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krisgabes
03-02-2010, 08:21 PM
Hello everyone,

I've been looking into a CF clinic that I can go to in order to get a second opinion, like a full work up. I've been a bit disappointed with the one I go to, so I'd like to see a new CF doctor. We're looking for the best of the best. If anyone can give their opinions it would help. We're looking into John Hopkins right now, does anyone attend their clinic?

krisgabes
03-02-2010, 08:21 PM
Hello everyone,

I've been looking into a CF clinic that I can go to in order to get a second opinion, like a full work up. I've been a bit disappointed with the one I go to, so I'd like to see a new CF doctor. We're looking for the best of the best. If anyone can give their opinions it would help. We're looking into John Hopkins right now, does anyone attend their clinic?

krisgabes
03-02-2010, 08:21 PM
Hello everyone,

I've been looking into a CF clinic that I can go to in order to get a second opinion, like a full work up. I've been a bit disappointed with the one I go to, so I'd like to see a new CF doctor. We're looking for the best of the best. If anyone can give their opinions it would help. We're looking into John Hopkins right now, does anyone attend their clinic?

krisgabes
03-02-2010, 08:21 PM
Hello everyone,

I've been looking into a CF clinic that I can go to in order to get a second opinion, like a full work up. I've been a bit disappointed with the one I go to, so I'd like to see a new CF doctor. We're looking for the best of the best. If anyone can give their opinions it would help. We're looking into John Hopkins right now, does anyone attend their clinic?

krisgabes
03-02-2010, 08:21 PM
Hello everyone,
<br />
<br />I've been looking into a CF clinic that I can go to in order to get a second opinion, like a full work up. I've been a bit disappointed with the one I go to, so I'd like to see a new CF doctor. We're looking for the best of the best. If anyone can give their opinions it would help. We're looking into John Hopkins right now, does anyone attend their clinic?

falbie13
03-02-2010, 10:13 PM
I have gone to JHU my entire life. The adult program is great. The doctors, nurse practitioner, nurse, dietician, and physical therapists are wonderful! They treat everyone as an individual, not just a person with a disease. They develop an individual treatment plan for each person. I would def. recommend JHUs adult program!

falbie13
03-02-2010, 10:13 PM
I have gone to JHU my entire life. The adult program is great. The doctors, nurse practitioner, nurse, dietician, and physical therapists are wonderful! They treat everyone as an individual, not just a person with a disease. They develop an individual treatment plan for each person. I would def. recommend JHUs adult program!

falbie13
03-02-2010, 10:13 PM
I have gone to JHU my entire life. The adult program is great. The doctors, nurse practitioner, nurse, dietician, and physical therapists are wonderful! They treat everyone as an individual, not just a person with a disease. They develop an individual treatment plan for each person. I would def. recommend JHUs adult program!

falbie13
03-02-2010, 10:13 PM
I have gone to JHU my entire life. The adult program is great. The doctors, nurse practitioner, nurse, dietician, and physical therapists are wonderful! They treat everyone as an individual, not just a person with a disease. They develop an individual treatment plan for each person. I would def. recommend JHUs adult program!

falbie13
03-02-2010, 10:13 PM
I have gone to JHU my entire life. The adult program is great. The doctors, nurse practitioner, nurse, dietician, and physical therapists are wonderful! They treat everyone as an individual, not just a person with a disease. They develop an individual treatment plan for each person. I would def. recommend JHUs adult program!

2cfers
03-02-2010, 11:16 PM
We changed clinics back in October after 4 years at our previous clinic. That was the clinic we had been at since diagnosis. It was the best thing we ever did. I was so upset and frustrated everytime we went and I dreaded clinic visits for 2 weeks before we had to go. I got stressed and anxious when we had to go also. We have 2 children with CF so it was very frustrating every time.

We went to the new clinic and are in heaven. I do not dread clinic visits anymore and feel good and satisfied when we leave. We have had 2 visits at this clinic and several phone calls back and forth with the clinic and are very happy.

Go with your gut no one will fault you for getting another opinion.


Christy

2cfers
03-02-2010, 11:16 PM
We changed clinics back in October after 4 years at our previous clinic. That was the clinic we had been at since diagnosis. It was the best thing we ever did. I was so upset and frustrated everytime we went and I dreaded clinic visits for 2 weeks before we had to go. I got stressed and anxious when we had to go also. We have 2 children with CF so it was very frustrating every time.

We went to the new clinic and are in heaven. I do not dread clinic visits anymore and feel good and satisfied when we leave. We have had 2 visits at this clinic and several phone calls back and forth with the clinic and are very happy.

Go with your gut no one will fault you for getting another opinion.


Christy

2cfers
03-02-2010, 11:16 PM
We changed clinics back in October after 4 years at our previous clinic. That was the clinic we had been at since diagnosis. It was the best thing we ever did. I was so upset and frustrated everytime we went and I dreaded clinic visits for 2 weeks before we had to go. I got stressed and anxious when we had to go also. We have 2 children with CF so it was very frustrating every time.

We went to the new clinic and are in heaven. I do not dread clinic visits anymore and feel good and satisfied when we leave. We have had 2 visits at this clinic and several phone calls back and forth with the clinic and are very happy.

Go with your gut no one will fault you for getting another opinion.


Christy

2cfers
03-02-2010, 11:16 PM
We changed clinics back in October after 4 years at our previous clinic. That was the clinic we had been at since diagnosis. It was the best thing we ever did. I was so upset and frustrated everytime we went and I dreaded clinic visits for 2 weeks before we had to go. I got stressed and anxious when we had to go also. We have 2 children with CF so it was very frustrating every time.

We went to the new clinic and are in heaven. I do not dread clinic visits anymore and feel good and satisfied when we leave. We have had 2 visits at this clinic and several phone calls back and forth with the clinic and are very happy.

Go with your gut no one will fault you for getting another opinion.


Christy

2cfers
03-02-2010, 11:16 PM
We changed clinics back in October after 4 years at our previous clinic. That was the clinic we had been at since diagnosis. It was the best thing we ever did. I was so upset and frustrated everytime we went and I dreaded clinic visits for 2 weeks before we had to go. I got stressed and anxious when we had to go also. We have 2 children with CF so it was very frustrating every time.
<br />
<br />We went to the new clinic and are in heaven. I do not dread clinic visits anymore and feel good and satisfied when we leave. We have had 2 visits at this clinic and several phone calls back and forth with the clinic and are very happy.
<br />
<br />Go with your gut no one will fault you for getting another opinion.
<br />
<br />
<br />Christy

crickit715
03-03-2010, 01:35 AM
i switched to hopkins last year and have not regretted it...the drive is alot longer but i feel she is getting the best care she can get..if you have any questions please feel free to pm me!! ricki

crickit715
03-03-2010, 01:35 AM
i switched to hopkins last year and have not regretted it...the drive is alot longer but i feel she is getting the best care she can get..if you have any questions please feel free to pm me!! ricki

crickit715
03-03-2010, 01:35 AM
i switched to hopkins last year and have not regretted it...the drive is alot longer but i feel she is getting the best care she can get..if you have any questions please feel free to pm me!! ricki

crickit715
03-03-2010, 01:35 AM
i switched to hopkins last year and have not regretted it...the drive is alot longer but i feel she is getting the best care she can get..if you have any questions please feel free to pm me!! ricki

crickit715
03-03-2010, 01:35 AM
i switched to hopkins last year and have not regretted it...the drive is alot longer but i feel she is getting the best care she can get..if you have any questions please feel free to pm me!! ricki

krisgabes
03-03-2010, 01:38 AM
Those are the exact emotions I feel like when I have to go to my own clinic. The past 2 years I have been feeling symptoms of whatever mystery is going on in my body, researching what it could possibly be on mayoclinic.com or webmd, posting on here to see if anyone else has the same issue or have had the same issues in the past, then I present the diagnosis to the doctor who always seems to agree THEN treat.

So I've pretty much been my own CF doctor. It's very discouraging. I've been suffering from breathing difficulties for weeks and they just put me on IV's again after a brief break from my previous 8 week stint. I posted on here the other day asking about breathing difficulty at night, and after someone stated they have had the same in the past and suggested an oxygen test at night. I presented it to my doctor and THEN he ordered it. He would not have ordered it otherwise, even after I presented the same symptoms to him last week.

It's really an awful feeling. Thank you SO much for your help!

krisgabes
03-03-2010, 01:38 AM
Those are the exact emotions I feel like when I have to go to my own clinic. The past 2 years I have been feeling symptoms of whatever mystery is going on in my body, researching what it could possibly be on mayoclinic.com or webmd, posting on here to see if anyone else has the same issue or have had the same issues in the past, then I present the diagnosis to the doctor who always seems to agree THEN treat.

So I've pretty much been my own CF doctor. It's very discouraging. I've been suffering from breathing difficulties for weeks and they just put me on IV's again after a brief break from my previous 8 week stint. I posted on here the other day asking about breathing difficulty at night, and after someone stated they have had the same in the past and suggested an oxygen test at night. I presented it to my doctor and THEN he ordered it. He would not have ordered it otherwise, even after I presented the same symptoms to him last week.

It's really an awful feeling. Thank you SO much for your help!

krisgabes
03-03-2010, 01:38 AM
Those are the exact emotions I feel like when I have to go to my own clinic. The past 2 years I have been feeling symptoms of whatever mystery is going on in my body, researching what it could possibly be on mayoclinic.com or webmd, posting on here to see if anyone else has the same issue or have had the same issues in the past, then I present the diagnosis to the doctor who always seems to agree THEN treat.

So I've pretty much been my own CF doctor. It's very discouraging. I've been suffering from breathing difficulties for weeks and they just put me on IV's again after a brief break from my previous 8 week stint. I posted on here the other day asking about breathing difficulty at night, and after someone stated they have had the same in the past and suggested an oxygen test at night. I presented it to my doctor and THEN he ordered it. He would not have ordered it otherwise, even after I presented the same symptoms to him last week.

It's really an awful feeling. Thank you SO much for your help!

krisgabes
03-03-2010, 01:38 AM
Those are the exact emotions I feel like when I have to go to my own clinic. The past 2 years I have been feeling symptoms of whatever mystery is going on in my body, researching what it could possibly be on mayoclinic.com or webmd, posting on here to see if anyone else has the same issue or have had the same issues in the past, then I present the diagnosis to the doctor who always seems to agree THEN treat.

So I've pretty much been my own CF doctor. It's very discouraging. I've been suffering from breathing difficulties for weeks and they just put me on IV's again after a brief break from my previous 8 week stint. I posted on here the other day asking about breathing difficulty at night, and after someone stated they have had the same in the past and suggested an oxygen test at night. I presented it to my doctor and THEN he ordered it. He would not have ordered it otherwise, even after I presented the same symptoms to him last week.

It's really an awful feeling. Thank you SO much for your help!

krisgabes
03-03-2010, 01:38 AM
Those are the exact emotions I feel like when I have to go to my own clinic. The past 2 years I have been feeling symptoms of whatever mystery is going on in my body, researching what it could possibly be on mayoclinic.com or webmd, posting on here to see if anyone else has the same issue or have had the same issues in the past, then I present the diagnosis to the doctor who always seems to agree THEN treat.
<br />
<br />So I've pretty much been my own CF doctor. It's very discouraging. I've been suffering from breathing difficulties for weeks and they just put me on IV's again after a brief break from my previous 8 week stint. I posted on here the other day asking about breathing difficulty at night, and after someone stated they have had the same in the past and suggested an oxygen test at night. I presented it to my doctor and THEN he ordered it. He would not have ordered it otherwise, even after I presented the same symptoms to him last week.
<br />
<br />It's really an awful feeling. Thank you SO much for your help!

janddburke
03-04-2010, 10:24 AM
There is no downside. Get your second (or third) opinion. You might find you like this doctor/team much better and you might even find a new respect for your old team. how will you know?
Go for it. you'll feel much better (emotionally and hopefully physically)

janddburke
03-04-2010, 10:24 AM
There is no downside. Get your second (or third) opinion. You might find you like this doctor/team much better and you might even find a new respect for your old team. how will you know?
Go for it. you'll feel much better (emotionally and hopefully physically)

janddburke
03-04-2010, 10:24 AM
There is no downside. Get your second (or third) opinion. You might find you like this doctor/team much better and you might even find a new respect for your old team. how will you know?
Go for it. you'll feel much better (emotionally and hopefully physically)

janddburke
03-04-2010, 10:24 AM
There is no downside. Get your second (or third) opinion. You might find you like this doctor/team much better and you might even find a new respect for your old team. how will you know?
Go for it. you'll feel much better (emotionally and hopefully physically)

janddburke
03-04-2010, 10:24 AM
There is no downside. Get your second (or third) opinion. You might find you like this doctor/team much better and you might even find a new respect for your old team. how will you know?
<br />Go for it. you'll feel much better (emotionally and hopefully physically)

MaksNana
03-13-2010, 11:27 PM
I don't think it hurts anything at all to get a second opinion. I have done it. It can ruffle some of the doctors feathers, which is sad. You should have the right to get as many as you would like without it being a problem........

Please keep me in touch on how it goes. I'm always open for better care, especially with the way things have been going lately with Maks health.

Looking forward to hear from you,,,,,,Karla

MaksNana
03-13-2010, 11:27 PM
I don't think it hurts anything at all to get a second opinion. I have done it. It can ruffle some of the doctors feathers, which is sad. You should have the right to get as many as you would like without it being a problem........

Please keep me in touch on how it goes. I'm always open for better care, especially with the way things have been going lately with Maks health.

Looking forward to hear from you,,,,,,Karla

MaksNana
03-13-2010, 11:27 PM
I don't think it hurts anything at all to get a second opinion. I have done it. It can ruffle some of the doctors feathers, which is sad. You should have the right to get as many as you would like without it being a problem........

Please keep me in touch on how it goes. I'm always open for better care, especially with the way things have been going lately with Maks health.

Looking forward to hear from you,,,,,,Karla

MaksNana
03-13-2010, 11:27 PM
I don't think it hurts anything at all to get a second opinion. I have done it. It can ruffle some of the doctors feathers, which is sad. You should have the right to get as many as you would like without it being a problem........

Please keep me in touch on how it goes. I'm always open for better care, especially with the way things have been going lately with Maks health.

Looking forward to hear from you,,,,,,Karla

MaksNana
03-13-2010, 11:27 PM
I don't think it hurts anything at all to get a second opinion. I have done it. It can ruffle some of the doctors feathers, which is sad. You should have the right to get as many as you would like without it being a problem........
<br />
<br />Please keep me in touch on how it goes. I'm always open for better care, especially with the way things have been going lately with Maks health.
<br />
<br />Looking forward to hear from you,,,,,,Karla

chrissyd
03-16-2010, 01:43 AM
I'm in a study at NIH in Bethesda; but I have heard good things about Hopkins. You should feel comfortable...

I hope it works out!

chrissyd
03-16-2010, 01:43 AM
I'm in a study at NIH in Bethesda; but I have heard good things about Hopkins. You should feel comfortable...

I hope it works out!

chrissyd
03-16-2010, 01:43 AM
I'm in a study at NIH in Bethesda; but I have heard good things about Hopkins. You should feel comfortable...

I hope it works out!

chrissyd
03-16-2010, 01:43 AM
I'm in a study at NIH in Bethesda; but I have heard good things about Hopkins. You should feel comfortable...

I hope it works out!

chrissyd
03-16-2010, 01:43 AM
I'm in a study at NIH in Bethesda; but I have heard good things about Hopkins. You should feel comfortable...
<br />
<br />I hope it works out!

krisgabes
03-16-2010, 02:37 AM
Thank you! I'll post up when its all done <img src="i/expressions/face-icon-small-smile.gif" border="0">

krisgabes
03-16-2010, 02:37 AM
Thank you! I'll post up when its all done <img src="i/expressions/face-icon-small-smile.gif" border="0">

krisgabes
03-16-2010, 02:37 AM
Thank you! I'll post up when its all done <img src="i/expressions/face-icon-small-smile.gif" border="0">

krisgabes
03-16-2010, 02:37 AM
Thank you! I'll post up when its all done <img src="i/expressions/face-icon-small-smile.gif" border="0">

krisgabes
03-16-2010, 02:37 AM
Thank you! I'll post up when its all done <img src="i/expressions/face-icon-small-smile.gif" border="0">

dragonlady
03-16-2010, 11:18 PM
My daughter goes to the CF Clinic at Johns Hopkins. She's not at the adult stage yet, but we have been there for about five years now and we really like it.

The staff is great.

dragonlady
03-16-2010, 11:18 PM
My daughter goes to the CF Clinic at Johns Hopkins. She's not at the adult stage yet, but we have been there for about five years now and we really like it.

The staff is great.

dragonlady
03-16-2010, 11:18 PM
My daughter goes to the CF Clinic at Johns Hopkins. She's not at the adult stage yet, but we have been there for about five years now and we really like it.

The staff is great.

dragonlady
03-16-2010, 11:18 PM
My daughter goes to the CF Clinic at Johns Hopkins. She's not at the adult stage yet, but we have been there for about five years now and we really like it.

The staff is great.

dragonlady
03-16-2010, 11:18 PM
My daughter goes to the CF Clinic at Johns Hopkins. She's not at the adult stage yet, but we have been there for about five years now and we really like it.
<br />
<br />The staff is great.

hmw
03-17-2010, 02:00 AM
I'm interested in hearing about any experiences I can about the ped. program at Hopkins. I am not interested at all in switching clinics (I love ours! ...and this place is 5hrs from us anyway), but my son will be having a workup there in addition to nasal potential difference testing once insurance goes through... so knowing as much as I can about what to expect would be great. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw
03-17-2010, 02:00 AM
I'm interested in hearing about any experiences I can about the ped. program at Hopkins. I am not interested at all in switching clinics (I love ours! ...and this place is 5hrs from us anyway), but my son will be having a workup there in addition to nasal potential difference testing once insurance goes through... so knowing as much as I can about what to expect would be great. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw
03-17-2010, 02:00 AM
I'm interested in hearing about any experiences I can about the ped. program at Hopkins. I am not interested at all in switching clinics (I love ours! ...and this place is 5hrs from us anyway), but my son will be having a workup there in addition to nasal potential difference testing once insurance goes through... so knowing as much as I can about what to expect would be great. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw
03-17-2010, 02:00 AM
I'm interested in hearing about any experiences I can about the ped. program at Hopkins. I am not interested at all in switching clinics (I love ours! ...and this place is 5hrs from us anyway), but my son will be having a workup there in addition to nasal potential difference testing once insurance goes through... so knowing as much as I can about what to expect would be great. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw
03-17-2010, 02:00 AM
I'm interested in hearing about any experiences I can about the ped. program at Hopkins. I am not interested at all in switching clinics (I love ours! ...and this place is 5hrs from us anyway), but my son will be having a workup there in addition to nasal potential difference testing once insurance goes through... so knowing as much as I can about what to expect would be great. <img src="i/expressions/face-icon-small-smile.gif" border="0">