Not Impressed with Adult Clinic In Columbia

[JennifersHope]

I made contact with the "adult CF clinic" in Columbia today.. I called the office and I knew it was a bad sign when the receptionist sounded annoyed with my call, She didn't know about any CF doctor and she had to ask someone else about it..

Apparently it isn't a clinic like I am used to with a whole team approach, CF nurse, RT, DR, Social Worker etc.. It is a doctor who is a pulmo that sees CF patients. I got put to a nurses voice mail with no return call as of yet...

I am so happy with my CF team that I have now, I don't think anyone is going to be as good as them, and they did say that I can still use them as needed and come up to NJ for my visits...

I am not to worried though because my current CF doctor said the clinic in Charlston was really really good and that is only going to be a few hours from my house.. so if need be that is what I will do.... I don't know..I did call the clinic in Charlston and they sounded a little more along the lines of what I am used to, except that the machine said if you have a problem page Pulmo on call..

I currently have direct access to every member on my team, day or night, weekday or weekend.. and they get back to me right away.....and never bounce me to "on call anyone"

I think I may just have to find a doctor in my area that is good at managing me and keep my team up here for the really CF stuff...

Do you guys normally have direct access to your whole team? and also, do you guys all have a team of people you see? or do you go to a local doctors office?

 

[JennifersHope]

I made contact with the "adult CF clinic" in Columbia today.. I called the office and I knew it was a bad sign when the receptionist sounded annoyed with my call, She didn't know about any CF doctor and she had to ask someone else about it..

Apparently it isn't a clinic like I am used to with a whole team approach, CF nurse, RT, DR, Social Worker etc.. It is a doctor who is a pulmo that sees CF patients. I got put to a nurses voice mail with no return call as of yet...

I am so happy with my CF team that I have now, I don't think anyone is going to be as good as them, and they did say that I can still use them as needed and come up to NJ for my visits...

I am not to worried though because my current CF doctor said the clinic in Charlston was really really good and that is only going to be a few hours from my house.. so if need be that is what I will do.... I don't know..I did call the clinic in Charlston and they sounded a little more along the lines of what I am used to, except that the machine said if you have a problem page Pulmo on call..

I currently have direct access to every member on my team, day or night, weekday or weekend.. and they get back to me right away.....and never bounce me to "on call anyone"

I think I may just have to find a doctor in my area that is good at managing me and keep my team up here for the really CF stuff...

Do you guys normally have direct access to your whole team? and also, do you guys all have a team of people you see? or do you go to a local doctors office?

 

[JennifersHope]

I made contact with the "adult CF clinic" in Columbia today.. I called the office and I knew it was a bad sign when the receptionist sounded annoyed with my call, She didn't know about any CF doctor and she had to ask someone else about it..

Apparently it isn't a clinic like I am used to with a whole team approach, CF nurse, RT, DR, Social Worker etc.. It is a doctor who is a pulmo that sees CF patients. I got put to a nurses voice mail with no return call as of yet...

I am so happy with my CF team that I have now, I don't think anyone is going to be as good as them, and they did say that I can still use them as needed and come up to NJ for my visits...

I am not to worried though because my current CF doctor said the clinic in Charlston was really really good and that is only going to be a few hours from my house.. so if need be that is what I will do.... I don't know..I did call the clinic in Charlston and they sounded a little more along the lines of what I am used to, except that the machine said if you have a problem page Pulmo on call..

I currently have direct access to every member on my team, day or night, weekday or weekend.. and they get back to me right away.....and never bounce me to "on call anyone"

I think I may just have to find a doctor in my area that is good at managing me and keep my team up here for the really CF stuff...

Do you guys normally have direct access to your whole team? and also, do you guys all have a team of people you see? or do you go to a local doctors office?

 

[JennifersHope]

I made contact with the "adult CF clinic" in Columbia today.. I called the office and I knew it was a bad sign when the receptionist sounded annoyed with my call, She didn't know about any CF doctor and she had to ask someone else about it..

Apparently it isn't a clinic like I am used to with a whole team approach, CF nurse, RT, DR, Social Worker etc.. It is a doctor who is a pulmo that sees CF patients. I got put to a nurses voice mail with no return call as of yet...

I am so happy with my CF team that I have now, I don't think anyone is going to be as good as them, and they did say that I can still use them as needed and come up to NJ for my visits...

I am not to worried though because my current CF doctor said the clinic in Charlston was really really good and that is only going to be a few hours from my house.. so if need be that is what I will do.... I don't know..I did call the clinic in Charlston and they sounded a little more along the lines of what I am used to, except that the machine said if you have a problem page Pulmo on call..

I currently have direct access to every member on my team, day or night, weekday or weekend.. and they get back to me right away.....and never bounce me to "on call anyone"

I think I may just have to find a doctor in my area that is good at managing me and keep my team up here for the really CF stuff...

Do you guys normally have direct access to your whole team? and also, do you guys all have a team of people you see? or do you go to a local doctors office?

 

[JennifersHope]

I made contact with the "adult CF clinic" in Columbia today.. I called the office and I knew it was a bad sign when the receptionist sounded annoyed with my call, She didn't know about any CF doctor and she had to ask someone else about it..

Apparently it isn't a clinic like I am used to with a whole team approach, CF nurse, RT, DR, Social Worker etc.. It is a doctor who is a pulmo that sees CF patients. I got put to a nurses voice mail with no return call as of yet...

I am so happy with my CF team that I have now, I don't think anyone is going to be as good as them, and they did say that I can still use them as needed and come up to NJ for my visits...

I am not to worried though because my current CF doctor said the clinic in Charlston was really really good and that is only going to be a few hours from my house.. so if need be that is what I will do.... I don't know..I did call the clinic in Charlston and they sounded a little more along the lines of what I am used to, except that the machine said if you have a problem page Pulmo on call..

I currently have direct access to every member on my team, day or night, weekday or weekend.. and they get back to me right away.....and never bounce me to "on call anyone"

I think I may just have to find a doctor in my area that is good at managing me and keep my team up here for the really CF stuff...

Do you guys normally have direct access to your whole team? and also, do you guys all have a team of people you see? or do you go to a local doctors office?

 

[JennifersHope]

I made contact with the "adult CF clinic" in Columbia today.. I called the office and I knew it was a bad sign when the receptionist sounded annoyed with my call, She didn't know about any CF doctor and she had to ask someone else about it..

Apparently it isn't a clinic like I am used to with a whole team approach, CF nurse, RT, DR, Social Worker etc.. It is a doctor who is a pulmo that sees CF patients. I got put to a nurses voice mail with no return call as of yet...

I am so happy with my CF team that I have now, I don't think anyone is going to be as good as them, and they did say that I can still use them as needed and come up to NJ for my visits...

I am not to worried though because my current CF doctor said the clinic in Charlston was really really good and that is only going to be a few hours from my house.. so if need be that is what I will do.... I don't know..I did call the clinic in Charlston and they sounded a little more along the lines of what I am used to, except that the machine said if you have a problem page Pulmo on call..

I currently have direct access to every member on my team, day or night, weekday or weekend.. and they get back to me right away.....and never bounce me to "on call anyone"

I think I may just have to find a doctor in my area that is good at managing me and keep my team up here for the really CF stuff...

Do you guys normally have direct access to your whole team? and also, do you guys all have a team of people you see? or do you go to a local doctors office?

 

[lightNlife]

It was a tough transition for me going from one clinic to the next. I had been going to the same CF Team Clinic for about 17 years, so they knew me inside and out (which is great with CF!) I'm still "training" my new clinic about all the loveliness of being me. It has been difficult. I've learned that it's even more important for me now to be extremely proactive about my own health care.

My nurse coordinator at the clinic is the only one I have access to other than calling the hospital and asking to have the CF on-call doctor paged. My clinic does not have all the bells and whistles (GI specialist, nutritionist, RT and social worker) that I had grown accustomed to at the other place. My doc does a great job, but he's only one guy. There are days when I honestly worry about whether I'm getting the highest quality of care available. Whatever energy and effort he and his nurse have is spread thinly over 100+ patients.

I would love to see things improve at the clinic. I thought that the CFF had some role in making sure a clinic was well kept up, but I was mistaken. The CFF's primary focus is funding research. The amount of $ that they give to clinics is, in some cases less than the amount it would take simply to have a part-time receptionist available to take calls.

I hope you are able to find a place that's a good fit for you. In my own opinion, "if it'll keep you alive, it's worth the drive!" If going to NJ or elsewhere for your treatment will enhance your quality of life, then don't waste time trying to get to know a new clinic. I know that can be difficult depending on insurance and stuff. I'll be praying that you get what you need.

-Lauren

 

[lightNlife]

It was a tough transition for me going from one clinic to the next. I had been going to the same CF Team Clinic for about 17 years, so they knew me inside and out (which is great with CF!) I'm still "training" my new clinic about all the loveliness of being me. It has been difficult. I've learned that it's even more important for me now to be extremely proactive about my own health care.

My nurse coordinator at the clinic is the only one I have access to other than calling the hospital and asking to have the CF on-call doctor paged. My clinic does not have all the bells and whistles (GI specialist, nutritionist, RT and social worker) that I had grown accustomed to at the other place. My doc does a great job, but he's only one guy. There are days when I honestly worry about whether I'm getting the highest quality of care available. Whatever energy and effort he and his nurse have is spread thinly over 100+ patients.

I would love to see things improve at the clinic. I thought that the CFF had some role in making sure a clinic was well kept up, but I was mistaken. The CFF's primary focus is funding research. The amount of $ that they give to clinics is, in some cases less than the amount it would take simply to have a part-time receptionist available to take calls.

I hope you are able to find a place that's a good fit for you. In my own opinion, "if it'll keep you alive, it's worth the drive!" If going to NJ or elsewhere for your treatment will enhance your quality of life, then don't waste time trying to get to know a new clinic. I know that can be difficult depending on insurance and stuff. I'll be praying that you get what you need.

-Lauren

 

[lightNlife]

It was a tough transition for me going from one clinic to the next. I had been going to the same CF Team Clinic for about 17 years, so they knew me inside and out (which is great with CF!) I'm still "training" my new clinic about all the loveliness of being me. It has been difficult. I've learned that it's even more important for me now to be extremely proactive about my own health care.

My nurse coordinator at the clinic is the only one I have access to other than calling the hospital and asking to have the CF on-call doctor paged. My clinic does not have all the bells and whistles (GI specialist, nutritionist, RT and social worker) that I had grown accustomed to at the other place. My doc does a great job, but he's only one guy. There are days when I honestly worry about whether I'm getting the highest quality of care available. Whatever energy and effort he and his nurse have is spread thinly over 100+ patients.

I would love to see things improve at the clinic. I thought that the CFF had some role in making sure a clinic was well kept up, but I was mistaken. The CFF's primary focus is funding research. The amount of $ that they give to clinics is, in some cases less than the amount it would take simply to have a part-time receptionist available to take calls.

I hope you are able to find a place that's a good fit for you. In my own opinion, "if it'll keep you alive, it's worth the drive!" If going to NJ or elsewhere for your treatment will enhance your quality of life, then don't waste time trying to get to know a new clinic. I know that can be difficult depending on insurance and stuff. I'll be praying that you get what you need.

-Lauren

 

[lightNlife]

It was a tough transition for me going from one clinic to the next. I had been going to the same CF Team Clinic for about 17 years, so they knew me inside and out (which is great with CF!) I'm still "training" my new clinic about all the loveliness of being me. It has been difficult. I've learned that it's even more important for me now to be extremely proactive about my own health care.

My nurse coordinator at the clinic is the only one I have access to other than calling the hospital and asking to have the CF on-call doctor paged. My clinic does not have all the bells and whistles (GI specialist, nutritionist, RT and social worker) that I had grown accustomed to at the other place. My doc does a great job, but he's only one guy. There are days when I honestly worry about whether I'm getting the highest quality of care available. Whatever energy and effort he and his nurse have is spread thinly over 100+ patients.

I would love to see things improve at the clinic. I thought that the CFF had some role in making sure a clinic was well kept up, but I was mistaken. The CFF's primary focus is funding research. The amount of $ that they give to clinics is, in some cases less than the amount it would take simply to have a part-time receptionist available to take calls.

I hope you are able to find a place that's a good fit for you. In my own opinion, "if it'll keep you alive, it's worth the drive!" If going to NJ or elsewhere for your treatment will enhance your quality of life, then don't waste time trying to get to know a new clinic. I know that can be difficult depending on insurance and stuff. I'll be praying that you get what you need.

-Lauren

 

[lightNlife]

It was a tough transition for me going from one clinic to the next. I had been going to the same CF Team Clinic for about 17 years, so they knew me inside and out (which is great with CF!) I'm still "training" my new clinic about all the loveliness of being me. It has been difficult. I've learned that it's even more important for me now to be extremely proactive about my own health care.

My nurse coordinator at the clinic is the only one I have access to other than calling the hospital and asking to have the CF on-call doctor paged. My clinic does not have all the bells and whistles (GI specialist, nutritionist, RT and social worker) that I had grown accustomed to at the other place. My doc does a great job, but he's only one guy. There are days when I honestly worry about whether I'm getting the highest quality of care available. Whatever energy and effort he and his nurse have is spread thinly over 100+ patients.

I would love to see things improve at the clinic. I thought that the CFF had some role in making sure a clinic was well kept up, but I was mistaken. The CFF's primary focus is funding research. The amount of $ that they give to clinics is, in some cases less than the amount it would take simply to have a part-time receptionist available to take calls.

I hope you are able to find a place that's a good fit for you. In my own opinion, "if it'll keep you alive, it's worth the drive!" If going to NJ or elsewhere for your treatment will enhance your quality of life, then don't waste time trying to get to know a new clinic. I know that can be difficult depending on insurance and stuff. I'll be praying that you get what you need.

-Lauren

 

[lightNlife]

It was a tough transition for me going from one clinic to the next. I had been going to the same CF Team Clinic for about 17 years, so they knew me inside and out (which is great with CF!) I'm still "training" my new clinic about all the loveliness of being me. It has been difficult. I've learned that it's even more important for me now to be extremely proactive about my own health care.

My nurse coordinator at the clinic is the only one I have access to other than calling the hospital and asking to have the CF on-call doctor paged. My clinic does not have all the bells and whistles (GI specialist, nutritionist, RT and social worker) that I had grown accustomed to at the other place. My doc does a great job, but he's only one guy. There are days when I honestly worry about whether I'm getting the highest quality of care available. Whatever energy and effort he and his nurse have is spread thinly over 100+ patients.

I would love to see things improve at the clinic. I thought that the CFF had some role in making sure a clinic was well kept up, but I was mistaken. The CFF's primary focus is funding research. The amount of $ that they give to clinics is, in some cases less than the amount it would take simply to have a part-time receptionist available to take calls.

I hope you are able to find a place that's a good fit for you. In my own opinion, "if it'll keep you alive, it's worth the drive!" If going to NJ or elsewhere for your treatment will enhance your quality of life, then don't waste time trying to get to know a new clinic. I know that can be difficult depending on insurance and stuff. I'll be praying that you get what you need.

-Lauren

 

[thefrogprincess]

I've had both experiences. When I was a kid our CF clinic was a 3 hour drive one way. So our local doc and CF clinic were very good about keeping each other up to date on everything. The local doc had asthma so he took it upon himself to be educated in all sorts of resperatory conditions, including CF. I felt like I was in good hands with him.

Then we moved to Seattle and the clinic is now in my backyard pretty much. So now I only my GP for non-CF stuff. But she still keeps the clinic up to date on what's going on with me. If I have to call the clinic after-hours I do get an on call person, but I can say call Dr. So-and-so, he/she is familiar with me and my history. If its during the day I talk to the nurse coordinator and she contacts whoever she needs to about me (doc, dietician, social worker).

 

[thefrogprincess]

I've had both experiences. When I was a kid our CF clinic was a 3 hour drive one way. So our local doc and CF clinic were very good about keeping each other up to date on everything. The local doc had asthma so he took it upon himself to be educated in all sorts of resperatory conditions, including CF. I felt like I was in good hands with him.

Then we moved to Seattle and the clinic is now in my backyard pretty much. So now I only my GP for non-CF stuff. But she still keeps the clinic up to date on what's going on with me. If I have to call the clinic after-hours I do get an on call person, but I can say call Dr. So-and-so, he/she is familiar with me and my history. If its during the day I talk to the nurse coordinator and she contacts whoever she needs to about me (doc, dietician, social worker).

 

[thefrogprincess]

I've had both experiences. When I was a kid our CF clinic was a 3 hour drive one way. So our local doc and CF clinic were very good about keeping each other up to date on everything. The local doc had asthma so he took it upon himself to be educated in all sorts of resperatory conditions, including CF. I felt like I was in good hands with him.

Then we moved to Seattle and the clinic is now in my backyard pretty much. So now I only my GP for non-CF stuff. But she still keeps the clinic up to date on what's going on with me. If I have to call the clinic after-hours I do get an on call person, but I can say call Dr. So-and-so, he/she is familiar with me and my history. If its during the day I talk to the nurse coordinator and she contacts whoever she needs to about me (doc, dietician, social worker).

 

[thefrogprincess]

I've had both experiences. When I was a kid our CF clinic was a 3 hour drive one way. So our local doc and CF clinic were very good about keeping each other up to date on everything. The local doc had asthma so he took it upon himself to be educated in all sorts of resperatory conditions, including CF. I felt like I was in good hands with him.

Then we moved to Seattle and the clinic is now in my backyard pretty much. So now I only my GP for non-CF stuff. But she still keeps the clinic up to date on what's going on with me. If I have to call the clinic after-hours I do get an on call person, but I can say call Dr. So-and-so, he/she is familiar with me and my history. If its during the day I talk to the nurse coordinator and she contacts whoever she needs to about me (doc, dietician, social worker).

 

[thefrogprincess]

I've had both experiences. When I was a kid our CF clinic was a 3 hour drive one way. So our local doc and CF clinic were very good about keeping each other up to date on everything. The local doc had asthma so he took it upon himself to be educated in all sorts of resperatory conditions, including CF. I felt like I was in good hands with him.

Then we moved to Seattle and the clinic is now in my backyard pretty much. So now I only my GP for non-CF stuff. But she still keeps the clinic up to date on what's going on with me. If I have to call the clinic after-hours I do get an on call person, but I can say call Dr. So-and-so, he/she is familiar with me and my history. If its during the day I talk to the nurse coordinator and she contacts whoever she needs to about me (doc, dietician, social worker).

 

[thefrogprincess]

I've had both experiences. When I was a kid our CF clinic was a 3 hour drive one way. So our local doc and CF clinic were very good about keeping each other up to date on everything. The local doc had asthma so he took it upon himself to be educated in all sorts of resperatory conditions, including CF. I felt like I was in good hands with him.

Then we moved to Seattle and the clinic is now in my backyard pretty much. So now I only my GP for non-CF stuff. But she still keeps the clinic up to date on what's going on with me. If I have to call the clinic after-hours I do get an on call person, but I can say call Dr. So-and-so, he/she is familiar with me and my history. If its during the day I talk to the nurse coordinator and she contacts whoever she needs to about me (doc, dietician, social worker).

 

[Wheezie]

I've gone to a few different "clinics"...Stanford was the first (and by far the best, IMO). There I had the entire CF team and the docs were/are dedicated strictly to CF. When I moved, I commuted 3 hours to continue going to Stanford because, like an idiot I didn't research it and had no idea there was a CF center practically in my own backyard! I didn't have a local doc at all though, which was another bad idea and I had a pretty bad incident which required immediate hospitalization and that's how I came to switch clinics. The current clinic has the whole team too (social worker, nutritionist, RT, nurse coordinator...) but the docs, although specializing in CF, also see other pulmo patients. Sometimes I can't see MY doc because he's seeing non-CFers and I have to see the other doc (who I don't like much at all). For a brief time, I had to switch due to insurance - I had Kaiser. Don't know how many of you are familiar with them, but don't ever switch to Kaiser, lol. They're trying to get the whole CF thing down, but they're really still learning. (by the way, Kaiser is what my parents had when I was born - they missed my diagnosis and I didn't find out I had CF till I was 11).

I'm currently looking for a job back near Stanford as my insurance won't pay for me to be seen there when there is an accredited CF center here locally. If I have to get a transplant, and it's lookin' like that may be happening within the next few years, I want to get it at Stanford. Period.

It's always difficult for anyone to switch docs - I think it's just a lot more difficult for those of us who have chronic illnesses and have been cared for by the same team for so many years. I was open-minded and willing to try other centers and I can't complain (except about Kaiser, lol), but ultimately I have a connection with my first center that I'm not sure could be established anywhere else. I'd be commuting those three hours today if it were feasible. That's just me though.

 

[Wheezie]

I've gone to a few different "clinics"...Stanford was the first (and by far the best, IMO). There I had the entire CF team and the docs were/are dedicated strictly to CF. When I moved, I commuted 3 hours to continue going to Stanford because, like an idiot I didn't research it and had no idea there was a CF center practically in my own backyard! I didn't have a local doc at all though, which was another bad idea and I had a pretty bad incident which required immediate hospitalization and that's how I came to switch clinics. The current clinic has the whole team too (social worker, nutritionist, RT, nurse coordinator...) but the docs, although specializing in CF, also see other pulmo patients. Sometimes I can't see MY doc because he's seeing non-CFers and I have to see the other doc (who I don't like much at all). For a brief time, I had to switch due to insurance - I had Kaiser. Don't know how many of you are familiar with them, but don't ever switch to Kaiser, lol. They're trying to get the whole CF thing down, but they're really still learning. (by the way, Kaiser is what my parents had when I was born - they missed my diagnosis and I didn't find out I had CF till I was 11).

I'm currently looking for a job back near Stanford as my insurance won't pay for me to be seen there when there is an accredited CF center here locally. If I have to get a transplant, and it's lookin' like that may be happening within the next few years, I want to get it at Stanford. Period.

It's always difficult for anyone to switch docs - I think it's just a lot more difficult for those of us who have chronic illnesses and have been cared for by the same team for so many years. I was open-minded and willing to try other centers and I can't complain (except about Kaiser, lol), but ultimately I have a connection with my first center that I'm not sure could be established anywhere else. I'd be commuting those three hours today if it were feasible. That's just me though.