The city in which you live....

L

ladybug

New member
Hello,

Well, its official... we're moving.

We have to finish our final "dream list" for the military in the next week or so, and I've been diligently matching bases we could go to (limited by DH's occupation) and accredited centers (I'm part of the EFMP program and we are to be stationed near a center).

So, I have some very specific questions as I further my research. I have listed below the specific cities I'm interested in learning more about. PLEASE, if you live or have lived in these cities and have info. on the care your received, PLEASE respond to either this thread or PM me. I'd appreciate all the help I can get.

Please keep in mind,

A. I don't have to be seen at a military center since I have BCBS. So, any accredited center is fine.

B. I am able to drive approximately an hour each way to seek care (per MY particular EFMP rules).

Here are my specific questions regarding the specific cities listed below. Please only give me info. if you've been treated in or have first-hand knowledge of the centers in these areas. I appreciate it.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?

3. How was the air quality in the city you lived in?

4. How did the weather affect your CF in the city you lived in?

5. How close did you live to the city with the CF center?

6. Was it a large center, i.e. over 150+ patients, or relatively small?

7. Did they listen to you and include you in decision-making and treat you with respect?

8. Did your center offer clinical trials?

9. Did your center have a lung transplant center?

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?

11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)

Thank you for any info you can give!!!

<b>Here are the specific cities in question:

San Antonio

Denver/Colorado Springs

Tacoma

Baltimore

Virginia Beach

Sacramento

San Francisco/Stanford Medical Centers

Dayton, OH

Tripler Army Med Center, Hawaii</b>
 
L

ladybug

New member
Hello,

Well, its official... we're moving.

We have to finish our final "dream list" for the military in the next week or so, and I've been diligently matching bases we could go to (limited by DH's occupation) and accredited centers (I'm part of the EFMP program and we are to be stationed near a center).

So, I have some very specific questions as I further my research. I have listed below the specific cities I'm interested in learning more about. PLEASE, if you live or have lived in these cities and have info. on the care your received, PLEASE respond to either this thread or PM me. I'd appreciate all the help I can get.

Please keep in mind,

A. I don't have to be seen at a military center since I have BCBS. So, any accredited center is fine.

B. I am able to drive approximately an hour each way to seek care (per MY particular EFMP rules).

Here are my specific questions regarding the specific cities listed below. Please only give me info. if you've been treated in or have first-hand knowledge of the centers in these areas. I appreciate it.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?

3. How was the air quality in the city you lived in?

4. How did the weather affect your CF in the city you lived in?

5. How close did you live to the city with the CF center?

6. Was it a large center, i.e. over 150+ patients, or relatively small?

7. Did they listen to you and include you in decision-making and treat you with respect?

8. Did your center offer clinical trials?

9. Did your center have a lung transplant center?

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?

11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)

Thank you for any info you can give!!!

<b>Here are the specific cities in question:

San Antonio

Denver/Colorado Springs

Tacoma

Baltimore

Virginia Beach

Sacramento

San Francisco/Stanford Medical Centers

Dayton, OH

Tripler Army Med Center, Hawaii</b>
 
L

ladybug

New member
Hello,

Well, its official... we're moving.

We have to finish our final "dream list" for the military in the next week or so, and I've been diligently matching bases we could go to (limited by DH's occupation) and accredited centers (I'm part of the EFMP program and we are to be stationed near a center).

So, I have some very specific questions as I further my research. I have listed below the specific cities I'm interested in learning more about. PLEASE, if you live or have lived in these cities and have info. on the care your received, PLEASE respond to either this thread or PM me. I'd appreciate all the help I can get.

Please keep in mind,

A. I don't have to be seen at a military center since I have BCBS. So, any accredited center is fine.

B. I am able to drive approximately an hour each way to seek care (per MY particular EFMP rules).

Here are my specific questions regarding the specific cities listed below. Please only give me info. if you've been treated in or have first-hand knowledge of the centers in these areas. I appreciate it.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?

3. How was the air quality in the city you lived in?

4. How did the weather affect your CF in the city you lived in?

5. How close did you live to the city with the CF center?

6. Was it a large center, i.e. over 150+ patients, or relatively small?

7. Did they listen to you and include you in decision-making and treat you with respect?

8. Did your center offer clinical trials?

9. Did your center have a lung transplant center?

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?

11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)

Thank you for any info you can give!!!

<b>Here are the specific cities in question:

San Antonio

Denver/Colorado Springs

Tacoma

Baltimore

Virginia Beach

Sacramento

San Francisco/Stanford Medical Centers

Dayton, OH

Tripler Army Med Center, Hawaii</b>
 
L

ladybug

New member
Hello,

Well, its official... we're moving.

We have to finish our final "dream list" for the military in the next week or so, and I've been diligently matching bases we could go to (limited by DH's occupation) and accredited centers (I'm part of the EFMP program and we are to be stationed near a center).

So, I have some very specific questions as I further my research. I have listed below the specific cities I'm interested in learning more about. PLEASE, if you live or have lived in these cities and have info. on the care your received, PLEASE respond to either this thread or PM me. I'd appreciate all the help I can get.

Please keep in mind,

A. I don't have to be seen at a military center since I have BCBS. So, any accredited center is fine.

B. I am able to drive approximately an hour each way to seek care (per MY particular EFMP rules).

Here are my specific questions regarding the specific cities listed below. Please only give me info. if you've been treated in or have first-hand knowledge of the centers in these areas. I appreciate it.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?

3. How was the air quality in the city you lived in?

4. How did the weather affect your CF in the city you lived in?

5. How close did you live to the city with the CF center?

6. Was it a large center, i.e. over 150+ patients, or relatively small?

7. Did they listen to you and include you in decision-making and treat you with respect?

8. Did your center offer clinical trials?

9. Did your center have a lung transplant center?

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?

11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)

Thank you for any info you can give!!!

<b>Here are the specific cities in question:

San Antonio

Denver/Colorado Springs

Tacoma

Baltimore

Virginia Beach

Sacramento

San Francisco/Stanford Medical Centers

Dayton, OH

Tripler Army Med Center, Hawaii</b>
 
L

ladybug

New member
Hello,
<br />
<br />Well, its official... we're moving.
<br />
<br />We have to finish our final "dream list" for the military in the next week or so, and I've been diligently matching bases we could go to (limited by DH's occupation) and accredited centers (I'm part of the EFMP program and we are to be stationed near a center).
<br />
<br />So, I have some very specific questions as I further my research. I have listed below the specific cities I'm interested in learning more about. PLEASE, if you live or have lived in these cities and have info. on the care your received, PLEASE respond to either this thread or PM me. I'd appreciate all the help I can get.
<br />
<br />Please keep in mind,
<br />
<br />A. I don't have to be seen at a military center since I have BCBS. So, any accredited center is fine.
<br />
<br />B. I am able to drive approximately an hour each way to seek care (per MY particular EFMP rules).
<br />
<br />Here are my specific questions regarding the specific cities listed below. Please only give me info. if you've been treated in or have first-hand knowledge of the centers in these areas. I appreciate it.
<br />
<br />1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?
<br />
<br />2. Did they allow you to do home health for clean outs or were you required to stay inpatient?
<br />
<br />3. How was the air quality in the city you lived in?
<br />
<br />4. How did the weather affect your CF in the city you lived in?
<br />
<br />5. How close did you live to the city with the CF center?
<br />
<br />6. Was it a large center, i.e. over 150+ patients, or relatively small?
<br />
<br />7. Did they listen to you and include you in decision-making and treat you with respect?
<br />
<br />8. Did your center offer clinical trials?
<br />
<br />9. Did your center have a lung transplant center?
<br />
<br />10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?
<br />
<br />11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)
<br />
<br />Thank you for any info you can give!!!
<br />
<br /><b>Here are the specific cities in question:
<br />
<br />San Antonio
<br />
<br />Denver/Colorado Springs
<br />
<br />Tacoma
<br />
<br />Baltimore
<br />
<br />Virginia Beach
<br />
<br />Sacramento
<br />
<br />San Francisco/Stanford Medical Centers
<br />
<br />Dayton, OH
<br />
<br />Tripler Army Med Center, Hawaii</b>
<br />
<br />
 
N

NYCLawGirl

New member
I lived in Colorado Springs for the first 15 years of my life and in Denver from 15-18, but even after I moved to Atlanta for college I was seen at Denver Childrens CF center (parents still live there as well).

First: GORGEOUS area, amazing people, amazing friends, and did I mention gorgeous? I love colorado, and it will ALWAYS be my home state. Honestly one of the more beautiful places in the world.

Health: Frank Accurso, one of the top CF docs in the country practices out of Denver Childrens. It is a peds clinic, yes, but tons of adults go there (some quite well-known in the CF world, but would not want to invade their privacy so will not name names). He is the lead researcher on the Vertex study for the entire CFF, and others as well. If you have EVER wanted to be part of a clinic where the action is, this is your place. He is AMAZING. Many of us left him when we became adults and then went back b/c he was so amazing. I used to fly in from ATL for clinics. Another person I know flies in from TX, another from AZ, and another from Montana. Despite it all, he is always able to see you when ill, his staff and nurses are awesome, etc. Denver also has an amazing tx team if you ever need it. I would fly back from NYC to Denver for care without hesitation but for the fact that the doctor he recommended for me here is equally amazing. I promise you that you CF health will not suffer (and may well benefit) from a move to this clinic.

National Jewish I have also heard good things about, but I never considered switching even for an instant.
 
N

NYCLawGirl

New member
I lived in Colorado Springs for the first 15 years of my life and in Denver from 15-18, but even after I moved to Atlanta for college I was seen at Denver Childrens CF center (parents still live there as well).

First: GORGEOUS area, amazing people, amazing friends, and did I mention gorgeous? I love colorado, and it will ALWAYS be my home state. Honestly one of the more beautiful places in the world.

Health: Frank Accurso, one of the top CF docs in the country practices out of Denver Childrens. It is a peds clinic, yes, but tons of adults go there (some quite well-known in the CF world, but would not want to invade their privacy so will not name names). He is the lead researcher on the Vertex study for the entire CFF, and others as well. If you have EVER wanted to be part of a clinic where the action is, this is your place. He is AMAZING. Many of us left him when we became adults and then went back b/c he was so amazing. I used to fly in from ATL for clinics. Another person I know flies in from TX, another from AZ, and another from Montana. Despite it all, he is always able to see you when ill, his staff and nurses are awesome, etc. Denver also has an amazing tx team if you ever need it. I would fly back from NYC to Denver for care without hesitation but for the fact that the doctor he recommended for me here is equally amazing. I promise you that you CF health will not suffer (and may well benefit) from a move to this clinic.

National Jewish I have also heard good things about, but I never considered switching even for an instant.
 
N

NYCLawGirl

New member
I lived in Colorado Springs for the first 15 years of my life and in Denver from 15-18, but even after I moved to Atlanta for college I was seen at Denver Childrens CF center (parents still live there as well).

First: GORGEOUS area, amazing people, amazing friends, and did I mention gorgeous? I love colorado, and it will ALWAYS be my home state. Honestly one of the more beautiful places in the world.

Health: Frank Accurso, one of the top CF docs in the country practices out of Denver Childrens. It is a peds clinic, yes, but tons of adults go there (some quite well-known in the CF world, but would not want to invade their privacy so will not name names). He is the lead researcher on the Vertex study for the entire CFF, and others as well. If you have EVER wanted to be part of a clinic where the action is, this is your place. He is AMAZING. Many of us left him when we became adults and then went back b/c he was so amazing. I used to fly in from ATL for clinics. Another person I know flies in from TX, another from AZ, and another from Montana. Despite it all, he is always able to see you when ill, his staff and nurses are awesome, etc. Denver also has an amazing tx team if you ever need it. I would fly back from NYC to Denver for care without hesitation but for the fact that the doctor he recommended for me here is equally amazing. I promise you that you CF health will not suffer (and may well benefit) from a move to this clinic.

National Jewish I have also heard good things about, but I never considered switching even for an instant.
 
N

NYCLawGirl

New member
I lived in Colorado Springs for the first 15 years of my life and in Denver from 15-18, but even after I moved to Atlanta for college I was seen at Denver Childrens CF center (parents still live there as well).

First: GORGEOUS area, amazing people, amazing friends, and did I mention gorgeous? I love colorado, and it will ALWAYS be my home state. Honestly one of the more beautiful places in the world.

Health: Frank Accurso, one of the top CF docs in the country practices out of Denver Childrens. It is a peds clinic, yes, but tons of adults go there (some quite well-known in the CF world, but would not want to invade their privacy so will not name names). He is the lead researcher on the Vertex study for the entire CFF, and others as well. If you have EVER wanted to be part of a clinic where the action is, this is your place. He is AMAZING. Many of us left him when we became adults and then went back b/c he was so amazing. I used to fly in from ATL for clinics. Another person I know flies in from TX, another from AZ, and another from Montana. Despite it all, he is always able to see you when ill, his staff and nurses are awesome, etc. Denver also has an amazing tx team if you ever need it. I would fly back from NYC to Denver for care without hesitation but for the fact that the doctor he recommended for me here is equally amazing. I promise you that you CF health will not suffer (and may well benefit) from a move to this clinic.

National Jewish I have also heard good things about, but I never considered switching even for an instant.
 
N

NYCLawGirl

New member
I lived in Colorado Springs for the first 15 years of my life and in Denver from 15-18, but even after I moved to Atlanta for college I was seen at Denver Childrens CF center (parents still live there as well).
<br />
<br />First: GORGEOUS area, amazing people, amazing friends, and did I mention gorgeous? I love colorado, and it will ALWAYS be my home state. Honestly one of the more beautiful places in the world.
<br />
<br />Health: Frank Accurso, one of the top CF docs in the country practices out of Denver Childrens. It is a peds clinic, yes, but tons of adults go there (some quite well-known in the CF world, but would not want to invade their privacy so will not name names). He is the lead researcher on the Vertex study for the entire CFF, and others as well. If you have EVER wanted to be part of a clinic where the action is, this is your place. He is AMAZING. Many of us left him when we became adults and then went back b/c he was so amazing. I used to fly in from ATL for clinics. Another person I know flies in from TX, another from AZ, and another from Montana. Despite it all, he is always able to see you when ill, his staff and nurses are awesome, etc. Denver also has an amazing tx team if you ever need it. I would fly back from NYC to Denver for care without hesitation but for the fact that the doctor he recommended for me here is equally amazing. I promise you that you CF health will not suffer (and may well benefit) from a move to this clinic.
<br />
<br />National Jewish I have also heard good things about, but I never considered switching even for an instant.
 
6

65rosessamurai

Guest
If you choose Colorado Springs, you might come across my Sister!

As for the rest, sorry I cannot help with that, I'm not military (just a wannabe <img src="i/expressions/face-icon-small-sad.gif" border="0"> )
 
6

65rosessamurai

Guest
If you choose Colorado Springs, you might come across my Sister!

As for the rest, sorry I cannot help with that, I'm not military (just a wannabe <img src="i/expressions/face-icon-small-sad.gif" border="0"> )
 
6

65rosessamurai

Guest
If you choose Colorado Springs, you might come across my Sister!

As for the rest, sorry I cannot help with that, I'm not military (just a wannabe <img src="i/expressions/face-icon-small-sad.gif" border="0"> )
 
6

65rosessamurai

Guest
If you choose Colorado Springs, you might come across my Sister!

As for the rest, sorry I cannot help with that, I'm not military (just a wannabe <img src="i/expressions/face-icon-small-sad.gif" border="0"> )
 
6

65rosessamurai

Guest
If you choose Colorado Springs, you might come across my Sister!
<br />
<br />As for the rest, sorry I cannot help with that, I'm not military (just a wannabe <img src="i/expressions/face-icon-small-sad.gif" border="0"> )
 
N

NYCLawGirl

New member
Forgot to answer your actual questions. Duh.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?
Denver Childrens - amazing

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?
Aboslutely, but they often started thin the hospital. Depends on the situation and the patient.

3. How was the air quality in the city you lived in?
Thin (high altitude) but great quality. Actually used to be a TB sanctuary waaaay back when b/c people with lung problems tend to fare really well in the thin, dry air.

4. How did the weather affect your CF in the city you lived in?
Didn't, but then again CO has all 4 seasons, so weather changes a lot.

5. How close did you live to the city with the CF center?
Actual Center is in Denver, but the docs do clinics in the hospital in the Springs too. Or used to anyway, not sure now.

6. Was it a large center, i.e. over 150+ patients, or relatively small?
Pretty large, don't know actual number.

7. Did they listen to you and include you in decision-making and treat you with respect?
Always, but I was also a kid. After I "came of age" I had more say. My Dr was ALWASY respectful.

8. Did your center offer clinical trials?
Lead center in the US for many of them.

9. Did your center have a lung transplant center?
Yes.

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?
I had my doc's home, pager, and cell numbers, as well as direct lines for the RNs. I never had to schedule appts through the receptionist. Not once.
 
N

NYCLawGirl

New member
Forgot to answer your actual questions. Duh.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?
Denver Childrens - amazing

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?
Aboslutely, but they often started thin the hospital. Depends on the situation and the patient.

3. How was the air quality in the city you lived in?
Thin (high altitude) but great quality. Actually used to be a TB sanctuary waaaay back when b/c people with lung problems tend to fare really well in the thin, dry air.

4. How did the weather affect your CF in the city you lived in?
Didn't, but then again CO has all 4 seasons, so weather changes a lot.

5. How close did you live to the city with the CF center?
Actual Center is in Denver, but the docs do clinics in the hospital in the Springs too. Or used to anyway, not sure now.

6. Was it a large center, i.e. over 150+ patients, or relatively small?
Pretty large, don't know actual number.

7. Did they listen to you and include you in decision-making and treat you with respect?
Always, but I was also a kid. After I "came of age" I had more say. My Dr was ALWASY respectful.

8. Did your center offer clinical trials?
Lead center in the US for many of them.

9. Did your center have a lung transplant center?
Yes.

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?
I had my doc's home, pager, and cell numbers, as well as direct lines for the RNs. I never had to schedule appts through the receptionist. Not once.
 
N

NYCLawGirl

New member
Forgot to answer your actual questions. Duh.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?
Denver Childrens - amazing

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?
Aboslutely, but they often started thin the hospital. Depends on the situation and the patient.

3. How was the air quality in the city you lived in?
Thin (high altitude) but great quality. Actually used to be a TB sanctuary waaaay back when b/c people with lung problems tend to fare really well in the thin, dry air.

4. How did the weather affect your CF in the city you lived in?
Didn't, but then again CO has all 4 seasons, so weather changes a lot.

5. How close did you live to the city with the CF center?
Actual Center is in Denver, but the docs do clinics in the hospital in the Springs too. Or used to anyway, not sure now.

6. Was it a large center, i.e. over 150+ patients, or relatively small?
Pretty large, don't know actual number.

7. Did they listen to you and include you in decision-making and treat you with respect?
Always, but I was also a kid. After I "came of age" I had more say. My Dr was ALWASY respectful.

8. Did your center offer clinical trials?
Lead center in the US for many of them.

9. Did your center have a lung transplant center?
Yes.

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?
I had my doc's home, pager, and cell numbers, as well as direct lines for the RNs. I never had to schedule appts through the receptionist. Not once.
 
N

NYCLawGirl

New member
Forgot to answer your actual questions. Duh.

1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?
Denver Childrens - amazing

2. Did they allow you to do home health for clean outs or were you required to stay inpatient?
Aboslutely, but they often started thin the hospital. Depends on the situation and the patient.

3. How was the air quality in the city you lived in?
Thin (high altitude) but great quality. Actually used to be a TB sanctuary waaaay back when b/c people with lung problems tend to fare really well in the thin, dry air.

4. How did the weather affect your CF in the city you lived in?
Didn't, but then again CO has all 4 seasons, so weather changes a lot.

5. How close did you live to the city with the CF center?
Actual Center is in Denver, but the docs do clinics in the hospital in the Springs too. Or used to anyway, not sure now.

6. Was it a large center, i.e. over 150+ patients, or relatively small?
Pretty large, don't know actual number.

7. Did they listen to you and include you in decision-making and treat you with respect?
Always, but I was also a kid. After I "came of age" I had more say. My Dr was ALWASY respectful.

8. Did your center offer clinical trials?
Lead center in the US for many of them.

9. Did your center have a lung transplant center?
Yes.

10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?
I had my doc's home, pager, and cell numbers, as well as direct lines for the RNs. I never had to schedule appts through the receptionist. Not once.
 
N

NYCLawGirl

New member
Forgot to answer your actual questions. Duh.
<br />
<br />1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?
<br />Denver Childrens - amazing
<br />
<br />2. Did they allow you to do home health for clean outs or were you required to stay inpatient?
<br />Aboslutely, but they often started thin the hospital. Depends on the situation and the patient.
<br />
<br />3. How was the air quality in the city you lived in?
<br />Thin (high altitude) but great quality. Actually used to be a TB sanctuary waaaay back when b/c people with lung problems tend to fare really well in the thin, dry air.
<br />
<br />4. How did the weather affect your CF in the city you lived in?
<br />Didn't, but then again CO has all 4 seasons, so weather changes a lot.
<br />
<br />5. How close did you live to the city with the CF center?
<br />Actual Center is in Denver, but the docs do clinics in the hospital in the Springs too. Or used to anyway, not sure now.
<br />
<br />6. Was it a large center, i.e. over 150+ patients, or relatively small?
<br />Pretty large, don't know actual number.
<br />
<br />7. Did they listen to you and include you in decision-making and treat you with respect?
<br />Always, but I was also a kid. After I "came of age" I had more say. My Dr was ALWASY respectful.
<br />
<br />8. Did your center offer clinical trials?
<br />Lead center in the US for many of them.
<br />
<br />9. Did your center have a lung transplant center?
<br />Yes.
<br />
<br />10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?
<br />I had my doc's home, pager, and cell numbers, as well as direct lines for the RNs. I never had to schedule appts through the receptionist. Not once.
<br />
 
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