritionist, nurse and social worker
<br />
<br />ONCE per year:
<br />blood work drawn for vitamin levels, x-ray and maybe bone density scan if I request it
<br />
<br />I have CFRD and have been told I don't need a re-check of oral glucose tolerance test.
<br />
<br />I think the doc you are seeing seems more concerned with "normal" tests that you would look at with someone who doesnt' have CF. For example, when I've been to pulmonologists in the past that weren't CF experts, they've also focused a LOT on chest x-rays... Also, when I've gone to the ER with fevers, etc., they don't even bother doing sputum cultures (which they should!) and just do a chest x-ray, as that is kinda the "norm" for someone with lung disease. However, I've fought loud and hard with some of these ER docs and told them that's NOT what you base CF treatment on cause our lungs always look crappy (at least mine do).
<br />
<br />Good luck to you... Wouldn't hurt to get a second opinion. Is there a local CF center you could visit?

 

[luv2run]

Thank you all so much for your opinions and advice. I am going to look for an accredited cf center...I live between Baltimore and Phila. so I'm sure I'll find one, even if I have to travel. I'm ready to stop "playing" with my health and shop!!! Thanks again, any other advice is very welcome!

luci

 

[luv2run]

Thank you all so much for your opinions and advice. I am going to look for an accredited cf center...I live between Baltimore and Phila. so I'm sure I'll find one, even if I have to travel. I'm ready to stop "playing" with my health and shop!!! Thanks again, any other advice is very welcome!

luci

 

[luv2run]

Thank you all so much for your opinions and advice. I am going to look for an accredited cf center...I live between Baltimore and Phila. so I'm sure I'll find one, even if I have to travel. I'm ready to stop "playing" with my health and shop!!! Thanks again, any other advice is very welcome!

luci

 

[luv2run]

Thank you all so much for your opinions and advice. I am going to look for an accredited cf center...I live between Baltimore and Phila. so I'm sure I'll find one, even if I have to travel. I'm ready to stop "playing" with my health and shop!!! Thanks again, any other advice is very welcome!

luci

 

[luv2run]

Thank you all so much for your opinions and advice. I am going to look for an accredited cf center...I live between Baltimore and Phila. so I'm sure I'll find one, even if I have to travel. I'm ready to stop "playing" with my health and shop!!! Thanks again, any other advice is very welcome!
<br />
<br />luci