Do you see a doctor that is a specific CF doctor?

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Asexyblond23

New member
I am wondering how many people see a doctor that is a CF doctor at a CF clinic and how many see a pulmologist? Of course the pulmonolist knows about Cf but isnt part of like an acreadited CF care center. Also if you have seen both which do you prefer? Is one better then the other? Im really trying to get some info b/c Im thinking of leaving a Cf doctor to go back to a doctor that used to work at a CF center but now works with a pulmologist group.
 
A

Asexyblond23

New member
I am wondering how many people see a doctor that is a CF doctor at a CF clinic and how many see a pulmologist? Of course the pulmonolist knows about Cf but isnt part of like an acreadited CF care center. Also if you have seen both which do you prefer? Is one better then the other? Im really trying to get some info b/c Im thinking of leaving a Cf doctor to go back to a doctor that used to work at a CF center but now works with a pulmologist group.
 
A

Asexyblond23

New member
I am wondering how many people see a doctor that is a CF doctor at a CF clinic and how many see a pulmologist? Of course the pulmonolist knows about Cf but isnt part of like an acreadited CF care center. Also if you have seen both which do you prefer? Is one better then the other? Im really trying to get some info b/c Im thinking of leaving a Cf doctor to go back to a doctor that used to work at a CF center but now works with a pulmologist group.
 
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lightNlife

New member
I see a CF doc at an accredited clinic. He is a pulmonologist with a CF specialty. My primary care doc is an internal medicine doc, but knows about CF. However, I only go to the primary care physician once or twice a year in order to get the referrals in place to go to the clinic.
 
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lightNlife

New member
I see a CF doc at an accredited clinic. He is a pulmonologist with a CF specialty. My primary care doc is an internal medicine doc, but knows about CF. However, I only go to the primary care physician once or twice a year in order to get the referrals in place to go to the clinic.
 
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lightNlife

New member
I see a CF doc at an accredited clinic. He is a pulmonologist with a CF specialty. My primary care doc is an internal medicine doc, but knows about CF. However, I only go to the primary care physician once or twice a year in order to get the referrals in place to go to the clinic.
 
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Allie

New member
Ry hated his Cf center care. He felt like a number. And the doctors didn't listen to him.

He gave it up, and got a private pulmonologist that was willing to work with him, and he did much better. Held at 75%-70% for 5 years, before cepacia hit.
It's different for everyone, so you have to find what works for you.
 
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Allie

New member
Ry hated his Cf center care. He felt like a number. And the doctors didn't listen to him.

He gave it up, and got a private pulmonologist that was willing to work with him, and he did much better. Held at 75%-70% for 5 years, before cepacia hit.
It's different for everyone, so you have to find what works for you.
 
A

Allie

New member
Ry hated his Cf center care. He felt like a number. And the doctors didn't listen to him.

He gave it up, and got a private pulmonologist that was willing to work with him, and he did much better. Held at 75%-70% for 5 years, before cepacia hit.
It's different for everyone, so you have to find what works for you.
 
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Emily65Roses

New member
I should add... I go to a CF center because I like the care I get there. If I was at a CF center that I hated, I wouldn't stay "just because it was a CF center." I got lucky in that my CF center has the most fantastic doc. Knows me, cares about my personal opinions/feelings, etc. Hypothetically, though, if I had to leave the CF center to find a doc I liked, I would.
 
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Emily65Roses

New member
I should add... I go to a CF center because I like the care I get there. If I was at a CF center that I hated, I wouldn't stay "just because it was a CF center." I got lucky in that my CF center has the most fantastic doc. Knows me, cares about my personal opinions/feelings, etc. Hypothetically, though, if I had to leave the CF center to find a doc I liked, I would.
 
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Emily65Roses

New member
I should add... I go to a CF center because I like the care I get there. If I was at a CF center that I hated, I wouldn't stay "just because it was a CF center." I got lucky in that my CF center has the most fantastic doc. Knows me, cares about my personal opinions/feelings, etc. Hypothetically, though, if I had to leave the CF center to find a doc I liked, I would.
 
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NoExcuses

New member
I am in the same boat as Emily - I adore my CF clinic. They listen to me, work with me, and are always open to my ideas. If I had Ry's situation, I would have probably done the same thing.

My clinic is small (less han 100 people) and I am not just a #.

I like that my CF doc treats other CF patients, and therefore he is always learning from them. He can take what he has learned and apply that experience to me. He also follows the latest guidelines, like seeing me every 3 months (i wouldn't have known that those were guidelines had it not been for him). he brought the "Denmark Way" to my attention as well, and likes to be extremely proactive in treating infections. Finally, he attends annual North American CF Conferences, which keeps him up to date on the latest info.

Of course, my doc isn't 100 % informed. I had to bring the eFlow to his attention (so he susequently visited the eFlow booth at the NACFC to better inform himself). So he's not perfect. But I like that he's at an accredited CF center.

But that being said, I understand Ry's perspective and I would probably do the same thing if I were in his position.
 
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NoExcuses

New member
I am in the same boat as Emily - I adore my CF clinic. They listen to me, work with me, and are always open to my ideas. If I had Ry's situation, I would have probably done the same thing.

My clinic is small (less han 100 people) and I am not just a #.

I like that my CF doc treats other CF patients, and therefore he is always learning from them. He can take what he has learned and apply that experience to me. He also follows the latest guidelines, like seeing me every 3 months (i wouldn't have known that those were guidelines had it not been for him). he brought the "Denmark Way" to my attention as well, and likes to be extremely proactive in treating infections. Finally, he attends annual North American CF Conferences, which keeps him up to date on the latest info.

Of course, my doc isn't 100 % informed. I had to bring the eFlow to his attention (so he susequently visited the eFlow booth at the NACFC to better inform himself). So he's not perfect. But I like that he's at an accredited CF center.

But that being said, I understand Ry's perspective and I would probably do the same thing if I were in his position.
 
N

NoExcuses

New member
I am in the same boat as Emily - I adore my CF clinic. They listen to me, work with me, and are always open to my ideas. If I had Ry's situation, I would have probably done the same thing.

My clinic is small (less han 100 people) and I am not just a #.

I like that my CF doc treats other CF patients, and therefore he is always learning from them. He can take what he has learned and apply that experience to me. He also follows the latest guidelines, like seeing me every 3 months (i wouldn't have known that those were guidelines had it not been for him). he brought the "Denmark Way" to my attention as well, and likes to be extremely proactive in treating infections. Finally, he attends annual North American CF Conferences, which keeps him up to date on the latest info.

Of course, my doc isn't 100 % informed. I had to bring the eFlow to his attention (so he susequently visited the eFlow booth at the NACFC to better inform himself). So he's not perfect. But I like that he's at an accredited CF center.

But that being said, I understand Ry's perspective and I would probably do the same thing if I were in his position.
 
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Brad

New member
I went to a Cf center when I was young,

for the last 18 years I have been seeing
a private Doc. Critical Care
Internal Medicine
Pulmonary Disease , He has 9 Cf folks that see Him.
Plus He worked with the Doc at the Cf center that
Dxed me.
 
B

Brad

New member
I went to a Cf center when I was young,

for the last 18 years I have been seeing
a private Doc. Critical Care
Internal Medicine
Pulmonary Disease , He has 9 Cf folks that see Him.
Plus He worked with the Doc at the Cf center that
Dxed me.
 
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