Frustrated with new CF center

BabyBeauty · Jan 23, 2009

We moved recently and had our first CF Center appt. It was very different than what we are used to at our old center. At our old center we went back immediately instead of waiting in the waiting room. Our clinic visits were only an hour long. We also were not scheduled at the same time as the adults.

Our first appt was the opposite! We waited in the waiting room for 30 minutes while my 1 year old struggled to touch and put everything in her mouth. We were there for 4 HOURS then still had to check out. Check out was in the waiting room and there were 3 adults with masks. One of which was a poor girl that was coughing unlike anything I have heard before. We left in shock.

I finally got the guts to talk to the social worker today. I laid out my concerns very nicely and was basically told that the appointments will last long and "the people that accept that have a more positive experience." How do I convince a 1 year old that staying in a room for 3 hours can be really, really fun? Then she told me they will give me a mask to put on my daughter for the waiting room. Really? Avery would pull that thing off before I blinked! Then how am I supposed to keep her from touching everything in sight? I was also told that because the appointments last so long there will be the possibility I will run into adults. My daughter hasn't cultured anything as of yet. I am fighting tooth and nail to keep her healthy for as long as I can. Why is it that 'my new CF team' isn't on board with that?

I left the conversation baffled, frustrated, and confused. I thought the social worker was supposed to be compationate and not argumentative. I thought the CF centers were supposed to be top notch. Why would a few simple concerns need to be argued about?

So enough venting. Where to go from here? Do we go to a private pulmonologist, drive to the other CF center an hour and a half away or stay?

What would you do?

BabyBeauty · Jan 23, 2009

We moved recently and had our first CF Center appt. It was very different than what we are used to at our old center. At our old center we went back immediately instead of waiting in the waiting room. Our clinic visits were only an hour long. We also were not scheduled at the same time as the adults.

Our first appt was the opposite! We waited in the waiting room for 30 minutes while my 1 year old struggled to touch and put everything in her mouth. We were there for 4 HOURS then still had to check out. Check out was in the waiting room and there were 3 adults with masks. One of which was a poor girl that was coughing unlike anything I have heard before. We left in shock.

I finally got the guts to talk to the social worker today. I laid out my concerns very nicely and was basically told that the appointments will last long and "the people that accept that have a more positive experience." How do I convince a 1 year old that staying in a room for 3 hours can be really, really fun? Then she told me they will give me a mask to put on my daughter for the waiting room. Really? Avery would pull that thing off before I blinked! Then how am I supposed to keep her from touching everything in sight? I was also told that because the appointments last so long there will be the possibility I will run into adults. My daughter hasn't cultured anything as of yet. I am fighting tooth and nail to keep her healthy for as long as I can. Why is it that 'my new CF team' isn't on board with that?

I left the conversation baffled, frustrated, and confused. I thought the social worker was supposed to be compationate and not argumentative. I thought the CF centers were supposed to be top notch. Why would a few simple concerns need to be argued about?

So enough venting. Where to go from here? Do we go to a private pulmonologist, drive to the other CF center an hour and a half away or stay?

What would you do?

BabyBeauty · Jan 23, 2009

We moved recently and had our first CF Center appt. It was very different than what we are used to at our old center. At our old center we went back immediately instead of waiting in the waiting room. Our clinic visits were only an hour long. We also were not scheduled at the same time as the adults.

Our first appt was the opposite! We waited in the waiting room for 30 minutes while my 1 year old struggled to touch and put everything in her mouth. We were there for 4 HOURS then still had to check out. Check out was in the waiting room and there were 3 adults with masks. One of which was a poor girl that was coughing unlike anything I have heard before. We left in shock.

I finally got the guts to talk to the social worker today. I laid out my concerns very nicely and was basically told that the appointments will last long and "the people that accept that have a more positive experience." How do I convince a 1 year old that staying in a room for 3 hours can be really, really fun? Then she told me they will give me a mask to put on my daughter for the waiting room. Really? Avery would pull that thing off before I blinked! Then how am I supposed to keep her from touching everything in sight? I was also told that because the appointments last so long there will be the possibility I will run into adults. My daughter hasn't cultured anything as of yet. I am fighting tooth and nail to keep her healthy for as long as I can. Why is it that 'my new CF team' isn't on board with that?

I left the conversation baffled, frustrated, and confused. I thought the social worker was supposed to be compationate and not argumentative. I thought the CF centers were supposed to be top notch. Why would a few simple concerns need to be argued about?

So enough venting. Where to go from here? Do we go to a private pulmonologist, drive to the other CF center an hour and a half away or stay?

What would you do?

BabyBeauty · Jan 23, 2009

We moved recently and had our first CF Center appt. It was very different than what we are used to at our old center. At our old center we went back immediately instead of waiting in the waiting room. Our clinic visits were only an hour long. We also were not scheduled at the same time as the adults.

Our first appt was the opposite! We waited in the waiting room for 30 minutes while my 1 year old struggled to touch and put everything in her mouth. We were there for 4 HOURS then still had to check out. Check out was in the waiting room and there were 3 adults with masks. One of which was a poor girl that was coughing unlike anything I have heard before. We left in shock.

I finally got the guts to talk to the social worker today. I laid out my concerns very nicely and was basically told that the appointments will last long and "the people that accept that have a more positive experience." How do I convince a 1 year old that staying in a room for 3 hours can be really, really fun? Then she told me they will give me a mask to put on my daughter for the waiting room. Really? Avery would pull that thing off before I blinked! Then how am I supposed to keep her from touching everything in sight? I was also told that because the appointments last so long there will be the possibility I will run into adults. My daughter hasn't cultured anything as of yet. I am fighting tooth and nail to keep her healthy for as long as I can. Why is it that 'my new CF team' isn't on board with that?

I left the conversation baffled, frustrated, and confused. I thought the social worker was supposed to be compationate and not argumentative. I thought the CF centers were supposed to be top notch. Why would a few simple concerns need to be argued about?

So enough venting. Where to go from here? Do we go to a private pulmonologist, drive to the other CF center an hour and a half away or stay?

What would you do?

BabyBeauty · Jan 23, 2009

We moved recently and had our first CF Center appt. It was very different than what we are used to at our old center. At our old center we went back immediately instead of waiting in the waiting room. Our clinic visits were only an hour long. We also were not scheduled at the same time as the adults.
 
 Our first appt was the opposite! We waited in the waiting room for 30 minutes while my 1 year old struggled to touch and put everything in her mouth. We were there for 4 HOURS then still had to check out. Check out was in the waiting room and there were 3 adults with masks. One of which was a poor girl that was coughing unlike anything I have heard before. We left in shock.
 
 I finally got the guts to talk to the social worker today. I laid out my concerns very nicely and was basically told that the appointments will last long and "the people that accept that have a more positive experience." How do I convince a 1 year old that staying in a room for 3 hours can be really, really fun? Then she told me they will give me a mask to put on my daughter for the waiting room. Really? Avery would pull that thing off before I blinked! Then how am I supposed to keep her from touching everything in sight? I was also told that because the appointments last so long there will be the possibility I will run into adults. My daughter hasn't cultured anything as of yet. I am fighting tooth and nail to keep her healthy for as long as I can. Why is it that 'my new CF team' isn't on board with that?
 
 I left the conversation baffled, frustrated, and confused. I thought the social worker was supposed to be compationate and not argumentative. I thought the CF centers were supposed to be top notch. Why would a few simple concerns need to be argued about?
 
 So enough venting. Where to go from here? Do we go to a private pulmonologist, drive to the other CF center an hour and a half away or stay?
 
 What would you do?

Mommafirst · Jan 23, 2009

I think you know that you can't keep going there. You wouldn't be posting this if you didn't already know that. I'm appalled at their system and you are too well educated to accept this. If it were me, I guess I'd want to drive the hour and a half to go to the CF center and then see if you could get a local pulmonologist to handle local emergency type things that can't have you driving that far.

I'm so sorry that you are dealing with this. If it were me, I'd contact the CFF as well. The CFF accreditation is based on certain guidelines for infection control and if this center is following them, they shouldn't be accredited.

Mommafirst · Jan 23, 2009

I think you know that you can't keep going there. You wouldn't be posting this if you didn't already know that. I'm appalled at their system and you are too well educated to accept this. If it were me, I guess I'd want to drive the hour and a half to go to the CF center and then see if you could get a local pulmonologist to handle local emergency type things that can't have you driving that far.

I'm so sorry that you are dealing with this. If it were me, I'd contact the CFF as well. The CFF accreditation is based on certain guidelines for infection control and if this center is following them, they shouldn't be accredited.

Mommafirst · Jan 23, 2009

I think you know that you can't keep going there. You wouldn't be posting this if you didn't already know that. I'm appalled at their system and you are too well educated to accept this. If it were me, I guess I'd want to drive the hour and a half to go to the CF center and then see if you could get a local pulmonologist to handle local emergency type things that can't have you driving that far.

I'm so sorry that you are dealing with this. If it were me, I'd contact the CFF as well. The CFF accreditation is based on certain guidelines for infection control and if this center is following them, they shouldn't be accredited.

Mommafirst · Jan 23, 2009

I think you know that you can't keep going there. You wouldn't be posting this if you didn't already know that. I'm appalled at their system and you are too well educated to accept this. If it were me, I guess I'd want to drive the hour and a half to go to the CF center and then see if you could get a local pulmonologist to handle local emergency type things that can't have you driving that far.

I'm so sorry that you are dealing with this. If it were me, I'd contact the CFF as well. The CFF accreditation is based on certain guidelines for infection control and if this center is following them, they shouldn't be accredited.

Mommafirst · Jan 23, 2009

I think you know that you can't keep going there. You wouldn't be posting this if you didn't already know that. I'm appalled at their system and you are too well educated to accept this. If it were me, I guess I'd want to drive the hour and a half to go to the CF center and then see if you could get a local pulmonologist to handle local emergency type things that can't have you driving that far.
 
 I'm so sorry that you are dealing with this. If it were me, I'd contact the CFF as well. The CFF accreditation is based on certain guidelines for infection control and if this center is following them, they shouldn't be accredited.

rubyroselee · Jan 23, 2009

Hi there,

I ran into a similar situation with myself a few years ago. I grew up going to the most wonderful and top CF centers in the country. They make you like a real person, not just a patient. So when I moved out of state, I started going to another CF center who I thought was reputable. Boy was I wrong! I went in there and my new doctor wanted to change all my meds around and could care less what *I* wanted to do about my health. His research knowledge was wrong and he was cold and uncaring. Their nurse practitioner knew nothing about CF and I felt like I had to teach her a thing or two about CF care.

Anyhow, needless to say, I found another CF doctor who is wonderful! I enjoy going to clinic again and he practices very similar to my old clinic. Even though CF clinics have to follow certain guidelines, they are also very, very different. The people are different, their policices are a little diffierent, etc.

So my advice is that you have to find a clinic and a doctor that feels good to you and your daughter....even if you have to drive further to get there. I used to drive 4 hrs to get to my doctor. It was WELL worth the trip.

Good luck.

rubyroselee · Jan 23, 2009

Hi there,

I ran into a similar situation with myself a few years ago. I grew up going to the most wonderful and top CF centers in the country. They make you like a real person, not just a patient. So when I moved out of state, I started going to another CF center who I thought was reputable. Boy was I wrong! I went in there and my new doctor wanted to change all my meds around and could care less what *I* wanted to do about my health. His research knowledge was wrong and he was cold and uncaring. Their nurse practitioner knew nothing about CF and I felt like I had to teach her a thing or two about CF care.

Anyhow, needless to say, I found another CF doctor who is wonderful! I enjoy going to clinic again and he practices very similar to my old clinic. Even though CF clinics have to follow certain guidelines, they are also very, very different. The people are different, their policices are a little diffierent, etc.

So my advice is that you have to find a clinic and a doctor that feels good to you and your daughter....even if you have to drive further to get there. I used to drive 4 hrs to get to my doctor. It was WELL worth the trip.

Good luck.

rubyroselee · Jan 23, 2009

Hi there,

I ran into a similar situation with myself a few years ago. I grew up going to the most wonderful and top CF centers in the country. They make you like a real person, not just a patient. So when I moved out of state, I started going to another CF center who I thought was reputable. Boy was I wrong! I went in there and my new doctor wanted to change all my meds around and could care less what *I* wanted to do about my health. His research knowledge was wrong and he was cold and uncaring. Their nurse practitioner knew nothing about CF and I felt like I had to teach her a thing or two about CF care.

Anyhow, needless to say, I found another CF doctor who is wonderful! I enjoy going to clinic again and he practices very similar to my old clinic. Even though CF clinics have to follow certain guidelines, they are also very, very different. The people are different, their policices are a little diffierent, etc.

So my advice is that you have to find a clinic and a doctor that feels good to you and your daughter....even if you have to drive further to get there. I used to drive 4 hrs to get to my doctor. It was WELL worth the trip.

Good luck.

rubyroselee · Jan 23, 2009

Hi there,

I ran into a similar situation with myself a few years ago. I grew up going to the most wonderful and top CF centers in the country. They make you like a real person, not just a patient. So when I moved out of state, I started going to another CF center who I thought was reputable. Boy was I wrong! I went in there and my new doctor wanted to change all my meds around and could care less what *I* wanted to do about my health. His research knowledge was wrong and he was cold and uncaring. Their nurse practitioner knew nothing about CF and I felt like I had to teach her a thing or two about CF care.

Anyhow, needless to say, I found another CF doctor who is wonderful! I enjoy going to clinic again and he practices very similar to my old clinic. Even though CF clinics have to follow certain guidelines, they are also very, very different. The people are different, their policices are a little diffierent, etc.

So my advice is that you have to find a clinic and a doctor that feels good to you and your daughter....even if you have to drive further to get there. I used to drive 4 hrs to get to my doctor. It was WELL worth the trip.

Good luck.

rubyroselee · Jan 23, 2009

Hi there,
 
 I ran into a similar situation with myself a few years ago. I grew up going to the most wonderful and top CF centers in the country. They make you like a real person, not just a patient. So when I moved out of state, I started going to another CF center who I thought was reputable. Boy was I wrong! I went in there and my new doctor wanted to change all my meds around and could care less what *I* wanted to do about my health. His research knowledge was wrong and he was cold and uncaring. Their nurse practitioner knew nothing about CF and I felt like I had to teach her a thing or two about CF care.
 
 Anyhow, needless to say, I found another CF doctor who is wonderful! I enjoy going to clinic again and he practices very similar to my old clinic. Even though CF clinics have to follow certain guidelines, they are also very, very different. The people are different, their policices are a little diffierent, etc.
 
 So my advice is that you have to find a clinic and a doctor that feels good to you and your daughter....even if you have to drive further to get there. I used to drive 4 hrs to get to my doctor. It was WELL worth the trip.
 
 Good luck.

TonyaH · Jan 23, 2009

Our CF doctor is an hour and a half away. We have a center closer, but I knew, moving to NC, that UNC was the place we wanted to be. I never even considered the fact that there was another center half the distance away. UNC is worth the drive.

I will say, though, that we, too have long visits. UNC does their best to have us back in a room within about 10 minutes of registration. But then it can take anywhere from 2 to 4 hours to see all of the members of the team. We just plan for it, pack snacks, games, etc. I know it won't change anytime soon, so we just accept it. The doctors are most definitely worth it.

As for adults in clinic, that one would concern me. Not that they are adults, but that you have heard more progressive disease in the waiting room. Do you know what their policy is on scheduling cepacia patients on separate days?...or patients who colonize resistant bacteria? I mean, an adult who does not colonize anything is no more a danger to your daughter's lungs than a three year old who does not culture anything. But it sounds like you are running into patients where that may not be the case.

Anyway, I agree wtih Heather. You probably already know what you have to do. An hour and a half drive is not all that bad. Let us know what you decide to do!

TonyaH · Jan 23, 2009

Our CF doctor is an hour and a half away. We have a center closer, but I knew, moving to NC, that UNC was the place we wanted to be. I never even considered the fact that there was another center half the distance away. UNC is worth the drive.

I will say, though, that we, too have long visits. UNC does their best to have us back in a room within about 10 minutes of registration. But then it can take anywhere from 2 to 4 hours to see all of the members of the team. We just plan for it, pack snacks, games, etc. I know it won't change anytime soon, so we just accept it. The doctors are most definitely worth it.

As for adults in clinic, that one would concern me. Not that they are adults, but that you have heard more progressive disease in the waiting room. Do you know what their policy is on scheduling cepacia patients on separate days?...or patients who colonize resistant bacteria? I mean, an adult who does not colonize anything is no more a danger to your daughter's lungs than a three year old who does not culture anything. But it sounds like you are running into patients where that may not be the case.

Anyway, I agree wtih Heather. You probably already know what you have to do. An hour and a half drive is not all that bad. Let us know what you decide to do!

TonyaH · Jan 23, 2009

Our CF doctor is an hour and a half away. We have a center closer, but I knew, moving to NC, that UNC was the place we wanted to be. I never even considered the fact that there was another center half the distance away. UNC is worth the drive.

I will say, though, that we, too have long visits. UNC does their best to have us back in a room within about 10 minutes of registration. But then it can take anywhere from 2 to 4 hours to see all of the members of the team. We just plan for it, pack snacks, games, etc. I know it won't change anytime soon, so we just accept it. The doctors are most definitely worth it.

As for adults in clinic, that one would concern me. Not that they are adults, but that you have heard more progressive disease in the waiting room. Do you know what their policy is on scheduling cepacia patients on separate days?...or patients who colonize resistant bacteria? I mean, an adult who does not colonize anything is no more a danger to your daughter's lungs than a three year old who does not culture anything. But it sounds like you are running into patients where that may not be the case.

Anyway, I agree wtih Heather. You probably already know what you have to do. An hour and a half drive is not all that bad. Let us know what you decide to do!

TonyaH · Jan 23, 2009

Our CF doctor is an hour and a half away. We have a center closer, but I knew, moving to NC, that UNC was the place we wanted to be. I never even considered the fact that there was another center half the distance away. UNC is worth the drive.

I will say, though, that we, too have long visits. UNC does their best to have us back in a room within about 10 minutes of registration. But then it can take anywhere from 2 to 4 hours to see all of the members of the team. We just plan for it, pack snacks, games, etc. I know it won't change anytime soon, so we just accept it. The doctors are most definitely worth it.

As for adults in clinic, that one would concern me. Not that they are adults, but that you have heard more progressive disease in the waiting room. Do you know what their policy is on scheduling cepacia patients on separate days?...or patients who colonize resistant bacteria? I mean, an adult who does not colonize anything is no more a danger to your daughter's lungs than a three year old who does not culture anything. But it sounds like you are running into patients where that may not be the case.

Anyway, I agree wtih Heather. You probably already know what you have to do. An hour and a half drive is not all that bad. Let us know what you decide to do!

TonyaH · Jan 23, 2009

Our CF doctor is an hour and a half away. We have a center closer, but I knew, moving to NC, that UNC was the place we wanted to be. I never even considered the fact that there was another center half the distance away. UNC is worth the drive.
 
 I will say, though, that we, too have long visits. UNC does their best to have us back in a room within about 10 minutes of registration. But then it can take anywhere from 2 to 4 hours to see all of the members of the team. We just plan for it, pack snacks, games, etc. I know it won't change anytime soon, so we just accept it. The doctors are most definitely worth it.
 
 As for adults in clinic, that one would concern me. Not that they are adults, but that you have heard more progressive disease in the waiting room. Do you know what their policy is on scheduling cepacia patients on separate days?...or patients who colonize resistant bacteria? I mean, an adult who does not colonize anything is no more a danger to your daughter's lungs than a three year old who does not culture anything. But it sounds like you are running into patients where that may not be the case.
 
 Anyway, I agree wtih Heather. You probably already know what you have to do. An hour and a half drive is not all that bad. Let us know what you decide to do!

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